Second time’s a charm

Just over eight months ago, as they pulled my gurney out of the operating room, I remember thinking “half-way there,” then snuggling down into the warm blankets and the miraculous pain-free-ness of my epidural.

Halfway there. On my way. Almost able to see the finish line.

While I don’t actually remember when the pain began, I do remember being one busy, active, independent middle-aged woman. Despite my inability to go to sleep if we don’t have some spare cases of my favorite soda, the fact that my favorite fruit is the strawberry filling inside the dark chocolate Lindt bar and on my puffier days, I share the same dress size as Marilyn Monroe (look it up!), I was unreasonably healthy, with a 115/75 blood pressure—a good number for a 20-year-old—and the ability to breeze—no, dance— through a 50-60 hour work week that included the day job that I love plus at least a few nights or weekend days of consulting.

But somewhere along the way, I stopped being able to stand for any length of time, my knees gradually ached so much that I used to rest a hot cup of Starbucks on them during my commute just to ease the pain and when I got off a chair, it sounded like someone was rattling a bag of broken china. Genetics didn’t help—my father suffered both osteoarthritis and rheumatoid arthritis, his life ending at 77 due to an immune system destroyed by the meds.

I wasn’t scared. I wasn’t angry. I just wanted to be fixed.

Last December’s left knee replacement was a voyage to the unknown. An adventure. I had no idea what to expect. I wasn’t afraid. Just anxious to get it done, get started on the road back to my life. I was shocked that the hardest part wasn’t the pain or the hard physical work to walk again—it was the feeling of stepping away from who I was for months on end. At the end of this month, three days before my favorite long weekend of the year, I’ll be back in the operating room for a replacement on the right side. My sense of adventure isn’t quite as strong as the first time around. But my sense of being in progress of getting back to being me is, for good reason, even stronger than before.

Yes, the pain is going to be pretty rough. For the first couple of weeks anyway. That I know. Walking with a walker is clumsy and frustrating and there will be days when the anger and exhaustion feel like way more than I can handle. But other days will be full of victories. And yes, I’m going to have to work like crazy to get my strength and flexibility and extension back—and I’m probably going to feel the same sense of being cut off from all the things that constitute my normal life.

But in just a handful of months—there will be no stopping me.

I’ll be able to break into a wildly entertaining dance in an empty grocery store aisle when a golden oldie comes on the store PA system.

I’ll be able to reunite with many of my beloved shoes and boots—and of course, my handbags too—not having to give a second thought as to whether I’ll be able to walk or manage to carry the weight. I’m thinking of a new Fossil Emerson satchel in caramel brown—just because I can. Soon.

My rock star walk will be more Stevie Nicks or Grace Slick than Ossy Osborne. That still matters.

I’ll be able to stand in line at a bank. I can go to movies and not worry about fidgeting in the seat. I can go shopping without having to call in every so often to point out that I haven’t been transported to the ER and I can go for walks. Oh walks.

Most of all, I’ll be walking, running, dancing me again. I’ll feel at home in my body again, not like the slow limping stranger who inhabits it now. This is my second chance. And frankly, it’s about time.

fossil-emerson-medium-leather-satchel

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Dishing on disability

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.

 


My knees. My needs.

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.

From me.