When Steve was hospitalized for 15 days with transverse myelitis and 24 days in inpatient rehab there was no time to think about the next day. It was a moment-to-moment existence as we navigated what was to be an unknown and substantial change to our lives.
Featured image was taken in June 2023 at The Rock House for the Performing Arts annual music festival.
I began writing as a way to process my new role as caregiver. A role that I didn’t ask for or didn’t stop to contemplate. Steve would need care when we returned home, and I took up that charge. I now realize it is not the role of caregiver I am processing. It’s also our entirely new way of life and navigating a sudden and drastic change.
Change is a tough gig and it’s even tougher when it’s a change you did not instigate.
Steve was finally able to come home after 39 days, and we had no guidance from the medical field on what to do or what to expect. We did get a large number of drugs to be dispensed three times a day and I was taught how to hold Steve’s gait belt as we walked with his walker. Steve saw his neurologist shortly after returning home, told Steve he was progressing and to make an appointment in six months to see the nurse practitioner. Same conversation with his general practitioner.
On top of navigating the serious and rare neurological disease of transverse myelitis I lost my job, was denied unemployment and had a pre-cancerous lump removed from my breast.
Our lives now consist of outpatient therapy, going about daily tasks at home to get Steve as independent as possible and waiting for his myelin sheath to heal.
Oddly enough I feel a sense of calm about me. Let go and trust the universe. There’s no controlling this outcome as Steve’s healing will come on its own time. Steve may never get back to the same physical functionality he had, pre transverse myelitis.
What we can control is how we adapt to the change.
Yes, I wish this had never happened to Steve, but it did. Wishing, denying, and fighting this change will not make this transition any easier. Instead, we go with the flow, we keep moving and we create stability during change.
Instead of thinking of this life change as something that happened to us, we see it as something to work with. This is how I remain calm(ish). We can only control how we react to what’s happening at any given moment.
Life is slower. We are home most of the time. Outings to friends’ home for dinner is a real treat. We eat three homecooked meals a day. We walk, play games, and binge watch the Great British Bake Off. I read and write and walk 30 minutes every day. My sleep is better, and I’ve lost a fair amount of weight.
As Brad Stulberg wrote in his New York Times opinion piece: To thrive in our lifetimes — and not just survive — we need to transform our relationship with change, leaving behind rigidity and resistance in favor of a new nimbleness, a means of viewing more of what life throws at us as something to participate in, rather than fight. We are always shaping and being shaped by change, often at the very same time.
If you would like to read more about Steve’s journey (in his words) you will find his blog postings here.