A temporary departure from the intended focus

Panic at the in-home care services termination. Like panic at the disco, but the flailing about is all in my head.

My apologies if this is rambling and incoherent. I’m trying the best I can, but my pain medication dosages were raised in the last few days. Everything in my head is now quite blurred, yet I am still in burning pain. They shoot horses, don’t they?

Anyway, here we go…

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At 4:30pm on July 11th, I learned that Medicaid has decided I no longer qualify for in-home personal assistance because my health no longer requires help. This is ludicrous. My health has not improved. In fact, I’ve been given an additional eight meaningful, limiting diagnoses in the past two months alone. I have to start catheterizing myself every day due to a confirmed hypotonic neurogenic bladder diagnosis. It’s now possible that I’ll need three back surgeries, not two. Additionally, my doctor added around-the-clock opiates to my medication regimen in the hopes of controlling my pain. I’m groggy, lightheaded, and my cognition is greatly impaired. It’s taking me way too long to write this (or do anything else) as a result.

However, Medicaid won’t tell me why they think I no longer qualify without filing an appeal — which means filing an appeal without knowing what the decision was based on. I submitted my appeal on July 12th — via fax, as they only accept communication via fax and postal mail — but have not received an acknowledgement of the receipt of appeal.

My case manager at my health insurance told me the court hearing to decide my case will take place within 30 days. I am encouraged to have legal representation at the hearing, so I’ve been trying to get in touch with my local Legal Aid. The paralegal who operates the phone lines says my case has already been assigned to a lawyer (though I haven’t gone through intake yet, so I suspect this is being confused with older closed cases — an appeal to reinstate my temporary disability assistance and representation for my Supplemental Security Insurance case). I left voicemail for the lawyer and the paralegal on the case on 12th and 14th, as well as email to the paralegal on the 14th, and have yet to receive a reply.

I am more than a little worried.

I want things to be better. I have a real shot at a significantly less impaired life if I can get these back surgeries, but without the income from the caregiving job, I have no way of paying for them. (Several of my providers don’t take insurance and they are the only providers who treat the rare conditions that I have.) The job's income was going to enable me to go cross country to see the medical team who can fix part of my back (there’s no one on this coast with that technology as yet).

We (my partner and I) had been using the money Medicaid paid for caregiving to pay for the much needed services Medicaid doesn’t pay for, because stick it to the man anyway that you can.

I have spent the past eight years rotting away, barely ever able to leave my home, sliding through life on social/welfare benefits, donations, and charm. When I left my marriage, I went on benefits (I had already been unable to work for several years) so I could have support while I got the diagnoses and treatment I need. Now I have the diagnoses but no way to access the treatment. Yet Social Security doesn’t acknowledge/ recognize that some of these diagnoses are real, let alone how disabling they can be, so I’m going to lose my disability case for the last time. This time I had to hire a private lawyer because Legal Aid wouldn’t take my Social Security case; they said they didn’t think I had a chance of winning.

After this current Social Security case is denied, that’s it. I lose food stamps and I lose my pittance of cash income from “temporary” disability assistance. I won’t have the money from my partner’s caregiving to pay my doctors, so I won’t be able to have follow up appointments.

One of my most impairing conditions, persistent genital arousal disorder (PGAD), has waxed and waned in intensity over the past 27 years that I’ve had its symptoms (and currently, it’s really damn bad). It’s partially caused by the annular tears in my lumbar spine; the pain from the tears is constant, causing the ongoing dysfunction of my bowel, bladder, sexual function, and severely worsening back pain. Plus, receiving the neurogenic bladder diagnosis means I have the last diagnostic criteria necessary for an occult tethered cord syndrome diagnosis; that’s also degenerative unless the cord is detethered.

Things are often very shit and complicated on my end but it is truly bad this time around. Without the money from the caregiving job, I have no way of getting the surgeries I need so that I can get off benefits. And ironically, my condition will worsen but the benefits I do have, I will lose.

Unless I win my court hearing to appeal the denial of caregiving services, I lose. And it would be an enormous loss. I’d have to accept that I’m never going to get physically better, only worse, and that I’ll have no way of accessing even basic care for my rare conditions as they degenerate and continue to wax and wane. I’ll lose most of my financial support. I’m scared that I’ve reached the end of my journey.

[Image description: A gif of a white person with short brown hair who is in the interview chair of a late night talk show. The person is speaking while simultaneously lifting and lowering both hands. In yellow font, text reads ‘Take a deep breath and give up.’]

I have (had?) lots of topics planned out for this newsletter, but until conditions improve (particularly my cognition), I don’t know how much I’ll be able to write here. I want my ideas to make sense and at the moment, everything seems overly jumbled.

Some of what I want to explore in this newsletter:

• The ethics of the caregiver-partner paying for the client-partner’s out-of-pocket medical expenses with the income from the caregiving job. Not from Medicaid’s standpoint but from the standpoint of the caregiver-partner/ client-partner’s relationship and its vastly uneven power dynamic.

• When both the system and your body are impairing you, how do you find within yourself the ability to love and care for others? How do you find the ability to show up for others, to be in community with others?

• How can community care provide assistance? To whom should the labor of finding and organizing community care fall?

• If “social” and “welfare” benefits are lost to an individual stuck living in this system, how does that person survive? Not just financially, but as a whole person?

• How can caregiver-partners and client-partners maintain personal boundaries? What’s caregiving time and what’s partner/lover time?

• How can caregiver-partners and client-partners get their needs met that can’t be filled within that one relationship of two people? These needs include sex, kink, affection, love, quality time, touch, alone time/ downtime, hobbies, et cetera.

• If the caregiver-partner and client-partner engage in non-monogamy, what are the relationship agreements that would apply that take into account the power dynamic, the financial disparity, the emotions and desires of each partner, the limitations of the client-partner, et cetera?

• How might possible resentment be avoided if one partner is too burned out to socialize or date and the other partner is able to make connections with others?

• How can caregiver-partners and client-partners best collaborate to have a passionate sexual (if that’s their desired dynamic) relationship, especially if the caregiving has overtaken the sexually intimate times? (h/t to

  redheading
  for this topic.)

• If desired, how can the client-partner continue to embrace their sexuality when their bodyminds are medicalized by the state and medical providers? The client-partner may have medical trauma, over-stimulation, or dissociation from their bodies — how can these situations be approached by the caregiver-partner? How can partners collaborate to address the needs of the client-partner without causing more harm? (h/t to

  redheading
  for inspiring the beginnings of this topic.)

• If the caregiver-partner is feeling overwhelmed, what are some non-individualistic strategies that partner can try to lessen their feeling of strain?

• “If [the client-partner] is constantly thinking about the physical pain, how can [they] allow [themselves] to feel or even want pleasure?” - (direct ask from

  redheading
  )

• When both the client-partner and the caregiver-partner are disabled (or the caregiver-partner is temporarily ill or injured), what are some strategies to navigate different access needs? How can this be approached with assistance from outside of the two-partner relationship?

• It’s said that “an army of lovers cannot lose” (or, “an army of lovers shall not fail” / “an army of lovers cannot fail” depending on who is being quoted). Can a House of Disabled Lovers win? If so, what are we fighting for? Are we fighting for a win in an individualistic society, where the win would benefit one person, or perhaps one household? Are we fighting for a win for everyone, regardless of household? Can we fight for both the individual and the community at the same time; if so, how?

• How can disabled lovers fight for a better world when overly-strained with the responsibility of fighting for their individual selves?

• How can a better world for disabled people be possible when we don’t have the energy or resources to get by day to day, let alone live through a revolution?

Photo by Markus Spiske on Unsplash Image description: a close up of a hand drawn sign on a wooden stick at a protest. Pasted to a piece of cardboard is a white square of paper on which the words ‘Disabled people for future!’ are written in black. In the bottom left corner of the sign is a pasted on blue circle with a black symbol of a person sitting in a wheelchair. In the bottom right corner of the sign is a pasted on drawing of a representation of the earth on fire.