For those who are struggling more than the other posts I see
I wasn't planning on making a post, but I feel like I want to say to the ppl who aren't doing good that I feel you. I see a lot of posts about different struggles, and every struggle is valid. Regardless of where you are on the recovery journey, whether it's new or old.
The things I read here, are from ppl that have substantially overcome their physical journey. They are working, in relationships, travelling. I don't see posts of anyone who is near the level that I'm at.
I fell off an escooter (going slowly up the sidewalk ramp from the road, no helmet) and had brain surgery (brain bleed/hemorrhage). I had a seizure (I have mild epilepsy) and a stroke. I've ridden those escooters for yrs, I was experienced. I was 35, this was 2023. I spent 3.5 months in the hospital, then went to the brain injury rehab unit for almost 16 months. Had a trach tube. I was non verbal for months. I don't even remember the accident, or the next 2 months. Adult diapers for months. Couldn't move my affected side arm/leg/foot. Could only open my eye halfway on the affected side. Had a feeding tube surgically inserted in my stomach.
Went to the rehab unit. I was wheelchair bound for months. I was diagnosed with pseudobulbar affect, it's random laughing or crying with no emotion behind it. My speech therapist got me to the point of talking again, I have dysarthria. Basically the muscles used to speak aren't working. I learned how to eat/drink again and I got my feeding tube pulled out. I went from blended food, to pureed, to diced, then finally I could chew on my own. I had to learn how to write again, even though I'm right handed and that's not my affected side. I couldn't shower on my own, I was showered by staff. I had to get a catheter inserted a few times a day and in the night, couldn't pee on my own. I don't really know the details of that, but it was like my body didn't know it had to pee. I couldn't lift my affected leg up to do any walking, physio had to be behind me and beside me to lift my foot to take a step. I had to wear a slider on my foot so I could glide it when I couldn't lift it. A slider is what someone wears if they are curling, and it's smooth so it allows your foot to glide smoothly across the ice. Eventually I got rid of that and I made it to a walker, once I could work both of my hands. The pseudobulbar affect (PBA: laughing randomly) made it difficult to do my programs and to be in a social setting with the other patients or to be with staff. The meds they put me on for the PBA made me so constipated. And I was stuck eating the shitty unit food, I gained almost 15lbs there. I was a really healthy person before. Then I got to a point where I could shower on my own. I went from a room with another patient to my own separate room finally. I was able to go to the bathroom on my own. For months I had to go to the bathroom strapped in that chair machine that stands you up. Can't remember the name of it. And after you go to the bathroom you press the call button and they come stand you up and wipe for you. I got an AFO for my foot and I needed regular botox in my leg/calf muscles. The spasticity makes my foot turn inward and the heel doesn't touch the ground. I still get regular botox, I'm on a list to get surgery to lengthen the tendons of some muscles. I got a palate lift retainer to help with my speech and stop the air from exiting my nose when I talk. Then physio started to walk with me and a quad cane. It's a 4 prong cane that keeps you stable. I had to wear a gym glove to hold my cane, cause my hand would get so sweaty. I still currently need a glove if I'm doing cane practice.
My story has so many details. I was so sick of living with other patients/staff. My only goal was to make it back to my condo, living alone again. It's been 3.5yrs. I can only walk maybe 7 steps without my hands on something. I walk crooked and very slowly. I just got to the point where I can lift my affected arm all the way upright. My mom came to live with me for a couple months and then could see I was good on my own. I can now change my own bedsheets, I do my own cooking and can use the oven for baking. I can vacuum, with my cane in one hand. I go to the gym on my own, it's a fitness facility made for ppl with disabilities. I never drove before my injury, I now book rides with the accessibility public transit service. I do my own laundry, shower with my shower bench on my own. I have to constantly speak outloud to myself to keep improving my speech, it's far below sounding normal. I am always giving myself praise and say that I am making progress, even if I don't believe it at the time. I've had a couple falls, it's been quite a while since that happened though. I'm not working, I'm on disability income. I'm 3.5 years celibate now, I don't even know if I'm still a good kisser. I was single when the injury happened. I can't even imagine dating, needing to conversate so much with my shitty speech. I have no sex drive anymore, and I've always been very independent so I'm still happy being single. I have to lay down on my bed to put my hair in a high pony. Doing two braids is already a shldr workout. I remember practicing putting makeup on in the brain injury unit with my rec therapist. I rarely wear makeup now, it's a whole event to put it on, but I learned how to do it well. I was very devoted to exercising in the unit, I needed to live alone and be successful at being alone.
The muscle growth after the TBI/stroke is soooo incredibly slow. 3 yrs to be able to reach all the way up, no weight in my hand. There are ppl who were patients at the same time as me and some still can't use their affected arm. Some are still in wheelchairs. Lots are in assisted living. I stayed very determined to get better. Fortunately, my body & nervous system allowed that to happen. I was a gym rat pre injury, so I spend a lot of time doing exercises. Either on the floor mat in my room, or at the gym.
I just want everyone who is still far beyond leading a normal life after their TBI, to know that I fuckin hear you to my core. I haven't lived a happy life since my injury. I have happy moments with my friends/family, who I absolutely love to death. I am just existing here. I have no choice but to keep going. I have to be the one that went from 'I don't think she'll live alone', to then being the one who says 'well just fucking watch me get to that point'.
YouTube : AHS Scooter accident, to see my interview that I did after I'd been in the brain injury unit for 11 months