Dan Kominsky
This year I will once again be participating in the Xtreme Hike Virginia to help raise funds for the Cystic Fibrosis Foundation. Why do I fundraise for the Cystic Fibrosis Foundation? Because my wife, Sara, is the light of my life. She has CF, and:
It has not been an easy journey. There have been more near misses than I can count in our years together. She has been through two double lung transplants, sepsis, toxicity, chronic kidney disease, diabetes, hemorrhaging, and more severe lung disease than you can shake a stick at. At this point, she is continuously balancing transplant medications, kidney condition, digestive challenges, etc. She is currently dealing with all of this, plus issues with her nervous system which cause unpredictable flare ups of pain and weakness.
One might imagine that with that litany of issues that she deals with she would take it easy, be cautious, or lower her expectations for herself. That, however, is not in her nature. She spends all day, every day pushing to do as much as she possibly can. She has been gardening, mowing, gathering wild berries, preserving food for the winter, building rain catchment systems, and weed-whacking... in the last 48 hours from when I am writing this. However, due to her ongoing nervous system issues, she cannot safely participate in the Xtreme Hike this year, which means that I will be hiking for the both of us.
While there is still no cure for CF the CFF has made great progress in helping those with CF live with the disease, and reduce the impacts on those people and their families. However, there are still many whom the current treatments do not help. There are those, like Sara, who will spend the rest of their lives managing the complications of living with the consequences of having had a lung transplant (not that I'm complaining!)
I want to be clear that the funds that I raise are not for Sara's benefit. Much of the research that CFF conducts will not be applicable in Sara's lifetime, nor to an individual whose body has already taken on as much damage as hers has. Despite that, I hike so that some future Sara can also chase her dreams without being told that she cannot or should not.
This September, I and many others will rise long before dawn and spend many hours hiking. This year I am limiting myself to the half-marathon hike (as opposed to the full marathon I did last year), since I have other events coming up just days later for which I will not risk being injured.
I will start at o'dark thirty in the morning, hiking by headlamps, and finish sometime in the afternoon. Between now and then I will be doing pretty much weekly training hikes, since the course is always challenging. Suffice to say, it isn't pretty but it is worth it. If you can contribute to the cause, I would greatly appreciate it.
Thank you.
- had a life expectancy of 12 years when she was born
- was 17 years old when we met
- was 25 years old when we got married, at which time we hoped to have five or ten years together
- was 29 when we adopted our first daughter
- was 34 when we adopted our second daughter
- has seen both daughters through high school, and the first one through college
- will be celebrating her 55th birthday and our 30th wedding anniversary this fall
- has lived more than four times her life expectancy
It has not been an easy journey. There have been more near misses than I can count in our years together. She has been through two double lung transplants, sepsis, toxicity, chronic kidney disease, diabetes, hemorrhaging, and more severe lung disease than you can shake a stick at. At this point, she is continuously balancing transplant medications, kidney condition, digestive challenges, etc. She is currently dealing with all of this, plus issues with her nervous system which cause unpredictable flare ups of pain and weakness.
One might imagine that with that litany of issues that she deals with she would take it easy, be cautious, or lower her expectations for herself. That, however, is not in her nature. She spends all day, every day pushing to do as much as she possibly can. She has been gardening, mowing, gathering wild berries, preserving food for the winter, building rain catchment systems, and weed-whacking... in the last 48 hours from when I am writing this. However, due to her ongoing nervous system issues, she cannot safely participate in the Xtreme Hike this year, which means that I will be hiking for the both of us.
While there is still no cure for CF the CFF has made great progress in helping those with CF live with the disease, and reduce the impacts on those people and their families. However, there are still many whom the current treatments do not help. There are those, like Sara, who will spend the rest of their lives managing the complications of living with the consequences of having had a lung transplant (not that I'm complaining!)
I want to be clear that the funds that I raise are not for Sara's benefit. Much of the research that CFF conducts will not be applicable in Sara's lifetime, nor to an individual whose body has already taken on as much damage as hers has. Despite that, I hike so that some future Sara can also chase her dreams without being told that she cannot or should not.
This September, I and many others will rise long before dawn and spend many hours hiking. This year I am limiting myself to the half-marathon hike (as opposed to the full marathon I did last year), since I have other events coming up just days later for which I will not risk being injured.
I will start at o'dark thirty in the morning, hiking by headlamps, and finish sometime in the afternoon. Between now and then I will be doing pretty much weekly training hikes, since the course is always challenging. Suffice to say, it isn't pretty but it is worth it. If you can contribute to the cause, I would greatly appreciate it.
Thank you.
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