Cyclejen's Blog

April 4, 2010, 8:45 pm
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Let’s face it –  there is one reason I am doing this bike ride. It’s not for myself; I’ve been lucky enough to be fit and healthy for nearly all my life. Cystic Fibrosis has been an inconvenience at most. I am doing this for Lizzie and all the other people out there where CF is a reality and not a concept or a hazy dot on the horizon. Let me tell you about my sister. I’m not sure when I first met Lizzie, but I imagine it was some point during the first couple of weeks after conception. There I was, floating about in amniotic fluid, desperately trying to concentrate on growing arms and feet (I was a real go-getter), when there was a flash. Suddenly, I was a lot smaller and Lizzie was floating around next to me. I kicked her out 7 months later and we’ve been inseparable ever since.

We shared the same CF path for many years and both had our first chest infection together when we were nine. Back then it was quite fun, as we spent time in hospital not feeling ill and pretending we were on the set of Children’s Ward. We got new pyjamas, we made little Fimo figurines and I had a comedy cup that leaked water when you drank it. I don’t know what Lizzie had but I bet it wasn’t as side splittingly hilarious. Good times.

But then Lizzie had to go ahead and get properly ill. First, she was left with 1 foot of necrotised intestine for a souvenir when her bowels telescoped in on itself. I should mention she doesn’t actually keep it in a jar of formaldehyde – she’s not that cool. If she had any wits about her she would have woken up on the operating table and demanded it as a trophy. Good thing though, as it could have come back to life as a shit eating zombie. Next, comes a period in hospital when she had the nerve to lose all her white blood cells after a reaction to a medication. That sure was fun. Top it off with frequent periods of time spent in hospital with chest infections, plummeting lung function and weight, all while studying for and achieving a PhD, and you’ve got some kind of bowel-munching, white cell trashing superwoman. That gets sick a lot. Meanwhile, Jen feels just fine, thank you.

Yeah, call it self-absorbed and selfish, but it can be difficult being The Healthy One. There Lizzie is, lying, coughing, gasping and there’s nothing she can do about it. And there’s nothing you can do about it. You also have the added benefit of guilt – what did I do that was so different, how could things have turned out so woefully one-sided? If I could have taken just one of those bullets, then surely I would. Of course, there is also the fear that you are getting a preview of your own inevitable decline. As a result, every time you get a chest infection or a sore stomach you ask “Is this is how it starts?”

In the end, who’s more powerless?

So Lizzie, this one’s for you – and every other person out there with CF who has it worse, and every other person who has it better.


2 Comments so far
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Lovely post jelly bean.

But you see, I would happily keep taking the bullets if it meant you didn’t have to take any. I wish it worked that way, but we aren’t completely powerless; there’s all the yummy smartie drugs :-p

Additionally, you didn’t kick me out the womb; I planned and executed a well thought out escape for us and led the way. You’ve never properly thanked me for that! Chuh!

Love you 🙂 xxxx

Comment by lizzie

I also think you fo yourself a disservice by saying cf isn’t a realty for you. You take about 40-50 pills a day and a nebiliser twice a day. Most normies couldn’t conceive this. Of course you’ve adapted to this regimen, but its still a reality for. This bike ride is still a greater challenge for you than someone without lung issues. And you do have them too.



Comment by lizzie

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