Life has imitated art in the latest instalment of my survival against all odds with the chronic illness cystic fibrosis (CF)*…
I’d expect everyone to be familiar with the ‘Snakes and Ladders’ board game. Landing on a specific part of the board can allow you to take a ladder, which positively moves you up the board or conversely you can land on a snake which negatively drops you down, sometimes all the way back to the start.
Transmuting this ‘game’ to real-life brings an interesting reality. In my life battling the daily hardships of CF and diabetes, there seems to be only a few ladders and always the potential for snakes to drop me down. The snakes are long and can be deadly and the ladders are shorter and are often offset by the trapdoor of a near-by snake.
A new hope. I started the new drug Symkevi in late November 2019 after a heart-breaking four-year wait caused by Government and Pharma wrangling’s over cost. After three weeks on this ‘wonder’ drug I could feel a few small improvements in my lung function – this was a small ladder.
Disaster struck days before Christmas when I came down with a nasty virus which brought on high temperatures, cold symptoms, zero energy and days of listlessness. The tsunami effect on my lungs has been horrendous with barbaric coughing fits which my wife Katie claims were the worst she’s heard in our 20 years together.
A huge snake dropped me from mid-table where I had a small level of hope back to the depths of despair and concern for my very future. It’s been one of the worst trap doors of my life.
This has necessitated the need for an intensive intravenous (IV) treatment course involving four IV meds each day, each lasting well over an hour. These treatments sit alongside all my usual treatments, which make for a long day starting at 7am and finishing at 11.30pm.
Finding meaning in my suffering. It just so happens that last year I have read a few holocaust books, starting with the young heroine Anne Frank and most recently Viktor E. Frankl’s Auschwitz testimony ‘Man’s search for meaning’.
This particular passage resonated with me…
The way in which man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult of circumstances – to add a deeper meaning to his life.
According to Frankl, who went through hell on an hourly basis for over three years in different concentration camps; one can discover the meaning in life in the attitude taken toward unavoidable suffering. In accepting the challenge to suffer bravely, he felt life had constant meaning.
How this applies to me. No one can relieve me of my suffering or suffer in my place. The way I bear my suffering is a genuine inner achievement and thus does provide my life with meaning and purpose.
As I navigate this uncertain path, I have taken consolation from a Persian adage reflecting the temporary nature of the human condition – whether it be when life is going well or badly – ‘this too shall pass’.
Life ultimately means taking the responsibility to find the right answers to its problems and this IV treatment is the first step in regaining more strength and lung function in order to keep climbing up the board in search of more ladders.
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.
Hear more of my thoughts on how to find meaning & gratitude in adversity via my own podcast ‘The Gift of resilience, calm & joy’. It’s available on most podcast platforms including Apple, Google & Spotify. Do subscribe, listen and tell others. Thanks.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.