Preface
July 1991
I was sifting through my limited clothing options, already late for my summer job in the law library of a mid-sized firm in downtown Chicago. Having just graduated college, within a month I would be off to New York City to attend law school. Nevertheless, I was cherishing this last opportunity to live in Chicago and to spend the summer with my closest friends from UW-Madison who would be staying in the Midwest.
With the little income I had from my few weeks at the job, I had purchased several professional-looking dresses from a discount merchandiser near Michigan Avenue. Standing by myself in my rented one-bedroom studio, I hesitated only for a moment, and then reached for my favorite–a pretty dark purple dress. I placed the dress on my bed, and zippered it down using each finger and my arm for leverage. Given my shortened forearms, the ability to zip a dress while wearing it, was physically impossible. At that moment, I was sorely missing my sorority sisters, who had always helped out when I needed a zip.
And so, I proceeded to put my new outfit on, leaving the back partially unzipped, with my bra exposed. As I finished the final touches on my hair and make-up, I grabbed my purse, preparing for the bus ride along Dearborn Street to my office downtown. “Thank goodness you are here today, Kevin!” I had just emerged from the elevator, elated at the sight of my doorman. “Good morning, sunshine! How are you doing this beautiful day?” I immediately looked around to make certain the coast was clear. Once confirmed, I swung around, exposing my backside to him. Without a word, Kevin knew the drill. He proceeded to zip me up and sent me on my way. “Thanks so much. Alan is here for the late shift tonight when I get home—are you sure, Kevin?” “Positive, Meg. Have a great day.”
August 1995
The day was scorching and humid, an awful mix in New York City. Down in the subway, it was even hotter. Despite the temperature, I wore an attractive red sweater over my black jumper and wouldn’t dream of taking it off, given it would show my partially exposed back. As I sat on the number 4 train downtown to my job, I began to perspire.
When I arrived, my new work friend Kim was waiting for me. “Hi Daryl!” “Hi Daryl!” I chimed back. We borrowed this joke from an old Bob Newhart television show where one of the characters always introduced himself by saying, “Hi, My name is Daryl. This is my brother Daryl, and this is my other brother Daryl.” This was our code language. And so, following our pre-arranged protocol, Kim followed me into the bathroom and zipped me up. “See you at 6pm Daryl. Let me know if you need to leave earlier or later.” I beamed at my friend. “Thanks Daryl. See you at 6!”
October 2012
As I packed for my trip to California for work, I hesitated. Could I somehow bring my favorite white, black and grey dress if John wouldn’t be there to zip me up? Thinking through my options, I came up with a plan, and dialed my closest friend from the office who would be joining me on the trip. “Julie, when we are on the West Coast, I know this is a strange request, but would you mind meeting me at my hotel room one morning and then later at night to zip up and down my dress?” “Sure, no problem. Just text me when you want me to come to your room.” To my relief, she seemed totally unfazed.
But when the morning came that I was to wear my dress, Julie was a no-show. I checked my phone, and found her text. “Hi. Can U wait 4 me? I am stuck on a conf. call. Sorry.” But I had to get to the office, and was left with no choice. As I stepped onto the elevator, I began to say a slight prayer to myself that there would be a female working behind the desk downstairs. To my relief, as I stepped into the lobby, I saw Julie from the corner of my eye, on her phone call. Motioning to me, I quickly walked over, turned around, and she closed the deal.
As I sit here writing this blog post on an early morning flight back from that same business trip, I am incredibly parched. After an intense week of work and late final night, I fell asleep on this flight and missed the beverage service. Although I had the foresight to buy a water bottle at the airport, I haven’t been able to twist off the top since for whatever reason, I can only open the Poland Spring type. That alone took me years and built-up strength to accomplish. I think the first time I was finally able to independently open a water bottle was a cold Poland Spring, circa 1998.
Lately, I have been giving the reality of true physical limitations a lot of thought. And, I have a confession. In the mornings, when I pack Ethan and Charlie’s snacks and lunches before they head off to school and I off to work, I must admit I “pre-open” certain items for them. While they can certainly handle sandwich bags, there are other things like water bottles and plastic bags filled with pre-sliced apples that get a little cut, tear or twist from me before they go into the lunch bags. I started doing this a few years ago when, one day in Kindergarten, Charlie had a friend over for a play date who told me that his big sister didn’t want to have to sit next to Ethan because she ended up having to open things for him. At the time, Ethan was in the 3rd grade. I can remember the moment as if it were yesterday. As I heard the story, my heart sank and my stomach tightened. I knew there were simply some items he could not independently manage. My holding back would not change that fact. So, from that day forward, I began intervening….sometimes.
My mother and father raised me by never proactively helping me with anything; the assumption was always that I would figure it out myself. This type of parenting was not only appropriate for me, but arguably is the most ideal way to raise a child born with any type of physical limitation. As I have written in past posts, I cherish what my parents did for me (or actually, didn’t do for me) along the way. I am sure it has made me the fiercely independent woman I am. But I wish it were that simple. For example, is it possible that my parents never zippered me up as a child? As much as I like to say I can practically do everything but play the flute, the reality is, I have my limits. Given the reality of certain physical limitations that are undeniable for me still as an adult, I couldn’t have been that independent. As a parent of children born like me, I struggle with finding the right balance between holding back and intervening. I truly believe that it is in all of our best interests to resist the urge to do things for our kids. They have to be free to navigate their lives, even the hard parts. But by having “given birth to my difference,” as I like to put it, I have such unique insight into what really is possible for them, and what isn’t, at least for now.
In the cases where any physical attempt is essentially pointless, the only option becomes swallowing their pride and asking a teacher or another student to help. I suppose it comes down to this: In this context, my parenting moment is no longer about encouraging independence. Rather, the priority becomes preservation of their dignity. Our sons walk this earth just like their mother, where the assumption by most is that there is a lot we can’t do, regardless of reality. Just the other day Charlie commented to me (with frustration) that on the playground during recess, a kid he didn’t know asked him if he was even able to throw a ball. By my helping them pre-open the tightest of water bottles and impossible wrappers, I allow them to create the illusion of total independence at school, even where they are physically lacking. Maybe, just maybe, seeing they are self-sufficient during mealtime will mean that other kids will not always jump to assume our boys need more help in other circumstances they are freely independent.
Believe me, I know as they grow-up I will not always be there, and inevitably they will have their own version of the unreachable zipper. But for now, this is my way of providing some invisible support. For our sons, I am the doorman in the lobby in Chicago, I am my friend Daryl or Julie from work, where the physically impossible becomes possible….. with a little help.
Postscript
With one hour of the flight left, I just sucked it up and asked the guy next to me to open my water bottle. He said, “No problem.” Perhaps not for him….
