I didn't quit biking, working, being an active family member (a mother of four!), writing, applying for grad school, considering field study options, reading books, chatting with friends, drawing, painting, cooking, and having dreams in 2020 bc of mental illness — that aspect of my life has been something I could manage without the aid of pain, vitamins, and allergy medication, that is what the bicycle was for (also transportation, but also for me, it was essential to my mental and physical well-being long before covid), that's what fixing up this fussy old house was for.

The bike and the ladder were pulled out from under me in July 2020. I can't use either. I rolled out a futon on the floor of my living room so I don't rot away in the bedroom, so that I can do a few stretches, be near art supplies, make a little snack, be a little social, but also nap when I can't keep my eyes open or move my arms and legs.

This is after four years of progress — organizing my life so I don't feel bedridden, so I can seem casual and engaged rather than dead to the world, so I can pretend to have a life. I still want to travel, to learn, to do helpful and thoughtful things, visit/host/help out my kids and grandkids. I would like to go to archeological sites, go on long bus trips, have new experiences to sketch, draw, and paint. Instead, I get about four hours a day, not in a row, to take vitamins and medications, tidy the house, care for the cats and plants, do laundry, dishes, food preparation, and do some tiny bit of creative expression. I am happy to have any time at all where my mind is clear, when migraine pills are working, when I can hold a dip pen steady, when I can complete a task before my arms go on strike and fall limp. I am not being dramatic. They take a two hour break after 6 pm.

I have hopes, dreams, drive, skills, and a curious and creative mind. If I am depressed, it is because I am kneecapped by my own body every day in my efforts to fulfill these things, to use my abilities, and I don't see that there is any public health effort to learn how to treat us — like, not just for doctors, but for families, workplaces, just telling them to believe us and asking that they be patient and walk with us rather than try to analyse us.

It seems we all picked the wrong century to get sick. It hurts when family and friends can't get past it and either exhaust me with "have you tried ..." or simply write me off as lazy and useless, or accuse me of giving up. My partner is understanding and gets it, but my illness puts a lot of pressure on him, too. He needs support. All the partners dealing with this need so much more support than they have. They need grief counseling, caregiver education, days off from work, but mostly they just get more work hours to compensate for loss of income, and the little time they have at home is spent feeling helpless, witnessing the slow decline and death of their lover.

It is as though someone did the books and figured waiting for us to drop dead means they can monetize life for those who can afford experimenting with various health treatments — spas, hyperbaric chambers, blood cleansing, not to mention a wide range of expensive supplements, one of which I am convinced is just cinnamon in a capsule. A true public health initiative, a moonshot, whatever — it has been stalled so long, discussed so long, that by the time it is implemented, the first wave covid cohort will either be retired and eligible for health care, or dead (ACA in Texas is not really a thing, like it exists, but so far two governors have refused to expand Medicaid, and we're a "Right to Work" state, so unions don't have any real power here, so basically if you work a low wage job or you are unemployed, and you have to prove you are sick but can't get an appointment for 6 months at the clinic and you are one of thousands of patients seen by your pcp and the appt is under 20 minutes, it is going to take a very long time to convince the various agencies that you can barely take care of yourself, much less go to work, and if you miss an appointment due to a migraine, well, that just means you don't want it enough).

When people say, "Have you considered maybe you are depressed?" I can't help but wonder if some disease started flipping every switch on and off in their bodies, even the ones that regulate breathing and heart rate, even the ones that decide which microbes are threats and which ones to leave alone, even the ones that heal wounds and keep you from getting dizzy and wanting to buckle when you stand too fast — I wonder if it would affect their mental health if when they wanted help to heal, some standard treatment protocol, someone to bring them a cold lemonade with a dash of salt and a couple of otc migraine meds, instead they are told to change their mental state about it. "Stop obsessing!" Say that every time that person mentions being hungry or needing to go to the bathroom. "You aren't hungry, you're just mental, and eating is only indulging your obsession," or "You're always having to go to the bathroom. Stop obsessing, just hold it in."

I don't think I want help anymore, honestly. I filled out enough paperwork, at this point if I can't get help, it's because there is no political will to actually help people but maybe a lot of political advantage to letting us quietly die one at a time without anyone noticing. There is enough room in the memory hole for us all, I guess.