My experience of ‘going mad’ was the result of me
mentally fending off the prospect of the physical demise of my own children,
who, I have been told, will need kidney transplants before age 20. My imagined
view of their young lives vanished overnight and into my consciousness came
things like renal diets, dialysis, the hope that a kidney donor would be found,
anxiety that their Dad can only donate to one of the boys (assuming he’s a
match for either, which we don’t yet know). I had fears about operations, the
damage that renal failure can do to a body, worries that their young lives – by
then surely on the cusp of adulthood – wouldn’t be what I imagined. I worried
about all sorts of things; immediate issues like their deafness, to more distant
but important things, like their education, social lives, being in kidney
failure whilst at high school and of course, dialysis and transplantation. I
worried about the fact they each probably need more than one transplant during their lives and I worried about the fact they won’t be a priority for donor organs once
they reach adulthood. I worried their illness will impact on their plans to
travel, their work prospects and their relationships. I worried about their
sense of self, how they'll make sense of who they are as people with a rare
illness. Overall, I worried because they are too young to fully understand
what’s happening and thankfully they aren’t worried for themselves because they don’t feel
ill. In short, it was all too much. My hopes for my children were scooped up, shaken about and scattered into
the wind. They haven’t vanished, but they’ve been dispersed. Despite all this, I
haven’t felt sad and I haven’t cried once. Is it possible to be in shock for
several months?
People kept telling me not to worry, not to be anxious
about a future that hasn’t even happened yet. “The future will take care of
itself, just focus on the here and now,” people said. Great advice, I’m sure. But
firstly, what I’ve been worrying about isn’t some abstract possibility; my boys’
kidneys will fail, it’s not a case of
if, it’s when. The manner of it and how it'll happen is unknown but the reality is, it will. Secondly, telling someone like me not to worry is like telling a
seal they can’t swim and instead they should flop about on dry land all the
time; worrying is what seasoned worriers do. When we
aren’t worrying about something, we feel odd, alien. I’ve been a worrier all my life. If there were medals for worry and plaudits for anxiety, I’d
have won them all. I worry about worrying. And I do it all silently, inwardly.
Partly it’s because people say unhelpful things like “don’t worry”
(uncharitably, I suspect this is more for their own benefit than mine, because they want to be able to make everything all right) but also
because privately, I feel ashamed about worrying. I don’t like it and I don’t
want to inflict my boring concerns on others. I also feel I don’t deserve to be
anxious, because others have it so much worse. (And it’s true, they do, but
that’s not to say my life has been a picnic lately either). Incidentally, I dislike
the term ‘worry’ when others use it about my circumstances, because I think it
trivialises horrible, gnawing, ever-present fears. But yes, I'm a big time worrier and given something this big, it just sent me over the edge of a cliff.
I feel very sorry for the people who had to witness it. They saw my fragmentation, paranoia, fear and confusion first hand. My words and actions were so idiosyncratic (and at odds with the person they know) that they made no sense. For me, I found that the everyday parts of my life became the backdrop to a drama played out in a private, nightmarish landscape. It was a horrible time and so I'm thankful that I'm now well enough to write about it. I daresay this might seem like a terribly boring, self indulgent post but to me it's important. So thank you for reading what I've written.
