Four years ago I joined the I Ho Chuan team for my first year of mastery training. I faced challenges and failure but also had success and learned from every experience. During my time on the team I pushed myself to new boundaries both physically and mentally, furthering my understanding of what is is to be a martial artist and what it is to be a master. Unfortunately for me the start of my journey towards mastery was also the year that my genetic disposition started to manifest.
Adrenoleukodystrophy is a term I have become familiar with this past year, the diagnosis of this disease, specifically the adult version AMN, took so long because of its rarity. My body does not create a protein that breaks down long chain fatty acids and because of the build up, the insulation of my nervous system is being eaten away. What this means for me is a constant pain and a lack of most sensation in my legs, causing difficulties walking. At the moment my condition is stable, so far my MRI scans have shown the disease isn't affecting my brain but now I will require frequent scans for observation. There is no cure for this disease and the only treatment stops progression in the brain is bone marrow transplant that will require a reset of my immune system.
Even though there is no cure, I have been accepting and undertaking any recommendations that the various healthcare practitioners have presented. During my first physio appointment the head of spasticity suggested leg braces to improve my gait. By chance, there was an opening with orthotics and I was fitted that day. Now that I have paired these braces with appropriate shoes, I can almost walk like I used to. I've also started a regime of medication to help me get to some form a regular function, starting at low dosages to encourage a healthy use.
One of the common remarks about my condition is how well I am physically working through it. Each of the specialists I see is surprised with what I am able to do despite having an ailment that could result in me requiring a wheelchair for the rest of my life. Kung fu has been my framework for movement for so long that despite my nerves being damaged there is still muscle memory that allows me to ground and center myself, there is still that ability to tell my legs to move. Without having a system that I have been building and refining the base of for most of my life, I do not know if I would be able to handle having the rest of my abilities crumble. I think it's that thought of probable restriction that drives me to maintain what I have for as long as I can.
I am thankful that I have cultivated ever growing and close friendships, have been apart of teams that have shown absolute support, and have a family that has always been there from the literal start as well as the members that have joined along the way. Without this framework I wouldn't have the joy filled and secure life that is overcoming a terrible and unforeseen uncertainty. I am currently waiting for a donor match to be found. Once a match is found I will begin the rigorous processes of chemotherapy and transplant, but I know that with my safety net I will be able to get through the rough times ahead.
