Jig and Jog

My mother was diagnosed with Rheumatoid Arthritis when she was twelve years old.  She has undergone numerous surgeries to repair damage caused to her body in the forty-eight years she has lived with this disease.  She has had knuckles replaced and has gone through countless hours of physical therapy to attempt to retrain her hands and feet.  In my twenty-six years of life, I have no recollection of her complaining or making excuses for herself because of her arthritis.  I know she has been in pain, often, and it always amazes me how she not only continues to work, but refuses to give up because of her arthritis.  It wasn’t until I was in elementary school, in second grade, when I realized my mom was “different.” And it wasn’t until years later, that while I had always thought of my mom as the same as everyone else’s mom, I realized she really was different.  My mom was always different, not because of her disease, rather, in spite of her disease.

When I was in second grade, my mother volunteered as a room mom.  She would come in a few days a week to assist our teacher, Mrs. Grossman with various activities she had planned for us.  Honestly, there is little I remember about second grade aside from my favorite subjects, reading and creative writing. I do remember one day specifically, when a little boy in my class pointedly asked me “what’s wrong with your mom’s hands? I didn’t understand, there was nothing wrong with my mom’s hands.  What could he be talking about?  “They’re all weird looking.”  It wasn’t until that moment, when some boy who’s name I don’t even remember now, told me there was something “wrong” with my mother that everything changed.  I remember being hyper aware of how it now seemed like there were two worlds I lived in. One world was my every day life, where my mother was just “mommy,” and she made dinner, cleaned the house, took me to and from where I needed to go and tried with endless patience to teach me how to knit. Then, there was the other world, where it was suddenly very apparent to me that my mom was seen as different, which even without being explained to me, I knew was bad.  In this other world, it didn’t seem to matter what my mother did that was just like anyone else because she looked different, she was seen as disabled. I didn’t understand this, wasn’t she here with the other mothers, helping out?  Wasn’t she doing yard duty and putting band-aids on knees and elbows just like the other moms?

It took me a few years to finally realize that what the boy in my second grade class was trying to express was that my mother’s hands, from multiple surgeries and knuckle replacements didn’t look like his mom’s hands.  They didn’t move the same way; my mother has had to learn how to do some things in a little bit of a different way to get them done.  To me, seeing them this way every day, seeing them grow worse over the years, they were just my mom’s hands. In fact, it wasn’t until earlier this year, that I saw a picture of my mother as a young girl, before her hands got really bad that it even occurred to me that at one point, her hands had looked “normal.”  Looking at her hands in that picture was stranger to me than seeing her hands with their surgery scars.  Even with the scar tissue and new knuckles, they did the same things as any person with healthy hands did.  What this taught me was that a lot of injury and disability can be overcome, just based on the way you choose to see things.  In conversations with my mother as I got older, she told me when she was first diagnosed she did cry.  She thought it was wholly unfair that she and two of her three sisters would be stricken with this disease.  But, her mother, an Irish emigrant told her and her sisters, to be thankful for what they have and to get on with life.  It may have seemed harsh at the time, but my mother and her sisters did just that.  They went forward at life as if they did not have RA at all. The only time my mother has ever been really hurt by someone’s prejudice against her seeming disability as when she and my father spent two years trying to adopt a child.  They were told by agency after agency that my mother was considered not only too old to adopt, but “unfit,” due to her disability.  My mother didn’t understand, how could she be unfit when she had already raised a child?  Did the years she carried me and a stroller and groceries up a three story walk up in Manhattan mean nothing?  Did the years she’d spent working for various companies count for nothing?  There was nothing she could do to change the minds of these agencies, and that was what really upset her.

Maybe it’s because I have been surrounded by strong women my entire life that it has taken me this long to truly appreciate how amazing my mother is; I took for granted all of the things my mother can do, in spite of the fact that her disability should render her nearly crippled.  Many times her doctors have advised her to stop working, telling her she will push herself too hard. But, every day she gets up, makes the bed, and goes off to work without a word of complaint.  While most people’s mothers probably have this same morning routine, I doubt very much that many of them are missing the joints in their toes, or have knuckles in their hands made of plastic.