My Disability May Be Invisible, But I’m Not

 

Hannah-Andrusky-Invisible-Disabilities-AssociationBut you don’t look sick.” “But you LOOK good.” “It’s all in your head.” “You just want attention.”

When most people are sick with the flu or a fever, they become pale and droopy and their hair is in a tussle. Therefore, when we meet someone who tells us he or she is ill or has an invisible disability, but he or she does not appear to be sick or in pain, we are often perplexed. Despite their appearance, we must realize that there is a difference between having a temporary cold or the flu and living day after day with a chronic illness or in chronic pain.

Many chronic conditions and disabilities are not as noticeable as a bad case of the flu. For instance, a person can battle symptoms such as extreme fatigue or cognitive impairments on the inside, even though he or she may appear healthy and well on the outside. Just the same, a person can have horrible pain or dizziness, despite the fact that he or she may seem strong and able.

IDA Ambassador Hannah Andrusky is someone who looks amazing and healthy on the outside while battling from injuries on the inside. In January of 2012, a serious car accident sidelined Hannah’s career as talk show host and stylist, as well as her confidence and self-esteem. Her ‘invisible disability‘ of concussion syndrome left her depressed, exhausted and even suicidal. Hannah’s medications caused her to gain weight and have severe mood swings, contributing to her lack of equilibrium on many fronts. A single mother and a daughter, her caretakers often had enough of the resulting behaviors.

Oftentimes, the disbelief is magnified because the person with the illness tries to put on a brave “I’m doing great” face, especially around doctors. Nobody wants to look sick. But Hannah learned that she needed to show how the accident had really impacted her, so that her neurologist could see the real extent of her injuries. Hannah writes in Living the Invisible Disability:

“I was very frustrated. He had always told me he would keep me under observation for a year and see what happens. It had been a year and a half since the accident. This doctor saw me once every six weeks for 10 minutes. I was pretty sure I knew my body better than he did. Something was still very wrong and without the proper information, I didn’t know how to heal myself. I dragged myself to his office. This time, though, I didn’t dress well or fix myself up like all the previous visits. Let him see me as I really was.

Well, it wasn’t pretty. I barely had the energy to get myself there. No makeup, no pretty dress; I showed up looking the way I did at home. One of the problems with this kind of injury is when you look good on the outside, everybody just says, “What’s wrong with you? You look fine.”

I was lying on the table when he entered the exam room. I wasn’t going to put on a brave face this time. I told him I was sorry but I didn’t have the energy to get up. It was true.

My neurologist sat down, looked at me, put his hand on my knee, and said, “Hannah. You’re going to be okay. I think you’ve had some situational depression. There’s a lot going on in your life….” He was so condescending; I nearly went through the roof.

I interrupted him, practically shouting. “Are you kidding me?! Do you think I’m sitting here in your office because it’s fun?!”

I laid into him. I was entirely done with feeling like he was discounting what I was telling him. “I had suicidal thoughts last week. Again. What is wrong with me? I… want… the PET scan!”

Without a word he got up and started typing into his laptop. “Okay. I’ll get you the PET scan.”

We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing his or her situation or trying to pull the wool over our eyes, because to us he or she looks fine. Even professionals struggle with believing the person’s illness and injuries. I find that the real experts are the ones who live daily with illness and pain, year after year.

So how can we help? As we have learned, it is difficult to recognize there is a need by simply looking at someone with an illness or injury. On the outside, they may appear physically able to accomplish tasks because their fatigue, pain and other symptoms are on the inside.

As a result, we must learn not to disregard what our loved one is telling us simply because we cannot see the damaged organs, cells, muscles, bones and nervous systems from the outside. Thus, the first thing we must do is to learn to listen, without discounting what we cannot see.

We often fear that helping others will be time consuming. We think that to make a difference, we would have to cook all their meals, run all their errands and clean their house every week. Even the simplest things can go a long way in helping them conserve energy, such as making lunch for them once a month or picking up some groceries or driving them to an appointment.

Many people are genuinely willing to help, but do not know where to begin. Because of this, we often offer by saying, “Call me if you need anything.” This is a great effort to reach out, but unfortunately, it does not work. For that reason, we cannot put the ball in their court and expect them to call us. So, how can we help if they will not ask when they need it?” Simple…we call them!

As a whole, we must remember to listen, believe what we hear, allow them to say, “No” and offer specific help that is convenient for us and them. I know Hannah’s family and friends helped her when possible with her recovery.

Many people have allowed their illness and disabilities to be a catalyst to help others on their journeys and Hannah leads by example. With faith and a keen sense of knowing she experienced these things for a purpose, Hannah began acknowledging her struggle publicly, eliciting responses from those with similar issues due to Post Traumatic Stress Disorder (PTSD), illness or the basic trauma of living in our changing world. She chose to become a student of what worked for her in her recovery process, perspective and the perceptions of the gifts she knew she was intended to pay forward. Now, Hannah speaks, teaches, coaches and has authored the very soon to be released book Living the Invisible Disability – Coping with Post Concussion Syndrome, Traumatic Brain Injury & Depression. You can learn all about Hannah on her site, Hannah Talk.

There are countless people who live with invisible disabilities. They are all around us. Even though we do not see their illness or pain, we do see them. Let’s all help them become Invisible No More.

This article was first published on Disability.Blog, by Disability.Gov on April 16, 2014.

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

It’s Your Own Fault

Its-Your-Own-Fault-Illness-Pain

Have you ever heard the words, “Well, what do you expect?” when someone learns that a person is living with illness or pain caused by an injury from their job or hobby. Maybe that person’s job was full of risk, such as working in a gold mine as highlighted on the Discovery Channel’s show Gold Rush, or on a crab boat similar to Deadliest Catch.

Maybe they played sports and received multiple concussions and are impacted by the long-term effects or repeated head injuries. Former Colorado Avalanche hockey player Scott Parker knows this firsthand. According to Adrian Dater, a reporter for The Denver Post:

Scott Parker lies in bed, dreading what might come next. Soon after awakening, his ears ring so loud they seem like the equivalent of 100 fire alarms. Waves of nausea wash over him until he vomits. His eyes glaze over.

One of the toughest men to ever play in the NHL is knocked out, not from an opponent’s punch, but from simply getting out of bed.

Nearly six years since he retired from the NHL as one of its toughest enforcers, Parker is finding everyday life a more fearsome opponent than any he dropped the gloves against. Some days he feels fine. Many days he finds himself paying the price of years of blows to his head. The 6-foot-6, 245-pound Parker — nicknamed “The Sheriff” as a player — frequently is debilitated by seizures. He has to wear sunglasses most of the time because too much light can bring on headaches that leave him incapacitated. When Parker looks down, he cannot “track” objects. Otherwise, he gets dizzy and nauseous.

Or maybe it’s working as a stuntwoman, such as Leslie Hoffman, who noted:

As a stuntwoman, I expected to get bumps and bruises, much like any other physical career (i.e. football players, hockey players, etc.) I also have had explosions go off near me or actually had small explosions put on my body to make it appear as if I had been shot, much like our soldiers.

Little did I know, whether the director wanted me to hit my head, like the dead cook in Clue, or I made a slight miscalculation on my part and ending up hitting my head, that I would end up with PCS (Post-Concussion Syndrome), TBI (Traumatic Brain Injury) and PTSD (Post-Traumatic Stress Disorder).

When people are injured doing high risk jobs and we find they are suffering from injuries sustained as a result of those jobs, we have a tendency to not have compassion for them because “it’s their own fault.” Furthermore, because of the invisible nature of their illness, we often do not believe them. If we do actually believe them, we either blame them causing them shame or dismiss their issues altogether.

Yet, if we know the apparent cause of illness and injury, do we show compassion and care? Or do we turn away and let these individuals fend for themselves? Most people do not take on risky jobs with the intent of becoming permanently injured and disabled. They use all kinds of safety measures and equipment to lessen the risk of injury.

What about the risk of driving a car? I think of those who were injured due to vehicle crashes, such as Dr. Margaret Ferrante and Hannah Andrusky, or from a rock climbing accident such as Angela Pierce. If they were at fault for causing the accident, would we look differently at them and dismiss their injuries just like those who participate in risky jobs and hobbies?

We may believe someone more if there appears to be an obvious reason for their illness or pain. Imagine the lack of belief when a cause of a person’s illness can’t be determined.

In a court of law, people who are charged with a crime are supposed to be afforded the opportunity to be proven guilty. The prosecutor, jury and judge determine their guilt based upon facts beyond a reasonable doubt. If there is reasonable doubt, lack of evidence or no eyewitness testimony, the accused is allowed to remain innocent and go free. Even though the evidence may appear to point to guilt, it must be proven by experts in the law and not by armchair quarterbacks such as us.

This brings up a question in regards to the disability and illness community. Why do people who live with illness, pain and disability and whose symptoms are invisible tend to be looked upon as guilty of faking or lying about their situation? It seems that they are guilty until proven innocent. Although doctors have already determined their condition by spending time with the patient and putting them through tests, we still often believe we know better.

Sometimes our loved one who is suffering has yet to be diagnosed and, in this case, we think, “Well, if a doctor can’t figure it out, then maybe the person really is faking.” Yet, even doctors admit that many patients have complicated cases and a diagnosis may take years and even decades to determine. During this time, the person living with the pain and illness daily continues on in misery while having their symptoms dismissed by friends and family.

Are we all really such experts in accessible parking laws that we can make judgments whether the person parking there has the right to do so? Are we aware of the legal forms and medical proof needed to obtain a placard or accessible license plate, not to mention the shame of having people stare and even yell at you for parking in a space for which you have the right?

What if we see someone in a store with a service dog? Are our first thoughts or words out of our mouths, “Hey, I wish I could bring my dog with me everywhere, too” or “No pets allowed”? A service dog is an assistive device just like a cane or wheelchair and allows the person to function in society with some sense of normality. We have no idea how a person’s life is benefitted by a service dog or all of the amazing services the animal may perform, such as helping with balance, fetching dropped items and alerting to possible seizures or sudden drops in blood glucose levels.

It is time to let our loved one know that we believe him or her when they say they are in pain or have a disability, even though we do not see it with our own eyes. They are the eyewitnesses living every moment in a body wracked with pain and illness. They need to know we love them. We need to take their word when they state they can or cannot do something. We need to ask them how we can help, versus thinking we are their doctor, lawyer or other disability expert, or even them. We should not ignore them or dismiss them even when their actions might have played a part in their injury or disability.

“I’m not really afraid. I just want to get some answers,” Scott Parker said. “For me to have to explain the symptoms to people, they don’t know. I sometimes say, ‘Let me give you 20-plus concussions and then we can talk.’ You just want someone to believe in you, for someone to say, ‘You’re not going crazy, it’s not you.’ They haven’t pinpointed what’s wrong. It’s not conclusive.”

Let’s not be judge and jury and condemn those in pain and suffering to loneliness and isolation, but be their friend, comforter, champion and caregiver. Most people do not ask to be ill and in pain; it is thrust upon them and it is very real. Others may be guilty of participating in risky jobs and hobbies, yet their pain and suffering is also real. Let’s treat them all the same way by helping them to become invisible no more.

This article was first published on Disability.Blog, by Disability.Gov on January 13, 2014.

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

My Thoughts on Sharing Your Illness with Others

Alanna-Wong-Invisible-Disabilities

Alanna Wong

Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.

People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.

By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?

I also believe that talking about your illness can help with the healing process. There is so much freedom in telling the truth. You no longer have to hide or pretend. And by opening up, you also reach out to others who may be going through a similar experience, and that helps you realize that you’re not alone. The more you share, the more you inspire others to do the same. And when you heal together, you heal faster. Chronic illness can make a sufferer feel alienated, but when we share our experiences with the illness, we open up new connections with others just like ourselves, and we don’t feel so alone anymore. Knowing that we are not alone is such a comforting feeling and it can definitely help the one struggling get through a difficult period. When you share, you are also helping yourself release bottled-up emotions like anger, frustration and fear. I’ve personally found that, the more I share and talk about my condition, the less of an effect it has on me.

Sharing your story is also a great way to spread awareness. Awareness, I believe, is what leads to acceptance. When there is no acceptance, there is very little support and people tend to get left behind. Opening up about your illness can help change this. The more awareness about your condition, the less isolated you will feel. And who knows, you might even inspire others to get the help they need. With acknowledgement comes acceptance.

About Alanna Wong

Alanna has spent the past seven years dedicating her life to raising awareness for Kleine-Levin Syndrome (KLS) in an effort to help other sufferers. Alanna’s focus has been to raise funds for research, engage and connect with the community, and facilitate the KLS Foundation website. Alanna is writing her KLS memoir. You can read a FREE introductory section of her book here: http://alannawonglife.com/real-life-sleeping-beauty/ Alanna has been featured in numerous media outlets including: Anderson Cooper, ITV London, Sunday Night (Australia), The Sun, The Daily Mail, and Seventeen Magazine (Singapore).

The 17th Mile: Vulnerability, Founder’s Syndrome and My Own Mental Illness

Photo by D. H. Parks Courtesy of Flickr Creative Commons

For those of you who know me, you know I am a slow and steady marathon maniac. For the past decade, I run a couple of marathons a year trying to someday run a marathon in all 50 states. For me marathoning is a metaphor for my life: committing to audacious adventures and figuring out how to get there step by step, finding dedicated partners to jog along with me, and riding the adrenaline rush when crossing the finish line. The other metaphor, which has been a focus of my year, is mile 17.

At mile 17, I lose hope. I am a long way in with a long way to go. My feet feel like someone is setting a torch to them, my stomach is doing back flips, and my brain is shutting down lobe by lobe. I go into a very dark place inside myself, put my head down and shuffle along, talking myself into one more mile. And then another. I hate this part of the race. For me, this year – with all of the accomplishments and celebrating – has had many 17th miles.

It started last February when a series of experiences brought me to my knees. First, I had dental surgery that left me unable to eat anything but mush for over a month. The lack of food made me irritable, and I started losing weight. Then I had to let go of an employee I cared about, and the transition filled me with worry – for her safety and for the organization. My computer crashed slowly over about four weeks, and I lost the ability to communicate effectively and could no longer rely on this key instrument in critical moments like public presentations.  Then my dog suffered a spinal cord stroke that left him completely paralyzed from the rib cage to the hindquarters. We considered putting him down, but decided to rehabilitate him instead – a costly decision with a very uncertain outcome.

As these stressors coupled with some unnerving family issues added their weight to my already weakened state, it felt as if my brain was being hijacked. I have always known that I was vulnerable to mental illness – it runs in my genes – and wondered when it would be my turn. I used to say, “I am on the bipolar spectrum” because I have a chronic case of hypomania but had never been depressed. During these 9 weeks last Spring that changed. First, I couldn’t sleep. I would spend night after night tossing and turning. Then the anxiety got worse, and I just couldn’t stay in the bed because I was so agitated like ants crawling in my skin.  I knew what was happening but was completely unable to get on top of it, even with all the best coping strategies at my disposal. Soon, I found I couldn’t eat at all. I have a vivid memory of sitting alone at a Thai restaurant while I was traveling to a conference in Atlanta. I knew I had to eat to have strength for my presentation, but I just couldn’t swallow and sat there trying to choke down a few pieces of tofu in broth filled with sadness. During these weeks, my mind was consumed with catastrophic thoughts about my family and the future of the Carson J Spencer Foundation. I would be driving to work and find myself terrified of getting into an accident, and as a result found I really had to really focus on my breathing to get from one place to another.

Putting the pieces back together Photo by Leopard Print courtesy of  Flickr Creative commons

Then two things happened. My doctor give me some medication to sleep and control my anxiety, and I went to the American Association of Suicidology annual conference where I was able to get a better sense of perspective on what I brought to the world that had value. I felt love from my colleagues, valued for my expertise, and connected to something bigger than myself. The tide of the depression started to ebb out of my experience, and now, I am humbled to acknowledge that like so many I have worked to help, I too have a mental illness.

Like others with bipolar, I love my hypomania. I love having tons of energy, creative ideas, and unstoppable drive. The more life I live, however, the more I realize that others are not as keen on this state of being. I exhaust and frustrate people on a regular basis for trying to cram too much in too short a period of time, for living in an adrenaline-filled world of pressing deadlines, and for my lack of understanding of the effect I have on others. In the past, confrontations regarding my behavior often led to defensive reactions, but now, I can no longer deny, I must find a better way.

For me and many others, failure is so hard. I have always put a lot of effort into achieving – one of my blessings and curses. This year during my episode of depression and beyond, I found myself teetering up on the high wire, completely consumed with fear of failure. How could I not succeed doing something I feel I was destined to do, something my entire history has prepared me for, something I am doing in honor of my deceased beloved brother. My drive to overcome this fear snowballed into panic and has rippled through my organization like a cancer. Through many discussions, confrontations and reflections, I have come to accept that I have a classic case of Founder’s Syndrome.
Here is how one author describes it:

“When someone with passion and commitment creates and builds a strong association, members and society benefit. But these founders can turn into their own worst enemies when they refuse to recognize that their organization has “outgrown” them, needing leadership skills the founder does not have or refuses to develop. The result? A nasty case of “founder’s syndrome” or “founderitis.” The cure? A tricky mixture of growth opportunities, board involvement, and a firm delivery method.” ~Maryll Kleibrink, The Center for Association Leadership, December 2004 from http://www.asaecenter.org/Resources/euarticle.cfm?itemnumber=11531

Last week, I had the great privilege to hear Dr. Brene Brown speak at the Women’s Success Forum in Denver. For those of you who have watched her viral TED video, you know she is a researcher on the area of vulnerability. At this forum, she talked about how we can’t opt out of vulnerability – uncertainty, risk and emotional exposure and how daring greatly is about understanding vulnerability as courage.

This week I started something new: Executive Coaching. I am excited about facing these deficits and becoming a better me. I know the weeks ahead will have me taking a long look at difficult things, and I am ready.

Photo by Dru Broomfield courtesy of Flickr Creative Commons

Today, I am grateful for all of this. I am thankful for the courage Dr. Brown has given me to stand imperfectly, accept my challenges and ask for forgiveness from those I have affected. I appreciate my doctor, my medication, and my support system. I value all those who have confronted me in a respectful and solution-oriented way. I am looking forward to learning and changing, knowing that it won’t be easy, but the benefits will be magnificent.  Now I feel like I am somewhere at mile 22 – it’s still a tough road but there in the distance is the threshold of hope.
The 17th Mile: Vulnerability, Founder’s Syndrome and My Own Mental Illness was written on October 31, 2012 and published on IDA with permission. 

About Dr. Sally Spencer-Thomas

Dr. Sally Spencer-Thomas, CEO & Co-Founder of Carson J Spencer Foundation. International professional speaker on topics of suicide prevention, mental health promotion, and leadership. "As a psychologist, mental health advocate and survivor of my brother's suicide, I see the issues of suicide prevention from many perspectives. As an author and professional speaker I look for new ways to think about how we understand suicide and resilience." www.SallySpencerThomas.blogspot.com

Mrs. Washington Contestant Understands Invisible Disabilities

Rosie Lohr, Mrs. Washington Contestant

Rosie Lohr, Mrs. Washington Contestant

Written by Rosie Lohr, Mrs. Moses Lake

My name is Rosie Lohr. I am currently Mrs. Moses Lake and I am competing for Mrs. Washington, because it is my mission is to bring awareness to the public about invisible disabilities.

I chose the Invisible Disabilities Association as my platform and my charity, because I want to give people with invisible disabilities a voice in Washington state and other parts of America. I desire to help people understand that just because a disability may not be readily visible, they should not be denied what they need and questioned at every corner they turn. It hurts. It is not their fault and they deserve respect and not judgment.

Why am I passionate about this issue? On October 8, 1998 I received a phone call while at work that would change my life forever. The call was from my father who was at work at ASIMS, a chemical plant in Moses Lake WA. I took the call and my father said, “You need to sit down.” My first thought was that something must have happened to my four month old daughter; I began to shake. He told me there has been an explosion at the plant and I needed to get to the hospital now. Jeremy (my husband) had been injured.

When I got to the hospital it was mass confusion and no one had any answers. You see, the small town I live in was unequipped for something like this and they had no idea how to treat the men who were injured. Silicon tetra-chloride gas is a highly volatile and potent chemical that can produce “acute tissue damage” (i.e. any moist areas: lungs, eyes, nose, any sweat). It is an acid and burns these areas.

My husband was air-lifted to Harbor View Medical Center in Seattle, WA. I had to leave my daughter with family and get on a jet from Moses Lake to Seattle. The doctors at our local hospital said he may not make it, because the chemical had burned his lungs and eyes so severely.

Jeremy and Rosie Lohr

Jeremy and Rosie Lohr

After two weeks in the hospital and some touch-and-go experiences, he was sent home on oxygen and so our journey began with his disability. He was diagnosed with COPD and after many years and many prayers he regained his sight and uses oxygen on occasion, but always has it with him.

To look at him, he looks healthy. But he cannot walk up a hill, stairs or do any heavy lifting. He gets winded easily and has a cough that never goes away. We have experienced much discrimination and judgment, because he “LOOKS good!” For example, one time when we parked in an accessible spot, a person came up to us to ask for ID to prove he was disabled. At a concert event, I once had to argue with security to let us sit in the disabled seating. People love to whisper and point when I am carrying the heavy bags of groceries and he is not. They don’t understand that he would if he could! There are so many examples of this I could go on and on.

Cheer for Rosie on January 18, 2014 as she competes for Mrs. Washington at the Maydenbaur Theater in Bellevue, WA.  There are 27 contestants from all over Washington.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Matt Barrett Gets His Wish to Attend 2013 IDA Awards Banquet

Matt Barrett Speaking at the 2011 IDA Awards Banquet

Matt Barrett Speaking at the 2011 IDA Honor Awards Banquet

Meet Matt Barrett, a “Walking Miracle” in Denver on October 24th. Matt will be autographing his book, A View from the Street.

Matt Barrett has lived a life most could never imagine. Matt has battled 11 forms of cancer and four brain tumors since he was just two years old.

As if that were not enough, because his face and body are disfigured by over 1,700 major surgeries, strangers have called him a monster, children have hidden behind their mothers, and store managers have asked him to leave the premises.

It is such a travesty when people are quick to judge Matt from the outside, because they are certainly missing out on getting to know this amazing person.

Animals sense Matt's gentle spirit.

Animals sense Matt’s gentle spirit.

Despite a lifetime of fighting cancer, being homeless off and on for most of his adult life, and enduring excruciating pain on a daily basis, Matt remains a giving and loving soul. 

Ask anyone who knows Matt and they will tell you he is a “Gentle Giant.” At 6 foot 4, over 300 pounds with a love for others as big as he is, his nickname seems fitting.

People on the streets don’t have a clue what they are missing when they fail to talk with this man and give him the respect he deserves. Those who hear about Matt’s journey are not only amazed, but inspired to be more appreciative of what they have.

For decades, doctors have called Matt a “Walking Miracle!” He has lived many, many years beyond anyone’s expectations. This has allowed him to continue his purpose in making this world a better place.

In 2011, Matt received a standing ovation as a Special Guest Speaker at the Invisible Disabilities Association Awards Banquet where there was not a dry eye in the house. Today, Matt was named an IDA Ambassador!

Matt has had many other accomplishments:

Matt Barrett and Sherri Connell, wife of IDA Founder

Matt Barrett and Sherri Connell, wife of IDA Founder

Although Matt has beaten countless odds, Matt’s prognosis is not good. Many doctors have told him he only has a matter of months or just weeks.

Thanks to the people who have rallied together to raise the funds, Matt’s wish to travel back to Denver for the 2013 Invisible Disabilities Association Awards Banquet is coming true!

Meet Matt on Thursday October 24th at the Denver Marriott South in Lone Tree. Details and registration: www.ItsNotAnIllusion.com

Matt Speaking at the 2011 Invisible Disabilities Association Awards Banquet

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IDA Ambassador, Matt Barrett

A Lifelong Journey with Special Guest, Matt Barrett

Matt Barrett Gets Wish to Come Back to Attend 2013 IDA Awards Banquet

Matt Barrett’s Website, A View from the Street 

Order Matt Barrett’s Poetry Book, A View from the Street

Lifelong Battle with Illness Claims Man’s Face, Family but Not His Spirit. Martha Kang. September 27, 2013.  Picked up by Associated Press - Man’s long struggle with cancer nears end. October 15, 2013.

Photographer Tells Matt’s Story

Celebrate Life Event for Matt Barrett. May 25, 3013. Seattle, Washington.

Homeless in Seattle - Has helped Matt make 2 trip wishes reality through their supporters

Tent City 3 - Where Matt lived for three years

 

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

My First TV Interview

Angela Pierce TV InterviewRecently, I was a guest on a local TV program hosted by Scott Kaplan and Amber Mesker.  It was the first time I had ever been interviewed.  I did not realize how simple the set up was, as I expected to see a lot more cameras, lights and noise.  It was a simple set and very quiet.

I was asked to come on and tell my story about my accident.  When the interview began, I thought it would be about how to motivate people via my story, but instead it was an account of what actually happened.  I took a moment in my mind to figure out how to bring motivation to the story, so I referenced the moment when I was put in the ambulance and told Scott and Amber that my thoughts were centered on survival.  Instead of laying in a hospital, I’ll be laying in the sun and enjoying the weather.

The way I thought I could motivate people was to tell them that the most important thing when facing tragedy was to tell yourself, “don’t give up.  You’ll have your day in the sun if you hold on to life.”  After almost thirty years, I still tell myself that same message and find it to be very helpful to me as new challenges and struggles surface.

In conclusion, here’s the message for you, the readers:  When difficulty or tragedy strikes, realize that there are many different ways you can respond.  The most important thing to remember is that you can tell yourself is that it will be OK.  The moment won’t last forever.  You are worth more than the price of the trauma!

RESOURCE

U-T San Diego – Front Page with Scott & Amber. Watch Angela’s interview. January 14, 2013.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

The Visible Invisible Disability

Wayne-Connell-and-Matt-Barrett-2011By Wayne Connell, Founder and President of the Invisible Disabilities Association 

What is a disability? In general, the term disability is often used to describe a physical or mental challenge. This could be a bump in life that can be managed, or a mountain that creates serious changes and loss.  Either way, this term should not be used to describe a person as weaker or lesser than anyone else!

Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.  Just because a person has a disability, that does not mean they are “disabled. “ Many living with physical or mental challenges are still active in their work, sports or hobbies. Some with disabilities are able to work full or part time, but may struggle to get through their day, with little or no energy for other things. On the other hand, others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and need assistance with their care.

According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who:  Has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment or is regarded as having such an impairment.

Furthermore, “A person is considered to have a disability if he or she has difficulty performing certain functions such as seeing, hearing, talking, walking, climbing stairs and lifting and carrying, or has difficulty performing activities of daily living, or has difficulty with certain social roles such as doing school work for children, working at a job and around the house for adults.” Statistics show that disabilities affect one-fifth of all Americans.

Often people think the term disability only refers to people who use a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.

The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

In addition, someone who has a visible impairment or uses an assistive device, such as a wheelchair, walker or cane, can also have invisible disabilities. Whether or not a person uses an assistive device, if they are debilitated by symptoms like those described above, they live with invisible disabilities.

My friend Matt Barrett is a real example of someone living with visible invisible disabilities. Matt is 46-years-old and has battled 11 types of cancer since the age of two, including basal cell nevus syndrome, a genetic form of cancer passed down through his family for six generations. He has had over 1,700 surgeries and has lived with unbearable pain and fatigue for decades.

Matt has also been homeless off and on for much of his adult life. Matt is originally from Grand Junction, Colorado and has also lived in Portland, under a bridge in Los Angeles and in what is called “The Hole” in Seattle. Until a year ago September, he lived for three years in a tent in Tent City 3 in Seattle. He has written a book of poetry about being homeless and a blog, both called A View from the Street.

In addition to the battle of illness and being without a home, Matt has also lived with discrimination that most of us cannot fathom. Due to the surgeries Matt has had on his face, he has endured stares, dirty looks and has even has been asked to leave retail stores because he was “scaring” someone’s child.

You would think after a life of being treated this way, that Matt would be a bitter and angry person. However, those who take the time to get to know him find that he is a very kind, loving and giving man. What’s more, they are inspired and their lives are deeply enriched.

In 2011, freelance photographer Ilona Berzups was so moved by Matt’s story that she embarked on a photo essay project called, “Walking with Giant – One man’s battle with homelessness and debilitating illness.” (Matt’s nicknames are “Gentle Giant” and “Bear” because at 6’ 5”, he towers over most people.)

Also in 2011, Matt was determined to travel to Colorado to attend the Invisible Disabilities Association’s Awards Banquet and to spend time with a fellow high school classmate – my wife, Sherri.  Matt has wanted to attend for many years. After getting more bad news from his doctors about the tumors in his brain, he almost canceled. However, once you know Matt, you know that nothing was going to stop him from coming to Colorado. (He attended this past October for a second year as well).

When we found out Matt would be joining us in person, we immediately re-arranged the evening’s schedule and invited him to be a surprise Special Guest Speaker. Karyn Buxman, IDA Advisory Board member, National Hall of Fame speaker and nurse, gave a brief introduction as Matt approached the stage. Just a small glimpse into his life drove the attendees to their feet when he stepped up to the podium.

Matt briefly shared about his journey and appreciation for IDA’s compassion, awareness and support for him and for others. There was not a dry eye in the house, as lives were changed by Matt’s incredible lifelong story of perseverance in the midst of incredible hardship and pain.

By sharing Matt’s journey, our hope is that his struggles, pain and sheer courage will help us all to look beyond our preconceptions. Let’s not judge others by the way they look on the outside. Instead, let’s give love to one another and find out what they have been through, what they need and who they are on the inside.

Unfortunately, people often do judge others by what they see and jump to conclusions about what they can or cannot do. This can be equally frustrating for those who may appear unable, but are perfectly capable, and those who appear able, but are not.

The bottom line is that everyone with a disability is different – sometimes visibly, sometimes invisibly and sometimes both. They have varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes. Let’s learn to envision a world where people living with illness, pain and disability will be Invisible No More! 2013 here we come!

This article was first published on Disability.Blog by Disability.gov. December 21, 2012.

MORE IDA ARTICLES PUBLISHED ON DISABILITY.BLOG:

A Love That’s Unbroken

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

Friendships Over Fragrances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability

What’s So Funny About …

 

MORE ABOUT MATT BARRETT:

A View from the Street. Blog by Matt Barrett

More Articles About Matt on IDA

Walking with Giant. Photo Essay by Ilona Berzups

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

A Tick Bite Changed My Life Forever

A Tick Bite Changed My Life Forever - Huffington Post 12-12-2012 Set 2HuffPost LIVE produced by The Huffington Post a video interview and article with Wayne Connell, the founder and president of the Invisible Disabilities Association (my hubby) and me.

The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.

Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.

The Huffington Post wrote:

Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.

“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”

“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.

The show was produced by the Huffington Post with excerpts from the HuffPost Live episode from December 11, 2012 entitled, “Not Handicapped Enough.” Interviewed for this segment was Wayne, Karyn Buxman, RN, MSN and Elsa Sjunneson-Henry and was hosted by Nancy Redd. Read full story!

Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!

RESOURCES

Invisible Disabilities Association

HuffPost LIVE

The Huffington Post

Not Handicapped Enough

About Sherri Connell

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, model in fashion shows, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. Sherri also lives with Chemical Injury, which causes her to be very isolated from family and friends. Her unbearable and disabling pain, fatigue and cognitive disorders are unrelenting 24x7. Sherri desires to help others better understand debilitating conditions, as she shares her story and information about her illnesses. Despite her daily pain and losses, Sherri's writings and videos come to life with her humor and positive attitude. Sherri's journey and struggles for others to understand her disability have inspired her husband, Wayne, to reach out to millions of others like Sherri, through the Invisible Disabilities Association. Sherri is not a medical professional, please seek advice from your doctor before making any changes to healthcare or lifestyle.

7 Realities of the Invisible Becoming Visible with Wayne Connell: IDA Video Seminar

7 Realities of the Invisible Becoming VisibleInvisible Disabilities Association Founder and President, Wayne Connell shares 7 points about invisible disabilities and how to be a source of support to those who live with them.

This video is an excerpt from his seminar of the same name that he has given to various groups and organizations.

Wayne’s wife, Sherri lives with debilitating Progressive Multiple Sclerosis, Chronic Late Lyme Disease and Chemical Injury.

 

7 Realities of the Invisible Becoming V-I-S-I-B-L-E

V = Vast
I = Invisible
S = Society
I = Individual
B = Believe
L = Love
E = Everyone

Wayne Connell, Founder and President
Invisible Disabilities Association
http://www.InvisibleDisabilities.org

ADDITIONAL RESOURCES

http://www.InvisibleDisabilitiesCommunity.org
http://www.Facebook.com/InvisibleDisabilities
http://www.InvisibleNoMore.TV
http://www.Facebook.com/InvisibleNoMoreTV
http://www.YouTube.com/InvisibleDisability
http://www.Twitter.com/INVDisabilities
http://www.InvisibleHero.org
http://www.CleanerIndoorAir.org

All Rights Reserved
Copyright 2012 Invisible Disabilities Association

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Looks Can Be Deceiving

Kathe SkinnerBy Wayne Connell, Founder & President, Invisible Disabilities Association and IDA Executive Board Member, Kathe Skinner, LMFT

Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?

The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain.

We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.

Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.

Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.

Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.

While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.

My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me.  When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.

I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS,  so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”

Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.

Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!

Imagine the moment of deliverance from need.

Then you can imagine how I felt, looking at that car and noticing it had black interior.

Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.

Get in? No way. But did I have any choice? Nope.

Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”

I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.

Bet I didn’t look so good then.

Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.

I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.

Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.

My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.

Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.

IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?

This article was first published on Disability.Blog by Disability.gov. July 25, 2012.

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

What’s So Funny About …

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Join the Expedition

By Wayne Connell, Founder & President, Invisible Disabilities Association.

Article Excerpt: See what an amazing difference IDA is making with our Annual Honor Awards Banquets. Not only is this an amazing night for attendees, but we share our videos from the evening and article about the Award Recipients to increase awareness, education and support around the world! 

In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. This year’s banquet will take place on October 14th. This event allows IDA to honor amazing individuals and organizations from around the nation who are making a difference in the lives of people touched by illness, pain and disability. We also feature incredible keynote speakers such as National Speaker Hall of Fame Inductee Karyn Buxman, RN, MSN, CSP, CPAE; New York Times bestselling author Capt. Luis Carlos Montalván and New York Met’s World Series Champion Ed Hearn. This year we invite you to “Join the Expedition.”

Dictionary.com defines an expedition as, “an organized journey or voyage for a specific purpose.” Much time and planning goes into preparing for an expedition. Sometimes it requires learning a new language; sometimes it forges ahead into difficult places. An expedition often requires a map, unless the territory is unknown and uncharted. And of course lots and lots of cool equipment and tools are needed. Finally, an expedition usually requires a partner or a team to go with you, and a group back home cheering you on.

The problem with the expedition of caregiving or living daily with illness and pain is that you rarely have the opportunity to prepare or pre-plan. It just happens! IDA wants to help people to become “expedition ready” even in the midst of the journey.

IDA’s 5th annual banquet will feature Antarctic Mike (Pierce) and his wife, Angela, as keynote speakers. Mike and Angela have been on a very long expedition. Mike is a professional speaker, executive recruiter, avid adventure athlete, world record holder and a husband. Angela Pierce is a wife, a blogger and someone who lives daily with disability and has done so most of her life. Together, they are an amazing team!

Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging, important and worthwhile expedition, that of helping Angela manage her lifetime disability. Read more of their story on Disability.Blog.

The good news is there are a group of people and organizations from around the nation who are journeying alongside people touched by illness, pain and disability. IDA will be honoring them on this great evening. IDA honorees include:

  • 2012 Advocacy Award Honoree: Suzanne Mintz has been chosen based on her passion and advocacy as the founder of the National Family Caregivers Association. She has set the example for others by caregiving for her husband, Steven, who is living with Multiple Sclerosis. She has used her experience to inspire and advocate for other caregivers.
  • 2012 Caregiver Award Honoree: John O’Brien has been chosen based on his passion and commitment to personally care for his wife and her journey with illness. This passion for people living with illness and pain also moved John to co-found Central Coast Senior Services, a home care agency which provides professional and compassionate caregiving.
  • 2012 Corporate Award Honoree: Debbie Marriott Harrison has been chosen for her personal journey as a caregiver and champion of those living with invisible disabilities, including her own children. In addition, Debbie is an example for others in her role as Senior Vice President of the Marriott Corporation, a company that is leading the way with a disability-friendly atmosphere for both their guests and employees.
  • 2012 Founders Award Honoree: Dick Layton has been chosen based on his personal involvement with IDA’s founder Wayne Connell as a mentor and as a strategic advisor to the entire IDA organization. Dick uses his passion to help others by making a difference in their lives and their organizations and therefore multiplying his impact and reach. Dick Layton is a currently a Managing Partner at Kenton Talent Management.
  • 2012 Healthcare Award Honoree: Kermit Crawford has been chosen based on his leadership role at Walgreen’s as the President of the Pharmacy, Health and Wellness Services and Solutions and his focus on the wellbeing and health of all Americans. Kermit has led Walgreens in the development of programs and services such as the Take Care Clinics, Health Corner TV, Health Screening Tours and the Walk with Walgreens initiative.
  • 2012 Impact Award Honoree: Jan Chambers has been chosen based on her desire and passion to positively impact people living with fibromyalgia and pain through her work as the President of the National Fibromyalgia & Chronic Pain Association.
  • 2012 Inspiration Award Honoree: Bob Woodruff has been chosen because as a traumatic brain injury (TBI) survivor he inspires others with TBI to keep fighting and to use their challenges and triumphs to help encourage others. Bob founded the Bob Woodruff Foundation to honor and encourage veterans, as well as service men and women living with invisible disabilities. Bob is an amazing inspiration and is making a difference in the lives of others.
  • 2012 Invisible Hero Award Honoree: Anna Bigham has been chosen based on her work as the founder and executive director of the nonprofit organization Hidden Wounds. After enduring the tragic loss of her brother, Anna has dedicated her life to serving military personnel living with invisible disabilities by bringing them hope and inspiration.
  • 2012 Medical Award Honoree: Dr. Marshall Thomas has been chosen based on his passion to provide exceptional clinical care and research for patients living with mental health disorders through his leadership as the Executive Director of the University of Colorado’s Depression Center. Under his guidance, the Depression Center has become a recognized leader in research and treatment of depression, as well as a much needed community resource for health professionals and the public about mood disorders.
  • 2012 Perseverance Award Honoree: Angela Pierce has been chosen based on her amazing perseverance as she lives each day with illness from childhood, ongoing long term pain and life threatening injuries caused by a major climbing accident 27 years ago. In addition, despite her circumstances, Angela shares her story, as well as her struggles and triumphs, in order to encourage others in person and through the internet.
  • 2012 Research Award Honoree: Envoy Medical Corporation has been chosen based on its cutting edge research, and the creation of the Esteem®, an implantable, invisible, prosthetic hearing restoration device.
  • 2012 Volunteer Award Honoree: Frances Owens has been chosen based on her lifelong, passionate volunteerism with multiple charities serving people living daily with illness and disability, as well as for those recovering from tragedy. Frances’ current work with Developmental Pathways and the HeartLight Center is inspiring. Her volunteerism with Anchor Center for the Blind, Recording for the Blind and Dyslexic, The Children’s Hospital, The Colorado Autism Society, women’s heart health and Denver Health’s Newborns in Need is an example to be followed.

In addition, check out our great expert chats on the first ever Online True Help® Disability Web Expo sponsored by Allsup, which will be held on September 27th. Register today for this free event. Topics include:

  • “Be Expedition Ready – Learn about preparing for the journey of care giving” by Antarctic Mike
  • “Ready, Set, Thrive – Nine new rules for engaging change and managing stress” by Jeff Vankooten
  • “7 Realities of the Invisible Becoming Visible” by Wayne Connell, IDA Founder and President
  • “Communication Do’s and Don’ts for People with Disabilities” by Kathe Skinner, MA, LMFT
  • “Humor for Health & Well-Being” by Karyn Buxman, RN, MSN, CSP, CPAE
  • “Your Changing Brain – The owner’s manual to your mind” by Rick Watson

We hope you “Join the Expedition” with us this year in Denver. We believe we all need each other, and even though the journey can be difficult and lengthy, it can be endured with the help of others. IDA will continue to take the lead and provide support and guidance along the way. To register or learn more about the banquet, please go to www.JoinTheExpedition.org.

This article was first published on Disability.Blog by Disability.gov. September 19, 2012.

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Learning the Language of Invisible Disabilities

By Wayne Connell, Founder & President, Invisible Disabilities Association and Antarctic Mike Pierce, IDA Ambassador.

Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.

Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story.

 Angela and I have been married for almost 21 years. To most people, she is a very ‘normal’ looking young lady. Of course, I think she’s much prettier than average (ha ha). She drives a car, reads, has friends, is not missing any limbs, is not in a wheelchair and seems able to perform the functions of daily living, like most of us. If you were in a conversation with her or sitting next to her, you’d probably see her like any other woman her age.

Because she looks healthy, you’d likely think she was a working professional; probably a mom; someone who enjoys traveling, sports and other activities in which most people participate.

However, looks can be deceiving. You see, the truth is that Angela survived a 125 foot freefall in a rock climbing accident, breaking her bones in 168 places and requiring more than 40 surgeries. She has hepatitis C from a blood transfusion, a pituitary mass in her brain, Post Traumatic Stress Syndrome (PTSD), kidney failure, has been on dialysis and the organ transplant list and takes more medication than most households do. On the outside, Angela looks just fine.

On the inside, she’s challenged beyond description. The difficulty is that her disabilities are completely invisible, unless you see her compound fracture scars and the skin graph on her legs.

One thing I’ve learned during our 21 years together is that she has different needs and communicates about what those needs are in a very different way than I would have ever expected. During the early years of our marriage, we would fight loudly more often than I’d care to remember or admit. She would get very upset at me over things that I had not done and things I did not understand. I took those comments personally and took my shots back at her, fueling the fire further. I’ve thrown telephones, cereal boxes and other things across the room in anger. One night in a parking lot outside a bowling alley in Denver, a police officer overheard our arguing and came up to ask us if we were okay. We calmed down quickly after that.

What both of us learned after many of these arguments is that what Angela was initially upset about was not the real issue. It was something else that was related to the difficulty of living with various invisible disabilities. It was not me, anything I said or did, but what she was going through. We did not realize that we needed to grow in our ability to speak and understand a different language. I’m talking about the language of invisible disabilities.

It’s not an easy language to understand, as you have to think, be very patient, not take comments personally, listen more and not try to answer questions and solve problems immediately. Often, people with disabilities or chronic pain just want to talk in order to express themselves and let out the pressure that builds up inside them. Questions they ask, comments they make and issues that seem to bother them are not necessarily the genesis of the problem. That’s okay. I’ve learned to just let Angela get it out without me interrupting her, fixing her or commenting. This takes tremendous patience and self confidence on my part, as the knee jerk reaction is to take things too personally, wondering what I did or said wrong.”

The expedition will be long and tough, yet rewarding, as Mike has shared. The language will sometimes be somewhat familiar and other times very different. The best teachers of this language of invisible disabilities are those like Angela and my wife, Sherri, who live daily in the land of illness and pain. Learning the language is the first step to becoming expedition ready. Join the expedition!

This article was first published on Disability.Blog by Disability.gov. March 14, 2012.

MEET ANTARCTIC MIKE AND ANGELA! Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

MORE INFORMATION:

2012 IDA Honor Awards Banquet with Keynote Speakers, Antarctic Mike and Angela Pierce

Antarctic Mike’s Website

Antarctic Mike, IDA Ambassador

Angela Pierce’s Blogs on IDA

Angela Pierce’s Website – Falling Off the Mountain

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

But You LOOK Good! on Disability.gov

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

About Mike Pierce

Antarctic Mike (Mike Pierce) is a professional speaker, managing partner in a recruiting company, an avid adventure athlete, and a husband to Angela, who lives daily with disability due to a rock climbing accident. Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging and important marathon, that of helping Angela manage her lifetime disability.

Invisible No More

Invisible No More!

Shining a Light on the Incredible Perseverance and Courage of Those
Living with Illness and Pain.

It all came crashing down in 1991. First, her legs became paralyzed and then, she received a diagnosis of primary progressive multiple sclerosis (MS), followed by a 10 day hospital stay. She slowly regained the use of her legs, yet the bone-crushing pain, fatigue and cognitive impairments did not dissipate.

We met in 1992. Sherri was a customer of mine at an electronics store I was managing. Wow, was I smitten. We met again at a singles group at her church; all of the guys were surrounding her. Did I even have a chance? Afterwards, everyone went out together to a local restaurant. I, of course, sat across from her. All of the other guys who had been interested in her disappeared when they heard the words, “MS” and “Disabled.” Sherri figured she would tell me the truth right away, and maybe save her the pain of another relationship lost.

I was not deterred. I was falling head over heels in love. She had been a model, a beauty queen, an actress, a singer with the voice of an angel, a cheerleader and someone everyone liked and looked up to. To me, she was still all of these and more. She was funny and intelligent, earning three college degrees, drop dead gorgeous and caring and loving of others.

Shortly after we started dating in 1992, Sherri was also diagnosed with Late Stage Chronic Lyme Disease, which was traced back to when she was bitten by a tick while visiting Arkansas at the age of 14. She had been sick on and off since then, but no one knew why. She was still active, passionate and hard working until her body finally gave out when she was 27 years old in 1991.

We were married on September 4, 1994. We were in love. She started writing about her journey in pamphlets. She wrote about MS to help explain to family and friends about her illness. She wrote about how people didn’t understand why someone who appeared normal was allowed to park in disabled parking. She wrote about how appearances do not always tell the story on the inside. In 1996, she finally thought of a label that described her condition – she had an, “Invisible Disability.” I thought, “Wow! Your description really makes since!” Soon thereafter, I took some of her writings and posted them on a website, called The Invisible Disabilities Advocate.

Therefore, in 1997, the Invisible Disabilities Association (which was originally called The Invisible Disabilities Advocate) was launched. I had no idea that hundreds of thousands of people from around the world were dealing with their illnesses and pain, and how people did not understand and in many circumstances, believe that they had a disability because of the invisible nature of their symptoms.

Along with my wife, I wrote the booklet, “But You LOOK Good – How to Encourage and Understand People Living with Illness and Pain.” IDA has sent more than 21,000 copies worldwide. Our organization continues to grow and support people from around the world with a message of understanding and encouragement; and IDA comforts those living with illness and pain by letting them know that they are not alone. IDA is also educating families, friends, co-workers and caregivers that even though a person’s symptoms may not be visible, they are very real.

IDA reaches around the globe with stories of suffering and triumph. We created www.InvisibleDisabilitiesCommunity.org as a supportive place to share the difficulties and to encourage people touched by illness, pain and disability. Our organization recently launched our second YouTube channel, www.InvisibleNoMore.TV, which brings to life the journeys of many living with invisible disabilities.

We also recently held IDA’s fourth annual Honor Awards Banquet in Denver, and you can see the stories of the very special guest speakers on our IDA YouTube Channel.

  • Learn about Matt Barrett’s amazing story of lifelong battles with 11 types of cancer with more than 1,700 surgeries, as well as his struggles with homelessness throughout much of his adult life.
  • Listen to Lori Frisher, a cancer survivor who was once hearing impaired and through cutting-edge technology, is becoming INVISIBLE NO MORE(SM) as she hears the sounds we take for granted.
  • Be moved by the story of former Captain Luis Carlos Montalván and his service dog, Tuesday and their journey together with Post-Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI).
  • Be inspired by former World Series Champion Ed Hearn as he shares about his life after three kidney transplants and skin cancer.
  • Read about Angela Pierce who survived a 130 foot free fall in a climbing accident, as she shares about living with a Mountain of pain.

These stories and many more are chronicled, as well, on www.InvisibleDisabilities.org

“Believing a loved one when they say they are sick or in pain is the most important thing we can do. Just because we can’t see from the outside, what they are battling on the inside doesn’t mean it doesn’t exist. Belief, validation and support can give a friend or family member the strength they need to continue the fight!”

Take the time in this New Year to encourage and believe a loved one living with illness and pain. Do not allow them to live in isolation anymore. As a society, we need to love first. Join IDA in envisioning a world where people living with illness, pain and disability will be INVISIBLE NO MORE(SM).

This article was first published on Disability.Blog by Disability.gov. January 4, 2012.

JOIN US IN DENVER ON OCTOBER 14, 2012. IDA wants you to “Join the Expedition.” Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more. Visit us at: www.InvisibleDisabilities.org

RELATED ARTICLES:

About IDA

Woman’s Disability Inspires Husband to Reach Out to Others

2011 IDA Brings Awareness and Support Around the World

2010 About the Invisible Disabilities Association – IDA Founder and President, Wayne Connell

IDA’s Invisible No More on Disability.gov

IDA’s It’s All in Your Head on Disability.gov

IDA’s But You LOOK Good on Disability.gov

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Invisible No More: Leeza Gandley

Through the project, Invisible No More! the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Leeza Gandley who lives with Dysautonomia, CFIDS and other complications. Leeza was a student of Pharmacy (Pharm D. Program) and Medicine (M.D. Program) before she became sick and had to leave school before completing her studies. Leeza shared, “Now I utilize that knowledge in navigating the healthcare system — not only for myself, but also as a Patient Advocate for others.” Visit Leeza’s YouTube Channel, She Who Feels.

Learn More About Invisible No More TV Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More Order Invisible No More Wristbands

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

CEO of MasTec Helps Employee with Fibromyalgia on Undercover Boss

Jose Mas CEO MasTec Screenshot from CBS Undercover Boss

Jose Mas, CEO of MasTec, Inc. helped an employee with Fibromyalgia on the Undercover Boss show, which aired on May  11, 2012.

Jose found out one of his employees, Wendy, lives with Fibromyalgia. Wendy told Jose when he was under cover that she felt like she had lost her smile, due to damage from medications she uses for Fibromyalgia. Jose not only gave her the time off to get her teeth fixed, but said he was also willing to pay the full costs to get them fixed, no matter if it totaled $20 – $25,000.

Wendy’s husband also works for MasTec and she had shared with Jose that they are struggling with $30 – $35,000 in debt. So, Jose gave them $30,000 to pay off their current debts.

Jose told Wendy, “I am going to give you $30,000 so you can feel good about having your teeth done and don’t have to feel that is taking away from something else.”

Clip from Undercover Boss. Watch Full Episode.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

CEO of FastSigns Helps Families Battling Illness on Undercover Boss

Catherine Monson, CEO FASTSIGNS. Screenshot CBS Undercover Boss Video

Catherine Monson, CEO of FASTSIGNS was very generous to her employees on Undercover Boss, which aired on May 5, 2012.

One of FASTSIGN’s employes, Sheldon, is engaged to be married. His fiance, Michelle has battled cancer, a collapsed lung and has undergone radiation and chemo. Sheldon shared when Catherine was undercover that they are struggling financially to afford a wedding and to pay her medical bills.

At the end of the show, when Catherine revealed her identity, she told Sheldon she wanted them to have the “Honeymoon of your dreams.” She gave them $10,000. Catherine brought up Sheldon’s loyalty to Michelle and he said, “That’s what you sign up for. For better or for worse.”

Catherine told him that she wanted to also give him $50,000 to pay their medical bills. She said, “It would be my dream that I could sometime in my future find a man who would stand by me, like you’ve stood by Michelle.” Sheldon replied, “Well, everyone should have somebody like that.”

Catherine also gave $15,000 to one of her employees, Scott, so that he and his wife, Julie can spend more time at home with Julie, who has Multiple Sclerosis and their daughter Maya. She also gave them $10,000 to help with future college expenses for Maya.

Catherine’s brother, Charles Monson, was in a surfing accident when he was 16 years old, which resulted in a broken neck and paralysis from the shoulders down. Charles is the Founder of Wheels of Mercy, a non-profit organization that provides wheelchairs and walkers to those who need them!

Thank you, Catherine, for being so giving to your employees! And, thank you, Charles, for reaching out to help others in need!

Clip from Undercover Boss. Watch full episode here.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Teresa Giudice Wins 60K in Honor of Child with Kidney Disease

Screenshot from Celebrity Apprentice Interview

New York Times best-selling author and reality TV star, Teresa Giudice, is now a contestant on ‘Celebrity Apprentice,’ Season 5. Teresa appeared on Bravo’s “The Real Housewives of New Jersey” reality television show and is the author of “Skinny Italian” (Hyperion) and “Fabulicious!

Teresa is there to raise money for her charity, The NephCure Foundation (NFC), which researches the cause, improved treatment and cure for the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome.

“Teresa first encountered The NephCure at a charity event when she met a young boy who was suffering from an incurable kidney disease. As a mother herself, Teresa was emotionally affected by this boy’s story and was shocked to learn that the cause of many kidney diseases is still unknown” (Celebrity Apprentice).

The Invisible Disabilities Association (IDA) has had direct experience with two amazing men battling FSGS,  Ed Hearn and  Jason Graham.

Ed is a NY Mets World Series Champion, Author, Speaker and NCF Ambassador. Ed was the Keynote Speaker for the 2010 IDA Honor Awards Banquet. He was also the recipient of the 2010 IDA Perseverance Award. Ed’s message was extremely inspirational, as Ed has had three kidney transplants and several bouts with cancer. Read more about Ed and watch his incredible keynote, “Keep Swingin” right here on IDA.

Jason was the recipient of the 2010 IDA Inspiration Award. Jason battled kidney disease that led to a kidney transplant that failed. He was in need of another, when his health quickly diminished. Jason put up an amazing fight for many years. Tragically, he lost his life in 2011, when he also developed a rare cancerous brain tumor. Read more about Jason and watch his very touching award acceptance speech right here on IDA.

On the April episode of Celebrity Apprentice, Teresa became the Project Manager. The task was for the two teams to create a a 60 second commercial for Entertainment.com. She won $20,000 from Celebrity Apprentice and $30,000 from Entertainment.com.

Other celebrities who have participated in Season 5: Adam CarollaArsenio Hall, Aubrey O’Day, Cheryl Tiegs, Clay Aiken, Dayana Mendoza, Debbie Gibson, Dee Snider, George Takei, Lisa Lampanelli, Lou Ferrigno, Michael Andretti, Patricia Velasquez, Paul Teutul, Sr., Penn Jillette, Teresa Giudice, Tia Carrere, Victoria Gotti.

UPDATE 5/6/12 – Clay Aiken makes it into the Final Three of Celebrity Apprentice. Clay and project manager, Lisa Lampanelli won the last task. On the other team, with Arsenio Hall and Aubrey O’Day, Teresa Giudice was their project manager and was sent home. The four remaining contestants were immediately sent into one on one interviews with former Celebrity Apprentice contestants Country Singer John Rich (Season 4 Winner) and Actress Marlee Matlin (Season 4 Runner Up). When the final four returned to the boardroom, Lisa Lampanelli was fired.


Teresa talks about her charity, The NephCure Foundation


A clip from the task that Teresa took on as Project Manager

ARTICLE RESOURCES

Celebrity Apprentice. NBC.com

Teresa Giudice’s Charity. Celebrity Apprentice. NBC.com. Season 5.

Melville Boy Gets a Lift from ‘Celebrity Apprentice.’

RELATED STORIES ON IDA

Actress Marlee Matlin Raises a Million Dollars for the Starkey Hearing Foundation

Actor Gary Busey Wins 40K for Brain Injury Center

Actress Candice Accola Gives Voice to Lyme Disease

Clay Aiken Wins 50K for His Charity for Kids with Disabilities

Country Music Star, Clay Walker Diagnosed with MS

Former Professional Baseball Player, Ed Hearn, Battles Kidney Disease

George Clooney Battles Pain, Insomnia and Bouts of Loneliness

Hit Country Singer, Trace Adkins, Brings Awareness to Food Allergies

IDA Keynote Speaker, Luis Carlos Montalván on David Letterman

Kathy Buckley, Comedian, Actress, Motivational Speaker

Rocker Bret Michaels Lives with Type 1 Diabetes

Tim Tebow Makes a Difference for Youth Living with Illness and Injury

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Celebrity Apprentice: Clay Aiken is Runner Up

Clay Aiken Screenshot from NBC Celebrity Apprentice Video

Clay Aiken was not chosen by Donald Trump to be this season’s Celebrity Apprentice.

May 20, 2012. Clay Aiken and Arsenio Hall, along with their teams, were asked to create a celebrity variety show and a 30-second public service announcement (PSA). Clay and his team took on a carnival theme for their room and their show consisted of singing from Clay, Aubrey O’DayDebbie Gibson and Dee SniderPenn Jillette also did a magic act, alongside of his guest, Teller. The PSA was a very impacting spot about his charity, the National Inclusion Project (NIP). Clay and his team raised and impressive $301,000 for the NIP.

Although Arsenio and his team raised less than Clay’s ($167,000), Donald Trump chose Arsenio to be the Celebrity Apprentice. Earlier in the season, Arsenio raised $105,000 versus $60,000 for Clay.

Arsenio’s charity, the Magic Johnson Foundation not only received what he raised during his task, but also the $250,000 prize for winning. Congratulations Arsenio and MJF!

Clay’s PSA for the National Inclusion Project.

UPDATE 5/13/12 – Clay Aiken makes it into the Finals of Celebrity Apprentice. Aubrey O’Day is fired, leaving Clay Aiken and Arsenio Hall to battle it out in the finals. Clay and Arsenio are giving their tasks to raise money for their charities by planning, producing and starring in a fundraising event. They were given the opportunity to choose from a group of former Celebrity Apprentice contestants.

Clay’s Team: Aubrey O’DayDebbie Gibson, Dee Snider and Penn Jillette.

Arsenio’s Team: Adam Carolla, Lisa Lampanelli, Paul Teutul, Sr. and Teresa Giudice.

UPDATE 5/6/12 – Clay Aiken makes it into the Final Three of Celebrity Apprentice. Clay and project manager, Lisa Lampanelli won the last task. On the other team, with Arsenio Hall and Aubrey O’Day, Teresa Giudice was their project manager and was sent home. The four remaining contestants were immediately sent into one on one interviews with former Celebrity Apprentice contestants Country Singer John Rich (Season 4 Winner) and Actress Marlee Matlin (Season 4 Runner Up). When the final four returned to the boardroom, Lisa Lampanelli was fired.

Clay Aiken Screenshot Celebrity Apprentice Video

Clay Aiken on the Celebrity Apprentice for Kids with Disabilities

March 30, 2012. Clay Aiken, first runner up on ‘American Idol’ Season 2 in 2003 is now a contestant on ‘Celebrity Apprentice,’ Season 5. He is there to raise money for his charity, the National Inclusion Project.

Clay shared:

The National Inclusion Project is an organization that I helped start about eight years ago. I used to see kids with disabilities get kicked out of programs or not be allowed to go to a summer camp that I was working at because they had Autism or a little boy or girl had Cerebral Palsy and they didn’t have the ability to work with them at the summer camp. In our social settings. We do segregate. We don’t include individuals with disabilities in workplaces oftentimes and almost always,  unfortunately, in extra-curricular programs. So we work with university to help create a curriculum that teaches people how to include kids with disabilities and without disabilities in service learning projects. So, inclusive groups of kids, teenagers, will work together to do stuff in their community. We are sort of a service organization that serves other non-profits in a way (Video: Clay Aiken’s Charity).

For his first task as Project Manager ,the show that aired on March 25th, the teams were asked to throw a party for Crystal Light’s new “mocktail” beverages. For the men’s team, Unanimous, Clay volunteered to be Project Manager. For the women’s team, Forte, Aubrey O’Day was the Project Manager.

Clay and his team chose to highlight the Peach Bellini flavor and use the tagline, “Life’s a Peach.” Their party had a beach-theme, complete with sand, island music and tikki-bars. Special guests, Kathie Lee Gifford and Hoda Kotb showed up to the party and when the Crystal Light Executives arrived, Clay sang, “Under the Boardwalk.”

Although the contest seemed to be close, Team Unanimous was chosen as the winners. As their reward, Clay’s charity was to be given $20,000 from the show. As an added bonus, Crystal Light also contributed $30,000, making Clay’s contribution to his charity, $50,000.

Other celebrities who have participated in Season 5: Adam CarollaArsenio Hall, Aubrey O’Day, Cheryl Tiegs, Clay Aiken, Dayana Mendoza, Debbie Gibson, Dee Snider, George Takei, Lisa Lampanelli, Lou Ferrigno, Michael Andretti, Patricia Velasquez, Paul Teutul, Sr., Penn Jillette, Teresa Giudice, Tia Carrere, Victoria Gotti.

Clay Aiken’s Charity

Life’s a Peach

ARTICLE RESOURCES

American Idol

Celebrity Apprentice

Clay Aiken

Crystal Light

National Inclusion Project

Video: Life’s a Peach. Celebrity Apprentice. Season 5. 2012.

Video: Clay Aiken’s Charity. Celebrity Apprentice. Season 5. 2012.

RELATED STORIES ON IDA

Actress Marlee Matlin Raises a Million Dollars for the Starkey Hearing Foundation

Actor Gary Busey Wins 40K for Brain Injury Center

Actress Candice Accola Gives Voice to Lyme Disease

Country Music Star, Clay Walker Diagnosed with MS

Former Professional Baseball Player, Ed Hearn, Battles Kidney Disease

George Clooney Battles Pain, Insomnia and Bouts of Loneliness

Hit Country Singer, Trace Adkins, Brings Awareness to Food Allergies

IDA Keynote Speaker, Luis Carlos Montalván on David Letterman

Kathy Buckley, Comedian, Actress, Motivational Speaker

Rocker Bret Michaels Lives with Type 1 Diabetes

Teresa Giudice Wins 60K in Honor of Child with Kidney Disease

Tim Tebow Makes a Difference for Youth Living with Illness and Injury

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

‘American Idol’ Contestant, Heejun Han Loves Working with Special Needs Children

Screenshot from Audition Video Copyright 'American Idol'

SEE LATEST Updates and Videos Below!

Season 11 ‘American Idol’ contestant, 22 year old Heejun Han is originally from Korea and now lives in Flushing, New York. Heejun said:

I was inspired to do this audition, because I work at a non-profit organization for kids with special needs. I wanted to prove to them that if you really, really want something and you really really believe in it, you can be someone” (Heejun’s Interview After His First Audition).

Later in the competition, Heejun admitted:

I had a bad depression, but the kids and the organization just pulled me out from there, so I just had to give something back to them. Without those kids I wouldn’t even have motivation to come out here and do all this kind of stuff. I’m not only doing this for myself. I could say that 100%, this is for the kids and it just makes me so happy” (Sing for Your Life – Heejun Han).

Heejun auditioned for ‘American Idol’ in Pittsburgh. Before his auditions, Heejun said about the other contestants, “I thought I was a little good, but they’re just crazy good” (Audition in Pittsburgh). Heejun sang, “How am I Supposed to Live Without You” by Michael Bolton.

He seemed a bit nervous, but delivered a very smooth and heartfelt song and the judges were absolutely impressed! Steven said, “Heejun, man, you sing great” Jennifer agreed, “You have a beautiful voice! I love you!” and Randy added, “On a serious note. I am really impressed and shocked!” Steven chimed in again with, “Ya, I think you’re really great. I think you could be an ‘American Idol.” Heejun was taken back by the comments and said, “Wow! Nobody told me that kind of stuff!” (Heejun’s Audition in Pittsburgh).

All three judges, Randy JacksonJennifer Lopez and Steven Tyler sent Heejun straight to Hollywood!

Heejun has a very dry and sarcastic sense of humor, talking about everything from the other contestants being so talented to how “pretty” and good looking they are. He said in Hollywood:

I got here and everyone’s SO tall, SO pretty. Even the guys are so pretty, I don’t know why. I don’t know what they eat, but they’re so good looking!

At one point, Ryan Seacrest asked him what he was sweating in the competition. Heejun answered, “Mostly water.”

Heejun seemed to sail right through Hollywood week, except for his personality clashes with country singer, Richie Law. Although the group seemed to be challenged, their performance got them all onto the next round. Again, Heejun’s dry sense of humor came out as he talked about the “cowboy” in his group. Nonetheless, he did apologize to Richie and his parents for his behavior on camera.

Heejun made it in the Top 24.  During his interview he talked about how excited his mom was when he told her the news! Then Heejun added:

The greatest thing that I am worrying about is a “stereo-type” that they’re going to have towards me; like an Asian stereo-type. But I hope I can break that. And if they can just see me as a singer, not as a type of person. Don’t watch the music, but listen to the music. You know?”

Heejun, we think every person has something unique and special about them. There is only one you; embrace all you have been given and all you are!

UPDATE 3/29/12 – Sad to report that Heejun was sent home tonight. He was in the Bottom 3 with Hollie Cavanagh and Skylar Laine. We are sad to see you, go Heejun! Congratulations for making it to the Top 9, for staying true to yourself and for encouraging those around you to reach out to others!

Heejun said during his Curtain Call Interview:

The reason I started out this competition was to prove that if you truly believe in yourself you can become someone regardless of who you are. And if you do something for others, the outcome is something beyond imagination. I hope I impacted at least one person. So, go out there and help other people, because they’re not far away, they are right next to you in your neighborhood. Alright guys! Stay crazy, stay humble, stay cool, stay relaxed, stay who you are … cuz this is just the beginning. Let’s do this together again!

UPDATE 3/28/12 – After Heejun had been given lots of flack about his not “taking the competition seriously,” he came back full force. Heejun won’t stop being entertaining self, but the judges and mentors encouraged him to get serious and show what he can do. So, Heejun did just that with this very appropriate song and message, “A Song for You” by Donny Hathaway during the Top 9 performance show. The judges loved it.

UPDATE 3/22/12 – Heejun was in the Bottom 3 this week for the first time. Joining him was DeAndre Brackenstick and Erika Van Pelt. Although Erika belted out an amazing vocal and the judges loved it, she was sent home.

UPDATE 3/21/12 – The Top 10 perform. Heejun broke way out of his ballad streak and took over the stage. It was Billy Joel night and Heejun sang, “My Life.” The judges thought it was entertaining and fun, but didn’t show off his voice as they know he can sing.

UPDATE 3/15/12 – Although during the performance night, Randy pegged Heejun for being at risk for going home, Heejun was not even in the Bottom 3. Instead, Heejun made it into the coveted Top 10, allowing him to go on the American Idol tour.

UPDATE 3/14/12 – Heejun sang, “Right Here Waiting” by Richard Marx at the Top 11 show.

This show turned out to be the Top 11, because Jermaine Jones was removed from the competition for not having been forthright about his past history with four outstanding warrants from the police. According to the Huffington Post, three were for giving the police a false name (once when they responded to a fight, once from when he was riding in a car that was pulled over and another time when he was driving with a suspended license). The other was for not showing up for a court date.

UPDATE 3/8/12 – Out of the Top 13 (7 guys and 6 gals), Heejun was not in the bottom 6 (3 guys, 3 gals). He whisked right through again!

UPDATE 3/7/12 – Heejun sang, “All In Love is Fair” by Stevie Wonder for the Top 13 Performance night. Jennifer said, “I love you! I loved you from the first time you sang for me and I still love you now. ” Steven said, “Heejun! Fantastic! I love your voice, man. Somethin’ about it’s real special. Keep it up.” Randy added, “Dude! It wasn’t perfect, but it was REALLY good!”

UPDATE 3/1/12 – Heejun made it into the Top 10 by America’s votes! Joining him are Colton Dixon, Elise Testone, Hollie Cavanagh, Jermaine Jones, Jessica Sanchez, Joshua Ledet, Phillip Phillips, Shannon Magrane and Skylar Laine. Then the judges let six more kids “sing for their lives.” The judges each picked one more contestant to join the Top 10, to make a Top 13: Jeremy Rosado, Erika Van Pelt and Deandre Brackensick.

UPDATE 2/28/12 – Heejun sang, “I’m Loving Angels Instead” by Jessica Simpson. Heejun did a great job! The judges agreed, but commented that the song didn’t show off all of his capabilities. As promised, an additional male vocalist was added to the round. Formerly disqualified, Jermaine Jones was asked to return for another chance. On Wednesday, the Top 12 girls will have a chance to sing. On Thursday, the Top 25 (previously the Top 24) will be narrowed down to the Top 12. Ten will be chosen by America’s votes and two by the judges.

UPDATE 2/23/12 – Heejun sails into the Top 24 with his rendition of “New York State of Mind” by Billy Joel.

Also going into the Semi-Finals are Aaron Marcellus, Adam Brock, Baylie Brown, Brielle Von Hugel, Chase Likens, Chelsea Sorrell, Colton Dixon, Creighton Fraker, Deandre Brackensick, Eben Franckewitz, Elise Teston, Erika Van Pelt, Haley Johnsen, Hallie Day, Hollie Cavanagh, Jen Hirsh, Jeremy Rosado, Jessica Sanchez, Joshua Ledet, Phillip Phillips, Reed Grimm, Shannon Magrane, Skylar Laine. On Tuesday February 28th, they will be announcing a Surprise Save, as they add another boy into the Semi-Finals who was previously sent home.

UPDATE 2/16/12 – Heejun moved on to the next rounds as the contestants went from 70 to 42.

UPDATE 2/15/12 – Heejun survived Hollywood week and moved on to Las Vegas!

UPDATE 2/15/12 – Heejun made it through group rounds! 97 other contestants joined him, including Jennifer Malsh, Cari Quoyeser, Reed Grimm, Nick Boddingtom, Creighton Fraker, Aaron Marcellus, Jen Hirsh, Shannon Magrane, Joshua Ledet, Brielle Von Hugel, Amber Holcomb, Mathenee Treco, Ariel Sprague, Eben Franckewitz, David Leathers, Jr., Jeremy Rosado, Gabi Carrubba, Johnny Keyser, Heejun Han, Jairon Jackson, Richie Law, Phillip Phillips, Colton Dixon, Adam Brock, Skylar Laine and many more.

VIDEOS:


Heejun’s Farewell Message

Heejun sings, “A Song for You” by Donny Hathaway during the Top 9 performance show

Heejun in the Top 10 Singing, “My Life” by Billy Joel.


Heejun in the Top 11 Singing, “Right Here Waiting” by Richard Marx.


Heejun Han in 60 Seconds


Heejun Singing “All In Love is Fair” by Stevie Wonder During the Top 13 Performance Show


Top 13 Group Singing “As” by Stevie Wonder.


Recap of Top 13 Performance Night


Heejun’s Interview After Making it Into the Top 13


Heejun sings, “Angels” by Jessica Simpson in the Top 24


Recap of Top 12 Guys, Plus the Surprise Addition of Jermaine.

Heejun Han Interview After Being Selected for the Top 24.


Heejun’s Interview and Solo in Las Vegas, Before the Top 24 was Announced. Heejun sang, “New York State of Mind” by Billy Joel.


Las Vegas Round – “I Only Have Have Eyes for You” by The Flamingos. Neco Starr, Jairon Jackson, Heejun Han and Phillip Phillips.


MIT aka “Most International Team” Group Night in Hollywood Singing, “Broken Strings” by James Morrison. Richie Law, Jairon Jackson, Heejun Han and Phillip Phillips.



Recap of Hollywood Week – Group Night


Hollywood Week – Round 1


Hollywood Week – Moments That Make You Smile


Heejun’s Interview After His First Audition.


Heejun’s Audition in Pittsburgh. A Must See!


Recap of Pittsburgh Auditions

ARTICLE RESOURCES:

Quotes from Videos Posted on This Page.

Photo: Screenshot from ‘American Idol’ Audition Video. Copyright ‘American Idol.’

American Idol Official Website

ADDITIONAL RESOURCES:

Heejun Han’s Facebook Page

MilAl Mission in New York

ADDITIONAL STORIES on IDA:

Shelby Tweten, Teen with Bipolar on ‘American Idol.’

Living with Asperger’s and Tourette’s: James Durbin Contestant on ‘American Idol.’

Living with TBI: ‘American Idol’ Contestant, Chris Medina, Stands by Fiance

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!