Two steps forward...

It's hard to put into words precisely what I am feeling. I had a dream last night (a recurring dream) that I was being chased by Voldemort's army (Potterheads will know that I mean "Snatchers"). I was in danger of being found out and had to apparate from the spot so as to avoid capture. In the dream it feels like I am constantly eluding death.

I know I am not dying, but my latest diagnosis feels more like a death sentence than did transplant.

I didn't have a choice about the transplant. I know that now. Despite the fact that "going on the list" was a legally a "choice" and that I had to "opt" into 1B status, I realize that I would not have survived (eventually) without it. But at the time I was "sold," encouraged, won-over, by the promise of more energy, a new hope to be athletic, and the idea that I could finally, miraculously, incredibly do the things I had so previously written off for my lifetime. I was given hope that I had not had since I was thirteen. I was given the dream of playing sports, actually enjoying outdoor activities, traveling to locales without elevators, no longer needing my handicap placard, and pushing my body beyond limits that I had forcibly given in to ten years ago.

And when the Orthopedist with a God complex sat me down and said you need to stop running, you should not ski, you will likely need knee replacements in the next ten years: I dissolved and ceased to be real.

I don't know how to keep fighting. I am so, so tired. I have been to over 75 doctors appointments this year. If you count biopsies, I have had almost 20 surgeries this year. I literally have no idea how many blood draws I have had. I have reached out to all of my resources, demanded help from all of my providers, researched all possible avenues (four official opinions, three non-official opinions, two Facebook support groups, four possible surgical options, four Instagram e-patients, genetic testing, and all this as a non-medical professional who SHOULDN'T have to know how to and SHOULDN'T have to do this). I don't know how to be stronger than I am. I want to succumb to my sadness and lie in the fetal position, but doing so hurts my knees. And so even in my quest for the most basic, innate level of comfort I am reminded of my worst fears. And I don't know how to escape it.

I am not allowed to binge anything. I can't develop a crutch or addiction because it could kill me. I can't take out my anger and my grief in a substance or a habit or a vice. I can't even become addicted to working out because it could cripple me. So once again I feel trapped in this body that is trying so DAMN HARD to be perfect and good and healthy because it has been shunted by experiences and situations that I cannot help. And as I sit here sobbing and writing as fast as I can I am transported back to thirteen year old me who, having just joined an elite basketball team, who was looking forward to skiing that next winter, was told I couldn't and I never would again.

I am no where near prepared to handle another diagnosis, but moreover, I am no where near ready to accept that this condition could make me more physically restrained and disabled than I was with HCM. It is not something to be celebrated. It is not gratitude. And I feel so sorry that I can't jump for joy in honor of my donor who wanted me to live my best life because I feel that I am once again living a life that its prolonged by the grace of faith and good medicine and not by my own kinetic volition. Because I can't be allowed to have what I really desire. I am afraid of booking trips, or dating men, or applying to new jobs that would rock the center of gravity because some days I feel as though I literally cannot stand.

And so, I write this in such grief and sorrow that I am not in the place of healing and gratitude and monumental, incredible, unbelievable strides that I had so, so, so hoped I would be. Because I cannot and I am not and, for the first time, I truly fear that I never will be.


Currently Listening To:

"Lily's Theme" by Alexandre Desplat, from Harry Potter and the Deathly Hallows, Part II

Potterheads will recall the feeling. It is a packed theatre. You have arrived three hours early just to claim your spot. You sit, fully robed, wand in hand, on the edge of your seat, so far forward that your seat mate has to ask you to sit back: "You're blocking the people behind you!" The final scene from Part I flashes upon the screen. Dumbledore has been buried and Voldemort is retrieving the elder wand from the marble grave. A single, powerful, bolt of lightning erupts from the wand as inside your mind you whisper "They are coming."

As the WB logo appears, you begin to cry. This is the last time you will experience a Potter premiere and this is the last and only time you will experience the finale for the first time: you are virgin to it and it is opening its embrace to you. The violins swell as we pass between the logo, through to the clouds beyond. The camera begins to pan quickly across a black steel lake, rippled seemingly by the pace of the zoom. Dementors surround a fog, which clears to the sound of a single female voice: the castle comes fantastically into view, seeming to blow the fog into the depths of the frame in a breath of air.

The voice not so much sings as chants, like a monk in a monastery, a haunting refrain. It echoes in foreboding rather than space. We happen upon a solitary figure, Snape, outside the Hogwarts castle. He peers into the distance, full of memory, remorse, grief. He looks outward, then down upon the students  he has mastered, walking militarily towards the entrance of Hogwarts. In his gaze we see that he knows the gravity of what is to come. In the ripple of his hair we see the winds of change that have begun to blow within the creaky halls of the ancient place. And in his eyes we see the past, the remorse and grief of what has befall him, strengthen his resolve. The wind ripples almost jarringly real against the continued drone of the lower strings.

The pack of violins begin the refrain we know too well as the quintessential J.K.Rowling font, "Harry Potter and The Deathly Hallows Part 2," comes into view. Now you are sobbing, unconsolably: goodbye childhood.

A harmony now sneaks its way below the melody revealing Dobby's grave, as if tangentially reminding us of the grief of a death of our own pet or small friend, while simultaneously recalling the nostalgia of our shared happiest time. Harry's reflection appears in a mirrored shard, as a speck, a fleetingness of bight blue eyes, comes into focus. The harmony reminds us of a gentler time, when Harry's biggest concern was Dobby's mishaps and not the virtuous elf's fate. We then get a glimpse of Ron and Hermione sitting as a table, deep in thought, deep in apprehension, steeling themselves for what is to come. The violins swell once more, resolving n-harmonically to an impending bass cello, playing devil's advocate to a diegetic wind chime; Luna's first line is spoken.

I implore you to listen to the theme once on its own before watching it in situ with the film. The power of the woman's etherial, yet deeply mortal voice, the languid stretching of the violin theme, the familiar undertones of the harmonic viola all embody a deep and penetrating sense of grief, apprehension, and resolve all interlaced with the deus ex machina of sadness; hope.




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