They were a successful couple. He climbed the corporate ladder, and there were no more rungs left for him to climb. With her post graduate qualification, she could have had a "career" per se, but, never thought she was doing any less, as a support system for her children, their education, their higher studies, organizing the infrastructure, and so on. By and by the children were into their own lives, the grandchildren appeared , and she had another set of claimants on her time, this time, on a cheerful priority basis.
At some point in this wonderful scenario, there were some health scares. For the husband. Movement problems initially. The best of the doctors looked into it, and diagnosed the thing as Multiple Sclerosis, or MS.
Medications. Therapies. Discussions. Advice. It had to do with intense pain and nerves. It was about some nerves loosing their insulation, which is called a myelin sheath. This could happen anywhere in your body, and this was characterized as a disease of the Central nervous system (spinal cord and brain stem). You never knew which part of your body would suffer next. Initially, he continued to work. Actively. Things appeared to be under some kind of workable control. And then movement became painful. For a person with a successful active career graph with a great slope, this was difficult to accept. Retirement loomed, and was a comfortable one
These were days, when he couldn't move without help; calling out to someone all the time really really bothered and hurt him. Got him very upset. There were days when he was better . And there were days when going anywhere even in his wheelchair was impossible. And so in between attending to and looking after every need of her husband's, she started reading up on stuff. A friend of hers mentioned a book , "The Brain that changes itself" by Dr Norman Doidge to her, which told you about neuroplasticity : it was all about how , when some part of your brain dealing with a bodily function(s) was malfunctioning, how you could train another part of your brain circuitry to handle this.
She literally devoured the book and got thinking.
Sleepless nights were spent googling for contraptions that could be used for the therapy. The stuff on Google was available in the US, cost upwards of $1000, had a lot of bells and whistles and beeps to trigger action on the patient's part and you still didn't know if it was the thing for you. Then she decided to try something herself, based on what she read. It was all about trying an action, and reacting to the body's feedback, and getting used to the body's feedback, to the extent that brain actually started believing it was meant to do what they were teaching it to do. And so she studied the set up, read up on the science, enthused her husband to try things, and he'd get up, with great effort, and slowly, he would imagine he was climbing down stairs, position his ankle and perform a step. When it was done as per the instruction, she would clap. And he would try again. Of course there were glitches in her responses too. Sometimes housework intruded. There would be phone calls. And so she cajoled an engineer relative into making for her, something that would beep instantly, on successful completion of the single required action.
Things improved, and he progressed to walking with a cane. Of course, there were some other bodily function issues, but solutions to those were known and available. She was successful, not just in this physical change, but it brought a mental change in him too; he cheerfully, slowly walked down to the garden in the evenings, to sit for a while with folks from their building, and had a nice time with friends.
All throughout this, the visits to the doctor continued, but she and he were now part of a support group for similar patients. Folks thronged to listen to her experiments, asked for the book, and for a while , the local bookstore had a waiting list for the book. They rejoiced in her experiments, the occasional successes, and were inspired to try something themselves. Of course, in a social system where extended families were important, she continued to attend important social functions, with him when he felt up to it, and by herself , when she had to. There were times when she had to rush to the hospital, and although family help was around, it was mostly really these two when the decision to hospitalize was often taken.
She inspired a huge sense of respect and awe in those who saw her trudge her way through so many obstacles that she was presented with. It wasn't just physical; this was a time and age, for both of them to travel, enjoy their grandchildren, spend time in their hobbies and friends. She literally made his affliction her own, mentally.
As it often happens, such patients often end up acquiring some other medical problem, well into the first one. He started having trouble swallowing. At first they thought it was an MS thing. But it wouldn't go, and doctors were consulted.
The diagnosis was not good. The Big C. With the attendant chemo and radiation therapy. The side effects were too many and unbearable. For a while it looked like he was over the worst. But it was not to be.
Last week he was rushed to hospital, when breathing became troubled. MS had taken a back seat, and the Big C had won.
She came back home alone.
This is a tribute to someone one has known for many many years. One has always known her to be academically smart, but she has been unparalleled in her seeking and application of knowledge, with great empathy, to lighten her husband's burden when he was stricken. She has no sons, and her daughters and their families, some staying far away, have stood by firmly in actual and psychological support, all along. You talk to her, and she still makes you live through it, when she cheerfully describes how he improved . She knows she isn't superwoman, but she knows how to laugh at her self when she tells you about falling fast asleep, in a bedside chair, after days of constantly attending to him in severe pain, when the daily male nurses she had paid for, simply did not turn up.
She couldn't afford to slow down. And it is not always about anatomy and treatments. Anything can happen . ( In India).... When the nurse agency, which was paid in advance, washed their hands off the sending of nurses, she and her friends, went and threatened them with a police complaint of fraud, whereupon , very soon , a decent , responsible male nurse appeared on the scene.
This lady is a lesson in what education, learning , understanding, empathy, dedication, and family is all about. Its not all about doctors telling you things that you don't understand. Its not all about fancy hospitals, and infrastructure. It is about having the guts to deal with the affliction as if it were your own, passing on this enthusiasm to the actual patient, and being able to understand what's happening.
And whats more, facing it. Bravely, with a smile.
Uncommon lady, extraordinary courage......