Pride, a lot of it, no matter how skilled he was at thinking and pretending that he was a humble man, some pride got locked up in those things that he worked so hard for. He may have been more humble than average, he may not have been, but humility always has some gaps in its wall, pride has its lanes. Most everybody needs an opening in that wall. The lucky people are privileged with the notion that they have the ability to to work towards claiming something to be proud of. A tricky companion to this; the more invested one becomes, the more stress gets attached to that process. Of course this comes with traps and tendencies to claim credit that is not ours. Is not happiness and contentment best served when pride is connected to something that is still a work in progress? 

.

Unlike many, he knew that he was never the very best. He was comfortable in his place. Many are not comfortable in their place, which limits them, isolates them, for to be comfortable in one’s place, one must continually show up. His theory went something like this; ‘If you don’t keep showing up, what you think might be your place, tends to start diverging more and more with what actually is your place.’ Sudden, large place changes are very hard to take. Many a good thing meets their demise at the hand of one coveting what used to be.

 

Another option is not to care. He tried that numerous times… couldn’t seem to make it stick. Many of his friends, family and peers respected him for these abilities he had worked on, though others rarely notice or care as much about someone else’s abilities, as someone might think that they do… except for mothers, perhaps.. oh, and the guy holding the ladder you’re standing on… yah, that’s pretty much it. He did not fully realize how much of his identity got wrapped up into these things.

 

******

 

He had cheated in this game of life, a little, along the way, though not intending to. It is expected and encouraged, that everyone should end up with a good, basic skill set. Teachers tear their hair out trying to make this happen,. His strategy through life tended towards getting better and better at what he was already good at. There are clinical diagnoses for children with these tendencies, but it seemed to be largely a matter of interest. 

 

There can be certain benefits to this method as respect and reasonably decent success was afforded to him, in his lane. Some of his weaknesses were laughable, and always remained that way. With a little guidance from a mother who could be a shy pussy cat, or a lion, depending, the teachers agreed to keep sending him onto the next grade, though a rule or two had to be overlooked, here and there. Frances Eckert Frei often didn’t come across as wise or worldly, but she was.

 

University:

 

The bell curve projected on the front wall of the giant lecture hall made him laugh. In his seat and all those around him sat the first year students of University of Missouri School of Engineering. The professor, who was smaller and farther away than he had ever seen, was trying to impress the students with a pep talk. The bell curve represented the high school class placements of the new students in that room. The point of the endeavor was to impress everyone with just how elite they all were, for the peak of the curve was swayed way towards the tops of the classes. Now, the funny thing about bell curves is that there’s usually a point where the line gets close enough to, and parallel to the zero line, that they simply save some ink and quit printing it. David’s high school class placement had somehow fallen off the back of the tail. ‘Hmm’, he thought to himself. ‘Only four minutes into my college career, and it’s going so swimmingly!’ 

 

It was never asked and it was never said, but there were likely two reasons for this graphical misplacement: First was that he adored the word ‘go’, and all of the adrenalin that goes with the pressure of it. He always tested better than his grades. Perhaps this was his best escape from procrastination and distraction, which probably was the root cause of falling off the back of that graph, in the first place. The second reason was likely a payday from working to get better at what he was already good at. An ACT ninety ninth plus percentile in science and a reasonably ok score in math, attached to his laughable grades in high school, probably had two advisors in college admissions trading bets with each other.

 

Any such bet would’ve been settled in three years. Poor study habits, along with things like playing with a newly obtained car transmission in the dorm room, produced grades that are conducive for landing a job in properly sizing air conditioning units for new buildings, not sending rockets into space. The transmission was destined for a second generation, dirt track stock car, which he and his friend raced three nights a week during the summers. Though his father thought it lowbrow and a waste of his time, running a stock car team on a shoestring budget was a rather amazing education.

 

Owning and running a small business was a plan that grew in inverse proportion to his grade point average, but what small business? Library books were checked out. “What They Don’t Teach You at Harvard Business School”, by Mark McCormack, being top on the rather short list. It’s such an easy draw for struggling young people to envision shortcutting the system. Rather than enduring all of the work and rigors of the long slog of traditional learning and practice, I will sneak around the curtain of the great Oz, and learn the tricks to outsmart those old fuddy-duddies. That being said, it’s a very worthwhile book.  And that strategy can work beautifully, sometimes. He first considered buying out a business, but purchasing established businesses is a scary place. It’s a tempting jump start, but the books and balance sheets produced by the owners jumping off of the ship can’t always be trusted. Though it was interesting to learn about brass electroplating, and old fashioned printing shops, starting a construction company from scratch was decided to be the smart move – though painfully slow going at the beginning.

 

Five years later, we had a number of employees and were netting enough money to make a good living, but the volume of money running through the company as compared to what was left over was off the charts; that’s a very bad thing, any little hiccup could have big ramifications.

 

*****

 

At age thirteen, he had started working for the family stained glass company, part time, of course. The prospect of it excited him. He was soon to be a big boy. Money was going to start rolling in, and in significant amounts for this thirteen year old; soon to be followed by a puzzled look, and a question, “What happened to my paycheck? And who’s this FICA dude?” Though the job had some complications, little training was needed, as he had sat on a shelf for many hours, pestering his older brothers, as they had done that same job. Pestering the workers was an easy task to accomplish, as the stained glass company was attached to the house, but nobody seemed to mind. Just as the money started to flow in, the last of his brothers left for college, all of whom envisioned themselves doing something different with their lives.

 

As with many families, he was quite eager to please and impress his father, his mother too, but mothers are so often taken for granted. For better or worse, but probably better, his father was more than happy to let him. During his early high school years, there was more of this work than could be done by one person, so the young man started hiring his high school classmates. It was through some completely unspoken agreement that the father stayed completely out of the management of this ‘branch’ of the company. 

 

Empowering might be the expectation, and perhaps it was, a little, but the ‘big boy’ excitement was quickly met with a bucket of ice water in the face, for now he had personnel problems. Some of the employees were not very good. Some figured it was playtime; or that showing up was optional. This newly formed HR department just popped into existence with an unpleasant puff of smoke. The desire to deal with personnel ranked down on the list, but crying “Help, I failed” to his father ranked just below that. After a year or so, I was no longer hiring and managing my classmates. What felt like a big calamity of drama to a young high school kid soon passed and was put into perspective. It was no big thing. The father he was trying to impress, did not realize nor desire the stress that his son so easily brought on himself nor wanted. 

 

********

 

Identities begin to intertwine with anything that one cares greatly about and offers up much effort to. The construction company that he and his friend created, CDI Construction, which had started out as Continental Decks Incorporated, certainly weaved its way into his being. Two of his employees had gotten him into off road motorcycling, which he raced for several years. They also had him driving in a caravan of church vans full of teenagers to a ski trip to Colorado, in the official role of ‘chaperone’.  Being only in his mid twenties himself, this required some heads to be turned the other way.

 

Work for CDI Construction was a little slow one summer, while the family stained glass company was swamped. The solution seemed clear; one identity started to provide services to the other identity. After a couple of jobs, it became clear that carpenters don’t like hanging off the side of churches. Who knew? It never bothered me.

 

After hearing enough grumbling from CDI carpenters about something to do with ‘having a wife and kids’, he decided that it would just be easier to go back to the older identity, where he stayed from his late twenties until shortly after contracting ALS in 2016. 

 

Though the move back solved a number of problems, a distaste for being a salesman and a temperament that was better suited for solving a few big problems, than juggling many small ones, it was very difficult to give one up for the other. One company had a knowledge set that had started from childhood, since he grew up where the windows were made. It was also attached to quite a history but he didn’t really care about that. His father didn’t seem to care about that either. A trait that he seemed to pick up from his father was a feeling that you are not your ancestors, you are only you. Add to that, you are only as good as your last project. His father had much to be proud of, but his father did not talk about his past, gift-wrapped in pride. Robert Frei’s past was a plethora of stories; some good, some less than good. The intent seemed most often just to say something interesting, garner a laugh, perhaps continue tradition and history by passing it down orally, though it never felt like a lesson, and perhaps even bestowing practical knowledge. On this last item, the practical knowledge was conveyed by doing things together, whether it be work or play, most often without many words attached; just do. Robert Frei’s stories, while funny, seemed more fitting for lessons in what not to do. As we all chuckled along with our father, the lessons felt unnecessary, for it was unlikely that any of us would have used a small torch to partially melt the stems of every one of our mother’s wine glasses, then putting them back with the rest of the finest glassware with the tops all tilting this way and that. Bob and his brother Tom had even forgotten about the whole incident, until being rudely awakened in their bedroom, on the night of a large dinner party.   

With the motor neurons heading for the exits, it didn’t take very long in his customary place on the scaffolding to see what those carpenters were griping about, decades before.

 

********

 

Though some traditional sports were played during grade school, success and enjoyment in those were quite elusive.  His early life had consisted of skipping so many flat rocks into rivers and lakes, one might think that he was trying to fill them in. All of this skipping produced a low, side arm throw that could glide a rock nicely along the water, but was positively awful for throwing out any base runner. Plus, he just didn’t like it. A real interest in training and competing in sports didn’t start until adulthood.

 

Motorsports quickly gave way to road cycling, mountain biking, orienteering and trail running. These sports seemed to be connected in some way, as there was a lot of overlap in the people who participated. After well over a decade of participating in these individually, the sport of “Adventure Racing” magically combined each of these skills into a neat little package, while also gaining traction across the country. Though adventure racing throws in the the addition of paddling, his family had done that all of his life. It was a match made in heaven.

 

 Having started orienteering in the early to mid 1980’s, made him the navigator on almost any team. Again, working to get better at what he was already good at was paying off.

 

It turned out that training for these kinds of sports can be done in conjunction with life and in very inventive ways. Efficiency!! In addition, the friendships that can be forged by people doing hard things together can sometimes bring more enjoyment than one might have bargained for.

 

With all of his work and efforts, failures and successes, what had he learned? With his hand in creating or shaping small, little institutions, had he come to an understanding of what his identity actually was? During his physically active life, identity, as an entity unto itself, was little on his mind, for thinking of it in this way is a made up construct in the first place. Over thinking it as an entity unto itself is probably a form of narcissism. One just does life. 

************************

Repurposing neurons:

The endeavors that one focuses on, slowly changes a person, perhaps most powerfully by shaping one’s social group. Evolution has inclined our minds to work, play, reproduce, and be social. What shapes what? It’s so intertwined and a human is so many things at once. 

 

When major life changes are forced upon us, our internal entanglements with the projects and entities that we have poured our thoughts and efforts into must slowly begin to diminish, for if they do not, we are stuck with only that which is gone, or worse, being taken away. Our mind will have less capacity to start to repurpose itself; enjoy new endeavors without all of the old clutter. This is so much easier said than done, however.

 

More than most, he did not have overarching goals in life, or much of a bucket list. Though there were definitely goals, they tended towards doing what he was already doing, more and better. This became especially true with skills of an athletic nature, both in sports, and in work. Being strong, fast and agile can open up the world and be so empowering. A lot of things can be empowering, yet we often overlook just how much until they are experienced. It worked well and provided a perfectly adequate amount of joy, for the activities that he enjoyed were quite sustainable, just so long as there was a little bit of tweaking and exploring thrown in. A love of nature, mountains and rivers usually made this an easy task.

 

On a long project in New Orleans, one summer, he found himself in a fitness pickle, which turned out to be a happiness pickle. Though the music and nightlife was quite impressive, the terrain of New Orleans is either flat pavement, or water. It was a learning experience. Running, just for the sake of running, without the wilderness to enjoy and explore, turned fitness into a chore and was mentally unsustainable; willpower, standing by itself, isn’t worth much in the long run. It took months to figure out a way to make it work. Eventually, devising a system where a long kayak could be towed behind his bicycle and then get all packed up into a single watercraft opened up the wilderness. It’s good to be an amphibian in the wetlands. To round it out, finding weekly bicycle races around the downtown basketball arena to compete in provided an excitement and a certain amount of nervousness to look forward to.

 

Imagine that, a little nervousness to look forward to. A little is good, too much is… Well…too much, could drive one to quit. 

 

The sport of adventure racing was a lot of fun, most of the time, and not fun at all, some of the time. The trick was being able to take the bad with the good; much like life.

 

It seemed that every team he was a part of was leaderless and rag tag. It remained that way even after being sponsored by an outdoors outfitting store named Alpine Shop. Leaders, chains of command, these are the things that are connected to one’s day job. They are what companies and clients must pay you to do, because it turns things into a chore and takes time away from what one would rather be doing. Team Alpine Shop began doing very well in the late 2000’s. A fine line began to appear, the one that separates enjoyable hobby from the drudgery of work. Finishing well and winning many races, along with capturing the National points championship in 2009, ended up turning ourselves into nervous wrecks. None of them, Carrie, Jeff nor David, came from a youth filled with success in sports and might all have suffered from imposter syndrome. All of a sudden, they felt like winning was expected of them. They didn’t want to get found out that they weren’t actually that good. That meant that an awful lot of preparation went into covering for not being very good; like training.

 

********

 

An early problem: His feet were getting too weak to work the pedals in the van. There are companies that install hand controls, but besides being expensive, they require significant driver training from an industry certified teacher. Unfortunately, these teachers were in very short supply, booking start times many months out. His feet and drop foot were getting weak enough that judgment time for quitting was about, now! 

 

As it turns out, this certification is mostly to ease the liability of the providing companies, for the actual laws in Missouri that cover these things are rather vague and undemanding of proof of safety .

 

It took about three days of thinking and daydreaming about various designs, about sixty dollars of steel pipes and hinges from Lowes, some welding, and a couple of bicycle parts. It also took a willingness to drill holes in the dashboard wherever might be needed, and voila! Hand controls! With only a small amount of adjusting, the contraption worked smoothly and well, though the “gas pedal” took a very light touch.

 

Occasionally, there are things in life that seem just too good to be true. This was one of those, for his step grandfather, having had a bout of polio in his youth, was the owner of a car equipped with hand controls. It was just about the time that David had gotten his driver’s license, when his step grandfather could no longer drive and needed shuttling. One could still drive the car with one’s feet, but why would a sixteen year old boy want to do that? It was cool and fun – look ma, no feet!

 

So of course, the newly invented hand controls were fashioned to work in the same manner as his step grandfather’s had. It was also a pleasure to find that the skills learned as a young man almost immediately felt as natural as they had almost forty years before.

 

Airplane rudders have a much lighter touch than car brakes and when you push one in, the other one gets pushed out automatically, which would solve the problem of severe drop foot. Piloting was put to rest, however, for it was time. Plus, rigging hand controls in a rental airplane might have turned a few heads. Though sad, this was purely a hobby and a luxury.

 

Another hobby that sprung into existence because of ALS, was go-kart racing. Many of my friends were kind enough to take up the sport because of my new condition. My friends are all racers and people who love to race, and tend not to worry too much about what they race. It was rough. It was raucous. One friend started bringing a life preserver to cushion the ‘rare’ impacts, for he had broken some ribs in his past. Towards the end of being able to do that, I couldn’t work the brakes, despite shoes being bolted to the pedals and a plethora of bungee cords. Luckily, spending my early twenties dirt track stock car racing, three times a week, taught me how to turn the go-kart sideways whenever I needed to slow down… Or mostly whenever I wanted to slow down. I wonder if that’s why Jeff brought the PFD?… Nah, couldn’t be that.

 

******

 

His identity started to shift towards the social, which was as enjoyable as ever, for a while. It remained enjoyable, even as speech slowed to a crawl, and awkward timing turned playful conversation into a more performative activity, or passive observation. Pick one.

 

Though his progression with ALS was at an average rate at first, even a little above average at times, it eventually slowed down to a degree that allowed for a sense of longevity. Imagine that! After years of feelings of ‘doom and gloom’, while terrorizing the mountain bike trails on fast electrical contraptions, came an amazing amount of calm, and sense of forever, while sitting in a power chair, on a machine doing 100% of the breathing; he can barely move any muscle below the face, foam drooling down his face. 

 

The surprising fact is, after being depressively horrified by the paralyzed, drooling patients he made witness of, during his early visits to the St. Louis University ALS Clinic, seven years earlier, life could still be quite grand, at times…For he had full mental capacity, a method to connect with the world, problems to solve, continued observations of how the world is funny, many of the same interests as before, some new interests, a newly tapped into creativity, enhanced by some extra time and perhaps just a little repurposing of some recently unemployed neurons.

 

How could the judgements made of the certain misery of those others, in such surety, long ago, be so thoroughly amiss..,.,

 

Identity then.,

 

For even stripped of the external possessions, that I still have…My identity.

 

*******

 

Events happen, physical ailments happen. Life is forever changing and you can’t go back. How tedious might it be if it didn’t, though giant changes and take aways are certainly a challenge.