Mike (Role Models part 1)

Do you like text messages, body casts, people named Mike, and green backgrounds? I don't think this comic has much to do with the topic this week, but it does have Crip Girl (woman?). 

I am starting a multi-part series about some of the roll models (get it?) I had growing up. I will talk about 6 or 7 different aides in the coming weeks. If I don't mention you I will eventually. It's my goal to make everyone that has impacted my life laugh (I think he means cry. He's a monster!). I will tell you who is coming up. Mike, Chris, Aaron, Charlie, Josh, Stephanie, and maybe a mystery one. Caregiving dynamics are complicated as some of my stories in the coming weeks will show. I get too close or did or still do. I have a hard time with the professional part. Still, my best friend was my aide first. And a big reason we became best friends is that I need help with everything and that requires a certain amount of vulnerability. Also, I am bad with professional boundaries, and I assume if you wipe my ass, we are best friends. In the case of Jacob, I was right.

To protect a small level of privacy I will not use people's last names. Some of this might seem sad and it probably is. But I would not trade a single moment with these people. In a real sense, they were my older siblings and I loved and still love them even though we’re not around each other anymore. I want to start with Mike for a couple of reasons. The main reason is that he was just fun, I only have positive memories of him. The second reason is he was the last group of caregivers I considered role models. After that, my caregivers became my equals. They were no longer ahead of me in life, they were next to me. I was experiencing life at the same time they were. This would change again when I got my trach surgery. 

I should probably just message this next part, but I think everyone would miss my monologue. Mike, I miss you and your family. It kind of feels like when you are a kid, and your best friend moves away. As a kid, you try to stay in touch but it’s hard and easy to drift apart. Forces larger than yourself pull you apart and as a child, your options are limited to fight it. You have a sense of loss, helplessness, and unfairness. Maybe you blame your parents but as you get older you realize that life has a tendency to pull relationships apart. I think long-term friendships are rare. I have been lucky to have multiple long-term friendships and they are some of my most precious gifts (lame he made himself cry). I want to be clear that I am not angry or anything, I know life happens. You and your family hold a very special place in my heart. Before I get into the different stories, I just want to say thank you. Thank you for sharing your family. Thanks for letting us give wheelchair rides to your kids. Thanks for taking care of my brother, epic videogame battles, summer camp, and delicious homemade Alfredo sauce. Thank you for having one of the coolest last names I have ever heard. I still consider you an older brother. The words and understanding eluded me when I was younger to express my gratitude. The time with you in my life was one of my favorites.

We knew Mike from church and when it was time to hire an aide for Brandon to have during school, we picked him. They pretty much let us do whatever we wanted in school. If we wanted someone to work for us the school district paid for it. I could tell you hundreds of stories about my friend, but I will try to focus on a few.

Eventually, Mike was our home aide and would work with us after school for a few hours. This consisted of about 20 minutes of homework and 2 hours of video games. My hands have got progressively worst over the years so when I look back at this time it’s not just with rose-colored glasses, my body worked significantly better than it does now. I was at my video game peak during this time. I think I still have calluses from Call of Duty 2. My aide Chris, brother Brandon, and Mike would have epic split-screen free-for-all battles. Mike would sit in my brother’s green and grey gamer chair. It was an interesting sight; the chair was originally for a middle schooler and Mike was at least 6’4”. We spent most of our school afternoons repeating this pattern. It didn’t last forever the crip-helping business doesn’t pay exceedingly well when you want to support a family or for any reason. We had a lot of turnover for this reason. The main thing I get from this is the special times in your life don’t last forever. I don’t think that is necessarily a bad thing. What makes life special, and crappy sometimes, is that life changes. Moments don’t last forever. The stories from my past are precious because of this reality.

The second story is about when Mike started his family. We used to give wheelchair rides to his kids after church. It’s crazy that they are both in high school now. I give my best friend’s kid rides now and that seems crazy too. I know I shouldn’t be amazed that time moves forward but I am. Another thing that stands out (ableist) is that my lungs decided to stop working around this time. After all the trauma I went through getting my trach one of the things I looked forward to was getting to give rides again. When I finally got to give rides again it helped to heal a part of me that shattered in the hospital. I didn’t know if anything in my life could return to something resembling normal. I lost a lot, but I didn’t lose everything. They showed me that I still had things to do. 

This might sound funny when I think of the people that have impacted my life I think of a scene from the finale of “Scrubs”. Spoilers coming up but it’s been more than 10 years so stop reading this blog and go watch it if you haven’t seen it. Anyway, the main character JD is leaving his job at the hospital for the last time. He is picturing all the people that he impacted and that impacted him. And he is not sad those memories were warm and comforting. I feel the same way about not just the role models I will be writing about for the next few weeks but everyone that has impacted my life. What I would like you to take away from the post this week is to live life like one day you will be looking back at your memories and know the best moments in life are not permanent. Enjoy the present as much as you can because you never know when those moments will become your precious memories. If you have anything to say about what I write, please leave a comment even if you hate it. Until next time crips and non-crips, I believe in you.