Empowering Mobility: Help Me Secure a New Wheelchair!

TW: Medical trauma

As many of you may know, these last few years have been rough on my health. I have come to accept that I must rely on mobility aids like a cane or wheelchair for my safety. The wheelchair I have been using is one meant for someone to push you. This causes damage to my shoulders by manually pushing the chair myself. For these reasons, I am seeking a custom wheelchair to be made. I started this process in the summer of 2024 and just got to the point of being feasible insurance-wise. Sadly, due to being disabled, it is still beyond my price range, thus I am asking for help. The freedom that a wheelchair allows me is enough to integrate me back into real life and do the things I love. So why a wheelchair? How did I get to this point? Well, it certainly has been a rollercoaster. Several events have changed my life drastically to the point of my now being disabled.

The spiral began on October 9th, 2020. That was the day of my horse accident. I did not go to the ER for it; I now know I should have. The lasting effects might not have been so severe. I followed up with regular doctors later on, which delayed my care. This inevitably led to bilateral hip surgeries and nerve damage from the vertebrae's slippage. I had torn the ligaments in my hips, had a significant slip and minor fracture of L5 in my spine, tore my spinal fluid membrane, and some other soft tissue damage. Since then, it has been constant doctor visits, three surgeries, and endless physical therapy. I ended up getting a 360 spinal fusion of L4-S1 done in December 2024 in hopes of pain reduction. During the testing for that surgery, we found that I had severe peripheral neuropathy, which meant I would never get feeling back in my lower leg. We believe the cause of that to be the horse accident, pinching and killing the nerve over time. I am experiencing further nerve pain and am working with my medical team to alleviate it. Just recently, we have found that the neuropathy has gotten significantly worse because of the surgery. Instead of helping the pain, it kicked the hornet's nest. The only goal the surgery accomplished was stabilizing that portion of my spine.

About a year after that injury, I was in a car accident that left me concussed with a brain bleed. I did not go to the ER then either (I swear I have learned). This caused me to have a stroke soon after, thankfully minor, but I still have some lingering weakness of motor function on my right side. As you might also have heard, I also lost most of my memories from that accident, retrograde amnesia, so they call it. I had to relearn how to do everything again. I would sit in front of a mirror and pace and talk for hours until everything looked normal to the average person. I had struggles in school, I had to learn how to learn, and I couldn’t walk to classes without getting so sick from the pain that I often spent more time hugging the trash can than behind a desk. I had to withdraw for a semester to get back to a semblance of normalcy. I used that time to train my first service dog. It quickly became apparent to me how that little help would transform my life. I have since trained two more service dogs and have expanded the tasks from just PTSD assistance to full-on mobility assistance.

Service dogs gave me freedom in a rough patch I might not have had otherwise. After I graduated, I worked for a year as a wildlife researcher and in canine training. In December of 2023, i was raped. I took 3 days off work to recover physically. My employer deemed it too much time off and fired me. Due to the trauma I had endured, I was essentially in a catatonic state. I shut down and shut nearly everyone out for too long. By the time I recovered enough emotionally to return to work, my body had deteriorated quite a bit. My gracious grandparents were kind enough to loan me a spare wheelchair they had. I reluctantly tried it out on a trip to the zoo. For the first time in my short memory, I was symptomless. I was in no pain, not faint, and just got to enjoy my time without thought of how to walk to avoid the most pain. This experience had me wondering just how much of life I was missing. So, I went back into the onslaught of specialists to discover why I felt so different in my daily life than I had on that trip. After much research and multiple consultations, I got diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), arthritis (still unsure of the type; current theory is Ankylosing spondylitis), and an autoimmune disorder that causes daily allergic reactions.

-- POTS is a condition that affects my heart rate; it jumps due to positional changes or long periods of standing. Occasionally, the episodes would get so bad that they would result in passing out.

-- hEDS is a condition that affects all connective tissue in my body, so my joints are the primary affected part, leading to instability, dislocations, and subluxations.

Due to my inactivity as a response to the trauma, my body was more harshly affected than a normal body. My prior conditions worsened. The back pain was so severe that surgical intervention was necessary. Because of this, in combination with passing out, it is not safe for me to walk long distances anymore. Admittedly, this has been a very harsh reality to come to accept. My life is not the one I had hoped for, it never will be the way I had planned. I hope that with this wheelchair I can do some of the things I once enjoyed, even though it may look and feel different, it may even be better than before. My service dog has already immensely improved my quality of life, I can’t even imagine the adventures we would be able to do if I were able to take him out more.

I am very grateful to all the people who have helped me thus far, I truly could not have done it without y’all. Thank you for taking the time to read this and allowing me to share this small part of my story with you. This has been a rather difficult journey, from learning, healing, to even just writing this. I decided to go this route because it would mean a lot to me to have my freedom given back to me by those I love.

Thank you again!

Celeste K.