My name is John Isaacs. I am 59 years old. At the age of 16 I was in an automobile accident that resulted in a spinal cord injury – c6 fraction dislocation. I feel I am luckier then most people that incur the same injury. I recovered to an incomplete quad and for many years was able to get around with wearing a short leg brace on my left leg and walking with a cane. I have a spastic body from the chest down. When I reached my fifties I had to be fitted for a long leg brace and hop around with a walker and use a scooter for distance. I have always had a fierce determination and a will to accomplice. I went to college and earned a BA degree with a major in accounting. I recently retired from the State of New Jersey, Division of Taxation where I worked as a corpoation business tax auditor for twenty-five years. I recently had my book, Myths, Legends, History & Me…101 Poems, released. Samples of my work can be found at http://www.101tales.com. I have always accepted my disability for what it is and moved forward. The world is not about anyone person. All of us is a part of existence and have a part to play. I have been given the gift of going outside of myself and seeing things for what they are. I have never thought to much about my limitations, I have just moved forward. A lot slower then an able person; but I’ve gotten there. I believe disability is in the mind, not the body.

I am a survivor of childhood physical and sexual abuse suffered in three of my foster home placements. As a result, I suffered depression at a very young age and I tried to commit suicide when I was eight years old.

I began using drugs as a teenager and became homeless years later not knowing or even realizing that I had a mental illness and a drug addiction. I’ve been in jail many times, but the two years I spent in a state prison opened my eyes to the truth about myself. I didn’t like what my future would turn out to be if I continued on the same path of self-destruction.

After I got out of prison, I was already diagnosed with anxiety/panic disorder, anxiety/panic disorder and post traumatic stress disorder from life changing incidences and tragedies that occurred during my life. I looked back and realized that I had been in foster homes for 15 years, homeless for 10 years and addicted to drugs for more than 25 years. However, with the help of my peers, family and friends, as well as my mental health providers, I have been drug-free for almost 9 years.

I attended and graduated from the Howie T. Harp Peer Advocacy Center in Harlem, New York as a Certified Forensic Peer Specialist working to change the lives of my peers as I continue to better my own life. I’m an advocate and a speaker about recovery and change, and I’ve done many presentations across the country on the issues and successes that impact our lives. I’m involved with many organizations and agencies such as volunteering for NAMI-NY Metro, a Technical Assistance Advisor for the Policy Research Associates, and a Steering Committee Member for National Association of State Mental Health Program Directors, National Latino Behavioral Health Association, American College of Mental Health Association, and newly appointed Legislative Co-Chair for the New York City Peer Network Group.

I’ve also been given the greatest honor of having received in Paramount Studios the 2008 Consumer Leadership Voice Award for my work in the mental health community. I’m very proud to be the first one to receive this award representing the State of New York and the first Hispanic/Latino in the country.

Currently, I’m working as a Critical Time Intervention (CTI) Specialist at Columbia Presbyterian Hospital in Manhattan. As a Certified Forensic Peer Specialist, I worked for two years as a Peer Specialist for the Bronx TASC Jail Diversion Program, one year as a Peer Counselor in the Forensic Psychiatric Unit at Bellevue Hospital, one year as a Peer Advocate for the Bronx Peer Advocacy Center-Baltic Street, and a short while as a Case Manager/Peer Specialist for Pathways To Housing. Without the Forensic Peer Specialist training, I would not have gotten this far in my career and not have been able to spread the message of hope to all of my peers and friends.

I am single with no children. I live in Jamaica, New York. Didn’t graduate High School, but I obtained my General Equivalency Diploma. I like listening to music, watching movies, making a documentary film about our recovery, playing baseball and handball, and perhaps run in this year’s New York Marathon.

My life has been so much better since I kept taking my medications regularly, continuously attend weekly individual and group sessions, have regular visits with my doctor, meet my family, friends and peers as much as possible.

The one most important thing I would like people to change their thinking about mental illness is stigma. Stigma has a devastating and destructive effect against people living with mental illness. But the worse type of stigma is self-stigma. We must educate our peers to overcome their own stigma so they can move on with their lives and live happier. We must also educate our community, schools, and society.

The most helpful way for me to cope with my mental health problems was in using my support networks which are my peers, family, friends and mental health providers. Most importantly, it helps more with my support networks when I believe in myself and never lose hope.

There are many like myself that are unrecognized and have not been rewarded for their work in recovery. My story and the Voice Award also belong to all of my peers and friends because everyday we are living proof that recovery is possible for us and for everyone.

Herminio Maldonado
147-68 Village Road
Apt. 91-D
Jamaica, NY 11435
(71 380-8428
hmaldonado2003@yahoo.com / peersunited@yahoo.com

When I was three years old I was ran over by a hay wagon. I have to hip in my left side I am not suppose to walk. i have been arrested for not understanding my disabilities. I was on services I got kicked off because I am functional. I was told that I was not to fight or appeal there decision because I am not going to win. well I did not let them put fear into me. people told me not do things because I could not do them. I was called crippled and retarded. I took the negative and dealt with negative. I had to deal with depression alot of stuff that comes with brain injury tbi. I have been on Utah Developmental Disabilities council and vice chair and Chair of the council. I have been People first chair of conference and I wrote my book about my life and I am on sabe board. I go around speaking public speaker and I started my own business. I have learned to use supports to help me.

This is the story about my son Joey.  It all started when I met his dad Joe.  We had the same friends and the same people working with us and we fell in love. We went to Las Vegas with friends and we spent time together.  So much time together, that I got pregnant.  I felt something was wrong when I went over to my girls friend house. Then I told the person who works with us.  I went to the doctor and she told me that I was pregnant.  I talked to Joey’s dad.  We were happy and scared at the same time.  How do we tell our parents?  Will they be mad?  I was in a program where I can choose the people I work with.  One was a lady who helped me learn how to eat right and she gave me massages that were good for someone who is pregnant.  I exercised by walking.  I was pregnant during the summer, and when it got hot I walked in the pool, and other places.  I started a circle of support.  My mom and grandma and other people were part of the circle.  The circle was missing one thing, which was hospital support.  When I went into labor, I had to go to Joe’s dad’s house because I had no heat at my house.      When my labor started, Joey pooped when he started to come out.  It confused me, so we called the nurse at the hospital and she told me to come to Saint Anthony’s immediately.  Once we were there, the doctors and nurses only saw two people with disabilities.  They thought that we would not be able to take care of our baby.  Our baby boy was born on January 13, 1997 at 10:00AM by caesarian section.  We had a girl’s name picked out which was Carrie Deborah.   For a boy, we picked the name Joseph after his dad (which also happened to be the name for the caption of the Colorado pro hockey team – Joe Sakic).  Joey’s middle name is Christopher, named after Chris Drury (a former member of the Colorado pro hockey team).  Drury is now with the New York Rangers.  Joey’s dad and I were happy. 

Then the hospital called social services and told them that I had hit my son, which never happened.  The hospital placed Joey under police protection and wouldn’t let me near him.  We got a lawyer to represent us who was from the ARC of Colorado.  She helped me to get Joey home safe.  So goes the life with social services.  Joey’s dad and I were happy and nervous at the same time.  My mom and my sister stayed at my apartment for over a week when I first brought Joey home.  I had a nurse come to the house to check on Joey and me because I was too afraid to return to the hospital with Joey after what had happened.  The nurse who came over did Joey’s first check up. 

      Joey, his father, and I did a lot of things together like Gymboree, music class, and baby massage.  When Joey was a baby, he liked trucks, Miss Piggy, Walt Disney movies, and music.  When Joey was very young, his dad and me would tease him about Miss Piggy being his girlfriend, which made Joey laugh. 

      About this time, Joe and I talked about getting married.  We went to the Catholic Church and got the required questionnaire to fill out.  We filled out the paperwork and returned it to the church.  Our next step was marriage counseling which didn’t go so well.  After four or five sessions of counseling at my apartment, the situation became abusive and we mutually broke up.  Our attempt to get married didn’t work out quite the way we planned.  

      Joey began living with his Auntie (Joe’s Aunt) when he was just over one year old.  As the ongoing court situation continued, the judge listened to my side of the story and social services side of the story and decided that Joey could not live with me.  For almost one year, I hardly saw my son at all.  During that time, Mount Saint Vincent got involved and helped me to see Joey a few times.  When he was around two years old, I had two friends who helped me see my son.  They would pick up Joey and bring him to their house so that I could see Joey at their house.  This didn’t last long, because Joe’s aunt got involved and stopped me again from seeing Joey.  I was hurt and mad and tired of everyone else running my life and keeping me from doing what I wanted and needed to do regarding my son. 

Not long after this, Denver Options became involved and helped me to get some visitation time with Joey.  Denver Options helped me petition the court so that I could see my son again.  The court ordered that I could see Joey two times per week under supervision on Wednesday night and Saturday morning every week.  I was happy to have the time with my son, but still angry that our time had to be supervised.  Again, I was being told what I could do but more importantly, what I couldn’t do.  This court order was in place for over nine years. 

During this supervised time, I tried to get Denver Options to help me get more time with my son as well as unsupervised time.  Because Denver Options couldn’t help, I began talking with the powers that be and I learned about an agency called Hope Initiative.  This new agency had some good ideas and a good program and I trusted the people there.  In time, Hope Initiative helped me build up a case to bring before the judge so that I could see Joey on my own.  Late last year, the court reviewed my case and decided that I could see my son with no supervision, but the two days per week is still the same.  

I continue working with Hope Initiative.  The ARC originally created them.  The program helps disabled moms by teaching us to be better parents and more independent.  Jolene from Hope Initiative works with Joey and me and helps me build my parenting skills.  She meets with us on Wednesday nights.  She does a home visit and we talk about ways that I can do a better job with Joey. 

Joey is now 11 years old and goes to a private school.  He has problems in Reading and Math.  He likes gym and science.  He has some friends.  He is actually going on his first date to a Valentine’s dance and he is really nervous.  He likes model trains, real trains and sports like Baseball, Soccer, Karate, Football, and Basketball.  He likes to watch the Rockies play baseball and the Avalanche play hockey. He loves his dog Sheila and his hamster Yoda. 

Joey’s dad is in his life when he wants to be.  It really doesn’t matter what Joey wants, or when Joey wants to see him; he is part of Joey’s life when it is convenient for him.  Sometimes when they are together, they go fishing, to the racetrack, or to a baseball game.  When Joey talks to me about his dad, he asks me to call him and ask when they can get together.  Because I am angry with Joey’s father and I don’t want to fight with him, I tell Joey that he needs to ask his grandmother or aunt to call his father.

Joey has a strong bond with me. He asks me why he can’t see me when our time together gets canceled for a variety of reasons such as transportation, weather, illness, etc.   Joey and I go places with Jolene like the Butterfly Pavilion, Denver Museum of Natural History, out to eat at restaurants like Applebee’s, picnics in the park, and movies.  We talk about things like sports, girls, friends, family, and his world.  He sometimes comes to my church with me for special events.  I have gone to many school activates and to train club.  Joey comes to my house once a month.  When he comes over, he and I have fun doing science experiments, cooking, playing games, or having a holiday party.  Sometimes we call his grandparents and fill them in on what he has been doing or wish them a happy birthday or happy holidays.

It is my hope that in the future, there will be no restrictions, rules, court orders, or anyone telling me how my relationship with my son has to be.  I also hope to have a better relationship with Barbara (Joey’s Aunt) as she is the one with sole custody of Joey.  I hope for a day when Barbara will see me only as Joey’s mother, and not a person with a disability.  Because he continues to live with her, it is important that I can talk to her about Joey whenever I want.  I want for Joey to be closer with my side of the family.  He hasn’t seen his cousins in ten years.  I know that if Joey’s Aunt Barbara viewed me differently, my relationship with my son would only grow stronger.  Joey is growing up very fast.  It won’t be long before he is an adult man and no one will be making any decisions about our relationship.  I believe that at that point, I will finally be truly living the self-determined life that I have been working towards for so many years.

New Plan for a life with MS

damaged pathways demand an altered approach

to my strangely uncertain existence

need to concentrate on ignoring the losses

focus on nature, beauty and life

work it moment by moment, metre by metre

and begin to embrace creative distraction

forgive myself the weakness of disease

strength can be harvested from the hearty weeds

of persistence, resilience, wonder and will

it can grow to encompass all thoughts

be directed, harnessed and healing

I will gain insight into this adaptability curve

master the issues, claim the moments

and know I am engaged with the energy

that still flows through my interrupted mind 

©Copyright 2007 by Michelle V. Alkerton

My daughter Mignon is 34 years old. She was an exceptional student and captained her sports teams at school, became Vice Head girl of her school and won the headmasters award. She then went to University and passed her degree majoring in Industrial psychology and Political Science.

At the age of 23 she decided that she wanted to be the first women to cross Africa on a horse on the 30 degree parallel. This involved crossing through big five territory (Lion, Elephant, Buffalo, Leopard, and Cheetah)

We as parents were frantic with worry and noticed that the planning was not properly done. She was not thinking things through. Nothing would stop her from doing this expedition. Something was wrong but we put it to being young. She raised all the funding for the trip herself with no assistance. She approached a charity called Reach for a Dream which enables terminal children to make a wish and all the proceeds went to this charity. The trip was hell. Lions chased her on the horse, she got lost in the desert but she just would not give up.

Her father and I flew up to Botswana to look for her and found her in the middle of the African bush. She looked depressed and not really in touch with things. We begged her to return and finish the trip at a later stage, but she refused and after many months finished what she started.

When she returned we sent her to a doctor who told us that there was nothing wrong with her and the problem was with us as her parents.

The years went on and our relationship with her became dysfunctional. I just could not understand what was going on with her and started to think that she was involved with drugs.

What was so sad is that I judged her and presumed she was on drugs. She started drinking excessively and this made me even more disappointed in her. I never really listened to her as I thought that I knew what was wrong. Mental illness was something I chose not to accept. My child was just too clever to have any form of mental problems. How ignorant I was and how much damage I caused this innocent girl.

At age 32 she went into a psychosis and she was diagnosed. Once I understood what was going on I realized that she could not help what was happening to her.

I prayed every day for God to forgive me and forgive her and give me the wisdom to deal with each day as it came.

We got our daughter back by putting her first, loving her and accepting that it is okay to have a disability. There is very little she can’t do that other people can do and we don’t use the term “normal” people because what is normal? Some people have diabetes is that normal?

Mignon has moved on in such a determined way and has moved into her own home a few months ago with much excitement and got a publishing job that involves hectic dead lines and is determined to control her disability and not let the disability control her. She wants to live a full healthy happy life, with a little bit of luck and lots and lots of family support I believe she will.

I love her and have a deep respect for her, because it takes courage to go through what she is going through.

May God be with all of the people in need and may the families get the wisdom to understand, because this love and understanding will make the task of living so much easier as they move forward in a wonderful positive direction.

Grateful Mom

Have you done something for a long time and realized that you wanted to do something else? Did this change happen overnight or did it take a while? This has happened to me and I am really happy that I made the change in my life.

For 18 years, I have attended the CP Rochester Center. I have learned a lot of great things there and really enjoyed working with the staff. While I was in AmeriCorps, I found out that public speaking was the thing I really like to do. When my term with AmeriCorps was up, I was able to volunteer two days a week with the help of Day Habilitation. I wished that I could volunteer everyday. During this time, I learned about self determination.

Six years ago, I started working on a self determination plan. Self determination is being able to tell Medicaid how I want to spend my money and time. It costs so much money to attend a program like the CP Center. With help and support from my service coordinator, some friends and my mother, we came up with a plan for me to get my own van and a personal assistant. This was a long process but on January 20, 2005, we found out that the plan was approved.

I got my van first. I had to go through the steps of signing the lease and getting the insurance. My van has a ramp that I go up and down to get in and out. I sit up right next to the driver. Having my own vehicle makes me feel as free as a butterfly because I can go everywhere in my electric wheelchair and be totally independent.

The next step was to find a personal assistant. LDA Learning and Lifetime Services is the fiscal intermediary for this project. This means that they help me pay my bills and manage my money. The head of human resources assisted me in putting an ad in the paper for the personal assistant. At the same time, I sent an email to my family and friends about my great news. One of my friends, Marie, wrote back to say that she was interested in the job. She used to work with me at the CP Rochester Center and knew the things that I would need help with. I set up an interview with Marie and I was happy with the results. So I hired her.

Marie comes everyday and accompanies me to the Self Advocacy Office and to presentations. She helps me with my volunteer work and makes sure that I get to all of my presentations. We work really well together and I am very happy. I have been busy doing children’ presentations and some staff trainings at the Developmental Disabilities Service Office.

I also have money for a residential habiltator and respite staff. I am in the process of hiring someone for both positions. The respite staff will come to stay with me when my mother wants to go out for a day or evening.

I miss everyone at the center but I get to see them on the days that I have therapy. Having Marie as my assistant and my van makes me feel so independent. I love the things that I am doing now. Making changes can be scary and take time but I found out that the process is worth everything!

Kaitlin’s story  by Marci J. Hall
November 01, 2007

Unlike most students, Kaitlin McCaffrey began preparing to enter the workforce the day she started the seventh grade.

As soon as Kaitlin became a seventh grader, she and her parents, along with the team members, began planning for her high school education, said Kimberlee Scarponi, a special education teacher in Greenland. The team began discussing this transition before Christmas of the previous year. By January, Kaitlin began monthly visitations to Portsmouth High School, accompanied by her full-time aide by the time Kaitlin attended the mandatory, initiation for all incoming freshmen in August, she was completely familiar with the school and staff and they, her.

In addition to preparing Kaitlin for the physical relocation, her support team including her parents, educators, school nurse, therapists and other school representatives sat down to create a person-centered plan, which ultimately became an individualized educational plan (IEP) to begin her vocational journey.

I’m a huge fan of Kaitlin’s, as is anyone who has ever met her, said Patrick O’Keefe, owner of La Famiglia. Her presence makes us all better people and she is a big part of what we do here.

Her family said they couldn’t be happier with Kaitlin’s education and the successes she has achieved. If he could give one piece of advice to other parents in a similar situation, Bob said, Plan, plan, plan. Plan way in advance, don’t wait, he adds. Know your rights and make sure that you have all the perspective parties for all the benchmark years at meetings at least two years prior. Kaitlin is self-determining in her life with a plan of her wants and needs and the support of the people who know her best.

(AXIS Dance Company dancers Sonsheree Giles and Judith Smith. Photo by Trib LaPrade.)
I’ve been disabled for thirty years and can say that I’ve managed to have a very good life–better than I imagined I might after I became a c-6 quad in 1977 at age 17. The first 10 years were really difficult. My mother died, I had to move to the city after growing up in a small mountain town in CO and I had no idea what I was going to do with my life. But, I managed to have several key people come into my life who helped me find my way. Through twists and turns, I ended up in Berkeley, CA in 1983. In 1987, I became a founding member of AXIS Dance Company and became the Artistic Director in 1997.

Dancing is actually the last thing I ever imagined I would be doing. As a child and teenager , my passion was horses. I grew up riding through the Colorado mountains and competing on the horseshow circuit in hunter/jumper classes. At age 17, I was in a car accident which drastically altered the course of my life. I spent the next several years sitting very still, being an alien in my own body, and trying to figure out what in the world I was going to do with the remainder of my time on the planet. Through various twists and turns in my life, I ended up in Berkeley, the mecca for people with disabilities. I met a woman, Gail Pacifica, who was very interested in dance and movement. We began doing movement improvisation on the floor for fun. A whole new world began to open up for me as I learned for the first time since becoming disabled how much I really could move! This led me into swimming, weightlifting and eventually to the martial arts where I met Thais Mazur in a kajukenbo kung fu class. Thais and some other people, disabled and not, were creating a dance piece based on the story of a young dancer who becomes disabled but begins to dance and perform again– in a wheelchair. Even though I knew nothing about dance, I agreed to join the project.

This was the beginning of AXIS Dance Company. We performed the piece at a local dance festival, receiving a standing ovation. We weren’t sure whether the ovation was for our dance or because some of us were disabled. Immediately, there were requests for our performances and we realized there was something very socially and politically significant and potent about what we were doing–creating dance that was the result of people with and without disabilities collaborating as equals. Since we knew of no other dance companies doing this kind of work, we had to start from scratch. We began developing our own movement vocabulary using Thais’ and other AXIS dancers’ skills in contact improvisation and modern dance. Now, almost ten years later, we know of many other dancers around the world who are also developing and pioneering this new genre of dance. We have performed and taught locally, nationally and internationally as far away as Siberia in a wide variety of venues and situations.

I certainly didn’t know that an outrageous idea to create a dance with people in wheelchairs and people on feet would go so far. What I value most about dance is the freedom it’s given me to explore who I am, to be creative with my mind and my body and to move in ways in and out of my chair that I never imagined. Dance also brought discipline, focus and direction back into my life. I love doing things that are unusual and push the boundaries of what most people think possible. Performing, teaching and presenting the work that I’ve been part of creating with a group of incredibly wonderful and talented individuals has been most rewarding and challenging. I see my dance as a way to give something back, to challenge people to always question our assumptions and to keep our minds open to the endless possibilities and potentials inherent in us all.

Through AXIS, I’ve had the opportunity to do something with my life that I feel is socially relevant. I met Iva Walton, my partner of 12 years backstage at a dance festival. We own a home in Oakland that we share with a dog and numerous feral cats. I look back at my life and there are not many things I’d change. I’ve had the great good fortune of finding something to do with my life that is endlessly challenging, inspiring, creative and rewarding. Being surrounded daily by passionate, committed and talented artists, not too mention some of the brilliant minds of our time makes for a great life actually. You can learm nore about AXIS at axisdance.org.

Judith Smith, Artistic Director
AXIS Dance Company
Oakland, CA
judy@axisdance.org
Www.axisdance.org

NO LIMITS by Prof Ms Ketna L Mehta

“In spite of my repeated maneuverings the glider refused to obey. It was hurtling towards the ground.Heart pumping overtime, I thrust my right leg out, like we had been instructed to, to stall the downward rush, but failed. I hit the ground on my behind with a searing thud”

bracing mouthful of fresh air rushed into my lungs as the glider took off after a little coaxing and cajoling. “Its good to be alive, I thought to myself, as I manipulated the bird to the left where my pilot was waiting. It was the 12th of February, 1995, a Sunday, and the last day of a month-long paragliding camp in Virar (in Thane district).

I was an adrenaline junkie to the core! In between running my own firm – Ubique Consultants, which handled market research projects, I found time for adventure sports in and around Mumbai. In fact, my consultancy had organised such adventure sport packages — programmes aimed at enhancing team building spirit, decision making, and risk taking abilities—for middle level managers in the corporate sector. I myself had participated in these programmes where we went rappelling, white water rafting, and leap frogging over rock faces (an activity called ‘chimney crossing’).

But this was my first stab at paragliding: I had joined the camp at the insistence of a friend, Swapnali, an ardent outdoors person like me. It had been an exciting month, glorious hours spent soaring in the deep blue sky. Today, on our last day, we were attempting the Tandem gliding, where two people do a flight together. I am getting pretty good at this, I thought happily, as I floated.

ON A WING AND A PRAYER

It was an exceptionally breezy day. Our instructor had warned us that the flights may be called off if it got worse, but just before my turn came, the wind subsided a little so I took off.

Moments later all hell broke loose. The wind, which had dropped to a mere whisper, suddenly picked up while I was still in the air. In spite of my repeated maneuverings to the left, the glider refused to obey, and instead turned a whole 180° to the right! It was also hurtling towards the ground. Alarmed, I tried to press the brakes. I did not want to land on the bed of sharp pebbles that I could see in the distance, or get entangled in one of the many thorny trees that dotted the side of the hillock. But the strong gusts had made the mechanism useless. Heart pumping overtime, I thrust my right leg out, like we had been instructed to, to stall the downward rush, but failed. I was coming in too fast.

I hit the ground on my behind with a searing thud.

For a brief moment, my back and hips felt like they were on fire. Then, everything went totally numb below the waist; not a sensation to even indicate that I owned a pair of shapely legs, though my back continued to throb.

I groaned in near delirium, though I remained fully conscious throughout, while the other participants gathered around anxiously, tossing guesses as to what to do next. Blame it on ill luck or lack of foresight, but there was no doctor on the camp. Finally it was decided that I be transported to Virar where a medic could be found, though the chances of that seemed slight, it being a Sunday.

The ride to the town was excruciating even with numb legs. Fortunately an orthopedic surgeon, Dr. Riten Pradhan, agreed to have a look at me. He tapped me for broken bones and asked, “When did you last have water? Have you passed any urine since then?” after I had indicated the area from whereon there was no feeling. Gravely he continued. “Where do you live? Do you have any relatives, give me their numbers.” My alarm must have been evident even through the grimaces of pain because he gently explained. “We need to prepare you for immediate surgery. I suspect you have a spinal cord injury. That’s why you can’t feel your legs.” I promptly supplied him with Dhaval and Nina, my siblings’ numbers. Preliminary investigations over, he agreed to accompany me to the hospital, as the others were all total strangers to Mumbai.

I had been reduced to a complete automaton. All I could do was pray and wordlessly follow orders. Dhaval and Hemubhai, my brother-in-law (and a doctor), took charge when we reached Dadar and I was taken to the Hinduja hospital. Once there I was quickly wheeled into intensive care while Dr. Pradhan went in search of spinal surgeon, Dr. Shekhar Bhojraj, who luckily was in the hospital at the time preparing for a workshop.

After a careful examination and queries on how the accident came about, Dr. Bhojraj reiterated Dr. Pradhan’s diagnosis: I needed immediate surgery. Apparently, because of the fall, my spine had compressed in one place and bulged out at another. The bulge had caused’ a fracture in the Thoracic-12 region. The bone fragments in turn were pressing in on the nerves and cutting off the sensation carrying channels that post messages to the brain. That was why I could not feel anything. The doctors had to operate quickly to stabilise my spine. Plates were inserted in the area to prevent damage to more nerves. Dr. Bhojraj performed the operation the same night.

THE AFTERMATH

I woke up the next day to find my family fussing over me. “Good morning. Do the stitches hurt?” enquired Dr. Bhojraj solicitously. I smiled weakly in reply, and he continued, “You will have to lie prone for a while, till the wound heals and we can take out the stitches.” Just then my eyes went to a tube snaking out from under the covers. “That is a catheter. It will take some time before you regain any sensations down there; till then the catheter will do the job of draining out urine,” he said.

This was how my recovery was prognosticated, all in piecemeal terms: Have the stitches healed? I’ll have to start wearing a brace to support the injured back. Are my kidneys working fine?’ I was given the task of measuring my liquid intake and comparing it with the output. A physiotherapist would soon be assigned, I was told, to start working with me to try and recover some sensation in. my lower body.

The doctors kept me busy with these preoccupations and never actually discussed the ultimate repercussions of the accident.

It was left to Nina to break the news to me. A fortnight into my recovery, I was put on an intermittent catheter (an improvement from the permanent one) and I had soiled my bed sheets. One of the nurses who was changing me casually remarked, “Paraplegics ko to yeh sabse badi problem hain” My brain snapped to attention and I waited impatiently for Nina’s visit that evening. When she finally came, I related the nurses’ conversation. Knowing instantly that prevarication was useless, and I would not be content with anything other than the truth, she gave it to me straight on the line:

“Ketna, the doctors have diagnosed your condition as paraplegia. They say that the nerves below the fractured spot are either totally damaged or traumatised. Physiotherapy will help get back some of the sensations, but the extent of the damage is not known as yet.

“But I know you can prove the doctors wrong!” she hurried on. “Show them you will get back to what you were before the accident!” For a moment, I went blank. Paraplegic! Isn’t that the term used for people who are confined to wheelchairs…? What does that mean? That I will not be able to walk? I could not bring myself to accept this fearful thought, but seeing Nina’s anxiety and anguish at being the carrier of such sad tidings, I assured her, “Don’t you worry, Nina, as long as my brain is working, I will be fine.”

COMING TO TERMS

But after she had gone and I was left alone, I couldn’t delude myself with false cheer any longer, or pretend to feel positive when my primary emotion was one of devastation. What will I do? I thought miserably. I cast around for some solution. Maybe I can get back to painting. I loved to paint and make caricatures—the walls of my room in the hospital were plastered with my works of art, much to the nurses’ horror—but a busy professional life had left little time for pursuing such indulgences. I could help edit Nina’s homoeopathic journals (Nina was a trained homoeopath). That could become a full time occupation. Maybe things will not he so bad after all.

So what if I cannot do prestigious market research and liaisoning for corporates! Look at what Stephen Hawkins has achieved! Even a vague plan like this helped me get a good night’s sleep, ready as I was to clutch on straws.

Of course I was only thinking about occupations and careers, things to keep me busy. But life is far more than a job. And I could not even begin to comprehend all the challenges that would be in store for me. A brand new paraplegic not only has to struggle with the physical limitations but also attune her mind and psyche to accept and live with those limitations. Was I upto the task? Only time would tell.

I needed constant attention and resigned myself to being helped in and out of bed, shunted around: When a situation is beyond your control, it’s no good fretting about it, I told myself. How thankful I was for my practical bent! I was never the one for breeding about the whys and wherefores. I im- mersed myself in the task of making a presentation for CIDCO. Before the accident, Ubique had landed a coveted market research project from the company and I was anxious to get started. In fact, I was contemplating on making the presentation right there in the hospital conference room.

Fifteen days after the operation, the stitches came off, and I could now sit up wearing a brace. I was allowed to move around on a wheelchair, and Sharon Vakharia, the hospital physio, also started me on passive exercises for my thighs, where a little feeling had returned. She told me that she was trying to revitalize some of the dormant nerves so that they would begin functioning and help me to walk atleast with crutches. This was another ticket to freedom. She wheeled me around and introduced me to other paraplegics in the hospital, and I made a couple of good friends, Arlene D’Souza and Nitin Goyal. Some day we plan to go trekking in Kasauli (a getaway in Himachal Pradesh) crutches and all. I’m a great believer in the power of the mind. Willpower has helped some paraplegics climb the Himalayas, cross the oceans…

But I still had many miles to go before I got there.

HOMEWARD BOUND

Back home, the process of adjustments began anew. It was just a month after the accident and, in a sense, I was as good as a baby, needing assistance in every little task. The hospital had provided me with accouterments – a thick plastic brace to support my back while sitting or standing, calipers for the legs. But the first time I stood up with the help of these gadgets, it was almost like a free fall. I felt I was floating in mid air, and would fall down any moment.

Till then, the prospect of leading life in a wheelchair had been just a scary thought. I had not quite grasped how much those four wheels would change my life. Like most new paraplegics, I had been preoccupied with the larger issues of life: What will I do? What would happen to my career? and so forth. But it is the small stuff, the simple, day-to-day routine tasks that one does without thinking and now can’t, that frustrate you and thrust the fact of your physical limitations in your face, again and again.

I am the kind of person who would rather climb up the stairs than wait for a lift, or walk instead of waiting around for a bus. How could I bear living such a restricted life? I anguished. Sure, I had every kind of help imaginable. A full time maushi to bathe, feed, and dress me. An attentive family at my beck and call. But all this did not, could not, make up for the loss of independence that I had enjoyed up till then.

Perhaps it was this realisation that lit the fire of determination in my heart, to be on my own, to not let my disability hamper my lifestyle. So, where once I merely tolerated the physiotherapy. I now became an active and willing partner in the exercises.

Milka, a physio, took over from Sharon at home. Her strategy was two pronged —one, to strengthen my thighs so that they would support my weight.

And secondly, to develop my upper body, so that I can perform simple tasks like turning in the bed, sitting up, standing and balancing. Till then I had lain passive on the bed, using ropes tied to window bars, to turn on my side. At best, I would be propped up on the bed itself with the help of pillows. Sitting freely, getting off the bed, and moving even a few inches were totally out of question.

I was beginning to appreciate all the movements that our body does automatically, which I was now forcing mine to do.

Despite my new found enthusiasm, I found the exercises excruciating. Day after day, I would sweat it out, first using my own body weight as resistance, then, as my strength upped, with weights tied to my legs, my arms.

The doctors had warned me about incontinence, though I was never told that it would be lifelong. Now the ab exercises that I did were also aimed at controlling my bladder and bowel movements. But I had to be prepared for episodes of incontinence, embarrassing though they would be.

Fortunately for me, adult diapers had just come into the market, which I could wear while going out, so even if I leaked my outer clothes would not be soiled. Having two doctors at home helped too. Both Hemubhai and Nina explained the importance of clean catheterization. (In the hospital I had been taught how to use the tube on myself.) Hygiene was all important, because if I did not sterilize my catheter regularly, I could lay myself open for serious urinary tract infections. For the same reason, I have to be on Ditropan, a medication that nips UTIs in the bud, lifelong.

PATH TO FREEDOM

Four months into my rehab, signs of some life getting back in my legs emerged.

An adjustable but cumbersome walker with wheels was procured once I learned to put one foot in front of the other. But climbing up and down the stairs was still an absolute no-no, which kept me housebound because we lived on the first floor. I could only get out of the house if someone carried me back and forth. Till then Hemubhai had been carting me around, even doing an occasional jig around the landing to show off his “weight lifting” prowess. But personally, I was mortified each time I had to clamber on his back. C’mon, I must have weighed at least 55 kg!

One day I was telling Dr. Pradhan about this when an idea struck him: “Ketna, why don’t you adjust your walker for the stairs so that the front rungs stand lower than the back ones?”

Then you can balance the walker on the steps and hop down. Ask someone to stand at the foot to catch you, just in case. The simplicity of the idea enthused me. Why not, let’s try it, I thought. By now a very renowned physiotherapist, V.C. Jacob was also helping me with the exercises and making very good progress. So, the next day itself, as soon as Jacob came over, I put forward Dr. Pradhan’s idea to him and he agreed readily.

But the task was easier said than done. Because when the moment came, and I stood at the head of the stairs with the walker adjusted, and Dhaval waiting at the bottom ready to catch me, I lost my nerve! “I’ll fall,” I screeched. “No, you won’t,” Jacob and Dhaval assured me. “Yes, I will, and break my neck as well,”

I retorted morosely even as I gingerly tried a baby hop. Before I knew it, I was standing on the next step. A small spark of hope lit in my heart.

I continued, and the same day I had hopped down the entire flight before exhaustion forced me to stop.

Even then, it was a whole month before I could actually make it up and down the stairs on my own. In part this was due to the extreme pain that accompanied each step. To stabilise my legs. Jacob had ordered me to wear calipers which extended from mid- thigh to the foot. So I could not bend my knees and climb like everyone else: I had to swing my whole leg, place it on the step, then swing the other one around to join it. The effort had beads of sweat running down my face, and my knees suffered perpetual pain due to the hyper extension. Jacob explained that they were taking the entire load of the leg, and he taught me how to press down my knees while lying down to strengthen the quadriceps (front muscles of the thigh).

Learning how to take the stairs was, in a sense, the actual key to my freedom, For one, it indicated that my injury was partial (Jacob called it paraphrasis or partial paraplegia), and that some active nerves remained which could be worked upon. Secondly, it literally opened doors for me! After months of incarceration, where the only outing was a trip to the hospital and back, I could now contemplate an evening out with friends, even getting back to work. I was elated.

One of the first trips I made to celebrate the occasion was to go buy a gift for Dhaval. That was when I had my first taste of the tough world outside that makes no leeways for paraplegics. A close relative, Meera bhabi had driven me to the Breach Candy area and thoughtfully parked the car right outside the shop, when a policeman came up and started yelling, “Arre, turn kya karta hain? Dikhta nahin yeh no parking zone hain! Gaadi hatao”! I drew his attention to my walker and calipers and said “Bhaiya, tumko dikhta nahin ki hamaare ko problem hain? Dekho, hum road kaise cross karega?” That made him back off. I knew then that I would have to fight for my rights at every point.

MEMORABLE MILESTONES

Every day, I became a little more independent. From the confines of the bed I moved to the kitchen, where the only concession made for me was a small stool to rest on if I got tired.

Within a few months of the accident, I could whip up a dinner on my own for the whole family! The next hurdle was going out by myself, say; to visit friends. This meant climbing down the steps, hailing a taxi, all big tasks. I learnt to think positively. For every action, be it walking to the kitchen to fetch a glass of water, or to stand at the head of the stairs and jumping down, I noticed that the day I told myself I can’t do it, no matter how much I tried, I really couldn’t make the trip. But the days I thought I could, I would be able to. I had to believe in the power of the mind.

My family stood staunchly behind me, ready to help when I needed it, but at the same time ensuring that I did not get too dependent on them. “Go on, go take a cab,” Dhaval would say, “Why do you want someone to come with you? Ask the driver to help you inside when you need to get out, someone will be there to hand you the walker.” He kept encouraging me to make small trips outside the home on my own, till I lost my fears.

Work, thankfully had not slackened, otherwise I would have been devastated. A month before the accident, I had met a reputed management consultant G. Shanker, who ran his own firm in Chennai. One day, when I was barely a few days out of the hospital, I received a call from him saying that he wanted to meet me. I explained my situation to him, warning him that I would not be of much help, but he replied, “We’ll see about that. I’ll meet you tomorrow, when I land in Mumbai.” I was puzzled, but could make nothing of the conversation.

Promptly at 11 the next morning, Shanker arrived at my house and after some formal chit-chat, he began outlining a field research project which he wanted me to oversee in Mumbaiand Pune. He promised me a retainer, and said that I could hire all the research students and qualified researchers I required for the job. And I was back in action! It was as simple as that.

I had badly needed that mental stimulation. Using my faculties for something worthwhile, something creative, had always given me satisfaction, and I knew they would help me get through this tribulation too, even if I had to rely on crutches.

Throughout my rehab, I never said no to any assignment that came my way. I did typing jobs for non-profit making journals, edited articles for my sister’s homeopathic magazine, even helped people write their CVs.

The idea was to gainfully utilise my time. Jacob encouraged me to interact with the patients at the Paraplegic Centre, of which he himself is a consultant, and I derived immense satisfaction from teaching the inmates how to overcome small hurdles like catheterizing on one’s own. There is an inexplicable pleasure in helping someone out.

Slowly, through my own consultancy’s contacts, I began getting editing work from some journals. I started a magazine. One World – Voice of Paraplegics, that addresses the various issues that affect paraplegics. I had not forgotten my experience with the police. As a member of the Rotary Club, even today I take part in their access committee activities, which campaigns for buildings to be made accessible to the disabled. We have succeeded at several places including the Shanmukhananda Hall and most police stations in Mumbai.

This year, I surpassed my own expectations: I travelled all by myself to Thailand to attend a conference on empowerment of disabled women, on the invitation of Javed Abidi, director of Disabilities People International. It was a six-day trip for which I had to make several preparations including learning how to use a commode (at home I use a bedpan). I restricted my intake of water during the flight, and things went smoothly.

It was wonderful to see how understanding the hotel staff there were, of our special needs. Adequate arrangements, including wheel-chairs and ramps were laid out, and the housekeeping staff was always available to wheel us to the various venues. Compare that to the callousness you see here, in India, and you’ll realise what I’m trying to say!

PUSHING BACK THE LIMITS

It has been 8 years since my innocent adventure took such a horrifying turn. Expectedly, life has not been a cakewalk. It had taken awhile for the fact to sink in that I was no longer footloose and fancy free like before, that I cannot enjoy the luxury of impulsiveness and spontaneity like everyone else. I miss out on the incidental interactions, of meeting someone in the hallway to discuss an idea, of arguing over a concept in the canteen, the very stimuli that I used to derive from people around me. Having to rely on friends and family daily can also put a crimp on one’s lifestyle. But while there are many things that I can’t have, and several things that I can’t do, there are a million others that are within my scope. I may not be able to go trekking in my current situation, for example, but there are no limits to the cerebral adventures that I can experience! I’ve discovered a latent talent for writing that I plan to exploit.

Life is full of possibilities.

Of course you may rightly ask: What are my feelings toward adventure sports today? Have I been put off them completely? After all, they are the reason for my situation today. But the true answer is NO.

Not only would I encourage others to take them up, I would try them myself too, some day. Yes, even with my condition. There are paraplegics abroad who are rappelling on wheelchairs, even bungee jumping. I may not take up such extreme sports, but I do intend to do exciting things. I cannot let a single freak accident colour my view about life or take the sense of adventure out of living.

After all, what are limitations? It’s all in the mind: There are countless able bodied men and women out there with all their faculties intact, who will still not do the things they can or want to, because they let fear handicap them.

How different is their situation from mine? We are all operating from within certain limitations, real or imaginary, and it’s up to us to break past these barriers. If we don’t, we will be well and truly handicapped. Like I said, it’s all in the mind…

As told to ANJALI TRIPATHI, Health &Nutrition, Sept 2003