This needs to get out to people who do not know me. Every one of my friends has donated; they're the only ones who have donated. I'm working on a way to generate income through writing (since I'm too disabled to work a normal job), but for this very moment, I'm in crisis and I need help.
ONE LAST PUSH. I've done what I can do here; it's time to go home. I'm back on my medications (because I need to be, not because I want to be), and I need to buy several months' worth before boarding a plane to the United States, where I'm entirely uninsured and know nobody who will let me live with them in a state that has expanded Medicaid under the Affordable Care Act. So I'm hitting the ground in the States entirely uninsured. I've come through sheer hell here, and I have significant problems that need to be addressed by specialists I cannot afford to see in South Africa (a cardiologist is first on the list). Each round of meds costs nearly $200 for a month. I'm praying to leave this country in three weeks time with six months' worth of medication, so that I have time to hole up at my mother's (in Virginia, where I cannot get insurance because they don't have expanded Medicaid) and make a plan on where I can live and how I'm going to move about and what doctors I'm going to see and how I'm going to make any kind of a living when some days I can barely walk (but I can write, and I will - just get me out of this weeks-long anxiety attack over money for medications first, they control my heart rate and I need to survive to MAKE it to the cardiologist).
FOR THOSE WHO DON'T KNOW ME (or who do but don't know this) - I have Mitochondrial Disease. It means my body is a war zone on the inside. It means I'm slowly losing my ability to control my extremities. It means I'm partially paralyzed, more so on some days than others. It means I have dysautonomia, which is a fancy word for saying there's autonomic nerves inside of me that don't work anymore, and they cause me extreme difficulties with tying my shoes, buttoning a shirt, or doing anything else fine-skilled with my hands. It also causes me extreme pain. I hate being dramatic – but seriously, extreme.
Thanks to a lot of people who love me, my own stubborn will, and the help of a LOT of Western medications, I'm not, in fact, living in an assisted living facility already (and how would I afford one...?). I'm actually an international backpacker, currently living in South Africa, and my name is Christine. There is no denying that my situation is dire; that it's a hell-card to get..... that it just plain sucks. I've spent YEARS lamenting dashed hopes and abandoned dreams (I was a straight-A sudent at a well respected University, working on a quest into the hard sciences when, out of nowhere, some no-longer-ignorable.... terrifying... humiliating... debilitating ilness took me down in 2008; I was 23, then). It's taken me a long time (and a LOT of trying desperately not to die) to get this far. To meet the right people; to remain this sane; to re-gain my sense of self-worth in the face of what is, yes - a debilitating and ultimately fatal illness - to release the expectations of other people on what I may be capable of achieving in life. And to gain some semblence of understanding on a fundamental level, that I hope you – whoever you are - don't ever have the experience to understand.... that my just being alive, not in a mental institution, or a drug addict - are actually signifcantly substantial accomplishments in and of themselves. It's taken years to get to a point where I can see legitimate hope on the horizon; where I can see a place for me to stand up on my own two feet and take responsibility for my life – illness and all – in a way I no longer thought possible.
Right now, I'm following the path that seems to have been laid out before me, with as much grace as can be mustered in the dignified shuffle of the crippled: the dude I was travelling with two years ago - is a practiced herbalist and is vastly knowledgeable in the ways of plant medicine. His actual background and degree are in Natural Resource Management, so the majority of our time both in South Africa and Swaziland were spent on permaculture farms and eco-villages owned and operated by his friends. Through this association, I was fortunate enough to glean some knowledge of various plant medicines, as well as to make many friends within the permacuture/plant medicine community. I've befriended many, many South Africans, and my leaving this country in three weeks time is causing me great heart ache. But it's time to go home.
I've done what I can do here, and received excellent medical care (a HUGE thanks to the doctor who took me on for free because he wanted to help a terminally ill girl live out at least one of her lifelong dreams) – after years of being in what is neuro-chemically known as the "Fight or Flight (or Freeze)" response, I have sustained significant damage to my brain/body.
The constant haywire internal nerve damage causes long-term changes in my neurophysiology by constantly bombarding my entire being (namely, my brain) with chants of alarm - a constant "panic" button, a screeching warning to my brain that the body itself is in agony and is therefore in literal danger of death (I'm dying, but not today, as far as I know - this could take awhile).
It's a basic mammalian brain structure for handling trauma; anything the mind/body perceives as life-threatening is treated as such, regardless of my sitting there telling it to shut up. But, it's the same literal Central Nervous System response to shock - or hours of trembling - experienced by an impala if it has been chased by a lion (and somehow managed to not die): the animal is alive, but the animal has residual chemical energy built up during it's ordeal that needs to be released or it can cause more permanent damage to the organism, mentally and physically. To be in this "Fight or Flight (or Freeze)" state for a straight decade (actually, for far longer – I've known something to be very wrong with my physical being since right when I hit puberty - it just became absolutely crippling and completely undeniable at age 23) causes Post Traumatic Stress Disorder, regardless of how chilled you may think you are or are determined to be. As I've watched my body deteriorate in terrifying ways, at terrifying speeds, and not known what to do to alleviate the pain and handle the crisis, so too have I watched my mind become brittle - resistant; reserved; angry. I'm in survivalist mode at every moment of every day - it alters every single experience I have with every facet of the outside world; every conversation, every physical action, every potential move, every relationship, every decision.
The Western medications I take are an attempt to quiet the alarm whistles of my imminent death - since I know my death from the literal disease itself is NOT imminent (unless something really messed up happens - and every case of Mito is different, so it's always POSSIBLE, but in all likelihood it will be years before this actually kills me), the internal alams are caused by damage that makes my body FEEL that it's dying RIGHT NOW.
Let me be clear: absolutely none of the Western medications I take actually FIX anything; every single one of them merely stems a very severe symptom from presenting as severely as it would otherwise. It makes basic and complex tasks possible, to whatever extent that it/I can. With their aid, I can do things I otherwise cannot do - tie my shoes, do zippers on jackets, hold things in my hands without assuredly dropping everything against the will of my brain (this happens often anyway, but seriously - holding items at all would be a critical challenge if my hands and forearms were always aware of how badly the muscles tremor). The medications allow me what freedom of movement I do have; what autonomy I do have.
BUT - the medications cost a fortune. The US insurance system currently requires that you have money, an employer, or at the very least a permanent address in order to acquire any sort of medical insurance. I have none of those things, and my family (meaning my mother) has been purchasing the Western pharmaceuticals originally prescribed by American doctors here in South Africa for almost two years.
The costs of keeping me alive have tapped us out. It's time to address this all-too-real problem far more deeply so that I can play a better role in my own future healing and existing; I need to be released from some of my own mental and physical bonds – even any small amount - in order to more fully conceive of and implement my future options. I need my brain to be able to work so that I can better help myself. So that I may be capable of taking care of myself, post-treatment.
I'll continue to post updates about my progress, my journey; my struggles, my joys, and my adventures (and mis-adventures) from my past. I've gotten such a call for my writing, it seems to make the most sense to continue updating everybody via a blog, which I will constantly link to this fundraiser; so if you like my content, maybe throw in a few rand/dollars/whatever currency you have (even a few dollars go a LONG way over here) – I do so swear, I will karmically pay it all back somehow, on the other side of all of this.
I'll actually live, instead of merely survive. And I will create – I will never stop creating. Words are my gift, and I'll find some way to continue to use them whilst making an actual living. I'll use my words (and again, my sheer force of will) to craft the web of a well-fulfilled life. Thank you, sincerely, to all who have and who do contribute to this unfair and yet insanely beautiful life journey of mine.
- Marianne Linker
- Tara Greggains
- R Parasmo
- Jarrod P