Bringing light to relieve MS darkness

The car got clamped, the killer heels were sold out, the stupid bag handles are slicing your palms to ribbons and if You Raise Me Up assails your ears just one more time, you may well morph into Dirty Harry. Who needs this stress? Meanwhile, in a small townland near Cavan town, where the peace is a balm and the frosty fields and forests are a pixie-dusted wonderland, lives a woman for whom such "stress" would be a pleasant change.

Joan Morton loved shopping. She still does. At 50, with her perfect skin, big blue eyes and fur-lined coat, she looks younger than 40. In 23 years of work, she took just 10 days' sick leave, and that was for chickenpox.

Apart from her insurance job, she was a youth club leader, a Sunday school teacher, a mean badminton player, a knowledgeable gardener and a fine baker. Though she always wanted to get married and have children, she was 30 by the time she met Fred and 32 when she married. When she became pregnant in 1992, she gave up the extra-curricular activities. This, at last, was her time.

What happened next is not easy to absorb. Merilyn was born at 30 weeks, the size of a bag of sugar and with damaged retinas. She remains partially sighted. Merilyn was nearly two years old when, on a bank holiday Monday, Joan felt a pain in her left shoulder, which travelled down her arm, finally leaving her left hand numb. Around Christmas 1995, she started dragging her left leg. In 1998, five MRIs (a type of medical imaging) later, came the definitive diagnosis of progressive multiple sclerosis.

IN 1999, HER beloved mother was found to have multiple tumours and died the following year, in Joan's home, aged just 71. Through it all, with MS and a disabled daughter, Joan felt she had nowhere to turn.

"The doctor basically says: 'You have MS, go home and get on with it'." Though vaguely aware of the Multiple Sclerosis Society, she felt she needed to pour whatever energy she had into supporting Merilyn, driving her to piano lessons 16km (10 miles) away and trying to be her "second eye". (Merilyn, playing by ear, is up to piano Grade 5 and has moved successfully into secondary school.)

But Joan knows that she was slow in coming to terms with her own diagnosis. "It was a journey for me. And you're clutching at straws." After all the full and hectic years, there were "suddenly the long days at home, friends were busy . . . I had to dig within myself, strengthen myself".

That lonely, painful phase became a crisis in 2002 when her legs became much weaker and she needed a wheelchair. It was around then that Tess Kennedy, a case worker with the MS Society, got in touch.

They smile fondly at one another. "I remember her first visit well," says Joan. "It was April. And there was something about Tess that day . . . I remember thinking, 'That was a very formidable lady. If anyone can get anything done, it's her'. She was like the knight in shining armour. From day one, she was my advocate."

A few hours with Tess, a qualified medical social worker and mother of an 11-year-old, are enough to confirm it. It's the blend of palpable competence (years of British experience in palliative care and oncology), compassionate juggernaut (the London-Irish bit), and grande dame (the trained soprano, who once beat Lesley Garrett in a college competition) that makes Tess so compelling.

USUALLY, TESS STEPS in at a time when the shock of diagnosis has been barely absorbed, the financial implications are seeping through, and her client is grappling with something as basic as how much, if anything, to tell an employer.

"It's the impact of finances that hits people most," she says. "It also means having to move from all your hopes and dreams, to having to accept that this is for life, that you will not be cured. It's a big loss issue. It's like going through the grieving process."

Tess first walked in on Joan trying to cook dinner, at a time when the tiredness, "the chronic, chronic fatigue that sweeps over you like a wave", in Joan's words, had become almost completely disabling. No one had told Joan how important physiotherapy could be to her mobility, or that she might be able to access home help, or even that the registration tax (a third of the price) could be waived on her specially-adapted vehicle. She has those services now, which means that she can try her one good hand at painting or baking and conserve her energy for Merilyn in the evenings. A lifeline for a woman like Joan is also a lifeline for an entire household, where relationships can suffer unbearable strain.

None of it would have been possible without Tess, Joan's key, her "counselling service", her teeth-gritted advocate, when a major setback last year almost saw Joan being sent to a nursing home.

"Illness can be a lonely journey. I spent years in a sort of an abyss," says Joan. "People needn't go through that. They don't need to be alone."

Half an hour later, Tess is on the road to Monaghan in her trusty estate car. Her lifeline extends to another 130 "active cases" in Cavan and Monaghan. No time to rest.