Something very important happened 25 years ago this week which taught me some critical lessons in life and in particular coping with my chronic illness cystic fibrosis (CF)*…
On 24 September 1989 (a Sunday), I started three years at university – Roehampton College in South West London.
On that very day all those years ago as my dear parents delivered an apprehensive (but strikingly handsome) youth to his new life, the 28th Ryder Cup played out to a draw at the Belfry in Warwickshire, England which allowed the European team to retain the most famous golf competition since they had won it outright two years before.
At that time 25 years ago, ‘Ride on Time’ by Black Box was number one in the UK music charts and ‘Girl I’m gonna miss you’ by Milli Vanilli topped the US chart. Indeed, it was the year Keisza, the popular Canadian music star, with the current dance hit ‘Hideaway’ was born!
The first Michael Keaton ‘Batman’ film (with the Prince soundtrack) and ‘Bill & Ted’s Excellent Adventure’ were popular in cinemas. George H. W. Bush and Margaret Thatcher were the respective US and UK leaders. 1989 was the year that the World Wide Web was first conceived of in Switzerland by Tim Berners-Lee.
I began this new stage of my life on the back of the August 1989 triumphant announcement by scientists from the US and Canada that they had discovered the gene associated with CF. They predicted that a drug to treat the disease was in reach. Sadly, I am still waiting on that one.
If I could speak to that callow 18 year old back in September 1989, standing bewildered with a heightened sense of trepidation in his college room, what would I tell him?
Experience is everything
As well as the knowledge acquired attending actual lectures (none of which really helped my future career as a communications specialist); I learnt the most about managing my health through experience during this time.
Further education – the need to enhance my education didn’t just apply to stepping up to university from school, getting to better know (but never fully understand) the fairer sex (lessons in love you might say); it also related to the need to educate and coach the people I met there about my condition as it was little heard of and understood back then. In my day (I’m now officially old enough to use this expression), I recall that there was a rumour doing the rounds at college that I had MS rather than CF.
There’s a big difference now relating to the general awareness of CF compared to 25 years ago but it still has a long way to go.
Ingenuity – I discovered the flexibility required to cope with changes of plan and out-of-the-blue challenges. In my Halls of Residence, the room didn’t have the right plug fittings so I needed a long extension lead which went out of the room and down the corridor to use my crucial nebulizer. Back in those days, it was a big and noisy compressor that wouldn’t have looked out of place in the engine room of the Titanic and it involved the most unsubtle tubing out of the window. With the extension cable out of the door, the industrial noise of the compressor and the tubing out of the window, there was no hope of making my treatment secretive!
After a week, I was able to move to a room (Roberts House 116) further down the corridor which had the correct plug fitting which meant I only had to contend with the drill hammer noise of the nebuliser and the tubing out of the window.
I had to utilise wooden blocks on the legs of the bed to elevate it for my physiotherapy sessions to achieve the appropriate postural drainage position. They were prone to slipping mid-treatment which was a scary proposition for all concerned!
I had to be astute with public transport to take me to GP appointments, physiotherapy sessions at Queen Mary’s hospital in Roehampton and travel to both Royal Brompton and Frimley Park hospitals.
I also had to take a deep breath (easier said than done with CF!) when the on-site campus doctor kept referring to my illness as ‘mucoviscidosis’ rather than cystic fibrosis. His terminology, much like his medical ability, had long since passed!
Unexpectedness – I discovered that the milk of human kindness can be found in some unusual places – some of the lads (and on-going best friends) I met at university helped me with my physiotherapy most evenings while watching Neighbours on my tiny red TV! The power of friendship leaves me speechless.
Unhappy Eater (AKA Let them eat cake) – It was vitally important to eat as much as possible to keep my weight up to stave off lung infection. Unfortunately, the food in Halls was most unappetising. I supplemented this with takeaways of pizza and Chinese takeaways and cycle rides on Tuesday mornings (no lectures) to the local shops in Southfields to buy cake and other goodies. It wasn’t a surprise that I had more volunteers to help with my physiotherapy on Tuesdays so they could raid my stash of sweets!
Stay the course – to maintain my health in order to allow me do my studies and have fun, I couldn’t afford to cut any corners with my medical care. It was at college that I really understood the importance of my now embedded mantra ‘I’m only as healthy as my last treatment’.
Life’s for living – university life was a never-ending social carnival – I chose not to hold back as those who witnessed me in action (and often lost in action) will testify.
Regress to progress – I suffered many health setbacks. Taking responsibility for my healthcare was often a case of one step forward and three back. But I learnt what worked for me (as everyone copes differently), what treatments never to miss, how poor health made me feel and that the ability to keep defying CF is addictive.
Owning my health – my time at college was the first crucial step to being accountable for the ownership of my illness and not relying so heavily on my parents for guidance and treatment reminders. I learnt more in those three years at university, and especially fending for myself in that first term, than I did in the previous 18 years at home cossetted in the warmth of family care by my beloved parents and brothers.
Along the way, this period contained many health pit-falls, heartache for my parents (seeing me struggle) and lessons learned a-plenty that would serve me well in the long-term as I forged a career, played sport, got married and became a dad. It was the end of the beginning…
I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
Tim Wotton (CF author)
Your help please:
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* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.