Lessons from the Ether: Part Two

Life has many rules and truisms. One of them appears to be that no matter your goals, plans, project, or intentions; Murphy’s Law has a way of swooping in and forcing changes or adjustments. Situations change, new obstacles arise, and you must adjust or watch your plans go up in flames.

In the summer of 2015, I began a project called America’s First Feast, where attempted to grow and hunt all the original foods served at the very first Thanksgiving dinner. I had a very specific way I wanted to complete that project, but had to adjust in several ways to accommodate the needs and desires of others involved in the project. My desire to bike across the country as a goal was being confronted with a similar situation.

I could not leave with my brother with family, and he doesn’t want to be left with them either. Leaving him alone for two or three months at home is obviously not an option either. If I wanted to take the trip, I would have to bring him with me. An idea that is not as simple as it sounds.

The Great American Trail is 3400 miles, but only 52% of the route is on dedicated bike routes. The remaining miles are along country roads with fast moving traffic. I have no problem dragging (ahem his words not mine) him onto dedicated bike paths, but the idea of him riding on a street with passing trailers going 80 mph is a no go.

Dropping the idea was probably the smart thing to do. I had not ridden a bike since 1989. The only time I have ever camped was during a national BMX race when I was fourteen, a lifetime ago. Plus, who gets to leave their job for three months to bike around the country?

But I couldn’t drop the idea. I was already imagining biking down forested pathways, through small towns, and meeting new people. The solution was simple. I would adjust the trip. Instead of biking the entire portion, I would turn the trip into a combination of car camping and biking. In the areas where there are no dedicated bike paths, I would drive them. In the areas with bike paths, we would bike those to their endpoints, and then come back to the car.

Doing the trip in this fashion solved the two issues of safety on the roads and where to leave David. Like in any of other travel situation, where I go, he goes. There was still one problem left, and it's one that other care giver face regularly.

There’s a balance care giver—and parents as well—must create between the routine their disabled loved ones follow and need and pushing them toward newer experiences. It is all too easy to just default to the first, and not push on the second.

Sometimes we do that because it is easier than dealing with the initial or ongoing tantrums or angry outbursts resulting from any change to their routines. This can also be the case when changes in health, job status, etc., force caregivers to make person they are caring for to do things they do not want to do.

But sometimes caregiver—especially for individuals with mental disabilities—avoid certain activities because we do not think our loved one can handle it. It is very easy to harden the limits you think someone has when you handle nearly every part of their lives.

My desire to travel across the country aside, I also had trepidation about how my brother could handle camping, biking dozens of miles a day, and being pulled away from the easy comforts of home. As confirmation of this view, he reacted quite negatively when I had to cut certain foods and started taking him to the gym, after his Doctor put him cholesterol medicine.

In situations like this, it's easy to just make it easy. Do not push. The problem is that stunts their growth, and special needs individuals need to grow and learn new things in life, just like regular people. Their limits are not as limited as you or even they think.

A good example of this is Chris Nikic.

Chris was born with Down’s Syndrome. Despite that, Chris completed an Iron Man triathlon in 2020. I ran across Chris’s story on Youtube and watching it left me in awe and inspired. In awe, because I would not even attempt to think about swimming 2.4 miles in open ocean, followed by a 112-bike ride, and then a full marathon run of 26.2-mile run all in one day. Noope, not going to even try. But inspiration hit me as well because if Chris can do that, then what I was planning to do with my brother, David, is easy by comparison.

There is a lesson that Chris’s story has hidden within it. Hidden, but key. His father did not limit his own thinking about what he thought his son could do. He believed Chris could do it, then set out to implement whatever systems of support necessary to help Chris complete the Iron Man race.

It would have been easy and understandable for a father to say it’s too hard, or even too dangerous. That is not the tack Chris’s father took, and as a result Chris made history in 2020.

Chris and my brother’s situation is different. Chris wanted to do the Ironman race. My trip across the country is my goal, and David gets pulled along because he must come with me. It is not an idea that he said, “Oh, that sounds like fun.” In fact, his reaction was the exact opposite.

This caused me some consternation. I do not want to force him to do anything, but I cannot make decisions of any kind based solely on his likes and dislikes. It is a trick situation that care givers face time and time again. It's hard to remember that care giving or even parenting does not mean putting your own life on hold. The balance is taking your responsibilities in consideration of the life and goals you have for yourself. It means including the needs and wants of your loved one within whatever you decide to do.

For my brother and this trip that meant one, considering what I would do if I had to move to a new state for work, or go on an extended trip for it. In a situation like that, David would just have to get used to use moving, because I’m his guardian. Taking a trip of any sort is the same. That meant telling him we were taking this trip, and he was coming with me. End of story.

But is also means doing everything possible to make the trip easy and comfortable as possible. That means things like larger tents, bed-and-breakfast stays, strong mobile hotspots to let him stream television, a new camera and phone for him to do his own photos and video. Letting him choose his own bike and gear.

Doing that has slowly warmed him up to the idea, and I can’t wait to see him on the road.