Parkinson’s — I’ve been on a grief journey for 10 years and didn't know it
I took the 9.15am on the 4th Jan 2013. I remember it well. It was the day after my 38th birthday. I hadn’t planned this particularly journey, although in truth, it had been on my mind for some time.
I was the only one aboard and despite blue skies and beaming sunshine, it felt like the calm before the storm. I didn’t know where this journey would take me. No one told me which direction to go. There were no signs. Or perhaps there were and i just ignored them. There were no announcements. I didn’t like not knowing. I didn’t like the uncertainty. I felt trapped. I was just hoping for a fast, direct route to ‘destination unknown’ or better still a return home.
I quickly realised the latter was impossible and that travelling into the unknown was the scariest journey I would ever take. At times, I didn’t want to know where I was heading but from the start it felt like a one way journey.
I didn’t want to look up to see where i was. I didn’t want to look out, fearing others would look back and see I was lost. I didn’t want to look inwards as I was scared what I would find. I didn’t want to look anywhere but down.
So I sat alone on this ride for many years. At times i found myself oddly content to be in this new found limbo but often i was riddled with anxiety. It felt familiar and yet unfamiliar at the same time. I could still feel the world around me. I felt even more sensitive to it. The world seemed normal in comparison. Occasionally people waved as I passed. I would smile and wave back, ashamed to admit I didn’t know where (or who) I was. I was embarrassed to ask for directions or seek guidance.
Eventually i asked a man in uniform, where we were heading, only to receive a confusing and vague response. It put me off from asking again. I tried to look it up on a map but i just couldn’t get my bearings.
As it turned out this was a slow journey, with many stops. At times it felt like the ride was going in circles, passing the same stop more than once and often getting stuck there. And so it went on for many years.
Until one day the world started to shake. People were worried and fearful, but it was a different kind of fear to mine. One that was common to all. Not like my fear, which was uniquely mine, or at least I thought. They started distancing themselves, something I’d been doing for a while. People stayed at home, scared to go out. I knew this feeling all too well.
They were united in their fear but also their determination, eventually cheering and clapping until one day, everyone went outside again. That collective will, had helped find the answer. And I while I didn’t share their relief in quite the same way, I did start to see things differently. The view became clearer and I suddenly realised i wasn’t alone on this ride. There were 10 million others with me, of all different shapes and sizes and all at different points on their own journey.
Eventually the world stopped shaking. But I didn’t. By this time others could see, but for the first time, it didn’t bother me (well not as much). It was almost a relief they could see the real me, I didn’t have to hide any longer.
I started talking to the other passengers. Well listening in silence at first, as I was still embarrassed. Of what, I wasn’t sure. I found we had so much in common. People had come from near and far, yet we all spoke the same language.
Some were travelling alone. Many were accompanied by their loved ones, yet still felt alone. When I looked around, I could see that familiar lost look in their eyes. It was an emotional mirror. I felt for them. I felt for myself. But I also realised just how far we had all come and what I had originally mistaken as fear, was actually courage.
Whether they were at the start or end of their journey, whether they knew it or not, they were all brave brave souls.
So I reached out a hand and tried to help where I could. In my own little modest way. Sharing experiences. Our stories were remarkably similar. It was uncanny. It proved as comforting to me as it was for them…
Eventually i stopped wondering where we were going, when we would get there, or even why we were on this journey in the first place. Instead i look upped and took in the breathtaking views that id been missing for so long.
I was learning so much on this journey and as i learnt more, i found myself becoming more forgiving of myself.
I was certain there were plenty of bumps to come, some dark days ahead but I could at last see… there was light at the end.
It’s a cliché to say but ever since that fateful day almost a decade ago when I was told I had Parkinson’s, it’s felt like one big emotional ride, full of twists and turns, emotional ups and downs.
It’s only recently however I’ve realised, that journey has been a grieving process, and as my neuro occupational therapist pointed out to me, maps directly to the established grief cycle, originally coined by psychiatrist Elizabeth Kübler-Ross
Something’s wrong (Denial) — I knew something wasn’t quite right for some time but it wasn’t until I developed a tremor in my left hand, that I decided (reluctantly) to get it checked out. Reluctant in the sense I didn’t want to be a ‘bother’ but also in the sense i didn’t want to know what was to come
Diagnosis Ping Pong (Anger) — i went from no diagnosis (‘cut down on your coffee’ the doc told me) to a misdiagnosis (‘we think its thyroid related’) to an actual diagnosis (‘you have Parkinson’s’). The uncertainty, the fear, the lack of any support made this year long process one of my low points
(Not) Moving On (Depression) — some would call this the newly diagnosed phase. The honeymoon period. For me i just went on with life. The meds proved effective. So effective, at times i could almost forget i had this condition! And so effective it helped me hide the condition 🙃 Telling people made it real. So i didn’t. I could count on one hand the amount of people i told in the first few years.
Coming Out (Bargaining) — it took a global pandemic and a lockdown to help me see things more clearly. I started to learn more about the condition and MY version of it. It was scary, depressing at times. Most of the time in fact. I do wonder sometimes whether it was this desire to ‘face it’ or whether it was fact that my symptoms were becoming more obvious that prompted me to tell more people. Perhaps a little of both but the reality was i couldn’t hide it any longer. I expanded my healthcare ‘team’. I learnt to reach out, which wasn’t easy. It’s a big step (i was jealous of people who could do this from day one.. it took me 7 years). I connected with other Parkies, in a way I was reluctant to do for many years.
Giving Back (Acceptance) — I’ve found acceptance is not one end point you reach (i still have days when i’m in denial) but it does feel like I’ve come full circle, or turned a corner at least. Without knowing it, part of acceptance for me has been about ‘giving back’. The bits of volunteering work I’ve done in the Parkinson’s community has helped me move on. After all the act of giving / volunteering is proven to stimulate dopamine production ..and us Parkies need that. So in a way you could say volunteering is a form of treatment.
Being diagnosed with an incurable degenerative condition is akin to a loss and like any loss, grief naturally follows. And while it’s not necessarily a linear path and there’s no prescribed interval length between stages, there does seem to be a common route from denial to some form of acceptance.
