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Good Grief: Disability & Death

The last blog was about the loneliness of disability, or bad decisions, or both. This was supposed to be part 2. Well, I lost my dad this March after the long goodbye of Alzheimer’s disease, which was a small blessing. After my stellar success of the October 2019 ketamine infusion at 90 mg/hr, I had found a balance between my past, present and future, and send him an amazing letter of love, anecdotes and forgiveness. We were both stubborn fools, with a big heart and a high tech brain.

I missed my mom so very much, but was caught up in an neverending battle of keeping my body alive, with rotating caregivers and so far, four hospitalizations this year. I finally settled into a routine, including my beloved swimming three times a week, all in an attempt to keep the neuropathic pain at bay, and my humanity alive. Since March and the draconian lockdown with the closed gym though, I had dragged my body up and down the stairs with my leg braces, an exceptional feat, every drop of sweat the evidence my spirit wanted to live.

In June my gym and pool opened, for a day. Downtown Albuquerque’s economy was screwed, and there weren’t enough workers to financially justify its’ existence. I tried going to another location, but not using my power wheelchair and dragging in my gear and towels turned out to be so exhausting, I needed days to recover from the expedition. It was good, swimming outside at their Midtown location, but without a reliable caregiver, my health and sanity was seriously at risk. I appealed to the manager to have one of their employees comes out to help me, but as helpful as Downtown had been, the Midtown location was a nightmare to deal with.

Various emails, calls, pleas in person had not managed to persuade them to be nicer and just as I was about to file a formal complaint to the indifferent GM and assistant GM, my vivacious, wonderful, creative mom had an ischemic attack. Tuesday July 14 I finally went swimming with a new, reliable caregiver, when my world fell apart. My sister in the Netherlands phoned to say she was found unresponsive, in her pyama’s. I knew it wasn’t good, had seen it in Detroit working emergency rooms. Dead to the world. A goner. If she were to recover, it would leave residual damage to the point she would not be able to speak or comprehend, and she’d need 24/7 skilled nursing care. Pieternel had signed paperwork and voiced loudly she did not want that.

The decision was easy, as far as those go. My heart was ripped to pieces, we had just found an equilibrium, where we had forgiven eachother’s quirks and nothing was left unsaid. There wasn’t a ‘wish I had told you I loved you,’ for I had done so frequently. But we had just started two projects: Pieternel was going to write her amazing, magical memories down, and we agreed on an art project based on two photographs I’d posed for. They were wheelchair nudes, her Parkinson’s medication was helping and beside my boyfriend, couldn’t think of a better person to depict disability and, I want to say ‘sexuality,’ but really, it’s humanity. I look like Velasquez’ Venus in the photographs.

All her memories are gone, all the family members that still lived in her head, all the future events she won’t witness; her grandchildren’s highschool graduations, my PhD, my sister meeting a nice man. None of it will happen, and I understood in a split second, I had lost everything. Literally, I had lost my heart. I am bereaved in a way I can’t describe. I force myself to write. Food is bland, my muscles ache, my soul is ripped to shreds. I want to throw myself over the balcony of her flat, but know my sister would not survive. I have to honor my mom’s heritage, and her soul and I can’t. Not yet. Not tomorrow, when her cremation happens. I want to call my mom every week like we have for years, and hear her laughter, and like the very last time, tell her I woke up without pain for the first time in five years.

I managed, for the first time in three years, to get my disabled body home in the Netherlands, and just had a ketamine infusions. It was strange, worlds collided in my neurons, civilization rose and as usual, I was no longer me, yet this time saw myself through others, and they were witnessing my death. I had just nursed my mother at home, and held her hand when she was dying. My sister and I became mothers to eachother, nurturing through marzipan cakes. Dutch licorice and love. It was a strange way to mourn, two sisters in an apartment and yet that’s how it happened.

The days went murky, our hearts a bottomless ocean of tears, our souls changed. For the better, I do not know yet. Why had I not cherished her exceptional works of art more when she was alive? But the answer to that is simple; I did not learn how to feel till last year, buried as I was under shame, guilt and insecurity. Amidst my mothers incredible paintings and her modest but cozy apartment, we ran into eachother like waves crashing on a beach. We were finally together in a way we could not before my mother’s death, love and friendship blossoming like never before.

The day I arrived from the States, we took out her IV needle that supplied fluids, and after a week, gave her a little medication when her breathing labored badly until finally, her jugular stopped moving. The hard truth is that if someone deserved a few more years on this planet, it was my funny, stubborn, kind hearted mother. Why this happened, I may never find out. But I can understand, for the first time, why someone would pray, or find spirituality.

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