From hospitals to home. From in-patient to out-patient. Just when I thought I had it all figured out…
“To know, is to know that you know nothing.”
I’ve done a lot of stupid shit in my life, like clicking the “yes I’d like to receive special offers and updates” box, forget to pull the E-brake on my standard car so it rolled down a hill and got totaled, and order french onion soup without onions in it (you’d be surprised at how many restaurants actually accommodated). But, of all the stupid shit I’ve done, thinking I’d go home and everything would just go back to normal was probably the stupidest. Well, it’s a close call between that and the whole E-brake thing.
If you look closely, you can see my old car. Oops. Punch buggy black, no punch backs.
The hardest part about going home is how little understanding everyone else has about brain injuries and recovery. The shit people say in attempt to make you feel better is sweet but also equivalent to nails on a chalkboard. Also, there are a lot more mirrors at home, and I am still unable to look at myself without thinking “this is it, this is my 2007 Britney”. I think everyone (including myself) thought that going home was actually GOING HOME. I know that might not make sense to you, but it does to me. Add it to the list of shit people don’t understand about brain injuries. I was under the impression that once I went home, things would go back to “normal” and recovery would speed up… I was more wrong than Brad Pitt for breaking up with Jennifer Anniston (bad move Brad, bad move).
Still not over this or Brittany Murphy’s death TBH….
When I was in in-patient recovery, I was “missing everything” but when I was home I was “seeing what I was missing”. I could do everything, but I could do nothing the way I used to. The quality of everything changed with my ability to do everything. I was soooo happy to bust outta rehab, but my bitch ass almost cried when I left. I had just done the exact same thing, every single day, in the exact same place, with the exact same people, for a month. I had become accustomed to my routine, I felt safe. As excited as I was to have my *mic drop* moment leaving rehab, it didn’t quite go down like that. You know at the end of a movie when the music fades out, and the image gets smaller and smaller as the main character walks in to some sort of light? That’s what I thought my exit was going to be like. Spoiler Alert: That didn’t fucking happen. I was honestly more scared than I had been this entire journey. Not an exaggeration. I was more scared of the unexpected at home than I was for my head to get cut open.
This is how I pictured my exit from in-patient would go.
I was happy to sleep in a bed that doesn’t change pressures all night long to make sure I don’t get bed sores. I was going to three different therapies a day, 6 days a week... I sure as shit wasn’t getting any bed sores. Unfortunately, hospital beds are a one-size-fits-all kinda thing, and a lot of people probably need the alternating pressure mattress. If you’ve ever slept on one of these beds you know it’s harder to get a full nights sleep on them than it is when one of your nostrils is clogged.
I was happy to eat a home cooked meal, or attempt to. At the time, I couldn’t eat anything with a fork. For most, it is an eating utensil. For me, it was a dangerous weapon. I kept stabbing myself in the face every time I went to take a bite.
Unbeknownst to me, going home didn’t mean sleeping in my own bed with my fiancé and son, let alone under the same roof. It meant sleeping in a big bed alone to get used to sleeping in a bed without safety rails. It meant waking up in the middle of the night having to pee and not being able to just push a button for a nurse to come take me. It meant going back to bed until someone in the house woke up in the morning and could take me. It didn’t mean sitting around a table eating a nice home cooked meal. It meant sitting up on my bed wedge with a tray table (I can assure you- this is the furthest thing from the breakfast-in-bed-look you’re probably picturing). It meant falling out of the bed once or twice, or ten times, during the readjustment period.
I’m so lucky my mom is an RN so I was able to go home with her instead of back to our house, where I would need a 24/7 home aide. AKA a live-in stranger who doesn’t even babysit. AKA an intruder of the little privacy I had left. AKA a highly underpaid individual who probably doesn’t want to put up with my shit. Anyone taking you to the bathroom at 26 years old is awful and feels demoralizing, but having a stranger taking you to the bathroom is even worse. Same goes for showering. Of course, all my loved ones wanted to help, but when you’re that vulnerable, there’s only so many people you will actually allow to help you wash your entire body or wipe your ass (without wanting to just curl up and die). Truthfully. I know that might be TMI but... grow up, one day you or someone you love will be that old and you’ll have to do the same. Having my mom, aunts, and sisters to help with the “dirty work” didn’t make me feel that much better- I just imagine not having them would make me feel that much worse. Ultimately, every day I felt more exposed than Janet Jackson at the 2004 Superbowl.
I started out-patient almost immediately. It was so hard to find an out-patient rehab that wasn’t just for athletes with a shin splint (boo-fricken-hoo). I needed a neurological rehabilitation program that would target the attack on my vestibular system and cranial nerves. At in-patient, I was in such poor condition that my therapists were targeting how to help me sit up safely in my wheelchair and my ability to swallow whole foods safely. At out-patient, I was still in poor condition but was ready to get out of a wheelchair and target new shit. I was ready to have a conversation, not just a “hi bye see you later”. I was ready to ditch the wheelchair and get a walker with flames on it so I could name it Hot Rod. With the help of my A-team therapists, I have since went from being unable to stand up, to using a rollator (for those who don’t know, that is a step up from a walker - it’s like the Jeep of walkers - I can go off roading with it.. not to brag or anything). I went from being unable to say my sons name clearly to being able to read him a whole book. I also went from hardly being able to drink water from a straw to gulping from a glass of wine (prob one of my most rewarding milestones to date…. but who’s asking).
This sort of sums up my progression: My 4 year old sees me home in my bed and says “Yayy mommy you’re all better now! Are you all better now?” and I say “Yes I am, Kevin” and he says “Then why do you still talk like that?”. Nothing is more honest than a toddler, or yoga pants.
My mom, myself, and my son who is now the size of an NFL linebacker, nbd.
I am no longer a danger to myself, but I still do not recognize myself. I was able to be home and see my son on Easter, but I was not able to find eggs with him. I was able to go out to eat with my family on Mother’s day, but it had to be at a handicapped accessible place and probably took me 20mins to get in and I had to order something easy to eat. Although I can do things, the quality is not the same, and everyday I feel like I am rubbing in my own face the things I cannot do.
It’s hard to explain. It’s like my life is a giant tongue twister - I think something in my head such as a sentence or a walk or a jump, etc. and think about it so much that I perfect it in my head, but then I go to execute it and I’m like WTF was THAT. Example: you say “Sally Sells Seashells” 100 times in your head and it sounds perfect, but then when you go to say it, your tongue twists and something totally different comes out. That’s my life. It’s almost like my mind plays this trick on me - I think I can do something perfectly and then the rest of me is like “And none for Gretchen Weiners, bye”. I don’t know if any of this makes sense or makes someone understand any of this better but it’s one of the million analogies I have come up with trying to help people understand. Another one that I think comes close to giving this recovery process justice is that it’s like my entire house went on fire and I lost everything I own, but I lived. Truth is, I don’t think anyone can really understand no matter how bad they want to or how bad I want them to or how many bad analogies I come up with. I don’t even understand. Even my doctors and surgeons and therapists are all like WTF (my case is weirder than people who put raisins in meatballs). Nobody has any answers for me other than “time”. You know what I think of that answer now? *Insert middle finger emoji*
Long long long story short, I am home, but I still miss my life. I have been home a little over two months now, and although I can now sit up on my own and retired from the wheelchair, I am still unable to walk unassisted. Although I have regained the ability to read a children’s book out loud, I still have yet to speak with a voice I recognize. I can now use the bathroom on my own, shower on my own, and even get up and get my son ready for school on my own. I can fold laundry, get myself dressed, attempt to do my own hair. I can now sleep in the same bed as my fiancé and/or son without being scared of falling off. I can go up and down stairs, go on walks with my family, and use public restrooms (not that that was ever a goal for me, but it is certainly an accomplishment and step towards independence because that shit was hard). This stuff might all sound easy but that’s because it’s all things we take for granted. I am still unable to use my eyes together, I am still unable to smile (I got 6th and 7th nerve palsies from the injury to my nerves during surgery. Apparently, nerves regenerate slower than it takes the inside of a Pizza Bite to cool down). I am still unable to work or drive, or do a lot of the things I want to do, but luckily I am finally able to do most of the things I need to do. I have so far to go (as my brutally honest 4 year old likes to remind me), but I have come so far.
My talents include…
Anyways… today sucked so I just needed to vent but thanks for reading. I know I haven’t written in a while but I’ve been trying to get out more and exercise rather than drown myself in my sorrows - and by sorrows, I mean food. I’ve been drowning myself in food.