Now that you have had the time to let all of the kernels of wisdom from part 1 settle into your mind, you have room for a second helping of brain food. We are picking up right where we left off in part 1, beginning with the 5th item in my list of things that I am grateful for that were caused by my disability. Once again these are in no particular order, and they vary greatly in their topic and universal importance, but nonetheless they are all gifts I am thankful for. So, bon appetite!
Never having my shoes get scuffed or dirty. Like everyone else, I have my vices. Without a doubt my biggest one, ironic as it is for someone who has never walked, is shoes. I love buying and wearing new shoes. I stopped counting some time ago because it was getting ridiculous, but I know I am well over 50 pairs. For the most part they are tennis shoes (I love Jordan’s), but I also have some more casual/formal types. When you have an addiction to shoes like I do, and those of you who do will agree with this, you will only wear shoes that look brand new. You don’t want to break out a pair of fly Air Force Ones or slick Retro 9s and have them covered in scuffs, scratches, and dirt.
I know how important it is to enjoy the little things in life. Spinal muscular atrophy is a progressive, degenerative disease, which means that as I get older my muscles will get weaker and weaker. As my strength diminishes over time, I gradually lose the ability to do certain tasks. You would think that losing the ability to do major things, like feeding myself or driving my wheelchair on my own, would be the toughest to cope with, but surprisingly it is the little, seemingly trivial, things that I miss the most. Being able to wipe your own nose, use the television remote to channel surf, and brush away a fly that is buzzing around your head are all actions you do without thinking, this is the stuff you miss the most when they are taken away.
I get to eat anything I want. One of the indirect medical issues of having spinal muscular atrophy that is often overlooked is maintaining a healthy weight. When the muscles in your jaw and throat are weak from the disease, the scar tissue in your neck from multiple trache procedures is pressing on your esophagus, and your weakened lungs force you to “belly breathe” which constricts your stomach, eating even a moderate amount of food is pretty difficult. As a result of not being able to eat a lot of food, in order to keep your weight at a healthy level you get to eat anything and everything that you want. It is basically anti-dieting. Instead of cutting calories and looking for foods low in carbs, I add butter to everything and buy a lot of cookies Do you think my insurance will cover white chocolate covered pretzels as medicinal?
Knowing how fragile life is and to take advantage of every day and opportunity. We say phrases like “life is short” and “seize the day” all the time, but we often do not take the time to really think about what these words mean. The truth is that at any moment your life could be over. While this is not something anyone likes to think about, for someone with a severe, physical disability, it is an important idea to understand and remember. As my disease continues wreaking havoc on my body, I am constantly reminded of how fragile my health is. Rolling over the wrong way in bed or waiting too long to go to the doctor when I am sick, things that would be at most unpleasant for an able-bodied person, for me could be life-threatening. Having to face my own mortality on a daily basis, while scary and unpleasant at times, has helped me appreciate how precious life is.
This list, as diverse and strange as it may be, is a great example of how terrible things can still have a positive impact on your life. I hate being disabled, and I would do anything to be physically healthy, but at the same time, I am also willing to acknowledge and appreciate all of the lessons it has taught me about life and happiness. Regardless of where they come from, it is important to be grateful for the gifts you are given. As you are celebrating the holiday season with your loved ones, take some time to look at your life and see everything you have to be thankful for, no matter what the cause. This will definitely bring more happiness to your life, and it will also help you enjoy and appreciate this season of giving.