My Quest to Endure Numerous Joint Replacements, Regain Mobility, and Maintain Sanity in the Process
Author: Lauren Ward Larsen
A 50-something dealing with mobility challenges.
93% optimist, 7% WTSF?!
More metal than flesh at this point.
At times, hyperbolic (see previous statement).
Feel like giving up some days.
Not going to give up.
No. Damn. Way.
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 Timesabout 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.
Throughout my life, I’ve had phases of playing with and contemplating the unseen forces of this world – God, if you will. Or hell, call it Life, Great Mystery, the Universe, Spirit, the Divine, Consciousness, the Higher Self, or – as my siblings and I, with our warped senses of humor, call it: Dog. (This stems from the age-old joke about the agnostic dyslexic insomniac who stays up all night wondering if there’s a dog. Buh-dum-bum.)
I’ve wrestled with the question of fate vs. freewill since my 20s and now, in my 50s, I’m still attempting to understand their interplay. But I keep seeking answers. Intermittently.
I’m currently in another phase of diving deeply into the Unknown as I write this, regularly listening to various podcasts and online talks on the subject of consciousness, intention, dharma, and the role we, as individuals, can play in co-creating – or at least influencing – our reality. This latest spiritual exploration was likely triggered by the need to rebuild my life around my mobility challenges and restrictions.
Clearly, my corporate days are long gone. A high-pressure office environment filled with type-As and long hours would put me in a wheelchair in no time, if not flat out kill me. And my days of traveling extensively to give back-to-back speeches as an advocate are gone as well. Travel is now maybe a twice a year thing until further notice because it’s just too damn hard on my body at this stage in my (fingers crossed) recovery.
One of the author/lecturers whose work I’ve been listening to lately suggests that during your meditation practice each morning, you ask Higher Intelligence (as he likes to call it, whatever “it” is) for a sign that both “surprises and delights” you. You can ask for the sign in whatever area of your life needs clarity: your health, finances, career – whatever!
So this morning, I asked Higher Intelligence/God/Dog to show me a sign today regarding a book manuscript I’ve been working on, the subject matter of which is similar to this blog: joint replacements, mobility challenges, and all of the ancillary themes that come into play when you’re dealing with this sort of medical adventure. My writing had stalled over the past month, which led me to second guessing whether or not this project would even have an audience. So I put my request for a sign out to the Great Whatever and left for my walk with the dog.
Typically, I drive the three minutes to the trail RuPaul and I like to walk along, where he is then free to run off-leash and splash in the pond at the beginning of the two-mile loop. But this morning my husband had the car, so RuPaul and I walked a mile along surface streets before we arrived at the trailhead. It was only 8 a.m., but the temperatures here in Boulder have been wickedly hot this week.
Ru and I began our slow trek around the loop, passing a man who appeared to be 5 – 10 years my senior and was hobbling along with two hiking poles. Seeing him made me remember how much I had relied on hiking poles as I was both losing my mobility years ago and regaining it after my first three joint replacements. It made me grateful that I no longer needed to use poles, so long as the trail I was on was relatively flat (which this one is). I said hello to the man before passing him and continuing on my way.
About a third of a mile into the two-mile loop, I felt faint, my legs quaking a bit and my head feeling dizzy. Remarkably (because I’m usually a stubborn old mule when it comes to overriding the signals my body sends me), I did the smart thing and turned around, walking Ru back to the pond area where I sat on a bench in the shade to rest and he went in the water to cool off.
Minutes later, the older gentleman with the hiking poles joined me. He, too, had had to turn back on this particularly hot morning. He asked if he could share the bench to rest, and his dog, Lily, a young and vivacious white lab, joined RuPaul in the water.
The man wore a UCLA cap, so I asked if he’d gone to school there, as UCLA is my grad school alma mater. Yes, he had. I asked what program. Med school.
A conversation ensued, during which he mentioned his joint replacements. I mentioned mine. We laughed when we discovered we each had four new joints. Unlike me, however, he needed three revision surgeries on one of his hip replacements because it had gotten infected. Clearly, it still bothered him quite a bit.
He was curious about my ankle replacement, so not only did I find myself pulling off a sock for this stranger so he could admire my scar, but also whipping out my iPhone to show him the photos I’d had a surgical nurse take for me in the operating room while the front of my foot and ankle area was splayed open with retractors. Gory, to say the least. Fascinating…but gory.
At some point the man said to me, “You know, you ought to write a book. You seem to have a great attitude about your joint replacements and you obviously know a lot about the recovery process.”
“Interesting that you should say that,” I replied, “because I actually have a manuscript underway.”
“Really? That’s terrific. But I want to tell you something: make sure it’s mostly stories rather than some scientific or technical book. The personal stories are what people like me need.”
Funny, but that was actually one of the questions I’d been wrestling with as my writing momentum subsided the past few weeks. Did anyone really want to read stories about another person’s experiences with joint replacements? Or did they just want the tips and tricks for surviving the process that I had been listing at the conclusion of each chapter? Here, it seemed, was my answer. From a doc, no less!
“Let me ask you something,” he said, his tone a bit conspiratorial. “You ever feel suicidal during this whole process?”
“Suicidal? Not quite. But wishing I were dead? Absolutely,” I said. “But it never got so bad that I was actually plotting how I might check out.” He shook his head in understanding, seemingly vindicated.
“At times,” I continued, “my sense of despair was overwhelming, despite having a great husband and a kid I adore. Usually it happened when I was overcome with physical pain and a sense of hopelessness. Throw in a bunch of meds that mess with your brain chemistry and, yeah, I definitely felt like death wouldn’t be such a bad thing at times.”
“Totally get it,” he said, seemingly gratified that I, too, had inhabited the same dark place he was still grappling with. “I mentioned that I was feeling a bit suicidal to my sisters a while back,” he added. “They couldn’t handle it. They sort of freaked out. In a weird way, it’s nice to hear that someone else who’s been through as many joint replacements as I have also dealt with hopelessness and depression.” (I made a mental note to include a chapter about despair in my book manuscript.)
The air temperatures were rising, so we both made a move to leave. He asked for my email address in case he had other questions or needed the ear of someone who understood what he was going through. I gladly gave it to him, and I suspect I’ll run into him on the trail again as well. We said our farewells and parted ways, RuPaul trailing behind me, Lily following him with her tennis ball in her mouth. Despite the sweltering heat during my walk home, I was buoyed by the simple, yet meaningful, human interaction I’d just shared with a stranger who’s on a similar path to mine.
And that’s when it hit me: he was my sign!
I had never before taken the time to sit on that bench by the pond, preferring instead to keep moving along the trail lest my new ankle stiffen up or my other ankle that’s awaiting replacement lock up. But this morning I did just that: sat on the bench by the pond for the first time and relaxed.
I hadn’t mentioned my manuscript to him. He simply kept asking questions about my health circumstances and I kept answering them. He hadn’t come across as pandering or making idle conversation; he seemed genuinely interested in my perspective. He also struck me as a fellow mobility warrior in need of a bit of encouragement – precisely the type of person for whom I intended my manuscript.
During our conversation, he had admitted that he was a bit despondent over all of his health challenges, but he was eager to have a shift in perspective. I remember all too well that same feeling, the desperation of wanting – no, needing – to find others who’d walked the road of multiple joint replacements before me, if for no other reason than to gain a bit of hope.
Sometimes, simply meeting someone who truly understands what you’re going through because they’ve been there themselves can make all the difference in giving life – and your recovery process – your best effort for one more day, one more physical therapy session, one more walk with the dog.
I awoke after my second total knee replacement to learn that all had gone well with the arrival of Mary. That’s the new knee’s name: Mary. George is my first TKR, the left one. Mary is the right. Next would come Bert, my left ankle replacement, followed by Mr. Gower, my right shoulder replacement. And if you’re not a big It’s a Wonderful Life fan, then you should know that George, Mary, Bert, and Mr. Gower are all characters from this classic movie. And with that bit of film trivia, you’ve likely figured out by now that I am a huge fan of the movie (as also evidenced by the title of my first book, Zuzu’s Petals: A True Story of Second Chances). Thus, I have named all my new parts after characters from said movie. Weird, I know, but to each her own, right?
My overnight stay in the hospital was uneventful. I already knew the drill, so nothing was surprising. I ordered the same dish from the kitchen that I had during my previous stay six weeks earlier. I encountered the same routine with visits from the physical therapist, anesthesiologist, surgeon, and physician’s assistant. I even got one of the same terrific nurses from my first joint replacement stay.
I went home the next day with both Jeff and my pal, Liz, who had flown in from California to help. After realizing how hard it was for Jeff to see me in such pain after my first knee replacement, Liz and I had hatched a plan to send Jeff into nature – aka, the closest thing to a church my husband will likely ever set foot in – during the early part of recovery with my second knee replacement. Jeff was thrilled, though he would need to see that I was home and safe before feeling comfortable enough to leave for a few nights. With his backpack loaded in the back of our SUV, Jeff thanked Liz one last time and kissed me goodbye.
Liz cracked a bottle of wine to enjoy while we both dove into the meal that had been delivered that day by one of my local pals. Liz and Clare ate in chairs in my home-office-turned-recovery-room and I stayed in bed, already aware of how tough that first week post-op with a knee replacement can be.
I kept myself as medicated as was allowed, tracking each pill on a chart I kept nearby. Because I had had such a rough experience with my first knee replacement, not to mention that I was still in shock from RuPaul’s accidental electrocution two nights earlier, I had asked my doc if I could take Valium for the first week of recovery, along with all my pain meds, muscle relaxants, and stool softeners. He’d said that would be fine.
The next morning, I awoke around 7 am, lingering in that middle place between sleep and being fully present, slowly grasping the reality that I now had two new knees, both of which were killing me at the moment. I took my morning meds, hoping I could give them a few minutes to kick in before I wrestled my way up to standing. Using my yoga strap, I maneuvered my first leg to the side of the bed. It was painful; and that was with my older new knee. Oy. Then I lassoed the strap around my second leg, the one with Mary. Got that leg over the edge of the bed and sat resting for a minute. I had pulled my walker in close for the painful process of standing when my body internally screamed at me: I have to pee! Stat!
I was wearing a loose night shirt, T.E.D. compression stockings, no undies. Fourteen feet separated me from the toilet in the next room. Fourteen short feet. Fourteen feet that would’ve been a breeze on any other day, but not necessarily the day after leaving the hospital, the day the nerve block wore off. I struggled to stand in a frantic, herky-jerky manner, gripping the walker as if my life depended on it, willing my bladder to hold on, dear god just hold the hell on!
In great pain and with both Clare and Liz still asleep, I shuffled across the carpet of my office toward the door. Nine more feet to go. Made it to the hardwood floors just outside the bathroom. There was RuPaul, wagging his tail nervously behind the gate Jeff had installed to keep him from coming into my room or bathroom during those first few days. Ru usually slept in our master bedroom upstairs, but with each of my joint replacements, he appointed himself my overnight nurse and would sleep in the closest spot near me, in this case, by the gate that separated us now.
“Sorry, buddy. Gotta pee,” I said, shuffling one foot closer to the bathroom. Four more feet to go.
And that’s when it happened: what I imagine one’s water breaking during pregnancy would be like, had I had a normal pregnancy (hint: I did not). I stood in a puddle of pee, still clutching my walker as the compression stockings soaked up my urine. What was there to do? I wept. Because it all felt like too much at that point. The dog’s near-fatal electrocution two nights earlier, this third of three significant orthopedic surgeries within three months, the pain –Jesus Christ, the pain! And now the pee. If there was ever a “just shoot me” moment during all of my joint replacements, it was then.
I stopped weeping and stared at Ru, now wagging his tail and straining to reach me with his snout over the gate. I shuffled through the other half of Lake Urine and petted my concerned companion, feeling all the worse for having not been there to pick him up at the animal hospital when he was allowed to come home. I knew I couldn’t move the gate because RuPaul would likely track my urine all over the first floor. Plus, there was no one there to control him and sometimes 85 pounds of immature, Great-Dane-sized poodle doesn’t mix well with a couple of brand new knees. And by sometimes I mean always. I had to leave the gate in place.
I slowly turned and shuffled my way back to my bed, pee be damned. I didn’t have the strength to find a towel and throw it on the floor. The mess would have to wait. I grabbed a pair of sweatpants from the stack of clothes on the desk and placed them on the corner of the bed before lowering myself back down on the mattress. There was no way I could reach my feet, let alone pull off a pair of tight, pee-sodden compression stockings, so I put my soggy feet on the sweats and laid back in bed. Then I texted Liz:
Clean-up on aisle five. Sorry, lost all bladder control right outside the bathroom door. Went back to bed. Aren’t you glad you came to be my nurse?
I fell back asleep. It would be a few more hours before Liz awoke. (Fortunately for Clare, she managed to stay in bed even longer, the coolness of her basement bedroom and the lure of summer break allowing for extra-long sleeps.) Without a hint of annoyance or revulsion, Liz cleaned the mess outside the bathroom and peeled the dry but smelly T.E.D. hose off my legs. She could not, however, resist making a few pee jokes at my expense.
I had no more incontinence that day during my trips to the bathroom or to the den to sit in my recliner and watch a movie or chat with Liz and Clare.
At bedtime, I made it through my nighttime routine and again fell into a deep drug-induced sleep, a respite from the constant throb of pain that lay beneath the surface of the woozy daytime opioids. I slept soundly until the early hours of the morning, awaking to take my pain meds before attempting to sit up and move to the bathroom.
Once more, the minute I sat upright, the need to pee urgently demanded my attention. I frantically grabbed my walker and, with great difficulty, made my way to standing before shuffling toward the door. And, once more, guess what happened? You got it. Another clean-up on aisle five. This was no longer mildly funny; it was annoying.
This time, however, Liz was already awake and making coffee in the kitchen. She cleaned up the mess and helped me get into the walk-in shower where I sat on my indispensable shower chair. Let’s face it, by then I was smelling like the New York City subway – in summer – and it was time I attempt my first post-op shower for everyone’s sake.
I handed Liz my nightshirt and in exchange she handed me the box of Glad “Press’n Seal” plastic wrap, which I carefully wound around my new knee to keep the water out. I sat for a long time allowing the warm water to run over my body, long enough that when I was ready to get out of the shower, my feet looked like a pair of purple boots. It was clearly time to elevate my legs, but damn that water felt amazing. With a clean nightshirt and a pair of fresh T.E.D. hose, I sat in my recliner and ate some food that Liz had reheated.
So guess what happened the next morning? Yep, one more clean-up on aisle five. At this point, Liz sent Clare to the store for adult diapers. I think the politically correct term is something like “disposable incontinence pants” and somehow saying that is supposed to help those of us who need disposable incontinence pants retain more dignity. Ha! Listen, once you’ve spent some time in the ICU with everyone and their grandmother poking and prodding and wiping and washing you, the concept of “dignity” seems fairly laughable. I have yet to recover any sense of modesty in front of medical professionals. Not sure if that’s a good thing, but it is what it is.
The following morning, wearing my uber-creepy disposable incontinence pants, I once more made a sprint for the bathroom, “sprint” being a relative term. Yet again, four feet from the toilet my bladder let loose, my pants saturated, urine leaking onto the hardwood floors. Now I had not only a mess on the floor but a mess in my midsection. Liz? Clare? Anyone? Anyone at all?
Later that day, my mother suggested I call the pharmacist and ask him if any of my meds might be causing this new inability of my bladder to keep it together until I made it to the toilet in the morning. I didn’t think much of the suggestion since I had taken all of these medications before without incident. But I called anyway, motivated to get past wetting myself.
“So it only happens first thing in the morning, right?” my pharmacist asked.
“Tell me what you’re taking at bedtime.”
I listed off my medications.
“Wait,” the pharmacist interrupted. “You said you’re taking a muscle relaxant and a Valium at bedtime?”
“Yep. I still get spasms with my other bad joints and the muscle relaxant seems to help calm my whole body. And the Valium is because the first knee replacement freaked me out so much I asked my surgeon if I could take five milligrams at night. But I’ve taken Valium a few times before so I know my body is okay with it.”
“Lauren, you do know that Valium is also a muscle relaxant, don’t you?”
(Insert sound of crickets here.)
“Um, no. I thought it was to help your brain calm down.”
“Well, your brain is a muscle. And your bladder is too. So you’re basically taking a double dose of muscle relaxants right before you sleep for, what, six hours?”
(Cartoon lightbulb lights up over my cartoon head.)
“I’d suggest taking one or the other at bedtime, but not both,” he said. Try that for a couple days and see what happens.”
That night, I left the Valium out of my bedtime cocktail. Slept like a log even without it. Awoke in the morning with a full bladder. Relieved myself – not on the hardwood floors, but on the toilet. Remarkable. #idiot
Suffice it to say, I dumped the idea of lowering my stress with Valium. In fact, I dumped the other muscle relaxant as well, realizing that the pain meds alone were enough to allow me to sleep through the deep ache that accompanies the early days of a knee replacement. Lesson learned.
And, thankfully, I haven’t had to put on an embarrassing pair of absorbent paper pants since then.
It only takes one long-term stay in the intensive care unit to turn a person into a bit of a basket case when it comes to hospitals. I’m 19 years past my six-week stay in the ICU and still have to pop a valium just to walk through the hospital doors on the morning of each of my surgeries – 9 since my ICU stint: 8 orthopedic and 1 for breast cancer, which, weirdly enough, turned out to be the easiest of the medical challenges I’ve dealt with during the past decade.
A few years after my near-fatal illness with my first and last pregnancy, I came upon research that revealed the strong likelihood of having PTSD – posttraumatic stress disorder – if one survived HELLP Syndrome, which I had. I remember balking at the notion that I had some underlying pent up trauma in my system waiting to pounce. Nonsense! I’m fine! was my typical response whenever the topic came up in various discussions regarding preeclampsia, eclampsia and HELLP Syndrome. Optimism has always been a strength of mine, but it has also been a curse that leads to denial and lack of attention to particular issues.
Eventually, however, a few clues made their way into my psyche, the most memorable one happening seven years after that fateful pregnancy-related clusterfuck. Namely, I visited a new doctor and required a blood draw. Despite having informed the receptionist that I was a “tough stick” since surviving D.I.C. and would need their most experienced nurse to draw my blood, they set me up with a woman barely out of high school who had been on the job for all of three days. Not wanting to be perceived as a problem patient, I didn’t protest. That is, until she’d stuck me no less than five times without any success and I burst into tears. Oh, but not just tears. Despite my tendency toward stoicism, I also erupted in an uncontrollable, loud, and messy tirade about medical professionals never listening to patients, poking and prodding them without regard to what they’re going through, not listening, poking, hurting, prodding, hurting more, ignoring, not listening. I even stunned myself as the words were streaming from my mouth, surprised at the ferocity of my outburst.
Well, honey, let me tell you, I’m pretty sure every unsuspecting patient in the waiting area was listening because they couldn’t help but hear me. I only calmed down when the nurse with actual experience moved in and drew my blood with efficiency. I walked out with tears still wet on my face and, once in my car, I proceeded to cry and pound the steering wheel and talk to myself like a madman for another half an hour before I was able to drive myself back home. PTSD? You bet!
So if a simple blood draw could send me into shockwaves like those, imagine how hard it was for me to calmly walk into a hospital for what would involve IV needles, let alone being cut open. Funny thing is, once the IV is in place, I’m fine. The surgeries themselves don’t scare me because I’m under anesthesia. Hell, I don’t even care if the folks in the operating room want to make my inert body dance the Hokey Pokey once I’m under. In fact, I’ve dared them to do so and film it on my iPhone for me. (To date, none have taken me up on my challenge.)
I had never experienced Valium, or any sort of muscle relaxant, until I was getting some dental work done in my early 40s and was a bit squeamish about the removal of my old dental fillings. My dentist prescribed two doses worth of the medication for me and my nerves were as calm as a gentle spring breeze when I walked into his office for the treatment. So when my joints started to fail me and the orthopedic surgeries began, I decided to ask about popping a Valium the morning of each surgery, again, not so much to quell surgery fears as to quell needle fears. (Although no food or liquids is permitted the morning of surgery, you’ll get a pass for a small sip of water to down any necessary medications.) It worked like a charm and I’m certain the hospital personnel found me to be a much more compliant and pleasant patient than I would have been without a little prescription help. This has now become part of my pre-surgical protocol. Surgery alone is anxiety-inducing enough, and if you’ve got some prior hospital experience or other fears that tend to fuel your apprehension, why not take steps to assuage it, right?
There are plenty of other things I do to calm my nerves for the hospital pre-op procedures. I always take my Bose headphones and an eye mask with me. Sitting in the waiting room, I put on calming guided meditations or simple wave sounds and meditate until I’m taken back to the pre-op area to get started.
Even there, I will keep my eyes covered and my ears tuned to the music or meditation, not on what the nurses and docs are saying as they take my blood pressure, get the IV going, and have me sign what feels like the amount of paperwork one would need to take out a mortgage. I always tell the nurse overseeing my pre-op procedures to tap my arm if she needs me to remove my headphones and pay attention to her. They likely enjoy having a quiet meditative patient to better focus on their prep work, so my headphones and iPhone, it seems, provide a bonus to everyone involved.
Now let’s discuss warm blankets. I love them. And hospitals have them. If offered one, I suggest taking it. Some hospitals even have these gizmos that are like reverse vacuum cleaners that pump warm air into a thin mattress-like paper blanket, which stays warm as long as the machine is running. Score! To me, warm blankets are a must. You’ve seen how thin those lovely hospital gowns are, right? Nothing like a backside built-in air conditioner, not to mention loss of dignity involved in wearing one. Also, ever notice how chilled you get when the IV starts pumping fluids into your system? For me though, beyond the obvious physical heat warm blankets provide, they also feel like a nurturing hug to me.
My love of (ok, obsession with) warm hospital blankets likely stems from my interactions with one of the ICU nurses I encountered back in 2000. Although I was a tad crazy at the time – in polite circles this is known as “ICU Psychosis” – Susan reminded me of a nurturing mother who always knew the right thing to say or do to calm me. Beyond her demeanor, Susan also had the habit of bringing me fresh warm blankets at the start of her shift and the end of her shift, her version of hello and good-bye. In the weeks of hallucinations and indescribable pain I experienced, Susan was like a bright light shining amidst the storm of my ICU experience. On the night before I was discharged from the hospital, I made her promise to stop by and see me at the end of her shift with a different patient. I then fell asleep and, not wanting to disturb me given how difficult it was for me to rest while in the ICU, Susan came to say farewell but left without speaking to me. When I awoke a half hour after her shift had ended, I discovered four warm blankets all tucked around my body, complements of Susan. It felt like her way of saying, “You’re safe. All will be well. I love you. Goodbye and good luck.”
As someone who chooses the surgeon over the hospital or the medical practice, I’ve now been a patient at three different hospitals for my various joint replacement surgeries, for a total of eight different hospitals for my various overnight stays. One of them, OrthoColorado, which is in Colorado, duh, took the prize for best check-in and pre-op experience.
Owned by a large orthopedic practice in Golden, OrthoColorado has perfected the check-in experience, starting with the ski lodge-esque lobby boasting a large fireplace and an abundance of gorgeous fresh-cut flowers that I would later learn are actually damn good fakes. There are no mauve walls dripping with bad art. The look is as tasteful as it is calming. This well-thought-out physical environment immediately put me at ease about the surgery that would take place an hour later. (But let’s be honest: Valium was also helping considerably.)
The check-in process was more like sitting with the concierge at a fine hotel to plan activities during my stay. There was no leaning against an ugly institutional counter while a bored person behind a computer asked for my ID without so much as pretending to look up at me. I was led to a private area and invited to sit in a comfy leather chair while running through the requisite paperwork and process. At the conclusion of checking in, I was given a special code that would appear on the large screen in the lobby with any news about my progress throughout my stay, keeping my equally antsy husband in the loop. While I was back in the pre-op area, it would list me as such. Same with my move into the operating room and then to the post-op area before moving to an overnight room. Keeping the loved ones of patients informed is a huge relief for them, while also limiting the number of nervous people interrupting the staff for updates. Win-win!
The piece de resistance came, however, once back in the pre-op area. Yeah, that place where someone was going to stick me with a big fat needle to get my IV fluids started. Before I could launch into my “I’m a really tough stick and I need someone with tons of experience inserting my IV” schtick, I was asked by the nurse if I’d like a foot rub.
A foot rub? Are you serious? Why yes! I’d freaking love a foot rub!
So in came the massage therapist, I kid you not, who gently rubbed my feet and carried on a conversation with me, while that sneaky nurse managed to insert my IV needle without incident. Color me impressed. Since I had earlier shared my fear of needles with the “concierge,” the folks in the pre-op area already knew to set me up with a lidocaine shot to numb the area (much tinier needle) prior to inserting my IV and to have their most experienced nurse do the actual IV stick. Not only that, but given my needle-phobia, they called in the massage therapist. Now that’s anticipating a patient’s needs! It was the complete opposite of my PTSD moment mentioned earlier. When my husband came back to see me in the pre-op area, he found me laughing with a gaggle of medical professionals, all of whom would’ve never known I was a bit of a freak about hospitals.
In addition to foot rubs, another thing you may be offered during the pre-op phase of your joint replacement is an optional anti-nausea patch. If you can tolerate them, I’d suggest a hearty Yes, please! Having been through numerous surgeries by now, I recall having come out of several of my earlier surgeries with the distinct desire to vomit. Ginger ale and crackers were offered in an attempt to quell my upset stomach. However, after I’d been introduced to anti-nausea patches, I discovered it’s much more pleasant to proactively avoid the nausea rather than to deal with it once it hits. Take. The. Patch.
It’s not helpful to be anxious about the mere act of showing up for surgery. So if you’re like me – a bit of a freak about hospitals – I encourage you to take whatever steps are necessary and doctor-approved to calm your nerves prior to and on the day of your joint replacement. Going into surgery with a strong, optimistic, and calm attitude and disposition will help immensely in your recovery. So will foot rubs.
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.
The last seven years, I’ve been on a fascinating – and, at times, emotionally and physically painful – journey of losing mobility and dealing with chronic pain. Since beginning my process of “becoming bionic” in 2017 (three joint replacements down, two to go), my body often feels whacked from surgeries and meds and going under anesthesia five times within the last year alone. Sometimes, it’s difficult to find my true self in the occasionally tangled up energetic mess that is my body-mind-soul connection.
Suffice it to say, I have my Good Days and my Bad Days. Fortunately the ratio seems to be trending at 10:1, Good to Bad. So hey – no complaints. Unless, of course, it happens to be a Bad Day.
Today is a Bad Day.
I was unable to fall asleep last night until, well, 7:30 this morning. Got a whopping three hours, which meant my emotional balance, and thus my outlook on life in general, was in the shitter. Jeff and Clare were both out, and as I lay on the couch crying for no discernible reason (see: Bad Days, above), I contemplated calling my mother and asking her to pick up a pizza for me so I could eat my emotions – despite the fact that I had recently asked her to ignore me if I requested anymore pizzas. (During these past five weeks of non-weight-bearing recovery from my first ankle replacement, Mom has been my PT Appointment Chauffeur, Grocery Shopper, and yes, Pizza Retriever.)
Just as I was about to dial Mom’s number, the front door opened and a friend I don’t get to spend much time with strolled in unannounced carrying a quart of healthy homemade soup. She breezed into my kitchen as if it were her own and put the soup on the stovetop before riffling through my cupboards and drawers to find a bowl, spoon and napkin. She then delivered a hot nutritious meal to me on the couch. A completely unscheduled, yet perfectly timed, visit.
She wasn’t able to stay long, maybe a half hour max. But in that brief period of time she managed to completely shift the trajectory of my day with her positive energy, some meaningful conversation about learning to live with uncertainty, and yes, her soup. I felt as if I’d been graced with a visit from the Mary Poppins of food for the soul.
Today, as it turns out, was a Good Day. Thanks, Michele.
When my daughter and I arrived in Los Angeles last Saturday afternoon for college interviews, we drove straight to her Fake Aunt Liz’s home in Laguna Beach. (Well, we might’ve made one quick pitstop at Del Taco so Clare could experience one of her mother’s fast food cravings from my LA days.)
The thing about Liz is this: as long as we’ve been friends (24 years) she’s always wanted what she called her “Granny Cottage” – a small, efficient and impeccably furnished dwelling, the complete opposite of her former Berkeley mansion that was something straight out of Architectural Digest.
Her Laguna Beach home is just that: a tiny two-bedroom cottage with an even tinier back patio. Yet the feeling in her home is what I’d call zen elegance. She really has a knack for turning any ordinary house into a stylish home. (I’ve been the recipient of her “Drunk Shui” talents in several dwellings. A few glasses of a dry Provencal rose, and Liz starts rearranging your furniture, books and knick-knacks, ordering you onto Craigslist to find this or that. Once, she even Drunk Shui-ed our entire living room a week after foot surgery.)
To maintain her Granny Cottage lifestyle, Liz lives like the minimalist she is. If something doesn’t get worn in, say, a couple months, she passes it along to someone else. If she doesn’t like something she bought, even if it’s only a few days old, it too shall be passed along. So when Clare and I arrived and Liz said, “I was cleaning out my closets yesterday,” I laughed. Her closets are already as neat and tidy as the non-closet areas of her home. What the hell else was left to clean out?!
“I was cleaning out my closets yesterday and found the boot from my bunion surgeries two years ago.” Then she ducked into the guest bedroom and emerged with said boot in hand. “Would this be helpful to you at all?”
I’ve been the recipient of some of Liz’s cast-offs in the past – blouses, yoga pants, etc. – but she’s never offered me an orthopedic boot before. Then again, Liz has watched me these past six months as I underwent first an ankle surgery followed by a total left knee replacement followed by a total right knee replacement. She also knows my ankles are next in line for joint replacements, which cannot commence until I’ve recovered and strengthened myself adequately following the back-to-back knee replacements. And frankly, I’m thrilled my surgeon said as much because the thought of going under the knife one more time this year was a bit daunting.
As much as I’m happy to wait until January to begin the ankle replacement surgeries, I’ve been limping around in pain due to the lack of cartilage in both ankles. The left one, in particular, is remarkably messed up despite already having had four loose bone bits removed during March’s surgery. I’ve tried braces and shoe inserts and even new orthopedic shoes that are so ugly you just know they have to be good for you, right?
None of them alleviated the severe pain in my left ankle.
“Let’s give it a try,” I said, hiking my pant legs up and tearing at the velcro straps of my ineffectual ankle braces.
With my crappier ankle completely immobilized by the boot, I stood, my cane in hand. Tentatively, I walked across the room. Then I walked back, this time without the cane. I noticed I was standing straighter, even able to roll through my booted foot as I stepped – a feat that, heretofore, would’ve brought on stabbing pain and more than a few f-bombs.
I wore Liz’s hand-me-down boot the rest of that visit and by the end of four days was thrilled with my ability to walk – almost like a normal person. I brought it back to Boulder with me and have been wearing it ever since. And guess what? Now I can walk anywhere, more or less, without my cane. Just me, my boot and one heavily cushioned Hoka sneaker.
A few days ago I noticed something fairly significant. For the first time in years, I was not in pain while moving through my day. Sure, my new knees still feel alien and stiff and tend to ache by bedtime. But the pain from joints so worn down there was actually a hole in one of my knee bones where there isn’t supposed to be a hole? Gone. The pain in my Really Bad Ankle (as opposed to my Moderately Bad Ankle)? Gone. At least while wearing my new favorite boot. And that’s good enough for me.
You see, in a word, pain sucks. It makes frustrated sourpusses of the most optimistic among us. It often prevents us from working or traveling or even focusing on anything other than, well, pain. And when that pain comes in the middle of the night, when it wakes us from sleep, it tends to bring dark thoughts: that the pain will never end, that recovery is impossible so what’s the point in even trying.
Twice since getting my new knees, I attempted to do the grocery shopping only to abandon ship partway through due to ankle pain. Yet three days ago I went to Whole Foods – the big one – with my new boot and no cane, and made it all the way through the task, including carrying the grocery bags inside once home.
I almost cried with relief over this palpable sign of my life returning to me after more than five years of being sidelined: leaving my full-time work, minimal travel, experimentation with countless approaches to healing that didn’t heal me, withdrawing from the world, and rarely making plans for fear I’d have to cancel anyway because it might turn out to be a Bad Day thanks to autoimmunity or osteoarthritis or both. In other words, five years of working really hard to maintain a positive outlook when inside I felt anything but.
I can’t believe I’m actually writing a story about a freaking orthopedic boot. But truly – this silly, ugly, clunky boot feels like a gift from the gods (assuming the gods are all named Liz). It feels like a preview of better – pain-free! – times to come.
It feels like hope.
* * * * * * *
Download a PDF of the first 4 chapters of Lauren’s memoir, Zuzu’s Petals: A True Story of Second Chances, free. Click here and go to the link below the “Buy the Book” button. Zuzu’s Petals is also available on Kindle. Hardcover signed and inscribed copies are available at www.laurenwardlarsen.com. Happy reading!
I know how lucky I am to have survived a near-fatal pregnancy 17 years ago. I know that most women who go as far over the edge as I did with eclampsia-turned-HELLP-Syndrome don’t make it out of the ICU alive.
Six weeks and 203 pints of blood after my ordeal began back in 2000, I was discharged from the hospital – a “miracle” by some standards. But there was a long-term price to pay for beating the medical odds and that bill came due about seven years ago.
During all the internal hemorrhaging a decade earlier, a necrotic process had taken root in my major joints – ankles, knees, hips and shoulders – resulting in difficulty walking, chronic pain and several labrum and meniscus surgeries.
I was also diagnosed with an autoimmune illness similar to Rheumatoid Arthritis (Ankylosing Spondylitis) and began giving myself weekly injections of low-dose chemotherapy to keep my inflammation levels under control. I ate my vegetables, drank my kale juice, and limited my pizza intake. (I’ve had a lifelong love affair with dough, tomato sauce and mozzarella.)
But I was in denial – deep, deep denial – about the inevitable deterioration of my major joints when it was determined that pretty much all of the cartilage was gone from my shoulders…and then ankles…and then knees (the hips are still working hard to hold their own). I made it bone-on-bone for several more years. I swam. I did a gentle-but-restorative form of yoga known as Kaiut. (Most of the positions are done sitting or lying on the floor, so Kaiut is perfect for me.)
I assured myself that my Kaiut yoga practice would save me from having to undergo the 5-8 joint replacements that my orthopedic surgeon warned me I’d eventually need. He said I’d know when it was time. I bet him ten bucks that I’d avoid all replacements through yoga. He said he hoped I was right.
Turns out I was wrong.
In January of this year, I was finally able to admit that I did, indeed, need to begin the process of replacing my major joints one by one or else face the rest of my life in pain and, most likely, in a wheelchair. I began with the knees, six weeks apart, this past spring. It was as (temporarily) hellish as I had been warned. But I am convinced that all that Kaiut yoga – while it didn’t allow me to avoid joint replacements – did, in hindsight, help me prepare for them. And that was good enough for me.
Five weeks after my second total knee replacement, I received a text from Jeff, the owner of my favorite yoga studio, who is also my favorite Kaiut instructor. He offered to give me a free private lesson if my husband could get me there. (I was still unable to bend my newest knee enough to drive myself.)
We arrived three days later for that session. To say it was amazing would be an understatement. Jeff walked me through a series of poses, all of them lying on the floor with my feet on the wall. I was shocked at how much I could do even with the limitations of surgery. Two days later, I was back in class on a regular basis.
The sequence of Kaiut poses changes every two days, so I am never quite sure what each class will entail, let alone how much of it I’ll be able to do. But I love being there anyway if only to soak up all the good yoga vibes.
To get on the floor at the beginning of each class, I stack four bolsters against the back wall, sit on them and then slide the rest of the way down. At the end of class, Jeff and someone else hoist me up to standing by my elbows (my shoulders being too deteriorated to be pulled forward by my hands). If there’s a standing pose or a pose done on all fours, I do Legs Up the Wall instead.
Today, sandwiched between my husband and a pal, I heard Jeff give the cue to get on all fours. As I prepared to put my legs up the wall, I began to wonder if I was deluding myself in thinking that I could actually regain full mobility, imagined that I might be headed for a wheelchair regardless of how many joint replacements I get. Almost immediately I heard a very loud, very insistent voice in my head yell, “I REJECT THAT!”
And then I got mad. Mad at my medical circumstances, but madder at my lapse in optimism. And that was the moment I decided to try getting on all fours.
I rolled sideways from the bolster I was sitting on to another bolster as padding for my knees. I wound up diagonally across my mat, my hands on my husband’s mat and my feet on my friend’s mat. The thought of shifting my body and bolster so I was facing forward seemed too difficult, so I stayed put. They didn’t care. They could tell this was something big for me – my first attempt at putting weight on my new knees, now 10 and 16 weeks old. Trembling, I pulled another bolster under my arms and leaned forward, breathing heavily, straining to hold the position, catawampus though it was. My heart raced as if I were sprinting, but I was determined to hold my amended position as long as the others in class were sitting back on their heels.
As soon as Jeff said, “Now come out of the position and stand,” I flopped onto my back as if I’d just finished a marathon, ready to give myself a nice long Legs Up the Wall break. But no sooner did my ass hit the floor than Jeff was over at my side saying, “Nope, I want you standing too, Lauren. You can do this.”
My first three weeks back at yoga class, Jeff had let me do pretty much whatever I wanted, taking breaks as needed and ignoring the poses I couldn’t yet do. Standing poses – I assumed Jeff understood – were off limits given my crappy ankles, but this morning, he decided otherwise.
I’ve been working with Jeff for just over two years now, so he knows my mobility issues well. He asked my husband to help hoist me to standing and had me – and everyone else in class – move right into a pose facing the wall. That got me breathing even harder, my body having atrophied over the previous three months of recovery and heavy pain medications. At times, I couldn’t even keep my hands on the wall, letting them fall at my side while I leaned against the wall with my head (definitely not part of the pose). When we were finally instructed to release the pose, I was exhausted, but in the best of ways.
I hadn’t strained like that in my 2+ years of having a consistent Kaiut yoga practice, and I have to say IT FELT AWESOME! Not because I had strained, but because I had overcome my own mental block. That one yoga class this morning was more powerful than any of the physical therapy sessions I’ve had to date.
While yoga’s goal is typically inner peace, sometimes the goal should be discovering what you’re capable of by being challenged to go beyond your self-created limitations.
I’ve been preparing for my upcoming joint replacement surgeries: one shoulder, two knees and, most likely, a new ankle—all before the year’s end. Jeff and I rearranged the TV room, removing a chair and an end table in order to fit my new used stationary bike (for recovery) and my new used lift chair (for recovery from doing the stationary bike).
I had a lift chair once before, following six weeks in the intensive care unit after Clare’s dramatic and near-fatal birth. It was probably the ugliest chair I’d ever had in my possession, boasting an outdated maroon print the likes of which I’d never choose for normal furniture. But damn, I loved that chair. After awaking from a 14-to-16-hour sleep, I would, with Jeff’s help, maneuver from the hospital bed in our bedroom to the living room, where I would park my broken ass in that blessed lift chair for a couple hours until I was exhausted and ready for more sleep. But the funny thing was, no matter how high the lift chair would raise me toward being upright, I still needed Jeff to boost me those last five inches to standing. When we finally got rid of that chair, I felt I had accomplished a feat greater than any of the marathons I’d run in the past. I had graduated from needing a lift, so to speak, fully capable of standing by myself.
My new lift chair is, thankfully, not as ugly as the first one. And, being used, I found it on Craigslist for a mere $50. Which is about 1/10th of what I would’ve spent if I’d bought it new. My husband and I were set to pick it up yesterday, but the seller got busy with something else and said he had to cancel. Then my husband left town for a weeklong business trip early this morning, so the seller offered to deliver the chair to my home all the way from its current location 45 minutes away. At first, I was thrilled because these things are heavy as hell and I’m not exactly in lift-chair-lifting shape (see: joint replacements, above), and I really, REALLY wanted to get my in-home recovery area set up well in advance of my first joint replacement surgery on May 9th.
I thought about the seller’s offer to bring the chair right to my home. And then I thought about a new client of mine, a real go-getter of a woman whose only hint of past trauma is the substantial scar peeking out from her neckline. Twenty-four years ago, my client tried selling her car on Craigslist and wound up with a serial killer—a literal serial killer—coming to her home, purportedly to check out the car. At night. In the rain. My client sustained a broken neck and multiple stab wounds before a neighbor heard her screaming and called 911. (My client’s attacker was later caught and charged with the deaths of several other young women and is now serving life in prison.)
So let’s just say I was a bit nervous about having a stranger deliver a used chair to my home. I tried reading into the seller’s text messages. His two young daughters were mentioned. His mother was mentioned. His work and class schedules were mentioned. All details that indicated he wasn’t a serial killer. Then again, anyone can lie in a text, right?
But I really wanted that chair, wanted to cross one more item off my pre-surgery to-do list. So I said I’d be delighted to have him deliver it. And then I made sure someone was here with me. And I kept RuPaul home from doggie daycare—not that poodles are known for their prowess as bodyguards, but I figured it couldn’t hurt to have a (not so) menacing dog in my presence.
The seller—Jay—arrived this afternoon with the lift chair in the back of his run-down pickup truck. He walked with a limp, but was strong enough to handle the chair with the help of a neighbor of mine. And then, as I am wont to do, I started asking him questions about his need for the chair. What can I say? I believe everyone has a story and I was curious about his. In other words, I’m nosey.
At 30 years old, Jay began experiencing searing pain in one of his hips. He reported the pain to a doctor, who recommended an MRI. But Jay had no health insurance and couldn’t afford the MRI, so his doctor loaded him up with opioid prescriptions and sent him on his way.
More of Jay’s joints began to deteriorate and his level of pain continued to increase, as did his dependency on the pain medications. When he realized he had a problem with addiction, he worked hard to get off the meds before turning to alcohol for escape.
“Alcohol ruined my life,” he said, humbly. No whining, just a deep sadness within his voice.
“When Obamacare came along, I was finally able to get the surgeries I needed,” Jay said. To date, he has had total joint replacements in both shoulders, both knees and both hips. He still has deep pain in his hips, and his ankles are shot too. I asked if ankle replacements were coming.
“No,” he said, somewhat resigned. “The next stop for me is a wheelchair.”
Jay is only 34 years old. My heart broke when he told me this.
I paid Jay twice the price he was asking for the chair, thanking him profusely for delivering it.
And now, I’m sitting in Jay’s chair—my new used lift chair—with a greater appreciation for the hardships that so many people face, day in, day out, often with no sign of relief on the horizon. Ordinary people with extraordinary challenges.
I’m hopeful that one day I can offer assistance to people like Jay, people who are struggling with their own medical burdens. Because everyone needs a lift sometimes.
Ever get in the car and just start driving for hours on end, not even sure where you’re headed?
Yeah, me neither.
Yet that’s exactly how I feel lately. It’s not that I’m some sort of baby boomer control freak (she’s lying). Ok, maybe a few echoes of that persona still persist from my 20s and 30s. But Life has done a great job of showing me that sometimes the best things are those we never planned, controlled, pitched or imagined.
My husband? The guy sent an 8-page letter threatening legal action to the corporate conglomerate I’d recently joined (truth be told, we were being rather dickish to his smaller start-up). I was copied on that letter. A few months later, we were engaged. And in five days, we’ll celebrate 19 years of an overall pretty damn good marriage. Didn’t see that one coming!
My kid? The one you’re sick of seeing me post about on Facebook? Not what you’d call a planned pregnancy. But clearly she was ready to show up and show up she did (in the most dramatic of ways). Now, I can’t even begin to imagine my life without her to share the fun. There is nothing I wouldn’t do for that creative and loving goofball of a soul. She totally rocks and I adore the shit out of her. Again, surprise!
Favorite work to date? A decade of blood donation advocacy and professional speaking that came out of the blue after nearly croaking and burning through San Francisco’s blood supply in record time (see “pregnancy” above). All began when an executive from Johnson & Johnson sat in one of my audiences and asked my husband to have me call him. A few months later, my occasional pro bono talks for blood centers and Rotarians had transformed into a full-time paid speaking tour, with no requirement to tattoo the J&J logo on my forehead, let alone mention them. Who knew?!
So here I am on a journey to fuck-if-I-know-where and I have no clue as to what it’s leading me to, if anything at all. It’s the journey of chronic, at times calm and at other times mind-numbingly debilitating, physical pain and loss of mobility–today being one of my more challenging days. (You know it’s bad when you have to leave your gentle restorative yoga class after only five minutes of what most able-bodied people would think wasn’t worth the time it took to pull on their yoga pants.)
This against-my-will journey has been underway for a good five years—the prior eleven being no picnic either where my wellness was concerned. But I had no idea that the road would get even bumpier than it already was. Pain has a way of coloring everything you do, see, feel, believe. Instead of the rose-colored glasses I wore in my younger pre-medical-crap days, too often chronic pain is like viewing life through tar-colored glasses. Dark indeed.
This journey has taken me to places I wouldn’t have otherwise explored, and for that I’m grateful. I love new experiences and marvel at the immeasurable ways to tackle and perceive this mysterious thing called Life. I’ve experimented with all manner of approaches to wellness from the mainstream (take this pain med and go away until it’s time for another surgery) to the downright laughable (if spending tens of thousands of dollars to experiment is your idea of funny). Some things work, some don’t. Among those that work, some days they do, some days they don’t.
The upside of pain is the noticeable increase in my sense of compassion for others, knowing that they may be masking their own pain—be it physical or emotional—much in the same way that I tend to do when I’m out in the world…or even at home with my family. (Hearing myself whine about pain bores me, so I’d rather not. Except now. In this post about pain.)
Pain also helps me connect with others with whom I might not otherwise, like the guy with the amputated leg who swims at my pool and who, like me, didn’t expect his health to take the turn it did. Or the older woman with whom I shared a water jogging lane recently. When I jokingly lamented about the activities I could no longer do, without an ounce of judgment in her voice she responded, “Well…perhaps we’re meant to do different things at different stages in our lives.” Sure, it’s a pretty simple concept, but her words helped me more than she knows.
And recently when pain and insomnia kept me awake all night and I blogged about it, I was flooded with emails from women who were dealing with their own physical ailments and the challenge of remaining positive—or even mildly optimistic—that goes hand in hand with pain. I spent days having interesting and, at times, laugh out loud funny email and Facebook exchanges with several of them.
So today, as I was driving home from the pharmacy with my pain med prescriptions after bailing on gentle yoga, I was struck with the thought that maybe, just maybe, there’s a point to all this bullshit. Maybe my own journey of chronic pain is taking me to a place where I will be able to answer the question: What’s it all about, (Alfie)? Could it be that perhaps—like those two months spent screaming and hallucinating and sucking up blood transfusions in the ICU sixteen years ago—this current and unwanted journey into the bowels of chronic pain is taking me to yet another awesome and rewarding place where I can grow as a person, share what I’ve learned, and maybe even help others as they face similar circumstances? At some point, will I be able to look back at these years of two steps forward, one step back, and say, “Aha! I get it now!”? Is that where this journey is taking me?
Honestly, I haven’t a clue. But for today—and with the help of a giant snuggly poodle, five milligrams of a pain killer, and the couch—I’m hopeful.