she’s in her *~healing girl*~ era

The past 20 months (wow how has it been this long) have been some of the best and some of the worst days of my 27 years. I will forever say that “no one ever prepares you for a spinal cord injury” because no matter how much you have studied and researched the neurological system of the body, no two injuries look alike. For example, take my injury and another girl that I know –. although we both have incomplete C6 incomplete spinal cord injuries, I can move my legs and have some loss of sensation below my armpits, however she is still a paraplegic, but can feel sensation (minus temperature) in her legs. SCI’s are wild and unpredictable. Some people return to the same activities that they were doing before without assistance/ aids and some succumb to their injuries. I am so fortunate and grateful to have gotten back what I have gotten back while continuing to grow stronger!

I haven’t given an update since August 2022, so I apologize for the huge gap in time but better late than never! Since my last update, from July-October I had a consistent bladder infection which caused me extreme weakness and fatigue in my muscles. I would finish an antibiotic and a few days later my symptoms would continue. Get labs done, start the antibiotic, and repeat the cycle again. At the same time, I also ran out of PT/OT visits with insurance, which hindered my strength to battle the infections. We had done 3 appeals with insurance to try to get more visits due to medical necessity, but it was denied every time. Due to the setbacks, I lost a lot of muscle strength AND sprained my ankle (...again).

Luckily, I was able to get back into PT in December and have been doing PT at least twice a week since January. I have made incredible improvements on my core, leg strength, and lower extremity movement since! Then, in February I ended up having blood pressure issues and another UTI which put me down for a few weeks from being nauseated, tired, and having a relentless migraine. It was the worst I had ever felt since my accident and had to call out of work and cancel so many plans from being sick. After a few days of tracking my blood pressure and a course of antibiotics, I was able to stop taking the medication that caused my BP to rise and went back on track to getting my strength back. Healthwise- I feel like I am finally the strongest and healthiest I have been post-accident and am excited to see my progress this year!

Despite my trials and accomplishments with my physical health I still feel maintaining my mental health has been the most difficult. I have a friend with an SCI and we often talk about how this injury is way more taxing on your mental health instead of physical health. As some know and some may not, I spent the whole first year post-accident in denial that its t had happened and that I was now confined to a wheelchair/assistive device. I didn’t want my new injury to alter my life like it had and just wanted my pre-accident life back. I refused to cry because I didn’t want to seem weak and I knew if I did cry, it would be a while for me to stop. On the 1-year anniversary of my accident, I finally accepted what happened to me and decided to move forward, instead of trying to keep together “pre-accident Al.” It took me until recently to feel comfortable being alone and “slowed down.” If you knew me pre-accident, you know that I was constantly on the go, from working 50+ hour weeks to maintaining my social calendar.

When I first came home from the hospital I couldn’t drive, making it difficult to make plans with people as I had moved back to my parent’s house in Sumner County (about 15-20 mins away from downtown Nashville). Trying to line my plans up with my parents plans so I could even get down to Nashville to see people was horrible. I was lucky to have some friends who were so gracious to visit me at my parent’s or who opted to pick me up/ drop me off at home. In addition to transportation/geographical constraints, I also had scheduled medication 4-5 times a day, which required me to be home at a certain time due to the side effects.

I felt isolated and alone a lot because it got too difficult to make plans to go out and I didn’t want to burden my friends with having to help me. Additionally, because I felt like it was so difficult to make plans, I stopped asking people to hang out so much. Even when I was able to drive myself, I felt bad asking for help from friends when I needed it. I was physically exhausted from trying to walk, get out my wheelchair from the back of the car, putting in my assistive device, pushing/ rolling me, etc. With me being so physically and mentally exhausted from everything, I became comfortable in the silence and being alone with myself.

I struggled for way over a year to convince myself to get out of bed and do something other than wanting to lay in bed and watch TV/ movies and dissociate. I also had an increase in my anxiety in relation to social situations. Being invited to something and having to figure out if I could go based on if they had the right accommodations is something I never had to think about. That mixed in with my anxiety about being in crowds, whether it was people I knew or not kept me from going out.

I still am self-conscious about using assistive devices/ being in a wheelchair. There is absolutely no reason for me to feel this way, but I think that I am uncomfortable with it because I feel like being in a wheelchair draws unwanted pitiful attention towards me from others, which I hate. I struggled with staying positive last year but thank God for the people in my life who have been cheering me on!! So grateful for all of you!!:)

As for the real update on my physical health, I recently got the opportunity to be a participant of Healing Innovation’s Neuro Gym for their Rise & Walk machine that they developed. I just finished the 6-week program and gained strength and mobility in my legs. I am SO grateful that I was asked to be in their NeuroGym and had so much fun with the team. Additionally, I am getting a new leg brace (Knee Ankle Foot Orthotic) that will go up to my thigh and will help me walk/ stand for longer distances and time. With this additional support, my doctors think I might be able to walk without a walker - so fingers crossed on that! It will be a huge adjustment to have, but I am hoping that it is helpful in the ways it is supposed to be and easy to learn how to use!

As for my current ability status, I still am in a wheelchair for the most part and use a rollator or walker for shorter distances. I struggle to walk/ stand for long durations and am more self-compassionate in regard to how tired I am. I still don’t have movement in my right ankle and they anticipate that I won’t get it back but I am hopeful for the future. I continuously remind myself that medicine and science is constantly evolving, and they find new discoveries daily.

All this to say that I am in my (self-proclaimed) *~healing girl*~ era. As Ms. Swift says, “The old Taylor can’t come to the phone right now, why? because she’s dead,” except I’m not dead, I have just grown and learned. I am going to do my best to give updates more often (I know I have said this every time I’ve posted but I am REALLY going to try!!!) Thank you all for your continued support!!