Thrown Into the Deep End

There’s a strange sense of accomplishment that comes with defying the medical odds and cheating Death during what could have easily – should have likely – been the cause of it. 

Initially, it’s the sense of awe you feel throughout the early stages of recovery, the wonder felt as you reengage with things you once took for granted: sitting on your patio, the sun on your face as you take several deep breaths of fresh air. The gastronomical delight of eating your favorite foods as both your appetite and taste buds slowly return to normal. Running a mundane errand, such as hitting up CostCo for basic supplies or picking up clothing from the drycleaners. That first time back at the gym, be it for ten minutes on a stationary bike or ten laps in the pool. 

For me, the pool became my Happy Place after surviving a near-fatal illness during the birth of my daughter nineteen years ago. I began with a mere four laps and worked up to 1-2 miles per swim. Doing those laps, slow though they were, was the most glorious aspect of my long-term recovery process. I used to keep track of each lap by repeating silly rhymes in my head as I swam.

One, one, this is fun. Two, two, look what I can do. Laps seven and eight were always my favorites. Seven, seven, almost went to heaven. Eight, eight, but now I feel great. And ten always made me want to smile, even with my face submerged in chlorinated water. Ten, ten, let’s not do that again.

The thing about overcoming a once-in-a-lifetime medical challenge is that it’s easy – preferable even – to think you’ll be spared any further harrowing experiences of this nature. You’ve checked off that box and surely Life will reward you with a gentle path from here on out. I certainly felt that way for years after my own near-miss, my unbridled optimism about the future, I believe, helping me achieve an 80-85% recovery. I had no idea that I’d be slapped down again by the long-term consequences of having survived what was supposed to have been a heartbreaking maternal death due to preeclampsia, HELLP Syndrome, and a month-long bout with uncontrollable internal hemorrhaging or DIC (which, behind closed doors, is often defined as Death Is Certain). But those consequences did, in fact, arrive – in the form of numerous necrotic and excruciatingly painful joints.

A few months after my fourth total joint replacement last year, I read a story in the New York Times about a (much) younger swimmer who’d undergone a harrowing experience with debilitating foot and leg pain for five years before she underwent a below-the-knee amputation. She was 20 years old when the surgery took place. 

Three months later, she was back in the pool after a two-year hiatus. She quickly became a national champion in several Para Swimming events, resulting in her selection to train for the Tokyo Paralympics at the United States Olympic facility in Colorado Springs. She transferred to the University of Colorado to continue her pre-med studies while training. Life, while not what she expected, was back on track and promising a bright future.  

The New York Times story was an awesome feel-good piece about embracing one’s challenges and finding the silver lining in what initially appears to be an insurmountable setback. And those who know me also know that I love a good uplifting story. They’re like super vitamins for my soul, offering proof that the human body is capable of great things. Reading about this young woman’s courage made me believe I might actually have a shot at swimming “real” laps again one day, enough with this water jogging business!

I contacted the young woman (of course I did!) to let her know how much I was encouraged by her story, moved by her incredible level of resilience and accomplishment. What I didn’t know is that when the New York Times story dropped this past March, she was in her second month of experiencing similar issues with her other foot. 

She wrote to me a few hours ago: her right leg will also be amputated in two weeks. 

Reading her update felt like a punch in the gut. So young. So unfair. 

But Life never claimed to be fair, did it? And, as I’ve learned from my own ongoing medical challenges, not all comebacks are permanent. Relapses, complications, and changes to one’s body can wreak havoc long after the celebratory well wishes dissipate, when others expect you to be, more or less, “back to normal.”

Here’s another thing I’ve learned about ongoing medical challenges: they’re costly. Regardless of how good your health insurance might be. Additional costs add up quickly: equipment not covered by insurance, loss of income due to illness or disability, loss of income due to caring for someone with an illness or disability, experimenting with supplements and complementary treatments that might help but aren’t yet mainstream, travel to and from out-of-town/state consultations, hiring people to do the things you can no longer do for yourself. There is so much more involved in the cost of healthcare than that which insurance companies cover. So. Much. More. Major medical challenges can be not only physically crippling, but financially crippling as well. I speak with firsthand knowledge of this.

Right now, the parents of this young woman, who still dreams of representing the United States at the Paralympics, are dealing with out-of-pocket healthcare costs in the hundreds of thousands. If you’re moved to help them out, here’s the GoFundMe link:

And if, in the future, you see a news story about the Paralympics, look for this name: Morgan Stickney. I’ve got a hunch she’ll be listed as a medalist. 

Morgan’s hashtag: #backonmyfeet

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.