The Road to Here…

Up front: thank you for all the love and support over the last two months. It’s been a stank hell to say the least and I wanted to provide an update to all the family, friends, and fans that have been worried about me. It is May 18th 2017 today. On March 18th, two months ago to the day, my father called me to catch up and shoot the shit. I was sick with the flu at the time as a result of picking up some “PAX pox” in Boston at PAX East. I am fortunate that I flew home to Texas when I did because upon arriving in Dallas, I began losing my strength, ability to walk, ability to balance, and literally had to rest on coworker’s suitcases to avoid falling over. I tried to begin explaining that it was just a flu, but I wasn’t making good with the word noises. If I had been scheduled to leave Boston any later than I had, I wouldn’t have been able to even get on a plane.

I got lucky.

(That time.)

By the time I was in the back seat of my uncle’s car on the way to the Emergency Room trying to explain why I couldn’t talk good, I’d realized that I had lost much of my ability to talk. Within a day, I lost my ability to form a coherent thought.

I perceptively lost the ability to think. A lot of the first couple of days in the hospital were a complete blur.

To no one’s surprise, the Emergency Room admitted me to the hospital at large. For the next two days, I slurred through conversations where I may or may not have been saying anything close to what I thought I was (turns out when you can’t think, you don’t know if the sounds coming out of your mouth are actually words. Ask my boss Paul. I’m pretty sure I just made the emphatic tones of mouth farts and called them fine art).

Only when the hospital put me on steroids did I actually regain the power of coherent thought. But nothing else, really.

I was confined to a single hospital room, unable to even get up and go to the bathroom so I wore a diaper, for nine days. Nine days of the same four walls, the same History Channel bullshit my dad, my uncle, and I LOVED to make fun of because they seemed to exclusively air the conspiratorial ravings of the Historical-equivalent of a used car salesman. Yeah, the Knights Templar definitely built this Rhode Island lookout tower for American soldiers quartered in Rhode Island. It was my only good memory from being confined to that hell.

Things I regret: I was so overwhelmed by the situation that I didn’t realize that I should have asked to stay in the hospital longer. It felt like I was getting better at a rate that was gonna have me back to work within the week (yeah, sorry, Randy. I was way off on that one).

When I left the hospital I couldn’t stand for longer than two seconds. At the time, this felt like predominately a strength problem. Hell, even the last time I wrote something up, it was light on details because I went from 140 wpm to 4 in the matter of a few days. I couldn’t use my hands with any accuracy. Once home, really just starting my journey, I would say that my body was somewhere around 20% of it’s normal capacity. I was falling practically every hour, so I left piles of clean and dirty laundry everywhere in my house I was likely to fall. This was a good plan, but didn’t put an end to my falling.

Not by a long shot. I’ve fallen so many times and broken the skin so many times that my legs look a coked-up soccer player running around without shin guards. Yesterday, I fell back onto my butt and slammed the back of my skull into a cabinet knob. It wasn’t that the hit itself was bad, it’s that everyone has multiple breaking points and that felt like my last one.

Last month, I saw a noticeable decrease in improvement from day to day. If I was barely at 20% body function in the hospital, after a couple of months, I feel like I’m around 70%. My right hand has been numb for two straight months and I still sort of walk like a toddler.

I’ve been living with multiple sclerosis for just over five years. That’s how long it’s really been affecting me. Even before this trip to the hospital, I knew MS was slowly eating me alive, and by proxy, my apparently-scrumptious nervous system. I poured myself more into work and my Youtube show. Anything to keep my mind off how bad it was before I knew what bad even was. By the time I was discharged from the hospital, the closest any of the MRIs diagnosed this fresh hell was “complications due to flu-related auto immune failure” or whatever the hell they called it. It sounded like word salad then but now it just feels wholly … inadequate. It was a relapse. Leave it at that. Everything else is just empty-calorie science words.

Yesterday when I hit my head (I’m fine) I reached this headspace — the only way I can describe it is the space you enter when you have run out of frustration. Even if my body is at a pretty serviceable 70%, my balance isn’t. I haven’t stopped falling since I got home. The reality is: I’m the only person that knows how my recovery is going and, being brutally honest, it isn’t great. While I started out healing well, getting my voice back mostly to normal (minus some pretty noticeable slurred speech,) not getting my dominant hand back has been a pretty consistent trip to that space beyond the frustration. What I’m saying, is that even though some of my faculties have returned, my healing has slowed to a stop. It’s been two weeks with absolutely zero improvement.

For the first time in my life, it doesn’t feel like I’m gonna bounce back all the way from this one. If my current situation is any indication: not even close.

I’ve had a lot of time to make peace with this, but I think it’s important (and why I’m being so public with this) that all of you make peace with this as well. I move a lot less purposeful and slowly than I used to. It can be hard to understand what I’m saying, but if you had any idea how much effort just talking takes me just to sound somewhat normal… Oh, and there’s all the falling.

I relearned how to speak.

I relearned how to walk.

I relearned how to write

But it wasn’t enough.

I thought I’d make it a little further than 35 before I started losing faculties, but sometimes life doesn’t go the way you think. Shit, I don’t think any of my life has been expected, even if much of it has been welcome. Some of us just got dealt a shitty deck and I know a lot of you are going to reach out, and honestly, between you and me I don’t really want to talk or dwell on this at the moment. That’s why I’m posting it here. It is what it is and the only way to spread the information is to say it once and be done with it. It would be a cruel punishment to expect me to say much more than this today, especially once you make your way through the next part.

I’ve been concealing this to the best of my ability but I don’t think it’s in any of our interests to do that further. I’m not getting better this time and that’s okay. I mean, don’t get me wrong, this has been hard. This has been the most unrelenting two months of my life. And honestly, I’m just so tired, I want to put this road to recovery behind me. I’ve missed enough work. I’ve missed enough life.

I wish I had better news, but I’ve lived the last two months without some number of my normal body functions. I seem to have healed up as much as I’m going to.

To all the friends and family that were at the hospital or helping me once I got home, to Steph, Elyssa, Calvin, Aidan, Alice, Mike, Carol, Thaddeus, Rick, Sam, BT, Randy, Chris, Paul, Josh, Karen, Jeff, & Kris, or any of the number of people that have been helping me out during the most difficult period of my life: a heartfelt thank you.

To all my friends that have reached out privately, especially those whose messages I never got to: thank you for all the love.

It feels a little weird, truthfully it feels weird to have come this far and fought this hard and come up this short. It’s devastating, honestly, and this is really hard to write but I lived with this reality on my own for two weeks longer than it would appear that I needed to because I’m pretty clearly done healing.

So, I’m just a bit more broken than I used to be. I shouldn’t even be standing up, honestly — but I am, defiantly because fuck MS, fuck auto immune deficiencies, fuck whatever this fresh hell is, and fuck any disease that thinks it’s gonna keep me down.

I’ve been down for long enough.