the Crip Guy

Do you like short stories, music fests, crip pics, and the Shut-Ins? The Shut-Ins played the Fairport Music Fest 23' and like usual they were amazing. The set was punctuated by a bunch of original music. I love that they are writing their music and hope they continue. The first show I saw of the Shut-Ins was a year ago at the same festival with Megan. This year I got to see the band with my mom, Mary, and my best friend Jacob. It was great we had some kombucha and Italian pretzels. If you go to FBC (Fairport) trust me and get those pretzels, I could eat a whole bag by myself.  It was outside and packed. The scent of the grill could be smelled wafting through the air (wafting...wow good word). This might be my last outside concert this year and I was glad I was able to spend it with the Shut-Ins.  Now this wouldn't be a crip guy story without some "interesting" interactions with people. The first part of this story was uplifting to the human spirit and the second made

Do you like fishing, good stuff, and fireflies? Then this week might be perfect for you. It’s been a while since I posted an illustration, so I hope you enjoy it. My posts have been a little, let's say dark. They had to be with the subject matter. Life can be sad, unfair, and cruel sometimes. Brothers fall, friends pass away, and people you thought would always be there, leave. It feels like the bad stuff outweighs the good and it's easy to get discouraged. Still, it's important not to stay there. I don't want to stay there. Being sad is a part of life but so is being happy. Even during the worst parts of my life, there has always been something good I could focus on. I wish those good things were bigger and more frequent but that might be a universal human desire. I want to try to focus on the happy parts for this post. So, I am going to tell you some of the good things that have helped me get through the bad stuff. I'll let you know now most of the good stuff in m

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 Andr

Do you like turtles, dads, and pink bunny slippers? This week is an illustration and I hope you can guess who the turtle is. I will get back to my role models series in a few weeks. It has been a rough couple of months (years?). The next post is going to be a reflection of the last few months. It will be sad, mournful, hopeful, and angry (he might swear...gasp). You might be used to that by now. Now let's talk about fatherhood (it will only make you cry twice, tops). I would have liked to have the choice to be a dad. I don't know if I would have chosen it, but I hate that I didn't get to make that decision. Maybe it would have been too easy if I had been healthy. I needed a challenge and took it too far (I think he is being sarcastic). I don't even talk to Jacob (my best friend) about this dream. He can't help, no one can. People want to help and when they figure out they can't it's uncomfortable. I don't want to do that people. Yet for some reason I wan

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 as

It's Mother's Day and I will try to finish this on time (He didn't). This year I have been writing overly honest and emotional personal letters for the people closest to me. And my mom wants one for Mother's Day and one for her Birthday. So this one is public and her birthday one will be private. I just want everyone to know she gets two while everyone else just got one. If you get jealous blame her. Normally I make people cry I don't know why she wants two. But I will do my best to explain to you why my Mom is a role model to me and why she should be to you. My mom didn't get the best Mother's Day this year. She was in the middle of a vacation when my brother fell from his lift and broke both femurs. Once my mom heard the news she drove about 8 hours from Kentucky to get home. My parents don't leave us alone in the hospital. Even the best hospital isn't equipped to deal with someone with our level of disability. It's too easy for something to go

The next few weeks will be happy, funny, ridiculous, and probably weird posts. The last couple of weeks have been a little depressing, I will admit that. This post will be sad in some ways. That wasn't what I was planning this week but life has a way of changing plans.  I promise that this blog is not all doom and gloom. Ultimately this blog is about hope. I deal with loss in this blog. I deal with loss of ability, work, relationships, family, and friends. And those topics are inherently sad. However, I try to put some lessons learned or at least something funny. I deal with hopelessness a lot and this blog is where I go to fight that feeling.  On May 6th the Duchenne community lost another fighter, Andrew R Longwell. I wasn't as close to him as I would have liked, but I did watch him grow up. I saw him at camp and various MDA functions over the years. It's weird this sense of connection you get with every person with Duchenne. You could be a complete stranger with this dis