The Best Medicine

ALS can be hilarious. Allow me to elaborate why I am discussing this topic with you. When I was diagnosed with this horrible disease, all I could see was the negativity it causes. All of the gloomy feelings and emotions that was experienced, just seemed to fuel the depression. Everything seemed hopeless and grey. This is the natural tendency of how people who are diagnosed with ALS feel.

When something of this magnitude happens in an individual’s life, the people surrounding them might not know how to handle it. I was so far down mentally, that I failed to recognize how bad my behavior was affecting the people around me. I lost many of my friends, colleagues and family members when I was diagnosed. This could have been caused by many other reasons, but I decided it was because of ALS. Which in turn, just added to my depression. Do you see the pattern developing here?

 

Everything seemed hopeless and grey. This is the natural tendency of how people who are diagnosed with ALS feel.

We need to realize that ALS is not just about the patient. It includes everyone around them as well. I failed to account for everyone that was a part of my life. I could not understand why so many people were avoiding me. I did not grasp how shocked and sad they were. It may have been easier for them to just avoid me and the situation all together.

Prior to ALS, I was very social. I loved to start conversation with people whom I had never met before. I liked talking with people and learned to communicate from this behavior. Well, to be honest I found it to be entertaining for me. I considered myself to be a people person and enjoyed the company of others.

I realized and soon accepted that I have the responsibility for creating a safe and positive environment for the people around me. Which is very difficult to do, but it is very crucial, especially for those who are closest to you. 

 

 

If I create a friendly and safe environment, I discovered that people could look beyond the disease and see an actual person. It seems to be working since the relationships I have lost have been replaced by new ones.

It all starts with me and how I choose to be. If I can learn to laugh at my disease, then it allows me attract a positive atmosphere rather than gaining negative attention. I also believe that if laughed and smiled more, the people around me would be more comfortable. This opens up quite a few interesting conversations with people, which is what I like.

So what is funny about ALS? For one, the way that ALS effects my body movement. I lack of movement to be precise. The noises that I make when someone is helping me get dressed or when my caregivers are asking me questions while in the midst of chewing a mouthful of food. These can be either saw as sad or funny situations. I choose them to be funny, what about you?

 

Two little girls laughing on a sofa. Photo Courtesy of simpleinsomnia.

Sometimes when my teeth are getting brushed, someone or something makes me laugh and it sprays all over the place. That’s funny. When someone is helping me get dressed, sometimes my finger or toe gets caught in the material by accident and makes me screech. That’s funny. When I catch myself with an itch that I cannot scratch, I don’t realize I am wiggling and squirming while making ridiculous noises. When I picture myself doing this, it is funny. These are simple examples that provide pure entertainment for my wife and kids, in the best way possible.

About a year ago, I had a pilonidal cyst removed about an inch above my anus. Well, it still hasn’t healed yet and there is an opening. So I literally have two buttholes. This opening also bleeds so I have a “man-gina” which is followed by statements of a “man-period” or a “man-cycle.”Boy if nothing else comes from this experience, I sure have a better appreciation for what women have to deal with.

Sometimes I have bathroom accidents and messes are made, my catheter leaks or I burp and/or fart really loud. I sneeze which results in snot hanging out of my nose or on my face. You know, normal, everyday stuff.

 

 

Physical therapy student Ashley Testa ’11, shares a laugh with a Legacy Senior Living resident, where she volunteers. Photo Courtesy of Nazareth College.

 

I started to notice what made my family laugh and why they would laugh. It is not in a sadistic or evil matter, but in a pure comical way. Basically, comic relief. There it is. That’s the words I was looking for. Laughter is the best medicine.

I am already preparing my next material for when my disease progresses further. Besides, if nothing else comes from this, at least I have something to do. Look, I have been preparing myself to accept the residual effects of ALS, so I might as well enjoy my journey. I think this is a much better alternative than being depressed and giving up. Don’t you think? Well, until next time.