A letter to myself

Dear Vicky on 23rd March 2006,

You won’t believe it, but tonight you are going to meet your husband and your flirtation with internet dating as a way to entertain yourself and broaden your social circle will get you more than you bargained for. When you meet Will, he’s a little shorter than you expect. You'll note his not-entirely-blemish-free skin, his poo-brown t-shirt, a slight husk to his voice, a bit of a cough. He’s had a cold, he says. He apologises for yawning and you’ll decided not to be offended. When it’s time for that important second drink, you’ll realise you’re enjoying yourself; you’ll realise that this guy is easy to be with and interesting to talk to. You’ll get pulled in by the twinkle in his crinkly smiley eyes and the way that he seems entirely at ease with himself. You’ll agree to meet again and go home feeling cheerful.

In the middle of your second date you’ll decide you could fall in love with this person. I can still remember the happiness and peace of that exact moment. You’ll go on other dates and quickly begin to feel like a couple. It’s exciting, but occasionally a little puzzling. Sometimes it seems like Will holds back a little, and why isn’t he desperate to spend the night? You’ll hold him close, feel his heart beating fast and feel (wrongly) flattered. You’ll tell him he’s too good to be true and he won’t quite meet your gaze.

Three weeks in he’ll have a 4am coughing fit and you’ll ask where it came from. He’ll think about trying to gloss over it, but decide against it. Slowly, he’ll tell you that his lungs are buggered; that he has a genetic condition called cystic fibrosis. He’ll tell you it sounds scary when you don’t know anything about it. How I wish that were true, and that it didn’t get scarier the more you knew. You’ll think of programmes you’ve watched about little children with CF and assume out loud that he must have it mildly. “I’m doing ok”, he’ll say.

As the next days pass, slightly numb through lack of sleep and shock, you’ll realize that if you’re going to get out of this, you need to get out now. You’ll worry that staying would be weak – putting your short-term pleasure over your long-term future – but you can’t imagine walking away from Will. He already feels like part of you, part of your family, part of your past and present and future. You run with it; it’s not a choice as such, more of an instinct. You’ll be worried but you’ll also be the happiest you’ve ever been. You’ll introduce him to your family and friends (hoping for no errant coughing fits) and it will all be so easy.

As you get to know Will, and he shares more with you, you’ll get to know CF too. You’ll decide early on to learn through Will rather than the internet. So you’ll get used to the morning treatment regime, the creon at meal times (how did you not notice him taking them before?), the coughing and the evening tiredness. It’s not that he was lying about the cold on that first date, just that it was a handy excuse for things that are in fact always there. You’ll spend more and more time together and talk of living together. You’ll panic because you need to tell your parents about CF. Don’t worry – they turn out to be unquestioningly supportive and wonderful; they’ve got to know Will a little and they love him already. I remain overwhelmingly grateful to them for this reaction.

Your first year together will be pretty CF-free; it’s there but it’s not too worrying and there are no big infections. You'll climb hills together, fly kites, have some fabulous holidays and get used to Will needing to be in bed by 10pm. During the second year, now sharing a sweet little Victorian terraced house, he won’t seem quite so well. You’ll experience your first IV antibiotic round, then another and another. You’ll climb a hill together on a Greek Island and he will ask you to marry him. In a way, with all the excitement, you’ll not notice the subtle deterioration in his exercise tolerance and energy levels. You are so happy. Then comes the first hospital admission, which never quite delivers the lung function bounce you were expecting. Soon after, the doctors will want to introduce the overnight ventilator. After an initial panic you’ll decide to embrace this addition to your nights – a sensible decision – and you’ll soon be almost fond of it. It’s a hard few months, but it means you'll begin your marriage with your eyes as open as your heart.

So today, four years to the day after we met, I look back on that first date. I now know that Will’s quite tall for someone of his age with CF. Post-transplant, he skin is perfectly blemish free, the husk isn’t really there and neither is the cough, but he does still own (and wear) the poo-brown t-shirt. I wonder about that early instinct not to run for the hills. Knowing what I know now, I wouldn’t judge myself (or anyone else) for running. The fight against CF and the slow descent towards transplant is very very hard. My life has grown into something I could never have imagined; the fairy tales didn’t prepare me for it. But I equally never expected to love someone as completely as I do; to LIKE someone EVERYDAY as much as I do; to be as full-to-bursting proud of my husband as I am. Although I’d rather Will didn’t have CF, he wouldn’t be him without it. He wouldn’t be as open-minded and kind and honest and thoughtful and compassionate and humble and brave and determined and frankly bloody amazing, and so I cannot wish it away. The bottom line, in my mind, is that when you love someone, you just love them and you can only really get on with loving them, whatever direction that takes you. Walking away from love would be almost arrogant – to assume that something so precious would cross your path again. I’m not a saint, the worry gets me down and I am not always brave, but I am in love and I am happy and I cannot hope for more than that.

With love, thanks and respect,

Vicky on 23rd March 2010

p.s. There will be times when it will really help you to know that tonight, as I post this, Will is making pasta. I don't mean boiling water plus pan, I mean flour plus egg plus a load of kneading. Talk about energy levels.