By Karen Lyndem
Where are all the survivors? Why do they seem so hidden outside of health care centers and their homes?
Spinal Cord Injury is one of the most common causes of disability incapacitating an individual to lead a normal life. The ‘World Spinal Cord Injury day’ that is observed on the 5th of September 2024, is an initiative of the International Spinal Cord Society (ISCoS) to build awareness and promote the inclusion of disability throughout the world. According to the World Health Organization (WHO), annually around 250,000 to 500,000 people suffer a Spinal Cord Injury (SCI) globally and the majority of the causes are preventable like road traffic crashes, falls, or violence. In our state of Meghalaya, according to the UDID Statistics of 2024, out of 29,536 registered People with Disabilities (PwDs) 10,451 of them have a locomotor disability, which, among other causes of locomotor disabilities, includes Spinal Cord Injuries. This accounts for 35.4% of total PwDs, which is the highest among the twenty one disability categories mentioned. Among the districts of Meghalaya, the East Khasi Hills District has the highest number of persons with locomotor disability compared to the other districts, at 21.33%. Yet, what happens to these survivors post hospital treatment? How have they adapted to life?
Following a Spinal Cord Injury, a person may be debilitated either temporarily or permanently, and consequently, may experience psychological and emotional trauma as well. Therefore, maintaining a positive outlook is extremely important for patients with such conditions. When sickness or injuries cripple us, some form of grief is always guaranteed. Acceptance is a very important step in the healing process. But many people who have disabilities may understand acceptance as a form of ‘learned helplessness’, where they come to accept themselves as invalids- they are hopeless because they are helpless. But are they to blame for all of it? If their mobility depends on accessibility, how inclusive have we made our society?
There is an advertisement titled ‘Assume that I can’. It features Madison Tevlin, a teenage girl with Down Syndrome, addressing the camera. She audaciously says “Parents, you assume that I cannot live on my own. You don’t encourage me to live on my own. So, I don’t live on my own. Your assumptions become reality. Coach- you assume that I cannot hit harder, you don’t train me to hit harder. So, I don’t hit harder. And teacher- you assume that I cannot learn Shakespeare, you don’t teach me Shakespeare, so I don’t learn Shakespeare. But Hey! If all your assumptions become reality, then assume that I can live on my own, so I live on my own. Assume that I can hit harder. So that I hit harder. Assume that I can learn Shakespeare. And maybe I will learn Shakespeare. Assume that I can… so maybe I will”. The video moves on to show her accomplishing those feats.
Iarapborlang Chyne is a 35 year old quadruple amputee. Because of an accident that involved him being electrocuted while working on household wiring, all of his limbs were inevitably amputated. That would be enough to drive anyone to a state of resentment and depression. But he had hope. And because opportunities presented themselves to him, he made the best use of them. His sponsors helped him to procure prosthetic legs, following which he worked hard to gain some level of independence. They assumed that he could. And so he showed them that he could.
Iarap is now working a full time work-from-home job and is the sole breadwinner of his family. He lives with his mother and brother on a steep slope and, because of his grit and determination to learn to walk again, he now seamlessly navigates with his prosthetic legs. In fact, Iarap hopes to one day be able to procure runner blades so that he could train to run. There are many cases like Iarap, who want to believe that their hope can turn into reality.
At PMR Centre, Laban, our team consists of a Physical Medicine and Rehabilitation doctor (MD PMR), physiotherapists, occupational therapists, lab technicians, a counselling psychologist and Medical Social Workers. As a team, we aspire to assist our patients with their physical and social rehabilitation. After the physical trauma and the medical interventions- the hospital visitations and the doctor’s consultations, the onus of rehabilitation falls on the patient. We cannot begin to imagine how difficult and daunting it can be to adapt to a life with an impairment. That is where Physical Medicine and Rehabilitation can step in- to aid Spinal Cord Injury survivors to facilitate their rehabilitation . PMR Centre has incorporated the latest technologies such as Hydrotherapy to improve balance control, Virtual reality technology to improve cognitive and body coordination, and other full-fledged rehabilitation protocols for comprehensive SCI training. But apart from that we also provide group and individual therapy sessions for patients and caregivers to enhance mental and emotional well-being. Last but not the least, we help our patients who are physically disabled to attain necessary paperwork and registrations which will be contributory to their holistic healing.
On September 5, 2024, PMR Centre will be organizing a ‘Back Care Camp’ at the centre from 10 am to 1 pm, that is open to all. The aim of the program is to cater to persons with back issues and also to facilitate those with Spinal Cord Injury to come forward to seek medical attention , awareness and advice. Subsequently, there will be an ‘In-house Group Therapy Session’ for SCI survivors and their caregivers.
We serve to instill hope in Spinal Cord Injury survivors, emphasizing that ‘healing’ is multi-dimensional and that they are not alone.
“With man it is impossible, but with God, all things are possible”- Matthew 19:26.
(The writer is a social worker at PMR Centre, Laban).