I couldn’t believe what I was hearing. “You’ve got a rare congenital kidney disease, but there’s only a 10 per cent risk of morbidity.”
“What? I can’t die yet!” I have three daughters and the youngest is only nine-years-old.” That was my first thought when my urologist gave me the diagnosis for what was ‘wrong’ with my kidneys. The second thought that poured out of my mouth was: “Is this going to affect my running?” The third – I’m only 44. “I need at least 10 years,” I replied – the youngest will be old enough to fend for herself then.
“Your kidneys have managed for 40 years, there’s nothing to worry about,” he said (he obviously doesn’t know that women with multiple children have three things in common: guilt, worry and the ability to cry at anything, even an advert about chocolate).
“People with this condition – Cacchi Ricci disease (isn’t she an American actress?) – often have problems with absorption of calcium or potassium citrate. We’ll need to do further tests,” the doctor said. I really didn’t care.
All I could think about was how unfair it would be for my kids for me to die when they’ve already been through divorce and all the rubbish this heaped on them. I didn’t give a flying toss about whether I wasn’t absorbing one mineral or another, or the consequences (potassium citrate inhibits the production of kidney stones, so if I’m not producing this I’m in trouble as I’ve got hundreds of tiny crystals all waiting and ready to go/grow).
I suddenly understand though – the reason for the increasingly painful urinary tract infections I’ve had all my adult life, and the kidney pain. And the kidney infections. When the pieces of your biological puzzle are suddenly slotted into place by a deep body scan you are given a gift. Knowledge. This brings relief. So now I know why this happens. Still, I don’t care about it.
But wait, I thought, driving home, I forgot to ask you doc, does this explain why my bladder also doesn’t want to work sometimes? Yep, it’s not just that I can’t sleep through the night without getting up to pee, I can’t sleep for two hours. Oh and what about the leaks – oh yes, I’m getting them more when I run (that’s right, in public where everyone can see me). Especially if I am putting in some effort. Is this going to get better/worse/disappear? And doc, did I tell you I’m only 44? I’m just not ready for this. I need 30 years more to get prepared.
So now I had the name (though no one else has heard of it and I’m already bored of repeating it), I obviously had the condition, but I knew it wasn’t going to be part of my life. I didn’t own it and tell everyone about it because even though it’s there I don’t care that it is. If I was born with it what can I do? So why make it important to me?
I felt lucky – this was my chance to prove that despite *this* (you get to insert whatever you’ve got into this sentence here) any of us can still knock out a PB if we believe we can and adapt our training. It’s also called bloody mindedness (something to do with having Taurus somewhere in my chart). You tell me I can’t do something. I then try to do it.
First I changed my training to one week of effort, one week of slow running. Next I had to try for a PB. I needed to prove to the disease it’s not going to slow me down. And I mean lifetime PB not age group. The hardest distance for me, as a long distance runner, is 5K. This was my target.
When the next set of tests came back they showed (of course) that my body doesn’t produce enough potassium citrate, so I’ll be taking it every day from now on.
Some weeks I can’t run. It’s like being burnt out, where the flame I need to fire my fuel is so weak that energy is not a by-product. And my kidneys scream with pain. So what. They are extra rest weeks. I’m having to skip lots of training. I can’t compete with those who are knocking out the miles, reps, races. But why would I want to? They aren’t me.
But every single run I make feels like biting into buttercream. And each one gives me the chance to meditate for a while on having strong, clear kidneys that restore health to my body. The mud that flicks up into my mouth and eyes is the earthy reminder of the beauty of that very moment, right there. The friends who I run with become soldiers beside me who share the fight against apathy and acceptance of what is or what could be. Together in our sweaty march we show ourselves and the world we still can. Despite. Something.
A spring marathon number is waiting for me. With less training and less effort my kidneys and I plan to be at the start, lining up with thousands of others running despite of ‘something’. My two speckled organs won’t care what time we finish in. Neither will my three girls.
I’m not going to die. Well, I am but you know what I mean. I’m starting to feel I don’t really know this body that’s mine (I’d just like to point out to my biological self that travelling through the crooked and weird journey of early menopause was challenge enough for this year). The last appointment I had with my doctor I asked two very important questions: can I still train hard, and is drinking alcohol forbidden? I did get my PB and no I didn’t wet myself when I did it (though there have been a couple of other times this year when this isn’t strictly true). And the answer was a yes. And a no.
What are you battling against? Tweet @shewhodaresruns how you run despite something