Around three years ago now my life took a sudden and scary turn.
I suffer from migraines and every now and then I have to get an MRI (to check I still have a brain, I assume). This time the MRI showed something small – maybe a smudge or a bad bit of data, but also maybe something else. So I had to go see a Neurologist.
I went, hoping (and mostly expecting) to learn it was nothing. But also a small scared voice in the back of my head was trying to tell me it might just be something, after all.
The neurologist listened, looked at the scans, and asked me a lot of questions. He ran a bunch of tests, physical and cognitive.
And then he told me that he was sorry, but he was relatively certain I had early onset Parkinson’s.
‘There is no cure’ were one set of words that stuck. ‘Do you have insurance?’ was another.
It was without a doubt, the scariest moment I’ve been through. He told me he wouldn’t make an official diagnosis, to give me time to go and get insurances sorted – life, and income protection (as I was self-employed). He put me on meds for Parkinson’s, told me we would only be able to tell if it definitely was Parkinson’s by the amount of deterioration we’d see in 6 months, and sent me home.
I drove home in a fog, trying to figure out how I would tell my wife, my kids. I spent some time looking up Parkinson’s, the worst cases, the best cases. I’d recently seen a good friend and neighbour deteriorate rapidly with Parkinsons, and his face haunted me. The confident, caring smart, ex-teacher and social gardener who I’d seen reduced to a stumbling zombie in a matter of a year or two, marking a walk to the corner of the street and back as a good day.
I told my wife, who cried and sobbed. That broke my heart, especially when she refused to believe me and kept telling me I was joking, surely I was joking. I told my kids, who said nothing – which was way, way worse. I told my family, overseas, who didn’t know what to say. I didn’t either. It felt worse than a terminal cancer diagnosis – you’re going to die from this, but it’s going to screw up your life massively, first. Look at the great Mohammed Ali, then imagine yourself there…
So I planned for the worst. I got those insurances, and prayed I’d be able to work for maybe another few years, and get our finances into a better place. But I started looking at all options. Sell the home (which has lots of stairs) and buy somewhere on flat land. Only, how would I pay for a mortgage? Close the business, reduce our need for income. Say goodbye to everything I loved, bit by bit.
I began to stumble more, I developed a tremor in my hands that came and went. Opening bottles became a bit harder. I stopped exercising and took up whiskey and ice cream, I learned to hold my wife’s hand constantly for fear of falling over as my sense of balance deteriorated. I tried to accept the world and my fate, but secretly I was so angry and scared.
I withdrew. And said said no. A lot.
Then, one day, my wife got (rightly) angry with my withdrawal and told me it was as if I had already surrendered to death.
And, as in most things, she was right. I had. I suddenly realised that the past year I had done little, if anything. I’d hidden. I’d sulked. I’d predicted the worst and was living my way towards it. And if my days truly were numbered – then why fritter them away?
I had written a children’s book, years before. It was never going to be good enough to be published, but I decided then and there to do two things. I was going to get the book vanity published, in sufficient numbers that my grandkids (none of whom had yet made an appearance but all of whom I wanted to remember me) could get a copy. And I decided to get back in to carving rocking horses, something I’d taken up years before but sadly neglected. If my grandkids knew nothing more of me than a cute rhyming kids book and a wobbly rocking horse, that was okay, I reasoned.
I also made a permanent decision to record my decision; that even if at some point my body did break down, even if I became locked inside myself, unable to move or communicate clearly – that didn’t mean all was lost, and those I loved would still be there. So I recorded a simple message on my arm to always remind me of that fact, in Spanish as it’s the first language of my gorgeous wife. Cuando todo está roto, el amore sobrevive. When all is broken, love survives.
As it turned out, there was a huge twist coming.
Eighteen months after my initial consultation, I was referred for a second opinion to someone who is a renowned expert. It took a little while, but eventually we discovered that not only do I not have Parkinson’s, but that the very same medication I’d been taking was, in fact, causing all my symptoms. I stopped the meds, and within weeks I was back to the old me.
I would love to say I instantly rebounded and began living, but in truth it took me many months. I kept waiting for it to be wrong, for symptoms to return. I was so quick to believe the bad news, the good news had to knock on my noggin every day for many weeks until I finally let it in long enough to truly believe it. And then I told everyone, whilst feeling like the world’s grandest fraud. I struggled every time I told someone, feeling like I had deliberately deceived them or somehow stolen their sympathy. Confusion was a constant bedfellow.
I was telling this story to a friend, recently, and she asked me how mad I must be, how much was I going to sue that neurologist for, what suffering he had put me through for eighteen months. And it hadn’t occurred to me until she said this, that maybe I should be mad.
But I’m not.
I’m scared of dying like I guess many of us are. I can stomach the thought of passing away; but thinking I had Parkinson’s scared the willies out of me, with the way it might rob me of my life one inch at a time. But being told it was happening to me, after a (too-long) wallowing period, helped me see how valuable my days are.
It helped me to see that life is always just a moment away from ending.
Whilst I was surrendering to a fate that wasn’t even mine, people with disabilities or conditions far worse than mine were living their best lives, climbing mountains, sailing and riding and running marathons whilst I complained of a wobbly walk on the beach. Humble and ashamed are good words for the swirl of emotions I feel each time I remember or revisit this experience.
But I’m thankful that it happened to me. I’m a million miles from perfect, but I’m certainly closer to thankful for my own life and the abilities I have. And I like to think that if I do end up losing my abilities I’ll cope better the second time around.
And if I forget that, I have a permanent reminder right there.
Authors name, not real name.