I Just Kind of Live with It
Lindsey first wrote to me after she heard through the Muscular Dystrophy Association (MDA) that I was looking for submissions to this anthology. We immediately struck up a correspondence, and it wasn’t long before her unselfconscious, low-key style won my heart. Our correspondence lasted for the better part of a year — despite the closing to her first letter that claimed, with her typically understated candor, “That is about all I have to tell about living with my condition.”
Here is a compilation of Lindsey’s letters:
Hi! My name is Lindsey Polito. I am 15 years old and have muscular dystrophy. I live with my mum, Mary, my dad, Mike, and my twin brothers, Jason and Eric, who are 9 years old. I’ve had muscular dystrophy all my life but have only known about it for about four years. I’m the only one in my family who has this disability. I found out about it through a scoliosis screening at school. The school nurse noticed that I couldn’t stand with my feet flat on the floor and together.
From there my parents and I went to all kinds of different doctors. One doctor finally had the answer. He said I had a muscle disorder. He wasn’t sure which one, so from there I went and had an EMG and a muscle biopsy. The muscle biopsy is what told us which kind I had. My condition is very rare and the doctors don’t know too much about it. The type I have is called centronuclear myopathy.* It is probably one of the best kinds to have if you have to have it. It has some limits but nothing terrible. I still have the use of my legs, and if I do everything the doctors say, I will most likely never be in a wheelchair.
The only real time that you would be able to tell I had a muscle disorder is if you were to watch me picking up something heavy or wrestling with my little brothers. The disease doesn’t bother me too much, though. I try not to let it get to me. It doesn’t affect my schoolwork too much, except I have very poor handwriting. I love school and all my friends. My disease doesn’t affect how my friends treat me. In fact, they sometimes forget I have it. Everyone, including my boyfriend, is very supportive of the choices I make. Even if I try to push past my limits, they stick by me. If I try to push too hard, they will caution me.
That is about all I have to tell about living with my condition. Thanks
Dear Ms. Hillyer,
Hi! This is Lindsey Polito. I wrote to you about my disability and you wrote back asking if I minded answering some questions. I would be more than happy to answer your questions.
The limits I have are I’m not supposed to play basketball, soccer, baseball, etc. The reason is I can’t run well, so if I don’t have to I won’t. These sports obviously require a lot of running. Nothing would happen to me if I did play those sports, I don’t think, but I’m not sure. The worst that could happen to me, I think, is I could sprain or break something. I’m a little upset because I love basketball, but I never got into sports, so it wasn’t hard to adjust to.
I am supposed to do PT (physical therapy) exercises in order to keep my muscles. I’m supposed to do walking, bike riding, and different wall exercises that are rather difficult to explain, so I won’t even try.
The thought of being in a wheelchair scares me because then I couldn’t do anything I’ve planned on doing and would have to rely on other people to wash, feed, and clothe me. I wouldn’t be able to handle it. I don’t like having to rely on people for anything. I either do it myself or not at all.
I’m not sure how to answer your question about how someone could tell I have MD, so if you don’t mind I’m going to skip it.
I’ve learned to cope with the fact I have a muscle disorder and that it’s not going away anytime soon. Learning to cope with it took time. In fact, I’m still learning. At first I was scared because I didn’t know if I was going to live or not. Once they told me this type of MD wouldn’t kill me, I figured this is how my life has been dealt and I’ll have to make do with what I have and not let it slip away from me. I used to talk to my family about it, but now we don’t talk about it unless it has been brought up somehow.
I am supported in the different things I do even if I’m told I can’t or shouldn’t do them. If I decide to try something, my friends and boyfriend help to support my choice.
Some ways I push too hard is doing something way over my limits, like trying to pick up something heavy. I’ve tried to before and ended up spraining my wrist. I did recover from it, though. I know I’ve pushed too hard if I end up hurting myself instead of doing what I set out to do.
It felt great writing about my disease. Thank you for asking me to write about it and then asking questions on what you didn’t understand.
I’m sorry to have taken so long in answering your letter. I hope it’s not too late. I’ve been busy getting ready for a party for my Opa.
I have also enjoyed corresponding with you, and I will try to answer your questions the best I can.
I’m not really sure how I learned to cope with MD. I just kind of do. I know I have it and just kind of live with it. I know I can’t do the sports I like because the sports I do like involve running, which I can’t do well. I’m not sure if this is answering your question right or not. If not, let me know and I’ll try to answer it better.
Mostly I only talk about the MD with my family when I meet a new doctor or my parents are talking to their friends. I’m not real sure how my family’s attitude is towards this. We don’t talk about it a lot because it is kind of hard on my dad. He is adopted and blames himself for it because we’re not sure where I inherited it from. My dad feels bad for me but doesn’t say much about it. I don’t think my younger brothers understand why I’m so weak and why I’m not as strong as them. My mum is the one always telling me to be careful about what I do and how I do them, and all my aunts, uncles, cousins, and grandparents, I’m not sure. I know my grandmother worries about me and is proud of the way I handle things and am so independent.
The only reason I feel using a wheelchair will limit me in doing things is because I’ve seen some of the kids at camp and I saw how some needed the counselors to feed, clothe, bathe, and help them write. I realize people feel using a wheelchair helps them do things easier or better, but I can’t get past the idea of not being able to use my legs and being dependent on other people. I think my belief stems from if I lost enough function to not be able to do a lot of other daily living activities.
The things I’m supported in is I’ve been thinking about joining the volleyball and softball teams even though I’ve been told by doctors I couldn’t or shouldn’t do these things. My friends tell me to go for it. I very rarely don’t do something because of the MD. So I can’t give any examples. Sorry!
Don’t worry, you haven’t asked too many questions.
How are you doing? I’m glad you enjoyed my last letter. My parents are aware that we have been corresponding. They think it’s great my thoughts and feelings are appearing in a book. They’re very excited about it.
You are correct in that Opa is my grandfather.
I usually go to the mall or movies with my friends, or sometimes we’ll just hang out at each other’s house. When I’m not with friends, I read a book, do counted cross stitch, play on my computer, or just watch TV with my mum and dad or brothers, depending on who’s around. I guess I also like to bake. I’ve learned by helping and watching my grandmother and mother. I remember making pizza and applesauce with my grammy when I was little.
Unfortunately, my boyfriend broke up with me four months ago, but I can tell you what I used to enjoy doing with him. I used to love playing Battleship and Nintendo with him. I also loved watching TV with him. He stayed at my house once in a while and we used to stay up until 1:00 in the morning watching Tales from the Crypt. Then we would sometimes stay up until 2:30 or 3:00 talking. I had the best times with him.
I went to camp Florian in Canton, MA, last summer. I enjoyed it quite a bit. I’m getting ready to go again.
I hope this helps you.
I’m so sorry for the delay. I’ve been very busy with school, work, and I had surgery a few weeks ago.
I have gone to camp and am back now. I had a great time. I went to the mall, we held a dance, went to the Red Sox game, the Marshfield fair, and had what is called “cabin night.” Cabin night is a chance to hang out with your cabin and order out for dinner and watch movies. All the kids at camp have MD. It is nice to have friends with the same disabilities as myself.
The breakup with my boyfriend was the most difficult thing I’ve had to deal with. I was very much in love with him. I have a lot of friends who’ve helped me enjoy myself more now.
My grandmother doesn’t live with my family and me any longer. We moved out of her house about three years ago. My grammy and I are very close. The thing she worries about with me is when I apply for jobs. She wants me to make sure they are aware if I get the job that I have the MD. She also worries when I get sick, where doctors don’t know too much about the type of MD I have. My grammy is proud of the way I handle having a muscle disability in the way that I still shoot for my dreams and try new things even if I’m not able to do it. She is proud of my ability to draw and cook, even though cooking really has nothing to do with having MD. Different ways she shows me she is proud of me is she helps me collect money for different MDA walks. She’ll also take me to the mall, or she said she would take me to Cape Cod one weekend, where I’ve never been. She also will tell me how proud she is.
I hope you got all the information you wanted. If not, you know where
to find me.
*Editor’s note: According to the MDA, centronuclear (also known as "myotubular") myopathy is not, strictly speaking, a form of muscular dystrophy but one of about a dozen types of myopathies. Muscular dystrophies and myopathies are two different categories of neuromuscular disorders.
Linda Hillyer, compiler and editor of Listen to Our Stories
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