‘A burden and a gift, painful but empowering’
The tests are finished and I’m wrestling my boots on over thick socks. I’m aware the Neurologist is sitting patiently with his two colleagues. At first I’m thinking the silence that’s filling the room is reflecting how long it’s taking me to get dressed – why on that day did I choose to wear thick socks! After finally lacing up my last boot, I latch on to the actual mood in the room. No one is making eye contact, heads are pointed downwards and, as if they’re holding their breath, a nervous tension is pouring from their flushed skin.
I sat down next to my wife Megan. At four months pregnant with our third child, she had felt the unease in the air well before me. My body temperature rose and I felt 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, a Motor Neurone Disease. It’s a very serious and quite terrible disease, and so we wouldn’t take this step of telling you this unless we were very certain…”
In this moment the strangest mix of thoughts and emotions flooded in to play. It’s a challenge to dissect them all to put into words… I felt a physical numbing yet an acute awareness of my body; heat, heart rate, a dry throat and welling eyes. I felt instant pain at the thought of what this would mean to my family, and yet immense gratitude for having them in my life. I felt shock at this proposition that my life was going to end, and yet in a nonsensical way, it made sense that this was mine to deal with … and so ‘deal with it.’
The last time I gave myself that ‘deal with it’ command was when I was sliding down a wet rooftop. It was one of those occasions that was too far gone to be turned around and so dealing with it meant flying past the guttering, avoiding the power-line and landing on two-feet for a ‘parachute roll’. It would have been the perfect landing except for two reasons; one, I didn’t have a parachute and two, I chipped my heal bone.
The Neurologist and his staff left the room and we had privacy. Megan and my children are the greatest part of my life and I felt blessed to be partnered by her in that moment. There was real strength in that love and knowing that she was going to be with me come-what-may, provided a powerful comfort to face forwards with.
Being given a terminal diagnosis like this reveals the assumption that time is plentiful and that 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. However, in that ‘deal with it’ state-of-mind, if this disease was mine to bare and if this was to be the final chapter, then I would choose how that final chapter would be written by working with the choices I had remaining. And so leaving the hospital came the first choice; I chose to drive us home, a small act of defiance maybe, but as devastating as this news was, I would protect any normality that was useful to protect.
It took us ninety-minutes in peak traffic to get home and back to our children, who were 6 and 8 at the time. A ninety-minute emotional twister and, most importantly, ninety-minutes to begin setting the seeds of how we’d go forward. At the centre would be our children, including the baby growing inside my wife. Around them was a good community of good people and however traumatic this experience would be for them, it would ultimately make them stronger and wiser. As strange as it may sound, this car journey was the beginning of finding myself with the clearest mind and the greatest internal strength I’ve ever experienced.
Everything in our lives simplified rapidly. All those trivial things that can consume a person’s energy just disappeared. Friendship stepped forward with such strength; I was blown away with gratitude for the support that suddenly surrounded us. A determination to take this on and break the pattern of symptoms became the landscape of our minds. Presence to everything that was great in our lives amplified. Real conversations from the heart were daily exchanges. This disease underlined everything that is meaningful in life – painful, but strangely empowering.
In this new reality, four questions formed;
One: Do my children know I love them?
Two: 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 around my children.
Three: How will my children fair in life?
It’s easy to ‘fear’ for the people we love, but I had a huge confidence that they’d be more than OK and become stronger from the experience.
Four: Have I done enough for their future?
This fourth question was tougher to answer. I wasn’t talking about education or a safe home; those things were in place. I wasn’t talking financial security either, they’d find a way through on that front. This was about the kind of world they inherit. If I think about the challenges the world faces, then had I done enough to influence good solutions? The answer was ‘NO’. I could say I’d applied my strengths through my work to make a difference, and I don’t devalue that, but in all honesty I could have taken this much further.
After receiving the ALS diagnosis, we began telling the people around us. As you can imagine, news travelled like a shock wave through family and friends and I am eternally grateful for the support and love that came back our way. Much happened over the coming days and weeks, but this is where I’ll speed up the story…
I saw the Neurologist for a second time six weeks later. We had lots of questions for him. I asked if there was anything he was seeing in my case that sat outside the pattern of ALS. His answer was ‘No’ and again he took us through the symptoms and diagnosis. His advice was to get our house ‘wheelchair ready’ within six months. As we’d also read, the average life expectancy was 18 months to three years from diagnosis.
Ten weeks after the diagnosis, I met with a second Neurologist. We’d been told he would redo some of the tests and given his greater experience, he’d give us a more accurate prognosis based on those results. This is when the outlook began to change. After the tests he said calmly,
“I suppose you’ve been told you have ALS? [Long pause] … Well I’m not so sure. I can’t offer you any guarantees and please don’t get your hopes up, but I can say that I’m very 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 six indicators. The first being that I had so much strength remaining in my atrophied right hand and that relatively, I was still so strong. He went on,
“If it is ALS, then it’s very slow progressing, but it may also be something else and we’ll need to do more tests to find out.”
My wife, who herself is a powerhouse of knowledge when it comes to health, asked if ‘Parry’s Disease’ was one of those possibilities, which he confirmed it was.
Three weeks later we had more tests with the second Neurologist. On examination of the results, he shared that he was 80% certain that my condition was not the terminal illness ALS, but actually an autoimmune disease called Multi-Focal Motor Neuropathy, (MMN), a.k.a. Parry’s Disease.
The best news is MMN isn’t going to kill me and I will see my kids grow up. This was a welcome end to a hard-to-describe and life-focusing thirteen weeks. An experience I would not want to repeat, but also an experience that has provided a huge amount of insight.
In summary, I’ve experienced an end-of-life sequence, without – as it turned out – actually being in an end-of-life sequence. Specifically,
- I’ve experienced what it’s like to be told you have a terminal illness and feel gratitude for the life I’ve had.
- I’ve experienced the assumption of a long-life suddenly evaporate and find peace with it.
- I’ve experienced letting go of my dreams and aspirations for the future and refocus on the here and now.
- I’ve experienced as a son, feeling the weight of my parents grief and feel thankful that I had this illness and not one of my own children.
- I’ve experienced as a husband, anguish for my wife facing an uncertain future and yet see her strength and courage step forward.
- I’ve experienced as a father what it feels like to contemplate the impact on my young children, and know they’d be OK.
- I’ve experienced what it’s like to straddle two worlds in tension; becoming prepared to die and growing a determination to break the pattern and live.
So what are my insights?
- Death doesn’t need to be feared, next to the sadness it brings sits a gratitude for life.
- Dying does not have to be tragic, for some people it will create a new level of inner strength.
- When everything is stripped away, what mattered most to me are my children and the world they inherit.
- There’s a lot of meaningless bullshit in life that we’re choosing to entertain, but we don’t have to.
- Friendship and community is powerful. Investing ourselves in the people around us is good, because in a time of need it can provide exactly what we need.
- Finally, as if I didn’t already know it, I’m even more certain that I married the most amazing woman.
So where to from here?
To put it bluntly, when I do finally reach the end of my days, I’ll be pretty annoyed if I can’t look back on this experience and say, ‘I did something meaningful with it’. I should point out that other people go through worse experiences, but this was an immense challenge for me and those around me.
So doing something meaningful from this experience, how does that look?
- Share the love: I was fortunate in many ways. I’m a Leadership Coach and I have plenty of tools and strategies for facing challenge and adversity. I can now say without doubt that I’ve well and truly pressure tested these tools and strategies, and so I’m putting them out there freely for others dealing with a serious or terminal illness to use. Find them here.
- Exit bullshit: It’s hard to entertain bullshit after it’s suddenly revealed as meaningless. I can count on one hand the things that matter most in life, and perhaps it’s only a life-threatening situation that can move that idea from a concept into a heart-felt knowing. The challenge now is to not let the bullshit back in and instead question everything; does this have purpose? Is this meaningful? What is this feeding, my soul or my ego?
- Be a solution: The big one. This was the fourth question and the one I could not put a YES to. Have I done enough for my children’s future? In terms of a life well lived, I found personally that my measure for this was not derived on an accumulation-of-stuff-basis, but on a difference-made-basis. Our kids ‘take over’ one day and ultimately their inheritance is the world we live in, and so as a loose plan, let’s expand on the good parts and solve the bad part. As I described earlier, I can reflect and say I’m underway, but there is more I can do and I’m accountable for that. Whilst I’m talking personally, anyone can reflect on this for themselves;
- What are the solutions the world needs?
- Which solution do I want to be part of?
- How can I best apply my strengths to be part of that solution?
This is life mission stuff and these are questions people must answer for themselves if they wish to. There are many people already out there in action and the ones who I know are an inspiration.
To close, paradoxically, being misdiagnosed with a terminal illness was a burden and a gift, painful but empowering. It’s underlined what’s most important in life and brought home a deeper sense of purpose. With my children at the centre, my mission as a parent has to extend to positively impacting the world they inherit. This world is beautiful, but it also has some serious and urgent issues that create risk for future generations and so I want to look my kids in the eyes one day and say,
“I took action along with bunch of other people and now the world is now fairer, cleaner and more sustainable than it has been for a while. Enjoy it, protect it and make it even better for your kids.”
If you are reading this and have been diagnosed with MND/ALS, then I understand something of what you’re going through. I’ve learned that people’s experiences can be very different, but I do hope that you have people around you providing love and support. For me, this was a source of real strength. If you need some strategies to help, you can tap into the ones that worked for me here.
I wish you well,