It’s been six months since the nameless neurological demon took hold, and I remain no closer to a formal diagnosis.
The long-awaited MRI scan finally happened in August, but nothing specific emerged from the results, other than highlighting congenital clumps of veins which never grew right. This unique plumbing may be an interesting diversion, but as I’ve lived with it all my life both doctor and I doubt it’s directly related, even if the abnormalities are close to where I now perceive pain.
Meaning well, my GP believes this ongoing ailment to be nothing more than a prolonged tension headache (despite the excessive duration) and has chosen to suppress the symptoms instead of finding the cause. The latest prescription is Pizotifen, a serotonin-receptor blocker, which at least helps me remain functional without the paralysis of prior medication, even if things feel flatter than they should.
Not wanting to accept this in the long term, multiple overseas experts have been informally drafted courtesy of the extended ‘Daryl Support Network’. Independently, these specialists have come to the consensus that I may require a lumbar puncture (known more colloquially as an umlaut-free Spinal Tap) to extract cerebrospinal fluid for further testing. To expedite these investigations, I’ll be looking at going private if only for (pun unintended) peace of mind.
Without a legitimate diagnosis to fortify my case, support from the state has dwindled. My PIP application was rejected outright, and the bare minimum sickness allowance is soon due for reassessment. Any tolerance for torpidity swiftly expired.
But life cannot stay static, even under these circumstances. Despite the lack of answers I must continue, even if it feels that I’ve been fading into the void.
I’ve started to creep back onto campus in small bursts, for catchups and formal handover of my prior responsibilities. It has been wonderful to reconnect with students and faculty in person, and although overwhelming at times I find their energy to be a motivating kick up the complacency.
At the end of next month I will (hopefully) return full time to finish the last two modules of my Undergrad degree. I’ve worked hard on getting this far, so at the very least I can bring it through. As much as I’d still like to progress onto Postgrad, that all depends on what I’m actually capable of now. I will know for certain by doing.
While returning, I recall how I promoted the ‘Five Steps to Wellbeing’ as a foundational framework for others. Applying them to myself, I see how much I’ve lacked in sincere social connection outside the house. Internet friends can only go so far, and many soon disperse with little good news to share. Real interaction makes all the difference.
The second step, physical activity, has also deteriorated. Not only do my meds have the unfortunate side-effect of weight gain, a parallel dose of supraspinatus tendinitis (perhaps brought on by moribund mobility) has rendered my left arm far more feeble than I’d wish. So getting back out there is vital for my sense of self. Even if I cannot immediately juggle lighting fixtures as well as I used to, I can engage with the process required to return to form.
At the waning of the Hunter’s Moon, I was overjoyed to briefly meet, drink and dine with dear friend and occasional shaman Resl, who had travelled from Iceland by way of Oxford to visit me (receiving a tour of campus for her troubles). Although I still cannot quite believe she made such a personal journey, practically to my doorstep, I remain deeply grateful. A reminder and reconnection to those wild nights on the mountain, and a salve to the soul in the liminality of new beginnings.
It is through such company and conversation that I conceived the future, one still burdened by uncertainty yet determined by direction. A passion for life undiminished, and the will to create absolute.
Ever cautious over the years, I have squandered my time a little too willingly. Believing that helping others would be the surest way to secure my creative journey, I neglected my needs only to find reciprocation rare. I still have much to give, but maybe less time now than I’d care to admit to, so I must do so wisely.
Although the demon lingers without a name, I refuse to yield it the final word.
(Photography composited with personal CT and MRI scan renders.)
