When I was diagnosed in 2020, my doctor told me three things:
Don’t lose weight.
I don’t remember because I was still reeling from the fact that he just told me I have ALS.
I think I now weigh more than ever and Kristy and I took the travel part seriously.
Since diagnosis we traveled to:
California from San Francisco to San Diego
The Kentucky Bourbon Trail twice
Ashville, North Carolina
Santa Fe, New Mexico
Orange Beach three times
A 30 day road trip which included:
Texas, Utah, Colorado, Wyoming, Montana, North Dakota, South Dakota, Missouri
A Caribbean cruise
And for those who may be curious how we afford this on disability income, there are two Ways.
We use our credit card points for hotels and flights.
75 % of our trips are gifted to us.
And then I got trached and thought our days of travel were over. We actually cancelled a cruise soon after my trach.
The reason for travel for us was less about seeing places (though we love that), but travel allows us to break up the monotony of life. It gives Kristy and I a chance to reconnect and when we travel with our kids, it gives our family an opportunity to experience reprieve.
The day-to-day grind of this life with ALS is a difficult one. Travel gives us a bit of a break from our lives in a way. It gives us a chance to slow down and breathe and reconnect as a couple and a family. Traveling has proven to be one of the best ways for Kristy and me to keep our love alive as we are not distracted by the day-to-day grind and when we travel with the kids, everything slows down and we are able to focus on one another without distraction.
I am not naïve to think that our lives and travel are different from other large families. However, with ALS I also know that our days are numbered, and these breaks offer us a chance to reconnect and reboot.
For this reason, we are getting back to traveling. Now that I feel stable with my trach we are going to once again try to hit the road and skies again.