A Personal Message

My dear Friends and Readers,

Several of you have e-mailed me wanting information about my health problems. All of you know I had a major stroke in April, 2006, and flat-lined twice. I have a genetic blood disorder that causes blood clots. I have had clots over the years several times with no real damage to me until a heart attack in 2005. But I have to take a blood thinner, warfarin (Coumadin) for the rest of my life to prevent further clots. Blood clots cause heart attack in the heart, stroke in the brain and death in the lungs.

What I haven't talked about is another congenital condition, a malformed aortal valve in my heart. I have known that sooner or later, I would need surgery for that. Well, sooner or later is now. My doctors say that my heart will last maybe three months without the operation.

Here's the problem: they would have to take me off the warfarin to perform the surgery. There is a very high risk of more blood clots then, causing stroke, heart attack or lung failure, any of which, in my condition, has a high mortality rate, ie, I would likely die. At the very least, I would be completely incapacitated.

I have chosen not to risk permanent, massive disability and to forgo the surgery. Lilly's father had a massive stroke; I watched him lie in bed, unable to eat, talk, move, communicate, unable to do ANYTHING, yet fully conscious. There are many definitions of hell. Surely this must be one of them! I refuse. I am a warrior, not a thinking vegetable.

That said, please don't write me off yet. The medical profession has pronounced me dying since before my birth. At my last stroke, they told my husband there was no hope, to make funeral arrangements. But, hey, I'm sitting here typing this.

I am not afraid of dying. Perhaps it is my upbringing, my beliefs, or my experiences of flat-lining four times in this one lifetime. (An interesting experience, I suppose, but I never saw tunnels or lights or ran into God, or even Guru Gobind Singh Ji. I did , I think, once meet up with a nihang and once with a nurse and once with another personage, who will here remain nameless.) Whatever the reason, Old Man Death holds no horror for me, in fact, it would be a release from constant physical pain.

However, I am not ready to die. I refuse to die in a hospital bed with weepy people gathered around me. Mai insists on dying fighting. I was born a fighter. I have lived a fighter. And I insist on dying a fighter. I still have a few things to do. I want to finish editing my 1984 journal, for one. And, of course, I want most of all to die in righteous battle as a shaheed.

My one fear of dying is how some people who love me will react. I saw my husband fall completely to pieces for 18 months when a son got killed in a car wreck. If I had not been there, practically force feeding him, shoving him out of bed, pushing him into the bathtub, etc., I doubt he would have survived. He is still horribly dependent on me emotionally; if I were to die, I'm afraid of what would happen to him.

I am almost as afraid for a young lady I have come to care about very deeply. She is 14, which is a very emotional and vulnerable age. She has already had too much tragedy in her life and, God help me! I don't want to add to it. I have told her not to mourn for me while I am still alive.

So now you have it. I hope this hasn't been too dry and personal. Again I tell my doctors what I have told them many times before: 'You have no idea who you are dealing with.'

Whatever happens, it is the Hukam of Waheguru and I accept that without hesitation.

Love to all,

Mai



--
WHY TRY TO FIT IN WHEN YOU WERE BORN TO STAND OUT?

A SPECIAL DAY

Our dear Readers, our Sisters and Brothers,

This is Suni. I have not written here for some time, but this is a very special day for Mai and I wanted to write an introduction for her. One year ago tonight, she died twice. The person she is now is both the person she was and someone new. All that the good that was in her is still there. She also still has her faults, but they are less pronounced. The person she is now is deeper than the person she was before. I hadn't seen her for twenty years before this happened, but now we are closer than ever. We are sisters and will remain sisters. Now I'll let her talk.

Love to all,

Suni

Today is a landmark day for me. One year ago tonight, I died. Twice. Two times. I had a major stroke and was not expected to live. But I am alive. And this has changed me. I had died twice before, once during surgery in 1983 and once in Delhi. The first time I was just glad to be with my husband and son. The second time I was furiously angry not to be with my husband and son.

I want to say one thing about dying. It is easy. It is nothing to dread or to fear. It is not painful or difficult. In fact, in my experience, it isn't anything. I saw no bright lights, no family, I remember no meeting with God. Death is nothing to fear. I feel I have the knowledge and experience to say that. 'Been there, done that.'

Four times in this lifetime I have died a physical death. Twice now, I have drank death from a bowl.* The second time was much deeper and sweeter than than first. I feel cleaner, more real, more alive than I have ever been before.

(*Scroll down to the entry of April 5, 2007. Please go to this link.)

The question, then is WHY am I alive? Everything has a purpose, including my continued existence in this partly functioning body. The cause and the reason are two different things entirely. To me, there can be no debate as to the cause: it is the hukam of Waheguru. S/he has decreed that I shall be alive in this form. And so I am.

But for what reason? I believe, after much ardaas and simran, that I am here to serve in whatever way I can find. This blog is a large part of that. I have learned that some of you have been inspired in various ways through it. I know this because you have written me, and I do appreciate the beautiful correspondence I have with you. It gives joy and meaning to my life. Some of you have suggested that I write a book. Perhaps someday, to be published after my death. But I could not accept any money for it. Then it would cease to be sewa and become just another money-making venture.

My physical recovery has been the fight of my life, a sustained battle against and with my own body. I can, with few exceptions, do everything I did before. I walk and talk and cook and write and knit, not as quickly or as well as before, but that will come with time. I am determined to continue working toward a total recovery. My doctors tell me that that is impossible, but I don't buy it. They also told my husband that I'd never do any of the things I do now, including breathe.

I have not regained my languages other than English. I have been struggling to relearn Gurmukhi, with very little success. This is incredibly frustrating, but I don't give up. I'll keep working on it. English, by the way, is my second language, just by a hair; French was my first. And the French is gone, too. Or rather, I have not yet been able to access those memory banks. I have hope that one day, I'll find the key and the languages will return.

My other daily problem is my hair. The electricity from the defibrillator that saved my life also destroyed my hair. No, that's a little too dramatic. I'm not bald!! But most of it has fallen out and what is left has broken off. So I have a kes that reaches, thinly, only to the middle of my back. And I can't tie it at all. I can wash it and comb it, but I have to rely on others, primarily my husband, to keep it tied and up and out of my mouth. One day try doing that yourself with one hand.

I was upset about the condition of my hair one day - what is left has the texture of lifeless straw - and was whining to my husband about it. (Confession: I don't whine often, but on occasion, I do.) He got annoyed with me and asked, 'What is more important, your hair or your life?' I thought of Bhai Taru, and didn't answer.

Now, please indulge me a bit longer and let me be a bit preachy. I direct this to those of you who are Sikhs.

We have been given a great treasure that we call the Sikh Panth. It is ours to guard, protect, love and, most of all, to live. It is written in our Guru Ji, Sri Guru Granth Sahib. We need him. We need to study and learn and love daily. We need to pass it on to our children.

We need to live lives of courage and conviction. We need to be people that others can look at with admiration. We must never conduct ourselves as objects of ridicule or accept being treated as laughing-stocks. That dishonours us as individuals and also dishonours our Gurus and our shaheeds. This is just my opinion, but I strongly believe that this is correct.

I have rambled on long enough. I still have some time, I think, to add anything I may have forgotten.

I will close with a big heart-felt THANK YOU to all of you for making this past year so rich and full and happy.

Peace, love and blessings,

Mai