Thursday, May 27, 2010

Uncommon lady, extraordinary courage.

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......


  1. Wow, what an inspiring story!
    Hats off to the lady. It must have taken so much courage to do what she did.

  2. What an inspiring woman and such a great tribute to her! That does indeed take so very much courage to do the things that she did! Would that we could all be blessed with that kind of courage in our own lives. Thank you so much for this!
    Have a lovely evening and a beautiful weekend!


  3. Brought tears to my eyes, extraordinary courage indeed and I remembered a kin of mine..

  4. The brain is am amazing thing and this is a great story of not giving up and using logic to come up with solutions. I hope it gets more widespread coverage to others who night find it helpful. My friend had a mother (who has since died) with dementia. She found that painting with her helped her get some sense of reality and she did that almost every day.

  5. Hello, I come via Darlene's blog. I find your story fascinating for I have been associated with the MSSI Pune chapter for quite a while and know many persons with MS, one of who is a very close and dear friend. I know some other stories too about the spouses of persons with MS who have truly been of amazing character just as I know of families and spouses ill treating such persons. I am touched to the core reading your post and I wish your friend all strength and eventual joy in her life. Thank you for writing about this wonderful lady. I am sending a link to your blog to my friend too.

    Incidentally, there is no provision in your blog to give my URL which is I would appreciate your visiting my blog and commenting if you think it worthy.

  6. That was so inspiring. Her courage and her persistence, to keep trying, and not giving up. As you said, there must have been so many obstacles, and yet she stuck on..

  7. What a wonderful story about the courage to persevere when others would have given up. The husband was fortunate to have such an intelligent and caring wife. There is no harder job on Earth than being a care giver. Your friend is a remarkable lady and deserves the praise you have given her.

  8. Absolutely inspiring. THis person has my admiration.


  9. It always brings tears to my eyes when you say it the way you say... Really an inspiring story... I forget all my own troubles when i read something like this.

    Have you considered writing a book. A compliation of short inspirational exerpts from your life and around.

  10. A very touching post! Indeed a rare woman with great spirit!!
    Reading this, the pain; physical and mental, that i suffered fades away into insignificance! And makes me thankful to have the people in my life who have boosted my morale and helped me triumph!!

  11. The stories that you post are inspiring and often make me wonder how insipid some of our daily rants can get !

  12. That was inspiring...makes us think..will we ever have the courage to face this and react this way...

  13. What an amazing and wonderful person she is!

  14. arbitthoughts,MindfulMeanderer,Sylvia K ,Pins N Ashes,Rain,Ramana Rajgopaul,wordsndreamz,Darlene,Pearl,Enchanted , softypinkngloriousred ,Kavi ,sindhu ,dipali

    Thank you all for the kind comments.