The journey that still is

“Hi, I need to make an appointment” I say in my chipper lets get this done voice. At the other end of the phone is a new medical person and service I will attempt to cajole, convince and wrangle into getting me into their office as soon as humanly possible. Such is the state of American medicine that unless you have a catastrophic illness or a medical professional advocating for you, getting into anywhere for services is a multi-week or multi-month affair. I would of course argue that i’ve hit that sweet spot to qualify as a patient with a catastrophic illness. Having gone from a single cane gimping about nicely, while waiting for a hip replacement, to post hip replacement 2 canes and the occasional walker. And now after my total knee replacement solely the walker, because my shoulders can no longer handle the canes. It’s just plain old arthritis, but it’s effected all four of my major mobility joints and until I get my other knee and hip replaced I won’t be able to build back the strength to walk. That, I would define as a catastrophe, one that only artificial parts can reverse. But until they see me with their own eyes it’s hard to imagine it as an emergency. After all it’s my personal emergency that’s now three years on. I try to take all of these situations as a challenge to be overcome because arthritis pain is overwhelming my life and the path to less pain is surgery and it keeps getting snatched out of my fingers by what I perceive as glitches or twists of fate.

This time the glitch is my hemoglobin, it’s down and suddenly that’s become a sticking point in my getting surgery despite the fact it’s higher than it was for my last surgery in March, oy vey. They want me to do iron transfusions which would be fine, but, if my numbers are higher now than before why is this suddenly a stick in the spokes of progress. And this is not the first snafu that snatched another brass ring of total joint replacement from me. I was scheduled for this very same knee replacement, July 6th and in mid-June I got a call out of the blue saying that my surgeon was leaving the hospital and setting up shop elsewhere. My heart sank, and I waited another month and a half ticking painfully by, actively following up for an appointment and surgery date. Which I got last week an then these pesky pre-surgical labs put on the brakes on again.

While in my more optimistic frame of mind moods I might call this a “journey” it has been so convoluted and changed my life circumstances so much I felt sharing it was a way to fill in the details good and bad to those who have been part of my life, my work and those who might become a part. Coping with living and working as a handicapped human, is something I know I am not alone in. However unique the exact details of our own painful circumstances or mountains we’re climbing there are people out there like myself, driven by will and spirit to overcome the everyday hurdles that the average person takes for granted. I too once thought nothing about bounding down the stairs from my home office to my car to meet with clients or work offsite – now that I’m camped out in the 1st floor of my home dependent on a walker for every step this, becomes the kind of challenge you associate more with getting your 90 year old aunt to a family gathering. For me it is a triumph of choreography, patience, slow and deliberate movement and please god no steps. Even the simple act of getting a glass of water and taking it back to my desk became a challenge when you walk on your hands and have no third hand to hold it. An adult “sippy-cup” came to the rescue. It had been gifted to me a couple of Christmas’s ago and had been languishing in my cabinets, it became the solution to my hydration issues. I could nestle it in my walker bag and move freely from tap to desk without spilling a drop, victory. Then there are those obscure secret handicap tools you find out about when you’re in the rehab hospital like the sock-putter-onner, which is actually a fantastic little tool so you can get your socks on after a hip or knee replacement. Believe me you won’t be bending down and just doing it the way you used to for a very long time. And don’t get me started on toilet challenges, regular low toilets with no grab bars just make me want to literally weep. My older retired friends totally get this one, as I recently expressed my fear of low toilets to my mother’s dear friend as she drove me to physical therapy she laughed knowingly.

I intimately understand the Frankenstein parable at this point, as a handicapped person now who is more stitched together than ever as I wheel by the public on my walker I feel outside of normal humanness. Just a short few years ago I was in good physical shape, light aerobics a few days a week and dog walking every day. I was a single female homeowner of a 100 year old home in a city neighborhood with my sweet pack of cats and the most magical dog you’d ever meet. Out and about with friends often enough that the quiet weekends were equally relished. Then slowly the pain crept in, really just stiffness at first. I’d always had bad knees and knew they weren’t going to get through to my elder years long ago. I’d had a surgery early in my life on my right hip to fix a twisted ligament, afterwards the doctor asked me if there was any grinding. Of course 20 years later yes it was soon to begin grinding or more accurately to put me in a world of hurt. And those knees, they barely got me by but I soldered on till I couldn’t. I went to the doctor who had recommended the arthospoic surgery, he was now a top-rated surgeon and I said “you know how you asked be about grinding, well it’s happening” and he said it wasn’t there yet and sent me on my way. seven months later walking in on this time a cane I told his assistant surgeon I couldn’t take it anymore and in I went for my first joint replacement. They told me at that time, that my knees were actually worse than my hip, but the hip pain was overwhelming. Immediately after I was in heaven thinking all I had to do was get those darn knees fixed and I’d be golden. But, bam, after a few weeks of thinking I was getting better, progress stalled. I knew I wasn’t going to be really better till my knees got replaced and that really began a journey to finding out I also had a genetic neuropathy condition my brother and late father share. It weakens your lower limbs so the muscles atrophy very very slowly over the course of your life. It’s called Charcot-marie tooth or CMT, it’s related to muscular dystrophy and Lou Gherigs disease. I still don’t know how much it will effect me over the long run but it certainly explained the slow down in recovery, because people with CMT rely heavily on their knees and hips to compensate for the weakness they may have in their toes feet calves and ankles. For the moment I have set that specific challenge aside, except for the fact that expediency in my joint replacements is critical in the long run, but nothing about this feels expedient.

Scary, scary is this journey feeling i have about my transformation. Now critical parts of me are artificial, metal and plastic stand ins for the real thing and there’s more to come. I will light up a TSA machine like a Christmas tree when this is done. Will I walk? Well that’s the point of this transformation. Will I be able to convince my muscles that these new titanium and plastic parts are even better than the real thing, that’s to be determined. And there’s the important message I need to be telling myself that I will and can make my body do what I need it to do to become a semi-normal human again.

One bright spot has been that my fingers and brain are just as nimble as ever. When I’m seated at my desk zen’ing  on some graphic design, writing CSS to style a website or learning a new content management system I can completely forget my circumstances. It keeps me sane, it keeps me grounded. It reminds me that I am who I was and always will be. Even if the circumstances have made my world like a small pebble compared to the once globe trotting explorer I was. I didn’t lose me or the skills and talent my brain puts to use everyday. And that’s the big takeaway for myself, my clients, colleagues and the remarkably wonderful network of friends and family who believe in me. True I can no longer jet off to a last minute coffee and brainstorming session,  go onsite with a client, or chat up potential clients and colleagues at a networking event, but the work still comes out of these fingertips onto the computer keyboard and heck there’s always Skype, or Zoom, or Go to Meeting or whatever flavor of video teleconferencing. As my onsite and in-person meetings became tougher to pull off physically, I focused on remote clients. Working remotely with even my local clients, or asking if they could come here to meet, has been a solution for those that know my work ethic and skill level. But that’s not always a perfect solution for others and especially a touch sell to new clients. Believe me I get it – I loved in person meetings and collaborations and that is one of the limitations I find most soul crushing. But once my 2nd knee and other hip are replaced that will end the cycle of pain with each step and allow me to make significant strides. I will never be my young self but I can then punch my physical therapy up to 10. Currently I’ve been pretty religious about my 40 minute pt breaks twice a day, but that’s with pain, without pain there’s so much more I can do. I’ll bring my pool days back up to 3 and get the fins out to really work my lower half. Oh, OK see how that works if you’re always looking past the limits

look see I’m always looking past the limits to what can happen when I put my mind to it.

focus on strengthening  should be a temporary state

Last Summer one of my favorite victories was running a team of designers back east in Garden City, New York from here in my . A close friend and client, someone who’s business prowess put her in the C Suite over a career steeped in technology and business transformation, hired me to step in and help her wrangle a staff of designers while turning around the company brand. Essentially firing away on 360 cylinders, as I was the creative executor, overseer and production/project manager in tandem with an equally writer who did the same for the content side of the company. It really made me fell part of something again, sadly the company was not the best horse to put one’s money on and upper management was rather dysfunctional. Then after an acquisition by the Chinese it went poof. But that is just one of many adventures in remote/freelance life. It to has always been a changing ……….

Posted in Uncategorized.

Leave a Reply

Your email address will not be published. Required fields are marked *