It’s Sunday morning at 9:22 AM, and I have coffee, which I made without spilling grounds, and poured without spilling a drop, and pushed over to my spot on the couch without spilling on the floor or walker seat. One month ago, this would have been impossible, and truthfully, it’s the first day I have managed to accomplish all of these things together. It seems like such a small series of events, hardly worth discussing, but I’m hoping to put this into perspective by the end of this post.
As many of you know, I was struggling a bit recently. Between losing some ambition, particularly for the writing process, and feeling like a physical under-performer, and perceived setbacks in my treatment process, I didn’t feel like writing much. I felt like complaining, which I have worked incredibly hard to avoid, but refused myself that opportunity. I feel tremendous support from all of you every time I post here, but I won’t just come here to complain. That doesn’t mean you’re not getting the full spectrum of emotions from me…I just try to provide all of the different things (emotions, circumstances, my perspective, the perspective of others, etc.) that factor into whatever I’m writing about, and provide a positive spin. That’s where I live now. I refuse to look at my situation as a negative, but I experience negatives everyday. I felt like I needed to share with people, but I simply couldn’t put it on screen in a long (er) post, and avoid a negative energy, so I started a Facebook page to represent my day-to-day situations, and provide a (slightly) different point-of-view, in shorter, easier-to-write posts. If you’re on Facebook, and you’re interested in seeing these posts, like and follow my page, SickRick.Blog on Facebook. It can be searched by typing “@sickrickblog”, then click like, follow, or any other buttons that make you happy. Here are the first 5 posts from that page:
As you can see, It’s a quick, simple look into daily functions and events that I don’t always touch on here. It’s a different perspective.
Update: I’ve now typed 352 words, and only made 1 mistake (spelling, I’m sure there are other mistakes). It’s 9:58. I feel like a member of a 1950’s secretary pool in a bustling office in NYC!
After being told that my IVIG treatments would be pushed back due to insurance prior-authorization, I felt like it would eventually work itself out, and my dreams of Liquid Gold, and a quick recovery (or drastic improvement) were just around the corner. I was wrong. It still hasn’t been ruled out, but alternate treatments have been started, and based on recent gains and advancements in my personal condition, I’m confident we’re on the right path, even though it may be a slightly longer road. I make this conclusion based on a unique perspective: Mine. Everyone involved in my treatment, from doctors to family members, has to make an assessment based on visual cues, short questions with short, incomplete answers, and snapshots of those same things strung together to form an incomplete timeline, which is then used to determine my progress. My perspective, however, is incredibly different, based on intricate details, memories, and changes physically and mentally. I keep track of every stupid little thing I do…EVERYTHING.
This morning, for example, I woke up and immediately began thinking about writing this post, my semi-final qualifying fantasy football team “The Blueprint”, and what tasks I would perform as PT and OT options for the day. I eventually had to use the bathroom, so I sat up, stood up, and walked to the foot of the bed, where my upstairs walker gets parked every night. I tightened up my core, and walked to the bathroom (about 6-7 steps) without the walker. I did use the wall and the bathroom counter to make progress, but I did NOT use the walker. It was in no way pretty, but it felt like I had performed a huge task on my own, and while it wasn’t huge in the grand scheme of things, it was huge from my perspective. So much so that I left the walker in it’s bedroom parking stall, and walked from the bed to the end of the hallway without the walker as well. I gained some confidence, and made it work. I had to use the walls to stay straight, and my steps weren’t straight, or smooth, but they were being re-learned. Something I’ve become aware of, and accepted, is the fact that I won’t just get these skills back. My brain has to re-learn them, re-map them, and figure out how to access the map to these instructions all over again. Just like a baby learns to walk, so do I. Except it’s not just walking, it’s EVERY MOVEMENT I MAKE.
When I made it to the end of the hall, I had to move down the stairwell. I had to move my feet and legs down 13 stairs to get where I wanted to go. The process has been both feet touching every step while my left hand supports me on the handrail, and my right elbow keeps me from leaning or accelerating too quickly by propping itself along the wall. BUT, yesterday we had a second handrail installed on the right side, and I first used it yesterday. It takes me longer to get downstairs now, because I am teaching myself a new, more realistic method of getting down the stairs. Instead of both feet touching every step, I now make myself climb down the stairs like most everyone does. 1 step, 1 foot. Each foot touches every other step. It’s completely different. It requires different weight shifts, different knee angles, different everything. I have to learn this all over. I don’t care that it takes me longer, I know that a week from now it will be quicker, and a month from now, I may feel 100% confident doing it. It’s unsafe and ugly from the perspective of therapists, and even my wife, but from my unique perspective, it’s incredible progress. I’m healing, incredibly slowly, but healing none-the-less.
After making it downstairs, I used my downstairs walker, and as I mentioned in paragraph #1, I made, poured, and transported coffee with NO SPILLS for the first time since this all began. Those were my accomplishments and therapies I performed in 1 hour of my day. Now, I’ll add this blog post, my first in a little while. Well over 1,000 words in 1 1/2 hours, relatively mistake-free. That is, from my perspective, progress. If you came over to my house to watch the Packers, and The Blueprint, win today, you WOULD NOT think I am doing all that well, but you’d be wrong.
Mugs and T-shirts will be arriving next week, and I am going to make every effort to get them to you ASAP! Thanks again for purchases of SickRick swag, as well as donations to the Gofundme page! You’re amazing people.