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BROUGHT TO MY KNEES Dear friends, I wanted to send you an update on my health. I cannot lie – I am going through my own personal neurological Lyme disease hell at the moment. The “brain fog” (and those words don’t even *begin* to describe what it’s like) is utterly hellish and seems to be getting worse as each month goes by and makes each day something of a living nightmare. How to put words to it? It’s like a constant terrifying, dizzying, drug trip, one that never ends and there’s no way out of – a kind of detached, spaced-out, depersonalized, derealized liminal realm, like I’m living in someone else’s life, far away from the world. I can barely remember my old life anymore. The past 40 years seems like someone else’s dream. Time has virtually disappeared for me and I often have no idea what day it is, what time, sometimes even where I am. (Please don’t be confused by the seeming clarity of this letter. I can have all these symptoms AND sometimes write and speak clearly, and that doesn’t mean that I’m well. Complex chronic illness is… well, complex. And very often INVISIBLE. And that’s why so many people are gaslit - misbelieved, called crazy and told that it’s “all in their heads” if they dare to appear normal - sometimes gaslit by their doctors, sometimes by their own friends and family members.) I’m dizzy, nauseous, often disoriented, overheated, heart pounding from the dysautonomia, sometimes can’t remember where I am or how I got here, tinnitus in my ears like low level screaming all day, autonomic nervous system dysregulated, tired yet too wired to really be tired, and even a good night’s sleep doesn’t help, I wake up exhausted always now. And the fatigue is like nothing I’ve ever experienced before, like a cell-deep tiredness, like being pressed down constantly towards the Earth and towards sleep and death, brain so fatigued and fuzzy I can hardly think (again, don’t let the apparent clarity of this letter distract you, it took me two weeks to write, through pain and tears, if we still used pen and paper the ink would be blotched and the paper crumpled), multitasking is out of the question, it’s literally one thing at a time now, one moment at a time, and all else has faded into blackness. Really like walking through thick fog, batteries fading in my beloved flashlight. Yes I can still write sometimes, and that is one saving grace. But it’s really like being alive whilst dead now, even the ‘better days’ are experienced in a kind of hallucinogenic hell. Yes I had heard people in the past share about their symptoms of Lyme, CFS/ME, POTS, autoimmune disorders, all kinds of other chronic and debilitating conditions, but I never in a million years imagined what hell it could be like inside of it all. Those who do not know, do not know. I feel like I am clinging on by a thread to existence, on the verge of losing consciousness, half passed-out, half awake. After 10 months of this nightmare there is a strong pull towards everlasting rest now, towards shedding these earthly clothes and returning to the Unmanifest, my true Home prior to the bodymind. At the same time, I really do want to live and get well and fulfil and do everything I am meant to fulfil and do in this life. There is so much left to do and so many beautiful moments left to experience. But I am torn by the twin pulls of Eros and Thanatos now. In this strange middle liminal space. There are so many adventures yet to be had. I love life so much. But I cannot lie - a battle is being waged, daily now, and I’m just trying to stay alive through these hellish physical, neurocognitive and neuropsychiatric symptoms, trying to see the treatment through, trying to get to that clinic in Germany (and omg thank you all from the bottom of my heart for supporting this!), trying not to succumb to the ever-stronger pull of Thanatos, trying to hold to blessed Eros and her will to life and trying to ‘be courageous’ (easier said than done) in the face of deeply devastating and disorienting circumstances. Each day is a struggle now, If I am brutally honest. I am exhausted to the bone after 10 months of this, 10 months that have seemed like 1000 years, no joke, 1000 years of living in a foggy daze, days passing in a blur, not knowing if I’m awake or asleep, if I’m dreaming or not, if anything is real or if I’m even alive anymore. Dreaming and waking life blur into each other, life and death are indistinguishable, my short-term memory is so poor I have very little idea of what I did today, sometimes I think it's time for breakfast when it's time for dinner. It is so disorienting and dizzying words could never begin to capture it. Those of you who have had bad acid or other drug trips may have an inkling of what this is like. I just never imagined this kind of daily living hell was possible. The infection has reached my brain and nervous system, confirmed by a number of experts now so at least we know the cause or at least a part of it. I am being battered daily by bacteria and other pathogens, tiny creatures who are taking such a massive toll on my internal systems in their own will to live. I just wish I had some comforting or inspiring words to offer now. I do not. I have been humbled beyond humbled by this process. I DO want to live and heal. I do want to get through the days and get through the treatments and come out the other side. I would take even 15% better right now, I would, I have been on my knees praying for 10 months for even that. I have been doing my part, I hope, I have radically changed my diet, been taking all the supplements, herbs, pills, infusions, vitamins, anyone has recommended, I have seen therapists and energy healers, psychics and bodyworkers, psychiatrists and neurologists and every other kind of doctor. I’ve done rigorous inner inquiry, questioned my deepest beliefs, confessed my ‘sins’ to myself and to others, been held by friends while sobbing, raged to the heavens, faced my most profound terrors, moved back and forth through all the stages of grieving. I’ve been taking all the recommended concoctions for Lyme, been having the IV antibiotics, I have had so many incredible friends supporting me these last 10 months, so much love pouring in from all sides, so many relationships have deepened and strengthened and some have fallen away in a kind of radical purging, so many things have healed within me and between us and there has been such great beauty really like a process of purification and divine cleansing. I have moved through so much denial and anger, guilt and shame and fear - especially in the beginning, when I first got ill, I felt so much ancestral shame and guilt and fear around being sick and weak and not being able to cope - (THE DEEPEST TRUTH OF ALL: THERE IS NOTHING SHAMEFUL IN GETTING SICK AND BEING VULNERABLE AND ASKING / BEGGING FOR HELP!) - yet now, having moved through a lot of the muck of it all, I feel more of a strange kind of contentment even within the hell, a sense that my life hasn’t gone wrong and somehow this was all meant to happen and I did nothing wrong and God has been with me the whole time breathing me pushing me keeping me going and so life hasn't gone wrong even if it my worldly life ends soon and does life really end I don’t think so, ‘end’ is merely a human concept and all human concepts dissolve in a non-conceptual Truth. At the same time, the urge to sleep, to shed this body-mind and rest in pure Being is strong, I will not lie. The pull to the end is very alive in me. My close friends know this, my doctors and therapists and family know this, and I am fighting to stay alive and not give in to the forces trying to destroy me, whether that is a metaphor or literal. But I am so damn weary at times, and when the brain fog is more akin to dementia, when I am dozy and in a terrible fog and don’t know where I am and life seems a million miles away the temptation to leave is just so powerful, like some entity has taken over – and in a way, it has. The Lyme bacteria and the toxic mould spores have colonized my physical body, entered my nervous system and brain, so this ‘possession’ or ‘entity’ is not even a metaphor really, it’s biological fact, for those of you who believe in science. And so, I have no inspirational words right now, I am just in a day-by-day struggle to keep going, through the timeless fog that seems eternal, through an experiencer that seems to be fading away. Friends and mentors say, “Jeff, you will get through this, I just know it, stay positive, hold to hope, people do get out of this hell…”, and bless them, they really mean it and truly care and I want to believe it, I mean truly I do, but in the druggy drowsy dissociated fog of this liminal space sometimes those words are like Chinese words to me, I cannot understand or even process them, like being told that “one day” you will be out of the water when you are drowning each day, gasping for breath, which sometimes I literally am because of the POTS. It is so hard to hold to any kind of rational, conventional reality. I know I am not the only one living with chronic illness, I know I am not the only one suffering each day, trying to get through, fighting to get through, and my heart goes out to all of you in your own personal struggles, both mental and physical. I pray that you make it. I pray that I can make it. I would love for all of us to make it together. Yet, I surrender. I know I am in God’s hands now, and always have been. In the hands of great and mysterious forces beyond my control or anyone’s control, and in the hands of doctors and healers and therapists and good friends who can hold me in my terror and sorrow and longing for the end of suffering, but ultimately I am in God’s hands, yes, and whether I live or die, somehow it doesn’t feel up to me anymore, and that is a great relief. I have been fortunate to have been given a beautiful life. I’ve had so many adventures. Made so many wonderful friends. Laughed and cried and felt and experienced so much. Been so touched by the world. If it all ends now, or in 40 years time, I have been blessed. 40 years is a full life though, it truly is. We are all going to die, and surely quality of life and number of lives touched and amount of beauty experienced along the way is way more important than number of years lived, I have been with enough dying people to know that. And so I continue putting one foot in front of the other. I continue as long as I can continue in this fucking hellish night and fog. I hope I can continue for a long, long time. And if not, if Thanatos manages to pull me right down into their bowels, know that I have loved you all, and I have been loved in return. Some may say I am exaggerating all this, creating drama where there is none, too ‘identified’ with the bodymind and the manifest world, too ‘lost in ego’, too ‘indulgent’ in my suffering. Some may say I am now in full resistance to life, overthinking, stuck in a story. Some may say I am too much in my head, or I’m doing all this for the attention or pity. Bless them all, all these voices of fear and ignorance and shame, voices of ableism, and I say to all who deny or minimize the struggles of the sick, and the often terrible lonely reality of chronic illness, you do not know until you know, and you cannot speak for the experience of another, and I might have thought and said the same before it happened to me. Ugh, the hubris. I just would never have known this kind of daily physical hell was possible. I understand why some people with chronic illnesses decide to take their own lives. I really do. I would never judge anyone for choosing to leave. It seems to me to be a basic human right, a birthright in fact, the right to self-determination. And it took being inside this hell realm to wake me up to an even more infinitely heartbreaking compassion for all beings. All beings. A compassion forged in the fires of hell, as ironic as that may be. Yes, hell can forge compassion, and damn what anyone else says. Et lux in tenebris lucet. Hell has no real power over love anyway, and the Light is everlasting and destroys hell prior to time. Sometimes we must come close to death in order to understand life even more deeply, that’s really what I am saying, the rest is metaphor. Anyway, I do hope I can survive this. I would love to live. I have always loved life so much. But I am on my knees today, humbled, in prayer, to great unnamable forces, to my ancestors and to all who will come after me, to the neurotoxic mold spores and the Lyme bacteria itself, more mysterious than I could ever imagine, more powerful than I ever knew, as much an expression of the Divine as anything else. This confession may end my career but at least I can end it with integrity. At the end of the day, I am just a human being, suffering, brought to my knees through sickness, surrendered completely to the mysteries of creation. In God’s hands, and if you don’t like the word ‘God’ know that it’s just a pointer to the ineffable, pre-conceptual Mystery of the Universe, prior to all organised religion, a “finger pointing to the moon” as they say in Zen. I may write ‘beautifully’ – and, well, thank you to those of you who say that – but please know I am writing from the depths of hell and despair. A little light in the darkness. I pray that the light does not go out, I know that it cannot really. I thank you from the bottom of my heart for the love, the kind words, the incredible support, the donations, the poetry, the good advice, the healing. I cannot thank you all enough. Bless you. I am overwhelmed and on my knees today in gratitude and in reverence and in submission and in the deepest prayer. And utterly, utterly in God’s hands, and I guess I always was. And I guess we all are, throughout each inhale and each exhale and through the sacred spaces inbetween. - Jeff Foster ... See MoreSee Less
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wonderofbeing @wonderofbeing
Hi Everyone. As you may know, our dear friend Jeff Foster is seriously ill with chronic neurological Lyme disease a…
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