Someone asked me recently why I use a power wheelchair when I have the ability to walk. Why don’t I force myself to walk? Why have I given up?

The following was my answer:

Please do not judge me until you live a day in my life and understand the disabling medical condition I endure daily. I am able to walk a few steps with the assistance of a walker or cane, but due to a rare, invisible, chronic, hereditary, debilitating mineral metabolic disorder called periodic paralysis, my skeletal and breathing muscles are weak and progressively getting weaker, permanently. 

I have developed exercise intolerance. This means I am unable to do physical exercise or exertion on a level those others my age can. This condition also causes extreme pain and fatigue after exercising or exertion and other debilitating symptoms such as a feeling of heaviness in the muscle groups. 

Normally, food and oxygen are converted into energy and delivered to the muscles, but this cycle is disrupted in exercise intolerance. The muscles are unable to use the nutrients and oxygen, and therefore, not enough energy is generated to my muscles, and I am left with little or no energy. 

The fatigue causes me to be off-balance and at great risk for falling. When I walk more than a few steps, I get out of breath right away, my oxygen levels drop, my blood pressure rises and my heart goes into tachycardia. If I fall, I risk breaking bones from my severe osteoporosis or risk other injuries for which there is no treatment for me because I cannot use anesthesia, antibiotics or most medications. If I use them, I risk life-threatening side effects and arrhythmia called long QT syndrome, which can kill me. I also risk going into paralysis. For me, these paralytic episodes can be full-body, lasting hours or days and are accompanied by the same dangerous heart arrhythmia; I am unable to open my eyes, speak or move in any way, and I experience heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties and low oxygen levels. Cardiac arrest and/or respiratory arrest can also accompany the episodes.

Using a power wheelchair is important in other ways — if I am weak and in and out of paralytic episodes or experiencing extreme muscle weakness. I have an easier time of getting around and my husband has an easier time helping me and moving me from place to place. He can control the chair and does not have to lift me (he is also disabled). The chair has a reclining option because even sitting up straight proves to be too much exertion, and a headrest, which keeps my head and neck straight. When in paralysis, my neck muscles go totally flaccid, and my head will fall to the side causing great pain.

I am in pain 24/7 and can take no pain medications. My power chair has specialized cushions that help relieve the pain. I must use oxygen, and I am able to attach my oxygen to my power wheelchair, which is convenient. 

 My power chair also gives me some independence. I have a self-propelled wheelchair, but I need someone to push me around in it because I do not have enough muscle strength in my arms to propel myself. My power wheelchair gives me the ability to go out my back door independently and go for “walk” in my forest or my neighborhood. I can shop by myself as I recline in my chair. 

susan in power wheelchair

Scooters in markets and other places force me to sit up straight and exert more energy by keeping me extended on the controls, so they are problematic for me. My power wheelchair has a special hand control I am able to use with my arms resting.

Can I walk? Yes! Should I walk? No! Is a power wheelchair the best option for me? Yes. Do I look normal? Yes! Am I normal? No. Do I wish I could walk like everyone else? Yes. Do I wish I did not have to use a wheelchair? Absolutely. Am I giving up? No. I am trying to stay alive!

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the person putting up with my Lyme disease,

Thank you…

Thank you for being there with me, and not just for me — even if it’s on the other side of the door as I cry. Thank you for noticing when I’m not “all right” or “OK.” Thank you for not making me tell you what’s really wrong, but letting me tell you on my own time.

Thank you for checking in on me when I’m not OK, and then not taking my word for it when I say “I’m fine.” Thank you for your persistence when I’m being stubborn.

Thank you for helping me find something today to be happy about, even when I didn’t think it was possible when I rolled out of bed. Thank you for sticking by my side, even when I don’t want to do anything but cancel our plans and watch a movie, or talk about the deep questions of life. Thank you for always having answers to my deep questions.

Thank you for listening. You don’t try and fix my problems — we both know you can’t — which I think is part of the reason I have such a hard time opening up to people about how I’m feeling. But you strive to understand. And for me, someone who is at least trying to understand, even though I know it is impossible, is one of the greatest gifts I can be given.

Thank you for being you. I can’t always be myself, even though I always want to be. And even though I can’t always be that way, you are still yourself around me. You don’t pity me. I don’t want that. You don’t overstep bounds in trying to help. You are you, and that is all the help I need. So thank you for being something “normal” in my life, because “normal” is something I am in short supply of.

Most of all, thank you for noticing when I’m trying. I know you do, because you are more helpful during those times. Thank you for being there for me when I most need it. This battle would be so much harder without you.

I have learned that every day is a constant battle with my chronic illness. And since that is the case, it’s OK to lose some battles, and to even lose some days. And with you checking in, it helps me know that I am OK, and even though today might have been a loss, I have people that care. And that makes all the difference. So thank you…

I am not a warrior without the people that surround me, pushing me to fight during the times when I most don’t want to. This is directed towards many individuals who have stood by me, and are still standing by me. I am grateful and blessed because of it.

two women standing in the middle of the road
Sadie (left) and a friend.

Follow this journey on Blame the Tick.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


You probably don’t quite remember the first week of classes because it seems like a distant memory by now. I was the student who came up to you after class and handed you a sheet of paper from the Health Center explaining that due to various health problems, I may need some accommodations during the semester. I remember you glanced at the paper, looked at me and then back at the paper. You then placed it in your bag and said, “Thank you,” and all I wanted to know was what was going through your mind.

You probably don’t even remember me giving you that paper because I may not seem like the typical student who needs accommodations. Although some of my symptoms are visible, my illness is invisible to the naked eye and deep down inside, my body is slowly burning from the inside out. Not once this semester have I needed to use any of my accommodations. In fact, I have only used them once in the two years I have been here.

It was last semester when I needed to be admitted to the hospital for a ketamine infusion. This is the only treatment that has ever worked in the five years of having complex regional pain syndrome (CRPS). I requested to take my finals a week early. Yes you read that right, a week early! It certainly added on the stress when most students take advantage of the extension but all I wanted was to not be in as much pain. At the end of that week I was worn out and spent five days in the hospital for treatment to get my nerves to calm down.

The only other two times I needed accommodations were when I had an appendectomy and my cholecystectomy. Missing classes and taking exams at a later date were the only accommodations I used but these are given to any student that receives an emergency surgery. With CRPS, surgery is not easy; it is 10 times more painful and it always causes a flare and I have a longer down time but I somehow managed to force myself to go back to school within five days of both operations.

So as we head into the final weeks of school and start finals, please remember this: It is a stressful time for everyone. Not only do I have your final to worry about, I have five other ones plus a project and a few essays.  I am also in a bad place with my health at the moment. I have so much on my plate and I am starting to wonder how I will ever get it all done. Just know that while most students are pulling all-nighters in the library trying to cram before the huge exam, I am also pulling an all-nighter, not because I want to, but because the CRPS puts me in too much pain for me to sleep. I will still get ready for the day when my alarm goes off at 7 a.m. and I will show up to class and take that final with no complaints. I am also spending any free time I have while at a doctor’s appointment or at physical therapy reading over my notes and studying. I spend valuable time driving back and forth to Children’s Hospital of Pittsburgh which is about a two and a half hour drive from my college that I wish I could use as studying time. I am under an enormous amount of stress and my body in unable to handle stress properly.

girl wearing hospital gown in hospital bed
Nora in the hospital

So even though I try and never use my accommodations, please try and be accommodating. I don’t like to admit that I cannot keep up and that I need help. Remember that your final is not the only one I am taking and I have to spend my time studying for everything else, too. I would say I do pretty well in my classes considering everything else going on in my life right now and I want you to see it so you can understand. This is how hard I am willing to work and I hope you are able to work with me.

So when I come and sit down at my desk for my 8 a.m. final on a Monday and I look absolutely exhausted, just remember I probably only managed to get an hour or two of sleep and that I spent most of my time studying while I was at a medical appointment. Not everything is how it appears on the outside and there are often a million other things going on in my life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I have limb-girdle muscular dystrophy (MD); I was diagnosed at age 24. I started to get symptoms around 2009. While in graduate school for fashion design and merchandising, I began to fall repeatedly; my leg would just give out on me without notice. I wasn’t able to pick myself back up; I would need assistance from someone to lift me up with all their might. I also began to notice that I was unable to lift my right arm up all the way when I tried to reach for certain things in the kitchen cabinets, or exercise. At first I thought maybe I needed to go on a diet and lose weight, but in the back of my mind I knew it was something more.

Keisha Greaves
Keisha.

First I went to see an orthopedist, but was referred to a neurologist. The neurologist gave me a muscle biopsy, MRI, EMG and other tests. I was finally diagnosed with limb-girdle muscular dystrophy. Limb-girdle is a form of MD that affects the limbs from the shoulders all the way down to the legs, and it progressively gets worse.

The first thing I thought was how long am I going to live? Will I be in a wheelchair soon, and what is my life going to be like from now on?  I knew I had to be strong and continue to do what I have to do. To feel healthier, I joined Weight Watchers with my cousin and lost over 36 pounds. I’ve been able to keep half the weight off, and I am still determined to lose more.

There are multiple types of limb-girdle muscular dystrophy, and five years later my doctors are still trying to figure out which type I have. They do know that the types I may have can affect my heart, so I get regular echocardiograms to make sure everything is OK.

Living with limb-girdle muscular dystrophy is still new to me. I wake up every day not knowing how my legs are going to feel or how much pain I may have. I try to be very careful when walking because if I fall, I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain number of hours, my legs start to weaken. I am currently a visual merchandiser for a very popular clothing store. I enjoy my job because it keeps me and my legs active, and I enjoy traveling to the different store locations and doing what I love in the fashion industry.

I have the wonderful support of my family and friends, but at the end of the day, they have little idea what I go through on a daily basis. I try to explain to them how my legs feel, but it’s hard. I still go out and enjoy my life, but I always have certain things in the back of my mind. When going out I find myself researching where I am going first, asking does this place have stairs? Does it have an elevator? My friends and family have no idea I must think about these things.

Living with MD has made me realize how strong I am. I sometimes get stares because people wonder what a young girl like me is doing walking with a limp, with a cane, or parking in a disabled parking spot. But I don’t mind, because they just don’t know me. Although my MD has progressed over the years, I have learned to accept it and make certain changes to my life, such as walking with a cane to keep my balance. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know.

There’s no cure or pill to “fix” my muscular dystrophy. But the endless support from family and friends helps. Living with MD is the hardest thing that I have ever done, and I consider myself much stronger for doing it. Never, ever underestimate the power of your desire. I believe if you want to live badly enough, you can live. The greater question, at least for me was: How do I decide the way I want to live? That is the question I’m still working on answering.

Follow this journey on Life With Muscular Dystrophy. If you would like to buy one of my t-shirts, head here.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Dear cerebellar vestibular disorder,

Can you believe it’s been over 30 years now that we’ve been together for better or worse? It’s a weird platonic “marriage” with no option to divorce you. So I have to learn to compromise with you. You have been a great mentor and teacher to me.  You’ve changed my life forever in a multitude of ways, and taught me life lessons that have transformed me.

You’ve been a hard teacher. A boot camp drill sergeant, but with a soft heart under the gruff exterior. The lessons have often been agonizingly painful, but just like heat strengthens metal, you have strengthened me. You’ve led me to find ways to teach those life lessons to others both with and without this life-altering disorder.

Sometimes you force me to struggle bitterly, but what doesn’t break us makes us stronger, or so the adage goes. One of the hardest things I’ve had to learn is to ask others to be kind, compassionate and patient with me. I’ve learned the scary lessons about putting myself first and saying “no.” You’ve done a great job at making me assertive, outspoken and poised, and you taught me to advocate not just for myself but for others as well.

You’ve taught me that winning is more than the book definitions — winning is succeeding over the odds even when you come in last. Winning is succeeding after a number of failures. Winning means starting over after failures and mistakes.

You’ve taught me to put my health and well-being first, even when others balk and get annoyed. You’ve taught me that 24/7 energizer bunnies do burn out. The strongest battery needs recharging sometimes. You taught me to appreciate rest, relaxation, naps and meditation.

You taught me the true meanings of self-love and acceptance, how to be happy in the moment and to take each day as it comes. You’ve taught me that nothing is accomplished without asserting oneself, no matter how much anxiety is involved.

You’ve taught me CV pride and CV poise. To get through tears and fears. And to keep going and not drown in failure or “pity mode.”

Marsha Lampert
Marsha.

You’ve taught me to ask for help. I’m still learning how not to cry when I get turned down by others, and how to keep seeking help. I’ve learned to keep hope alive. I’ve learned I can’t do it all alone — I need people, despite my social fears.

You’ve taught me to forgive myself and not give up on life. You’ve taught me that sometimes it takes a lifetime to learn something. Life is learning and learning is life.

You’ve taught me to get back up after falling down, even when my heart is filled with panic. I’ll never give up trying and learning. Thank you.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


It’s only been a year. A year with therapy, meetings, tears, laughter, meltdowns and milestones. A year with an autism diagnosis. December 3, 2014 was a day our family changed; it was hard to conceptualize the enormity of how we were going to change in the 365 days to come. December 3, 2014 was a day that plays over and over in my head.

It started with Dr. B walking into our home and watching our 2-and-a-half-year-old run around from toy to toy, with a big smile on his face. He is a happy little guy. He smiles big, and his hugs can melt your heart over and over again. However it took her 45 short minutes of interacting with him to then just simply say…

“I feel comfortable diagnosing him on the spectrum.”

My stomach dropped; I looked at my husband, and he looked at me, but we quickly new better than to look at each other for too long because I saw it in his face that we were both going to breakdown.

I responded back with “OK.”

With that she smiled, and said, “Wow, you must have known because you don’t seem surprised.” I was shocked by that comment.

What’s a “normal” reaction to an autism diagnosis? I calmly responded with, “Well I don’t know you, and I can assure you I will cry the moment you walk out this door.” She talked a bit more, and I didn’t listen; I just wanted her out of my home. She was so calm and almost insulted by my non-reaction. Did she want me to cry and breakdown? She left. I cried.

My husband and I didn’t talk much that day. We met my family at our annual Christmas walk and dinner and took lovely photos, ate great food and had one too many glasses of wine. We didn’t tell anyone but my mom. I begged her not to tell my dad or anyone else. My husband and I needed time to really grasp the magnitude that was his diagnosis. We didn’t understand it, nor did I understand how to casually drop it into a conversation at the park with my mommy friends or on a playdate. What was I expecting from their reaction? Did I want one or not? Would they judge him? Would they judge me? So much anxiety would flood me when thinking about it to myself; I did not have it in me to talk about it with others.

After a few months we slowly started telling people. Telling my brother was hard, telling my best friend of more than 25 years was nerve-wracking. Watching my husband struggle to even say the word “autism” has been and still is extremely heartbreaking. I ended up writing a letter to my sister-in-law, and my husband called his parents after five long months of saying, “I will call them tomorrow.” The anxiety around autism conversations last year was constant and always on our minds.

It was an awkward first year. We didn’t know how to say it, we didn’t know how to act about it. I finally wrote a long and detailed email and sent it to grandparents, aunts, uncles, cousins and friends. It was exactly what I needed to say without everyone watching my eyes fill with tears and my voice become shaky. It took us nine long months to actually tell “our tribe.” We heard many different comments like, “The longer you hide it, the bigger of a deal it makes it,” and “Just tell people,” or “I wouldn’t tell anyone either,” “He’s so young, how do you really know?”

We were confused this year. We were dipping our toes into the shallow end, and thankfully we now feel comfortable to dive right in and tell anyone (when appropriate). It’s nice to be able to talk about autism and spread advocacy when I can.

 

I woke up this year on December 3, 2015 to Milo yelling in my ear, “Mom, please can I watch movie?” My first reaction was to say, “No, go back to bed!” It was still dark out. Then it hit me — a year ago we were struggling to communicate with him. He had very limited verbal communication, about nine words. A few months earlier his speech evaluation graded his age equivalency at only 9 months old. A year later — 365 days later — he is talking in full sentences, something I wasn’t sure he would ever do.

family photo

family photo

The amount of support he has gotten through his early diagnosis has truly been life-changing. Yes, one year ago I was angry at his diagnosis and that lady who so calmly walked into my house and told me he is on the autism spectrum. Today I have come to see it as the most crucial and beneficial day for my son and for our family. Without the 20-plus people working with my son, he wouldn’t be where he is today, and our family wouldn’t be the same. My husband and I have come to understand and love all the amazing people who have come into our lives because of his diagnosis. Most important, this year, we survived, thrived and are embracing our journey.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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