After being admitted at Brook Army Medical Center, every morning for the first couple weeks I was greeted by a group of doctors in varied specialties who each had their own questions and tests. I was put in quarantine because they hadn't yet ruled out polio as a diagnosis. They had already ruled out west Nile virus, Lyme disease, stroke, and many other things. So, on top of being in the hospital a thousand miles from home, I was in isolation. The only thing that saved me during those weeks of quarantine was the two nurses who would put the protective gear on several times a day, not only to check my vitals, sometimes just to come in and talk, they’d share hospital gossip with me, I'm so thankful for them, they kept me hopeful in a very dark time.
I had to cope with a lot of challenges on my own. It was lonely and in some ways quite degrading. I went from being a fully independent woman, to being bathed with a sponge while I lay helpless in bed, using a bed pan and catheter, getting UTIs because I wasn't being cleaned properly. I relied on nurses to come in and help me resituate my body in bed. I got injections of all sorts several times a day, the blood thinner was the worst, always in my lower stomach and always more painful than I expected. I had two spinal taps within 4 weeks, the first wasn't bad, but the second was excruciating. I had to have a femoral IV inserted at some point. I endured several Plasmapheresis sessions, where they separated my plasma from my blood to remove toxins from my blood. I had a bad reaction during the last session where I experienced a severe drop in body temperature and full body shivers for close to an hour. The doctors still had no idea what was going on with me, so more tests followed. Several times they stuck needles into my skin to see if my nerves reacted to being stimulated, they never did. Eventually they tried physical therapy, tried to get me to transfer into the chair next to my bed, I couldn't put weight on my legs without them buckling beneath me, so they would physically lift me and place me in the chair, sitting in the chair was always short lived as i would get incredibly light headed and nauseous. Toward the end of my stay at BAMC, my doctors told me I would likely never walk again…
The bed that became mine for my stay at the VA hospital.
One of the first things I did upon arriving at the VA hospital was to have my nurses wheel me outside to feel the sun on my face.
Around October 20th after they settled on the diagnosis of Acute Flaccid Myelitis, I was transferred to the VA hospital in Texas where I would spend the next 7 months. This stay came with an abundance of tests as well, along with physical, occupational, and recreational therapy. The nurses at the hospital quickly became friends, and would hangout in my room to keep me company. It helped a lot, but I missed home and my pets. I had a few visitors while I was at the VA, friends from AIT, my first sergeant, my friend who lived in Austin, my dad, and my aunt, but for the most part I spent this time alone in the hospital as well. I spoke to my best friend on a daily basis, I don't think she knew that she saved my life on many occasions with those phone calls. Between the loneliness and the lack of improvement in my condition, there were several times I quietly contemplated taking my life in that hospital.
In the first month at the VA, I started to get feeling back in my legs. It presented new challenges, i had constant nerve pain in my legs, it felt like knives stabbing me in the legs 24/7, PT made it worse, and i had it twice a day. During PT, they would put me in a machine that held me in a standing position. The nerve pain was so severe that my blood pressure dropped and I nearly fainted every time. I still couldn't sit up on my own without support, my balance was still so bad. I was still being bathed by nurses, but now at least it wasn't sponge baths, they would put me in a shower bed and wheel me into a shower, I still couldn't take care of myself in many ways. But I did get a fancy wheelchair around this time, I gained a little of my independence back with it, rolling around the hospital, buying junk food from the shop at the entrance and sitting outside to eat it became a daily routine.
Eventually the nerve pain eased up and I began learning how to walk again, it was slow and quite painful. It also required 80% of my body weight to be offloaded with the use of a ceiling lift. I could only take a couple steps before I was lightheaded and fatigued. My physical therapist kicked my ass, but she never gave up on me, even on the days I had given up on myself, day after day she tried new exercises, new techniques, and slowly but surely, existing became easier, getting out of bed on my own became doable, though i was still in a wheel chair i regained my independence completely. I was able to shower on my own using a shower chair, I was dressing myself again, I was even walking short distances using a walker. I was still defeated most days, because things that used to be so easy became a daunting task. Though I could do these things on my own, they tired me out faster than they used to, getting out of bed left me out of breath and sore, dressing myself was a whole thing every morning, sometimes ending in frustration and tears as I called the nurse to help me get untangled from my shirt. My new normal was exhausting, it was painful, and it was beyond infuriating every step of the way.
I was beyond ready to come home before they ever allowed me to, it became another huge part of my frustration. The Army took their time releasing me, even told me at one point that they would just be transferring me back to med hold on a base closer to home, Fort Campbell, which was still approximately 5 hours from where I lived. I had already been away from home, my pets, my friends, and family since March 3rd. Thankfully I had a team of people back home who were caring for my apartment and pets, but it didn't change the fact that I desperately wanted to go back. There was a lot of paperwork and phone calls, and people telling me that there was no way I could go home in my condition, that I wouldn't be able to care for myself properly. if I recall correctly, what finally convinced them to let me go back while they decided if they were keeping me in the service or not (yes, they were trying to keep me in the Army) was my case worker arguing that it would be better for my mental health and recovery if I were close to my support system. The hospital was ready to release me a month before the Army let me go home.
I thought coming home would mean that my troubled would disappear, but even that came with hardships. The journey back home was rough, it was close to a 16-hour drive, with my father who didn't quite know how to interact with his newly disabled daughter. When we stopped to sleep for the night, I had my first run in with a very inaccessible hotel room, my wheelchair wouldn't fit through most of the doorways, and my father was reluctant to ask to switch to a disability friendly room. The drive was long, and boring, but i found myself feeling excited to see my cats at the end of it. when I got home, I desperately tried to do as much on my own as possible, even though the apartment I lived in was not suitable for a wheelchair user and made things nearly impossible. I had several bad falls in the first couple weeks, bruised my legs and ribs pretty bad in one of them. I struggled to reach out to people for help, because I had just spent 9 months in a hospital, forced to let other people do everything for me, I forced myself to be independent. I hated myself back then, I hated the shell of a person I had become. I blamed my disability on myself for a really long time, and I hated anyone who asked me about it. I was incredibly angry at life. Sometimes those feelings resurface, but I cope with them easier these days.
I have wanted to share the experience I went through in detail for quite some time, but I never had the strength to talk about it until now. This time of year, is usually pretty hard for me, all of these vivid memories come back, and the feelings of helplessness come with them. This is the first year that September hasn't sent me into a full-blown depressive spiral.
So, if you have read through all of this, thank you from the bottom of my heart for taking the time to do so. Please know that I'm doing okay these days, and I'm very happy to be alive. I do still struggle from time to time, but I'm going to keep living, I promise. A huge thank you to the friends who have been there every step of the way these last few years, you know who you are, I love you and I wouldn't have made it through this without you all.
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