Spinal cord injury warriors

“I was driving a Honda City rather fast, hit a pothole and then the road divider. The car toppled and nothing much happened except for a fracture here … (pointing to his upper back).” But that fractured bone poked his spinal cord, “which supplies messages from the brain to the body and vice versa.”

Justin , along with S Vaidyanathan, an IIM Bangalore graduate and brilliant financial analyst; Naveen Iyer, a team leader at Accenture and Manoj Kumar, a vivacious boy of 11, have all come to the Rotary News Trust for the interview. They are all on wheelchairs and exude a cheer, camaraderie and positive energy that is infectious. Over the next 90 minutes, we discuss spinal cord injury, the harm done in shoddy handling during transportation from the ­accident spot to hospital, callous doctors, inadequate rehabilitation facilities across India and what positive “mental stamina” can do!

Vaidyanathan quit his corporate job 30 months ago and is now helping and guiding, through The Spinal Foundation of India, set up last year, the rehabilitation of scores of people who suffer spinal cord injuries.

Justin, a tetraplegic, reiterates that spinal cord injury is often confused with orthopaedic disability. “Not a single joint or bone in any of us has a problem, but we are paralysed below our levels of injury; for me neck down, which means my hands, wrists and fingers are also affected.”

He says after the accident, during which his phone and wallet were stolen, “I was sitting up and called my wife from a borrowed phone. I held the phone, so my finger function was fine. I was sitting, so my thoracic region was fine.”

But what happened next was a nightmare and shouldn’t happen in any accident. While being transported to the hospital “even as I complained of neck pain the paramedic was flexing my neck.” This, he suspects, triggered his extreme disability. “In any neck level injury, it is very important to secure the neck with a hard collar.”

“Two things make a difference; focus on your ability, not disability, and have mental stamina. If you want to be independent move away your caregivers … making them live your life is terrible.”

Justin realised that the paramedics had really messed up his case when he heard the Emergency doctor yelling at the paramedic that “he is complaining of neck pain and you are flexing his neck. He was screaming, but it was too late … that same day they told me you’re paralysed neck downwards, we have to do surgery.”

The Spinal Foundation

The Spinal Foundation (TSF) at ­Vellore was set up last year to guide people with spinal cord injuries. “Unlike other physically challenged people who have pan Indian organisations for decades — the National Association for the Blind exists from 1948 — there was no such thing for persons with spinal cord injury.” Apart from guiding the injured on the importance of rehabilitation, TSF does advocacy with government as spinal cord injury is classified as “orthopaedic disability” though it imposes multiple disabilities at one stroke.”

“We’ve come across several cases where people are paralysed after the accident because of mishandling when transported to the hospital,” says Vaidyanathan. He recalls that when he had a freak fall from the parapet wall while in second year at IIM, Bangalore, luckily his friends said be careful of the spinal cord, and ensured he remained flat while being transported to hospital.

Also, the injured person should not be given any fluids as this will delay any surgery that may be required. “So no sitting, no fluids to drink or sprinkle on the face, securing the neck with a collar or any other material make it immobile and treating the person like a log — these are basic essentials in any accident. Every ambulance must have a collar and a full-length stretcher.”

“Rotarians, who took up the battle against polio on such a war footing, should take up spinal cord injury as their next challenge.”

Vaidyanathan’s story is fascinating too. The same night he asked the doctor if he could be mobile using a wheelchair and got affirmation. The third day he was in Christian Medical College (CMC) Vellore, the oldest and best for spinal cord injury rehab services in India. After six months at CMC he went straight back to IIM, Bangalore.

Mother-son duo in college

But it wasn’t easy; at first they refused to take him back; there was no access to classrooms “and they had no idea how to deal with a case like mine. But after a beautiful 343-word summary by my doctor on how India needs to deal with people like me, some phone calls and my mother deciding to go with me, I was back!”

At the age of 67, “she had amazing hostel life, enjoying all the cakes and ice creams distributed during birthdays, even though being a diabetic!”

On attending lectures, he smiles: “Thankfully there was no access to classes so I didn’t have to attend any lectures; I studied on my own,” he laughs.

But getting a job was no laughing matter. In 1992, after passing out, came the campus interviews. Those days the corporates weren’t too happy to employ disabled and he attended interviews with the ICICI Bank, Hindustan Lever, JM Financial, Bank of America, Citibank; you name it, I cleared the interview.”

But none of them would have him, the moment they saw him on the wheelchair, they said sorry. His ­earlier employer (before he joined IIM) refused to take him after a round of interviews because the owner wasn’t happy employing a handicapped person. One bank, in the second round, asked him atrociously and insensitively why his scrotal area was “so big. Normally I keep a towel around the area to absorb any urine leak, as most of us have partial or no bladder management control.”

“This is not an ortho disability. Not a single joint or bone in any of us has a problem, but we are paralysed below our levels of injury with multiple disabilities.”

The Hindu group of newspapers in Chennai had just started their business daily — The Hindu Business Line — and “to the immense credit of the then Executive Editor K Venugopal and senior editor R Vijayaraghavan, they didn’t ask a single question on my disability or wheelchair. Venu simply said go and check out the rest room.”

Later, a special toilet was constructed near his workspot.

An amazing employer

The third story is of Naveen Iyer, a team leader with Accenture in ­Chennai. Riding a two wheeler near a construction site, and suddenly finding a heavy sewage truck headed for him from the wrong side, he jumped but ended up with a spinal cord injury that has paralysed him waist downwards. He passed out and can’t vouch for it but his friend swears he saw him moving his legs in the hospital. “Perhaps later, in the ICU, they did something after which I lost the movement. A lot of mishandling and mismanagement happens in hospitals,” says Iyer.

But his employer has been amazing. “My superiors were very co-operative, held my position while I was in hospital and ensured I return to the same team. And my workplace was already accessible for handicapped.”

But Justin was not so lucky. His IT employer first said they’d reduce his team. When he threatened to quit, “they said they’d move me to bench, which meant that after a month I’d lose my job. I told them why wait for a month, I’m ready to quit now.” This zapped them, and they allowed him to work from home. So he moved to Chennai “where my support systems were.”

Bladder management

I watch all of them rising and lowering themselves on their wheelchairs at ­regular intervals. Vaidyanathan explains these “wheelchair push-ups” are necessary to avoid skin breakage. Because such injuries result in loss of touch and pain sensation, it is easy to get skin problems referred to as bedsores. “You people automatically twitch and turn every now and then, but because we have no pain sensation, and the blood circulation is greatly reduced to the lower half of the body due to lack of activity, every 10 minutes we have to do push-ups on the wheel chair.”

“Manoj has sent 16 children with spinal cord injury to schools; at 11, he should be the youngest such counsellor in India.”

Coming to bladder and bowel management, what is taken for granted by us is a struggle for them. They are taught different methods of catheter management; Justin needs it all the time and carries a bag which has to be emptied regularly. Adult nappies are an option but the cost is huge. Both procreation and sex are difficult but can be managed with external inducement.

Coming to wheelchairs, use of motorised wheelchairs is not advised because it denies the users their much-needed exercise. “Had Justin been using one, his hand and finger movement wouldn’t have improved so much. He used one for some time, but gave it up; all over India not even 10 will be using motorised wheel chairs. Manual wheelchairs keep us healthy.”