Experienced on – September 2024 – Ongoing
Published on – 11th March 2025
My partner was on holiday when we suspected she might be pregnant. This meant we had five days apart before she was back home to take a test.
The second day alone was filled with panic. Alcohol has fortunately been one of the things that doesn’t exacerbate my symptoms; it just affects my sleep. But I wasn’t sleeping that night anyway, two bottles of wine or not.
My panic came from a sense of trepidation that I couldn’t be the dad I wanted to be. My body wouldn’t let me.
ME/CFS is an illness that punishes you for thinking of the future. Now, I had to possibly think even further ahead—about my kid’s future.
On the third day, I remained in bed. The slow rain creaked against the window like a rickety cot, the noise being a reminder of what was possibly to come.
I had never really been around young children before, especially recently. The only child I interacted with was the daughter of my cleaner, who would often come round while her mum worked.
Over the two years following my latest crash, seeing her grow up before my eyes really hit home how long I’d been isolated. It was the only way to mark my illness timeline.
I worried this would be true for my own kid—each new pencil mark on the door denoting a special occasion or event I’d missed in their life.
Someone once told me that with this illness, first your body lets you down, then the doctors let you down, and eventually, you become the letdown.
Did I really want to add another person to that list of disappointments?
On the fourth day, I joined multiple forums for parents with ME/CFS to understand how it could be possible to raise a kid with this illness. I spent the day reading every comment, single dads and single mums reassuring me that everything would be fine. Their bravery was inspiring, but I thought about the ones in relationships. What would their partners say?
The fifth day came, and her arrival home was imminent. I had a box of flowers and a bottle of gin waiting—for either result.
We thought we had two minutes to prepare ourselves, but after 10 seconds, the results were clear.
I looked at her. The panic of the last five days slipped away. I felt calm.
I knew that, despite the tumultuous last seven years and everything the illness had taken from me, it had also prepared me for what was to come.
The date is now the 10th of March 2025, and I’m doing everything I can possibly do to prepare for the imminent arrival. I would classify myself as moderate now. I can occasionally go outside for very brief spells. I don’t know if it’s a moment of stability or one small step on the road to some type of recovery.
Sat on a bench I took a deep inhale of the fresh air, and thought about one of the lessons I wanted to teach my kid:
“Enjoy every raindrop.”
One of my favourite singer-songwriters is Warren Zevon. He was a complicated and troubled man, and following his diagnosis with mesothelioma, he publicly faced his mortality on a final album and press run.
It was on this run that he coined the phrase “enjoy every sandwich.” It was a stoic message to appreciate the mundane moments in your life, to stop and be present, even if it’s uneventful and you’ve done it a thousand times before.
But I want to go a step further—to teach my child to appreciate even those moments of inconvenience, misfortune, and discomfort. And to have the perspective that there would be those who long for it.
I should probably teach them how to walk and talk at some point, but after the raindrop lesson.
I’ve got plenty of time anyway. The first year or so is all naps and crying, so not too dissimilar to my last seven years.
I have no idea what’s to come, whether my illness will give me some respite, or whether it will beat me down even more.
But for now, I’m just happy to be thinking of the future again, of a life that I need to be part of.
(For my future Little Pal)
PREVIOUS CHAPTER
LIFE IN A CRASH 