Hey guys! So here is a month of ramblings that slowly creeped out via voice software or tiny moments of typing. Sorry it got so long! Hope you’re comfy…

Time slowed down for a bit, because I lost my dear grandmother whom I was incredibly close to. I could write a whole email on that, but I’m sure you guys can extrapolate how difficult it was for me not to be there for my family back home or attend her wake/funeral. On the positive side, there was never anything but love between us. I saw her 3 times a week until my body was totally unable to. Our time together was filled with hugs and I love you’s. I will miss her terribly. But she knew she meant the world to me, and vice versa. My memories of her are treasures I will keep forever.

I miss having a home. I’ve traveled with the same tiny suitcase containing a couple of t-shirts and sweatpants for 2 years now. I want so badly to get back to NY, but have to accept it is physically impossible to travel at the moment.

I miss talking, and smiling without feeling like I’ve been shot in the face from jaw pain. And using hands.

I used to express myself constantly through speech and creative tasks. I could console, theorize, laugh…make cards and gifts…work, study…be present in person…DO things to show love. I’m the first to admit that I measured my sense of self worth by productivity/action. My hands, mind and mouth never stopped.

I’ve had to entirely dismantle my perceptual structure and rediscover the basic elements of existence. I was always one to fill out lengthy to-do lists. And now it’s come down to this:

In all this immobile time, I oddly began to marvel at the human body…to think of how many parts of me ARE working…to somehow grasp that because I’m here right now, breathing, with a beating heart…there is essentially more RIGHT with me than wrong on the whole. Unable to DO, sometimes I’m just awestruck by the fact that I can still see, hear, swallow a glass of water, etc…my senses and observation are greatly amplified, which can bring in whispers of bliss amidst agony. And I listen for those whispers.

I’ve also realized that I can give the gift of good energy in spades. Just…anytime…all day…to all of you…whatever that counts for out there in the quantum field. It’s strange to think of “giving” in that way, as a former productivity addict. But there’s something lovely about it.

I’ve had to come to terms w/the fact that although I cannot perform tasks, the essence of who I am…the essence that motivates all those would-be tasks…remains fundamentally unchanged. In each of us, there exists an essence that does not depend on the body. I always “knew” this on a very cerebral level, but it took life circumstances to animate/activate that knowledge in a way I could genuinely feel.

I am able to walk a bit each day now, trying to increase by (literally) 2-3 steps at a time. Already quadrupled my time! Granted, it’s 1/50 of what I did comfortably a few years ago. BUT, my body can still effectively execute the command to put one foot in front of the other. It’s a miraculous thing, isn’t it?! Crushing pain almost completely prohibits the use of my limbs, but I have not withstood any structural damage, and thus there is always hope of rebuilding.

Also, against all predictions, I have managed to gain weight without resorting to intravenous or tube feeding. The awesomeness of this is manifold, because now I can wait on my pending abdominal surgery (maybe I won’t need it?) and increase my chances of surviving/thriving a GREAT deal.

The medical community at large has been an unstoppable juggernaut of negativity, perpetually (and non-chalantly) relegating me to the category of hopeless victim, like cattle to a slaughterhouse. I cannot tell you how hard it is to try to use the medicine of a system that fundamentally believes you can’t heal. It’s like some kind of twisted David and Goliath struggle of consciousness. I know the stone I need in my slingshot is an ability to completely detach from their destructive perceptions. My conscious mind can do so, but conscious thought direction is about 5% of the whole equation. I’m trying to operate as an empowered person in a most outrageously disempowering environment. I can be a fierce little one…but I’m seriously outnumbered and outgunned.

In my naive compassionate state, I believed all life would be cherished and fought for by the world’s professional caretakers. Finding that this was not the case time and time again over the past 5 years shook me to the core. But there was a great lesson: as patients, we must value our own lives enough to fight for them, must believe we are deserving of care. Plenty of doctors I’ve seen didn’t believe I’d be here right now, and if survival comes one grueling step or one spoonful at a time, I will keep at it and keep giving my darling little middle finger (mentally) to the naysayers. *bats eyelashes innocently* Strange to be simultaneously such a softie and such a punk at heart. However, I think we sweetie-punks out there can be fabulous agents of change. 🙂

A couple of you have seen this, but here’s a clip I wrote to my doctor before the Stanford team conferenced my case:

I’d like to confide in you about something I believe is of crucial importance: faith. There are thousands of cases in which illnesses far more severe than mine went into spontaneous remission. The one common factor in all those cases is BELIEF in healing. Belief changes biology.

At this point, outlook is every bit as important…if not more…than any medical treatment we can try. From the bottom of my heart, I ask a profound favor of you and the team: treat me like I can be miracle case.

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I wanted to make this and wear it to the office:

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I waited…and waited…and waited

…it didn’t work.

Having no further idea what to do with me, not wanting to repeat the ketamine despite the fact that it was botched (b/c it messes up their treatment statistics, no doubt), they told me they couldn’t treat me because I am underweight. Oh yes, they won’t treat me for pain, due to weight I lost…because of pain. The doc said if I gained half a pound a week for 4 weeks, he’d consider medical treatment. I did him one better by gaining a full pound a week (for a seemingly impossible total of 10 lbs in recent months!). When I called back, the nurse said they still refused to see me and simply brushed me off with a higher weight goal (one that is entirely inappropriate for my tiny frame).

They told me they’d find me a therapist, and that was all. Just because…it would…get me out of their hair, I guess. They refused to even treat my jaw or tailbone which would, you know, actually allow me to TALK and SIT in a therapy session!

I waited again. I called. They then said it wasn’t their job to find me referrals and I was on my own.

And here I am.

My heart breaks for the injustice of this system. Before this all hit, I always just kept going. .. Kept trying to study, work, help people… As if sparing others from harm, making them feel loved and protected, crusading wildly with palpable empathy, would make my own body heal.

Damn, do I wish that had worked.

I have no problem with the idea of therapy (in fact, I’m all for it, and would love to try it out)…I have a problem with bloody obvious cop outs.

I’ve had my moments of intense stress and anger, being chewed up and spit out by doctor offices. But I can’t let it consume me. I must translate it into fuel and momentum. When something can induce that kind of reaction, produce an emotional charge of such magnitude, I know I’ve stumbled upon an educational tool. It helps me learn exactly what needs to be fixed and how.

When I get to the other side of this, I will dig my heels in with the toughest cases and NEVER give up on them so long as they wish for my help. There is a little pilot light in every person trying to heal, a tiny life force that burns in the core and strives for recovery. In horror, I’ve watched the medical system, for myself and many others, nearly snuff out the tiny light that should be nurtured and fanned into a flame.

I have no answers right now. I just have to try…and trust, and believe. Armed with that spark of life force…and the great love of you guys (which is better than medicine…you are my life savers!), onward we go…

Please update me on YOU.

Love and miss you all,
Dana