Beacon a source of hope

The philosophy at The Beacon in Napier is simple and sincere.

"Together, with a shared sense of hope and mutual support, people can relax, have fun and revitalise heart, soul and spirit."

The Beacon is a Presbyterian Support-facilitated community under the Realpeople umbrella, which provides a bright oasis of respite and activities for younger people with chronic, degenerative neurological conditions such as multiple sclerosis, motor neurone disease and Parkinson's.

"It is a place of encouragement," manager Lynne Parsons said.

A place where people can meet and talk, mentor each other and spend time in an environment where others understand exactly what they are going through.

"They are the experts because they are living this every day of their lives," Mrs Parsons said.

"They can talk honestly to each other. There is laughter and there are tears."

The Beacon becomes home for one day a week for those involved, and on any day up to 40 people arrive to enjoy each other's company and relax.

One of those people is Rachael Murphy, who moved from Napier to Central Hawke's Bay about three years ago.

She attends once a fortnight. Mrs Parsons says: "She has a real vibrancy about her, and when she comes here it is her day; her time."

Rachael is a young mother of two who was diagnosed with multiple sclerosis seven years ago.

She had a promising teaching career ahead and big plans.

But she has strong personal resolve, and it is strengthened by the support she gets from Realpeople at The Beacon.

• In her own words, this is Rachael's story:

Having a plan doesn't stop life from getting in the way and throwing you off course.

I had a degree, I had a teaching diploma. I had a loving and supportive partner. We had big plans for travel and also a lot of growing up to do.

The diagnosis of multiple sclerosis at 24 made me afraid to make plans for the weekend let alone get my life back on track.

As we reeled from the black cloud casting a shadow over our future, we were given more life-changing news. We expected the pitter-patter of little feet. Needless to say the travel is yet to happen but the growing up part certainly did.

Our loved ones were so concerned for us. We were fumbling around trying to come to terms with the double shock. I started to have doubts and second guess myself. How can I possibly lead a normal life now? Should I be allowed to lead a normal life now? What is a normal life anyway?

I felt absolute terror about the future which had been so bright. Saying it isn't fair doesn't make you feel better or change anything.

Having a baby when you have MS is like running the gauntlet. A multitude of things can go wrong after the birth. I was not immune, I struggled with relapses and a crippling fear that in the future I may not be able to care for our perfect baby.

It was my Plunket nurse who put me in touch with The Beacon. Her nephew who also had MS attended and she could tell it was what I needed. I am thankful.

The Beacon is a facility for people with neurological conditions, perched atop Napier hill with therapeutic views, people and activities. You couldn't get a more perfect name for what The Beacon is to me. A light in dark and stormy times, a glimmer of hope, the promise that I could still be me. What person in their twenties isn't trying to forge an identity for themselves?

The wonderful people at the Beacon, both staff and clients, have supported me and my family through thick and thin since I first walked in the door nearly eight years ago. The culture of the place supports and nurtures people through creative projects. The homely environment, the act of sharing a meal with these people each week makes The Beacon a kind of home away from home.

The wisdom of company who knew what I was going through gave me the courage to try again. To seek part time work despite disadvantages. To make plans for the future even if they go awry. To continue writing. To celebrate the effort if things don't work out. To expand my family if that's what I wanted, and I did.

I could have ended up with a monumental chip on my shoulder if I concentrated on the bad cards I'd been dealt. It may sound funny, but MS has given me a few opportunities. Time laid up has been time to write and I have had the absolute pleasure of being able to stay at home with both of our beautiful babies.

The decision to have another baby was received with mixed reactions. But it's not against the law. I knew what I was in for and despite that, I wanted to go ahead.

Once you're labelled disabled, diseased or disadvantaged, it can feel like the simplest of decisions aren't yours anymore.

But the truth is that risks exist for the healthy and the sick, young and old alike. In fact, life is a risk, a gamble, and no one can predict what will happen."

Multiple sclerosis is an auto-immune disease of the central nervous system affecting the brain stem and spinal cord. Symptoms of MS vary greatly among individuals. It can be very debilitating, affecting mobility, vision and fine motor skills. MS often strikes in the prime of life. Little is known about the cause of MS. There is currently no cure.

All donations will be used by Presbyterian Support East Coast for Realpeople services or the Realpeople@rowan cottage development."