When this post is published in about 45 minutes, it will be February 7th, 2020. That is a significant date for me because exactly fifteen years ago on February 7th, 2005 was the last morning I took steps by myself.
That morning was not an ordinary morning at all. It started really early before 6am and involved going to what is now known as Rutgers University Hospital in Newark, NJ. I know it was early because I vividly remember how easy it was to find parking. If you’ve been there, you know how tough parking there is.
The reason I was there that morning was because, as you might have guessed already, I was having a lengthy surgery. I was there for Tendon Release surgery on my Achilles and Hamstrings. My ankles and knees were bending because of the progression of Duchenne Muscular Dystrophy. They basically go in and cut the tendon to make it grow longer which straightens out my feet and knees.
I want to clarify even before the surgery I had already started using a walker and was really struggling. I was probably going to have to start using a wheelchair within a few months anyway. The doctors and my parents knew going into the surgery that there was a 50/50 chance I was going to be able to rehab enough to walk again. It turned out that I couldn’t get enough leg strength back. I spent two months exactly away from home at Children”s Specialized Hospital rehabbing. I was happy to come home on April 7th, 2005, even though the house now needed to be made wheelchair accessible.
I have to say, I don’t enjoy thinking about that whole experience because of all the pain I went through. However, the date always reminds me of that period. It is hard to believe that was fifteen years ago but it definitely made me a stronger person. There was really no other purpose for this post than just venting. I don’t really remember how walking felt but I miss it occasionally when I encounter something inaccessible.
I will say that getting to use a wheelchair after all of that happened was such a freeing experience. Going from really struggling to walk to using a wheelchair is not the worst thing ever. I know a lot of parents of kids with DMD read my posts so I wanted to address them. When it is time for your child to start using a wheelchairI understand that there will be a high range of emotions but try to look at the positive in it. Your child may be excited because they can now move around with getting exhausted. My message is that a wheelchair doesn’t have to be a negative thing.
When someone is in a wheelchair like me, they get used to hearing certain comments routinely. Comments such as, “Do you need a license to drive that?” and “You’re lucky you get to sit all day.” They’re both usually implied as a joke but can get quite annoying. The first question was something I heard constantly when I was younger but still hear on occasion. I can see it being a serious question but at this point, it is just an annoyance.
Now for people who say, “You’re lucky you get to sit all day,” I have no patience for. That is something you just do not say to a person. It used to bother me a lot as a child because it took a long time to get used to seeing myself using a wheelchair. Everybody deals with it differently and the person you just said that to might be having a difficult time accepting it. It could potentially ruin that person’s day even if it was meant to be a joke. My message would be to think about what you are going to say someone before doing so. My response to that comment these days is, “Want to trade legs then?”
After using a wheelchair for 13 years, there are many things that don’t cause me fear anymore. Mostly things like the way people look at me. However, in those years and for the foreseeable future, I will have the fear of going flying out my chair. Many people fear things without ever experiencing them or trying, well this is not one of those cases. In fact, I have two specific instances I vividly remember from over a decade ago where I basically “flew” out my wheelchair. By saying flew, I am exaggerating slightly but I most definitely fell out. One time I fell forward and the other I flipped backward head over heels.
The first time I fell was at a party and I fell in a very crazy way. I cannot remember exactly how old I was but it was early on in my wheelchair using career. At this party, all the kids were in an area outside of the actual party. Now, if you’ve seen a normal wheelchair you know they have anti-tippers on the back that prevent the wheelchair from tipping over. They also turn up and down which is important to this story. Mine were turned up because they would hit going up the makeshift ramp on our van.
Going back to the party, one of my cousins happened to be standing on the back on top of the anti-tippers. I, of course, was telling him to get off but he wouldn’t so I bent forward and with as much strength as I could produce I leaned back. Little did I know, he had stepped off five seconds before. I don’t know where my strength came from, but somehow the whole chair flipped back and I kid you not, my head landed on my cousin’s shoe. That, in all honesty, prevented a concussion. Obviously, I was in shock and started crying. People came running, including an older cousin, who was a doctor so he immediately checked me for a concussion before I was even back in my chair yet. That was the last time I forgot to check my tippers.
The second time I fell, I didn’t get out of it unscathed. It was a Sunday morning when I was ten years old. Now in my room, I had a mattress on the ground my dad slept on in case I needed assistance. On this particular day, we were setting up my first computer so I was quite excited. I decided I would help so I got close to the mattress and bent forward to grab some sort of cord. Well, thinking I was smart, I had not put my seatbelt on. As you can expect, gravity acted and sure enough I started to slide in almost slow motion. My dad ran from the other side of the room but by the time he could reach me I was on the ground screaming in pain. The worst part was that I missed the mattress directly in front me and landed on the wooden floor. Somehow from that, I managed to fracture the hardest bone in the human body to fracture, my right femur. I was in a leg cast for a couple of months. Ever since then, I have a mental freak out if my seatbelt is not on while in my wheelchair.
One of the things I get asked the most often is, “Can you stand?” Well, the simple answer to that is, “No, I can’t.” That has been the answer since the middle of third grade. Sometimes random people in public ask which can be annoying especially when that is the last thing on your mind. For the most part, the question usually gets asked at doctors’ offices the most when the nurses want to get my weight. During those moments I really do not mind because it is basically a routine that occurs all the time since it may not be the same nurse. Although you would think that would be written in my chart somewhere. Out of all the different specialists I visit, the only location that I can see how much I weigh is when I visit Dr. Diamond at Children’s Specialized Hospital. They have this sling that goes under my legs that attaches to a lift which has a built-in scale. It almost looks as if I was on a swing.
Now the answer of, “No, I can’t” is not exactly accurate depending on the way you look at it. The answer is technically correct but I do stand every day. You may be completely confused at this point if you do not know me personally. If I was reading this I would be thinking, “How can he stand if he is saying he can’t?!”
The answer to that is fairly simple, my wheelchair is a stander. If you don’t know what a stander is, it basically puts you into an upright standing position. My wheelchair has the ability to lay down and tilt which in turn can go up into standing position. In order to do this, I have to put a knee block on so my knees do not bend out which is shaped like a T. I also have a chest belt that I usually always wear but when I stand I do have to.
Some of you may be wondering why I need to do this. At this point, the main reason is that it is beneficial to my health.There was a period after my chair had a broken part where I was reluctant to stand for a good year after it was fixed. During that time I became sick a lot more often. After my physical therapist pushed me, I realized it was for my own good and I started standing every day again. I have not really become too sick every since then. Some other benefits are that it helps me with my digestion since I sit in the same position all day and it helps my back since I have slight scoliosis that has not become as bad as other people at my age with Duchenne Muscular Dystrophy. Many my age have needed spinal fusion which I have avoided. I believe my standing every day has had a direct effect.