something i really appreciate that my school does is have opportunities and activities for us to experience a patient’s lived experience. this semester we’re learning about all things neuro-related…stroke, TBI, SCI, GBS, etc. and man it is a lot. not just knowledge and science wise but the impairments and deficits for each stretch wide and far and the sudden loss of independence is quite frankly terrifying. i can’t even begin to imagine what life would be like if i suddenly lost a good chunk of my function to where i’m no longer independent in things i once was at.
as part of our “lived experiences”, we had to sign up for a day where we would be in a wheelchair the entire day. my day came and in the 3 minutes that i had to roll myself from one side of the building to my classroom, i was already sweating and my shoulders started to hurt. i couldn’t believe that i had to be in a wheelchair for the next 8 hours.
i found myself constantly shifting around in my wheelchair all throughout class – i was so incredibly uncomfortable. my lower back was hurting, my hips were tight, and i couldn’t feel my toes because i wasn’t getting adequate blood flow to my feet.
we had to get accomplish some tasks during our day as well like go to CVS to “buy” things and go to the gym for a quick workout. opening doors was not as difficult as i thought it was going to be but still not the easiest thing either. i learned quickly that i had to make wide turns in order to completely clear the doorway and that my school is not handicap-accessible whatsoever which made things so difficult.
honestly the hardest thing was braking. going downhill was great because i didn’t have to use my shoulders but i had to use my hands to brake or slow down so i wouldn’t crash into something or get hit by a car (which almost happened btw…) and tbh braking sucked. my hands hurt and i thought i was going to get a blister or a burn and i can see now why wheelchair users have gloves. i had to really control the speed at which i was going downhill otherwise i think i would’ve gotten seriously injured. getting stuff at CVS and the actual workout in the gym weren’t that bad – it was just getting to and from those places that were terrible because the ramps were SO far away and way too steep to roll up as well. the sidewalk near my school also isn’t wide enough for a wheelchair so i had to wheel myself on the street which is so unsafe.
not only were my shoulders on FIRE but my back was sweaty along with my thighs and butt. again, i was so incredibly uncomfortable. i was able to heat up my lunch and i tried to limit the amount of trips i had to make in my wheelchair as i was getting really tired. even though i used proper wheelchair techniques to save energy, i was still exhausted from all the moving i had to.
i eventually went to the bathroom and i was able to get my wheelchair into the stall but there wasn’t enough space to actually transfer from the wheelchair to the toilet and getting out of the stall was just as difficult too – i almost got stuck. the doorway to the sinks was almost too narrow for the wheelchair to get through but i managed to get through it. i thought i was going to get stuck as well but luckily i didn’t.
i went to my next class and it was hard to see my classmates because the desks were too high but i was still able to reach the table – it just wasn’t comfortable to hang out in there. with one hour left in class i felt myself getting really agitated and delirious. i wanted to get out of the wheelchair and to stretch my hips and back – i wanted to stand. i only had to be in the wheelchair for 8 hours and as i was waiting for the minutes to pass for when i could finally get out of the chair, i couldn’t imagine being in a wheelchair for the rest of my life like some individuals who do. i couldn’t even begin to imagine how they would feel not just being in a wheelchair for hours but for a lifetime…i can see why they would have psychosocial issues because i downright felt like i was going mad. i felt trapped and i wanted out.
one thing i’ve learned/gotten out of this is i have mad respect for anyone who ever has to use a wheelchair because it is no joke. it was one of the most uncomfortable 8hours of my life and i have nothing but mad freaking respect for wheelchair users.
a loud whisper of thoughts 