God, you there?

The post might be sad so the illustration this week will be a teddy bear. I usually send this drawing to friends or family that are sick to cheer them up. I hope this bear helps offset one of the more painful stories of my life. 

I have been going to church lately. I won’t lie it’s mostly for selfish reasons my best friend, his family including my “nephew” and some other new/old friends go. For some of them that is the only time I can see them during the week for others, it’s just a bonus. Before I start, I just want to say this is my experience or a part of it. If you have faith in something and you are not hurting people with that belief well that is pretty cool. Also, I know a lot of people who believe in God read my posts. This time in my life hurt and it would shape my worldview. I could break my life into two parts before and after the hospital. In a lot of ways, I was un-made during this time. On most days I have a hard time believing in anything like a higher power or God. 

For most of my life, this was not the case. I believed God existed without a doubt. I was one of those kids in High School that wore a bunch of Jesus t-shirts. One of my favorites was a tie-dyed T-shirt with Jesus on the front. Or one that said armed and dangerous with hands praying on the front. I went to church every Sunday with my family. Some weeks I would go to three bible studies, they were my social outings as well. I would talk to God like he was my friend. When I was struggling with getting weaker or just regular growing-up stresses, I would pray about it. Earlier in my disease progression, I thought God would show up before it got too bad, and I could have a “normal” life (a little naive). I had that thought the night before my back surgery at 14. And even at 20 right before my trach surgery. I learned the hard way that God does not always show up.

I was shattered. My life was shattered, and I couldn’t even fight back. With other diseases, you can treat it or maybe there is a chance you could get better or it’s stable and you can adapt. But with Duchenne, it’s a constant slide backward. As soon as you adapt to one limitation another one appears, and you must start all over again. There is not even a last resort I could take the only advice is to try to live your life the best you can and maybe someday we can do something besides measuring how fast you deteriorate (this is slowly changing). If you tell me or I believe, I have a chance in any aspect of my life I will take it. School? I will spend 7 years getting my degree. I will endure pneumonia, isolation, ventilators, and anything else life can throw at me. Friends? I will get up three hours early just in case I might see you. A girl? I will think about her way too much until I hear her say she doesn’t like me then write about her on the internet years later (healthy?). My point is that Duchenne is especially cruel. Telling me all I can do is sit in it and suffer is not something I am equipped to handle even today.

I will not be going into detail on the events leading up to my hospital stay yet but I will give you a quick overview. I finally told Alice that I liked her, and it went poorly (understatement). I trusted some people (caregivers) with this information that I should not have. Not only was Alice, gone I could not trust the people closest to me. The people I needed to be able to live. A few months later a much larger and more real tragedy would hit my life and the people around me.

My friend, longtime aide, and the person that could annoy me like no one else was murdered in cold blood right outside of his home. At some point, I will give my friend Paulie V, a post of his own. Until then know that Paulie was the kindest, humblest, hardest working, friendliest, and most caring coffee addict I have ever met. If there was one person that could make me believe that God exists and that he gives a shit (sorry I swore mom) about the people here it would be him. I have never met someone that lived their faith with as much conviction as he did. He genuinely cared for everyone he met. He was a quiet unwavering force for good and the world will always be a little darker without him here. I will never forget you, my friend.

 

While still missing both of my friends I would go into pulmonary failure a few months later. My lungs could no longer keep me alive without assistance. I would spend the next three months recovering from a tracheostomy. A surgery that cuts a hole in your throat to place a breathing tube in. Every night I would cry myself to sleep. I still believed that God existed, but I couldn’t understand why he was doing this. Eventually, I would recover, go back to school, go back to church, and try to get my life back. The only way I survived this experience and got back to something that resembled normalcy was through my family and friends. My parents never left my side and would sleep in the room. My friends visited weekly to cheer me up. On top of that Alice visited and brought Moe's for lunch. Up to that point, I thought I would never see her again.  I still believed but the cracks were there.

 

A few years later my brother would start going through what I did. He fought for a year and lost over 100 pounds before he lost the ability to breathe by himself. We share a wall and every night I would hear him struggle. When you are sleeping with a ventilator you cannot speak. I would scream and yell and cry and pray to an empty room and a silent God. When I needed him most he didn’t show up. In case you wanted to know if you torture the people closest to me, we will not be friends. Watching my brother go through this was the last straw and I mostly stopped believing in anything. A numbness would fill my life for the next couple of years.

 

Do you want to know my current beliefs? They alternate between not believing in anything and a wave of anger that scares me sometimes. If I had a body that worked, I know this kind of feeling would lead to extremely destructive behavior (I guess you lucked out?). However, I know a small part of me will always hope that someone or anyone will show up at the last minute and save the people closest to me. I don’t know if it is a Duchenne trait but the people, I have met like me continue to fight regardless of the odds. How can I do any less than the people that have come before me?

I will leave you with this if you don’t believe in anything I understand. If you have faith in something larger than yourself that is a gift because it can be dark and cold and hopeless out there. I hope you have something that can comfort you when life gets rough. Lastly, if you are fighting regardless of the odds, regardless of the heartbreak, regardless of your personal loss, I am incredibly proud of you, keep going. I will be here if you need me. Until next time crips and non-crips, I believe in you.