Hi y’all! My name is Max. I’m queer, trans, and I live in New Orleans with my partner and our emotionally dramatic dogs. I come from small-town Louisiana. I work as a therapist serving the LGBTQIA+ communities of the major metro and surrounding areas, and I’m also disabled with multiple chronic illnesses.
This is where gofundme comes in: I could really use some extra help in the form of a new mobility aid… a foldable, electric scooter! They’re compact enough to fold to the size of a suitcase, and they can travel up to 15 miles on one charge. If I had one, it would be a game changer! I’d have access to activities and places I just don’t without it. It would also reduce the amount of pain and fatigue I experience trying to do “simple” things like getting groceries. These awesome little scoots are pricey, however, and I can’t afford one on my own. I know many of us are strapped for cash. Please only consider donating if you want to and have the means to do so! Every tiny bit is helpful. Thank you for being here and in community with me, and if you don’t mind sharing this link, I’d be immensely grateful. If you’re interested in learning more about my disabilities and how they impact me (aka why you’re here right now!), please keep on readin’.
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Alrightyyyy, so, one of my major conditions is POTS (Postural Orthostatic Tachycardia Syndrome), a form of dysautonomia. This is a fancy way of saying my body is allergic to gravity. My autonomic nervous system can’t regulate properly, which includes my blood pressure in response to changing positions, like going from sitting to standing. Once standing, blood pools in the lower half of my body, which means I regularly lose blood (and oxygen) to my brain and internal organs. My panicked brain triggers a huge release of noradrenaline and norepinephrine (fight or flight chemicals) to make my heart beat harder and faster, trying to get blood back where it should be. It truly sucks. The brain fog, dizziness, palpitations, shortness of breath, headaches, and memory problems that come with it really get to me sometimes, and these are only a handful of my symptoms.
Physicians who specialize in POTS compare our functional impairment to those with chronic obstructive pulmonary disease (COPD) or congestive heart failure, and our quality of life looks similar to someone on dialysis for kidney failure. This process, happening all day every day, is utterly exhausting. I can’t keep my arms above my head, turn my neck too far, or squat for longer than a few seconds, or I feel like I’ll faint/I start to lose my vision. It interferes with my ability to take care of myself, to work enough, to shower regularly, cook, clean, walk the dogs, travel, do laundry, change a lightbulb - you name it. One of my most regular challenges is walking for longer distances. In addition to all this, I have a rare spinal cord disorder called syringomyelia, and I’ve had new spinal changes and neurological symptoms pop up that have made life more complicated and more painful over the last year or so. My balance is getting worse, and my mobility is slowly becoming more limited.
For a long time, I was too embarrassed and didn’t feel like I was allowed to take up space as a disabled person, which meant not giving myself permission to use mobility aids. But I’ve come to realize that getting tools designed to make it easier for me to function *just makes sense*, no matter if someone thinks I don’t look sick enough to need it. As difficult as it is to be vulnerable and ask for help, I’m trying to do the thing! If you got this far, thank you so much for taking the time to read my story. I sure appreciate it.
If you’re a glutton for information and want to keep reading about these conditions, here are a couple of links!