In all honesty.. It has become embarrassing for me to write publicly over the past few weeks (hence the pause in my blog posts). It is very apparent that my mental/cognitive/communicating abilities have been seriously diminishing over the past month. This is not only extremely frustrating (and devastating) but very obviously tied to the status of my health (neurological problems and cognitive decline have been much more present). Luckily, there is still part of my brain that is aware enough to know and pick up on these signs. A few weeks ago I noticed that I was leaving out large gaps of words in sentences while writing, my spelling became more horrendous than usual, letters look ‘weird’, and more and more I have to read a sentence over about five times before comprehending what it means. Sad to say: I feel trapped inside a brain and body working at about 1/20th of its potential, so the idea of trying to articulate the gravity of this feels like moving a mountain while I can barely lift a finger.
Today, (with mostly my anger giving me any kind of drive) I decided I am going to try and write anyway, no matter how long it takes.. no matter how many times I have to go back and correct myself or add words I left out, no matter how un-articulate my writing feels.. because the experiences I have had as of late, though not especially ‘uplifting’, are still worth expressing. AND regardless of the fact that my brain ‘feels like’ it has been turned into worthless mush…I’ll be damned if I let this dis-ease quiet me.
Thus far I have prided myself and my blog on being quite the example of honesty, vulnerability, and empowerment and as much as I want to write and tell the world that my optimism, spiritual insights, and ability to surrender into terrifying and unpleasant moments (days, and months) has healed me… it hasn’t. The honest truth is that I have been getting sicker and sicker and on almost a daily basis I am experiencing what feels like ‘an alien life force’ taking over my body, mind and soul (for those of you who are living with a body inhabited by Lyme, parasites, co-infections and/or mycotoxins, you know EXACTLY what I mean when I talk about feeling ‘possessed’). Every day I have moments (that become hours) where I am shocked with sudden perspective about the reality of my life. I remember what my life used to be like: the conveniences I used to have, the abilities I took for granted, the comforts I didn’t even think twice about… and BAM! Here I am laying on an uncomfortable foam pad, trapped in my truck (which is now my home) because its raining, cold because my warm clothes got contaminated, trying to figure out how and the hell not to let any water in to prevent mold, too weak to move, heart pounding, in the middle of nowhere Utah, and I think to myself: WHAT THE FUCK IS GOING ON!? HOW DID THIS HAPPEN TO MY LIFE??? Sometimes I actually laugh out loud because this is INSANE. And while this is all happening, for what ever reason..I am not giving up, I am still doing my best to keep a positive attitude, I am doing whatever I can to cultivate the observer within me so that I can ‘witness’ what is happening, rather than being swept up and swallowed whole by the poisoning within and outside of my body. With that said, I still believe I am going to heal from this, I still believe that my ‘experience of this experience’ is of the utmost importance to work with, I still believe that my healing can and might be miraculous, and I still believe that whatever the hell this is… it’s not for nothing, it can’t be. (this has got to be some kind of initiation, right!?) Like a faint flashlight in the distance, I see ME (whole and untouched), and I am DETERMINED to dig myself out of this, no matter what it takes.
Now onto the subject!
(can I get a megaphone up in here!?)
In my previous posts I have talked a lot about coming out of the ‘victim mentality’ (which I still feel is incredibly important for anyone on this journey), but after spending the last month in what I can honestly say feels much like a sci-fi horror film, I can’t help but change gears a bit in the subject/tone of my post: I now think it is necessary to talk about (hopefully with tact and clarity) the incredible injustice and neglect that has become so glaringly obvious to me as of lately (in regards to living with this type of illness). For a while I felt like I could do this all by myself (not that I had any other option really)…. I thought my optimism and perspective on this being ‘some kind of vision quest’ could on its own carry me right out of this hellish dis-ease…. sadly, I was wrong, and I am not afraid to admit that I was wrong (I gave it, and am still giving it EVERYTHING I’VE GOT). The insights I have gained and the lessons I continually learn from this experience are invaluable, but I am not ashamed to say now: I need some help ( and I have started a fundraiser to do so!) . I am also not ashamed nor do I feel like I am being a victim when I state: There is some serious neglect and injustice being done in everyone’s life who suffers from these illnesses, and something needs to be done about it. I do not think I am wrong to speak for us all and say: WE (anyone suffering with ‘invisible illnesses’ Lyme, biotoxin illness, CFS, MCS, ME, etc) NEED HELP. We need funding, THIS needs research, we need validation, we need our families to have our backs, WE NEED SAFE HOUSING, we deserve caretakers and helpers, and we need more of the world to be educated about what the hell is going on!
How on earth is it possible that SO MANY PEOPLE are living sick and outcast in some post-apocalyptic reality while hardly anyone is looking into what the hell is going on??? Thousands upon thousands of people are struggling with these invisible illness’s…Most of us being left to our own devices, homeless, completely ignored, misunderstood, and abandoned by friends and family because of ignorance and the consensus/diagnosis by main stream doctors (and family members) being: hypochondria, hysteria, psychosis, somatoform disorder, stress, or anxiety (occasionally we get some autoimmune diagnoses that maybe gets some validation, but hardly explains the entirety of the picture). Someone please tell me: How is it possible that so many people could possibly be experiencing the same hypochondria? The same chronic debilitating pain and fatigue? The same hypersensitivity? The same brain decline? The same MADNESS?!
How is it possible that these illnesses are still being neglected?
I sit and think about people going on with their daily lives (sitting in their houses, going into buildings, buying items without fear that they will react to it or be poisoned, using their ‘intact’ brains and bodies, going to work, socializing, celebrating, hiking, walking, fighting over and worrying about STUPID SHIT, hugging, cuddling, sleeping on a bed!), and I just can’t wrap my head around the distance and difference between my life and theirs. I just can’t come to peace around the fact that if this were ‘cancer’ or any other well known ‘legitimate’ disease, I (we) would be completely supported, taken care of, safely housed and surrounded by friends and family for good. I will spare the rant on the absurdity of ‘most’ allopathic doctor’s denial around what is happening…. but my god, this just gets more surreal by the day!
Side note: I am fully aware that comparing my life to the lives of others does not do me any good at this point, but for the sake of being honest.. it is really hard to ‘not go there’ sometimes. I also understand that if I were on the other side of this, MAYBE I would not be as understanding or determined to ‘fix’ or ‘help’ someone who is in my situation as I think I would be. There are also many people in this world including doctors, (who are not sick with this) who do care, who do believe, and who are advocating for me and for everyone who is going through this and I want to say: I am so incredibly grateful for those people (so many of my friends included). I just wish the awareness and funding around solving some of these serious issues was at more of a forefront, instead of a distant conspiracy denied by the masses.
So where to go from here?
Sadly I think it is going to be up to ‘US’ to figure out most of this for ourselves. It is my dream to create and run a safe utopia for people who are going through this, unfortunately I am going to need to make a lot of headway in my own recovery first before I even begin to dabble in how to make that happen (if I could only go into casinos without getting sick, I could raise enough money from hussling in card rooms to build this oasis). There has been a lot of talk in the Biotoxin communities around creating such a place, but the problem lies in the fact that we are all seriously ill, our brains don’t work quite like they used to, we have limited energy reserves and are all going broke trying to save ourselves. One can only hope that the right people with the right resources are going to come together very soon in order to make safe housing, affordable care and treatment possible.
We are the pioneers in this crazy epidemic, which (whether we like it or not) puts quite the load of responsibility on us to start figuring out how we can possibly live and navigate life with this illness. We have to advocate for ourselves and for each other, and do whatever it takes to find some sort of peace (let alone get our basic needs met). I can honestly say that the compassion, connection and support that has come from other people living with this is a huge part of what keeps me going, everyday. We are seriously special people, and the giganticness of our hearts (as a result of what happens when you are sick from this) is what is going to carry us through… not to mention we all seem to be exceptionally smart and determined! So lets continue to join forces and keep trekking on, one foot at a time, one step after the other, and there has has got to be some light at the end of this tunnel. ❤
And with that I will end this rant.
Last but not least! As some of you already know, I have started a fundraiser to help me get some of my basic needs met and also to afford some much needed medical care. If you want to support me by donating (any amount is truly helpful and appreciated!) or by sharing my fundraiser on Facebook or with friends, I would be forever grateful.
Thank you and love to you all