Down but not out: How the wheelchair changed us

Have you ever imagined how your life would be if you were confined to a wheelchair? Imagine the adjustments you would have to make to your daily routine to accommodate this new life. How would you react +++psychologically? Would you be stressed, depressed, or suicidal?

If today the doctor told you that you will never walk again, would your dreams, hopes and aspirations still hold? Or would you lose your will to live?

It can never be underscored enough that a sudden confinement to a wheelchair — for the rest of one’s life — is a traumatic experience. Those who have gone through it tell of a pain that experts have compared to the loss of a loved one in intensity.

It takes years for one to get accustomed to a life on the wheelchair, and the physical and psychological upheaval aside, it is also quite expensive.

However, beyond the stress and depression as a result of the sudden lifestyle shift, there are some who choose to rise above their circumstances and simply “move on”. Here, four incredibly brave people share their experiences and inspirations.

MAIMED IN ACCIDENT

Rosemary Kung’u

Clothing retailer

Age: 40s

I was involved in an accident along Waiyaki Way, Nairobi 11 years ago and sustained severe injuries to my spinal cord (T12-L1). This meant that I was paralysed from the waist down, and I have been on a wheelchair since that young age. To top it all, I was a single mother of a 13-year-old girl at the time of the accident.

I was depressed and even contemplated suicide. Many people talk about the personal trauma they go through once they become disabled, but few talk about the trauma it imposes on the family.

My daughter was equally distressed. She thought I would die and would cry at the fact that they had to do everything for me, including bathing and turning me in bed at night.

My life came to a standstill. I was a fashion designer and clothing retailer and I had to close my business and move back home with my parents. Yes, that is how this disability set me back.

I stayed indoors for three years, contemplating what to do next. Finally, I pulled myself together and opened my business with the help of my parents. Never underestimate the value of family in difficult times!

Today, I run a retail shop and supply clothes. My daughter, my pride and joy, is now 23 years old and almost completing her university education. Like me, she has come to accept my condition after exposing her to many other parents who are also on wheelchairs and she has seen some who have lived with their disabilities for decades.

I know we are focusing today on the “triumph” aspect of being disabled, but I’d like people to know how expensive this is. When I got disabled, I constantly needed physiotherapy and the aids we use — the wheelchairs, diapers and catheters — are very costly.

On top of that we have to deal with the stigma as people tend to doubt your capabilities when you are confined to a wheelchair. I came to accept myself and my condition when I joined a group of other disabled people.

I am a member of Health Miracles Center, a group of paraplegics that meets to share experiences, and which has made me realise that I am not the only one facing this challenge.

I consider myself 98 per cent a normal person. My typical day begins at 5am when I leave the house and go to the gym. I drive myself around, shower by myself, dress myself and do everything for myself. Basically, I am an independent woman, the wheelchair notwithstanding.

My plan for the future, besides growing my business, is to go back to school to study counselling psychology. Eventually, I want to walk with people with disabilities and help them come to terms with their condition.

BOMBED BY TERRORISTS

Robert Maina Ndung’u

Administration Police Officer

Age: 30s

In August 2010, while on duty, we were ambushed by Al-Shabaab militants who bombed our vehicle. I sustained severe injuries to my spine (C6-C7) which means that I am paralysed from the neck downwards. I am not a paraplegic, but a quadriplegic, meaning that both my hands and legs are paralysed.

Doctors say that I am lucky to be alive. They say that were the injury a little higher up the neck, I would never have made it out alive. For that, I thank God.

When doctors told me that I would never walk again they broke the collective heart of the family. My parents were so traumatised that my father was admitted to hospital.

The first six months after my injury were the worst. I stayed indoors and feared the world. I did not want to face people and answer their difficult questions such as “what happened to you?”. I also did not want to go home and let my parents see me in my condition.

It has been a humbling journey, I must admit. Not being able to control your bowel movements and depending on people to do things for you is a difficult place to be in. After my injury, I rented a small house in Githurai but my bosses — Deputy Inspector-General of Administration Police Samuel Arachi and Logistics Officer Charles Karege —  insisted that I move to Wilson Airport, where my life changed for the better.

My colleagues really appreciate me and have helped me pull through some of the darkest moments in my journey. They treat me with a lot of respect and even take me out to make me feel normal again. I can confidently say that my life is better since I got paralysed!

I kept my job as an Administration Police Officer, this time based at the National Police Service headquarters at Jogoo House. I work under the directorate of logistics. It is not a bad job, if you consider that I have a driver assigned to pick me up and drop me off at work and home every day.

The highlight of my life, though, is my lovely wife, Hilda Wanja. We are blessed with two children, a four-year-old son and a three-year-old  daughter. Not a day goes by without appreciating my family.  My military background has helped me remain stoic in the face of adversity. I was the one who encouraged my parents to stay strong and asked them not to worry because I knew I would fight this.

I stayed in hospital for one year after the attack and it hurt me to see my mother close down her business so she could take care of me. I vowed that when I got better, I would take care of them.

My dream has come true, even in my condition, I can proudly say that I not only take care of my wife and children, but managed to take care of my parents. It is interesting that in spite of my disability, I am better off than I was when I was able-bodied.

INJURED IN ACCIDENT

Grace Kawala

Businesswoman

Age: 27 years

I was a brilliant second-year student eager to get  what the world had in store for me when, six years ago, I was involved in an accident on Mombasa Road. I sustained a complete spinal cord injury (T6-T7), which is just another way of telling you that I am paralysed from the waist down. As you can imagine, it was very devastating. I was then a student at Mount Kenya University pursuing a Bachelor of Commerce degree.

The first days on the wheelchair were tough. My self-esteem took a beating and I felt useless. I looked down upon myself even before others could. I had to deal with some pretty embarrassing adjustments, such as the fact that I no longer had control over my bladder and bowel movements. I also had to be bathed and clothed. What hurt me the most was that only a month earlier I could do these things on my own, and now I had to depend on someone to even turn me in bed at night!

Adapting to this life and accepting myself has been a long and difficult journey. My parents struggled to help me come to terms with my situation, but I was in denial for about three years. I did not want to return to school in spite of my mother’s desperate pleas.

Life took a different turn when, in 2012, I lost my dad. That tragedy was, in a beautiful way, the wake-up call I needed. I went back to school at Kenyatta University where I met several other students with disabilities. I couldn’t believe what I saw; even with their disabilities, they lived such normal and happy lives. I wanted to be like them.

Soon, I regained my confidence, accepted this life, and vowed that I would never let my disability impede my dreams. I even ran for a student leadership position and won, representing students with disability.

When I landed an internship with Kenya Reinsurance Corporation, it was time for me to test if I was ready for the world. Taking a taxi to and from work was very expensive for a student like me, so I decided to challenge myself. I rented a house near Kenyatta University and started taking a matatu to work. By the end of that internship, I knew that I was ready for the world.

At 27, I live a fairly normal life. I live alone, cook for myself, dress myself, run my Uber taxi business, and go out with my friends. I graduated and recently completed an internship with the World Bank, and I am hoping to grow my career. My dream is to help other people in my condition accept themselves and live a normal life.

ATTACKED BY DISEASE

Elly Munoru

Businessman

Age: Late 30s

I woke up one morning in my early 20s to find that my mouth had shifted to one side. Doctors later told me I had contracted Bell’s Palsy, a condition that causes temporary weakness or paralysis of one’s facial muscles.

A few weeks later, my legs started losing sensation from the toes upwards, and within no time they lost all sensation. I was becoming disabled right before my eyes and doctors did not know what to do!

Finally, I was confined to a wheelchair — remember, in my early 20s — before I could even go to university. It was a very long and lonely journey, I must say. My friends disappeared, but thank God for my parents, family  and my faith.

As a young man at the cusp of adulthood, my disability took a psychological toll on me. I stayed indoors for about two years without interacting with friends, feeling sorry for myself. I wont lie that I did not contemplate suicide.

No, I won’t.

I even had the suicide plan carefully mapped out, but something gave me the will to fight on.

Accepting my condition was the hardest part. I had always lived with the prayer that one day I would get healed and walk again, but I finally reached that point where you have to accept and move on.

It has been 16 years since I was confined to the wheelchair. I am now married to a beautiful woman whom I met in church through the persons with disability church ministry. But before I got married, I lived a fairly normal life, alone and with the zeal of a young man eager to face the world.

You see, even in my condition, I have to face life and adjust accordingly. My typical day now involves taking an hour to shower and prepare for work, drop off my wife at work, and attend to my businesses.

Because of the financial crisis my family went through when I first got ill, I was not able to go to university, but now I want to go back to school and fulfill the dream of finally attaining a degree. I have some very elaborate plans for my future. I was in the imports and exports business which has proven slow in the past couple of years, so I want to take advantage of the 30 per cent of public procurement opportunities set aside for the disabled, women, and youth.

I don’t just want to survive, I want to thrive and I want to tell the story of disabled people in this country the way it should; that you can beat this, and you can live a normal and fulfilled life.

What keeps me going, besides my wife and family, is that one day I want to be a father.

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Your back in action

World Spine Day: Observed every year on October 16 to raise awareness on spinal disorders. This year’s theme is Your Back in Action, and the importance of physical activity and improved posture is highlighted as part of a healthy spine and the prevention of injury.

Your spine: The vertebral column — or, simply, the spine — is made up of several small bones known as vertebras. In between these bones are soft discs that act as shock absorbers of the spine. Joining these bones are small ligaments and muscles, and inside the vertebral column is the spinal cord, which goes all the way from the neck down to the lumber region.

Network of nerves: From the vertebral column originate nerves to the hands, legs and other body organs. Injury affects these nerves. There are injuries of different levels depending on where the vertebral column has been affected. The spinal column has an elaborate naming for every link to it. The cervical vertebrae, which include the neck bones, are labelled C1 to C7, the thoracic vertebrae are labelled T1-T12, the lumber vertebrae are labelled L1 to L5, while sacrum are labelled S1 to S5.

The risk: Dr Dennis Otwori ,  a medical practitioner at the National Spinal Injury Hospital, says spinal injuries are the second most severe injuries sustained by human beings, coming only second to head injuries. Although overall country data on spinal injury cases is yet to be collected, the National Spinal Injury Referral Hospital says of all the patients admitted in 2013, 84 per cent were paraplegic and 16 per cent quadriplegic.