the Crip Guy

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 eventually passed and I began m

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.  O

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.   My but

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 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

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

Most of what I know about love and heartbreak I learned from Alice. That is why I put her in part 2 of this series. She knew me before I got my trach before my disease started to win, and even before Jacob. She was the first person I texted when I got my cell phone at 16 (probably why I got one). She was at my baptism (ruba dub dub crip in a tub). She has been in my life for a long time. At 20 years old I was going through my trach surgery and one of the worst depressions of my life (Is there a stronger word than depression?). And at that point, I hadn't talked to Alice for about a year because of the "Confessing Feelings" story.  During this dark time, most of my thoughts were about her or revolved around her. I have this unhealthy habit or survival mechanism of latching onto women when life gets extra hard. I did it when I couldn't find a job. I did it when I couldn't keep my apartment. And I did it when I had my trach surgery and I wasn't sure I would ever

I'm doing something different for the next three posts. It will be a three-part collection of some old and brand-new posts talking about love. Most of the stories will revolve around Alice. I have chased love for most of my life. This has led to some truly cringe-worthy and heartbreaking situations in my life. It seemed like even when I stopped chasing love and pretty much gave up on  everything else, love started chasing me. This has never happened in a helpful way. It's mostly in a cruel you will never get what you want kind of way. Unfortunately, that story is for another time. I know my posts have been sporadic but for the next three weeks at least you get to hear me talk about things I really have no idea about (love). I have no idea what it is like but I know I want it. So sit back and get ready for my three-part series on love, heartbreak, crips, and Alice. I'm BACK! Let's get emotional and reflective and stuff.  If you have followed me for a while then you have