a new year, a new site, and a not so new challenge....

Or the why the heck are you redoing your website one week from major spine surgery blog...

It might have been a strange choice, considering it all, to rebrand our website and launch this new blog at this moment in time. And I’ll admit it something of a gamble, but one imbued with a heavy dose of hope. If you haven’t been following along with us on some corner of social media, you may not know, but I’m about to undergo a spine surgery that could radically change my life. Very much for the better we hope but with a healthy dose of realism that things could go wrong in ways that impact the future of this place that we’ve put everything into creating. 

For the past twenty five years I’ve been dealing with a condition called Thoracic Outlet Syndrome, a rare affliction resulting from compression of veins, nerves, and arteries in the upper part of my chest. My particular flavor of TOS is caused by extra cervical ribs, a genetic anomaly of funky bonus bones in your neck. Many people who have these oddities never know, but some are quite large and ill placed which can have serious complications like mine. For me TOS manifests as radiating nerve pain in my chest, arms, and back; numbness and paresthesia, circulation issues that cause my hands to flush with painful blues and purples, difficulty gripping and lifting my arms, and a pronounced tremor in my hands.  As you can imagine this set of symptoms is not ideal for me as a person who draws stuff for a living. 

From my initial diagnosis in 7th grade through early adulthood I was able to manage things by avoiding lifting anything over ten pounds, taking care with repetitive motion, and heading back to PT when I experienced particularly painful flares. Unfortunately this regimen has become less effective as I’ve aged and in the past few years I’ve seen a rapid and progressive decline in the function of my upper limbs coupled with escalating and acute pain. What this means in real world terms: I went from being able to draw to my hearts content to working in short 20 minutes bursts totaling only a few hours a day. I became unable to lift my arms without my pulse falling off and found myself constantly dropping things when my hands would give out unexpectedly or tremble too much. Everything from chores to my morning ballet practice became difficult or downright impossible. 

It was abundantly clear to us that I was going to need greater interventions. I won’t bore you with the details of navigating the US healthcare system with a rare and poorly understood illness as a self employed person (if you’re on our site I’d guess you’d got a vivid imagination and can conjure a pretty accurate picture on your own), but it’s been a rough couple years. After many doctors and dead end referrals we ended up at Johns Hopkins Vascular Center. It was there, after extensive testing, that I was told I would need surgery….surgeries in fact to remove the ribs, the ribs below those ribs, and portions of my scalene muscles. The compression in my chest had become so acute that the vital subclavian arteries there were dilating under the pressure. 

Suddenly the focus shifted from preserving the function of my hands to ensuring that I didn’t suffer an almost assured sudden embolism or aneurysm. In some small way I found myself thankful for this admittedly horrible revelation because it took any guesswork out of deciding if surgery was the right choice for me. It became less about navigating best outcomes and pain management and more about simply not dying. The assurance that I likely wouldn’t live to see my fifties without radical intervention made going forward an easy choice, even if it is still pretty darn scary. 

Today I am a week out from my first spine surgery (February 3rd); where my very skilled TOS specialist surgeon Dr. Lum will be removing two ribs from my right side along with a fair bit of other unpleasant cleaning out of the metaphorical cobwebs. I know it’s going to be a rough road to recovery; even if I have an ideal outcome and am one of the fortunate 80% of patients who sees significant relief post surgery I’m still looking at a minimum 3 months recovery with intensive PT and levels of pain that I’m frankly trying really hard not to think about too much so I don’t lose my nerve. There is of course that chance of being in the 20% of people with less favorable outcomes (wide ranging possibilities like long term loss of limb function, lung collapse, nerve damage, or worse). The need for the intervention has become inevitable, but its still overwhelming to be facing a not as small as I would like possibility that I will lose use of my drawing arm. I don’t really have a plan if that happens or maybe I know that its better not to cross some bridges unless you must. I don’t know what the future holds, but I know that I have faith in my ability to weather great difficulty, in my husband and my communities desire to support me, and in the power of art to transcend even the most significant of limitations.

In the face of all this, maybe it is foolish to go on like normal. Rebranding our art business, creating fun new features, making big plans, prepping new releases, and dreaming larger than even. But this is who I am at my core. An optimist! A big believer in our ability to overcome even the most dire of circumstances! A person who has always been self reliant, and overly ambitious, and more than a little audacious in building and then tackling large projects. I believe because I have to. I believe because it’s in my nature. I believe because I know and feel deep down that I still have so much art inside of me that is meant to be made. I don’t want to be afraid to plan or afraid to dream, and so I choose not to. 

Here’s to something better and brighter (and hopefully little less painful) ahead,

Joelle