Dear Mom & Dad,

I decided to write a letter to my parents. These are the words I would tell them if I could have as they watched me over 20  years ago in the hospital incubator, unable to hold me and terrified of what will happen.


It's not your fault. It's not my fault. It's not anyone's fault, but can I just say this anyway? I'm sorry. I'm sorry for all those hours of worrying, crying, and having the weight of your tiniest child's unknown future constantly on your shoulders. I cannot begin to imagine what it will be like to try and provide everything for me and then watch me get hurt unexpectedly, inevitably, and knowingly - hundreds of times over. What will it be like to take eight steps forwards with me and then watch me get forced into taking ten steps back? I think about that a lot as an adult and sometimes I wonder if I could ever be as strong as you guys and raise another human being in that similar process.

But what I am about to say is probably the most important thing for you to know: You will get through it and I will be fine. 

My body has many deformities and limitations but I wish I could have been aware when you guys realized my brain is "normal." Was it like someone had thrown you a life jacket in the middle of a raging and darkening storm? Such hope! You will raise me to appreciate hope and to pummel every crumb of its existence out of every situation. Thank you for that. And thank you for pushing me in school, not just pushing me but demanding that nothing other than perfect would be acceptable. This would drive me insane in high school, I will push you away, be confused, even be angry with you but I will come to understand why you did it. Education and the advancement in medicine are the two sustaining aspects of my life that I know I will always be able to count on. Those gifts are priceless and literally life changing.

I will learn how to play the piano, walk, jump, swim, read, write, dream, and have empathy. Then I will learn how to help others, listen, respect, admire, envy, comprehend, and problem solve. I'll always learn how to communicate, work together, be patient, love, build stamina, rehab, heal, think critically, and be innovative. These and so much more will be the bones of my life, the skeletal system to my future - the scaffolding that is more iron tight, forever unbreakable and the stuff that my faulty collagen will never be able to affect. Thank you for all of that.

Me, being observant and critically watchful as usual.

The sometimes clumsy dance you would do between caring for me and giving attention to my "normal" brothers is how I understand what it is to be human. No one is perfect and we can only try with our best and most genuine intentions at heart. Don't ever think that I don't know you are trying your damnedest to help each of us discover what we are capable of, pushing us - sometimes to the point of failure - but then always forcing us on-wards. There was always such little time to feel sorry, to take pity, or to stop and dwell in our faults.

Today I am not so great at accepting my limitations and realizing when I need help, but I am learning slowly. I don't regret the decisions you have made for me, medically related or otherwise - I trust that you know what's best, and at times now I will hear your voice in my head when I need to make a decision on my own. I am fortunate and forever thankful to be able to embody all of the successes you have armed me with, able to keep in mind the lessons from failures, and now I do not shy away from taking a stab and discovering more of the potential that you first instilled in me so many days and tireless nights ago.

With love & utmost appreciation,
Sandy

As Subtle as Snow in April

Snowflakes laughed gleefully down from the sky, it was April. April first. I can assure you that no one else in Boston was amused. I was taking my usual lunch break at the Barnes & Nobles Starbucks down the street from my office. A cup of hot chocolate in one hand and Cutting for Stone in the other, it might as well have been any other snowy afternoon in December. But it was April and everyone was a little thrown by the flurries. I looked up once in awhile to watch nannies chase toddlers around in snow suits as toys fell out of strollers, students were studying for exams, and old people were flipping through retirement advice in magazines. From the corner of my eye I saw a lady slow-munching on a sandwich, her thoughtful chewing was paired with her watchful eyes on me. I sat there for my full hour of a lunch break and felt the cold snap of her eyes on me the whole time. 

We've all done it ourselves and have been the subjects of staring too. Whether it's the full deer-in-headlights gawk, the sly glance from the corner of your eyes, the sidelong analysis, the quick look 'n whip around, or the child's blank stare - we all know what it looks like. But even more so, we all know what it feels like. Sometimes, for me, it's like a brush on my shoulder - someone picking off some lint off my shirt; a quick attempt at checking out what's 'not quite right' with the picture. Other times (and depending upon my mood) it can feel like an affront to my existence, like hello, whatchu starin' at fellow human? 

When I was a kid I never understood why people stared at me. I have two arms, two legs, a head, a face, hands, fingers, toes, eyes, nose, mouth, ears, hair - and when I looked at the other person I saw similar features. But I recognized that unlike them I was not so curious about their features as they seemed to be about mine. In middle school my parents told me that they were staring because my motorized wheelchair was so neat looking. I had to admit that it WAS pretty sleek. My speed-mobile was silver, fast, and well, fast. But even without being in my wheelchair I was still stared at and this confused me. I remember distinctly that I would be at the YMCA pool with my brothers - swimming around like any other kid and getting splashed. The other kids would look at me curiously, and though I could see the thoughts going through their heads, I didn't understand why they had to stare at me while thinking those thoughts. 'That girl looks like she's 12 but she's SO SMALL! And what is that scar on her leg? And why is her head so much larger than the rest of her body?' These and other thoughts were, and are, about as loud as their eyes were round with curiosity. My brothers would usually be floating around nearby just in case I was accidentally pushed or kicked in the water. A few times they would mouth at me "whatever, just ignore them." 

To be honest, I still don't quite get it. But it doesn't bother me as much these days. I've 'grown used to it' and while some of my friends will tell me "that's wrong Sandy, you shouldn't have to get used to that behavior" I'm honestly not quite sure what else to do. I've worked on my own "response stare" back at people and depending on my mood this look will vary. I can either respond with a "um hi can I help you?" look or a "hey what's up" smile. Most of the time it's the latter and I've been surprised to see how many awkward gawks have broken into an upturned smile in response. When this happens I somehow feel like some kind of ambassador for other disabled wheelchair users. Like, hey we're friendly and are capable of friendly social interactions that won't spread germs to you too. The tilt of the playing field during these moments is precarious because I am never sure how other people respond, these days I just see it as another small risk I am privileged to take every day. 

60min had gone by. Her stare had become such a silently inducing distraction that I found myself re-reading the same sentence over and over again. I looked up from the book every now and again, met her eye contact - smiled, even gave a smile with a nod of my head. Still she was relentless, she chewed, blinked, chewed, blinked, chewed, blinked, the rhythm began to drive me mad. At long last I dog-eared my page, went over to her and said "excuse me but your staring at me is about as subtle as snow in April." And with that I left and returned to my work.

Other ways to counter curious eyes:

• As with any other topic in my blog, each situation may be different so please use your best judgment to respond appropriately. In some situations it may be a young child who is just awkwardly curious, in other cases it may be a middle-aged adult who should know better.
• It never hurts, at least in my experience, to give a simple nod and smile. You may find that it actually surprises you what people will do in return!
• Just say "hello" back 
• If the silence is thick with snide curiosity, and if you're comfortable with it, meet their eye contact and don't break it until you or they move along.
• Wave hello
• Simply ignore it if you can or prefer