I have reached the top of the chairlift at approximately 11,400 feet above sea level at the Highlands Bowl in Aspen, Colorado. Amazing technology has brought me to a spectacular place that only a small percentage of the human population will ever get to experience.
Yet, before me stands a peak that is another 700 feet in elevation. It will require many small, yet careful footsteps to reach yet another heavenly spot above 12,300 feet that even fewer will get to experience in their lifetime. And the number who will get to accept the challenge with cystic fibrosis - significantly fewer.
The steps in the snow are pre-packed. They are baby steps that require an even pace, and complete concentration on breath and balance. At times, the knife-edge I walk along drops straight down on either side of the 36-inch wide path. The air is thin. Dry. Crisp. My salty sweat evaporates before it even beads on my forehead.
Step after step, it is a challenge that I have accepted, and there is literally no option but to reach the top. Like my cystic fibrosis, the challenge seems unending. But I know that the perseverance and hard work will result in one of the most spectacular rides of my life. One that not many others will get the fortunate opportunity to experience.
I reach the summit, and cannot tell if it is the beauty or the thin air that has taken my breath away. But I wait under the Tibetan prayer flags while my breath comes back to me as I strap into my snowboard.
It is time to now accept the thrill that I have worked for, not only with the combination of technology, and ascent of hiking 700 manual feet, but with the many prior months of conditioning my body to endure this moment.
The first few hundred feet of descent is floating on a clear white steeply sloped cushion of white powder. No trees in sight. The thin air limits the oxygen to my lungs and legs, causing the muscles to burn with such good pain. Balanced with a healthy dose of adrenaline, the real challenge still lay ahead with increasing numbers of trees gradually tightening the available slope for me to use.
It is at this point that I must take a moment, and realize with clarity, that my surviving the next 2,000 feet of descent relies very much on how I choose to direct my focus; as does my life with cystic fibrosis. While the necessity is to avoid the beautiful, yet massive trees that age hundreds of years more than me, my choice of approach is to either: a) focus on not hitting them; or, b) focus on hitting the gaps between them.
If I chose the former of avoiding the monsters, especially when fatigued, the likeliness is that my attention to the trees will gradually draw me closer and closer to them, with increasing risk of painful contact. However if I choose to keep my sights on the gaps between the trees, I am now shifting my line of sight to where I want to go, instead of where I want to avoid.
For me, the later creates a critically different perspective.
My focus in living with CF, and navigating such obstacles, has also been set on where I want to be, instead of where I want to avoid. Translation: instead of focusing on avoiding getting sick, I keep my focus on achieving the best health possible. Again, for me, this provides a critically different perspective.
How do I do this? It is a very conscious and decisive choice.
Much like my decision to hike an additional 700 feet of elevation beyond the top of the chairlift in order to access such ecstasy of immense beauty and terrain, I also choose to go beyond the tremendous medical technology that is required of my time and effort everyday. My daily routine has come to include a smoothie of blueberries and acai juice for antioxidants, mangoes or peaches and carrot juice for beta-Carotene, ginger root for its lung and heart benefits, chia seeds for its Omegas and anti inflammatory benefits, Chobani yogurt for probiotics, and Amazing Grass super food for its wealth of greens.
With each smoothie, I also swallow a handful of non-prescription supplements (most of which I take in both the am and pm) of turmeric for its amazing anti inflammatory and antioxidant qualities, milk thistle for its benefit on the liver, more ginger in a capsule, more probiotics in a capsule, calcium, vitamin D for its anti-oxidation, ADEK vitamins for the typical supplementation in CF deficiencies of fat-soluble vitamins, and CoQ-10 to better utilize the energy of the food I take in throughout each day. I sort out the AM and PM for an entire month supply in an awesome bead-organizer from Michael's Craft Store that my friend Anne showed me. I can take a sleeve of each with a week-supply for when I travel, without the headache of taking the time to figure pills out when I'm just trying to remember my socks and toothbrush.
I eat lots of proteins and vegetables and fruits. I have not eaten fast food (other than Subway) in over 15 years, because the last time I did, I had stomach pains for 3 days.
While I am not perfect with my enzymes and my insulin, I really do my best to keep them on me at all times, and remember to take them accordingly every time I eat.
I keep exercise in my schedule several days a week: whether swimming, cycling, or even walking a mile once or twice per day (ps. I hate walking!). To me it is a necessary supplement to my hours of vest and nebulized treatments, which also gives me the stamina and energy that my body needs in the perpetual combat of congestion.
Most importantly, I stay mentally focused on the gaps between the trees where my attention is on achieving health. When I do fall from fatigue, or occasionally get tripped up by an obstacle, I allow my body the rest it needs for recuperating, keeping awareness of the effort it is going to take to get back up and keep going.
By remaining focused on achieving health, as opposed to avoiding illness, I find I am driven by passion and excitement instead of anxiety and fear. If I allow myself to get psyched out, or intimidated, that which still lay ahead of me will be inevitably more dangerous and scary.
I know that for each of us, the terrain and condition of CF is different. And some of us have many more obstacles in our path than others. But what we all DO have is the choice of where and how we set our sights.
My choice of remaining focused on the gaps between the trees definitely incurs greater challenge, cost, effort and discipline. But the journey I find to be more enjoyable, safer, and one that I would certainly make the hike to the summit again for!
After thought:
This past week, I committed to endeavor on a Vertex study, with the prospect of contributing to yet another significant advancement in the CF treatments, just in the course of my lifetime. The impacts I have learned about from such cutting edge technology astounds me with hope and excitement. Not just for me, but for future generations that may not even feel the congestive effects of CF.
My choice to stay focused on achieving health is with a goal of living long enough, and being well enough to benefit from such advancements and eventually a cure one day.
I am positive I am not the only person with CF with this goal. However knowing the difficulty of maintaining a positive mental approach to the physical demands of CF, I share my own perspectives that have been working well for me. My hope is that anyone else that reads this may find value in it too, yet with regard and respect that not everyone will.
We all face this mountain of CF differently, with different courses and approaches, all with different outcomes. I just hope that each of us can find an approach that finds beauty despite the pain, and enjoyment amidst the challenge.
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