Three new posts, an Anniversary and learning to fly sitting down

Three years ago I came back from the fencing competition where I collapsed. About today I started using the wheelchair full time. If I make it to May it will be the anniversary of when the people working on me thought I was going to die. I was more active back then, and so, ignoring that all the speed limit signs in my body had been removed, I ripped down hills and switchback corners. So when I finally said, “I don’t feel good” – Instead of fainting, I would just, stop breathing. These days, I still go past my limits, but in different ways. I wrote about it a bit in my post on the postcard project.
Plus the post has a kick-ass typewriter.

Right now, I focus on the short term goals. Getting to tomorrow. And getting to Sakura-con, to do the Times Colonist 10K and get to the start line. To get to the finish line. To get to the day AFTER the TC 10K. Then there is summer. Yeah, Linda is unemployed and applying.

She told me she has written a blog post on Sakura-Con on ‘A Girl’s Gotta Fly’ and she would really like you to read it. It is here. I haven’t read it. She just said that if you are confused the ‘paypal’ button is on the er…..right a part way down. I assume that is my right.

All I know is that I am selling books and DVD’s and stuff. And I am fever free (except for 4 hours) for a week now. Next goal: exercise – I am going back to boxing and badminton.

I won a Kodak film contest division about ‘Life in a Wheelchair’, a division not about work or family but the rest. The prize came in a big box. It is unopened.

The winner was the picture titled, Fly or Fall. I said that for me, every wheelchair user has to work out for themselves how they will see and how they approach life from a wheelchair.

For me, it is always flying. When I fall, I drag myself. Even having to rest every couple pushes going uphill it is flying, because I am out there trying. What is impossible? That which is never tried. Getting up the hill isn’t impossible, it just is damn hard some days. Yeah, there are lots of things that are impossible but if I had to do it all over again...I would have ordered the double thick titanium axles. Why NOT fly. Okay, it takes more risk, more energy, more planning, and has a higher probably of something interesting happening (which might or might not involve hospitalization). So where is the down side?

I am not wheelchair bound: I am learning how to fly sitting down.

Cat Visit II: Cats and Wheelchairs, Jasmine, Harley, blood and heat

My apologies for the disruption of broadcasting. The lesbian sleepover went very well, all things considered, producing a goodly number of postcards, and of course the problems of the last day, waking up, “Where is my massage oil?” and “Have you seen my thong” along with, “Do you want to shower first, or shall we shower together in slo-mo mode, randomly shaking the water off our hair?”

There is a heat wave in Victoria, which means I am a prisoner of a small room. The room is with bookcases about 9 feet by twenty but I only sit in three by two feet: right by the air conditioner. Not even a window to see out. Because, for example, when I left that room to take some pictures for the blog, my legs turned purple, as I had vascular failure (my particular brand of Autonomic failure) in my legs, so yes, purple legs. And not only that, once they reached a high temperature, they were covered with Goosebumps as were my arms while my body went into shock. That was in an hour, in a room with an portable air conditioner and a fan. So yes, for all I know, the end is here, riots are going in the street and government as we know it has fallen. Someone cheer me up and tell me that is true, because then the Student Loan people will stop calling me trying to get me to sell my organs on ebay while I still ‘have viable assets’. Or do you think they have a secure bunker deep beneath the earth? That people will wander days to find a working phone for help and when picking it up, they hear, "Is that you Brad Bury? You are behind in your student loan payments, please seek a student loan officer at the nearest decontamination centre."

On Sunday by working hard on postcards I was able to go to the RSPCA Victoria branch, where I met with cats, and with the officer who does the inspections of anywhere that sells, trains or has public display of animals.

There was a shy by very cute 1 year old cat, if that. I got her a stuffie which they have around, and she was quite content to ride along with me for about half of my visit to the Cat Rooms. The cat rooms consist of about 40 cages on two walls, some of which are open some of which are just sitting spaces, then a two room wide outdoor and two rooms of indoor enclosure.

It turned out that Elizabeth (the white and orange cat), and Betsy and Murray (the psudo mother) had been adopted in the short time we were gone. I was a little sad and went to visit the one cat who I had seen a week or two ago, Jasmine. Remember how Jasmine liked to play ‘catch and eat the fingers’? Would she still want to play that? Geee…maybe.
I can’t tell if Jasmine recognized me or my fingers but after we played ‘gnaw on Beth’s finger” for a while she would lick it, which she didn’t last time and I took to be a positive thing. If you remember Jasmine liked to grab, then rip off the head of what she caught. It was a fun game.

So here she is in stalking mode, looking at the finger, her deadly opponent, sizing it up.
Then she pounces and comes in for the attack. Jasmine is just under two years old and is pretty lively. I have the added advantage of having peripheral neuropathy so I can’t feel what is going on except sometimes some extra pressure. I like to think that Jasmine remembered me, or my hand.

This Shelter, due to ‘Victoria being pet crazy’ is the best in Canada and while we thought we were seeing the cat area, the 40 cats we saw were nothing to the 200 housed in the building. These were the ones healing or ready for fostering or adoption. Kittens would go in days, but unbelievably, the majority of people who take kittens from the RSPCA bring them back once they become adults. Okay, this is not like a DVD rental store, okay!

The cats who were let out of the cages were of two types, first were the very friendly kind, who could stand the amount of people going through, like Rose and my new young (1 year plus) wheelchair loving friend I call Jasper. Jasper, seemed to have no problem with my new technology and soon adapted to hiding under it and watching the other cats.

The second form of cats which are let out are cats that it is too dangerous for them to be kept in a cage. This seems a little odd, but it comes from the RSPCA officer. Cats who cannot be fed, or helped in a cage need to be let out so they go find a place to hang out because they simply cannot be caged. So, the super nice and gentle and the near feral, and you don’t know which.

But the problem is that this is not where a cat is happy, anymore than one of us leaving our home likes to be in a shelter. We want a home, and they want a home: Not some place where they can’t have their own space, and people come through all the time. They would visit one another, and I suspect that ones like this who had to be shaved for disease or injury had bonded or made friends with this cat before.

Before we leave Jasmine, I should note that Rose in my lap seemed to have a vivid interest in all the grabbing of my fingers and leaping on me and biting and paws coming in and out of the cage. A real fight fan, I wasn’t sure if she was rooting for me or for Jasmine.

As you can see, the wheelchair and technology seemed to attract the cats with Rose on my lap, Jasper under the wheelchair and now a new older cat checking out my oxygen concentrator.
Here is Jasper in my lap. As you can see, I am still having difficulty with them smelling my fingers, but ones with developed day vision like Jasmine have no problem attacking them and putting her scent on them but Jasper needed to smell the gloves I wore. Jasper is younger so thin and has a white paw and chest tips. Now tell me the truth Jasper, do you love my wheelchair and me for my winning personality…..or because of string?
Truth is that Jasper just LOVED being around the wheelchair period. We have many, many photos where I am wheeling forward and Jasper is just walking underneath the chair. Then outside, all was good until I wanted to go inside, and Jasper deliberately sprawled across the entrance so that I could not go inside. Jeez, subtle much? By this time, the older black cat seen examining the oxygen concentrator and a large dominant black cat I called Thomas with all white paws decided to team up and sort of ‘take over’ the wheelchair, or most importantly....the string.

By this time I was playing with Harley, and yes, that is his name. Harley plays rough and he likes to play with anyone who goes within reach of his claws whether they are just walking by or not. He also likes to play the catch with claws and then gnaw on game but being older the teeth fangs were longer and Harley just liked to play harder. He quickly stopped that moving finger by grabbing it with his claws.
Then Harley came in and took that plaything and grabbed it with both paws, claws out. Then it was into the mouth. There was also the roll-over technique for beheading. Since Harley was a lot larger, I was less worried for my finger but the owners would get lots of beheaded birds, animals, small children? Because this is what Harley looks like in full ‘play’ struggle mode.
At this point I had to stop, and take out my handy ‘Hello Kitty’ wet wipes because it turned out that two of my fingers had some flowing blood coming from them, and two others had flaps of skin hanging off. Let’s hear a hooray for peripherial neuropathy! Here you see me cleaning my hand and bandaging it, with Thomas in the dominant spot under the wheelchair string, with the other large black cat, and now poor Jasper is playing with the footplate and the outside of the wheelchair.
Blood? Well, yes, it turns out that out of ALL the cages there were only two that had padlocks on them just in case someone might accidentally let a cat out and those two were: Harley and Jasmine. Or as the RSPCA officer said, “Oh yes, Jasmine likes to express an opinion!” which I figure means likes to ‘play’ or beat up many of the younger or milder cats in play time.

You may also notice that I am not showing a lot of these cute cats, but a lot of the black cats. And while this cat is a cutie: it may be the one that was attacked by a dog and was waiting for the foster family to pick it up. The sad fact, says the RSPCA officer is that people can’t tell most black cats apart and so the other coloured cats are more quickly adopted, leaving a large amount of black cats, even cute, mild kitten type black cats like this.
If you look back to the picture of me with the three black cats playing with my chair, three pictures up, you will notice that Thomas, the dominant cat, is starting a shoving match with the other older black. Yes, unknown to me, the string from my h.naoto backpack had caused a dominant terrain issue and Thomas was saying, “Hey, this is my space, and I decide where I am going to sit.” It was kind of like watching a playground fight with a bit of pushing and then backing up. Oddly, I kind of thought it was MY wheelchair. Thank goodness Thomas didn’t figure out I thought that or he would have been up to teach ME a lesson like, “You can go, but leave the wheelchair!”

Well, that was pretty much our visit. And until the heat lets up, there isn’t much I can do as the heat causes all of my conditions to increase in intensity. So more TIA’s, more seizures, more headaches, more nausea, etc, etc. But no fear, once the heat wave is over, I will be FREE AGAIN to spread my own kind of…um…presence onto the city of Victoria.

Falling: the opportunity, the choice

Falling isn’t the opportunity, nor the choice, falling often isn’t something you only know you are involved in until you are already there. For me there is falling down physically, falling out of bed, falling while trying to transfer, falling while rolling in my wheelchair outside, falling while doing sports in the wheelchair and falling during and after seizures. Plus I get down, depressed, in a funk. Often falling can be psychological, mental and physical. In many cases, when I have diminished capacity, I sleep better, because I only understand the most limited aspects of what is going around me. People say I am safe, so I believe them. People tell me when to eat, or drink. It is not that bad a life, honestly, when one merely needs to meow if you can’t speak and someone brings something nice to eat. And if they bring something not nice, just turn your face away and keep meowing (No, I’m not joking, I’ve done this. It isn’t a conscious thing, it is just a form of diminished mental capacity).

Then there are the seizures, and the mini strokes. Of which lately there have been many every day. Indeed, so many that it if continues, Cheryl and I are concerned that I will die; my concern from simply hemorrhaging in the brain. Cheryl is more pragmatic: I have a tendency in some seizures to eat my tongue and/or lip and if that is followed by a Grand Mal then the blood will choke me to death. I had three Grand Mal’s during almost an continuous hour of seizures on Saturday night. I don’t know what they look like but the descriptions aren’t comforting.

What I know is this; how would you like if someone picked you up out of your chair, spun around and then released you so you sailed through the air, smashing through things and into the wall. Then they picked you up and THREW you full force at the ground, and did it again, and again, and again, and again, and again. Know how much time that is? About 90 seconds or so: about half of a typical Grand Mal. Or they could slam your head against something for say, three or four minutes, while kicking your ribs. That’s getting to ONE Grand Mal. You are terrified, you are in pain. Now, you can’t breathe, in fact your saliva and maybe some blood is going into your lungs and all you know is that you are choking. There is a froth around your mouth and someone picks you and sits you up and you half vomit/half gag out all the liquid you can. Then you have another seizure. Someone checks to see if you have blowm a pupil, if there is blood spreading in your brain (blood is like acid to brain cells, it eats them and kills them FOREVER). But then high amounts of electricity known as a seizure are BURNING a scar into your brain. It is a scar so strong that they often have to CUT OUT the section of brain where it is to stop the seizures. But you don’t care about that because someone is slamming you against the ground and your neck is spained, and your ribs are sprained, and your wrist is sprained, and your muscles against your spine are ripped, and the back of your head is bruised. And blood is coming out of your nose, or dripping down the back of your throat so you keep spitting it out. And you still have 25 more minutes to go. That’s is what an hour of seizures are like (it kinda sucks!).

So lying there, helpless, I (or anyone) has limited choices but the people around have choices too. First off is the choice to make you feel safe. You don’t need to have a seizure to want or need this (close your eyes, a bit of heterosexuality coming up!). You can have a hard day, or just feel the need to be loved, to be in a space where someone is watching over you. And that is a choice for both people, an opportunity, to trust, to care, to be there so someone you know has a place where they can feel secure. I am lucky to have people who do this for me, otherwise I would just like there, alone. Well not exactly like this, because if THIS was me I would be lying there and thinking, “Hot damn! And hour of thrashing, and loss of memory, fine, I HAVE C-CUPS, NO MAKE THAT D-CUP! Woo Hoo, when I can move I am going to go flaunt this all over town! Haha, no one will be looking at my face for WEEKS! Dude, I’m up here, hehe! Oh, OW!!!!” Um, sorry, took a little fantasy jaunt.

But the truth is that all around us, in society people are falling. People fall. They are falling emotionally, they are falling in confidence, they are falling literally. Yes, sometimes when I fall, people come to help, sometimes, after watching me struggle for over a minute, someone is shamed into helping and sometimes I fallen and people have walked away (“Oh wheelchair, that might be complicated”), certainly when a seizure is involved. Then it is 'Run away, it is someone else’s problem.' No, actually, it is YOUR opportunity. When I was harassed in my workplace, no one stood up for me; when Linda goes in to be demeaned, in her workplace, do her coworkers stand up and knock on the door and say, “I think this is inappropriate.” Or do they look down, like people who are uncomfortable hearing a lesbian joke but just say nothing. Will they watch the person who is falling walk by, their shoulders slumped, trying not to cry, and worry about their own job, or be thankful it isn’t them, or pretend they saw nothing. There are ALWAYS going to be people in the crowd, indeed a majority of people in the crowd who will do nothing.

And SO WHAT? I am not talking to a “crowd” I am talking to individuals. Crowds down read blogs, people do. Individuals who today, or tomorrow, or sometime soon will have a loved one, a friend, a partner, an associate, a stranger who is or has fallen.

So.....what will you do?

This is an opportunity, because if you were a kid like most kids (including me!); I wanted to be a hero. I wanted to save people like on TV. I wanted to rescue people from burning buildings, or find people lost in the forest. And here I meet Cheryl who has done just that and who IS DOING THAT....with me. And yet, in so many ways, I would almost weekly come across someone who was falling or had fallen. A older woman obviously on a limited income struggling to carry the bulk food back, going a few yards at a time. “Please, can I help you.” I don’t know how many times I have carried groceries even now in a wheelchair, helped out. I remember this one woman because she was so grateful (we lived in the UK), “I know you aren’t from around here.”

I said, “Is it my Canadian accent.”

She said, “It is because you stopped and helped.”

What will you do?

I hope that when the time comes, you are a person who can be leaned on. I hope that you are the hero who steps up, regardless of age, ethnicity, orientation or gender. I hope you are MY hero, the woman who cradled my head after I had been thrown from my chair. A few minutes of her life, yet a memory in me that stays when others disappear.

But what if you aren't the hero, but the one falling. Well, for me, lying there, fallen, there are options. Sometimes I do need to rest. In fact this is a bit of a problem with me (the resting) since that night I tried with my single moving digit, a pinky finger, which I had wrapped around a chair leg, to try and pull my entire body to the study, when actually resting might have been better. I could have choosen to let others help me, and sometimes that is a choice a gift that NEEDS to be given. Sometimes trying so hard just starts another seizure.

Accept it, McClung, you are not superwoman, you are not wonder woman! I did not manage to get to the study dragging myself with one pinky finger. I did however manage to move my body a bit so I could then curl my pinky around Linda’s shoelaces to untie them in hopes she would take her shoes off. Because then I could curl my finger around HER foot and SHE could drag me to the study (see, there WAS a plan!). What I am saying is that there is a balance; I could easily say, “Hey, I’ve had seizures, I’m really sick, that’s it.” And spend the rest of the time lying watching TV or having a rub down or whatever would happen if I actually rested (I'm guessing, I don't know what would happen if I rested because so far, I've never taken that option).

But resting is one way, or I could get myself put back in the chair, finish my long blog, which I spent all day doing and then continue for a few hours matching and helping stamp postcards. I didn’t get a lot of postcards finished this weekend, and what I did was entirely due to the help of Cheryl. I did however accomplish another project. And that was due to the help of Cheryl and Linda (who said, “I never believed, even though I was helping that we could do it.”).

Of course, that had costs! Being there for Linda had costs, and I don’t regret those. I have had seizures today and times I cannot speak (including now, and I started this blog with my eyepatch on), and today I have been in bed more than usual. I have not been outside in a very long time. I might look a bit like this. Bandaged, exhausted, on oxygen from an hour after waking up until bed (okay, Linda doesn’t actually let me take the knife to bed anymore!). But I did that so that I could be here for Linda when Linda needs me. Today, she didn’t, or not so much, I needed her more today.

But I wrote that post, one about my fears; I actually have nightmares and altered states where I believe I have been put in a home. I exposed myself and my concerns on the costs both financial and physical of me being a burden.

SharonMV in her comment tody pointed out that my being there, or rather if I was NOT there, if my presence was not there trying to drag myself to the study with one finger while Cheryl watched, then THAT would be a burden. That not blogging, that not making jokes, that not being ME, would burden a lot of people. I had not thought about that until now.

Because of that post, which was just for me about my fears about the last remembered while and the time before that was seen as an opportunity for many people. I don't know, but from Linda it seems that she was contacted and I was contacted by people saying, "Eat!" That they said, "Lean on us, for a bit." That they were heroes. They were determined not to let someone fall; be it Linda OR me. While for me, SharonMV reminded me that greatness is not only in doing great deeds but sometimes in hanging on, in being there, in not withdrawing, in articulating fears so that others can understand the disability experience. That greatness is in reaching out to others, in forms of cards, or postcards, or stickers or emails or in some cases a medical kit of Hello Kitty Goth band-aids.

In life, fathers and mothers strive and struggle to continue to be there financial, phsyically and emotionally for their children. Partners offer safe moments and havens for their loved one; supporting each other through life. It is not the act of jumping from a burning building that is the act of a hero, but the act of putting out a hand. Of saying, come, be with us, we want to be with you, we’ll share our food with you. Of making choices out of the opportunities that come our way. Of staying when things get tough.

One thing that being disabled and being in a wheelchair has taught me is that falling is inevitable. Hitting hard is inevitable. Being down, being depressed, being angry, being frustrated, having to be in bed ANOTHER day is inevitable. But how I choose to view those falls, and myself is NOT inevitable. And how the people around me react is not inevitable. And thank you for that. Thank you for each person who has over the last (insert time period longer than a few days - month/s?) has stepped up to stop ANYONE, not just me, indeed ANYONE from falling...on that day (we can't always control everything, we can stop someone falling...that day. Or we can be there to comfort them after the fall...that day.)

While it looks like I will NOT be doing the 8K this month, unless it is this weekend and I can convince Linda to let me do “just one more stupid thing!” But you know what, I will take up boxing again. In these moments where the pain killers (actually doubling them is helping me a bit!) make breathing only slightly ongoingly painful I know who I am and what I do.

I will box again. I will play badminton. I will go rock climbing (even though I haven’t for over a year and a half). I will find a NEW sport that no one thought anyone in a wheelchair could do. I will focus my will and I will return, no not to the health I had before, but the belief that what Elizabeth F. McClung wishes to do, will be done, no matter HOW many times I fall, or cry before I succeed. I am a living conscious choice. Yes, I have diminished brain capacity (we can talk about that another day) and diminished strength, the inability to heal, and some other minor/major issues. But I do not fear falling, I fear the time I stop making that choice to push BEYOND the fall.

BP and brain problems: "Help, I've fallen and I can't get up!"

I have lay down and not been able to get up. It was light, now it is dark. They say tomorrow may be a storm, so they may not be chainsaws at 8:00 am. I don’t know. I am in the space “beyond.” I do not eat. I do not drink. I sleep. I wake confused. I sleep again.

I cannot remember things. I do not want to be one of these people who says they cannot blog because of the blahs. I do not have the blahs. My heart does not seem to be able to produce enough force to keep my blood pressure from dropping. This raises my heart rate. This used to be called Orthostatic Hypo-tension because it is a sign of autonomic failure when you stand up and your Blood Pressure drops and your heart rate raises to try and compensate. A change of 30 mlb is needed for diagnostic standard.

However, now, I am sitting, I am sitting with Linda and Cheryl, but I am dizzy, I cannot see from one eye. We take my blood pressure, the systolic is 120, then 108, then 95. It is dropping and my heart rated goes up and up 110, but with a heart that flutters instead of beats. The systolic and diastolic are close together – there is no pressure in my veins. There is no pressure to get the blood to my brain. This makes me dizzy and have other problems.

It seems that I now have autonomic failure of Orthostatic (change from a static position) Hypo-tension, except I seem to have STATIC Hypo-tension now as well. I don’t move and my heart cannot account for the change. What is the change? Unknown, some further failure in the vascular system, it appears. Would putting a pacemaker in make a difference. Without knowing the cause (are the veins just all opening simultaneously after I have been sitting still for 50 minutes?), how could a pacemaker compensate. Without getting the blood to the brain, I cannot function. Where do you go to buy a home centrifuge? That would force the blood to my brain.

I am having a time of it, I have pushed myself as hard and as far as I can, and when I figure out how to combat this invisible problem, I will be full steam ahead (maybe I need a steam pump for my head?). I do not know. Truth be told, is that I feel very u-h for the last long while. And I except I will be u-h for some time to come. I do not have Mono, as it becomes harder weekly to do the postcards, and less are done each week. When will I become rested enough to be ill?