Friday, June 21, 2019

Out of my head

   I’ve been in the hospital. Again. 
   Actually, I went two times. Once, I went to the E.R and was sent home.  Then, I went again the next day and was admitted. 
   For over two weeks. 
   That’s not all.  I don’t remember either incident, and I don’t remember much of my stay in the hospital.  Just bits and pieces of it. 
   For two or three months – actually, since shortly after I began staying up in my chair all day and going out on my own in my chair – I had been getting numerous headaches.  This was weird, because I haven’t gotten many headaches in my life. At first, the pain came when I would go over a bump, then it started becoming more constant and then more severe.
   It turned out that blood was going or leaking into my brain, which was causing pressure and thus the pain.  It is a mystery why this happened.  I hadn’t hit my head or had some trauma.  In any case, I guess Tylenol and Aleve were no longer cutting it, and I landed in the hospital towards the end of May. I eventually had surgery to drain the blood from both sides of my head. 
   I say, “I guess,” because I don’t remember much of this period.  I remember some friends coming by and the woman who came and asked what I wanted for breakfast, lunch and dinner.  I remember eating a bud veggie burger, and I remember joking that the bags hanging from my head to collect the blood made me look like Snoop Dogg. I also remember a very vivid dream in which I was taken to Orlando or Cape Cannaveral to watch a production or the preparation of one.  Perhaps this was when I was in surgery.
   Otherwise, this entire period is pretty much a blank. Several attendants have told me I’d be perfectly lucid one day and then talk nonsense the next day, saying things like my attendant was hiding in the restroom. One attendant told me we watched television and laughed.  Another attendant has said there with one night when I kept spitting up vomit. 
  Maybe it’s for the best that I don’t remember any of this.  But it’s disturbing that nearly three weeks of my life are a blank, are missing, gone. (And, as it just occurred to me, so much for going to the year-end high school music and watching the Tonys.)
   I have now been home for nearly two weeks, which has been wonderful, but it has not been easy.  My headaches have subsided, but my head has been playing tricks on me.  I have trouble focusing and sometimes thinking. The other day, I was going through a pile of mail, paying bills, filling out forms, and I felt my head really straining – and also realized the seriousness of what happened. I find myself grasping for a word or a phase like “cutting it,” in the above reference to Tylenol and Aleve or having to hunt for a letter on the keyboard.  I am having to reorient myself and understand that it is late June, three weeks later than it feels like. 
   It occurred to me the other morning that it’s a bit – a tiny bit - like when I had my spinal surgery two years ago and found myself far more disabled. It is alarming that I’m experiencing these difficulties with my mind, all the more because my head has always been my biggest asset in being disabled, the thing I could rely on when I couldn’t rely on my body.  (It doesn’t help that I’m having attendant shortages and shifts, making me feel unstable, and that a nurse is coming daily to give me antibiotics through an I.V, for yet another U.T.I – these are fast becoming the bane of my existence - which makes me feel like an invalid – and which means I can’t go to my outpatient therapy.)
   But I’m feeling more on top of things, less fuzzy, than I did last week, my first week home. Last weekend, I got rides to and from a movie and meeting, and I did fine.  I went for a short stroll on my own and had no problem.  I’m still planning to go north in three weeks to the Bay Area, where I’ll see family and friends, at to attend Pacific Yearly Meeting, after two years of not being able to do so, in the beautiful, golden hills of rural Marin County. 
   And I’m writing this.  Not only am I able to do this, but I’ve found that doing this helps to calm my head and regain some focus.  I will say again that I’m happy to be writing and posting and that I’ll continue to do so when I have something to say (I may write les over the next two or three months, what with the trip and heat) and am able to. 

Thursday, May 23, 2019

The system's not broken - well, not completely

   In this time of political divisiveness, when everyone is sticking to their ideology and Hell-bent against any compromise, when the reds are evermore redder and the blues keep getting more blue, when nobody can agree on anything – except that they can’t agree on anything! – there is one thing that everyone loves to say and that is that government doesn’t work. 
   It has always been popular to say this.  You always hear people grumbling about nothing getting done and taxpayers’ money being wasted and pledging to “throw the bums out.” This, in fact, is why, either because people got fed-up and decided once and for all to really throw the bums out and try something completely new or because people got fed-up and gave up, Donald Trump was, to everyone’s shock, including his, elected president. 
   Well, I’m here to tell you that government does – or can – work. At least when you take baby steps or, more to the point, deal with (or start off with) little, local stuff. 
   I have written recently about going out in my chair on my own after two years of not being able to do so. In venturing out, I have found a route that is safer and more practical with my decreased ability.  However, there were two rather significant bumps along this route that were difficult or impossible to negotiate in my chair.  One was an uneven sidewalk path between the end of a cul-de-sac and another street.  The other was a lip on a curb-cut that rendered the curb-cut barely a curb-cut. 
   I decided to send out an e-mail to the city and point out these problems.  I did this on a whim, wondering if I’d get a response, much let get them remedied. 
   Guess what?  Within a week or so, I got a response, not only thanking me for my e-mail – about all I was hoping for – but also saying that at least one bump would be paved over until there could be a more permanent fix.  What’s more, the guy asked if he could meet with me so that I could point out the insufficient curb-cut.  This turned out to be unnecessary, and, on subsequent trips along the route, I was quite pleasantly surprised to find both bumps paved over for now. 
   Wow!  Not bad for the no-good, do-nothing government! When I asked for something to be done – even if something could be done – something was done.  With a promise that more would be done.  What’s more, I was offered a meeting. 
   Yes, it was little stuff, baby steps – literally, two small (not-so-small) bumps – but I was heard.  And I was actually helped. 
   I felt like I was getting something done. It was empowering.  Kind of like what our democratic form of government is supposed to do.

Friday, May 3, 2019

My balancing act

   I have gone to the hospital four times in the first four months of this year.  Three of these visits were only to the emergency room, and one, when it turned out I had sepis stemming from an urinary tract infection, resulted in a week-long stay.  Two had to do with my g-tube, and two were occasioned when my urine wasn’t draining through my catheter. 
   No matter how you parse the numbers, this is a sobering, even dubious, record, a lot of visits in not a lot of time.  Indeed, it averages once a month.  I have joked to friends that there should be a room reserved for me in the E.R. 
   It makes sense, then, that I’m struggling more and more with balancing what I call my “medical life” and my “social life.” My medical life include these visits to the hospital as well as various doctor appointments, therapy sessions, having to be turned every 2-3 hours when I’m in bed and to be given water and medications through my g-tube at certain times throughout the day and night and other such things directly pertaining to my body and health.  My social life includes just about everything else and pertains, one might say, to or more to my mind and likely my soul. 
   As I get more and more active, staying up longer in my chair and going out more and doing more things like posting here after 2 years, my medical life feels more and more of a bother, intruding on my social life.  Increasingly, I feel I’m balancing these 2 lives I have, and, increasingly, it’s a real trick. 

Friday, April 26, 2019

All of us means ALL of us

   I recently went to a talk sponsored by a student group at the colleges here.  Two things struck me when I saw the event listed.  One was that there is a disabled student group at the Claremont Colleges, which, at least in my mind, have not been known for being disability-friendly (although I have seen more ramps, automatic doors and the like installed in recent years – perhaps spurred on when a guy in a wheelchair I know sued one of the colleges the day after he graduated for being inaccessible).
   The other thing that struck me was the name of the group: the Disability Illness Difference Alliance. 
   Really?  Why is illness in there?  Haven’t I finally sloughed off the illness title, deciding that that I can stay up in my chair and that I wasn’t sick after two years of spending much of my days in bed? As I stated in a recent post, I was sick of being sick.  What’s more, isn’t the problem with being disabled is that we are seen and treated as sick, ill. What is “invalid” pronounced differently? 
   And “difference?” Come on! They might as well said “special” or “differently able” or – remember this, anyone? – “handicapable.” This group had some catching up to do.
   But maybe it’s me who needs some catching up, some shaking up in regards to the disabled and where they are or should be in society.  The talk by Lydia Brown turned out to be a much-needed reminder, if not an eye-opener, for me. 
   Ms.  Brown is a disability activist and a lawyer in Maryland who has autism.  That was a wake-up right there.  I was expecting her to be in a wheelchair or to maybe be deaf or blind.  I was expecting her to have a more obvious, physical disability (I also thought it was odd that I was the only person in a wheelchair in the room).
   In her remarks, Ms. Brown focused on disability justice, pointing out that it is different from disability rights.  Whereas disability rights is about getting laws regarding access and accommodations enacted and enforced, disability justice is about getting people with disabilities seen as equal and included as such.  Disability rights opens doors; disability justice opens minds and maybe hearts.   
   The disabled aren’t regarded as equals and are often not included and have to fight to be or make a point of being included. As Ms.  Brown pointed out, the disabled are guilty too of having this mindset, seeing the disabled or those with other disabilities as not being equal and then not including them.  I did it when I thought it odd that Ms.  Brown didn’t have a physical disability.  I do it, much to my shame, when I see people who are mentally disability and am embarrassed and think, “I’m not like them.  I’m not one of them!”
   I do this, because people often mistakenly think or assume that I’m mentally disabled, and I have to fight to show that I’m not.  I also do it because I would hate to be like that. 
   I was reflecting later on how, yes, this is what we do when people are sick.  Not only do we not want to be like them – sick – we tend to forget them, go on with our lives, leaving them behind until they get well and catch up with us. Much of this is due to not feeling well, not wanting germs to spread, etc., but there is still a psychological impact, both on those who are sick and those who are not sick. Illness is not only a bad thing, something to be avoided, something to be eradicated; it is something to be ashamed, if not guilty of.  Before two years ago, when I was far less disabled and more active, I particularly hated being sick, not just because I felt crummy but also because I was not active and felt more disabled and also forgotten, left behind, not a part of the world, much less the community.
   And, yes, this is often how I feel as a disabled person – forgotten, left behind – but the difference is I feel well, well enough to want to be part of the world, part of the community, and well enough to make noise and raise a stink, to request or demand that there be a ramp and that I can be a part. But it does get awfully tiring having to constantly raise a stink.  And what about those who can’t speak up to be a part of the world, part of or simply out in the community in whatever way they can. 
   Who am I – who are we – to think that they don’t?

Friday, April 19, 2019

The great battery scam

   On Sunday morning, I was getting ready to go to Meeting.  This is somewhat of an undertaking, to say the least, since Meeting for Worship starts at 9:30, and it takes some time to get me cleaned and dressed, up in my chair, fed, in my van and to the Meeting.  It didn’t help that I overslept 20 or 30 minutes. 
   I was pretty impressed, even amazed, when I was up in my chair, fed and ready to get in the van by about 9:15. The van just had to be taken out of the garage.  I would be just a 5 or 10 minutes late for worship.  Not too bad – although I tend to disapprove of people being tardy to meeting (even as, yes, I have always had difficulty getting to meeting by 9:30!). My attendant and I – we were hauling ass! 
   Then it happened.  My attendant went to start up the van, and it wouldn’t start up.  Because of a dead battery.  And it wasn’t the battery in the van that was dead.  It was the battery in the key. 
   The battery in the key!  There was a battery in the key?  Really? 
   Really!  Just like everything else has a battery these days.  Everything from watches to remote controls for televisions.  You can’t just wind up your watch or press a button or flip a switch to turn on the T.V. No.  Everything now is operated by and reliant on batteries, and those batteries, as is the nature of batteries, run out and have
to be replaced or charged, which, as is the nature of obtaining energy, isn’t free. In other words, it costs money.
   So I had busted my butt, not to mention my attendant’s, and gotten up for nothing.  I was going to miss worship.  Shoot! 
   Then, while I was stewing and not being Quakerly or worshipful, my attendant was making some calls – generally useless – and fiddling with the key and discovered that, lo and behold, there’s a key – an actual, old-school key – inside the key – the “fob” or whatever – that she could pull out.  She went out to the van again and – wonder of wonders – it started up with the key. 
   It turns out the battery is needed only to enable the buttons on the fob to work. And do they do much more than set off that alarm which I’ve found annoying since way before I had a fob to deal with?    I don’t know if the fob is needed to lock and unlock the van. And even if it is, it just proves my point even more.  All these batteries are a scam, something we don’t need but now can’t seem to do without and are now another way to get us to pay and pay more and more. 
   It’s enough to drive me off the grid, except that I would be in real trouble, relying so much as I do on technology, including that which now enables to get up and discover a new life after two years of learning that I can deal with and live with a new disability.