A Challenge for the Whole Family

[Seth Apter of The Altered Page is conducting a Buried Treasure hunt and encouraged bloggers to resurrect one of their favorite long ago posts. I like this one. I may put up a couple more golden oldies to follow. Then back to the normal sturm and drang of the present.]

It’s the 13th anniversary of Patti’s accident. Jack wrote a lovely essay about how that event has effected him since he was just a baby. Here’s a video of him reading it at his school’s literary festival.

The video is above and here’s the text:

A Challenge for the Whole Family by Jack Tea Gregory
It was June 8th of 1995 when the incident happened. It felt like a normal day, nobody expected anything out of the ordinary. My mother was waiting for the 9 train and she was in a hurry. She was rushing to a demanding photo shoot that was very important to her career. While she was standing near the tracks, peering down the tunnel, her stress and the intense heat caused her to faint. She started to fall just as the train pulled up to the platform and the wind caused from the train whizzing past pulled her into the middle of the track, allowing her to avoid any electrocution. However, she wasn’t safe, the way she fell caused her spinal cord to bend and her back twisted, just before a dangling piece of metal hanging from the train hit her. She was immediately taken to the hospital where they placed an iron rod into her back because her spinal cord had been broken. My mother had been paralyzed from the waist down. She could no longer walk and was forced to sit in a wheelchair. Ever since that day, her life and those surrounding her was instantly affected greatly. Luckily, she was able to get through the therapy and with the support of her family, a new child, and a great sense of humor she was able to push past the injury and escape the pit of despair that many fall into. Many people who are hit by trains come out the tracks in different ways; some are bruised and some are killed. Luckily she didn’t experience the latter, but still life has been a challenge. Our family has also recovered from it and is able to say that they have grown used to it.
Living in New York hasn’t been the easiest, there are a lot of places that don’t have ramps or aren’t accessible. Whenever we find a problem we try and make the best of it. For example, when Mom got her first wheelchair, instead of grimacing about not being able to walk, she would place me on her lap and we’d ride down huge ramps and hills together. The rush between fear of falling and the fun of the wind speeding past our faces created a sense that nothing else in the world existed. My old school had stairs everywhere and she often couldn’t come to school performances or celebrations. I would usually try to take pictures of what was going on so that I could bring her a substitute for not having been there. I would bring her my work if we were celebrating a finished work party.
When my mother would pick me up from school, I would look up from the monkey bars and see all the kids starting to crowd around her. They would ask her questions like, “Do you sleep in a wheelchair?” or “How do you go to the bathroom?” Being the kind woman she is, she’d simply answer them as if nothing was wrong. But I couldn’t help but feel separate from the rest of the children. They found it cool and interesting that my mom was in a wheelchair. They didn’t know how it really was though, all the things we couldn’t do anymore because of this problem. We sometimes can’t go on vacation to certain places because the hotel has a flight of stairs or its elevator has broken down. There are a lot of cars that she can’t get into because they are too high for her to transfer into. However, we find ways around this. My father or I lift her up the stairs and we use a small piece of wood that we call “the Transfer Board,” which she uses to slide across onto the car’s seating.
Taxi drivers are our next issue. Since we didn’t own a car, taxis or the bus are our main form of transportation. Unfortunately, only a small fraction of the drivers actually know how to load up a wheelchair. We have to help them to understand how the wheels come off and how to fold up the seat. This can take about 15 minutes and it becomes very annoying after the 20th time.
This incident has changed our life completely and entirely. I can’t imagine or picture how different I’d be if my mother wasn’t in a wheelchair. Most people would think that this is a near to impossible lifestyle but it’s not. We get through each challenge and we do it as family, together. We have as much fun as any other family would; we just do it in a different way.

[Originally posted June 7, 2008]

Staying in touch

Sometimes when I’d wake up in the middle of the night, Patti beside me, I’d wonder if she was breathing. I’d put my ear close, hear nothing, then nudge her to see if she was still alive. She’d stir and I’d exhale. Sometimes she’d wake all the way up and we’d talk. I never felt that bad about rousing her; she had the gift of falling right back to sleep. Sometimes I’d put my arm around her, feel her by me, and wonder what it would have been like if she hadn’t stirred, if she’d gone in her sleep. I’d try on that hollow feeling. But I really had no idea.

A lot of people miss Patti. They send me emails to tell me. They send her emails too. I miss her, of course I do. But I also miss my life, the way it was, so steady — built layer upon layer like a giant oak, habit wrapped around habit, assumption encircling assumption. For nearly a quarter of a century, we built this life and, when Patti’s ended, so did mine. My life was like the second twin tower. It collapsed right after the first one fell.

Now I have a different life. It’s a pretty good one, despite what I would have thought as I lay with my arm around my sleeping love. It has moments of sadness, deep holes in the road,  but it has a lot of beauty too. I love my son, my  mum, my sister, my hounds. I have so many good friends and the generous support of people I’ve never met. To a large extent, they help me fill in those moments of darkness, help me decide what garbage bags to buy or what to have for dinner. They will talk to me on the phone for hours when I need them, will indulge my nonsense, will cook me rice and beans. But they can’t fill in all the gaps.

Jack and I are resilient. We get on with it. But no one else puts notes in our pockets or brings us ice cream or keeps our every doodle in a file like PL did.

I’d love to chat on the phone with you as I walk to work, Pat, just once. I’d like you to reach out in the dark and stroke what’s left of my hair. I’d even like you to just tell me it’s okay to cry. But failing that, I will remember as well as I can what it was like to put my arm around you, even as I walk down the road alone, and I will treasure every day I have, rather than lying worried in the night.

My new life will be bright. Because you light it.

Waisting Away

One of the inevitabilities of being married and middle-aged is the gradual spread of one’s waistband. A souvenir of all those evenings when Patti would bring me a bowl of ice cream on the couch or we’d eat off each others’ plates like Jack and Mrs. Spratt.

Now our pantry is bare-ish. Jack and I shop on Sunday afternoon, buying just enough to provide cold cuts and fruit for  his lunches, cereal for my breakfast, a few other meager things. I shop most days on the way home from work, buying whatever I will cook that night, always a salad, maybe a steak or chicken breast for him, some veggie or fish thing for me. My favorite word these days, Jack complains, is ‘Spartan‘.

Despite these complaints of deprivation, we are both healthy and rarely hungry. I am amazed at how much less I want to eat. It began in those first horrible weeks in late March, when I simply lost my appetite altogether. But once that passed, I found food wasn’t especially comforting, and instead I preferred the gym I had just joined. For the first time in ages, I love pedaling madly on a bike or throwing barbells around. I also find I have the time. When Patti was alive, I so often felt that time spent on myself was time taken away from her (a perspective she vigorously opposed, but to no avail). Now I have the time and control of my agenda to indulge myself in new ways. Fortunately, so far, most of them are healthy.

My newly instituted regime is also a reflection of a new assessment of my age, of how many years I have left. I’d always assumed that Patti and I would march into the grave holding hands and I had no especial interest in outliving her.  Now, however, because I will continue on this march with no one to lean on, I feel I should be as vigorous as I can be. Both my parents are healthy and robust in their 70s and my grandfather just died at 98. Chances are I will be around to choose apples, tap melons, lift dumbbells and fill sketchbooks for a little bit longer.

In the meantime, I need new trousers and a shorter belt.

The journey of 1,000 miles begins with a single step

Jack and I have always shared certain things: pens, a love of R. Crumb, a disdain for Dane Cook. Now we have a new and more complex relationship, one that can be annoying and claustrophobic some times, rich and vital at others. We are roommates, creative collaborators, dinner companions, advisors, and dad and son. And there’s no Mom to act as a buffer, filter, and cooler head.

It can be tough living with a teenager who doesn’t realize he is shedding clothes all over the house or drinking the last of the juice. I’m sure it’s just as tough for Jack living with a cantankerous, soppy weirdo. Despite our differences, we are managing okay, crafting a new sort of life in our man cave, surrounded by chip packages and dachshunds.

Most recently, we’ve taken to sharing a pair of blue shoes that we both coveted. It’s been a true compromise as the shoes are a little small for Jack, a little large for me. The experience has proven useful, teaching us what it’s like to walk in each others’ shoes.

Cleaning up our act

My relationship with my journal is like that with a family member or a friend I’ve known since childhood. Sometimes we are distant, formal, perfunctory, obliged. But when I really need my journal, it is there with open pages, ready to hold me as tightly as I hold it. These days, I need it more than ever, and I am more intense, more candid than usual, as I scrawl across its pages.

I would like to share some of these pages with you but they are heavy going and so I will doll them out a spread or two at a time over a number of days. If you like what you see, come back soon and I’ll have posted more.

Here’s where I began. By cleaning up my apartment, on my hands — dismissing the cleaning ladies who had scrubbed my toilets ever since I could afford them — reclaiming what is mine, filth and all. It is part of a process I’ve embraced, of forming a new relationship with the everyday, taking full responsibilty for every aspect of my life.

Being married means sharing the good, the bad, the important, the mundane. Patti and I leaned on each other in a thousand ways: she would shop, I would cook. I would bring home checks, she would pay bills. She kept up with our friends, I worked late. It was a deep symbiosis developed over 23 and 7/8 years — which unravelled in a heartbeat.

So now I am forced to reappraise all of the decisions we made as a team. Many of them can wait: is that the right shelf to store the wine glasses on? Do we need all of these dish towels? Should we live in New York? Others assert themselves and demand resolution. One by one, I pick them off; making lists, adding bleach, filling my weekends with chores.

Every choice is made in consultation with Patti’s ghost, with serious consideration of what she intended, what she thought I wanted, of how to stay true to her spirit, yet accomodate our changed reality. Sometimes it’s terribly sad. Often, it’s a form of companionship that keeps her in my heart, in my pantry, in my thoughts as I doze off.

It’s daunting, it’s doable, it’s underway.