Many people have childhood memories consisting of moments of achievement and happiness. My childhood memories are clouded with illnesses and hospital visits. By the time I reached the end of my teenage years, I had such a crippling curvature of the spine that I was told I would be confined to a wheelchair for the remainder of my life. Living with a diagnosis of Scheuermann’s Disease, I had no choice but to undergo a dramatic spinal reconstruction. The surgery was a success, however, I suddenly began to regularly experience non-epileptic pseudo-seizures. These sometimes resulted in a sudden loss of sensation and movement in my legs. One night, after suffering from a 3-hour seizure, my partner helped me into my bed with the hope that I would regain the ability to walk in the morning. This was the beginning of my journey with Functional Neurological Disorder (FND). When I was first diagnosed with FND I was overwhelmed and under-informed. What’s that? What does it mean for me?
Living in a remote-ish area, there were not many specialists who really knew enough about FND. I went from hospital to rehab, from rehab back to specialists, and each told me a different story. I had rehab in hospital for 3-4 weeks, until my friend could build me an access ramp to get in to my home and I was discharged in a ‘transit’ wheelchair, still with no feeling or movement in my legs. I was at my lowest point. I still didn’t understand what FND was or even why I had gone from walking to suddenly being effectively ‘paralysed’ from the thigh-down, with no reasonable explanation. After close to 4 months in another rehabilitation hospital, I was told I had plateaued and there was nothing more that this service could provide for me. I was shattered and felt completely defeated. I missed a lot of things like standing up to cuddle my partner, walking my best mate AKA ‘Charlie the wonder dog’ or simply taking a shower standing up. My relationship was feeling the strain and the things that I could do independently before, now became the responsibility of my partner, Amy. But that did not stop me from trying. Having had our home modified with a temporary ramp, I could now access the garden. I shovelled, pruned and turned over the soil in our garden beds….and I did it all on my knees.
Gardening was my solace. It provided me with an outlet that made me feel somewhat normal. But every specialist told me I was abnormal. “These test results tell me that you should be walking.” We became so frustrated with the constant dead-ends and the lack of information or support, that we were at breaking point.
Amy did some more research to try and get some assistance and came up with a list of places spread all over Australia. Reluctant to travel interstate for treatment, we finally made contact with Advance Rehab Centre (ARC) – a ‘short’ 90 minute drive. The next week I finally gained my modified driving licence after passing a test to say I could drive with my hands…yep, that’s right, with my hands! I have a cool satellite accelerator system, which to me represents FREEDOM. The first time going to ARC, my sister drove me there. I was so nervous I had an anxiety attack in the car. During my consultation I became totally overwhelmed and I balled my eyes out like a baby. But these were tears of relief. There was hope. I was instantly reassured that within time, my goals were achievable. I realised I had nothing to feel anxious about and I was going to be in good hands. Anna was able to answer all my questions and I had nothing to lose. For once I felt heard, understood, and was given guidance. I was so chuffed with this that I just couldn’t wait to tell Amy all about it.
I don’t know if I was over eager or a glutton for punishment, but I started with an intense program. I am so glad that I did. I quickly went from not being able to bear weight at all to bearing weight with assistance.
2 weeks into my intensive program came a moment I am still proud of. My first time of walking on a treadmill with a harness. I felt liberated to be on two feet again and my family cried when they saw the photos.
After the intense program finished, Amy and I were due to go on our trip to Japan and despite still using a wheelchair, we did everything that we wanted to do, and so much more. We travelled extensively and during the night I would religiously carry out my oddly-named exercises that ARC prescribed me. The holiday was just what we both needed. The following week I returned to ARC. Part of me was nervous about what was to come, hoping that my holiday hadn’t set my progress back. But no pain, no gain.
In the process, I learnt a lot about FND. I understood what it meant and how to manage it. Each week I would work on strengthening a different weakness and learn techniques that made it manageable. Every step changed my life for the better. Soon, my legs started getting stronger and we were trying new things. The good thing about my two amazing physicians is that whenever they took me out of my comfort zone they didn’t just let me fail. Their supportive, empathetic and clear guidance made me feel safe. I trusted them. For the next few months we worked on my balance and engaging my muscles again. It was like a switch was flicked on and I progressed with every session. After working with Anna and Katharina for 8 months, I am now able to stand and do my cooking, cleaning, gardening and bushwalks. If you asked me over a year ago if I thought I would be doing what I am today, I would have probably cried and said no.
Whilst I have had times of being frustrated I live by an ethos once told to me by someone special. Giving up is never an option as there is no such thing as defeat, it’s just about learning a new strategy to live with what is difficult.
So whatever fight you may be fighting, be kind to yourself and never give up. There is always hope. Just take one step at a time.
Beck 🙂
