The Loneliness of Illness and Pain

Loneliness-Illness-Pain-Invisible-Disabilities-Association“You’re lucky you don’t have to work!” “You’re just giving up!” “You need to get out more!”

When we break a leg, are we better off hopping on it or using crutches? Right after having major surgery, would we recover better if we went hiking or if we rested a bit in the hospital? We all know the answer to those questions. Otherwise, there would be mountain slopes instead of gurneys outside of every operating room.

When dealing with a broken leg, it heals and the person returns to life as usual. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.

Although we might think our loved ones with invisible disabilities are lazy and sleep all day, they may be having difficulty sleeping and are feeling sleep deprived. Thus, we need to allow them to rest whenever possible. After all, they are busy trying to maintain their condition and often have to push themselves hard to accomplish a few simple chores. With each activity they give their effort to, another could be forfeited and a price paid. After being limited for a while, they will begin to learn how to juggle their efforts and will discover what and how much activity causes them to hit a wall. [Read more…]

Don’t Be Afraid of Life’s Uncertainties

Doctor VisitThis past week Mike and I went to see my kidney doctor, as we do about every 4 months.  The purpose of the visit is to monitor my kidneys and how they are doing.  It’s always like sitting on pins and needles until he reads the numbers from the blood test, which tell you everything.  Fortunately, this past week the numbers were good.

I’ve been off dialysis now for almost three years.  My kidneys started functioning to the point where I did not need dialysis any more.  This is not common and I am very fortunate. However, living with constant uncertainty is not easy.  Many people have illnesses that have no treatment options. I know firsthand how difficult it is to wake up every day and not know my medical future.  Being afraid of this is a normal response.

How I have learned to cope with fear is by talking about it with Mike or someone I know well.  There is something very healthy and therapeutic about vocalizing my struggles.  This has helped me also to accept the facts that I can’t change.

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.

A Love That’s Unbroken

Valentine HeartToday is Valentine’s Day. Many people will celebrate it with the one they love. I asked my friend, relationship expert and New York Times best-selling author of 1001 Ways to Be Romantic, Greg Godek, for his thoughts on “love.” This is what he shared.

“It’s all about love (just consult the Bible or The Beatles). But if love isn’t expressed on a regular basis, it withers (just consult divorce rate statistics.) This is where romance comes in (just consult my book, 1001 Ways to be Romantic). Romance is the expression of love. Romance is the action step of love. Now, here’s the secret that is hiding in plain sight: Romance is easy! Romance is really just creativity applied to your relationship. Romantic gestures don’t need to be grand or expensive. Actually, the best romance is the most heartfelt – the gesture that shows you’re thinking of your partner, the little gift that shows you really understand and appreciate him or her. Romance keeps love alive. And while love is desired by everyone, it is absolutely critical for couples who are dealing with invisible disabilities. You need love to sustain you through experiences that other people can’t even imagine. And in order to keep love alive, you have to nurture it every day. Every day. Romance: It’s not just for Valentine’s Day anymore.”

Greg points out that, “it’s all about love.” But what kind of love is needed to marry someone who is chronically ill or in pain? I had no idea that marrying someone who had a disability was a rare occurrence. Yet another great friend of mine, Peter Strople, told me that I was his inspiration because I married my wife, Sherri, who was already living with the debilitating effects of multiple sclerosis (MS) and Lyme disease and unable to work anymore, when I met her.

I know my wife is my inspiration, but I never thought that I was anyone else’s inspiration. Why wouldn’t I have married Sherri? She was and is funny, smart, beautiful, insightful and creative. And did I mention beautiful? I married HER. She is not an illness, she has an illness. I always tell the guys who are in disbelief, “You would have married her, too!” I’m just glad I got there first and besides, I was just getting the “in sickness” part of our vows out of the way.

We need to value people for who they are and not what they have or don’t have with regard to illness and pain. I try to live daily by Peter Strople’s great quote, “When in doubt…love.” Love first and love last.

This concept seems so rare sometimes, but after 18 years of marriage, I am starting to see some hope. I met a young couple this past weekend, Stephen and Sarah Sicola. They started an amazing company that has awesome deserts which are actually healthy for you. If you are in Austin, TX, make sure to check out Taste, AHA! Their company was born out of Sarah’s struggle with an unknown chronic illness. Stephen wasn’t deterred by Sarah’s illness; in fact, it became his mission to not only marry Sarah last December, but also to use their journey to help others with health needs. And those of us with a sweet tooth are mighty grateful he did!

IDA ambassador Antartic Mike Pierce married his wife Angela after she had a horrific climbing accident 27 years ago that broke her bones in 168 places (although you wouldn’t know it by looking at her today because of the invisible nature of her injuries).  Mike said “I do” 21 years ago knowing that Angela was not her injuries, but an amazing survivor. Mike valued her for who she was, not what she had endured.

Laura Hillenbrand, New York Times best-selling author of Seabiscuit and Unbroken, has lived daily with chronic fatigue syndrome for the past 25 years. Laura shared in a blog by Tara Parker-Pope that ran in The New York Times on Feb 4, 2011 how she manages her life with illness. She notes that her husband married her knowing full well the struggles she faced because of her disease.

“I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.”

Relationships with someone who is ill can bring extra challenges. Couples need to take time together, away from discussions of medical issues and bills. They may not be jet-setting off to a romantic island, but they can still do simple things like setting aside regular nights to have a special dinner, watch a movie or play a game. Sharing conversation about things outside the everyday problems and enjoying activities they have in common is essential to maintaining a thriving relationship.

The couples in the examples above knew that their married life would probably not be the same as that of couples who do not face illness or disease, but that the relationships were worth the journey. The husbands believed that although their wives were quite fragile in some ways, they were also extremely strong with many amazing traits to offer.

As in the story of Seabiscuit, people need someone to believe in them and to love them. Love helps in the mending process and makes all the difference. People are worth loving, especially while enduring pain and illness. When I show my wife the love and care she needs, her “brokenness” feels unbroken.

Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1996 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.

Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv.  You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member on www.InvisibleDisabilitiesCommunity.org.

This article was first published on Disability.Blog, by Disability.Gov on February 13, 2013.

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 …

Don’t Judge by Appearances

Disabled Permit OnlyBy Wayne Connell, Founder and President of the Invisible Disabilities Association 

Have you ever seen someone get out of a car parked in a space reserved for people with disabilities, who did not LOOK disabled? Did it make you feel very uncomfortable or even upset? Did you let them know of your disapproval by giving them a dirty look or yelling at them?

Well, you are not alone. Many people are very disturbed by the sight of a seemingly mobile person taking the space of someone who is truly in need of it. After all, we want to protect the rights of people for whom these spaces are reserved!

However, in our efforts to help those who deserve these parking spaces, we actually may be hurting someone who has a legal right and a legitimate need to park there. How can this be true, you ask? Isn’t it obvious who does and who does not have a disability?

Let me Sherri Connell on Scooter 2.share the following story about my wife, Sherri.

It was a weekend afternoon, and Sherri wanted to head to the department store to pick up some items. She knew that driving would be tough enough, but she felt spending time with her niece would be worth the difficulty of the trip.  

Sherri and her niece pulled into the store parking lot, and she drove around until she found an accessible spot near the front. Sherri pulled out her accessible placard and placed it on the back of the mirror. She then proceeded into the store with her niece to shop.  

Once inside, they looked for an electric motorized cart. They located one and proceeded around the store. Of course, being in her late twenties and looking much younger, Sherri would elicit stares from people wondering why she was using the cart. Some even wondered out loud, especially children who would point and ask “Mommy, what’s wrong with her?”  

Why anyone would ride one of the store scooters unless they really needed it is beyond me. Sherri’s scooter at home goes 8 miles an hour and has head lights, tail lights and a headrest. The mall carts crawl along slowly, and everyone stares at you.

Sherri and her niece finished up their shopping and returned to their car. Sherri started the car and looked in the mirror and noticed a police car with its lights flashing right behind her, blocking her in. There was an immediate knock on her window. Startled, she rolled down her window and an officer stated that she was not allowed to park there, because she was not handicapped.  

Sherri said that the placard was hers and she handed the officer her license, her placard registration and a multiple sclerosis (MS) card. Sherri mentioned that she had the right to park there, because she was disabled with MS and had gotten approval from her doctor and the motor vehicle department.  

The officer replied, “I don’t care how many multiple problems you have, you can’t park there. I saw you walk inside and back to the car, and you looked fine to me.”  

After about 10 minutes of trying to explain her disability to the officer, Sherri started to get quite frustrated. She then asked very politely for the officer’s name and badge number, and if he would please move his car. Of course, her nervous system started to work overtime and her brain went into fight or flight mode. Luckily for the officer, he said he would move his car. Then he stated, “See those people over in that Cadillac, they are not handicapped either.” 

The conclusion of the story is that the officer was eventually reprimanded for the way he was hassling people who had the legitimate right to park in accessible parking.

The general qualifications for accessible parking spaces include those using wheelchairs, walkers, crutches, canes and assist dogs. Nonetheless, most of us do not realize they also include certain impaired functions of the heart or lungs, as well as conditions which are worsened to a specified impairment by walking a certain distance.

People with a variety of disabilities may qualify to park in these spots. Moreover, not all impairments are readily evident to the onlooker. Because of this, we refer to conditions which cause debilitating symptoms that are not so apparent from the outside as “invisible disabilities.”

There are millions of people who are forced to contend with serious illnesses, injuries and circumstances, which have left them with mountains to climb every time they take a step. Most people do not realize a person can have hindrances on the inside, which may not be visible on the outside. Their restrictions may not be conspicuous at a glance, but their pain, limitations and inability to function normally can be debilitating.

What may seem easy to you may seem like a 14,000 foot hurdle to them. Many even collapse in stores, become very dizzy and weak or even black-out. Being able to park close to the entrance of a building when they need to allows them to run an errand they otherwise would not have been able to conquer.

At any rate, the purpose of accessible spaces is to assist those with many types of disabilities and health conditions. For those with various types of limitations, the spots help make it possible for them to shop or visit the doctor.

How do you know who can park in an accessible space and who cannot? Look for a temporary or permanent placard in the front window or a disabled license plate. These items are received after an application, which is completed by a patient’s doctor, is approved by the Department of Motor Vehicles (DMV).

Each state’s DMV has specific guidelines and requirements the person must meet in order to receive a placard or license plate. Most states take into consideration the impairments due to certain conditions, as well as the implications stemming from aggravations of these conditions. Therefore, if a person is issued a license and is displaying it, then they have the legal, medical right to park there.

The following are few assumptions regarding accessible parking:

  • Assumption 1 – Drivers can simply request a placard from the DMV without any proof or documentation.  

Drivers cannot request an accessible plate or placard without a form completed by a licensed physician and with their verifiable license number.

  • Assumption 2 – Doctors are irresponsibly filling out forms for patients. 

Doctors have no personal gain by doing so.

  • Assumption 3 – Drivers are borrowing a placard from a relative. 

Many people believe this happens often, but do not personally know anyone doing so. At any rate, we cannot assume someone is using a placard that does not belong to them, because they do not “look” like they have a disability.

If someone personally knows an individual who has stolen or borrowed a placard, they can file a complaint with the DMV. If we have further concerns with the application and qualification process, we should consider using the legislative process to address them, rather than confronting individuals in a parking lot.

Chances are the person displaying a placard or plate is in fact parked legally and needs the space for physical and/or medical reasons. As you can imagine, it is difficult enough to live with such illnesses, injuries and disabilities that wreak havoc in one’s life without being harassed every time one needs to go shopping or to the doctor. Finally, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend may be standing right in front of you!

This article was first published on Disability.Blog by Disability.gov. October 31, 2012.

Photo courtesy of Hernando County, Florida Tax Collector

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

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 …

 

Ready, Set, Thrive with Jeff VanKooten: IDA Video Seminar

Jeff VankootenSeminar with IDA Executive Board Member, Jeff Vankooten, Speaker and Trainer. Jeff also lives with Bipolar Disorder. Join Jeff for some insightful tips on thriving in life!

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 Jeff Vankooten

Jeff Vankooten is a professional speaker who helps people thrive in disruption and change. He also coaches people over 40 who want to harness their life’s experience into talks and products that leave a legacy. He is a native of Denver, Colorado where he lives with his wife, three kids and really big dog.

Be Expedition Ready with Antarctic Mike: IDA Video Seminar

Be Expedition ReadyIDA Founder and President interviews Antarctic Mike (Pierce), Speaker, World Record Holder and Caregiver to his wife, Angela.

Mike takes what he learned from his extreme sports and applies them to his life with a spouse living with disabilities. Don’t miss Mike and Angela’s incredible story of perseverance and love!

Interview by Wayne Connell, Founder and President
Invisible Disabilities Association
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 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.

It’s All in Your Head

It’s all in your head!” What a familiar refrain for those living with chronic illness, pain or disability. Doctors, friends, co-workers and family often make this statement when they can’t “see” what you are going through or find a diagnosis. The invisible nature of many illnesses and disabilities creates an atmosphere of suspicion or disbelief, even by those who are closest to you. People may say, “It’s all in your head” to imply that the person is just making up or exaggerating his or her condition. Many people live with the stigma of this label. Some even feel shame and believe so much that they themselves are to blame that they take their own lives.

Maybe it is “all in your head.” There are many conditions that exist as a dysfunction or disease of the brain. Depression, Alzheimer’s, schizophrenia, bipolar, autism, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), epilepsy, dyslexia, multiple sclerosis, Parkinson’s and ADHD to name a few. These are real disorders and diseases even though they are unseen, and in many cases go undiagnosed or misdiagnosed for years.

Jeff Vankooten, a professional speaker and Invisible Disabilities Association executive board member shares his story below:

I have bipolar disorder. It has been my constant companion most of my life. It’s like a storm cloud that hovers nearby threatening every day to rain. I’m a different person now than I was before it “kicked in.” I’m more serious and less jovial. I’m more guarded with people. I mistrust my ability to make decisions. The varying highs and lows have created an inconsistent approach to life. Yet, in some ways, it has been a blessing. That may sound counter-intuitive, but I am a richer person because of it.

Here are what I find to be the benefits of living under the description of bipolar disorder:

Depth of Empathy: I can uniquely understand the despair of others, and listen with an attentive ear to those who are suffering. That depth of empathy resonates with people who seek me out to be a compassionate ear and persistent source of hope. God has used this illness and redeemed it for the benefit of others.

• Strength of Relationships: When I was in college, my roommate learned how to monitor my emotional health. He was not intimated by, or afraid of, my invisible disability. When he sensed I was beginning to spiral into depression, he would get me up and we would walk around the neighborhood together. The walks were special because he would always provide “Swisher Sweet” cigars. They are thin, short cigars with a flavored plastic tip. I’m not sure why, but they played a big role in my recovery. Regardless if you have an invisible disability or not, ask yourself who or what are your “Swisher Sweets”?

Though having bipolar disorder has strained some relationships and ruined others, the one with my wife has been solidified. Often marriages dealing with spousal bipolar end in divorce. It can be too much and take its toll on the stability of the relationship. It hasn’t been easy. Nothing of significance ever is. But my wife’s “Swisher Sweets” of patience, compassion, and yes, a swift kick in the butt from time to time, has been invaluable to my life. She gives me the strength to carry on and the joy to participate in life. I love her deeply.

• Embracing of Moments: Depression has a tight logic. I can make a pretty convincing case as to why everyone ought to be bummed out. It’s critical to me that I don’t stay in my argument. I need to break through the closed system of despair by embracing each moment of every day that makes up the totality of my time. I relish the moments spent with my children and friends. I savor every dinner and I enjoy every ride at the amusement park. They are all precious moments.

Education is a real key in learning about the illnesses people are living with each day. The best way to get this education is to ask the people with the disorder or disease themselves. Take time to learn the language of invisible disabilities. Take time to listen and not pre-judge. Be a friend and comforter, not an accuser. We all need to make it a safe place for people living with brain illnesses, disorders and disease to share their difficulties and triumphs. Let’s remove the stigma and shame and be supportive in any way we can.

They can’t just “get over it” or stop being depressed. If someone breaks an arm or a kidney fails, we don’t tell them to simply “snap out of it.” They need real help, and we need to make this world a safe place for them to ask for and to receive it. By listening, learning and loving, we can help them be Invisible No More!

By Wayne Connell, Founder & President, Invisible Disabilities Association, and Jeff Vankooten, Professional Speaker and Invisible Disabilities Association Executive Board Member.

This article was first published on Disability.Blog by Disability.gov. May 30, 2012.

RELATED ARTICLES:

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 Jeff Vankooten

Jeff Vankooten is a professional speaker who helps people thrive in disruption and change. He also coaches people over 40 who want to harness their life’s experience into talks and products that leave a legacy. He is a native of Denver, Colorado where he lives with his wife, three kids and really big dog.

Walking Out Your Front Door Is The First Step Up Your Mountain

Since my accident in 1985, I have been through some very difficult times.  There have been many days when I’ve felt fearful to “walk out my front door.” However, the focus of this blog is to help you as the reader understand that when you push through fears and “walk out your front door,” it changes your focus from what you can’t do to what you can do.

Here is an example while I was on a recent trip to Colorado.  I stayed with my sister Marcia.  During this visit, we had decided to have our nails done.  However, she could not go due to the fact that she had to work.  I decided to treat myself and get my nails done without her.  This was awkward, as I was already in an unfamiliar place and was somewhere that I had never been to.  I made the decision to “walk out her front door.”

I was under the lamp waiting for my nails to dry when I noticed a woman sitting next to me and complimented her on her nails.  We had some small talk during a big hailstorm.  I was concerned about leaving and going to another salon to get my hair washed because the rain was pouring down like crazy, and I did not have a car.  This woman, whose name I still did not know, offered to not only give me a ride, but told me she would move her car for me and opened the umbrella right in the store.  Going outside in the pouring rain and hail, I did not get a drop of water on me thanks to this woman.

This was a complete stranger who did this for me.  She saw that my hands were shaking and asked if I took prednisone, a common prescription drug for tremors.  I told her that I did not take it, but I knew what it was due to my kidney disease (prednisone is also prescribed for kidney disease patients).  She asked me about my illness.  I told her “it is a long story.”  She wanted to hear about it, so I told her about my rock climbing accident.  After I had shared my story, she opened up about an illness that she struggles with.  I invited her to the 2012 IDA Awards Banquet and mentioned that my husband and I were the keynote speakers.  She said that she really wanted to come.  She eventually told me her name, which is Suzanne.

What I learned through this is that you can “walk out your front door” and make a difference in a stranger’s life.  When you live with an invisible disability, you may be pleasantly surprised by the impact you can make when you tell someone your story and what it has taught you.  Many strangers that we could meet every day have challenges like us, and they are looking for someone to talk to.  They need us as much as we need them.  That is why an organization like the IDA can be so helpful.

The key to “walking out your front door” and moving forward is to not only go outside, but to meet people and have meaningful conversations with them.  My meeting Suzanne in an unfamiliar place and not being afraid to tell my story, led to a meaningful conversation and a new friend.  This was worth “walking out my sister’s front door.”

OK, here is the conclusion: Come to the 2012 IDA Awards Banquet on Oct 14 in Denver and you’ll not only hear my story, but you will meet many people and hear many inspiring stories from those who “went out their front door.”

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.

My Mother’s Day Climb

Happy Mother’s Day to all the moms out there. It is a very special day for everyone who has children and families.  However, for some of us who may have lost our mother or possibly a child, it is a very difficult day.  It is also difficult for those of us who do not have children, especially those who do not or cannot have children due to the fact we have a disability.  In addition, we need to remember that some mothers are spending their special day at a hospital or other facility, tending to a child who is seriously sick or injured.  This is what my mom experienced for many of her mother’s days after my accident in 1985.

I am grateful for my mom and happy for my friends and family who are moms.  However, there is still a part of me that feels a void since I am not a mom and will never have my own child.  I am reminded of this when someone asks, “do you have children?” At that moment, my heart drops and I say, “no, I do not.” The decision I made to not have children is just one example of how the damage from my rock climbing accident continues to be a daily challenge.  If you met me for the first time, you’d never know that I live with several invisible disabilities.  As a result, I have had to make many difficult choices, including not having children.  I have wrestled with this for 27 years.

I know that there are many women who cannot or choose to not have children, due to health problems and disabilities.  The solution is to find something else that fulfills the void to want to take care of someone or something.  I’ve found different avenues to fulfill my desire to nurture and care for others.  For example, I’ve been a volunteer at local colleges helping students transition into adulthood, worked with young adults who have special needs, have taken care of pets at a local pet store,  and I keep in touch with my godchild and her mom.

Even though many women, including myself, do not have children, there are opportunities to get involved in other people’s lives and make a difference.  It is not a substitute for my own kids, but it is very rewarding and takes the sting out of the wound.  For those out there with severe disabilities, invisible or not, nurturing a child, friend, family member or pet can be just as rewarding.  A simple phone call, email or sending a card, can make a big difference, not only to the person who receives the call or note, but to the one who sends it.

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 Only Disability is YOUR Bad Attitude!

Kick off your shoes and stay awhile.

It sometimes feels like there are few places where people with visible conditions are welcome – and accepted as they are.

Medical settings are often the most welcoming and comfortable places known to those of us with visible conditions. The larger, outside world has way too many issues with the likes of us.

Case in point: a mere one hour time span in the life of…. namely, yours truly.

It happened a couple weeks ago. I was minding my own business, going about my day in the usual way. Nothing out of the ordinary: a professional organization’s meeting, getting in and out of my car and running an errand. Doesn’t seem like it would be all that memorable.

But it was – and not in a warm, fuzzy kind of way.

No, the unfuzziness started early in the morning. Toward the end of a monthly mastermind meeting for speakers and authors that I co-founded, a gentleman who I’ve known for years uttered a showstopper.

He’s known for espousing the power of attraction. All well and good, until he stepped over a line – clearly marked with warning flares.

He was going off in his usual manner, instructing us in the finer points of thinking our way to success. Never mind the heavy lifting of running a business. It would take care of itself if we but thought the right thoughts.

At which point, he turned to me. “This applies to health, too.”

He continued, addressing the larger group again. “I have so many friends with arthritis who whine and complain about how bad it is and how much it hurts. Well, of course it does! That’s what they’re thinking about all the time!”

Apparently not yet sensing – or thinking about – the sudden deep freeze emanating from my pores right next to his, he looked at me and further explained, “You probably didn’t realize the connection.”

The deep freeze deepened. “Ohhhhhhhhh, you’ve told me numerous times.”

Momentary taken-aback pause. “I have?”

“Hmmmmmmmmmmmmmmmm.”

Perhaps it was the engulfing silence from me or from my fellow attendees. Perhaps it was the ice cold steel clad stare from my eyes to his, the stare coined the Harty Glare from my long-time friend Lynne. Perhaps a combination. No matter. It shut him down. Perhaps ‘thinking’ it so, does work.

Nonetheless, the best comeback came to me later in my car. What’s with the perpetually delayed response time?? What I should have said is, “How many seven year old kids think about getting rheumatoid arthritis – and then do?? Huh, huh?? Answer me that one, ‘O Think and It Will Be So, Boy.’”

But before I had a chance to think that delayed thought, another something happened as I was getting into my car following our hastily-ended meeting.

Just as I was plopping my irritated self into my car outside the restaurant, a woman walked up to me while my door was still open. “Hey. Lady.”

She looked harmless enough, yet I’m always a little cautious.

Calmly, she proceeded, as though this was the most natural thing she says every day to strangers: “Hey, I just wanted to tell you that when I saw you walk past me inside the restaurant, I could see that you have the mark of the beast on your forehead.”

I was soooo not in the mood to put up with yet another lunatic. My pronounced limp often seems to give strangers an assumed license to comment on any aspect of my physicalness. But this was a whole new direction.

I reached for my door, eye-roll in full swing. She kept up the luna-babble. “You probably picked it up at (insert name of nearest big box store). A lot of people get it there.”

“Nooo, I don’t shop there.”

“Ohh! Then, you must have gotten it at (insert name of large regional grocery store chain). People sometimes get it there, too.”

“I don’t shop there, either.”

“OH, well. Umm, I really feel that God is going to heal and lengthen your legs this afternoon!”

“He already did.”

“Ohhh, well, that’s great.” Door is almost slammed shut…. “Have a blessed day!” Seriously? I’m trying, but dealing with the likes of you cuts into the feel of any blessedness.

No longer in the mood to deal with the world at large, all I wanted to do was go home, alone. But my cat wouldn’t appreciate me not stopping to refill his food supply.

So I drove to the nearest (insert name of big box pet store here). As I walked in, another customer preceded me by five paces. The store’s door greeter, beaming, chirpily welcomed her. The greeter turned her head, saw me, and any lingering smile vanished in an instant. Her mouth clamped shut. I was awarded the ‘up and down’ stare. I stared back. This was not the time to mess with me.

I kept staring. She finally stopped staring. In a stilted voice, she eked out, “Can I help you?”

Not unless you can fix your own problem, honey – whatever it is.

Getting home never felt so good. The only other safe place is a medical setting. Maybe all other establishments need to start posting these signs in addition to no smoking signs: “Thank you for not staring.”

Next stop, the nearest sign company. I think I’ll buy a few thousand shares of stock.

This article originally appeared in NurseTogether.com.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.

Climbing the Mountain of Weakness

“When you are weak, you are strong.” What does this really mean? For those of us who have invisible disabilities, this is a haunting statement, yet it is one of the most liberating and powerful principles available to us.  We want so desperately to look someone in the eye and say, “I’m doing great.  How are you?” The reality is that when we are hurting, we are not doing great and we find it difficult, if not impossible, to look at someone in the eye and say, “I’m not doing well at all.  Can you help me?”  When we find someone who will listen to us and understand how we are struggling, it is a huge boost of strength.

What do I mean by weak?  Simply this:  The fear of admitting that you are having a very hard time or struggling to the point of not seeing a way out.  For example, in the last 2 months I’ve come to the conclusion that I do not feel safe to drive my car due to how I’m doing physically.  Telling someone that I can’t take myself where I want to go is very difficult, as it means I have to depend on others.  On the one hand, this is a weakness, because I’m afraid to admit to someone else that I need help.  On the other hand, it is a source of strength because when I ask for someone else’s help, I’m letting them into my world; when I see that they accept me after knowing this about me, it is a great relief and source of strength.  It takes a lot of courage for me to let someone else know my weaknesses.  Regardless of their reaction, the courage that I put forth to do this, strengthens me.

Unfortunately, in our culture today, admitting that we are weak, unable, not smart, feeble, or anything other than strong and powerful is frowned upon.  Going one step further, it is my belief that we not only frown upon this, but we push people aside who are anything other than positive, strong, full of answers and fully capable of overcoming difficulties.  This is true not only for us who live with disabilities, but this attitude exists in our schools, neighborhoods, companies and families.

What does all this mean for you? Admitting that you are weak is OK.  Choose an area of your life that you’re having a hard time with.  Make a decision to tell someone you trust about this.  You will surprise yourself with how this is very liberating and how it will strengthen you.

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.

Facing the Mountain of Insecurity

I have been involved with the Invisible Disabilities Association for a few months and have found it to be very helpful in many ways.  I’ve met several people who share some of the same struggles I do.  I have also really enjoyed telling my story through the blog and hope it has inspired others.

A while back I was asked to consider telling my story on video.  My first reaction was “Oh my gosh, I can’t do this.” The reason I struggled with doing a video was because I had been having a difficult few months physically to the point where I was not able to get my hair done for six months. What I realized is that my real struggle is that I don’t want anyone to see my real sickness. I thought that having my hair done would somehow cover up my invisible disabilities and would make me feel more secure.

I realized that it is very important for me to look as “normal” or “healthy” as I can before others see me (outside of my doctors, who see me at my worst – LOL!).  I find myself fighting in many ways to look and feel healthy, but I know that I’m not. Therefore, anything I can do to change my outside appearance becomes more important. While this may sound vain, to people like me who can’t hide their disability when they are not feeling well, a good appearance has much more meaning than I’d like to admit. It is a form of security that helps me feel better about myself.

To conclude, what I’ve learned (the hard way) is that living with an invisible disability means that some days I’m going to look and feel like crap.  Period.  However, that is OK.  Some days my struggle is going to be so hard that I could not hide it or make it look better no matter how hard I try.  I found that I’m better off putting that energy into something that I can do to try and best manage the pain for that day and not worry about how I look because I know that it won’t make any difference.

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.

A Great Loss for IDA Founder and His Wife

IDA Founder and his wife are suffering a great loss. Wayne Connell’s wife, Sherri lost her brother Jim just before Christmas of 2011. He had struggled with severe pain for many years and took a bad turn after major neck surgery last summer. Although he was clearly suffering, this was very unexpected, as Jim passed away in his sleep.

Jim was a “Harley Man.” He loved motorcycles, fast cars, go carts and dune buggies. He also had a gorgeous voice and loved to sing karaoke. But most of all, Jim was a family man. He loved his momma more than anyone or anything in life and he was extremely close to his sisters.

One of his favorite sayings was, “Always remember, Family First!” His Mom always told him, “You have the best characteristics any man could ever have and I call that “Tough and Tender.”  She was so proud of her boy and of the man he had become, he was her Rock.

Jim wasn’t just a “Big Guy” in stature (protecting his sisters), he was the one with the “Biggest & Best Hugs” and a really “Big Heart.” He was a very giving man who loved to help others. There were well over 200 at his memorial service and even more at his life celebration dinner. Person after person told stories of how Jim always put others first and was always there for them when they needed help.

Jim was very supportive of the work that the Invisible Disabilities Association does to help others like his baby sister, Sherri. He traveled to attend the banquets with pride for what IDA was doing to bring awareness and support around the world. In addition, for nearly 20 years, he was a part of the local Toy Run, taking toys to children in the hospital in a parade of motorcycles and hot-rods.

He will live in many hearts forever!

VIDEOS

Incredible and Unique Processional After Jim’s Memorial Service

In Memory of Jim Mitchell Video

ADDITIONAL STORIES

IDA’s In Memory Page: Jim Mitchell

Reach Out to People Living with Illness and Pain in 2012

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!

Climbing the Mountain of Pain Management

Living with pain is very difficult, as there are many times when there is no way possible for me to get rid of it or be comfortable enough just to relax.  Having physical pain can be a constant obstacle for many people, including myself.  Instead of remaining angry or frustrated, I try to create soothing options to mitigate the pain, like soaking in a hot bathtub or by taking deep breaths.  One thing I have to learn to live with is managing the pain.

Another thing that helps me to manage the pain, is to create distractions.  While the pain in my body is real and not just imaginary, I’ve found that activities that take my attention help me to focus on other things , such as reading or watching a good movie, especially if it makes me laugh.

Sometimes the pain is so bad, I feel like giving up.  Even admitting it is a struggle.

There are many definitions of what chronic pain is, as everyone’s body and tolerance levels are different.  What I’ve found to be important is to seek out help as soon as the pain sets in, as it becomes harder to talk about as the pain gets worse.  As in my own case, I began noticing that my Fentanyl patch began losing its impact and the pain began to increase.  I tolerated this for months and did not speak up about it.  Now it has caught up with me and has become more of a crisis, as the pain level seems to have hit a tipping point.

If you’re living in pain, I would suggest that you try other possible solutions to mitigate the discomfort before turning to medication.  A few examples are, acupuncture, physical therapy, or light exercise in a swimming pool.  These are examples of things I tried  before turning to narcotics, which for me was a Fentanyl patch.  The reason I suggest trying non-medication solutions first is because you avoid long term risk to your body brought on by possible side effects and long term effects from the medication.

If you are new to chronic pain, I understand the frustration, anger and other emotions that say, “this is too much.”  I know from experience that it seems like some days feel like they’ll never end, as well as the pain.  In this case, medication can be a short term solution while you explore other alternatives for a longer term solution. The key is to take one day at a time and not worry about tomorrow, next week or anytime in the future.

Disclaimer: Please check with your doctor before stopping or starting any medication, treatment, therapy or exercise.

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.

Falling Off the Mountain of Trauma

Have you ever been in a car accident or known someone who has?  Have you ever experienced another type of accident that either injured you or left you fearful?  Have you ever had, or know someone whose had a serious health condition or one that scared you?  Most of us can identify with one of these situations.  By definition, you’ve lived through trauma, which is defined as a wound or shock produced by sudden physical injury or an experience that produces psychological injury or pain.

When you hear the word “trauma”, what comes to your mind?  Most people would picture a car accident, a heart attack or someone serving in the military who has been seriously injured or has seen others get shot or killed.  While this is true, trauma extends far beyond the common pictures or stereotypes in most of our minds.  For example, this month we as a nation remembered ten years back to the attacks of 09-11.  For many people who may not realize it, 09-11 was a traumatic experience, regardless of where you were when it happened. Reality is this: Trauma is much more common in most people’s lives than we realize. Our human nature does not want to admit this, as it is very painful and embarrassing.  Unfortunately, running away from trauma or sweeping it under the rug only makes it worse.  Trauma is a one type of an invisible disability and a mountain that many people “fall off of” metaphorically.

Many of you may know my story that in 1985, I had a serious rock climbing accident, falling 125 feet and breaking my bones in 168 places.  At the time of my accident, I realized that I had suffered serious physical trauma.  However, just as damaging, if not more damaging, was the psychological trauma. It was not until 17 years later that I got professional counseling to help me through my accident.  What I learned from my counseling is that I had not only suffered physical trauma, but also serious psychological trauma.  My counseling was very helpful because it got me to open up, admit some difficult struggles I was having, and it helped me to learn to live with myself regardless of what I had been through.

In summary, many people are living with ongoing trauma and don’t realize it.  I understand that the subject of trauma is serious and not one that many people enjoy reading about or discussing.  However, my intent in writing this blog is that people will be honest about their lives as well as those they care about.  Trauma, as bad as it is, can be managed and people who go through traumatic difficulties, can find peace and freedom to live their lives.

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.

Photographer Uses Her Camera to Tell Matt’s Story

Freelance Photographer, Ilona Berzups, had been spending time at Tent City 3, one of three Seattle area homeless encampments. Ilona said, “I’m a photographer and my storytelling tool is my camera. I have a deep interest in humanizing those who are beaten down and marginalized in society, a deep interest in re-sensitizing people to their less fortunate neighbors by making it personal.”

Matt had been homeless for much of his adult life and living in a tent at this camp for the past three. Although Ilona had been visually documenting the camp and getting to know the residents for about a year, she had never talked to Matt. She noticed the scaring on Matt’s body and face, in which she and many others often assume was the result of being burned. Ilona admitted, “I wanted to meet this man but for weeks I struggled with my apprehension at facing Matt’s disfigurement, experiencing incredible guilt for being so weak towards another human being. I choke up thinking about it.”

Finally, she was introduced by another resident and friend of Matt’s, Miss Merrita. “When I met Matt what surprised me the most was how all my preconceived notions and fears immediately melted away. He was just a pleasure to talk to – interesting, articulate, sincere – and then I saw Matt ‘the man,’ not the homeless man or the disfigured man – just this amazingly resilient human being” Ilona described.

It turns out that Matt had never been in a fire at all. In fact, he has actually lived with 11 types of cancers since he was just two years old. One of the cancers is called, basal cell nevus syndrome, a genetic form of cancer passed down through his family for six generations. Matt lives in constant pain and has had over 1,700 surgeries, all of which have left many scars. 

In addition to a very long battle with illness and homelessness, Matt has also endured a discrimination that most cannot fathom. Not only do people stare, but they also scatter on the bus and he has even been called a monster. After this kind of treatment, a person may assume Matt would be an angry man; yet, those who know him, call him very special, loyal and loving friend. 

In one of their meetings, Matt told Ilona, “I want to change the way people see the less fortunate, homeless, disabled, however they want to call or name them, we are all human beings and all have rights to certain things in this life.”

Ilona quickly decided she wanted to create a photo essay to capture the many facets of Matt’s life. Ilona explained, “Matt’s journey has been incredibly hard and still inspirational. I’ve been able to capture a part of his journey visually and my hope is that it be received with the sensitivity and care it deserves.” Ilona added, “My desire is that his visual story will make others examine how they see and (consciously or unconsciously) treat those who are different.”

The essay was just released on November 14th and is titled, Walking with Giant – One man’s battle with homelessness and debilitating illness.

Matt was a Special Guest at the Invisible Disabilities Association’s 2011 Honor Awards Banquet. He shared a bit of his journey, which brought the audience to their feet! Matt’s story is inspirational and will change your life and your mind about judging others, before taking the time to get to know them. Read full story and watch his video.

Photo for this article copyright Ilona Berzups, used by permission.

ARTICLE RESOURCES 

A Lifelong Journey with IDA Special Guest, Matt Barrett (Article and Video)

ILONA BERZUPS Photography

Ilona’s Photo Essay (now available in print), Walking with Giant – One man’s battle with homelessness and debilitating illness.

ADDITIONAL RESOURCES

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

Matt Barrett’s Website, A View from the Street 

 

 

Matt at the 2011 Invisible Disabilities Association Awards Banquet

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!

I Can’t Do This Anymore

“I can’t do this anymore.”

“What?? You have to keep going. You can’t quit. You’re needed. You’re fantastic at what you do.”

“No, it’s too hard. I’m exhausted. There’s too much to do and never enough time. I’m fighting on every front and I have no more fight left. I’m tired of being responsible, tired of doing it all and doing it well. Really, there’s barely time even to do a lousy job at the required basics.”

My friend was struggling in her job and at home. I didn’t like what I was hearing, but I understood. I’d previously slid down a similar slimy slope.

There were no grab bars, no traction, no hay bales to cushion the landing along that slope. It was all downhill, like a runaway sled careening down an icy hilltop.

Has your sled slipped down that same slippery slope of overwhelmingness?

I’ve been there more times than I’d like to admit to anyone, most especially myself. I’d wanted to quit workplaces in the past, I’ve wanted to quit my own business, I’ve wanted to quit as a patient, I’ve wanted to quit watching loved ones as patients.

I’ve wanted to quit. But it’s been seldom when I’ve followed through on that desire.

There’s much I have to learn, but this I know: the ‘how’ of how we keep going when we can’t keep going, might be found in a simpler answer than we realize.

The ‘how’ lies in hope. Consciously or unconsciously, we hang on to hope. We hope for a better day, situation, outcome. We know it can be better than it is. We wait for the day when it is just that. We do what we can to bring it on, and if there’s nothing we can do, we patiently plow through the days until the sun glints through the clouds.

Along the way, we hold on to the hope of the heartfelt relationships of our lives, the intrinsic value and purpose our relationships and work bring us, and the unexpected humor that catches us off-guard.

There is funny in almost everything, including overworked, underappreciated, ‘get me the bleep out of here’ workdays and at-home days. During some past jobs, I had been known to keep going merely by telling myself that the workplace, in all its messed up unglory, was there simply to entertain me. And not only that, but I was paid to be an interactive audience! I silently voiced a ‘bravo’ for true-to-form stellar performances from colleagues, administration and customers.

I could choose to be either annoyed or amused by their antics and interactions with me. When I chose to become detached and amused, the day was not as bleak as it had been. There was reason to chuckle and smile. From there, I could pass on the good humor, so to speak, to others and be re-energized by it myself. It might be an unorthodox coping mechanism, but sometimes unorthodox is what survival requires.

You can so do this, too. Bravo, you!

#####

Reprinted with permission from the Journal of Nursing Jocularity.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.

Falling Off The Mountain

February 13, 1985 was a day that changed my life forever.  I was a freshman attending Ft Lewis College in Durango, Colorado.  On that day, I spent the day rock climbing with 2 friends, a sport I had taken up 9 months prior.  Later in the afternoon, I had reached the summit; it was an exhilarating moment, as looked out across the valley.  I felt at peace and was thankful for the experience I had.  I was now ready to come down.

I leaned back as I began to repel down.  As I looked over my shoulder to get my bearings, I heard a loud click and a swooshing sound, and I knew I was in a free fall.  Suddenly I saw the sky, trees, ground, and the mountain racing past me at what seemed like 100 miles an hour. Seconds later, I hit the ground feet first and heard a loud crunch.  I blacked out for a second and saw my body twisted like a Raggedy Ann doll turned in all the wrong places.  The pain was excruciating.  I had just survived a 125-foot free fall.

During the course of the next 26 years, I went through 40+ surgeries and have too many scars to count, many of which are emotional.  I have many physical and emotional complications as a result of my accident, including hepatitis, kidney failure, severe pain continuously, battle PTSD, and other challenges.  I take multiple prescription medications on a daily basis.  My life is a challenge beyond description.

The irony is that if you met me today, you would not have a clue that anything was wrong with me.  I did not lose any limbs and am not in a wheel chair.  I look like every other average size female you see every day.  The truth is that I’m permanently disabled, even though I don’t look like it.  The fact that my disability is invisible only adds to the challenge. However, I’m not alone, not even close.  Everyday we all pass by people who look, sound, and smell “normal.”  They’re far from it, because they’ve “fallen off their own mountains” and are living with one or more invisible disabilities.

Believe it or not, there is a silver lining in my cloud.  I have learned many valuable lessons as a result of my accident and the challenges I face every day.  As I continue to write about the specifics of what I’ve learned, I believe that I can help others to learn how to live with their invisible disabilities.

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 Rolling Stone

“Maybe I’m an exception to the ‘rolling stone gathers no moss’ adage.”

I’m feeling pretty darn moss-covered myself some days, especially when work and life seem to be rolling downhill. It’s overwhelming at times. It happens far more often than I’d like. Needless to say, I’m a mite suspicious of the proverb about a rolling stone gathering no moss.

Prove it.

The faster the downward tumble speeds up at a breakaway pace, the more moss  – the more yuck, the more issues – I seem to accumulate. I can’t shake it. Its fuzziness is annoying. Get this stuff off me!

Perhaps that wasn’t the original intent of the phrase. Still, I beg to differ with it – as sometimes seems to be my nature.

Do you ever feel that way, about the rolling downhill part? That life is rolling along at its own merry clip, and all you can do is attempt to merely match the same pace, while all the while gunk is building up on you, instead of falling away, off to the side, where it belongs?

I’ve felt that way in the past as a patient, I sometimes feel that way as a professional, and I certainly feel that way in my personal life.

My neighbor Jeanette and I meandered onto the topic of overwhelmingness this weekend. She’s the busy mom of two young boys whom she home-schools and the mom of one husband – who, of course, she doesn’t.

Although we live lives that are more dissimilar than similar, we both feel it. The ‘it’ being the weight of all we carry, all we’re responsible for, all that the world throws at us. It’s never-ending and no matter how much we do, more keeps getting added to the list.

In the midst of our commiseration, Jeanette stopped me when she offered a game-changer, a brain-changer. She said, “We can’t stop from rolling downhill. We can only learn to roll downhill better.”

Ooooh.

Huh.

She’s right. We can’t stop more and more stuff – activities, obligations, requirements, messes, muck and miscellaneous – from entering our lives. But we can determine that we’ll handle them all better. We’ll learn to juggle. Not by juggling nine pointy knives at one time, but by juggling two or three soft foam-like balls.

No rush to learn or perfect the craft. We’ve been dealing with green muck attaching itself to us all our lives. It’ll take a little while to intentionally step back, take a breath, and figure out how to deal with the muck that needs to be dealt with, and how to apply muck-repellant for that which doesn’t.

Identifying the muck and green moss that we don’t need to put up with in our lives is half the battle. Once we learn to identify it and handily repel it so it doesn’t stick to us, our downhill roll will be much less encumbered. Less overwhelming. Much more freeing.

We might even be able to relax and enjoy the ride – sans our green mossy selves.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.

The Non-Compliant Patient

“You’re such a non-compliant patient.”

Words I heard again at yet another medical appointment. I really should be fired sometimes.

The words were said with affection, from a nurse who has become a friend.

Nonetheless, though, she’s right. I am non-compliant. I comply when it suits me, and so often it doesn’t.

I recently saw my neurosurgeon for an annual re-check of a surgery he performed eight years ago. The symptoms that originally brought me to their office were similar to symptoms I once again found myself experiencing.

Numbness and weakness in my right hand were becoming all too constant.

Back then, the numbness was caused by a bone spur stealthily growing into my spinal cord. So the nasty little bugger was cut away and the numbness largely disappeared. Until this year.

I weighed my options: do I bring this symptom to my medical team’s attention and potentially deal with another surgery? I’m really not in the mood for an operation at this time. My calendar is full of plans; surgery is not one of them.

Or do I act the responsible patient and mention this numbness, knowing I might not like the answer I hear?

It seems to be a no-brainer, but it’s not so clear cut when your brain is the one involved.

After some deliberation with myself, the ‘responsible patient’ won the battle.

I hesitantly brought up my symptoms to one of my favorite doc / nurse teams.

We did an in-office exam, we did EMG / NCS testing, we did a follow up appointment.

My nerves were shot, but not from physical causes.

My nurse, Vicki, made the appointments as quickly as she could. And because of her seniority, connections and reputation, when she made requests, things got done. I was humbled and grateful.

Finally, at the followup, my neurosurgeron shared the great news. My nerves were fine!

The likely culprit is four decades of arthritis, causing musculoskeletal issues. Whew! Is that all? I can live with that, especially since my recently increased chiropractor appointments seemed to be lessening the symptoms.

I understand that hand surgery would probably make life easier, as my neurosurgeon suggested. But these old gnarled hands get me through normal daily activities just fine, thank you very much. If and when they no longer do, I’ll consider surgery.

At present, I have no desire to add to my eight-count and growing collection of surgeries. Some operations are non-negotiable: for example, spinal cord bone spurs and orthopedic surgeries needed for walking. Ones that are designed merely to make life easier? Pfft, they’ll have to take a number and wait.

Vicki asked if I planned to contact either of the referrals given to me. No, I’ve got my own calendar to get back to right now.

“You are so non-compliant, Kris. But it’s good. You know how all this works, and you think for yourself.”

Maybe so, maybe to my own detriment sometimes. But hey, as long as there’s options to weigh, I will.

####

Reprinted with kindly permission from the Journal of Nursing Jocularity.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.