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Shunryu Suzuki-Roshi

Reflections On a Life Lived Without All of My Limbs

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I was born without my entire right arm.  I have an elbow and about 4 inches of arm below that and– have lived on this earth for very close to 60 years. This means that I have A LOT of experience seeing what life is like in a world where people are supposed to show up with two full arms and for the most part keep them that way. Navigating the world in this condition has been challenging.

As an infant and toddler I was loved and cared for, but on an awareness level I soon learned that people didn’t always know how to relate to me and my arm. My growing up years were full of incidents that were born out of another’s attempts to come to grips with their own reaction to seeing me without all of my bodily parts. On top of that, on a purely physical level, the world is indeed set up for two handed people.

As I explored my big, wide world, I kept getting input that something was wrong with me. This information came wrapped both in the kind attempts of others to convince me that I was alright (when I hadn’t asked), or unvarnished efforts of others to make sure I knew that I wasn’t. I very often brought out the best and the worst in people, just by showing up. While there were many other factors that played into the shaping of my personality, this dynamic played a prominent role.

One example of experiencing the worst came when I was in elementary school, in about the 3rd or 4th grade. I attended a neighborhood school and lived right across the street. My block was just packed full of families.  Every day, children and more children poured out of their houses and played in their yards. Parents came out and sat on their porches to visit each other and watch over us in our various activities. Just in front of the row of houses where I lived, there was a community green space. Kids got up games of handball and softball, others played make believe with elaborate story lines--girls got out their Barbie dolls and boys got out their baseball cards. Teenagers got out their transistor radios and gyrated to the latest hit of the 1960’s.  We played in every way we could think of. I used to get a handful of nickels and hide them all around the field and then organize kids to search and find them. This was my world and I loved it!

One day a girl in my class named June, who I didn’t know very well, approached me at school and asked me if I would come home with her.  She lived about a half a mile away and I was thrilled to be asked to go to her house! As we walked, my mind was just swimming to see what kind of games the kids in her neighborhood played! June kept walking faster and faster and I thought she was excited to get home and have some after school fun. We approached her house and she burst through the back door with me in tow. Suddenly, I found myself in a strange kitchen with a group of strange grown-ups sitting around a table.  Everyone fell silent, June put her hand on her hip, pointed at my arm and said “SEE, I TOLD YOU SO!” and strutted out of the room. I was humiliated! In an instant I saw that I had been duped into being a circus side show. On top of that, my heart caved in that June didn’t really want to play with me. In that moment I was very, very alone. My insides froze; I dropped my head and shot out of the house. That afternoon an 8 year old had a lonely walk home with a very heavy heart.  Once at home I went to my room and crawled under my bed where I stayed until I could shut out the experience.

In Junior High (that’s what they called it back then), I started wearing a mechanical artificial arm, mainly so I could wear dresses and blouses and coats with long sleeves. As a teenager, I had discovered the world of fashion and every day I wanted to dress to dazzle. My artificial arm had a molded, rubber cosmetic glove that was supposed to look like a real hand (it didn’t). One day I somehow tore the glove on the index finger so I put a Band-Aid on it. While I thought this was clever, it triggered an enormous amount of taunting from other students when we passed in the halls. It stung when I realized that kids must have been passing the word that “Sally put a band aid on her plastic arm”. I pretended like I didn’t care but I stopped wearing the arm. Then people were asking me “Where is your arm?” I pretended like I didn’t care about that either.

On another occasion, this time in high school, I got on a Baltimore city bus to get home from school. The bus was full and packed with a hoard of noisy kids in the back. Someone started taunting me and pretty soon all the kids on the whole bus were making fun of me and my arm. I held my head high, and in a very poised fashion, waited until my stop and politely got off. I walked home to my yard and laid down in the shade of a giant tree and fell asleep. I don’t really remember feeling very much on that one.

Not all of life was humiliating like this.  In these same growing up years, I had a supportive family unit and many friends. I was also lucky enough to be a treasured member of my treasured neighborhood church and attended a wonderful summer camp for many years. I was successful in school. Through school trips and with friends, I traveled around the country and by the time I left high school had traveled outside of the country twice. Through these groups and activities, I got educated, learned about the world and shared great affinity with many people. I very often was the recipient of a great amount of spontaneous giving.

As a very young child, I remember moving to a new neighborhood in Baltimore.  I was pretty small.  One day when I was exploring past my own block, taking in the wonder of my new world, I saw a group of bigger kids coming my way. I was both fearless and always curious about everything and everyone new, so I walked right up to them and introduced my tiny self. In an instant, they swooped me up and took turns carrying me all around the neighborhood on their shoulders. It was like a parade and I was the float queen!  After my tour, they took me back to the spot where they found me, gently put me down and waved good bye. As I walked back to my house, I was pretty sure I was going to like this neighborhood.

Not very far away from my house there was an open field that had a stream running through it. On the other side of the stream there was a grassy park that had big shady trees, some sandy areas and even a few picnic tables. One time my mother took my sisters and me to a picnic in this park. We went with another neighborhood family and spent the whole day playing with abandon in the sun and the sand and eating picnic food at a table under the shade of a giant tree. That spot was a little too far for me to go by myself without permission so it was very special for me to be there. 

A few summers later, when I was allowed to go that far without an older person, a most exciting thing happened! A carnival came to town and set up in the open field across the stream! Within a day or two, this open field was transformed into a wonderland, with rides and games and popcorn and cotton candy-all with a recorded calliope in the background! The booths and rides were strung with lights and when the sun went down it was like nothing I had ever seen! I wandered around for hours, just mesmerized. I was particularly taken with the Ferris Wheel. It looked like an adventure to go up so high, but safe because it didn’t throw its passengers around like some of the other rides. So a skinny, probably barefoot, little, one armed girl with long hair and no money just stood near the ride operator and watched the wheel go around for about an eternity. I watched people get on and get off and on and off, until finally the operator opened a seat and signaled for me to climb aboard. In a daze of not believing my fortune, I scrambled up and got buckled in. I went around and around for many more times than a ticket would have allowed. The Ferris Wheel even stopped with me at the top and I just knew I saw the whole wide world from there! Later, when I was leaving the Carnival grounds, someone, a passerby, gave me a stuffed animal. As I tucked that blue and pink stuffed dog under my arm and headed out, it just didn’t seem to me that life could get any better.

And so my growing up years passed, showing me the inspiration and the pain that can come out of human relationships. While this is probably true for everyone, I think growing up without all of my right arm and no right hand, brought this process to a much sharper focus, much sooner in life. Years later, after many hills and valleys, I actually came to see this as a great gift to me.

In the decades after high school, I earned a BA in Psychology and an M. Ed. I successfully worked at many different jobs in the human services field. I was the Director of a day program for retarded adults (in those days that nomenclature was not considered improper), a Program Manager for a company that produced training programs in personal effectiveness, a Contract Fund raiser for several nonprofit agencies, a Major Gifts Development Officer for a Health Sciences Center, and more.

In all my jobs, in all of the settings, I learned how to make me and my work the focus and not my arm, even though that was often the first thing people saw. I unconsciously learned how to dress, hold my body and conduct my activities so that my arm wasn’t that noticeable. I put very little energy into explaining it or even talking about it with people. I would go as far as to say that I ignored it and for periods, even pretended it wasn’t there. I did this in hopes that other people would too. This got me through a lot.

I remember one summer while I was working at a summer camp for disabled adults, on the Evening Program staff; I was developing and directing a comedic version of Shakespeare’s Macbeth. The play was rewritten and adapted for its disabled cast and audience. It was wildly fun, had a great amount of participation and was very well received. While developing this production, working diligently in the background, I can remember very privately trying to imagine myself as an actor, on stage in this or any production. With all of my audacity, I couldn’t imagine me doing this, even in that safe environment. At that time, I was used to ignoring my missing arm and hand and I knew that I if I put myself on stage like that, I just couldn’t hide it from myself and others (who knew it anyway!). I stayed behind the scenes on that one.

One of the hardest and yet most rewarding and best parts of my whole life has been having and raising and being friends with my son, Jacob.  He was born in August of 1988 while I was living in a very rural area of Colorado. I was in a marriage that wasn’t working, trying to adjust to what seemed like a foreign lifestyle, and managing several different, demanding projects. In the midst of all of this, Jacob was born. He was a beautiful baby, healthy and well and missing his left hand. While I was taken with what a beautiful child I had, I often sharply felt the imprint of my own life journey with my arm. The day would come when Jacob would look at his arm and know he didn’t have a hand and I wanted to be ready.

I thought I’d better get awfully honest with myself about my own arm so I could give Jacob guidance that was worth having. As it turned out, he has done beautifully. He has met and embraced every challenge that life has thrown his way and I have to admit that he has thrown a few challenges back. Today, 25 years later, Jacob is an actor and an employed actor at that! As I write this, he is finishing up a 9 month tour with a company that has been taking three shows, one of which is Macbeth, to venues all around the country. Jacob plays Macbeth.

A very important transition that I made in my own life, maybe one of the MOST important, happened in Denver, Colorado sometime around the new millennium. Jacobs’s father and I had just separated and were heading for certain divorce. Jacob and I were living in Denver, in our family home. I was trying to keep his life as unified and moving forward as much as possible, while keeping up with a very demanding job and trying to handle our 5 bedroom house and yard.

Early, one dew drenched Saturday morning, I got up and was resolved to use the weekend to get my house in order. I had an appointment with a technician from a tree service who was sending someone out to give me an estimate on some work in my yard. While we were outside, I heard my phone ring. I ran in the back door, stepped onto the quarry tile floor and slid for my life! I hit the floor smack on the elbow of my shortened arm. I have to tell you that this was the worst pain I have ever experienced in my entire life! I saw stars. I sat on the floor, sick in the stomach, weak, cradling my elbow in my hand and cried. And cried. Jacob stood helplessly by and asked me what to do. I told him to call his father to come stay with him while I went to the hospital.

As it turned out, the three of us went to the hospital together and the adventures of a new life for me began.

My elbow was shattered. The doctors who studied the x rays said I now had a “bag of bones” and asked if there were any x rays of my elbow before the break. There weren’t. They assured me that they would do their best, and if nothing else would give me an elbow replacement. Now my most guarded limb, my most protected part, the one I worked so hard to keep people from seeing was the focus of attention. Doctors and technicians looked at it, took x rays, put it in a sling, and then put a cast on it. I was trying to pretend I wasn’t there but had to give that up because the body part meant so much to me.

I had to walk around for some time with a cast and a sling on my arm. It swelled a lot so I often had to put ice bags on it.  Aside from coping with all of the pain and impaired function, I couldn’t hide my arm anymore. Now when people on the street saw me, they often assumed I had an amputation and had a whole range of reactions to that!

I decided against getting an elbow replacement and after the cast came off I threw myself into physical therapy.  It seemed like all of the life was gone from my arm.  It was skinny, stuck in a 90 degree angle and stiff as a board. The therapist measured the angle of my elbow and showed me how to exercise my arm, trying to get even the smallest movement.  When my insurance company stopped paying for physical therapy I still couldn’t move my elbow. I was unable to accept this, but saw no more help coming from this corner.

I found out that I love this body part of mine, every bit as much as I love myself and I was not willing to give up on it.  I searched and found alternative healers who did energy work on my arm and showed me how to do meditations with guided imagery.  I worked tirelessly on this.  Every day for about a year, I did deep meditations, sending love to this limb.  I combined this with some of the exercises I learned in PT and exercised my arm every day. It got stronger and I started developing a range of motion and regaining function.

After about two years of intensive work, I got my arm back, very close to where it was before I fell. I do not (yet!) have the full range of motion that I had, but I have a lot and my arm is strong again.  I do everything I did before.

As a result of all of the inner work I did through deep meditation, I came to feel and see myself from a different perspective. I came to know myself as the being that I am, not the body. While I have a body, it is not who I am.  I now know that who I really am is whole and complete, with nothing left out. The physical aspects of my life are just that, physical. Window dressing. This shifted my perspective in many ways. I haven’t wanted to ignore my arm or concern myself very much with what other people are thinking since.

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