One of the most difficult aspects of living with a degenerative disease like Spinal Muscular Atrophy (SMA) is learning to cope with loss. As I age, I know that my body is going to slowly break down, and as this happens I will lose my ability to do certain things. This loss occurs so gradually that I don’t even notice it, and then I wake up one day and am unable to do something I did just 2 days before. Sometimes it is something small, like putting in your own ear buds to listen to music, and other times it is something huge, like dressing yourself, but it is always hard to deal with. This feeling of loss is a never ending reminder of the dismal place my body is heading. Thankfully, by developing the skills to cope with and accept loss, I have managed to live a full, happy life even in the face of this unfortunate reality.
One of the most difficult things for me to deal with losing was the ability to feed myself. You have to understand that even though I only weigh 55 pounds and look like a skeleton, I love to eat. One of my favorite things to do is go out to a nice restaurant and gorge myself over several succulent courses while conversing with friends and family. It’s so much fun to eat new foods and combine new flavors that tease and stimulate your palate. I also like to cook and try new recipes in my own home. I make some killer Kansas City style barbecue, just ask my family. In addition to my love for fine cuisine though, eating is also a very social activity, and losing the ability to do it like everyone else felt awkward. In my home, getting fed by someone else is fine, but out with friends, or worse still on a date, getting fed like a toddler is a little weird. It is hard to act confident when you have to play “here comes the airplane into the hangar.” Giving up this ability was also so difficult because I knew I was giving up some of my independence with it, and being as independent as possible is really important to me. Having to figure out how to deal with all of these feelings, while coping with the normal feelings of loss, was extremely difficult for me.
I did everything I could to slow down the arrival of this ominous reality. When feeding myself first became difficult, I started using only plastic flatware, because it was not as heavy. Lighter weight utensils meant my arms would not have to work as hard, thusly making feeding myself substantially easier. This worked for several years, and I carried plastic forks and spoons with me everywhere I went. Once even that became difficult, I started only eating certain, “easy to eat” foods that I could eat on my own. These were temporary solutions that merely delayed the slow march of time however, and about 2 years ago, I finally accepted the inevitable and gave in to my body by no longer feeding myself.
I probably spent 2 weeks or so mildly depressed as I tried to work through all of my feelings. As a psychologist, I could now bore you to death talking about the stages of grief and such, but I’m not. Instead, I am going to tell you about a couple of the tools I used to cope. One of the most useful things I do is something I call “putting more spin on it.” I could think to myself “Now I can’t even feed myself. I’ll never go out to eat again,” and feel terrible, or I could “spin it” and think “I don’t have to feed myself. Now my arms will have more energy for other things.” It all amounts to the same reality, but by framing it the right way, I can alter how I feel about it. Every situation has a positive side, so just “spin” your reality until you see it. You will find that this little trick is applicable to nearly any difficult situation.
The other major tool that I find helps me most in coping with loss is more difficult to use, but the effort is worth it. You have to let yourself feel the negative emotions. I know that may sound cliche, but it is the truth. If you never feel the loss, you will never truly move past it. Now yes, it is going to hurt, maybe a lot. But you have to feel it, and then you can accept it as your reality, and only then can you start working to make that reality as happy and successful as possible. It did not matter how hard I fought it, my body would no longer feed itself, so if I wanted to be happy, I had to accept that. Yes, it was painful. And yes, I cried over losing this part of me, but it was necessary and well worth it. Only after doing this, was I able to break out of my funk, and get back to living the full life I live today. Now, several months later, I am completely ok being fed by others, and I don’t even think about it.
Dealing with loss is a part of life that we all have to deal with. Be it the loss of a loved one, the loss of something you can no longer do, or losing something very precious to you, we all will go through this painful process. Only those of us with the tools to manage our feelings will be able to live a full, happy life in the face of loss. Whether you “spin it,” feel it, or do something completely different, it is only after acknowledging your pain that you will move forward. I urge all of you to find the tools that work for you, because life is far too short to waste it wallowing in loss.