The tests are finished and I’m wrestling my boots on. I’m aware the neurologist is sitting patiently with his two colleagues. At first I think the silence in the room is a reflection on how long it’s taking me to get dressed – why did I choose to wear thick socks? After finally lacing up my last boot, I latch on to the actual mood. No one is making eye contact, heads down and a nervous tension is pouring from their flushed skin.
I sit next my wife, Megan. At four months pregnant with our third child, she felt the unease in the air well before me. My body temperature rises and I feel my skin also flush. Our hands grip and the neurologist speaks. “From your case history and the tests we’ve done … it looks as if you have ALS [amyotrophic lateral sclerosis], a motor neurone disease. It’s a very serious and quite terrible disease, so we wouldn’t tell you this unless we were very certain.”
The strangest mix of thoughts and emotions flood in, but it’s a challenge to disentangle them all to put into words. I feel a physical numbing, yet acute awareness, of my body: heat, heart rate, a dry throat and welling eyes. I feel instant pain at what this will mean to my family, yet immense gratitude for having them. I feel shock at the idea my life is going to end. But in a nonsensical way, this is mine to deal with … so, deal with it. The last time I gave myself that “deal with it” command was when I was sliding off a wet rooftop, and dealing with it meant flying past guttering, avoiding the powerline and landing on two feet for a parachute roll. It would’ve been the perfect landing – except I didn’t have a parachute and I chipped my heel bone.
The neurologist and his staff leave. Megan and my children are the greatest part of my life; I feel blessed to be partnered by her in that moment. There is real strength in her love and knowing she is with me, come what may, provides me with a powerful comfort.
Being given a terminal diagnosis reveals our assumption in life that time is plentiful and we have an abundance of choices ahead of us. All the potential that life holds is suddenly reduced and what’s left is compressed into a short time frame. In my “deal with it” state of mind I decide if this disease is mine to bear, if this is to be the final chapter, then I will choose how that will be written and work with the choices I still have. Leaving the hospital brings my first choice: I choose to drive us home – a small act of defiance, but as devastating as this news is, I will protect my normality.
It takes 90 minutes in peak traffic to get home to our children, who were six and eight at the time. A 90-minute emotional twister for us to plant the seeds of how we will move forward, with our children at the centre, including our unborn child. They had a good community of people. However traumatic the experience, ultimately it will make them stronger.
As strange as it may sound, the journey enabled me to clear my mind and find great internal strength. Everything in our lives rapidly simplified. All those trivial things that can consume a person disappeared, and a determination to fight this and break the pattern of symptoms became our mindset. This disease was underlining everything meaningful in life, which was painful but strangely empowering.
We began telling family and friends – news travelled like a shock wave. People came forward offering such strength; I was blown away with gratitude and I am eternally grateful for the support and love surrounding us. In this new reality, four questions formed in my mind.
Firstly, do my children know I love them? Yes. Secondly, will my family be supported when I’m gone? As a parent, you want good people in your children’s lives, and I’m blessed to say, there is no shortage of these people for my children. Thirdly, how will my children fare in life? It’s easy to fear for the people we love, but I had huge confidence they’d be more than okay and become even stronger.
My fourth and final question was, have I done enough for their future? This was tough. I wasn’t talking about education or a safe home; those things were in place. This was about the kind of world they’d inherit. If I thought about the challenges the world faces, then had I done enough to influence good solutions? No. I could say I’d applied my strengths at work to make a difference – I didn’t devalue that – but I could have done more.
I saw the neurologist for a second time six weeks later. We had lots of questions. I asked if he saw anything in my case that sat outside the pattern of ALS. His answer was “No”, and again he took us through the diagnosis. He advised us to get our house “wheelchair ready” within six months. Average life expectancy from diagnosis was 18 months to three years. Ten weeks after the diagnosis, I met with a second neurologist. We’d been told he would redo some of the tests and that – given his greater experience – he would give us a more accurate prognosis. This is when the outlook began to change.
After the tests he said calmly, “I suppose you’ve been told you have ALS? Well, I’m not so sure. I can’t offer you any guarantees, please don’t get your hopes up, but I can say I’m confident you’re going to live to see your kids grow up – maybe not in to adult life, but you will see them grow up.” Cue, sheer relief, joy and exhaustion!
I asked him what he was seeing that didn’t fit the pattern. He came up with five or so indicators. The first was I had so much strength in my atrophied right hand and, relatively, I was still strong. He continued, “If it is ALS, then it’s very slow progressing. We’ll need to do more tests.” Three weeks later, after more tests, he was 80 per cent certain my condition was not ALS but an autoimmune disease called multifocal motor neuropathy (MMN), aka Parry’s Disease. All I could think was, MMN isn’t going to kill me; I will see my kids grow up.
This was a welcome end to a hard-to-describe, life- changing 13 weeks. An experience I would never want to repeat, but one that provided amazing insight. I know what it’s like to be told you have a terminal illness, and to feel gratitude for the life I’ve had. I’ve had my assumption for a long life evaporate, and found peace. I’ve had to let go of my future aspirations to refocus on the present.
As a son, I’ve experienced cradling my parents’ grief, and feeling relief I had this illness, not one of my own children. As a husband, I’ve experienced anguish for my wife facing an uncertain future, and seen incredible strength and courage emerge. As a father, I’ve experienced what it’s like to contemplate the impact of this on my young children, and know they’d be okay.
I’ve straddled two worlds in tension; a world where I had to prepare to die, and a world where I grew a determination to break the pattern and live. Along the way I’ve learnt that death doesn’t need to be feared – along with the sadness, gratitude for life can shine through. Dying does not need to be tragic – some people will find a new strength. When everything is stripped away, what matters most are the people we love and the world they inherit. There’s a lot that’s meaningless in life, which we choose to entertain, but we don’t have to.
Being misdiagnosed with a terminal illness was a burden and a gift. It brought home a deeper sense of purpose. As a parent, my mission is to positively impact the world my children will inherit. The world is beautiful but has serious, urgent issues. I want to look my kids in the eyes one day and say, “I and many others took action, and now the world is fairer, cleaner and more sustainable than it has been for a while. Enjoy it, protect it and go make it even better for your kids.”