Personal Journey — Invisible Disabilities Association

My Mother’s Day Climb

May 14, 2012 By Angela Pierce Leave a Comment

Happy Mother’s Day to all the moms out there. It is a very special day for everyone who has children and families. For those of us who do not have children, especially those who do not have children due to the fact that they have a disability, it can be a bittersweet day. I am grateful for my mom and happy for my friends and sisters who are moms. However, there is still a part of me that feels a void since I am not a mom and will not ever have my own child. It is not only on Mother’s Day that this difficulty exists, but on any day when someone who sees my wedding ring and asks me, “do you have children?” and I look at them and say “no.”

The decision I made to not have children is just one example of how the damage from my rock climbing accident in 1985 continues to be a daily challenge. To this day, if you met me for the first time, you’d never know that I had a series of lifetime disabilities. Other than several scars on my body, my disabilities are invisible. These challenges are compounded by many difficult decisions I have had to make due to my limitations. One of those decisions was the decision to not have children. I have wrestled with this decision since I was in college, just after my accident and still struggle with it 27 years later.

I know that there are many women who can not or choose to not have children, due to health problems and disabilities they live with. The challenge is to find something else that fulfills the desire to take care of other people that all women have. For the past 27 years, 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. I’ve also worked with young adults who had special needs. I also have regular communication with my godchild and her mom.

Even though I do not have my own children and never will, 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. Besides, there are plenty of kids out there who need an adult to be more involved in their lives. For those out there with severe disabilities, invisible or not, nurturing a friend or family member can be just as rewarding. Just 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.

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: children, disability, illness, injury, invisible disabilities, mothers, parents, personal story

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The Only Disability is YOUR Bad Attitude!

April 16, 2012 By Kris Harty 1 Comment

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.

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: author, awareness, disability, discrimination, personal story, rheumatoid arthritis, speaker, visible disabillities

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Climbing the Mountain of Weakness

March 20, 2012 By Angela Pierce Leave a Comment

“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

Filed Under: Coping with Invisible Disabilities, Personal Journey, Relationships Tagged With: disability, illness, injury, invisible disabilities, pain, personal story

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Facing the Mountain of Insecurity

February 4, 2012 By Angela Pierce 2 Comments

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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: disability, illness, injury, invisible disabilities, looking good, pain, personal story

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A Great Loss for IDA Founder and His Wife

January 1, 2012 By admin 5 Comments

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!

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!

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: family, IDA Founder and President, illness, injury, invisible disabilities, loved ones, memorial, news, outreach, pain, personal story

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Climbing the Mountain of Pain Management

December 21, 2011 By Angela Pierce 4 Comments

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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: disability, illness, injury, invisible disabilities, medications, pain, personal story

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Falling Off the Mountain of Trauma

November 16, 2011 By Angela Pierce Leave a Comment

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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: accident, disability, injury, invisible disabilities, personal story, post traumatic stress disorder, trauma

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Photographer Uses Her Camera to Tell Matt’s Story

November 14, 2011 By admin 1 Comment

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, 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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: awareness, basal cell nevus syndrome, cancer, disability, homeless, illness, invisible disabilities, Matt Barrett, pain, personal story, photo essay, photography

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I Can’t Do This Anymore

November 10, 2011 By Kris Harty 2 Comments

“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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: author, discouraged, finding humor, illness, perseverance, personal story, rheumatoid arthritis

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Falling Off The Mountain

October 24, 2011 By Angela Pierce 2 Comments

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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: angela pierce, disability, injury, invisible disabilities, kidney, pain, personal story, ptsd, surgery

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The Rolling Stone

October 23, 2011 By Kris Harty Leave a Comment

“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

Filed Under: Coping with Invisible Disabilities, Finding Humor, Personal Journey

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The Non-Compliant Patient

October 4, 2011 By Kris Harty Leave a Comment

“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

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: author, caregiver, disability, doctors and nurses, illness, injury, invisible disabilities, medical appointments, personal story, speaker

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Facing the Mountain of Loss: Losing My Health

September 5, 2011 By Angela Pierce Leave a Comment

One of the most difficult mountains I’ve faced in my life are those that deal with my health. The reason is because many of these challenges have been things that I have had little to no control over.

I can try to mitigate some of the symptoms with medication, healthy eating and good lifestyle choices; however, as disciplined as I am and as hard as I try, sometimes this is not enough. For example, I discovered in 2009 that I had kidney failure. After a biopsy, I was put onto dialysis, as my kidney’s were barely functioning. The doctors could not figure out how my kidneys failed. Simultaneously, I have had hepatitis C since 1985. I got this disease from a blood transfusion that I received after surviving a rock climbing accident.

The only way to eradicate hepatitis C is to take a drug called Interferon. Unfortunately, I can not take this drug due to my kidney issues. Living with both kidney disease and liver disease is a mountain that seems impossible to overcome. Especially, since the best option for both of these illnesses is to receive an organ transplant. There are so many factors that I have no control over so the destiny of my health is largely out of my hands. That is one of the scariest things I live with every day.

The silver lining in my situation is this: Even though I have kidney disease and have been through dialysis for 2 years, I have been fortunate that my kidneys began to function well enough to take me off dialysis. This is a miracle, as my kidney doctor told me that I was only the second patient in his entire career that he has taken off dialysis.

Some of the things I’ve learned through my illnesses may sound familiar but they are still worth noting.

1. Do your best each day to take care of yourself. Get enough rest, have the right diet and exercise as much as you can.

2. Talk through your fears and concerns with someone or some people you trust. Getting your feelings out in the open is a great source of healing.

3. Be OK with the fact that some days will be harder than others. It may be very difficult, to the point where you may not be able to get out of bed or speak with someone. Recognize that days that are very overwhelming are a part of healing and they will not last forever.

4. Remember that you are not alone. I realize that some days it feels like I am the only person struggling beyond belief; the truth is that there are many people living with disease and/or multiple diseases just like me.

5. No matter how challenging your situation is, do not give up. I know that is difficult to hear when you lose your health to an illness or have another kind of loss, but it is important to remember this: DO NOT GIVE UP!

About Angela Pierce

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: angela pierce, challenges, encouragement, helpful tips, illness, injury, invisible disabilities, life's journey, loss, loved ones, personal story

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Facing the Mountain of Loss: Losing a Friend

August 9, 2011 By Angela Pierce Leave a Comment

In the last two years I have lost four people I cared for very much. They both were about my age, 45. Losing these friends forced me to face a mountain of loss that I was not familiar with. Standing at the bottom of this mountain, I had no idea what to do next. There are others out there like me who know what its like to lose a great friend and face this mountain. When we lose someone we love, many thoughts and emotions went through our mind. Getting myself to move forward would take some time. This kind of mountain made me wonder why I am here? I thought to myself, “these people were no different than me, yet while I am alive they are gone from this earth.” My first step was to face my grief, talk about how I felt and admit it made me feel afraid. After a while I asked myself the question what was my purpose in life?

This is a mountain I did not expect to face when losing friends. They were no longer there to talk to, laugh with, or even cry with, so it made me focus on how I wanted to live my life. I missed all four of these people and I treasured our memories together. Somehow their death gave me the a opportunity to face my fears. To move further up the mountain, I had to realize getting passed this pain may not happen today or tomorrow or even a year from now, but I believed if I kept trying, I would discover how to get to the top.

As time progressed, my perspective began to change. My sense of self-confidence started to grow. When I found myself getting closer to the top of this mountain, I remembered great memories and how they touched my life. Because they died at my age, I realized you never know when your life will end, so if you can, give it your best. Different emotions have come as time has gone on. I know that there will be times when I’ll experience their loss again, and I will face another difficult mountain. For now I am at peace.

About Angela Pierce

Filed Under: Coping with Invisible Disabilities, Personal Journey, Relationships Tagged With: angela pierce, challenges, encouragement, facing the mountain of loss, injury, invisible disabilities, life's journey, loss, loved ones, personal story

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Perseverance is a Long Word

August 5, 2011 By Kris Harty Leave a Comment

“Perseverance is a long word followed by a short attention span.”

While I wrote that quote for a recent weekly business column, it applies universally, especially so for patients.

If you’ve been in nursing for awhile, maybe you’ve observed what I’ve experienced firsthand – a decrease in the time patients, myself included, are willing to be patients. Attention spans for self-care shorten as our recoveries drag on from illness or surgery. Our society doesn’t do patienthood well anymore.

We want popcorn-ready recovery. Click a button, and presto – we’re done.

We live in an Instant Everything world. “Three seconds for a Web site to load??? Sheesh!” How that mentality affects recovery is a subject I touch on in my freshly published book, too.

As I note in the introduction (the ‘Check In’) to my book:

“We live in an Instant Gratification, Instant Everything world. Consequently, as patients, we might not have the skills needed to persevere while healing and recovery take their own sweet time. Perseverance is a dying art. The good news is we can regain those skills, especially when you lead the way.”

An excerpt from another chapter (complete with comment and question at end) recalls a time when I struggled with the patience to persevere. I underwent two record-book total hip revisions, six months apart. The non-weight-bearing walker I used for six months following each surgery allowed my bone grafts to heal.

“With the gracious help of lots of friends, family, and coworkers, I made it through the tumultuous post-surgical year of limited mobility. It was a trying time, even for someone ordinarily blessed with loads of patience.

The support and positive comments I received from [my surgeon] and his team at my periodic follow-up appointments encouraged me to keep going. Other patients made it through similar extended recovery times. I would, too.

I never thought I’d long to have my Walking Stick back. We don’t always know how good we have it until we don’t.

I knew I was feeling better a few months post-op when my patience with the walker was kaput. I could move so much quicker without it! It got in my way and slowed me down, and I had things to do.

While having been given strict orders to use my walker 100% of the time, and knowing the risks if I didn’t heal completely, I decided to compromise.

Using the walker in the traditional manner was too slow 100% of the time. So when I felt the need for speed, I began dragging the walker behind me. It was still with me. I was still using it.

We can justify anything, can’t we? In retrospect, it was a ridiculous move. But being the person living it at the time, it seemed a safe bet. I healed fully, in spite of myself. There are times this patient really should be fired.

UpShot: Patients like me must be wearing for professionals like you. All the work you do to make sure I have the best chance to fully heal, and I risk it because I’m impatient. I’ve heard of doctors firing patients for not conforming to orders. I’m grateful my [health care givers] stick with me through my own occasional self-sabotaging efforts.

The Stickability of Stick Together: Who sticks by you when your actions suggest that their efforts might be better spent elsewhere?”

You provide the necessary reminders for your patients to persevere through a full and proper recovery. Your patients will short-change themselves; we look to you for the encouragement our perseverance-depleted selves crave.

####

Reprinted with kindly permission from the Journal of Nursing Jocularity.

About Kris Harty

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Facing the Mountain of Loss: Losing a Pet

July 21, 2011 By Angela Pierce Leave a Comment

It takes time to appreciate the value of climbing a mountain. You do not know if you will be able to make it to the top, get stuck half way, or be so frightened you stand at the bottom, afraid to take the first step. Choices in real life are the same. Some things we can do very easily; others we begin, but midstream we freeze and have no idea what our next move should be.

The hardest thing is when I have faced mountains that seem insurmountable. I have been trapped at the bottom several times, afraid of what to do next. Pushing myself forward has taken minutes, days, weeks, months, even years. Each time I have worked through the difficulty, I see something amazing that I did not know or understand about myself and life. Recently, I faced a big mountain. My husband and I lost our 18 year old cat Sebastian. We do not have children so when he died our hearts were left empty.

He was part of our family. The next few weeks we started looking for a new cat, but we were not into it. It felt foreign to not have a cat but it was hard to think how we would replace Sebastian. Two days ago we found two kittens.

They are so fun and playful. The mountain of losing something or someone you love makes it hard to want to give to anything or anyone else. The beauty is that when you do, you appreciate life in a brand new way.

About Angela Pierce

Filed Under: Coping with Invisible Disabilities, Personal Journey, Relationships Tagged With: angela pierce, challenges, encouragement, facing the mountain of loss, life's journey, loss, personal story, pet

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Mum Discusses Summer Break in Routine for Son with Autism

July 1, 2011 By admin Leave a Comment

Morven Da Fomo of Ullapool, discusses summer challenges for parents of children with Autism and Asperger’s. Morven says they want the children to have fun, but there are always concerns with the break in routine. Many parents of children with other developmental differences may also relate to the challenges.

Morven said, “Parents of a child with autism want them to have a fantastic summer, but when days don’t go so well you can feel drained, disappointed, isolated and even a bit of a failure.” She added, “Autism is known as ‘the invisible disability’, so to an outside observer it can look like your child is just being naughty when they are actually really struggling to understand what’s going on around them and cope with the anxiety of it all, like a mini nervous breakdown.”

Read Full Article

RESOURCE:

Ross mum’s advice on summer trips with autistic children. June 17, 2011. Boss-shire Journal.

ADDITIONAL RESOURCES:

A Stranger Among Us by Lisa Lieberman, MSW, LCSW.

A Wiser Mind

About Autism.

Autism awareness Month a special time for Wayne family.

Autism Facts and Statistics.

Autism Society Applauds the Introduction of the “Safe Chemicals Act of 2011.”

The Autism Society Calls for Awareness and Action this April to Support 1 in 110 People with Autism in the United States.

Autism Society

Autism Speaks

Kevin Custer, 2011 IDA Corporate Award.

National Autism Awarness Month – April

Support families living with autism.

UC Davis MIND Institute

MORE STORIES FROM IDA:

Invisible Challenges with Autism (and other developmental differences).

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

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Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: asperger's, autism, awareness, helpful tips, invisible disabilities, personal story

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Airline Apologizes for Refusing Ticket to Girl with Down’s Syndrome

June 28, 2011 By admin Leave a Comment

Heather Saunders, mother of 12 year old Alice, was told her daughter could not fly on her own due to having Down’s Syndrome.

Heather said: ‘When I asked why she said: ‘‘Because we’ve had problems in the past.’’ ‘They ask you to let them know of any additional needs. I asked: ‘‘What if I hadn’t told you?’’ ‘She said: ‘‘We would have turned her down when she arrived because she’s got Down’s syndrome.’’’

Read Full Story

ARTICLE RESOURCE:

Down’s syndrome girl Alice Saunders refused ticket by British Airways. June 15, 2011. Metro Online.

About

Filed Under: Coping with Invisible Disabilities, Personal Journey Tagged With: ada, awareness, barriers, disability, disability access, down's syndrome, personal story, travel

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A ‘What’ Scan?

June 23, 2011 By Kris Harty Leave a Comment

“A what scan?”

A scanner connoisseur, I added a new scan to my appointment this week.

The oral surgeon’s office has a newfangled scanner called a CBCT: Cone Beam Computed Tomography. I’ve had MRIs, CTs, tomography (um, regular??) and now CBCT.

It rocks.

The CBCT scanner is quick, easy and tunnel-free. It provides standing room only. The best part, it only outputs about 1/100^th of the radiation of a traditional CT scan.

“Put your chin up against this small cupped rail, stand still, and the two scanner parts will circle around your head. It’ll take about two minutes.”

The images pulled up immediately afterward. How weird to see what looked like a hologram of my lil’ ol’ skeletal head. Freaky, but cool.

My dentist recommended I see the oral surgeon and have him take x-rays of my jaw joint. A couple months ago, my left jaw bone seemed to crack, crumble and then – OUCH – get stuck, on and off, for a week or two.

Taking no chances, my dentist wanted to make sure all was mechanically ok and I wouldn’t be unexpectedly experiencing a frozen jaw anytime soon.

And for once, I heard really great news at a surgeon’s office. In fact, he went so far as to say that my jaw bones, both sides, looked really, really good. Well, ok, really, really good for someone who has had Juvenile Rheumatoid Arthritis for four decades.

I’ll take it.

“Wow, now that’s something I seldom hear: ‘Kris, you have really good bones.’ Woo hoo!” The surgeon chuckled.

“I’m happy to say there’s no need for surgery and you should be just fine. And keep up the singing lessons. They probably are helping.”

Whaddaya know. Another payoff for my newfound fun.

I started taking singing lessons a year ago. I’ve never sung in my life, not even in a choir. But it’s been tugging at me the last few years, so I decided to give in and see if there is anything there that wouldn’t scare human or animal.

Apparently, there is – I mean, there is some ability there. Anyway, my instructor keeps after me to relax my jaw.

Four decades of arthritis taught my body to remain tense to protect it from pain. While constant pain is long gone, my body didn’t get that part of the message. So tense it remains.

Forcing my jaw muscles to relax is challenging. It’s what caused the cracking and crumbling recently. Then it went into spasm (locking and unlocking my jaw) for a few weeks while it figured out what to do with its newfound state of relaxation.

My dentist noted that I could open my jaw wider than in the last decade he’s seen me. I notice it, too. And my singing instructor happily notices more movement for singing.

I’ve found singing is good for the soul. Who knew it was good for jaw muscles, too?

Oh yea, and for opening doors to new scanners, as well. Woo hoo.

####

Reprinted with kindly permission from the Journal of Nursing Jocularity.

About Kris Harty

Filed Under: Coping with Invisible Disabilities, Disability & Healthcare, Personal Journey Tagged With: author, disability, humor, illness, invisible disabilities, medical appointments, personal story, rheumatoid arthritis, speaker

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O’ Heart O’ Mine, Tell Me You’re Fine!

June 1, 2011 By Kris Harty Leave a Comment

“Tick tick tick.”

I take it for granted. My ticker, that is. It’s one part of me that, as far as I know, still works as it was designed.

Four decades of arthritis has not affected my heart. I’m fortunate.

At age seven, four decades ago, attempts were made to figure out what the heck was wrong with me. The first diagnosis was Rheumatic Fever.

Because Rheumatic Fever is a condition of the heart, I was told I could no longer run. How wrong they were! I could, and I did, whenever I was out of my mom’s eyesight – until I took off running a few steps too soon and she caught me, watching from the kitchen window. “KRISTINE!!!!!”

Her voice, screaming across the neighborhood, catapulted me as though into a backward slingshot. Good thing my Flintstone brakes still worked.

My running days were history. Not an easy adjustment for a kid who loved to run around, literally. My bare toes knew well the soothing coolness of the green grass after skipping along the hot concrete sidewalks, like butter in a hot pan.

I felt fine. My heart felt fine. The tests had to be wrong. My legs carried me, quickly, wherever I wanted to go. I would not deny myself the pleasure.

During the tongue lashing, I learned the seriousness of the situation. It’s a lot to take in at seven years old. Disciplining myself not to run – when I was still fully able – was like asking a racehorse not to do what it was built to do.

Medical folks and their tests – what did they know?? I was mad, sullen, sad. My joy was gone.

As an adult, I’ve learned that Rheumatic Fever is often a precursor diagnosis to Juvenile Rheumatoid Arthritis. It’s not known why, or if it it’s an accurate diagnosis, or if one condition morphs into the other.

My heart has always tested fine since those days. Yet I sometimes wonder about that frequent little skip in my heartbeat, and the thirty seconds or more when the beats get all messed up and I hope they go back to normal on their own.

Doctors over the decades declare my heart fine. They reassure me, saying that many people experience these blips in their heartbeats. But as a mere layperson, I don’t want to accept their explanation. I want them to hear it when it blips, and then tell me it’s fine.

O’ heart o’ mine, tell me you’re fine. Tell me you’re fine.

The tick tock of the clock reminds me how fast time skips along. It reminds me of the precious gift of a good ticker that ticks away all those seconds. It reminds me to again ask my medical team about my heart.

Is it time to talk to your team about your ticker?

Tick…tick…

*****

This article appeared originally in The Journal of Nursing Jocularity. Published on IDA with permission.

About Kris Harty

Filed Under: Coping with Invisible Disabilities, Finding Humor, Personal Journey Tagged With: author, doctors and nurses, health concerns, heart conditions, humor, illness, invisible disabilities, medical appointments, personal story, speaker

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