In these days of covid-19 pandemic, we’re all Dorothys, adventuring through a strange new land full of formerly-unimaginable fears. For someone like Hazel…
In these days of covid-19 pandemic, we’re all Dorothys, adventuring through a strange new land full of formerly-unimaginable fears. For someone like Hazel, who was already mostly-bedridden, the pandemic might not seem to change much, but it does add new anxieties. Hazel is among the most vulnerable, especially for her age group. And today, the fifth of May, is the 13th anniversary of the sudden severe flu-like illness, possibly H5N1 or mononucleosis, from which Hazel never recovered but only got worse and worse. Nevertheless, I have news of progress, thanks to our angels and heroes and docs:
First, some banking progress: Hazel now has a CalABLE account! Here’s to the heroes of legislature who made that possible by creating the ABLE program. It’s a special account to fund her disability-related expenses. It’s tax-free, and there are no fees deducted from your gift like GoFundMe, PayPal, and Facebook charge, so this is the best place to donate to help her.
I know the world is crazy right now, and it’s harder to be an angel if you’ve been grounded by illness or unemployment. It may not be possible to give, but if and only if and when you are “able,” please contribute to her new CalABLE account. Click the link to go to the Gifting Page: https://www.ablegifting.com/CA/DmQy8d to earn your wings.
And now, thanks to doctors, oh my, here’s some physical progress: Hazel is now sometimes able to tolerate wide-open windows, no curtains or blinds, on a bright sunny day! Last week’s phone consult with her doctor pointed up several ways, like that, where we can chart a tiny bit of progress. From always a dim room to sometimes a sunny room. From frequent sleep disturbance to frequent regular sleep patterns. From frequent to rare wishes for death to end the pain. From a lack of hope, to hope.
The phone consultation was her first in many months so it was long, catching up on a variety of complex questions, and it will be followed by new medications, and none of that is covered by MediCal. For anyone new to her situation, here’s a quick summary.
Hazel is mostly bedridden by severe M.E., with trigeminal neuralgia (“the suicide disease”), and her condition is exacerbated by orthostatic hypotension (she gets dizzy when she’s upright), near-constant migraine pain, and PTSD, plus she’s autistic. She is extremely sensitive to light, touch, sound, and smells, so she can’t tolerate car travel, being handled, being in a clinic full of noise and stink. Between being autistic and the hypersensitivity associated with severe ME, Hazel is bombarded by, and her pain is increased by, every detail from receptionists typing and children crying, to the smells of chemical cleaners and the glare of florescent lights. Plus there’s the crash afterwards–the utter bone-crushing exhaustion of ME’s hallmark symptom, post-exertion malaise, lasts in Hazel for many months after any stress. Even a home visit leaves her sicker for weeks. A trip to see a doctor in a clinic or hospital is impossible for her. She has to have a doctor who does house calls and telemedicine.
Although we had help from social workers, therapists, caregivers, and my own doctor, our strenuous efforts to get Hazel treated at home by in-plan doctors only resulted in administrators, at the sole home visit service which takes MediCal, deciding that her case was too complex for them! Hazel was stuck.
Fortunately we eventually found her current doctor, who unfortunately doesn’t accept insurance, but who fortunately works specifically with such complex cases of severe, chronic illness. The treatment has to be slow and gentle, but it is having results.
We had to let up on treatment for a while after moving house, as that alone was a shock to Hazel’s system, but now she’s settled in a better, healthier house, and we can carefully increase the pace of baby steps. Also, the doctor is being extremely cautious around the pandemic, as Hazel is super-vulnerable. Her doctor even canceled a phlebotomy appointment to limit the risk of exposure. I’m grateful for that caution, and the patience it takes for a doctor to treat patients who respond only very slowly with only the smallest improvements.
As always, I’m doing what I can to make Hazel’s life bearable. I’m planting a vegetable garden, and making the paths between plots wide enough for a wheelchair, in hopes that someday soon Hazel will be able to go outside for a few minutes and enjoy it. I’m also getting the bee-yard ready for tenants. A hive awaits and I’m adding to the bee-friendly plantings. I do my best to make meals Hazel can enjoy, and in general create a safe space and pleasant experiences from day to day, to counteract years of trauma.
The doctor called me “angelic,” and, “a hero,” for doing all I do to care for Hazel. I tried to deflect the compliment like I always do, then stopped myself. It’s true that I can’t imagine doing anything less (I can imagine doing more, but can’t actually do more alas!) but “I only do it because that’s the way I am, and because it has to be done,” is no reason not to accept that I’m doing some good.
Thank you for being an angel and a hero yourself, who helps in the ways you can, because it’s the way you are and it has to be done. If you can, when you can, I know you will. This link will bring you directly to a page where you can make a gift to Hazel’s CalABLE account.
Unlike the case with the ruby slippers and home, it only takes one click the to go to the Gifting Page: https://www.ablegifting.com/CA/DmQy8d Thank you! And you, and you, and you!