July 2, 2018
I wanted to include Dana’s writing. Due to her health this post below took Dana weeks to write.
Read Dana’s story HERE
“This is really scary to post. I've never been so forthcoming, but life is short…so here comes a generous helping of uncensored truth and feelings. I don’t expect you to read it all, but it’s an incredible gift to me if you do. No response necessary. I just need a break from my illness-induced isolation to speak up while I'm still able to express myself.
I've always been more comfortable taking care of others and tend to be very introverted when I'm suffering. The longer I stay silent, the more overwhelming it is to tell the story, and I fear that the truth sounds melodramatic because I've avoided sharing it so long. I feel like I've breached the etiquette of the “tragedy trajectory.” Usually, crises are finite. People recover, die or learn how to live with limitations. After a decade of persistent decline I got to the point where I couldn't even stand to hear myself talk about tragedy anymore, no less expect anyone else to have the energy to care or sustain support. But if you're inclined to know the real deal…
Healthwise…my constant full body pain has gotten unbearable. Just lying in bed feels like I ran 20 miles straight with the worst flu imaginable. Pain intensity makes me vomit, even pass out. No good and bad days…just a steady worsening. Every promising treatment has either failed or nearly put me into shock from uncontrollable allergic or inflammatory attacks. Due to serious reactions, over the counter, herbal and prescription pain meds are intolerable so I'm forced to endure this ineffable agony without relief options. I finally gained some weight, but have multiple, sometimes serious, recurring GI complications. My muscles have weakened so rapidly since April that I need a wheelchair for any distance over 30 feet. My respiratory system is so affected by muscle weakness, inflammation or both that I'm constantly gasping for breath with a feeling of suffocation (inhalers and oxygen don't help…on a part time ventilator). I'm losing my vision in a way glasses can't fix. My jaw is still in perpetual grueling spasms, as are my neck, shoulders and torso muscles from struggling so hard to breathe. Basically, I can hardly move, breathe, see, speak, read, type, eat, laugh (yep, even a hearty laugh punishes me with excruciating facial pain and a locked jaw for days). Listing all of it sounds so detached and sterile, but no words could possibly do justice to living like this. When I post occasional selfies, I wear makeup and try to look alive. I keep up my Instagram art account to put something positive out into the world. But behind the scenes I'm living in a physical hell no human should endure.
Few things gave me more joy throughout my life than studying everything I could get my hands on. I've always been an insatiable seeker ready to jump down any knowledge rabbit hole, eager to read, learn and make ALL THE THINGS. At times it was a mad scramble where it felt nearly impossible to settle into one activity because there was just too much fascination. Each milestone of loss was devastating. But I've never taken my senses for granted because as long as I had hearing, clear sight and a clear mind, I could make a world for myself anywhere, even in pain. Sadly, I've lost much of my memory/cognitive function because my body is in a constant trauma state (imagine trying to learn or recall facts while undergoing torture). Recently my vision became permanently blurry so I must strictly ration my eye use. Books, film, art, research, and visions of nature maintained my sanity while I've been locked away from the world and I indulged in them ALL day long. I can still listen to things, but I'm going absolutely stir crazy without the visuals I spent 95% of my day relying on for pain distraction. Losing my sight is the most frightening and depressing impairment yet (well, not being to breathe is up there too).
I’ve sustained myself over the years of sickness by falling ass backwards into mindfulness and a constant gratitude practice as I trained myself to focus outside the pain. I concentrated on and thanked the things about my body that WERE working (many of which are failing now). I anchored myself by staying awestruck and reveling in sources of gratitude that became increasingly nuanced and elaborately detailed over the years as my world continued to get smaller. There was so much I could still celebrate while my body stayed still. At times I rejoiced at how beautiful it would be to come back to life with this awareness intact. I don't think I could ever lose it; it's woven into every fiber of my being. Even the things people complain about would be a miracles to me. Give me ALL the mundane drudgery if it means getting out of this bed without pain again even once!
Now, an unpleasant mindfulness has emerged by necessity. I have to perform constant mental calculations to discern what movement or position will result in the least potential agony. I rotate baths, balms and heating pads. I can't sit in chairs or cars without unbearable discomfort. My skin has grown so sensitive that it feels bruised on any surface but a bed. My sense of hearing, touch and smell are excruciatingly heightened, causing innocuous stimuli to morph into painful sensory assaults. Every angle I sit, stand, bend, reach leaves me with lasting pain in one group of muscles or another. Just reaching for something on a shelf can literally injure me for days. You can't even imagine what it's like to withstand hours in hospital waiting rooms and endless doctor appointments in this condition. On many occasions I’ve thought the pain itself would put me in cardiac arrest. But my spirit is raging against this thing overtaking me; it holds onto a nebulous vision of hope. At times that vision comes into focus with crystal clarity, at times it devolves into a word...a plea..."help"...I go through my days on a strange seesaw of defiant courage and utter futility.
There are books I want to write. My convoluted journey sheds light on numerous aspects of our current medical system that range from bureaucratic insanity, to abuse, to a kind of Kafka-esque absurdity. My emotional journey could bring great comfort to those in the chronic illness community who feel ignored, invalidated, misunderstood, disenfranchised and alone. These aspects of experience are not witnessed or discussed nearly enough, because many people who make it deep into the labyrinth of our broken system never live to tell of the injustices and inadequacies they discovered there. I want to be an advocate, to share what I've learned the (very) hard way in hopes helping others tread the treacherous path of multisystemic disease. I tried to start projects that were meaningful to me like Kintsukuroi (sacredscars.org) and Art is Life (artislifefund.org), both of which I want to expand into community healing resources…but my body just can't handle the work it takes to get them off the ground. Since I was a child, I've deeply related to the Thomas Mann quote “Be ashamed to die until you have won some victory for humanity.” I can tell you, through tears…I don't want to die with so many stories still inside me, and whatever small victory I could have won for humanity left unrealized.
No matter how bad it got, I was always motivated by the idea that this pain has a purpose, believing that every way it broke me was another way I could learn to help myself and others. I focused on the desire to be a healer that took root in my heart many years ago and never stopped growing. I've learned to harness my empathy, to be fearlessly connected to people in healthy ways. I've spent much of the past physically immobile decade engaging in deep emotional healing work, expanding the horizons of my consciousness, cultivating discernment and embracing authenticity. This illness has broken my heart many times, but it also broke my heart OPEN; expanded it into levels of depth, compassion and clarity I may never have achieved in the absence of such striking adversity. It's been an intense existence. I know I can offer people sincere care, support and encouragement, and that seems like something the world desperately needs. I convinced myself that might “count” for something. So I kept fighting, despite the dozens upon dozens of doctors who gave up, degraded me, blamed or disbelieved me. It's going to be worth it. I'll be able to use this in magnificent ways, I told myself.
But is that just a ludicrous romantic delusion? We don't all have the luxury of a poetic ending. There are children who die every day...brilliant, kind souls who never have a chance to grow into their own boundless potential. Neither personal motivations nor a clear sense of purpose guarantee survival. I've known amazing people who died too soon, kids deteriorating with terminal illness, and extremely abusive people who made full recoveries from grave illnesses (or never had a major problem at all) and were able to live perfectly healthy lives hurting, using and manipulating others. Illness obeys no law of human justice. And that is bloody terrifying.
The mind goes to strange places as independence slips away and doesn't return, from odd minutiae to existential musings. I wonder if the last time I drove a car in 2016 will truly be the last. Will I ever put on a pair of high heels again? I see pictures of peoples’ activities and vacations, and think of all I wanted to explore from just outside my door to halfway across the world. I have random memories of myself as a child, and ponder the incredible potential that tiny vibrant life contained. But even great memories contain nostalgic pangs for capabilities lost. Will I ever be able to make new memories? The question lingers like a dense fog, while everywhere around me I see all that my body has rendered impossible.
I’d give anything to call a friend or seek therapy…but my jaw painfully swells shut after only minutes of speaking and my joints flare after only a little bit of typing. I do try to stay in touch with those who make an effort and it brings me great joy to communicate. But particularly as of last year, there is almost no outlet, no release, no way to seek comfort, no healthy coping mechanism or productive distraction I can FULLY participate in. I try to do everything I can with the limited function of my eyes, ears, jaw, hands and mind, but windows of possibility keep closing. Friends have offered to just come and be with me for a while, which I appreciate immensely, but it's far too painful and demoralizing to be unable to converse, so I have to refuse even “silent” visits. I either hurt myself terribly by overdoing it and pay the price for weeks, or become deeply depressed because I can't engage.
Even in my dreams I'm not free. The pain is so severe that it continues in my sleep and my subconscious incorporates it into my reveries in some fruitless attempt to resolve it. I haven't had a dream in the last eight years in which I wasn't searching for medicine, frantically stuck somewhere and unable to physically walk, or confronted with tasks I couldn't complete due to pain. Every single dream I have, without exception, is a nightmare of helplessness because the pain is far too intense for my subconscious to block out.
Compounding my frustration, every valuable thing discovered about my illness has been through my own copious, incessant research. This exceedingly complicated ad hoc medical education should not be my responsibility. There’s simply nowhere I can go to be treated where a case this complex and severe is actually understood and validated. The kind of curiosity, investigation and deeply individualized care that I need simply doesn't exist in our medical system. I haven't found a single person among the hundreds of thousands of people in medical forums with overlapping conditions who experience the full array and severity of my symptoms. Every single doctor says “I've never seen widespread pain this severe.” It’s frightening…lonely. I have reams of documents filled with lab abnormalities, but I know we don't have the whole story and I worry that there isn't time to discover it. I can't explain how, but one can just feel it when the body is nearly ready to slam its fist down and exclaim “That’s it! I quit this stinkin’ job!” (To be clear, I'm not planning to take my own life).
After a decade-long stretch of dashed hopes with rapidly rebounding optimism, for the first time I'm doubting a happy ending to this story. I'm trying to make peace with whatever the outcome may be, to reach a point of equanimity with The Great Unknown while doing my best to revive this human body. I tell myself I should start writing, to get whatever I can out into the world with whatever time I have, but it's a Sisyphean task. It's taken me weeks to even get these thoughts down. Accomplishing ANYTHING just seems overwhelming when I'm trying to figure out how I can possibly stand to live a few more hours, minutes, seconds, with the sensations I'm feeling. Those seconds alone are grand accomplishments.
Humans need a Hero's Journey; the beacon of personal mythology that contextualizes the extreme depths of pain and suffering we are able to feel and makes them worthy sacrifices. There was comfort in feeling that I was somehow being forged in fire, but would emerge transformed with the benefit of having gone into the depths. That was worth living for. And it was worth living for the chance to help others rewrite their own tragic narratives and find deep meaning in their challenges as well. It truly felt like my quest.
Internalizing the reality that a happy ending may not be possible has conjured up deep grief for:
*My inability to stop the rapid progression of disease no matter how hard I try and the dismissive incompetence of the medical system.
*The immense financial and emotional cost of attempting to keep me alive.
*Everything I've missed, have been unable to say, and can't do for/with my beloved family and friends.
*Every bit of hurt my illness has caused the people I love.
*Thousands of lost opportunities, my derailed career, enthusiastic plans and projects that never came to fruition and the hundreds of ecstatic hopeful moments about treatments that failed.
*Closest friends I felt were my true “soul family” who completely, or mostly, disappeared over the past couple of years.
*Newer friendships that I wish with all my heart that I had the strength to grow and nurture.
*The fact that human connection is the most important thing in the world to me, yet my body punishes me for communicating.
*The loss of my cherished independence, creativity, intelligence. Over half a life lost to incomprehensible physical agony…this unending limbo that seems to spiral closer to hell each day in a dizzying array of compounding symptoms.
I cannot begin to touch upon the bittersweet concoction of love and grief I feel for my father and Casey, who’ve gone to unbelievable lengths for me. There has been NO greater healing force than the superhuman devotion and unconditional love I feel each day. I have no religion, but this love has connected me to a feeling of divinity and peace. There’s nothing more shattering than the prospect of physical separation from this rare gift. Though I'd much prefer to have felt it for a brief flicker of time than live a long healthy life without it.
I think I've cried more in the last month than I have in years combined. It's all becoming too real.
Marie Louise Von Franz once said “It’s easy to be a naive idealist. It’s easy to be a cynical realist. It’s quite another thing to have no illusions and still hold the inner flame.” There's still a pilot light inside me; perhaps some senseless mechanical evolutionary drive for survival, perhaps a higher spiritual calling…or somewhere in between. I never believed a body could feel like this and not die, no less survive this way for years at a time. I hope if I don't make it out of this alive, the people I love will remember me for who I really was. I hope they remember precious moments of kindness, creativity, courage, absurd humor, hugs, quirky handmade gifts, and comfort through tears. Despite the countless goals my body kept me from achieving I hope I've succeeded in being a good person and been useful in some capacity. This disease may take my life against my will, but for now I'm still fighting. I'm still holding the flame.
As I said, no response necessary, but if you feel inclined to share any thoughts, feelings, etc., I'm SO happy to read them as blurry eyes allow! The greatest comfort is when people just talk to me (and have patience with my replies). Much love to you all.”
“My convoluted journey sheds light on numerous aspects of our current medical system that range from bureaucratic insanity, to abuse, to a kind of Kafka-esque absurdity. My emotional journey could bring great comfort to those in the chronic illness community who feel ignored, invalidated, misunderstood, disenfranchised and alone.
If you're suffering with physical or mental symptoms and doctors cast you off or make you feel like it's all in your head, *know* this kind of invalidation reflects the ego and shortsightedness of the practitioner, inadequacy of medical education, and shortcomings of the current medical paradigm. It is NOT your fault and it doesn't diminish your truth. YOU know your body. You have a right to receive emotionally and physically humane treatment, and don't stop until you f***ing find it! The most valuable discoveries (on a personal AND global level) lie hidden in the challenging work people want to avoid.”