A lesson in vulnerability

Or, that time I mentioned my wheezy-hamster-lungs in an interview.

Unsurprisingly having a life-shortening illness can make you feel a tad vulnerable at times. It can also make you feel like a superhero when you defy the odds.

But there’s one context that has always made me feel more vulnerable about having Cystic Fibrosis than any other.

A job interview.

The normal tension, adrenaline and uncertainty of an interview is shadowed by one little voice in the back of my head asking ‘but when do I tell them?’

An admission that you’re essentially a walking pharmacy, reliant on multiple medications to survive, need a dedicated diary to keep up with doctor appointments and will likely have to be hospitalised for a week or two a year, is not traditionally  viewed as a strength in the professional world.

And yet, revealing my CF made me feel stronger and more assertive than perhaps any other single statement I made during a recent interview.

And I got the job.

In fact, I have now discussed CF in three job interviews this year. Two for freelance positions and one permanent. I was offered all three roles.

I don’t share this as an example for other people with chronic illness to emulate. I am in no position to recommend anything, and I am well aware of the serious emotional and financial risks of disclosing an illness in a professional context.

All I can share is my own experience. Five years ago I would never have been so open about my CF. I even let CF be the reason I didn’t apply for several opportunities; much as I regret it now, I accept it’s what I was comfortable with back then.

I’ve always been frank with people who know me and prefer to joke about life with CF than to not talk about it at all.  It is an attitude that I have tried to translate to my professional life too.

So over the course of this year I have – unconsciously at first – dared myself to be more open than I ever have about this strange life I live as a medical grade drugs mule. CF has a curious ability to scare you and make you brave simultaneously, and I relish the lessons it’s taught me.

A few months ago I turned up on the first day of a freelance job with a 10 inch plastic cannula tube sticking out my arm, as I finished the last couple of days of an intravenous antibiotics course.

I was recovered and able to do the work, but in previous years I would have fretted and worried about this unchangeable fact of life. No doubt making myself feel worse in the process and less focused on the job at hand.

Instead by being honest, matter-of-fact and hopefully professional about it, it became a non-event. For me at least, I never did check whether my line manager was squeamish.

That wellworn adage, misattributed to Marilyn Monroe on many an insta meme, ‘if you can’t handle me at my worst, you don’t deserve me at my best’ starts to ring true. But only partially, as I don’t think people with a chronic condition should believe it represents the worst of them, far from it!

Whether the issue at hand is an illness or any other type of imperfect truth; it is a truth. And as I have learnt, it’s one that can be an asset, a vulnerability and a triviality all at the same time.

So take me as I am: war-chest of antibiotics included.

 

 

 

 

 

 

Sorry but I don’t like your air

I got offered a freelance role recently. Successful agency, a big new business win to work on and, it goes without saying, some financial security.

I turned it down.

I could almost hear the recruiter thinking when I told her my decision, “is she crazy or just plain stupid?” Of course, she was nothing but pure professionalism in her response and I thank her for that.

But it wasn’t a straightforward decision. I’d already decided that I should probably take some time out between jobs to give the old breathers a chance to recover and repair. Besides, I had about a month long backlog of hospital appointments to catch up on (sadly the over-burdened NHS hasn’t quite got around to developing holographic technology to enable virtual appointments yet, but here’s hoping.)

In addition, I had made the hard decision to leave my previous agency to pursue a different kind of planning and transition into the sustainability and charity sector, so to not give that a shot first seemed wrong.

But the most pressing reason – that even common sense and a decent pay cheque couldn’t argue with – was where the agency was. Specifically the air around it. It was in an area of of London known for very poor air quality.

I’ve got my own little mind map of London that doesn’t mark the tourist spots or the best lattes in town (I’d pay good money for that map though) but it does tell me where all the areas of persistently bad air quality are, and I do my best to avoid them for long periods of time.

It sounds a little dramatic I know, the effects of breathing poor air are negligible if your exposure is minimal- for everyone that is, CF or not- but the long term effects are quite another thing.

There are lots of things you can’t put a price on and – it’s taken me a long while to accept it – keeping my lung function as good as it possibly could be, definitely falls somewhere in the ballpark of priceless.

Now if someone could only develop a high fashion face mask that doesn’t make you look like a ninja with a side hustle, that’d be peachy.

 

With every percentage

That scrappy bit of paper above is a list of life ambitions I wrote, aged 18. You can see I didn’t exactly hold back.

That scrappy bit of paper is a list of life ambitions  I wrote, aged 18.  I didn’t exactly hold back. In full it reads:

write at least one novel
have a photographic exhibition
speak 5 languages
save someone’s life
work for UN/NATO
sing in a band
visit over 50 countries
publish a historical/political work

learn a form of martial art.

To complete this grandiose document I then apparently scribbled some train times upside down at the bottom. In a similar vein, I didn’t find this note carefully stored for future reflection but by chance, stuffed in an old folder, when I recently moved house.

A few ambitions have changed in the 10 years since then; I never did apply for that NATO job nor have I seriously picked up a camera since I was 19. Ambitions change as we grow older, sometimes for better sometimes not (although me not singing in a band is almost certainly doing the world a favour). But what really hits me looking back on that list now, is the fact I had no limitations. My 18 year old self saw no reason for me to dream smaller or be cautious.

And why should I have been? At 18 I hadn’t had a single IV admission, I didn’t take any regular nebulisers, I hadn’t developed CF related diabetes, I only took about 10 pills a day. I’d just been prescribed my first inhaler. I was not by any stretch, what you would expect from a young adult with CF. I am proud to have dreamed so big.

The thing is, those big dreams may have evolved but they haven’t gone anywhere. I am loath to accept limitations, and the list I’d write aged 28 is just as ambitious as the old one, Cystic Fibrosis or not. But a little life experience has taught me that achieving every dream takes time and compromise.

A thought popped into my head the other day, and I found myself speculating how much lung function I had permanently lost in the last 3 years due to normal stresses like long hours at work and city air. I settled on 6 percent. Lung function fluctuates naturally, mine has gone up and down by 20% in the last year depending on how well and generally fit I am. But there is something called a baseline measurement in lung function, and CF doctors will use it to assess what your best figure is.

After my morbid moment, I mentally slapped myself and went back to mindlessly scrolling through my Facebook feed. But navel-gazing Elly had a point, there’s an opportunity cost in everything we do.  We all need a method of measuring how we spend our time – even if spent percentages of lung function is a little niche – how else will we work towards our goals?

I thought about all the hours that made up those three years, some spent in pursuit of goals big and small, others spent happily pursuing no goal at all. I wouldn’t go back and change them; they’ve led to personal and professional achievements I’m proud of. But I do wish I’d spent more of that 6% in pursuit of the things I really measure myself by. The motivations, beliefs and dreams that inspired that little list in an A5 notebook aged 18.

Which is why, 2 weeks ago, I quit my job. I’m spending the next few weeks working on a writing project I’ve been awarded a grant for.  Beyond that I’m looking for a role in a creative agency where I can work on the kind of social change, charity and sustainability projects that get me really excited.

I’d like to make every percentage count.

“Do anything nice on your day off then?”

…Why yes actually, I spent a very engaging 6 hours in hospital taking part in a first-of-its-kind phase III clinical gene therapy trial.

Could have done with an actual day off though, come to think of it.

So I’m currently taking part in the UK’s only ongoing major gene therapy trial for cystic fibrosis patients. To be considered you have to be well enough to be living a fairly ‘normal’ life with a lung function that is mild to moderately affected, but ill enough for them to clearly observe any potential improvements as a result of the trial. I am one of those lucky people.

As far as I’m concerned, it’s my first real attempt to ‘give something back’ to the CF community. I have fund-raised before, but never to a significant level. I’ve filled out a few surveys in hospital and taken part in some very brief product trials but nothing more. I thought it was an appropriate time to do more and of course, with a potential benefit to myself.

Here’s the catch though. Like any major medical trial these days, there has to be a placebo involved in order to verify results for the wider world. This means, every 2nd person on the trial, will be taking a placebo treatment for the entire duration, (obviously) without their knowledge.

The trial is a year long, with monthly appointments that take a minimum of 4 hours and a maximum of 8. That is at least 72 extra hours I will spend at hospital this year, in addition to other routine appointments I must attend every other month. Not to mention any unscheduled time for treatment due to illness.

I must do this around a full-time job with hours that often extend over 9-6. I also have several side projects on the go, not to mention my career ambitions, regular exercise (an essential part of staying well) friends and family to see, a life to live and a decent amount of shopping to fit in too.

I could spend all that extra hospital time receiving nothing more than a simple saline solution with no medical benefit to my lungs. Which is why, I think, it’s very important to take part in things like this for reasons other than my own health. By participating, I’m helping scientists and doctors help the next generation of CF sufferers live healthier, longer lives, and perhaps even bring that all-elusive cure a step closer for us all.

That, I think, is a venture worth taking part in.

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One of the more successful recent shopping sojourns. Cheers Zara!