Tag: handicapped

Learning Acceptance

I could no longer deny that my body was falling apart when I awoke in a Washington D.C. hotel to go to work at my job with the Foundation for America’s Blood Centers and I couldn’t walk. Couldn’t get out of bed without excruciating pain. After popping a few ibuprofen and finally, and in great discomfort, wall-walking my way to the bathroom, I got back in bed and remained there for several days before flying back to my home in Boulder, Colorado, without so much as five minutes spent at the D.C. offices. A month or so later I realized I had to resign my position as the president of that nonprofit, the same organization whose members had helped save my life eleven years earlier with a plethora of safe and available blood. I had already been dealing with a “frozen” shoulder for a decade and now it appeared my feet and ankles were going as well. My knees, one of which had already undergone arthroscopic surgery, were aching more, sometimes compounded by sharp shooting pains. Hips, still holding their own, though without much range of motion. I was in my 40s at that point, and certain that someday I’d be one of those cool old ladies who runs 10Ks with her younger pals. Um, nope. 

The arthroscopic surgeries began to pile up, until there was nothing left to scope. Then the injections of synthetic synovial fluid began. When they no longer worked, I turned to cortisone injections. When their efficacy eroded, I stopped taking walks, still in deep denial about what was happening to my major joints, still convinced I could reverse end-stage osteoarthritis and whatever autoimmune illness I had – one doc said ankylosing spondylitis; another said fibromyalgia – with all the green juice and seated yoga I was doing. Denial knows no bounds, am I right?

My husband, daughter, and I were in Michigan visiting my in-laws over Christmas of 2016 and I could barely pull myself up the stairs from our lower level bedrooms to the main floor. My pain level during that visit finally flipped a switch within me, shifting from denial to acceptance regarding the reality of my deteriorating joints. I returned to Boulder and set up an appointment with my orthopedic doc, a great guy who’d been warning me for years that I likely wouldn’t be leaving this world without at least 4-6 joint replacements. I’ll bet you ten bucks I can fix this without replacements was my standard response. I hope you win that bet was his.

 “I owe you ten bucks,” I said when he walked into the examination room.

“Keep it,” he said. “Let’s just get you set up to meet with some joint replacement surgeons and get you some shiny new parts.”

And so my journey of becoming bionic began. Within 19 months, I had undergone four total joint replacements: an ankle, a shoulder, and both knees. The other ankle needs replacing too, as soon as my new shoulder is strong enough to bear my weight on crutches. The other shoulder is beginning to show the telltale signs of end-stage degeneration, and one of my hips is acting up as well, though I suspect I’ll get another five years out of them before active discussions of hip replacements are necessary. 

Becoming bionic was not a part of my plan; and trust me when I say that most of my life I’ve been a girl with a plan. Lots of plans in fact. Big plans! But you know the old saying: We plan, God laughs. And so I finally surrendered to the reality of my life. My plans for climbing Mt. Kilimanjaro and completing an Ironman were definitely off the table now. And I continue to learn from this entire experience of the slow, chronic loss of mobility and my efforts to regain what I can in the way of pain-free movement.

I’m learning to work with what I have versus what I wish I had. 

I’m learning to focus on all the richness in my life, even if that richness comes with a wonky walk, neuropathy in my feet, occasional surgeries, lots of physical therapy, and a deep fear of any walking surface that appears slippery: shiny tile floors, icy patches on sidewalks, snow, rain, mud. 

I’m learning to seek the inspiration I receive from those who’ve walked before me, especially the inspiration I receive regularly from my sister-in-law, Val, who is in her 23rd year with chronic progressive MS and is completely frozen except for her face, mind, and sense of humor. 

I am learning to value the lessons that come with Life’s challenges.

I’m learning acceptance.               

Start Where You Are

I was speaking with a friend today and whining about how I didn’t expect my life to be where it is at this age and stage. “I need a new beginning,” I lamented, “but I don’t even know where to start.”

“Start where you are,” she said. 

Four simple words that pretty much sum it up. In a nutshell, this is where I am: I’m 54, I’m broke, and I’m broken. Okay, so I’m being somewhat hyperbolic. But that’s what it feels like on my bad days—like today, when both my body and soul ache in equal measure.

It wasn’t always this way. I once had a career that worked pretty well for me: traveled a lot on business, loved interacting with people, received regular promotions and accolades. I once had a body that worked pretty well for me: ran marathons, hiked mountains, ate and drank whatever the hell I wanted, still looked and felt good. My mistake was holding the false notion that things would always be on the upswing, that my star would continue rising because I would continue doing what I was doing.

I didn’t plan for the possibility that I might one day get sick. Sick enough that my body would never be the same again.

Sick enough that my recovery would only go so far before early-onset menopause would halt all progress and serve up a heaping helping of autoimmunity and severe osteoarthritis with a side of cancer just to drive the point home.

I didn’t understand that the medical insurance policies I used to scoff at in my younger years every time I accepted a bigger better position at a new company and went through the process of selecting my benefits package would only go so far when I actually needed them. Didn’t understand how quickly the out-of-pocket costs for every attempt I made to improve my wellness both inside and outside the standard western medicine model would add up. 

When I left my last position running an international nonprofit four years ago, I thought the debilitating pain that had become a part of my everyday experience was due to being burned out, that I simply needed a few months to sleep, play, and read all those novels I’d bought but hadn’t cracked. I figured I’d rest up and refuel before finding another position that didn’t require a commute halfway across the country. But as the months—then years—passed, I realized I was getting worse, not better. The doctor visits increased, medications and treatments and surgeries were doled out, new diets and physical therapy approaches were experimented with, and I experienced a constant two steps forward, one step back. On some days, it was one step forward, two steps back. 

Over the years I’ve discovered some things that work for me: sleep—and lots of it, fresh whole foods and restrictions on alcohol and crap food (mmmm, pizza), massage and other forms of body work, gentle floor-based yoga, water jogging (yes, I’ve joined those middle-aged women I used to make fun of), pain meds as needed, laughter, friends. I now celebrate when I discover something else in my body that works a little better, or hurts a little less. I measure my physical successes in the small things, like being able to get my arms high enough to put my hair in a ponytail, no longer at the mercy of a stranger in the locker room to clip it up for me.

But the woman I was, that woman who traveled incessantly, ran through airports, gave multiple speeches and media interviews in the same day, who once flew to another city in the middle of a ten-day sales conference to run a marathon—that woman is gone. Forever. As much as I want her back, I know she is never coming back. I need to mourn the loss of her—and move on. 

My body will never be where it once was. I’ll never regain the stamina and physicality to undertake the kind of whirlwind speaking tours on which I once thrived. When I’m able to return to work, I will likely need to stop throughout my day to lie on the floor and put my legs up the wall or take a quick nap or meditate. (I can’t even imagine how much the thought of this would’ve made my skin crawl with shame in my 30s, such was my level of smugness regarding my health and go-getterness.) 

autoimmunity

Instead of cursing the fact that I have handicapped handrails on my toilets at home and a handicapped parking placard hanging from the rearview mirror of my car, I need to see them for what they are—a gift, that tiny bit of extra help when it feels like any one of my joints could snap with the mere flick of a finger.

Some days, I know, I will awaken with more physical pain than usual and will need to simply stay in bed and read a book or, better yet, sleep. Because some days, that’s what my body—very clearly—tells me I need to do. I no longer have the luxury of pushing through and paying the price later. That bill came due years ago.

And so this is where I am. My mind and soul are still strong, but they’re now traveling through life in a vehicle that was in a near-fatal pile-up and will never perform the way it once could. I am reminded of my first literal automobile accident a month after receiving my driver’s license and how the frame of the family station wagon was bent, requiring my mom to replace the car less than two months later. Until full body transplants are available, I don’t have that luxury.

But hey, I’m still here. I still have brains and know-how and plenty of life experience from which to draw. And I’m now sufficiently bored with being “a patient in recovery.” I’m so ready to get back out there, in whatever form that takes. So ready to interact with others, to solve problems that have nothing to do with my health, to create and be creative. To begin anew, even with a body that isn’t so new.

And to do that I will start where I am.

Bye, Felicia!