Or, “Gee – you (used to) walk funny!”
“I’m not clumsy. It’s just that
the floor hates me, the tables
and chairs are bullies, and the walls get in the way.”
and chairs are bullies, and the walls get in the way.”
Unknown
I was born with mild
cerebral palsy (CP), most likely caused because my brain was deprived of oxygen
during birth. I say “most likely” because when I was born CP wasn’t
well understood. Most people believed that all people with CP also had
significantly lower intelligence than average. Since my CP was mild, my parents
decided to keep it a secret. They explained all the oddities away – the walking
on my toes, the inability to run fast and keep up with my playmates, not riding
a bike until I was eight. They didn’t tell the schools. They didn’t tell my doctors.
They didn’t tell me –- not ever. I found out when I went to a neurologist for something
else –- when I was 30. No kidding. When I called my Mom, she denied it, even then. Luckily, my CP is atypical as well as mild. There’s absolutely nothing wrong with either of my arms. I played the piano well, and at one time typed at about 100 words per minute. However, the CP affects both my legs, the right one more than my left. There’s a lot I can’t do. My legs are simply not as well coordinated as other people’s legs, and they don’t have as much strength, and have little flexibility. They throw me off- balance easily. If I over-use them, the next day they are so stiff I can barely walk, and I’m at great risk of a fall. This is the reason I retired to Florida, to get away from ice and snow. I had to minimize the risk of a bad fall.
My parents worked relentlessly at keeping my CP a secret. In our small New Jersey town, there were two pediatricians. Mother took me to one of them for my Kindergarten physical, which I remember because I recall him saying something, and then my mother shouting, “She is NOT retarded! She can READ!” I don’t remember what the doctor said, but it was something about my legs and nothing about being “retarded.” Still, she stormed out and took me to the other pediatrician in town. I’m sure the first doctor called Dr. Pfister and said, “Look, it’s not severe or anything, and here’s how Mom reacted …” because Dr. Pfister never mentioned it that I know of.
Although PE classes were always a nightmare for me, trapped in this (slightly) damaged body was the heart of an athlete. My first attempt was ballet. It was a disaster. I tried to put my foot on the barre … and fell down.
I couldn’t get my feet in all five positions. When I tried to put my feet in fifth position (feet right next to each other but heel-to-toe), I looked like Quasimodo. Then I fell down.
That’s
really not an exaggeration. Ballet class always started with exercises – put
your foot up on the barre and stretch (I fell down), plies’ – supposedly
beautiful knee squats. I had to “gracefully” bend down (straight back, please!
– oh wait, can’t do that), and in fifth position – you guessed it, I fell
down.
After three
months, the ballet teacher saw my mother and me on the street. She said to her,
“There’s something wrong with Susan’s legs. There’s no way she can learn
ballet!” I don’t remember what Mom said, but it wasn’t polite … and it wasn’t
the truth, either. People learned not to mention the obvious to my mother.
He said, “We’re going to play kickball.” I showed him how standing on my left leg and kicking with my right was best for me. I staggered a little when I kicked sometimes, but I never fell down. He gave me some tips, taught me a little more about the game … and then we played a lot of kickball for the rest of the year. I wish I could find that man and thank him today, because he opened my eyes to the concept of compensation. He changed my life.
At the end of fourth grade we moved to Florida, and I had opportunities to swim to my heart’s content. The pool was next door, and the ocean a block away. I lived in a world of water that summer, and with my legs floating, I was physically liberated! My arms and back could do the work. My inner athlete exploded, and I started swimming laps. One day my dad took me to the pool, measured it, and I swam laps with him as my lifeguard. Hours later he insisted we stop. He said I had swum seven miles.
So, thinking I was good at swimming, in junior high school I went out for the swim team. They accepted everyone and kicked no one off. For the first few sessions, the coach was just looking at form doing the Australian crawl. My dad had taught me that well, and I had good form, except, the coach said, I needed to kick harder. So I spent a lot of time with a kickboard, but my kick never got stronger. The basics of CP can sometimes be compensated for, but they can’t be fixed.
Then the coach started teaching us other strokes. When we got to the butterfly, my inner Quasimodo emerged again. The frog kick wasn’t any better. He let me stay on the swim team, but I was the slowest on the team because I just couldn’t kick hard, and there were strokes I simply could not do. I dropped out.
So I tried out for cheerleading, and made it to the finals! But that coach had spotted something, and moved me to the opposite end of the line. “Oh,” I said. “I have to be on this end. I can’t do those moves with my right leg.” She moved me anyway. I fell down.
Meanwhile, after having walked on my toes for 12 years, I got tired of being teased about it. Remembering my kickball lesson, I went into my bedroom, which had a full-length mirror, and figured out how to walk flat-footed. Four hours later I had figured out how to walk normally. If you saw me walking today, unless I were very tired and you were very observant, you would never spot a hint of an odd gait.
This was a “Eureka!’ moment for me. At age 12 I realized that although my legs couldn’t do everything, with practice they could do some things I wanted them to do, often by using my arms to help. I learned to do a lot of things in alternate ways, capitalizing on what my left leg could do while figuring out what to do with the right one. Since that day I have gone through life “alternatively coordinated,” but people rarely guess.
Then one day as a young adult, I saw Edward M. Kennedy, Jr. on TV, skiing downhill. He looked so free! The leg movements didn’t look all that hard. He had had a partial leg amputation due to bone cancer when he was 12, and I figured that if he could learn to ski, then maybe I could also. So when I was 29, I went to Aspen, where they did teach me to ski. I always used shorter skis, and I didn’t become an expert, but I had fun and in fact met my second husband, the father of my children, through skiing. There was finally a sport I could do -- not competitively, of course, but I was happy just to be able to ski. Using my body “alternatively,” I also took up spelunking, rock climbing and even rappelling.
Meanwhile, in Florida I had seen my
first marina and was fascinated by sailboats. I saw how physical sailing was –
just what I wanted! And it looked as if I could probably do it. In fact, in my
first, brief marriage, my husband knew how to sail, and we bought a little 14’
sloop-rigged dinghy, sailing it on a tiny lake. We also sailed little Abaco
sailing dinghies on our honeymoon in the Bahamas.
Then I moved to St. Louis, where
there really isn’t much sailing. However, sailing always sat in the back of my
mind. When I retired to Florida, the call of the sails got more insistent. I
would go to the St. Petersburg Pier, buy some lunch and watch the sailboats,
thinking, “If only …”
Finally I one day I had my chance.
Some friends invited me join them at “Fun Day” at Boca Ciega Yacht Club (BCYC).
A short ride on someone’s sailboat was included, and I signed up for that. Then I found out that BCYC had a sail
school, and that after sail school you could sail the club’s little 16.5’
Catalinas! Well, that was enough for me. I joined, and I took sail school.
Didn’t work out so well (you should
know what’s coming by now). Those boats have low benches, and it takes both leg
strength and leg coordination to move from one side to the other at the right
time. You have to do that to sail them (unless you just kneel in the middle and
lean from side to side, but I hadn’t figured that out yet). The little
Catalinas weren’t the boat for me: I tried to change sides while tacking, and
(wait for it!) – I fell. Right in the middle of the boat. On my ass. Of course.
However, I also sailed on other
people’s boats, and discovered something wonderfully freeing for me: all those
upper body muscles I had built up while compensating for my weak legs were
tremendously helpful on a slightly larger sailboat. All I needed was higher
benches and I didn’t fall! Not ever. I can easily and confidently compensate
for slightly funky legs on a decent-sized sailboat. The rock-climbing skills
turned out to be crucial for me when sailing. It’s how I move around a boat
safely when the water is rough: three points secure; one point moving.
My inner athlete is finally
completely free, using all four limbs. I move around my boat safely and with
ease. I’ve figured out how to do it, just as I figured out how to walk normally
when I was 12. I’m not completely reckless, though. My lifelines are completely
netted, and if I have to go forward in rough water, I crawl. It works. It
thrills me so much that I lived on my sailboat for 3 ½ years, enjoying what it
took to move around the boat. My legs are stronger than they were 20 years ago.
Some people will think my parents
were terribly wrong not to tell me, or others, about the CP, not to get me
physical therapy, not to “deal” with it proactively, but I’m not so sure they
got this one wrong. I can’t imagine that a physical therapist of the 1950’s
would have said, “Let’s figure out how you can go hurtling downhill at 20 mph,
on a slippery surface, and trees to miss, with a couple of boards strapped to
your unstable legs! It’ll be fun! Then you can jump off a cliff with a rope
around your waist. You can climb right back up that cliff and hope your legs
don’t give out before you get to the top! You can crawl into a cave, and maybe
you’ll even be able to get out! Think of the possibilities!”
No. I think from an early age I
would have gotten a lot of subtle or not-so-subtle messages about what I
“could” and “could not” do. Given the beliefs of the time, probably there would
have been some suspicions that I wasn’t really very bright, too. And, I would
have listened. I listen.
Frankly, I’ve never seen another
person with CP who walks as normally as I do (of course, maybe I just don’t
know). Figuring out how to compensate on my own has been powerful and
transformative, and helped create the person I am now. Because I worked through
CP “the hard way,” and learned to compensate in so many ways, I learned the
value of tenacity at an early age. Not knowing I wasn’t supposed be able to do
some things, I worked out creative solutions that have accumulated over the years,
resulting in my ability to do this wonderful, freeing, athletic thing, this
sailing. I knew when I started sailing that I would find solutions to any
temporary obstacles I faced, because I’d done it many times before. As I sat on
my behind in the little Catalina I laughed, because I knew what the problem
was, and I knew there was a solution if I hunted for it.
In spite of all my efforts, there
are a few limitations. In addition to avoiding low benches, I don’t sail on
boats that have skinny or absent “cat walks” – the flat ledge of the deck along
the side of a boat you that you can walk on to move up to the bow. And, I don’t
race. In racing, everything has to be done fast. If you’re sitting on the rail
to help heel the boat, you have to be able to get up quickly, but for me it’s a
rock-climbing task. You might have to get up to the bow quickly, and in the
thrill of the moment, I might get careless. With my center of gravity above the
lifelines I could easily topple into the water. I always wear shoes (no padding
on the bottom of my feet; walking barefoot is painful for me).
I always move in a planned way, and
often not the way others move on a boat. That’s scary to some people. I often
use those rock-climbing skills to get around the boat. No, it doesn’t always
look graceful, and it’s not fast enough for racing, but it’s extremely safe. I
have alternative approaches just for getting on and off a boat, and I need for
people to accept that, and not try to help, because I know how my body works.
None of this is a big deal, though. After six years of intensive sailing, it’s
second nature to me unless I have to explain it to someone else.
Stephen Hawking once said, “However difficult life may seem, there is always
something you can do and succeed at.” If you have some physical
limitation but want to be active, look at what your body can do, and try to
imagine what those moves can do for you. Work with an occupational therapist
(therapy is much more empowering now than it was when I was a child). Research
online and see if there are programs for what you want to do. We’ve seen
double-amputee champion runners, and wheelchair basketball is a lively game
full of all the drama present in any other game of basketball. Find your
passion, and then search for a path to it. You may surprise yourself.
