Monday, July 06, 2009

I am not AB: how easy to forget. And some 'family values'

I was stupid. Assuming people would get disability time, assuming that I was going to the same sort of protection and care as I had at home. 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.”


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.


SharonMV said...

Dear Beth,
I was afraid of these kind of things happening to you. It's very hard to keep control in many family situations. Of course you want to be up & participate and Linda wants to have that experience with you. That's why you have to learn to say NO & say it early. NO to the demands put on you and NO to yourself when you think you can do it, but know the cost will be to great. Even with a less - biased family, the abled people simply won't understand. And it's hard for Linda, as this is her family - not only does she love them, but she is sucked in by family dynamics & the long term conditioning.

That is why I counseled you in my post before your trip to look after yourself first, etc. So many times I had to limit time with family & set up the situation beforehand. And trips are hard, you don't have your usual environment,or a regular schedule, take all your meds at the right time. Dennis would have definitely gone back for the pill bag (as we call it). I always had it with me, either in the room or in the car.

It's no fun spending your vacation on your own in a motel room. I hope you are getting the fluids, meds & nourishment that you need and are able to rest.

When are you coming home? Please try to rest up for the flight.

Love, Sharon

Kate J said...

Oh Beth, Beth.. I'm SO sorry to read once again about a total lack of understanding and consideration on the part of members of your family - I bet the kids were more understanding and accepting than the adults, who should have known better. And I was imagining you being cared for, pampered, loved...

The attitude of her family towards Linda does seem strange, too. She obviously has a fairly high-status job and I would have thought that was important. But, however they put her down and ignore her, I bet when she's not around, they boast about "Our Linda, you know she has a really good job with the BC government" That's how it always worked with my family, at any rate.

So, after wishing you some peace and rest with your family visit, I'm now wishing you some peace and rest back home. At least, I hope the demolition work has finished.
Love & peace

Lene Andersen said...

It's so lovely to forget once in a while, to pretend you are who you used to be. And then you pay. And pay. I am sorry the consequences were so hard and that the family exacerbated those consequences. That line "I’m not dying, I’m holding people up from dessert" really said it all. I can't imagine what it's like to be denied like you and Linda were - well, I can a bit, thanks to your description. Fer fuck's sake...

Neil said...

Oh, Beth. I was hoping that Linda's family would be more welcoming than that. Or was it only the Matriarch who caused the hassles?

I'm sorry that you had a bad trip; sorry that more AB people seem oblivious to reality.

The kids sounded okay, though. When they asked why you stutter, *I* would have simply told them that it was because of brain injury from strokes. THEY would have handled the truth okay, and would have been better prepared to Get It next time they run across someone with disabilities.

I hope you can deal with the flight home, dear. And Linda?: extra hugs for YOU, 'cause I'm betting you'll be upset and embarrassed by your family too, now.

Love and zen hugs to both of you,

yanub said...

I have several things I want to say, but not the time at the moment to say them. And for that--needing to get out the door and being able to do so today--I'm grateful. I will find time later today to write you more supportively. Well, as supportive as I can be. I just want you to know that I am thinking about you.

Elizabeth McClung said...

At the end of the day I was the stupid one, I needed to learn how to say "No!" and say it early and often. The fact that all trip with Linda had gone with the planning around my condition would suddenly change, I did not anticipate, but I think I should have. The nieces and nephews were very nice and very friendly and it only cut daggers a bit when the one went to Linda, "It is REALLY nice to have a friend, isn't it" (she is like 5 or 7 so no double speak) - she meant that she liked me and wanted Linda to know that she thought her friend was fun. But that is all I will be, the parents were sure no pictures were taken so I guess like being blacked out of the family bible that hurt a bit.

As for the rest, I did have some great moments, and some good talks and I now know who IS worth spending my time on in terms of postcards (the kids!), as well as which adults to email.

I said I was exhausted, Linda said this morning, "That is becuase it was 50 to 1!" - I said I didn't remember the 50 and she said, "My mother counts for at least 3." haha.

Elizabeth McClung said...

Sharon: Yeah, no fun spending your time alone in a motel room - so any post recovery tips to getting back to my routine and reserves as soon as possible?

Kate: The cultural history place males as important and females and people who cook for males, that is what the matriarch's mother did, that is what she did and when Linda got her degree, she said, "Education isn't everything, there is family" meaning, 'and that is what you should do!"

FridaWrites said...

We should be able to expect more understanding from family than from others, because they know more about us and can see for themselves what happens. I experience unreasonable expectations from some other people as well--and also pay for it, though the consequences are not as dire. Neither of us are unique in experiencing this--sick and disabled people everywhere experience such--people may understand the general schedule but not understand why someone can't push themselves a little more for a few days or a week. It is very easy to get caught up and do too much and not be able to stop the tide of consequences.

What does give me hope in humanity, though, is that Linda's dad built the ramp and that another relative stayed with you during your seizures.

One Sick Mother said...


Linda didn't suffer because you couldn't be what you are not. Linda suffered because her family could accept what you ARE. You are blameless in this.

Please don't accept the guilt due to others.

David said...

Oh, that sounds horrible. I am hoping that your return trip goes okay and that things improve for you when you are back home again. I will be thinking of you.

Victor Kellar said...

Sorry to hear about the negative parts of your trip. Sorry to hear that people have such a difficulty understanding you are sick; you don't really need to know HOW you are sick, just that you are, and what they need to make you more comfortable

Family. Sigh. Collette and I have great families but there is always an insular family culture and even wordly intelligent people become so tightly wrapped up in that, that they lose sight of the larger perspective. I know this isn't really an option for you, but I find that family situations are best managed with a judicial appliation of alchohol

Aviva said...

Oh, Beth!

I can't imagine how much it must have hurt to be dismissed like that, a "friend" and nothing more. (Not to say that friends aren't wonderful things to have, but a partnership like you and Linda have is so much more.)

And it boggles my mind that the Matriarch and others could see you hurting and having seizures and being exhausted and be so cruel as to not try to help and accommodate you as best they could.

Yay for Linda's father who built ramps for you, a very caring and loving thing to do. But I don't understand at all why they had to be moved (other than pure meanness on the Matriarch's part). Able-bodied people can walk up and down ramps; they do it all the time.

I know you don't know me at all, but I wish I could hug you and offer more support.

My health problems are nothing compared to yours, but the last time I traveled (two years ago, a couple months after getting sick), I ended up in the hospital for 8 days after a 5-day trip to my inlaws. They were much more accommodating than yours, but they still didn't understand (and still don't) how much rest I needed and how even things like conversation could exhaust me. (Heck, even just being around other people's conversation can exhaust me.)

I recently survived a weeklong invasion from my parents (which I can't really blog about because they read my blog and it would cause massive family discord if I wrote about it negatively), and I'm still recovering three weeks later.

I hope you're already back to a schedule that works for you, or will be very soon. And that you're feeling better soon. I'm so sorry that it was such an awful experience. But I love that you were still able to take pleasure in spending time with the kids (even if you didn't get enough of it).

Raccoon said...

Tell us how you really feel...

I can definitely understand over doing yourself. I've done it, more than once, myself. You want so much to be involved, to be "normal," that you forget that it's just adrenaline, excitement, that's keeping you running.

And then, when you crash, people wonder why you aren't being sociable.

And, of course, with the Matriarch (unintentionally, I'm sure) rubbing it in to your face that you aren't "normal" and that you are not a "real" member of the family...

I'm guessing that she's more used to chronic, relatively stable, clients then someone who needs actual medical attention.

But, now the good thing: you're headed home! Back to your routine, back to your comfort zones. And, when you do get back, maybe take a couple of days and rest?


wendryn said...

I'm so sorry to hear it hasn't gone well and that it's so hard for both of you.

Families are often a pain in the *ss, and adding to that the fact that so many people don't know how to act like normal human beings around non-ABs leaves you in a bad place.

I hope the trip back isn't too bad, at least. *hugs*

cheryl g said...

I am sorry that Linda's family were not willing to make the attempt to understand and accomodate your disease. I am also saddened by the homophobia.

I do know there is a neice and nephew who will remember the visit with their fun Aunt Beth very fondly.

I am glad you had some good talks and good moments. I am more glad that you are home again where you can stick to your schedule and rest, drink and eat as dictated by your needs not anyone else's.

Elizabeth McClung said...

Yes Raccoon, I will try to rest, honestly this time, I just need to first.... (Ack, why am I being beaten down by pillows?)

I made it home and only like 3 or 4 siezures and a some passing out later. The Reynauds, it went to the biceps and then stopped, though my body went into shock a wee bit with the goosebumps and overheating simultanously but that was only at the end, the last hour, so all good.

Demolition is NOT done - I am rooting for the house - this is obviously the THIRD pig's house, the one that CANNOT be knocked down by any means! However there is an office on the street to store tools - somehow the site has become a parking zone for heavy equipment. We missed a heat wave but the apartment was 10 degrees too hot (in Cel. so 18 degrees too hot, so lots of air con). I have napped and can write complete sentences with run ons and elipses....and semi colon use; done incorrectly.

yanub said...

Hey, you got back home before I got back to comment!

I had a long comment started, and then work intervened, so I no longer have it nor remember what I was going to say. I hope it wasn't anything smart or witty, since you are now stuck with whatever I am scraping together at 2:30 am.

Linda's family--well, they do sound like the salt of the earth type. And where you find salt in the earth, nothing grows. OK, probably some sort of bacteria, but still....

I can see why Linda got the hell out of Rock Ridge.

You had every right to expect that your medical needs would be understood and accepted. Linda's mom having the ramps removed, as if a ramp is an inconvenience for those who can walk, shows it wasn't just inconsideration. It was passive aggressive anger.

And how malicious! Of course, the temptation to pretend to be able-bodied was strong. You've been wanting a vacation from being sick and dying, and here was the opportunity. Well, more like the importunity. But still, I can see why playing the role for a couple hours was too tempting. How were you to know it was a trick used by a malicious careworker to set up punitive measures as enforcement for "normal" behavior? That the demands would never end? Linda's parents have been fairly OK from afar, so you had your guard down.

And how insulting, to insinuate that you are some sort of pedo! I understand and approve of not putting children's pictures on the web. But whatever makes anyone think you would slap their pix up? You rarely put up photos of anyone but yourself, Linda, Cheryl, and random squirrels. Anyone who reads your blog can see that!

Ummm. I've lost track of where I was going. But I haven't lost track of you. I do care. May you get some refreshing sleep, construction be damned.

SharonMV said...

Dear Beth,
Glad you made it home, sorry about the demolition still going on. It's good that you had some time to visit with the nieces & nephews. Please rest now. No postcards for a couple of days please.


Kathz said...

What a horrid time for you and Linda - but it sounds as though the children who enjoyed your company will grow up to be more sensitive and caring adults. I'm glad to hear you're back safely and sorry the work isn't done.

I shall find it hard to post comments for the next few days - I recently heard of the death of a very good friend and am struggling with all that must be done. I send love and best wishes and will be in touch again when I can.

rachelcreative said...

Being able to say no is so hard- especially when you want to be just slip into being normal.

I did a drawing some time ago with me in a bubble - because as long as I'm in my own world I can rub along ok. But as soon as I go out into the big world things start to come unstuck. Not just because that world isn't geared up for me and my pace, but also because sometimes I want to not be the ill one.

I knew this but I forgot. I forget over and over. So don't be too hard on yourself or Linda for falling into the trap too. Sounds to me like you both did the best you could do in less than ideal circumstances.

Whatever the adults say or do, they can't take away the memories and feelings you created from your nieces and nephews. That is a gift you gave them - unconditional kindness and fun.

I know the price of the trip is going to be high, has already been high. I hope you can lay low for a while and that things settle and better service resumes with your bowels very soon.

I got a postcard from you today. A beautiful wonderful postcard full of art and caring. I love it. Thank you.

Aviva said...

I just wanted to pop back in and say that hours after reading this post yesterday, I was still so angry about how you were treated and the pressures put on you that I had to tell my husband about it (in more detail than he really wanted but still :-).

Sigh. I just don't get it. I don't get the homophobia, the refusal to acknowledge their daughter's relationship and marriage of so many years. And while I understand how a healthy, able-bodied person might not entirely understand your limits -- I don't even understand my own limits most of the time -- how can they ignore the evidence of what happens when you push yourself too far?

It just seems so ... hurtful. And while I want to say that families just don't act that way, I know from personal experience that sometimes family can be the most hurtful of all. :-(

I'm still so sorry you went through all that, and I'm glad to hear that you're home and feeling somewhat better. Take care, ok?

Dawn Allenbach said...

I just don't understand some people. It makes me angry, so very angry, to read about how you and Linda were treated -- and you being too sick to defend the both of you. I'm doubly disgusted at medical professionals who profess to know EVERYTHING about what's going on with others. Doctors with far more education and experience don't know everything that's going on with you, so how can she? Grrrrrrrrr!!!

Kids are wonderful and understanding and accomodating -- until adults get hold of them.

I hope you're getting everything you need to have a safe trip home.

Denise said...

What BS! It is hard not to get caught up in old/bad family dynamics, especially as a guest who wants to be a good guest. The Matriarch's complete lack of understanding and sympathy is something I find disconcerting and horrifying, especially since she is a care worker.

I'm glad you're safely home where it's easier to stick to the schedule you need in order to recover from the stress of traveling and family relations.

liz said...

Sending hugs and love to you and to Linda and hoping that karma bites The Matriarch so hard in the butt that she can't sit down for months.