Why should I carry on living when illness has cost me all I hold dear?

DEAR BEL, I HAVE a debilitating brain disorder called Multiple System Atrophy. The proteins in the brain build up and attack the autonomic nervous systems.

That means all the things your body does automatically are affected. Right now, my bladder has quit working, I have neuropathy in my legs — extreme pain — to the point where no drugs can give me relief.

All my kids are grown up, two of them are in college. But they’re not coming home when they finish and only talk to me when I call them. At the weekends, my brother comes to get me at the assisted-living place where I stay.

Because of this disease, I have lost my house, my wife … and what I know of life. My dad has only visited me once since I’ve been here. My sister has never called or texted to see how I’m doing.

I have nothing to look forward to, but suffering and eventual death. I wouldn’t wish this on my worst enemy. It could reach a point where I can see and hear everything that’s going on around me, but will not be able to speak or move to express what I want or need.

I am so very lonely, I crave intimacy and affection and I don’t think I will ever see it again. So tell me Bel, what is the point of living if you can’t enjoy life? If you can answer that one, I’ll stick around. Be careful with your words. It could end now. DAVID

Since many readers will find your email as distressing as i did, i just want to make something clear. After it arrived, i got in touch with you immediately and discovered that you live in the U.S. and sent your letter to more than one person, to see what they would say.

This i understand. But it does serve to make me feel less ‘responsible’.

You asked me to publish because you want people to know about MSA. Believe me, your simple, heartfelt truth will have moved readers to tears — and to deep thought, too.

You are asking for honesty, so i mustn’t flinch — complex and dark though it is. On the one hand, listening to one part of my brain, i could wax eloquent about the glory of life, about never losing hope, about waiting for the spring flowers to show their beauty.

i could say that the fact that you wrote your email and sent it out to various people you had identified as intelligent and compassionate demonstrates that you do see a reason for living. if not, why would you ask the question?

i could pick out uplifting passages of verse and prose in the hope that they might give you a few seconds’ respite. And, of course, i could suggest you seek help from a therapist or a priest because i do believe either or both might be useful.

Above all, i could assure you that every single life has real value, and

that John Donne was sublimely correct when he said, in that famous sermon: ‘any man’s death diminishes me.’

on the other hand, I’ll be frank and admit that in your position I think I would want to die. Many people will disagree for deeply held moral reasons, yet I adhere to the equally valid (in my opinion) moral position that assisted dying (in the right circumstances with all due supervisory care) should be the compassionate right of the terminally ill who wish their suffering to cease.

I use the word ‘compassionate’ deliberately — even though many sincere opponents of assisted suicide will disagree.

I would like the time to come when true kindness is enshrined within the law — and the terminally ill or dying are allowed to choose peace and dignity. My reverence for the meaning and value — yes, the sanctity — of life is deeply held.

That is why I’ve always believed (first as a humanist, now as a Christian) that those who can no longer bear terminal agony should have the God-given right to cry: enough!

Many years ago, I did one of the most moving television interviews of my career, with the acclaimed actress Zoe Wanamaker. Her father, the great actor and director sam Wanamaker, had died the year before, after a long battle with prostate cancer.

on camera, Zoe talked of how unbearable it was to watch his terrible torment, and described the unimaginable moment when she longed for the strength to place a pillow over her beloved father’s face. The pleading in his eyes was the worst thing of all. no wonder Wanamaker is one of the distinguished patrons of the charity Dignity In Dying.

Having written extensively about death and bereavement, I should flag up the work of non-medical people who believe that the dying can be supported spiritually, with tender care, as they approach the end. In the U.s., I talked to Megory anderson of the sacred Dying Foundation, and in england to Felicity Warner of The soul Midwives’ Movement — both wonderful women who train compassionate helpers in traditional skills and rituals, to ease the passage of people into death. Imagine if there was a ‘soul midwife’ in every hospital, to support the dying and their families . . . how good that would be?

However, even those who look after the spiritual and holistic needs of people at the end of life will admit their ministrations cannot cope with the worst kind of pain. and that is what you are suffering, David, every day.

Two friends of mine, husband and wife, chose Dignitas because both were terminally ill and neither wanted to outlive the other. The news was a shock, yet I understand why they made that decision — and so did their loving adult son and daughter who held their hands until the end.

THe most painful aspect of your letter, in one way, is your loneliness. It sounds as though what you need most in the world is somebody to hold your hand — and I wish you had more support from your family.

Have you told your children you need them — or are you trying to spare them? sometimes we need to say to those we love: ‘ Help me, please.’

I hope you will find as much support as possible, from your family and any friends who may have stayed the course — recognising the fact that most people are terrified of illness and death.

What is to be done? I would want the right outcome for you (and not those who opine with wellmeaning fervour on suffering they do not have to endure) and pray that you have the courage needed to face your life as it is, as well as its ending, when that comes.