the Crip Guy

Do you like lamps, bungee jumping, and red shirts? This week is the first issue in a new series "My Adventures with Death". Should I be concerned that thinking of different ways to kill a character is effortless? I hope you find it funny albeit dark (albeit? someone started using a thesaurus). Joking about death is one of the few coping mechanisms I have and yes I am playing the cripple card to justify that (he is basically a hero). Alright, let's delve into my mind. Living is hard. I talk about death often enough on this blog that some people might get concerned (I'm sure the comic isn't helping). Living is what I want to talk about this week. If I am honest I am on borrowed time. It's easy to dwell on the painful parts of life. I could be bitter or a bigger a$$ hole like my friend said. Even though I joke about death regularly it's not what I want to leave behind. I want people to know I lived. Despite not getting the best starting roll, (D&D?) I nev...

This week I will try something new-ish and give some advice that I have learned the hard way. I'm not really qualified to give advice but that hasn't stopped me before. If you get something out of it, it's a bonus.  I will publish these types of posts in between my full posts. There may or may not be illustrations with them. I don't like going weeks without posting anything (what if they forget about you?). If you like it or hate it let me know or leave a comment. I read all your messages. Anyway, let's get to the rest of this experimental post.  Over the last 2 years or so I have tried to push myself to live a life I could be proud of. I have done stand-up, let my friends and family know how much they mean to me, made a blog, taught myself to draw, and had a few adventures. I experienced more pain and loss than I thought possible. I said goodbye to a few friends and loved ones. And made a few new friends. Every setback and triumph in the back of my mind I think the...

Welcome to the conclusion of a pain in the ass! Kidney stones will be talked about in great detail. I did manage to get an illustration that fits this week’s theme (good job!). Do you like surgery stories, snake metaphors, and attempts at motivation? Then you are in for a treat!   I wanted to use a train metaphor for this surgery but one of my friends said it was inappropriate. So, have you ever seen a snake swallow an antelope? It looks like it should be impossible but then the snake unhinges its jaw and does it anyway (that is a worse metaphor, Justin!). Sorry, it’s like that but also in reverse.   Before I tell you this story I should give you some background information. I got my first kidney stone about halfway through 5 th grade. At 10 I thought I was dying. it was a good run, right? Do you know who is not supposed to get kidney stones? 10-year-olds. My body tried its hardest to beat me up during my childhood (sure just your childhood). It eventua...

Do you like hospital gowns, multi-part episodes, and censor bars? This week I continued the epic surgery story saga and I did an illustration. Hopefully, it will not get me in too much trouble (think of the children!). Enjoy! Last week I talked about an ER visit that led to two surgeries in a month which was a new record for me (overachiever). It was a month of anxiety, dark humor, pain, healing, loss, and a better outcome than I could’ve imagined. The whole month was an emotional overload for more reasons than just surgeries, reasons that I will talk about at some point in the distant future. Anyway, let’s get to the first surgery and title of this article. The thing about Duchenne and maybe just degenerative diseases, in general, is you get used to losing abilities. You get used to things only getting worse. That doesn’t mean giving up or that life can’t be meaningful, fun, and beautiful. It’s just that life goes in one direction and seldom deviates from that, at least in my case....

I had a rough month for many reasons but for this post, I'm only going to talk about my month-ish of surgeries. I’m going to try really hard this week not to make anyone cry. However, some of the descriptions of the surgeries might be graphic this is your warning. Also, I’m splitting this post into two parts. All right let’s get to the main part of this post. If someone looked like they had dozens of surgeries, it would be me. To put it another way, if you lined up all my friends, I would win most likely to get cut open (too graphic? Just wait). I've had one life-threatening surgery the rest have been minor. Tangent, when I was younger, I would have to explain that no surgery could fix my disease. Anyway, I could do a couple of posts about that first life-changing back surgery, and I will at some point. When I look at my life that surgery was one of the largest inflection points (wow…MATH!!). My month of surgery began at the end of December with an eight-hour ER visit.   ...

I'm giving everyone a heads-up that my next couple of posts might be more raw than usual. I try to encourage people or make them laugh. For the next few posts, I might just use it to vent. Sorry in advance and I will get back to my more positive roots soon. Anyway, let's get to this week's post, Music. Music has played a big part in my life. I have talked about music before and how I miss it. Today I want to talk about how in my mind different bands represent different people from my life. Chris one of my High School aides, is represented by the band "Dashboard Confessional".  That might sound weird and he probably doesn't like that I make that connection. Still, he used to sing music I never heard of and I looked up to him. I cherish my memories with him and those memories have a  "Dashboard Confessional" soundtrack.  This pattern continues with so many people from my life, both past and present. Purple was one of my first home health aides. Don...

Do you like recap episodes, flashbacks, and trying to look for the bright side in life? If you said yes to any of those questions you are in the right place. You should still read even if you said no. I need that Dopamine hit from your approval (he's mostly kidding, I think). Well, that break was longer than I had been planning. My last post was in August and maybe life caught up with me. It's one thing to say you will fight for as long as you can it's another thing to actually live it. When I first started writing these posts it was almost a compulsion. I couldn't stop writing. Crip Guy came from maybe the worst time in my life. The only control I had was writing. And that writing was dark and sad. I'm never sharing those journal entries at least while I am alive. I recently re-read those Journals and I am glad to say I am not in that same headspace. I can't say I feel 100% as you can tell from my post schedule(wait you are still a writer?). What I want to say ...

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...

Thank you if you if you read part 1 and 2 or if this your first time on the blog. I have never done a three part series before. I hope you get something from this post (clinical depression?). Most of my stories have a layer of sadness. I don't like it either. I will have some comics coming soon to offset this melancholy story. Also if this story has a impact on you please leave a comment. I don't don't know if what I am doing is crazy, so let me know. Now to the rest of the post. I guess I have more to say about this love stuff or maybe just clarify what I have already said. What I wrote before was the hopeful version (oh boy…emo crip time?). Kind of like how I hope I don’t spend the rest of my breathing through a hole in my neck. I hope I can breathe again, I dream about it all the time, but I don’t expect it to happen. I have two parts of my personality the introvert who is a little bit of a downer and a realist. And the extrovert who wants to do everything, wants to be a...