the Crip Guy

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 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

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