“There is no essential difference between what we call a genius, and everybody else except the so-called genius finds the correct method of using himself” Moshe Feldenkrais
I haven’t written a blog since September because I did not want to publicly share what I often experienced as ‘insanity’ in the midst of the insanity. I wanted to wait until I made it to the other side, or until some solid center emerged from this; Apparently that solid may never form, so I will continue to share my multidimensional fluid perspective as is. Since there is no ‘end point’ or ‘answer’ to finding peace (physically or emotionally) while living with chronic illness, I will keep on writing about my experience in the midst of my experience (that is all we (I) ever have anyway, right?). And though I feel twinges of regret, embarrassment, and the urge to ‘delete, delete, delete’ every time I publish a blog, I do know that what I am going through can not be for nothing. And for the sake of my own survival and for the sake of finding purpose in all of this, I have to make this ‘not nothing’.
When I was younger, I developed an affinity for the number line: -3 -2 -1 0 1 2 3….It made me think of the human experience, the capacity to hold, and how all of our ZEROS are relative. So many times in my life I have gotten to the point where I think ‘I’ve hit bottom. THERE IS ABSOLUTELY NO WAY ANYTHING COULD GET WORSE THAN THIS’, yet I have continued to hit different ‘bottoms’, and continued to reach and experience farther down that number line than I ever thought was humanly possible. Fortunately, some part of me has always suspected that the capacity to hold or ‘be’ does not just go in one direction and if that indeed is true, then the past year of my life must qualify me for some gargantuan ‘purpose’ here on earth- this lifetime. I am starting to understand that not only are our ZEROS relative, but there are an infinite number of number lines, there is no bottom, this ‘experience’ is certainly not a linear progression, and there are ways to get from -67 to 22 without passing all the numbers in between.
A quick view/explanation (from one perspective) if you do not know my situation:
I have been (mostly and literally) isolated for ten months, homeless, very ill, and living outside and in the middle of no where(s) for most of that time (due to health issues). I lost everything I have ever owned, my most recent ex committed suicide 6 months ago (also sick, without a home, limited resources, etc), I am working with very challenging chronic physical symptoms (from lyme, biotoxin illness, ankylosing spondylitis, connective tissue disease, MCS, etc-does it really even matter?) and I react to mold and chemical toxins to the point where it is near impossible for me to live inside (or outside for that matter), be around people, or acquire belongings such as clothes, a bed, blankets (etc) without having severe reactions to ‘the stuff’ that’s on them. There seems to be no escape. I have driven all over the country looking for safe places to sleep, replaced all my possessions (which is not much) several times due to contamination, seen many practitioners, tried a gazzilion treatments, and have done everything I possibly can to find some kind of relief from the ongoing chronic symptoms and the constant reactions to things in my environment. The reactions I have are NOT AN ALLERGY, they are systemic, neurological and excruciating (hence my extreme attempt to get away from things causing this). I currently sleep with tin foil blankets (or none at all), I wear a respirator in the house I am temporarily staying in, do not own a towel, wash my hair with a hose, am getting very good at being cold (and very innovative to solve the weirdest problems!), and every night I choose where to sleep based on what symptoms I prefer to have over others (which usually involves me on the floor curled up by a space heater).
On another note: I am seeking ways to heal/live with/create a different response to my environmental sensitivities by re-wiring my brain and body (with a slew of modalities based on the concept of neuroplasticity) instead of making my life solely about controlling my environment. It became clear to me that isolation, fear and stress were not getting me the life I want (or well physically), so I changed courses. THIS HAS NOT BEEN EASY. I just recently chose to come back into society to be around friends and family three weeks ago. I hangout outside with people, go for walks, write, dance for small periods, am determined to get a wetsuit and get into the ocean and I practice Feldenkrais (my new love and passion). Otherwise put: Alongside the difficult challenges I am facing physically and with finding a safe (enough) place to live, I am determined to find ways to bring joy and connection into my life anyway I can, because that is the one thing I am sure of that needs to be in place for me to heal or have any semblance of a life beyond survival.
Now onto the very shortened recap of the last ten months of mold avoidance:
I am going to be really honest here, because there are no benefit in my withholding, and there is no doubt in my mind that some of you reading this will benefit from my vulnerability. Without the details, here goes:
Under certain circumstances, especially involving basic needs compromised coupled with isolation and illness that very much resembles military torture tactics: Anyone and everyone (no matter how ‘grounded’ or ‘together’ you are) will become undone.
For those of you who know me, you know that before I got sick, my path had not been an easy one. I worked excruciatingly hard to transform my life by spending four years (age 25-29) in a one of kind women’s apprenticeship/recovery program doing intensive transformational growth and recovery work. This included healing trauma, codependency work, addiction recovery, shadow work, learning leadership skills, facilitating classes, living in community, STEPPING UP to confront the ‘ugliest’ parts of my being, and working through resistance on all levels, constantly. All of that to recover from a decade of drug addiction, eating disorders, trauma (of various sorts) and an overall lifelong pattern of despair, terror, self-hatred and destruction. Going through this program transformed my life and helped me build what apparently is an unbreakable foundation. I am ever grateful for doing ‘the work’ and learning to love myself, because without that in place, I know I would not still be here with the current situation at hand. Ironically, the house in which I ‘recovered’ from all of this in was filled with toxic mold and is where my health took a turn for the world of Sci-Fi meets Horror (which honestly, I am trying to turn into a heroine’s journey/documentary where I divide my time between giving TED talks, helping others with chronic illness, and making art/music). I was already sick before beginning this program, but the mold exposure created a tipping point that I have yet to come back from. The irony of this all continually astounds me, yet does not surprise me in the least.
I have spent the past 10 months navigating emotional and physical territory that I would have not thought was livable for more than a few days, or possibly a few weeks, at most. For one reason or another (karma? bad decision maker? crazyskilled manifestor? genetically impaired? cursed? None of the above?) my life and experiences over the past year have been something I continuously thought I was not going to make it out of. And while I do not like to consider myself a martyr, I have hung on many times from the sheer perspective that what I am going through might benefit humanity in some way or another. I became quite innovative in ways to shift my perspective, but there still has reached a point every single day lasting minutes or hours (sometimes weeks) where I feel or say to myself with utmost certainty ‘I can not/will not do this anymore’ and I REALLY mean it.
My life has largely been an ongoing OCD/PTSD survival game (and what has felt much of the time like what I imagine a prison torture camp to be like). These past ten months have made my experiences with heroin addiction look like a privilege to be enduring (speaking of ZEROS being relative). This is not to say that every moment of this has been purely traumatic, nor am I saying that I am the only one going through this OR that this is the only way to experience these circumstances (there are thousands of people in similar situations, and we are all in our own way SERIOUS BAD-ASSES for waking up every morning and continuing on). This journey has facilitated immense growth and opened me up to receive incredible miracles, support and insight that in no other circumstance could have provided.
And after many months alone, with nothing to do but lay on a cot, and attempt to take care of basic survival needs while sick and alone, there is no doubt in my core that the patterns and habits I have created (over a lifetime) or that have evolved or come to be inside of myself (subconsciously or consciously, biologically and emotionally) are the reasons I am in this situation with this particular dis-ease. It is no coincidence that certain themes of life challenges keep popping up over and over and over again for me to look at, and in their final stage they have manifested themselves physically. All of what I am speaking to is much more complex than ‘chicken or egg’ ‘empowered vs. victim’ ‘manifestation vs. shit just happening’ concepts. I hesitate to even begin speaking about anything involving the words ‘victim’, ‘empowerment’ or ‘privilege’ (because that would be a book, not a blog). What I can do is solidly say: I am doing my damned best to take responsibility for all that I can. My personal ‘genius’ is constantly evolving (finding the most effective ways of using myself and the most effective paths for any given situation), and at my personal best I can take a step back and laugh at the cleverness of all that the universe and I have co-created for myself.
A big breakthrough for me:
If I turn the problem I am solving into “how can I get to a point in my life where I can help others?” instead of “how can I end my suffering?” than taking my own life does not solve ‘the problem’. An added bonus of changing motivation is that through reaching my goal of ‘getting to the point of helping others’, my ‘problem of suffering’ will most likely be solved (through the back door).
When I quiet my fear and ‘desperation to find comfort in the excruciating’; When I am able to see beyond the incessant compulsion for relief from this dis-ease and all of its implications; When I grasp the importance of what any one/every one persons experience can be for the world, I can hear myself, in a loving and loud voice say: You my dear, are carving a very important path, and to give up now would be a detriment to the whole that all of us are connected to.’
(Making meaning out of nothing? Maybe. But honestly, If it keeps me going, who the hell cares whether I am right or not? )
Love to you all, thank you for reading, yours truly,