The Irish playwright and poet Oscar Wilde once wrote: ‘We are all in the gutter, but some of us are looking at the stars.’ Living with CF can be painful and soul-destroying. How do we possibly maintain hope—keep our eyes on the stars—in the midst of this?
Our family has recently been on a journey which has been a challenge (for me) to focus on hope. My 12-year-old son, Oliver, has been pursuing his ‘wish’ with Make-a-Wish: to hike the Inca Trail to Machu Pichu inPeru. As our departure neared I began to think the idea might be ridiculously optimistic. I have always believed that a positive attitude would pull us through difficulties and teach our kids they can do anything. However, in recent months I began to have doubts. When I emailed an Inca Trail operator to ask if they’d guide us, they responded: ‘You want us to trek at high altitude with two kids with a serious lung condition and a third one (age eight) who’s barely old enough to tie his shoes??’ Uh, yes, please.
Hope and optimism are essential for a good life, particularly when living with illness. The importance of hope has been well-researched and found to play a fundamental role amongst people living with illness and their families. Not surprisingly, research has found that hope in these situations is fragile and can be negatively impacted by declining health, economic insecurity, gaps in healthcare and lack of emotional and social support. Even when everything is going pretty well we can still wake up, plastered to the pillow with hope slipping through our fingers like cool sand. How can we protect this liquid gold that could be as valuable to our health and healing as antibiotics?
There are some small things that may help (they help me), including:
- Spending time with people who are living positively with CF or other challenges
- Hearing about medical breakthroughs
- Surrounding ourselves with those who love us and make us laugh.
- Finding ways to make the daily grind less of a grind (change or drop a treatment)
- Getting plenty of good CF information and tips from others
- An occasional splash of denial—or at least not focusing on the worst-case scenarios
- Sharing a hot bath with some good chocolate
So, several months ago we finally found a Peruvian company to take us on the trek. In early July we flew to Peru. Despite my doubts, our three sons hiked up to ten hours a day, including one six-hour ‘take-ten-steps-and-stop-for-a-breath’ uphill climb to reach a summit over 4000 metres (14,000 feet). All of us suffered at times with altitude-related headaches and exhaustion; it wasn’t easy. But our two sons with the chronic lung condition led the pack throughout the trek, stopping only to breathe in the stunning views of the snow-covered Andes Mountains. Their courage, energy and optimism inspire me and get me out of bed when my own hopes ebb.
The reality of our day-to-day lives is quite removed from the beauty and inspiration of the Andes Mountains. Instead we often scrounge around through a sea of tablets and treatments to dig up enough hope to get us through the day, like crumbs of sustenance.
If this is the gutter of life then we can be thankful that, as Oscar Wilde said, at least we’re not alone and nothing can prevent us from seeing the stars.