Adjusting On the Tightrope
Since my eating at this time had gone down a lot, I was up moving around a lot more and was able to do activities during the day.
I was still using the wheelchair and I had gone out with my dad one day to go to Target. On our way back home, we walked through the park, and I rolled on the street parallel to my college campus.
I had a really tough time because I realized through everything how much I care about how I present myself. Basically, I care about presenting myself in a certain manner publicly and my illness wasn’t allowing me to. I always had my glasses on since procedures and me sleeping all the time meant I couldn’t have my contacts in. I was wearing sweatpants because my stomach was so swollen, I didn’t fit into any of my clothes. I wore loose t-shirts because my stomach was super sensitive to anything touching it. My hair was always pulled back in a ponytail since I couldn’t shower as often and would vomit a lot and needed it out of my face.
That day, I had rolled by someone I knew on campus. I waved at them, but they didn’t recognize me and kept walking past. It was a hard reality that they didn’t recognize me. I did cry after this incident but in the long run it helped me adjust to the fact that I wasn’t the same person that I was before.
For the next few months, I struggled a lot and was frustrated that I wasn’t the old me since I had lost so much of what made my identity. I had begun seeing a therapist a couple weeks prior to help me find out who I was now and how I could deal with that new reality.
My roommate at the time also let me know that they were moving states to transfer to another college. This then allowed me to have a new activity that brought me lots of joy among the days in bed. I built 3D interior design models of what a potential apartment designs could look like for me on my own.
I had never decorated a space for myself since I never knew what I liked, so the time I spent finding out what I wanted the interior to look like, I began starting to rebuild the pieces of my identity.
I spent most days for the next 5 months working on the design.
My dad and I started brainstorming how this was going to work in the more literal sense because we would need to go apartment hunting soon to get ideas before my lease ended in the spring.
A lot more went into apartment hunting this time around since we had to think about all of these things we didn’t need to before. The place has to not have stairs in the entrance and needs to have an elevator for the wheelchair and for stretchers to get in and get me. Is it safe area for me to be living alone in? It has to have laundry in unit since I won’t be able to travel far and get to certain places. Needs to be near a hospital with how frequently I visit there, etc.
My dad and I notated these things and kept it in the back of our minds for when we would start looking later in January.
I enjoyed being able to have more energy and think about these things and was excited to be walking around more in the house without the wheelchair.
In the past my dad and I had many conversations about what my career would look like if I was stuck in the wheelchair, and we had planned out how every avenue would work in case the path steered in any of those directions. It helped me cope a lot to face the reality of everything and keep venturing further to see how life would be down those paths. I’d cry a lot, but it helped to address the scary things when they came so I already knew what to do if they happened instead of keeping it in the back of my mind eating away at me.
Rebuilding myself after being left with very little pieces was the most challenging thing I’ve ever had to do. I had rebuilt myself after the Texas flares, but I had not nearly lost so much of myself as I did this year.
I’m proud to look back and see how far I’ve come but this story is to show a glimpse of the reality of how difficult it is.
In the next story titled, “Which Came First, The Chicken or The Egg?” you can read about the result that left the largest debate in my care to this day.