Loss part 2

This week I dedicate my post to my friend Laura, who passed away a few weeks ago. Her favorite color was pink so I painted a pink flower for this week's illustration. It doesn't feel real that she is gone. I posted a few weeks ago on her CaringBridge that if it would help I would have given up my wheelchair. When my friend Andrew passed away I wrote that he didn't lose his fight against Duchenne he finished it and I think the same thing applies to Laura.

I didn't think I would write another post about loss this soon. I have been procrastinating on this post, hard. Sometimes in not constructive ways. It's a sad and painful one for me to write. This little corner of the muscular dystrophy community seems to have been hit hard in the last few years, especially in the previous few weeks (f#%k muscular dystrophy). You will understand why in a minute.

I will try to give a general overview before I start. During May, I lost two friends with forms of muscular dystrophy Andrew and Laura. My brother fell from his lift and broke both of his legs. A fall like that and the following surgery could have easily cost Brandon his life. On top of that, our dog Morpheus passed away. I don't want to cheapen the fact that people died, but Morpheus was more than a dog to us and I will try to explain how at the end. First I want to talk about my friend Laura. 

I met Laura when I was 10 or 11 at a school activity night before the next school year started. Basically, it was a school dance plus some indoor sports. I thought she was cute and asked her to dance, but she said no (shocked). I have never been super close to people like me and she was in a wheelchair like me. When that school year started we had the same adaptive Gym class (this might have been a year later or I'm combining years it was more than 20 years ago). I learned a lot about her during this time. We had a similar disease and at the time she was physically much stronger than me. She had two siblings like me and her sister had the same disease as she did just like my brother. It kind of felt like the mirror version of my family. I guess rare diseases aren't that rare. When you share a diagnosis with a sibling it's a special bond. I get along with some people better but no one understands me like my brother. This disease and ones like it suck. I would give anything for Brandon not to have this disease but part of me is glad that I don't have to do it alone. 

Anyways, I thought she was cute and then I thought she was a brat. During Gym class, Laura would just throw stuff at me and my brother. The one time I got in trouble in school was because I said something "smart" or sarcastic to her. Granted during this time it seemed like I liked every girl and I might have teased too hard (during that time? Don't you mean still). I was angry and I stopped talking to her for a long time. My feelings for the rest of our relationship were platonic and not because of this situation. I have to watch my brother go through this disease. Unable to help and if I was in that situation with the person I was romantically interested in it would have broken me. I'm not strong enough to handle that. Still, she would become someone I would consider a friend. I don't think friend is the right word. She knew what I was going through on every level. These diseases put you in a family. It's not a family we asked for but one I am proud to be a part of. In that way, Laura was not just a friend but, family. 

We would have chorus together and summer camp. I swam in her pool. I went to High school with her sister. When I had to get an internship the one company that would hire me was her family's company. I wasn't always in her life still I saw her grow up and her disease progress just like mine. When her sister passed away I went to the viewing. I remember waiting in line to talk to her and I didn't have words for that kind of loss all I could do was poke her foot with mine. Duchenne is cruel so trust me when I tell you FA (Friedrich's ataxia) is worst. FA affects coordination this includes the ability to speak, move, see, and hear. I don't know all the specifics of why that happens. I can't move that well anymore but will never lose the ability to communicate with the people around me. In the end that was what Laura was fighting. I don't think I can or will handle my progression as well as she handled hers. I'm proud that she fought the good fight and I am angry she had to. I'm angry that I have outlived so many of my friends. It's not fair that I am still here and they are not. Laura, you were strong and brave and I will miss you.

I don't want to end this part without a little hope. I believe in the next few years there will be an explosion of gene therapies that will treat the underlying causes of these diseases. I'm going to be dramatic for a minute but for the first time in human history, we have the technology to fight back. Maybe this will be the last generation that will have to go to a funeral for these diseases. As bad as the world is some days, that thought that tomorrow could still be better gives me hope. I make this promise here that if I ever get better I will live a life that my friends that are no longer here would be proud of and do the things they couldn't do. I won't forget you. 

It seems weird that I will write about my dog after that. Morpheus came into my life when everything was falling apart. I was heartbroken for a bunch of reasons at this time. I loved someone that didn't love me back. My friends were dying, I was dying and couldn't breathe on my own anymore. Finishing my degree was up in the air, my dog died, and God didn't feel like picking up the phone (deconstruction?). I was lost and I wasn't living I was just alive. In a lot of ways, this mirrors my current situation. I'm heartbroken again for all of those reasons and more.  

When you are in the hospital for months recovering from surgery you watch a lot of shows. One of those shows was Star Trek Enterprise a prequel to the original series. In the show, the captain has a beagle on the ship. That is where I got the idea to get a dog if I ever got out of the hospital. And if you're wondering where Morpheus's name came from it came from two different movies the Matrix and Treasure Planet (he's a child). Sure enough, as soon as I got out of the hospital we got one. It was this tiny thing that I carried home in my lap. He curled up and slept the whole ride home, it was love at first sight. He cried his entire first night because we were crate-training him. Even as a puppy he just loved being around people and hated being separated from them. Our first walk lasted about a minute because he got scared and refused to keep walking. When he was a puppy we still had aides so he grew up with about 20 brothers to play with. I know this will probably start a fight but my dog was the best dog. When I got him I hoped one day I could do road trips with him and play/care for him by myself. That never happened but I still think he had a great life. 

To me and my family Morpheus represented hope. Hope that even in the worst situations things can get better. Even if your world is falling apart it doesn't have to stay that way. Part of me just wants to give up, life is too sad and hard. When he died it felt like a kick to the chest. But just because he is gone doesn't mean the hope he represents is gone. He got me through some tough times over the years. I will always be thankful for the time I was able to spend with him and the lifetime of stories he gave me. Morpheus you were a very good dog.

I don't have a monopoly on loss it's something that everyone will have to experience eventually. The only thing I can offer is that you are not alone. Life can hit hard and it's cruel sometimes. I wish it wasn't. Still, I believe life can always get better. I'm sad that my friends are no longer here. I'm angry they seemed to suffer an unfair amount. I'm proud that I knew them. I might not have been in their lives as much as I wanted but that didn't stop me from watching how they lived. I saw their accomplishments and setbacks. Their bravery against overwhelming odds. Thank you all for being my teachers over the years. You taught me what true strength is. I will do my best to live up to your legacies. 

The next few posts will be relatively lighthearted. I can't promise you won't cry, but it won't be my fault. I need a break from this topic and maybe some of my readers do too. I hope you find something in this post that resonates with you. I might not be able to help you with your grief, but just know you are not alone. Until next time crips and non-crips, I believe in you.