LAST HALLOWEEN

I grew up on a quiet street in a blue collar town about 30 miles north of Boston. Not quite postcard New England, but we did have our own horse track, amusement park, and a glider port where I have memories of small gliders being towed behind one-engine aircraft above the town and then hearing and seeing engines being cut to silent as the gliders circled and landed in a commercial field to the southwest of my house. Our neighborhood was mostly ranches and split-entry homes built in the 1950’s-60’s as city dwellers migrated to the suburbs following the construction of the Interstate Highway System. My road ran north-south on top of a hill with 4 side streets coming off the hill to the east. The side streets all dipped down, flattened out, and then dipped down again, connecting with a busier double yellow lined road where we were not allowed to take our bikes. My sister and I walked to elementary school down one of the hilled side streets for 6 years. Coming home from school was uphill, flat, and then uphill again. We used the three manhole covers on the hilly side street as markers on the trip to school and home. Our walk to the neighborhood elementary was not even 1/4 of a mile, but when you’re little, it seems a lot farther.

Our road, and all of the side streets comprised our Halloween route and, like every kid, my sister, and our neighborhood crew annually located the “best” homes to hit up on trick-or-treat. (Read: where people gave out THE FULL SIZE CANDY BARS!). This was also the late 1970’s and early 1980’s, so getting apples, and other fruit was not unheard of. There was one crazy lady (Mrs. Pearl?) who gave out toothbrushes one year, but as we traversed the neighborhood, kids yelled to us that she had run out and was now giving out handfuls of change. We went back. Money is even better than candy right? Obtain money, buy more candy. Good times.

As I’m rambling on here, there is actually a point: Halloween 1984 was different. I don’t remember my costume, but I do know it was cold. I don’t remember who I was with, but I know it was neighborhood kids and at least one parent. I don’t remember any of the candy, but I know the bag got heavy and it hurt my left hand and wrist more than it should have. I don’t remember having a flashlight, but almost 30 years later I can clearly picture the curb, no sidewalks, stairs, railings, front porches and pain. A lot of pain. Let me back up and tell you something that I haven’t shared with anyone until right now…

A month and a half earlier (Sept. 4 1984), was the first day of school. Grade 6 for me and grade 3 for my little sister. We walked down the hill to school as we had been doing for years. It was warm, fall not quite in the air yet, but right around the corner. Acorns all over the road, squirrels running around in the morning sun. I had a new backpack and somehow it must have been too tight because my shoulders had never hurt like this before. I took it off and began to carry and swing it. My shoulders still hurt. Aching and sore. Weird. As I walked, I felt pain in the back of my legs too, and in my ankles. What the hell was this? I ran around all summer with no problem. I remember thinking that it must be nerves on the first day of school. I forgot about it when I got to the playground and saw my friends. Until the next day. Same thing, but this time it also hurt to walk up the 3 hills on the way home. I only remember the first few days being painful, but by the time Halloween rolled around I knew that I was going to struggle doing 4 hilly streets in our neighborhood with a costume on and a bag of loot. I did what an 11-year old thought he should: shut my mouth, and hope that I could keep up and that no grown-up would notice if I looked unbalanced hopping up a curb or using the railing on people’s outside stairs. While the group was focused on candy, I was planning how I would navigate each house and looking for shortcuts across lawns….in the dark. I vividly remember thinking: This is my last Halloween to trick-or-treat. Whatever was going on inside my body was terrifying and there was no way I was going to be able to do this marathon again.

Looking back now, it’s easy to explain. When we are kids, our body turns over cells with incredible speed. This is why kids heal fast, have no skin wrinkles, and are flexible beyond belief. As we age, cell regeneration slows and our bodies age. We all feel it. In the fall of 1984, I was experiencing the first outward symptoms of what would be diagnosed muscular dystrophy. Present since birth, my muscles cells had previously regenerated at a rate that kept up with my development. Not anymore. On the first day of school, I had not walked that 1/4 of a mile downhill to school in months, and so my body had begun to protest. Doing 2 or 3 miles up and down hills in the cold almost 2 months later was even more difficult for my muscles. Up front steps, hoping some porch lights would be off so I could skip a house, and just wanting to get home to warm up and rest. These were all of the first gifts shown to me by what would become muscular dystrophy: THE gift that keeps on taking.

A year later I went to the junior high, which was further away, which meant a car ride to school and no more long walks. Perfect. By Halloween of 1985, without knowing it then, my brain was already at work looking to make the best of a bad situation. I would have a few buddies over, make wooden gravestones, fire up creepy music and bury a ghost in a pile of leaves hooked to a rope over a tree branch to be “risen” as neighborhood kids came by my house to get their candy. Telling others I was “now too old to trick-or-treat”, we made our own fun and kept the Halloween spirit flowing. Even as a kid, subconsciously I was wired to understand that muscular dystrophy was going to change my life, but was not about to ruin it. I hold firm to that view as Halloween 2022 comes around. Who wants candy?

Stay safe, stay awesome, and stay tuned. I’ll take a Milky Way. Full size.