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?

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. 

A - sure - special show

   “Special” is indeed special.  The Netflix comedy, which premiered April 12, is, overall, quite remarkable and sort of amazing.  As a friend remarked, who knew my life would be a T.V show! 

   Not quite.  Ryan (Ryan O’Connor, who is also the writer and for whom I presume this is an autobiographical project) is able to walk, although with a significant limp, and doesn’t have a speech impediment – much in his favor – but he is disabled with Cerebral Palsy and is gay. Although far less disabled than I am or even was before two years ago, he is a disabled man, and one with unsexy C.P, making his way in the hyper-judgmental gay world and dealing with all the insecurity that entails.  Who, indeed, knew there would ever be such a show, let alone a comedy! 

   The mini-episodes, each running about 15 minutes and making for almost too easy binge-watching, are “big fun,” as my friend also said.  From what I’ve seen so far, the show manages to make some not-so-tasty medicine go down quite easily, without the sugar being too, too sweet.  There are some over-the-top, simplified scenes and characters, like the super-over-protective mother, not to mention the unbearably obnoxious boss, but this is typical in television comedies, and there really isn’t so much.  More notable are the surprisingly, even uncomfortably real scenes, such as when Ryan meets up with a sex worker, who he makes a point of telling he will “soon not pay for sex.” (I should also note that there is considerable profanity and nudity.) And the acting is sometimes not the best, but, again, it could be worse and certainly isn’t a turn-off.       

   I may want to write more after I’m done watching the series.  This is just my off-the-cuff, initial reaction and is in no way a full review. For now, at least, “Special” is definitely a show to watch – and not just because it’s remarkable, even amazing and, okay, special, that it’s on. 

Out-trumped by Trump

   I could write about President Trump’s latest move.  According to the Forbes Magazine website (oddly enough!), the Trump administration wants to keep an eye on the social media accounts of disabled people to see if they are doing too much physical activity, if they are doing and buying too many things, if they are too “happy” as the headline states, to qualify for disability benefits.  This is all in an effort to root out fraudulent disability claims (indeed a real problem, one that has made my life all the harder because of the endless scrutiny it necessitates – a post for another day!).

   I could rant and rave about how this is terribly unfair, mean and cruel.  I could point out that the proposed policy is just plain stupid, relying on tired assumptions and ignores the fact, borne out in studies, that disabled social media users tend to focus on the good, the fun, not on the daily hardships, in their lives when posting. 

   The thing is that, tomorrow or in a few days, Trump will do or say something at least as if not more stupid, at least as and probably more unfair and mean and cruel.  I could do all this, but it would be a waste, both in the writing and in the reading. 

   I recently read an Op-Ed piece by an author of political fiction pointing out that it’s getting harder and harder to write fiction when the reality is so strange. 

   As I pointed out in my last post before my two-year hiatus, what’s going on with Trump is outrageous and dangerous, but all we’re doing is acting like it’s a reality show or a Saturday Night Live skit.  As hilarious and enjoyable as the skits are, this is even more perilous now with another election coming up and the political landscape not that different than two years ago when everyone said there was no way Trump would win.  And we were also surprised when George W. Bush won a second term – remember?   

Mind over matter - two years later

   I have always heard and read about the power of the mind.  I have been told since I was a child that you could do anything “if you put your mind to it.” I have read numerous books and articles about how people have essentially healed themselves or have improved their health with positive thinking – some talk of the “power of prayer” – and such brain-centered techniques as bio-feedback.  Isn’t this what happens, after all, when people “kick the habit” or go “cold turkey?”

   The fact that I’m writing this, now two years after my last posting, is proof of this power of the mind. 

   I’m seeing it most vividly now, two years after being diagnosed with osteomyelitis, a very rare viral disease that attacks the bones, and needing emergency spinal surgery on February 28, 2017, after two weeks of debilitating pain in my neck.  The surgery, although it relieved my extreme suffering and frankly saved my life, left me far more disabled, paralyzed from the chest down, with my right arm contracted and very limited use of my left arm, and needing 24/7 attendant care – in addition to requiring pretty much complete assistance with daily living activities, I’ve had to be turned every 2 hours because of a horrific bed sore I got while at Pomona Valley Hospital after the surgery and which is now at last pretty much gone – and needing a g-tube for liquids and medications, an internal catheter permanently and assistance with bowel movements.  It also left me with considerable neuropathic pain, with my feet and legs feeling like hot rubber or sometimes steel but otherwise with no feeling, even as they frequently spasm, sometimes quite painfully, and with the palm of my hands constantly tingling and feeling like they’re being shocked when touched (I can’t have my finger nails trimmed without my hands being iced).  I have come to the conclusion after much of this time that the pain is even worse than being paralyzed and not having sensation – other than pain! - over much of my body. 

   Actually, I saw it before now, when I gave up taking various heavy-duty pain medications, including Fentanyl and Tramadol. Yes, this left me in pain or more pain, but I chose to deal with the pain and be more alert and alive. I now take only Gabapentin and, most effectively, cbd oil for pain. I have also given up on seeing new doctors, even pain doctors, in an effort to get answers to what has happened to my body and how to deal with it, as they only want to give me more drugs and really, I’ve realized, don’t know the answers.  The best explanation I’ve gotten, as blunt and hurtful as it was, is that my spine was damaged, injured, during the surgery, as necessary as it was, saving my life. 

   I have made steady progress in the last two years.  After being in a nursing home for four months after the surgery – the last thing I ever wanted but not as bad as it could have been, as I discovered when I stayed in another nursing home for a few days after another hospitalization last summer – I came home to a hospital bed equipped with an air mattress in my living room and a reclining manual wheelchair.  Outings, even to the backyard, were very much the exception and continued to be so after a physical therapist, with my urging, got me into my power wheelchair. As big of a step as this was, and even with pillows propping me up in the chair and other modifications, I still needed much assistance in going out, even if I was able to be left alone at a theater, and I needed to be home in time to lie down for a couple hours.  I did go on longer outings, such as to Los Angeles, and also on trips to the Bay Area and other destinations, but these involved much planning and preparation, not unexpectedly, and, more notably, were marathon, almost heroic, efforts. 

   Fast forward to now.  Yes, fast, for things have progressed in the last few weeks or month.  The best advice I’ve gotten was from a doctor who I had in the first nursing home and who I didn’t like.  He told me I can do whatever I want – it all depends on how I deal with the pain.  If you put your mind to it.  Last week, I suddenly began staying up in my chair all day, and I have been going out on my own, venturing further each day.  The other day, I came home from a concert at Pomona College on my own, and I went on my own to the Village, downtown, the next day.  Earlier, I had an attendant drop me off in the Village, and I tooled around for an hour, with the distinct and powerful feeling of being back from the dead.  Last year, I told my therapists at Casa Colina Hospital, who have done wonderful work with me, that I wanted to be able to go to the Village on my own.  I have reached this goal. 

   And I’ve reached it overnight, so it seems.  It is like I woke up last week and decided not to be a patient, not to be convalescing, anymore, realizing that I also have pain when I lay down and that I rather be up in my chair, able to do things and go places.  It is like everyone said that I couldn’t do so much, that my activity was now severely limited (even as they encouraged and pushed me to do more, making me feel guilty), and I believed it, bought into it.  It was, I see now, easier that way. 

   It helped that I recently got a new chair, which is far better and safer for me, with a custom-molded back, a better-located joystick and a better cushion and harness and with improvements continuing to be made.  It also helped that it is getting warmer – with the neuropathy, I’m now hyper-sensitive to cold and, to a lesser extent, heat, and I often have hot and cold “flashes.”

   But I think what really happened is that, although there are still moments when I’m stunned at what has happened to my body, when I can’t believe I can’t turn pages or turn the light on and think my life is Hell, I got sick of being sick.  I got tired of lying in bed and doing nothing.  I realized that I didn’t have to. I have no reason to. 

   I’m not sure how much I can do, how far I can go.  When I go out, going a bit farther than the time before, and I turn back to go home, I wonder why I’m not going farther.  For months, I have told friends that, when I’m able to, I wouldn’t go farther than the Village.  I probably won’t go much farther than the Village, but who knows? 

·         * *

   I have thought about and wanted to resume posting for a long time, but, again, I believed that I couldn’t, told myself that I couldn’t.  I am thrilled that I’m writing this, but I do have wariness. It is my hope to post one or two times a month – not as much as before and likely not as long as this – but I’m not making any promises.  I don’t want pressure, to feel I have to post, but I do want to post – perhaps more, perhaps less at times – and am happy to be doing so.