The caregiver book notes that to those not with a chronic condition, the obsession of the self, my need for sound, for sleep, and other medical issues are seen as self absorbtion. To the person with the condition, it is the basics of survival. I forgot that.The fastest road to getting FUBAR (effed up beyond all recognition) with a chonic condition/disease while on a visit/trip is to forget the obvioust: I have a Chronic degenerative and terminal condition and disease (In fact I have many). And THAT is why I haven’t been blogging.
Because instead of being me: the person who has the regulated medicine, the regulated drink, sleep every 8 hours, more regulated medical drinks – instead I became what everyone here wanted me to be (and what I did too): An able bodied person sitting down.
I can have it all (yet the chains around my ankle say that the diseases won’t let me go that easy).Even Linda was sucked into the fantasy for a day, then two days as I am not too bad, and yet, even the seizures after talking too long, don’t give us the medical the heads up. The reminder that I need consistency and stability, I need others to work around my health schedule; not because I am a control freak or even like it, but because it limits the risk to my health. I did not follow this rule, I did not even remember until three days in and it was too late,
now sleeping three times a day, grand mals every day, a missed nap for an ENTIRE day and having only eaten once (one way the matriarch controls is with food. We did not stay with them so we don’t get food. Linda shows up at lunch, I don’t as I am on the toilet. So I get no food. I was sort of asleep/sort of comatose at dinner for my third ‘nap’ where it is has been four hours and I can’t wake up – I get no food, no one to check on me the whole day. The Matriarch is a care worker). In fact the entire trip I will only have two meals a day for two days, the rest of the time I eat once on two other days and not at all the rest – if I show I up late, (and people on disability time who are not accommodated turn up late) don’t get to eat.I got off the plane swearing I would be in better shape with better reserves when the week was up and it was time to go back on. Linda said we would take every other day off, that health came first. Today we realized she hadn’t once checked to see if I had drunk enough liquids (I don't get thirsty), not the whole week.
Did I want to see the nieces and nephews? Yes. Even though one couple would not recognize the Canadian legal marriage licence
and that I was to referred to only as “Beth” and “Linda’s Friend.” I saw the kids, I played with the kids, and every time we were getting on, it was Linda's mother, who was complicit in the discrimination, would break it up and suggest something else to the kids, taking them away.In this family there is only the recognition of the worth of men. A male cousin who cleans the street will always be more important than Linda, her daughter, a woman who regulates the service within government ministries in her portfolio. This daughter, who now has her previous boss’ clients as just PART of her portfolio job is, I am told, to be a blank slate, to merely do as a good woman does, and smooth things over in the family, to give joy to all, to do nothing but cook, clean, and be a good person if she can’t be a mother. That she has lived on two continents and travelled three extensively is an embarrassment. And the fact that I am there; well it is DIFFICULTY isn’t it, like the cousin who won’t marry (in a church), and has a partner (hetero). Who is introduced single and left to himself to introduce his partner of long-standing common-law marriage.
I couldn’t keep up and so I was thrown out the back. Forget the way they acted or statements towards gays. If on day one there are seizures after pushing a person who says they need a nap at 7:00, and one day two there is a grand mal and other seizures for a pushing me (and I let them, to my own shame) past when I needed to take care of my own health.
Eiki Eiki, who we took along, yes, the plushie got me to remember by asking me "Who are you?" Remember. To remember that every weekend I announce when we are going to do the tasks for getting the postcards done: matching, stickering, stamping, writing – none of these happen in those time frames. But here, I was to keep not to disability time but able body time and I was still pushing myself? Until I collapsed (which of course means no Linda and no food – she was sucked in just as I was). And yet, dragged myself to see more relatives, who kept me out in the sunset, until I was covered with bug bites, hours past my nap time, have six grand mals; including slamming my head against the rocks in the driveway. The child were always protected from seeing me. Of all the relatives, over the days only three stayed, only one actively helped, and she was a person who knew about being down physically. I could not speak and yet I was loaded into the van and informed to arrive the next day once I awoke for a ‘family reunion’ where all the relatives could come and gawk, the matriarch ruling the show.
Perhaps I am mistaken, I would think when I was a teacher, having a student unable to speak or move half their body after ONE grand mal would not make me remind them to make sure and get their home in. After six? Because calls from the matriarch every 20 minutes on how late we were to Linda rattled her into forgetting the medical bag and NOT GOING BACK and thus there was no way to stop the two cycles I went into. I was then back on the toilet, reading the last of the manga to keep the pain away before performing a digital exam (yes, sticking my finger up my ass). If you want to know why it takes four hours for me to have a NORMAL dump and why the first day it took 5 hours and a nap to get the first piece of feces out it is because my body does not produce lubricant anymore. Well, except the blood when the roughage undigested rakes the walls. That hurts. Well, after the exam, at 3:00 am I got emergency medical advice and it seems that the walls of the lower intestine (connected directly to the central autonomic system) and weakening, and that one had, when pushing covered the anus so nothing gets out. The “good” news is that it is NOT fused, yet.
What does that mean, it means I have to try to get back to Victoria after so much work to have a normal…every two day dump, I will be returning without the knowledge if the strength of this wall will return it IN TIME. While other (read very unpleasant) alternatives are tried for a while.
So with a bit of a fever and my panties stuffed with klennex for the anal blood, I went to sleep, to wake and call Linda: already at the ‘family Sunday dinner.’ She came back to help me shower and dress called every 20 minutes by the matriarch
to get loud sighs and ‘you aren’t ready YET?!”I did come. I guess like others, who walked into known death chambers and shooting galleries I didn’t stop and say, “Enough. I want to live.” Amazing how strong social pressure can be. Linda’s father had built three ramps, a clear statement that I was to have equal access to the house. The matriarch had the ramps put aside for ‘the convenience of others.’ We gave our gifts which were a hit. There was of course no card or gift from us though several of the people there HAD received a postcard from the project. And our 16 years of marriage together in August, six legally in Canada? Yeah. Right. Next. Like Queen Victoria, there were no lesbians in this house, just 'good friends'. And when I am dead, I will fade, as though we all met, none of the parents, the parents of my nieces and nephews took pictures.
On arriving we said when we were leaving. At that time, I say I am leaving. The matriarch has the ramp dismantled. Others may need to leave (there are other doors out).
While waiting for the ramp to be created again, I start to go into seizure, already on oxygen, I do, I have a seizure, then another, then I go to the ground, Linda says that ONE person from the 20+ there helps, holds my head
as Linda puts the anti-seizure meds under my tongue. I grand mal/full brain seizure, then another, I am semi-awake, able to hear, and I listen as Linda’s mother, the matriarch, doesn't know how Linda can stand doing it; that while the mother is in caregiving she would never help out her people like Linda does with me, hands on and all (she also illegally sleeps during shifts, but says it is okay as others do it). And then a few comments about how she doesn't know how Linda can stand it 
(with implications that I should be left in a ditch somewhere). My ears tell me she is holding court somewhere right, probably in the kitchen with the mothers and others, a crowd of 10 or so.Linda, the person holding my head and I fight on in the now emptied living room. I stop breathing, Linda keeps bringing me back but I can’t stay conscious more than two or three seconds. She has to use the emergency ambi-bag to keep me breathing. I have another full seizure.
This time when I wake, I can see nothing but I can hear the matriarch telling everyone that what is happening to me is because of my THYROID and how a book she read tells how the thyroid is connected to everything. She is too ashamed of her own daughter to tell anyone that I am married to her, and she was, we found part way through, too …..I don’t know, ashamed, to tell anyone how ill I was. I’m not sick, I’m stubborn. I’m not dying, I’m holding people up from dessert.
So now, except for the one family member who had a TIA with lasting memory and absence seizures who KNOWS what it is like and the person holding my head, I have been reduced to a thyroid problem and an inconvenience.“Aunt Beth,” one of my nieces asks, “why do you sometimes stutter when you are trying say something?”
“Well,” I say, “It is like trying to find a word in a book, sometimes I can’t find the right page right away so I just stutter until I find it.”
“Oh.”
The parents go, “We are going to have to explain that later.”
I don’t know how many grand mals I had, or how often I stopped breathing but it was an hour later when I could breath on my own, one eye open. The matriarch is already deciding who will visit me that night and who will we see the next day. The words, “Get to the airport” have not yet been spoken. I am worried, but luckily, I can’t see much. We go down the ramp, I gripping the wheels and Linda the chair, the rest watch.
Someone still comes to the motel room, one last visit, or second to last, not it will be the last as at 10 pm I finally get my nap. I don’t get to sleep as long as my body needs it but waken to an alarm, waken to pack and then to sleep for 5.5 hours so I can wake tomorrow for a 10 hour day on a two stopper hopper airline flight.
I forgot who I was, and it was fun for a day, to be the Able Bodied Aunt. But then to be forced into the role again and again? After HOW MANY days of grand mals does it take before they get that maybe the naps aren’t me being selfish and lazy? That the oxygen and medicine are for something more than a thyroid condition? We can’t sleep or nap as there are two more calls, from the matriarch, more attempts of control over that last 11 hours here.
I can’t show our pictures here, not that I would but I can’t because it was implied if not stated that the people who read me and my lesbian friends are pedophiles and I was not to show pictures of children to these predators. Yes, thanks.
So that is how I am out of manga, and I am out of here. I wish I had the energy to kiss Linda all the way down main street but just breathing has taken priority.
I only hope that by the time I make it to the airport and on the plane, I have enough of ‘it’ whatever that is to make it Victoria.There was joy, and magic, but those memories fell like petals to the oppressive demands
first from within and then without to always be able bodied. Something I can’t be. And something I suffered, and Linda suffered because I couldn’t be what I’m not.
