The Way Out
It's a harsh realization: you pull through life with chronic illness, trying to survive day by day, but you are not living.
My "TED-worthy" story that got me into all major news outlets in Israel a while back was a promising one. A young man on his way to becoming a doctor fell ill, succumbing to illness, only to find himself fighting an uphill battle against healthcare, like an armorless Don Quixote poking against a hospital wall.
He is also a hero, a martyr, and a victim of this evil life. He had an "incident" in his army service while saving the lives of others as a medic, defending his country. No word about mental health, no PTSD in this lexicon, only an injury leading to a mysterious illness taking almost a decade of his young life.
He is so empowered by the end of his journey that he not only diagnoses and rehabilitates himself but also teaches himself to walk and talk when he's almost 28. Using this inertia, he helps empower others sharing their bedridden fate and even extends beyond the chronically ill community to empower others to leave their comfort zones, confront their fears, be more resilient, and thrive. He founds startups and NGOs, speaks on the world stage, writes books, and is always doing.
This is a beautiful and compelling story, but it's not the whole story.
Let's rewrite it using the facts of the matter: he joins the army at 18 since he has to, stupidly tries to fit in, and waives his medical right to have a desk job, only to find himself on the battlefield a few short months later. While doing so, he is so self-canceling that he spends his short and precious vacations from the army as a volunteer medic at the Israeli branch of the Red Cross, only to encounter more death, destruction, and trauma. His body fails him; he gets gaslighted, ignored, and neglected. Only a year after being honorably discharged to a society that sees it as the utmost dishonor, he tries to prove himself by using his remaining health to join a civil service by the Red Cross, and finally succumbs to trauma that has led to a massive autoimmune reaction and devastated his body.
He spent years in bed, gaslighted, ignored, and abused until finally, he is sick of his sickness, takes responsibility for his life, and finds a way out. But since he didn't change his core behavior, he keeps finding himself relapsing, only to resurface and drown again.
In my first book, "Revolution from my Bed," I tell my story. It's a sad one with a glimpse of hope. The book ends with the notion of "I am better now, so I can tell you how to do it too." But it's a lie. I failed at home. I didn't make it. I have managed to poke a hole between the world of the sick and the world of the living, only for it to be forcefully closed again by the winds of life. This lack of deep roots in a centered, wellness-focused, mindful mindset and actions makes this wind feel like a light breeze, not throwing me back to a few months in bed every time.
This is not a life. And I, as this young man, don't want to live my life like this anymore.
Not to prove anything, not to show I'm sick so society will finally believe me, use my illness as a cover and excuse, and make poor life choices while glimmering on rare occasions for a bit, inspiring some people, making some positive noise, and... you've guessed it, relapsing again.
I want out. I've had enough. I am sick of my sickness. Rock bottom has a special lair for me, and I'm so deep, I'm crawling out. I am looking for a way out.
And I do believe there is one. Not to maintain illness, but to get rid of it, to have it be controlled by me and not the other way around.
To live life to the fullest. To be present.
To stop having 24/7 pain, anxiety, and countless symptoms. To not be afraid the next minute is my last.
I will dedicate the following 52 weeks to my true and hopefully final healing. I will dive deeper into my trauma and treat it, try to wean off my meds, learn how to be mindful, breathe better, eat better, sleep better, and most importantly, hold a healthy mindset that will keep me healthy for a long time.
I am proud of my contribution to patient empowerment, to the conversation around invisible illnesses, broken health IT and tech, safety, health, and education, but I am not fulfilled. Not because of achievements, but due to the fact that I am not here.
I am showing my face once in a while, only to disappear again into the abyss of my sickbed. I want to get home the second I leave. I can't enjoy friendships or activities. I can barely work. And mainly, I am not happy.
My body is aching; my soul is shattered by the horrors I've seen and witnessed. I'm spending my days avoiding my triggers, which means I'm avoiding the life that might bring them with them.
I need a way out. Will you join me on my journey?