2 years!!!

October 2nd was my 2 year anniversary from when I fell and fractured my C6 vertebrae, resulting in me being paralyzed from the waist down and having to relearn how to walk at age 25. It doesn’t feel like it’s been 2 years at all though. If you were to ask me how long ago it was since my accident, I would say that it feels like it’s just been over a year. I don’t know if that makes it better or worse that time has flown by for the past two years, but looking back to where I was a year ago, this past year has had so many accomplishments and milestones in my recovery that I am so grateful for.

This time last year, I was fighting an infection that took almost 6 months to go away, ran out of PT/OT visits from insurance, and was struggling a lot mentally with depression and anxiety. Safe to say I was not in good health overall. I was losing weight and muscle mass related to the infection that made me weak and not being able to go to physical therapy. I was angry with myself that I had not made the progress that I had I hoped for and had lost a lot of my support system that I felt that I had coming home from the hospitals. Work was stressful (simply just the job I had at the time) and I was coming home mentally and physically drained from the day. In short, I was down bad.

However, in November I moved from the adult treatment side of Crisis that I had worked in for the past 3 years prior and accepted a full-time position as a kid’s crisis counselor. Although I had been a PRN crisis counselor for 2 years prior, my professional work with children was close to non-existent. I always said that I would never work with children in my profession, mostly due to parents, but I knew that I needed to get out of my current role. I am now coming up on a year as a kid’s crisis counselor and I absolutely love what I do. When I first started with kids crisis I was traveling throughout Davidson County to schools, hospitals, and various other places in the community, but as of September, I am now working as an embedded kid’s mobile crisis counselor at Vanderbilt Children’s Hospital. Although I have missed going out to the schools and doing community calls, my shoulders thank me for not having to take my wheelchair in and out of my car like I was, typically at least 2-3 times a day. The schedule has taken some getting used to as I was doing 3- 12 hour shifts a week and am now working 4- 10 hour shifts with a later end time but so far it is going well!

In December of 2022, I had started doing physical therapy at another place where we could private pay to get the services. At the end of January I started back at Vanderbilt for PT as insurance visits were replenished with the new year. When I started back, my PT and I worked together to go over additional equipment to help me with ambulating better, both via wheelchair and walking. The first thing that was recommended was a portable motor that I could attach to my manual wheelchair to assist with traveling longer distances, like through schools and hospitals. I posted some pics of what the motor looks like/ how it attaches for reference:)

Luckily, I was coming up to my 1 year with my wheelchair (I had a loaner from the rehab hospital for a few months after I got home) which meant that I could get some repairs in addition to my new fancy motor. I had my wheelchair evaluation on March 1st to go over repairs, upgrades, and to test to make sure I am able to control the wheelchair with the motor. It wasn’t until the end of May that the parts for my wheelchair finally came in and I had my last practice test, which I passed (somehow). It took a few weeks to get everything situated with the motor and I had to do a lot of practice in PT to get used to it. I can say that this motor is amazing and absolutely has made it so much easier to get around places, especially if there are hills or a long distance that needs to be covered. Prior to the motor, I relied on other people to help push me around when needed so my friends/ coworkers also love it! The motor also allows me to be able to walk Dom through the neighborhood in the mornings, so he obviously approves too:)

The second recommendation from my PT was to upgrade my AFO (ankle foot orthotic) to a KAFO (knee, ankle, foot orthotic). At this time I had been having difficulties walking and standing, more than before, due to my knee giving out. I got fitted for my KAFO in mid April but there is only one company that makes the KAFO I needed, so I didn’t get the brace until August. When I first got it I hated it. The hinges at the knee (see pic below:)) locked when I straightened my leg and I had expected that if I was walking I would still be able to bend my knee. I figured that with the knee being locked it would make it more difficult to walk unassisted, which has always been a goal of mine. However, once I used it in PT for the first time I realized that the knee being locked out was SO helpful. I was able to walk farther with fewer breaks and I am not as fatigued as I was before. It makes me so much more stable while loading and unloading my wheelchair, as I have fallen before trying to do that, and allows me to stand for longer periods of time. The KAFO definitely has been the most helpful and game changing “equipment” that I have in regard to my mobility and walking. We do a 6-minute walking test to measure progress in PT and at the end of January this year (pre-test) I walked 107.5 ft with multiple seated breaks due to fatigue. I was actually retested on my 2 year anniversary and I was able to walk 262 ft in 6 minutes and I took no seated breaks!

There have been a lot of challenging parts of this injury, but the most challenging part has been the “unknown.” A lot of physical issues with this injury typically don’t have a rhyme or reason as to why they happen and the answer I usually get is just that I have a spinal cord injury and that's a part of it. Although overall I have been a lot healthier/ less sick as before, this year I have been struggling with autonomic dysreflexia, aka AD. AD is basically the fancy term that means my body cannot self-regulate itself, due to the SCI, and can be triggered by many different things. Over the summer my trigger was the heat and because I can only sweat on my neck, I wasn’t able to control my body temp, often sending me into AD. My symptoms with AD typically are a headache, high blood pressure, and vomiting. I bought a handheld, portable fan and cooling towels because I was having a lot of my episodes at work from being out in the heat on calls in the community. I still do get my AD episodes, despite working only inside now, but recently the triggers have been very random and inconsistent. Eating healthy, making sure I am hydrated, and getting enough sleep has been hard because I am typically busy at work and forget to eat/ hydrate, but I have been working to be better about that!

Once again I just want to thank everyone for their love and support you've shown me and my family for the past 2 years. I have no idea what the next year will look like but I am excited for it!

Ily

• Al