Updated: Jan 25, 2021
“What does your daily routine look like Jacob, if you can’t move or really do much?”
you might ask... Well, let me tell you. Each day, one of my four Patient Care Assistants arrives at 6 A.M. to start our day. Our daily ritual begins with my bed-bath... hum... bed-bath? Why do I bathe in the bed?
For starters, my loaner wheelchair doesn’t fit in the bathroom, but even if it did, I am
recovering from surgery and have been in casts for the last two months and unable to shower. So here we are, taking a “bath” in bed. This process requires that my PCAs wiggle a bed pad under my body and head to protect my mattress and linens. Next, they shave my face with an electric razor because my ataxia might result in a spontaneous spasm leading to another traumatic injury. We fill a small basin with hot water and use rags to scrub-a-dub-dub from head to knee... yes only to the knees because my whole foot situation is another task entirely. This whole process takes about an hour because the water needs to be frequently changed so that I don’t become hypothermic and I constantly need to pee... like literally every 10 minutes; stay hydrated my friends! Let’s just stop for a second to elaborate on the pee situation... it’s not what you think and it’s not as simple as just “going to pee”. I have to sit up in the bed, my PCA places a urinal in the proper position and because of my bladder shyness, she needs to leave the room while I pee. Once the deed is done, I summon her back to remove the bottle and dispose of it. And then we resume bathing. Oh, if you’re wondering about poop, just stay tuned for another episode of A Day In The Life Of Jacob Haendel. After I’m squeaky clean and we’ve put on my various lotions and medical potions, my PCA assists with boxers and pants and then we proceed. I do passive range of motion exercises and a stretching regime. I won’t bore you with the details of this, but it takes about another hour.
Next, I attempt to sit up and put my own shirt on! What an adventure this is! On
average, I can successfully complete this task in 5-7 minutes with many near self-strangulations. We are working on getting that down to 4 minutes.
Now I’m ready for The Chair! For anyone who has ever witnessed, assisted, or experienced a slide board transfer, you know as well as I do how difficult they can be. From getting my balls caught under the board, to my skin sticking, to the extreme wedgie I perpetually have, it’s a mess. Once I’ve safely landed in the chair (which really isn’t ideal in any way, shape, or form) I choke down some applesauce (which is the vehicle for my medication) brush my teeth and pack my backpack for the day. Let’s be clear, I don’t actually do any of these things myself; I sit and watch as my PCA achieves these tasks that I can't yet accomplish on my own. During all of this, my phone is usually ringing and my transportation is waiting outside and I only have 6 minutes to get my ass outside before they leave without me and I miss my appointments.
Once we’re in the transport van and headed to the hospital for my 3+, daily
appointments. Without going into too much detail, I receive OT, PT, LSVT, ATEC, brace clinic, and other random medical procedures or follow-ups. Are you tired yet? Yeah me too, but the day is just getting started.
By 2 P.M. when we return back to my apartment, my bladder is nearly bursting and I am starving. You might have noticed I didn’t write anything about breakfast... I don’t eat breakfast when I have appointments and that’s a strategic move on my end to avoid any kind of bowel movement while I’m out and about. I finally get some food in me, go to the gym, do my various homework from all my therapies, deal with paperwork, mail, and every other household task and by the time I even stop to think, it’s 6 P.M. I just orchestrate the whole thing and have help along the way, but I’m always exhausted.
From here, my PCAs have a shift change, I eat dinner, finish up my at-home therapy,
edit some videos, check my emails, voicemails, texts, confirm my transportation for the following day, and schedule for the following week and then quickly fall asleep. Usually, some kind of pain or medical situation wakes me up in the middle of the night, we work that out and then I fall back asleep until 6 A.M. when I wake up, and we rinse and repeat the whole day again...every single day.
And still, every day, I am grateful for the progress I've made, and for everyone along the way who has helped me get to this point.
Please check out my Go Fund Me page to learn more about my daily journey!