My dad was in a wheelchair—due in part to the disease I’ve inherited—for the last ten years of his life, so I thought I knew a lot about public reaction to a disability.
I’ve had my share of yelling matches with perfectly able-bodied jerks who park in the handicap zones, stared down serving staff whose sensibilities were ruffled by the presence of a wheelchair in their section and apologized for accidentally steering him into store end caps. What I learned from him is screw them all, do what you want and be where you want to be.
My love, whose own father was challenged with Parkinson’s disease, was good at grabbing my dad by the back of his belt and hoisting him out of our then very low to the ground Mustang. I’m sure there were times he was nearly spitting cotton, but it didn’t matter. He was enjoying an outing. He was having fun.
But it turns out there is so much more to learn. Nothing about my recent education would be news to anyone who has had to deal with any sort of physical, mental or psychological challenge, but it’s all new to me and therefore a little fascinating. Here are just a few of the things I have picked up.
This may be racial profiling, but young women of Asian and Middle Eastern descent are my best friends on public transportation. I have had young female Chinese students race to give up their seat and once a teen girl in a hijab nearly cleared the entire front of a bus for me. She yelled, people scattered. I think it might have something to do with their upbringing and cultures that actually value aging relatives who might need a little extra consideration now and then. Makes me wonder—when we talk about diversity and tolerance—many we should be taking about how much these new Canadians have to tolerate from us.
Like anyone else, I appreciate you holding the door for me. It’s definitely preferable to getting hit in the face with it. However, understand that you are making a commitment and you should do so graciously. I’d rather open my own door when I get there on my own time than feel the need to step up the pace to get that disappointed look off your face.
Understand that no matter how close you walk or stand behind me, it’s not going to make me more flexible or quick. Doesn’t work like that. If it did, I would hire someone to walk very close behind me just to keep me in motion.
Don’t give me that look when I eschew the stairs for the elevator. Yes, I look healthy, relatively young for my age, I’m usually fairly neat and well dressed and I don’t use a cane or any other sort of aid. I’m not lazy, seeking sympathy or feeling sorry for myself. Trust me, attempting those stairs is going to ruin my night.
Yes, I do know you’re in a hurry and you want to get around me, but try not to dart left and right; just pick a path and go. Whether I see you coming at me, or feel you behind me, I can’t react to your sudden motion and it makes me freeze in place. Which does neither of us any good.
And to the several people out there who seem disappointed that I’m still working—get over it. Currently, the toughest thing about my workday is getting my tights or stockings on—and that’s only because the bend-ability of both knees is less than ten percent of what it should be. Summer, with cute dresses that can be flung over one’s head and wriggled into, along with bare legs and slip-on flats sans socks will make the mornings much easier. Besides, it’s my brain that makes the money—and as long as I can limp, wheel, crawl or roll up to a laptop, I’m working.
Take note—there will be times when I am simply not myself. Dealing with even low grade chronic pain can cause brain fog, mood swings and feelings of frustration and exhaustion. The pain pills can sometimes cause headaches or stomach woes. All temporary. It all could be so much worse. It’s not cancer. It’s not dementia. It’s not any one of many other horrible things one can get. It’s just hurts to walk. Sometimes. But only until the doctors and I figure out how to fix it.
And that point is never lost on me.
I’ve come to the conclusion that if timing is everything, then I’ve got nothing.
Which is to say I usually get the best ideas to start something new at the worst possible time. But I also believe that if you wait for the “right time” to do something, you’d never do anything at all.
So in the midst of working full time at a fairly demanding job, consulting some on the side, two physio appointments a week and beginning a run up to surgery—along with all the usual stuff like housework, dentist appointments, getting Team Z to various vet check-ups, making sure we eat, have clean clothes and prepping for tax time—I’ve decided it’s time to start working on a book.
Actually, it’s not my decision. The story won’t leave me alone. It interrupts my showers, my commute and my sleep. My handbag is stuffed with scribbled-on index cards. The main character keeps downloading strange books for me to read. She whispers to me when I think I’m alone in my head. She tells me jokes. Normal people would make immediately go see some sort of specialized healthcare professional to make these encounters stop. But if you’re a writer, this is what passes for normal. And it means you might be on to something good.
So for the next year or two, whenever I have a spare half hour, I’ll be crawling into the skin of my narrator, a “(wo)man in black” who works for a covert government agency that investigates conspiracies. She also happens to be psychic. And figures out that we’re all in big trouble. Yeah, she’s got a hard row to hoe and a lot of evil to tap down. But I like her a lot and I’m looking forward to spending time being her. Or at least being along for the ride.
Problem is, when you travel in my circles, “I working on a book” can be one of the most joyous lines you hear. It can also sound like one of the most pretentious, depending on tone. And intent.
I’m a big believer that you get more writing done when you actually write, instead of talk or write about writing.
Which means entries to this blog may get few and far between at times.
What I will do though, is once I’m far enough along that the story makes some sense if you’re not me, I may share a sneak preview chapter or two. Could happen. Might.
For those of you who know me personally, if, in the near future, I start a serious discussion about Area 51 or the Illuminati or our reptilian alien overlords, remember, it’s not me. It’s my character. But never forget, Fox Mulder said “the truth is out there.” Or I could just make it up for a good yarn.
And yes, for the skeptics among us, I do think I’d look quite fetching in a tin foil hat.
The facts. For the past year or so, I have had pain in both the back and front of my knees that ranges from “oh, ouch,” to “when did it get so hard to put on a pair of tights?” to “God, don’t let me fall down on the train tracks.” I tried to rationalize it, because if I can find a way to intellectualize something, I can avoid involving my feelings. I shaved off a few pounds. I blamed bad shoes, a too heavy handbag, various chairs and other forms of seating and when I was cranky and fatalistic, old age sneaking up on me.
But I knew it was none of these and I would be called on my lying ways eventually. My dad was in a wheelchair for the last ten years of his life and died a very difficult and painful death from complications of arthritis. I didn’t want to go there.
My doctor noticed the swelling a few weeks ago during my annual check-up and sent me for x-rays that afternoon. And last week, I got the diagnosis. Turns out I really am my daddy’s girl. I have fairly severe osteoarthritis (happily, not rheumatoid, the other kind that slowly kills your immune system) in both knees, with a host of complications like joint damage, and “loose bodies,” which are tiny shards of bone that float around the knee area and hurt like crazy when they come to rest on a nerve. My once rather cute kneecap is totally AWOL and the level of swelling officially makes shorter skirts out of the question.
My doctor told me surgery—either to “scoop” out the bone shards (I immediately pictured getting the procedure done at a Baskin Robbins) — or to rebuild the knees in total is pretty much inevitable. But to buy me some time and help to manage the pain until…well, I can’t manage it anymore, I am now, for the first time in my life, in physiotherapy and a rehab program (I always thought if I ever wound up in rehab, it would be for something more pleasurable like excessive consumption of chocolate or a video solitaire addiction.)
My assessment was this past week and not only are my knees totally trashed, to compensate for the pain, I’m messing up my hip. But the exercises seem to help (not that I needed another hour of activity added to my day), the hot vibrating mini-electric chair thing-gummy they hooked up to my knees felt great (once it stopped making me howl from the tickling) and I’m starting to think that maybe this physio thing isn’t the quackery and insurance grab (and I am so well insured!) that I initially suspected.
So I do this. Two sessions a week and two to three sets of exercises a day. Until I can’t do it anymore. My doctor says I’ll know when we get there. And that I’m the boss of this.
But none of this is the point. The point is something I’ve learned about myself that I’m more concerned about than the pain in my knee, the eventual surgery (five days in bed to read and drink London Fogs from the Second Cup in the lobby. Sign me up!) or what the future holds for my mobility and independence.
Here’s the thing. I got my love through major surgery and the possibility of cancer—that wasn’t, touch wood. I nursed my mother through a triple bypass. I can navigate hospitals, doctor’s appointments, medication and therapy; I can take time away from my busy schedule to deal with any kind of health issues—for everyone else.
But I’m really having trouble getting my head around taking care of me. I’m trying to balance physio appointments to make sure I don’t miss meetings at work. The very idea of taking time for two rehab sessions a week—I talked them down from three—boggles my mind. The exercises aren’t difficult and I feel better having done them—but just the same, locking myself up in a room to lie on a mat on the floor, move my legs this way and that, squeeze a small beach ball between my knees 30 times and balance a pillow up to the wall for a while (Isometrics. I don’t get it, but it seems to work.) feels somehow selfish. And the idea of being post-surgically laid up, dependent and unable to complete the daily race-cum-endurance contest-cum-high jump event that is my life—well, I’m sorry but that just won’t compute.
I have to make this clear; no one is “making” me feel this way. No one is telling me I’m not worthy. My love, my friends and everyone at my place of work have been fully supportive. Coddling even. This is totally and completely my own baggage.
I wonder how I picked up the message that everyone else’s pain and problems are serious but mine aren’t. That through my superhuman strength and remarkable endurance threshold, I don’t need time or space or care. That I can will or ignore my own needs away. And frankly, since I’ve never exactly been the long-suffering selfless doormat type—really I’m not—I don’t know how or when these feelings came about. Maybe they snuck up on me when I was busy doing everything else—for everyone else.
Trust me; this has been one of those turning point moments. I’m angry that I’ve been treating myself with such little regard. But at least now I’m aware of it. I’m thinking of the revelation as a slap to the head by my own knee (oh, if only I could do that). And I’m hoping that by going through this process, the future holds not just pain-free dancing, stair-climbing, getting the wiggle in my walk back knees—but also the recognition that I am fully deserving of a little attention now and then.
This week, America’s fundamentalist “Christian” right continued to show its hand with laws that are based on segregation, discrimination and—let’s cut to the chase—hatred. Clearly the human evolution is running backwards for those who feel the need to pass laws that reduce the rights of one group or another. Coming on the heels of a federal decree that married gay and lesbian couples should be treated like…well, married people…Indiana has voted for a state constitutional ban on same-sex marriage, while Kansas and Arizona have decided it’s perfect legal and within the rights of endangered religious business owners to refuse services to gay and lesbian couples…or those they suspect might be.
I could write pages and pages about ignorance and prejudice and the crazy hypocritical bible-thumping theocracy that America is becoming. But why would I? I don’t live there, I’m not subject to those laws and really, what difference would it make? I could rage against this particularly petty and heinous kind of bigotry until my fingers fall off from typing. And all I’d gain is a smaller glove size. Just like one can’t fix stupid, I’ve come to the conclusion in my later years that you can’t solve hatred. It’s just there. The small-mind, the ignorant, those lacking in confidence and independent thought, those needing the crutch of religion on which to base their choices will always exist. They have forever. These are the same people who burnt witches and tortured heretics and gassed Jews and Gypsies – as long as humans draw breath on this earth, there will be those who fear and loathe what (and who) they don’t understand. It’s the dark underbelly of human nature. We should have lost it as we travelled the evolutionary trail, along with our gills and second stomach, but it just didn’t happen that way.
But what I’d like to know is how does one come to the suspicion that someone is gay or lesbian? It’s not like we wear signs. And not everyone looks like a butchy female gym teacher or a swishy male hairdresser–and don’t get me wrong, I’m proud of these people who can wear their difference so honestly and naturally. But still, while maybe the rest of the world hasn’t got their heads around diversity, but we have.
I used to make jokes that I only looked like a lesbian when my lover walked into the room. I spent years trying to convince my sapphic sisterhood that I was a real true for-sure lesbian, not a tourist, not experimenting – because when I came out in the late 70s and early 80s (and yes, it’s a journey, not a destination), I wasn’t really all that good at giving the appearance that I was “in the life.” Granted, my hair has been short most of my life—because it’s very fine and quite wavy and a short fluffy cut is the only way I can leave the house half presentable without spending hours in front of a mirror—that was my most obvious “tell.” That and a studied expression that married a sneer and pout that I used to practice before heading out to bars. The rest of me is all wrong—or at least it was in 1979 and for some years after that. Sports bore me. I’m built with too many curves and too much roundness to ever be confused with the archetypical skinny tomboy type. I like skirts and sweater sets and flowing scarves and dangly earrings and, before I finally had to admit that I was slowly crippling myself, heels that practically make one require extra oxygen. I have drawers full of lipstick and closets full of purses and shoes and hats. At nearly 54, I’m still a raving clotheshorse, who just picked out three sweet little dresses to add to the summer repertoire.
That’s me. That’s permanent. Even when it’s time to go into the light, my earrings better match my sweater or I’m not going until I get changed.
The point is…would I be suspect? Would I be served by these legally sanctioned religious fanatics? Not that I’d drop one thin dime in their holy establishments? But would I pass? Would I totally make a fool of them all?
Unless someone comes across a couple in the act of making love—which I presume wouldn’t be happening in a bakery or car wash or shoe store or whatever kind of business in question…how would someone become suspect for being gay?
Years ago, when my love and I would shop for groceries, the two of us would put the groceries out on the belt and stand together and wait. The cashier would get flustered trying to figure out where my love’s groceries ended and mine began. Clearly two women couldn’t be buying food for one household–lock up your daughters! It was amusing but telling. But that was twenty-odd years ago… it would never happen now.
“Suspected of being gay or lesbian” is probably the craziest aspect of these ugly laws. Anyone can suspect anyone of just about anything. But unless you can prove it, you best keep it to yourself. Or someone’s going to court. Granted, I’d rather be suspected of being a lesbian than of being a problem gambler or a closet kleptomaniac or for that matter, a bat-shit crazy Christian fundamentalist. But that’s me.
Basically what these laws mean is the legal sanctioning of shunning. Isolated, now-extinct societies did that to keep the community pure. Sects do that when they feel they have a deviant in their midst. It’s nothing but a control mechanism designed to create fear and division and a sense of us against them. Group bully mentality. And in the year 2014, it’s a travesty.
I don’t write in this blog about being a lesbian very often. But I also don’t write about being white or right-handed or grey-haired, that I have brown eyes, or that I have never been able to correctly pronounce the word “aluminum.” That’s just who I am and frankly, I don’t feel I have anything to prove or defend or any need to convince anyone that who I am and I what I am is right. I left the more militant politics behind because I felt being gay was only one aspect of who I was and there were so many other things to explore.
But the way things are going, I SUSPECT I’m going to have get more vocal and let my inner bad-ass radical out to play.
Any woman who was ever once a Brownie probably remembers that this was our motto. I think it was supposed to comfort us in that if we were ever lost alone in the woods, not to worry, we would be prepared to tie knots and identify poisonous wild plants. Or that we would be prepared to transform used 45s and some floral putty into a Mother’s Day gift or a powder puff, two buttons and pipe cleaner into a cute bunny pin. But while Grey and Tawny Owls never mentioned it to us at the time, truly being prepared can have an enormous effect on the broader parts of one’s life.
Not long ago, I was having a text conversation with a long distance friend and I mentioned I was on my way home from work. He got his stern dad voice on (yeah, I can tell that in a text from him) and told me he hoped I wasn’t driving. I wasn’t. Public transit around here won’t let me take the wheel, no matter how much I ask. But that he thought I would text while driving made me wonder just how dumb he thought I was until I realized something about our history. And texted him that no, I wasn’t driving, but that he’d think so…
“Because I appear far more reckless than I actually am. “
“YES”…he shot back in CAPS. “You’ve always been that way.”
First, he’s not the CAPS type.
He gets to say “always.” He met me when I was 17.
And he’s right. But there’s a reason I can meander through life seeming reckless and fancy free—and apparently I always have.
It’s because I am prepared. Oh, I am sooo prepared.
Being ready for whatever might happen makes it easier to embrace the unknown. It means controlling the things you can control (and recognizing what a short list that is) so you have the energy and strength to deal with all the things you can’t. Winter clothes are ready and waiting so I don’t care if it gets cold, I can enjoy the beauty of the snow. Candles and flashlights at the ready make a power outage wonderfully romantic. A couple months’ salary in a savings account and a list of the first ten people I’d call if I lost my job tomorrow turns what could be a crisis into a myriad of possibilities.
Don’t get me wrong–being prepared doesn’t make one a prepper, although the term makes me smile. But these people aren’t freeing themselves up to embrace life; they’re hedging their bets against it. I’d rather perish in whatever cataclysmic event comes our way than live in a underground silo. Subways are the most underground I’m willing to go. And I don’t see the reason to hoard; when I do buy in bulk, usually the stuff goes bad before I can get around to using it all. It took us forever to work our way through all the bottled water, peanut butter and toilet paper we bought late in 1999.
Being prepared doesn’t take as much time or energy as you’d think. I get a lot of lot of help too. My love is even more serious about being prepared. She chided herself this morning for not calling the guy who puts on our winter tires. Normally we have them on by Canadian Thanksgiving, but it was so summer-like this year, we got sloppy. They’re in the car now in case the guy can do it tomorrow. Obsessive? A little. But we’ll never get caught sliding into a ditch like so many during the first rough snowstorm. We can smile and pick up hot chocolate for the long, slow ride home.
It helps too, that I love lists and schedules and the creating of both. The first app I downloaded on my new iPad Mini was the Moleskein one that lets you create unlimited notebooks and lists, then sort and label them all. Bliss. I love making check marks on things that done. I picked a profession that runs on deadlines. I don’t think that was an accident.
Right now tonight’s Sunday dinner pork loin is simmering away in the stove (yes, of course this blog is written in advance as well!) and tomorrow’s meat loaves are made, two of them so there’s plenty for sandwiches. Potatoes and vegetables cleaned and refrigerated for both meals. Monday is a rough day that kicks off a busy week, I like to make it easier if I can. There was a time when I made five meals for freezing every Sunday but as we’ve aged, we find a big hot meal every night is just too much. So I leave a little room for impulse soup night or breakfast for dinner.
My clothes for the next day are always laid out the night before. I arise before 5 a.m. and I’m simply not functioning at a sufficient level to go searching for a specific pair of shoes or scarf or earrings necessary to finish an outfit. I keep a small cache of chocolate, nuts and dried fruit in my knapsack, an emergency $20 in my wallet and a few pairs of hosiery at work. Extra shoes too and when I used to spend longer hours in my office, I had shower supplies and a fresh outfit or two. Because you never know.
That’s the thing. You never know. And that’s ok. As long as you’re prepared for the things you can anticipate, you’ll have a calm mind to figure out the rest. Being ready makes you fearless. And to me, fearlessness is sexy, it’s powerful, it’s an ideal state of being. I aspire to fearlessness. it’s life lived with the sound turned up.
Not having to worry if I’m equipped to handle the mundane everyday stuff of life frees me up to leave the rest to chance. It may sound cliche, but I think life should be an adventure.
And you can bet I’ll be properly packed for it.