Assisted Life: An Indian Experience

Assisted Life: An Indian Experience

By

Sai Padma Murthy

“Do not judge me by my successes, judge me by how many times I fell down and got back up again.”

― Nelson Mandela

I was born differently and making a difference in the life of differently abled in today’s digital society. Firstly, let me wish you all A HAPPY INTERNATIONAL DAY OF PERSONS WITH DISABILITIES -2022 This year is theme is “Transformative solutions for inclusive development: the role of innovation in fueling an accessible and equitable world. “I was disabled all my life and have been working for Disability rights and inclusion all my life. My living example of living a life of iron lung, fragile bones, weak muscles, over fatigue and over enthusiasm for life.

This year theme matches my life- How innovation and assistive technology brought some change in my existence and gave direction to my life as well. Let me explore life stages of polio in me and I am submerged in polio.?

Stage: 1

I got polio at 45 days. From then, it’s a journey of several assistive devices and environments. At 6year old the braces i was wearing here were 10 kgs. My mother the pillars of my rehabilitation used to take me to one hour bus drive to another town called salur. There, there is a Leprosy Mission Hospital which only has an artificial limb center and orthotic prosthetic unit. I remember asking my Ammamma, will my hands and legs be also fall off like the patients there? Why they are always touching my legs checking whether I feel anything or not? – Ammamma doesn’t have an answer. She used shush me sometimes and sometimes just say, that’s the way it is..! if you want to walk, you must bear it all. Remember what I said- your life will not be same like others, don’t compare. You must walk…!!

Stage-2

Yes, walking I did, lot of pain, bruises on thighs and wherever excessive pressure is there. Endured one fracture. But, from double iron rod-based calipers to from waist to promoted to Single iron rod-based calipers from thigh called Hip Knee Ankle Food Orthosis. Hard learning...! I was 10 or 11. Heavy knee pain and slowly calipers have become like a second skin. King George Hospital, Visakhapatnam and people working there gave much needed support. I had to change my orthosis almost every 6 months, as there are many corrective surgeries were performed on me- to ease muscle contractures, to support food drop with bone grafting and other minor muscle supports. My life was nothing but series of visits to hospital for getting surgeries, to remove stitches and also adjust calipers accordingly. Two new sets of calipers made by two untrained technicians diligently gave me two fractures.

Only silver lining of life- friends who stood by me, my stern grandmother and strict parenting of teaching me all life skills for independent living- wearing cloths, bathing, grooming myself, walking short distances. Her mandate for my stage- don’t let anyone carry you, Carry yourself no matter how hard it is.

Stage-3

I was 15, from that age to another 3 years are like blur with pain. Extreme spinal pain and slowly like a plot in the story, my spine got twisted like in letter S shape. Breathless nights, heavy fevers, cough and vomiting’s have become part of my life. I didn’t know whats happening and slowly my dream of straight walking vanished. I used cry loud in nights when no one is around and silent when full of guests and cousins. Father told me it’s kyphoscoliosis. Means due to excessive walking or posture variation or in some cases with no apparent reason (doctors call it idiopathic) spinal cord gets twisted to one side or the other obstructing lung space or lungs. In my case, the spine is curved so much that one lung is totally crushed to smallest size and only one lung functioning okay.

Parents thought I had enough of surgeries for my legs and they heard some death cases due to spine surgeries, so they sent me to Guntur for getting a spinal brace made of hard wax fixed with aluminum rods from outside. I used to have a photo of it. To make the spinal jacket they took my measurements by putting me on endless hours on a traction machine. Oh.. I get teary eyed whenever I think of this stage. I seriously contemplated committing suicide, provided my grandmother leaves my side for a minute. I came back with spinal brace and advised to wear it 24/7. I could hardly wear it for a week, I was shamelessly crying and writhing in pain. I used to get dreams of burning the spinal jacket. To my relief, my grandmother also couldn’t see my pain anymore and declared to my parents that- lets find any other way, this is not working.

The spinal jacket with aluminum rods and iron screws is my most hated assistive device to date.

Stage-4

Got surgery done in 1996. They said, problems will be solved. Two titanium rods were inserted and hooked to my spine to make it straight, though doctors couldn’t fully correct the curvature, but they cleared my lungs. You are free to breath... my doctor Dr Sajan Hegde said, what a relief and book I thought?? True to his word, never had frequent lung infections after that. But the story is not complete. After 2 and half years on bed recovering and also with strait spine, my posture is fixed straight like the rod in my spine. So I was unable to do my previous moments of walking and also maneuvering the moves while climbing the steps etc. My life started again with learning sitting, combing hair, taking my hands back, cleaning myself and also doing small small things. My career stopped, couldn’t finish my professional exams as I couldn’t write for long times. The spasms of hands increased. Doctors said its because my body is getting used to my new spine again. It takes time- the standard reply I get from any doctor I have ever visited. Its frustrating. My brother suggested power wheelchair. My father manual, so manual wheelchair I have become. I told myself its only temporary. I used to live mentally with my Ammamma who was no more then, I lost her to ovarian cancer.

I used to think and respond how my grandmother used to deal the situations. I studied hard, worked hard. It’s a never-ending pain cycle. Over usage of medications gave me ulcers and I had to undergo another surgery for ruptured appendix.

I was clueless. I know bodies are meant to walk. I didn’t get this strange pain and helplessness when I was walking and relatively independent doing my chores. But every day I say to my self that I will quit wheelchair tomorrow. But, was unable to walk like a robot with a fixed spine and fixed and heavy calipers.

Stage-5

The next day I will walk turned into almost 25 years in wheelchair. Meanwhile I married my best friend, worked for many children. Started a non-profit and travelled to the extent I can. All on a wheelchair, but my yearning for walking didn’t stop. I have been searching for walking solutions and my gait management. Assisted by my husband, I adopted healthy lifestyle of eating and started working on self. But years together sedentary life, took its toll and I was almost nearing post-polio syndrome. Everyday I used to say myself-one day I will walk and stroll on beach with my partner.

The innovation in surgeries made me breath and alternative lifestyle which has become the prime made me relatively painless. After living with pain for 36 years, I stopped all medications from the last 12 years.

I sharpened myself to live Assisted Independent Life.

Stage-6

In 2015, I found a solution in Carbon Graphite Braces. The boldest step I took so far is trusting a technology and risking my energies and trying to walk again in 40s of my life. The story is unique it has unusual beginnings and challenging times. As a support pillar, my partner believed I can walk... he also can believe I can waltz ... that’s the problem with love of course... !

Now I am walking with support of a walker and also able to stand longer duration. My foot drop corrected and my legs feel alive. I am able to stand for an HOUR... can you believe it? crossed great pain phase, and traveling through fatigue phase. For all my old friends, its not news. I can’t convince them this walking like a normal person is different. I stopped convincing but I know the quality of life I am leading now. The confidence I am feeling and the Hope that, I will walk again and do all my chores and look at everyone eye to eye is altogether a great feeling and real innovation for an equitable and inclusive world for me...!

So, what is my next stage??

Stage-7

No matter what life throws at you, or how unfair you think it is, never give up. Pick yourself up and go on. I walked this long.

Along with my soul sister, partner and mentor, I started a new enterprise to make India and if I can make south east Asia walk.

At a stage and age where everyone thinks and plans for a retirement. We at Brace AID, a social start-up for Bracing Solutions believes that, its always right time to invest ourself in future technology that makes the life a bit better, comfortable and qualitative.

This is my story of Hope, Celebration, Innovation, Technology Towards Inclusion and Equality with Quality…!

IF YOU LIKE MY STORY, TALK ABOUT BRACE AID TO AT LEAST ONE, TELL THEM THE POWER OF ASSISTIVE TECHNOLOGY. TELL THE SUFFERERS THAT, THEY HAVE SOLUTIONS. IF THEY WANT TO WALK, WE WILL MAKE THEM…!!

IF YOU WISH TO BE OUR FRIEND, FOLLOW OUR EFFORTS, CONNECT US TO RESOURCES YOU HAVE ACCESS TO. INCLUSION INDEED IS A CELEBRATION.

HAPPY INTERNATIONAL DAY OF PERSONS WITH DISABILITIES-2022

Thanks, and regards,

Sai Padma

Founder Director, Brace AID, along with Sarahana Kumari, Ram Sunder and Pragnanand