Purgatory

My partner won a seat on the board of the HOA. The president from hell, after over ten years of dictatorship over the community, was not re-elected. Our home is still uninhabitable due to mold which, without our numerous HEPA filters, is now visibly growing on the furniture. The smell of the home is so foul that the mold inspector turned around and left. We’re still searching for someone willing to perform cavity testing. Additionally, the city has requested we chop down dozens of shade trees, including several outside our home, because the roots are imposing on the canal that provides water to this scorched metropolis. We are doing all we can to turn things around, but I don’t think we will be able to return to our home. I can’t figure out whether I’m sad or relieved.

Next week, we are talking to our legal team. A month ago, we gave them medical power of attorney and all our home and insurance documents. Supposedly, a lawyer was hired specifically to handle our case. I’m hoping that’s a positive sign. We’re mostly just hoping for an update. We have evidence of mold illness. And we have evidence of property management responsibility. But will that be enough? Maintaining basic functionality health-wise is costing us a fortune, monetarily and in terms of physical and mental energy. I just want to know if someone else can be held accountable. If the answer is no, so be it. If the answer is yes, I can allow myself to start fantasizing about being able to afford a safe home and medications.

Two weeks out, I have an appointment with my neurologist. The last appointment was with filled with terms like
neuro-inflammation, mild cognitive impairment, autoimmune encephalopathy, NMDAR antibody encephalitis, and prodromal stage of dementia. I’ve recently completed the 72-hour EEG, neuropsychological exam, and encephalopathy lab panels he requested. Then, I made the mistake of reading some research articles on PubMed. I hope that, given my full health history, my doctor has some diagnostic ideas other than full-fledged dementia, Alzheimer’s, or Parkinson’s with five years. Because I’m terrified that he won’t.

According to my journal, five years ago a now-former friend said I had become a shell of the person I used to be. I didn’t recognize it in myself at the time, and I was upset. Today, I see it clearly. I feel like I’m stuck in the middle of a vast ocean, feverishly treading water. I’m going nowhere and getting burned out on the way. I don’t know who I am anymore. I used to be thoughtful and brimming over with interesting thoughts and creative ideas, whereas nowadays it feels like it takes all of my energy just to keep my head above water. I don’t even have the cognitive capacity to grieve the loss of my previous self or mourn the dreams withering away in the furthest confines of my mind. I’m passably average because I used to be quite intelligent and I work like hell to fight the cognitive regression. The doctors either think I’m faking it or are satisfied with my mediocrity, but I know that I am capable of so much more. Maybe this is my purgatory–an eternal state of nothingness, uncertainty, and merely existing.

I still have the tiniest sliver of hope that I can become re-aquanited with the person I used to be–the young woman who had the attention to read a book cover-to-cover, the stamina for an all-day hike, the patience to rip seams and start over, and the empathy to connect with anyone. The person I used to be is the kind of person I long to be. And I’m stuck in this place where I can’t reach either.