A Collection of Lasts
First some background on ALS and my first symptoms
About ALS: ALS causes weakness with a wide range of disabilities. Eventually, all muscles under voluntary control are affected, and individuals lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, people lose the ability to breathe without support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. (http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm).
For me there were indicators along the way, muscle spasms and slight coordination issues, but the first evidence of the real problem came when working out. Recovered from sciatica, I could no longer do a calf raise on my right foot. No matter how hard I tried I could not stand on my toe.
A Collection of Lasts: Biking
My first bike was a Huffy. My first non-kiddie bike was a red CCM Supercycle with coaster brakes. It was a birthday present and I remember walking into the garage with my parents and actually feeling let down. It was a second hand bike with no monkey bars or banana seat. The down period did not last long. Turned out that the Supercycle was the fastest bike in the neighborhood and even the style was not totally uncool. The bike brought freedom. Last-minute school departures, visiting friends in distant neighborhoods, going to the store, getting to soccer practice and having adventures along the local trails on my own and under my own steam were all possible. I could go to new places, see new things and not be cooped up in a house with what I perceived to be strict and oppressive parents (doesn’t everyone think so when they are eleven?). As with any bike there can be misadventures. One time, running late for school, I raced down the street turned hard on the laneway to the next street and lost it. There was a crew on the street oiling the blacktop and I was going too fast to notice. Road rash is one thing. Road rash with oil is quite another. I was not on time for school that day.
Supercycle circa 1967
My first “job” was a paper route. First delivering the local Italian paper then the Toronto Star, my early teenage bank account swelled. One of our neighbors ran a ball bearing company and imported goods from Europe. Somehow, without consultation, it was decided that my newspaper money would be well spent on a new bike imported from Germany. Not really having any plans for the money, I grudgingly went along with the decision. Turned out that my somewhat negative attitude was again misplaced. This ultralight (at that time) 10 speed racing bike took me from my home in the northwest end of Toronto to the CNE (major end of summer fair), Toronto Island, out to Brampton and many parks and conservation areas oftentimes with a fishing rod tied to the crossbar.
Home to CNE
The ‘60s and ‘70s were in the pre-cell phone age where all you needed to do to keep your parents happy was be home before the streetlights came on. I am sure that my parents had no idea that I was traveling 15 to 30 km afield for adventures and as it happened, misadventures. Drafting behind a passenger bus speeding over 65 kph and being surprised by a 4” x 4” piece of wood in the middle of the road, getting squeezed to the curb by a different bus on a different day and having my front tire stolen 15 km from home (true confessions-I stole someone else’s for the return trip), were but a few.
The biggest misadventure was when I broke the bike. Riding trails far from home with my youngest sister I raced ahead down a hill straight to a wooden bridge after a light rain. When the 90° turn came and my bike totally lost traction, that was it. Straight into the railing went the bike while I went full summersault, thankfully landing on my feet and not in the river gorge below. With the front wheel collapsed, and forks skewed, the bike was a write-off. Somehow we managed to convince a local police crew to get a van and drive us home. Pulling into the driveway my mother said “I thought it was you when I saw the police coming down the street. No one else gets driven home by the police in this neighborhood”.
My wife Vicki and I took cycling vacations. A hallmark of every trip was my first day flat tire. One trip was from Kingston to Québec city where we spent a long weekend with friends (and took the train back). Covering about 100 km per day, Vicki’s only requirement was that we stay overnight in hotels with bathtubs. After arriving in Cornwall we stopped at a motel and ordered pizza and Caesar salad from a local delivery shop. With our immense post-ride hunger, it was greasy pizza but it was the best pizza we ever had. Our second last day of this trip was not quite as expected. Before MapQuest, Google Earth and the handheld GPS there were fold out paper maps; the bigger the dot, the larger the population. The navigator (me) screwed up assuming a large dot meant that there would be a hotel in town. Our planned 100 km day turned out to be our longest ever ride: 177 km. On another vacation we went from Toronto to Sauble Falls to Grand Bend, then back to Toronto. This trip, in late September, was a bike camping trip with at times challenging winds and weather. Our biggest misadventure happened somewhere near Milton riding on a country road. A huge Bernese Mountain dog came from out of nowhere. It rushed to Vicki who fell off her bicycle in fear, only to be licked into a laughing fit.
Bernese Mountain dog
Vicki and I shared seven different houses. Vicki was great at picking the right house, at the right price in the right neighborhood. My only rule/request was that we not be any further than 25 km from the office. I loved to take advantage of the commuter time and bike to and from work. It gave me time to change mental gears and prepare for whatever was ahead. My rule got broken with our second last house which was 42 km from the office. I rode to the office three or four days a week, rain or shine and was good to -5°C, clocking about 8000 km per year, year over year.
My commuter bike was a green aluminum Cannondale mountain bike with front shocks, bought at the Toronto bike show which I modified with slicks, fenders, clip-on peddles, 10 W halogen lights for nighttime, a speedometer/odometer and a pannier bag holder. My commuter speed was between 25 and 30 kph loaded down with a computer, change of clothes, a towel and a repair kit.
One of our houses was in Scarborough. On a typical summer Thursday I would ride the 25 km from Scarborough to work in downtown Toronto, at the end of work ride another 20 km to the west end of Toronto for my softball game, play ball and have a few beers and other inebriates with the boys and then head home a whole 45 km. Toronto has a great bike path system so I was seldom on the road. The 10 W halogen bulbs really helped when riding on park trails at night. Unfortunately, one night, through both bad planning and bad technology my batteries for the lights ran out just as I entered the Don Valley Park system. Riding in the dark I more heard than saw a rustling in the grass ahead followed by some sort of animal rushing onto the path. The animal hit the front tire and then it hit and knocked off one of the pannier bags. With heart thumping in throat I rode another 200 m, dragging the bag before stopping. Then the aroma hit. Hints of gasoline and coffee, I was soon overwhelmed by the smell of skunk. Nearing home I poked my head into the local corner store to warn them of the stench and ask where to find the tomato juice. Stripped naked in the backyard, with clothes in the wheelbarrow soaking in tomato juice, Vicki called out “You got hit by a skunk. Don’t you come in here smelling like that!” So much for sympathy.
Skunk and Bike
Vicki and I used to go on short excursions from home riding down to a nice spot on the lake for a picnic. It was a bit of a hilly ride. One thing you learn when you bike is that for every downhill there is a corresponding uphill. By August 2011 because of ALS related nerve damage and muscular atrophy I could not bear enough weight to stand on my right toe. Sometime during that month we went on one of our picnic rides and it caught me by surprise when pedaling back uphill from the beach. With a calf so weak pushing the pedal was difficult, this was my last ride. Biking was freedom for me: Freedom from the pressures of home and work, from the commute, from everyday cares allowing me an active meditation and to understand my own thoughts. This is what ALS does. You lose your freedom bit by bit. I lost a piece of my freedom that day.