FACILITATOR Self-Care to Wellness advocate Bernie Hoban.
Bernie Hoban, Westport, talks about her experience with disability and the benefits of a new programme for people coping with long-term health conditions
A huge number of people find themselves living with a disability or a long-term health condition. Their lives are irrevocably altered, and they can face huge changes and challenges. Perhaps their condition affects their mobility, or their mental processes, or their independence or their diet—or some combination of these aspects of life. Aspects that we normally take for granted.
Imagine the frustration, the sadness, the regret, the fear. The loneliness.
Self Care to Wellness is a six-week self-care management programme, available in Mayo, designed to help people with ongoing physical, mental or neurological health conditions develop the skills they need to cope. The ultimate aim is to help course participants become active self-managers of their conditions, and ultimately live happier, healthier lives.
The topics covered include nutrition and exercise methods; managing pain, fatigue and difficult emotions; communicating effectively with family, friends and health-care service providers; problem solving and decision making; setting manageable goals; and managing medications.
The programmes, which involve weekly two-and-a-half hour sessions, are led by facilitators, many of whom use Self-Care to Wellness techniques and skills in their own lives, as they too are living with chronic health conditions or disabilities.
Bernie Hoban is one such facilitator.
A well-known figure in Westport, Bernie Hoban, who once ran Bernie’s High Street Café in the town, has Transverse Myelitis. The debilitating condition first started to affect the spirited 64 year old about 16 years ago, when she was in her late 40s.
“I’d feel my fingers started to numb. Just the tips of my fingers and they’d keep numbing. That was about 2002,” she tells The Mayo News.
Over time, there were other symptoms. “I would trip. I might fall down on the Octagon, say. A couple of times that happened to me, but I didn’t connect that up with the fingers. Finally I went to my doctor … He did a few tests on me a sent me over to Castlebar for scans.”
A year-and-a-half later, after being sent on to Galway, Bernie’s condition was finally diagnosed. “Transverse Myelitis is very similar to MS,” she explains, “except it’s not quite in the brain, it’s on the spinal chord.” As with MS, the myelin sheath is affected, with the result that the messages that the brain sends along the nerves that run down the spine and out to all the different areas of the body get scrambled.
“The message aren’t going through properly, so it would end up that you would trip because your feet didn’t get the message that they were supposed to lift a little higher,” Bernie says.
Another time, Bernie was holding a cup of coffee while chatting to a friend, not aware the cup had tipped and its contents were spilling. The unconscious message to keep the cup upright was not getting through to her hand. “For me, if I’m picking up a cup now, I have make sure I’m thinking about it – I have to say ‘I’m picking up the cup’ – the message has to be there.”
As the condition progressed, Bernie’s life became more and more impacted. “I got to the stage with the tripping that I began to use a stick, and from that I’d use a walker. Finally, with the wheelchair, it was because I wouldn’t even get around the supermarket.”
After some time using a manual wheelchair, Bernie opted for the electric wheelchair she uses today.
“The fatigue that I feel in my body wouldn’t allow me to wheel for very long. So it ended up that I would have to have someone with me to help me manage the chair."
This did not suit Bernie one bit. “I’d be very self reliant … I would miss the independence of even going to a bookshop, for example, and having a look around without having to say ‘Can you push me up further?’ or whatever. So I ended up in this," she says, pointing to her electronic wheelchair.
For Bernie, one of the hardest parts of her new reality was the fact that no one ever spoke to her about her practical needs, about how they would change and about how to go about having them met.
“None of that was spoken about at any point to anybody. I never sat down with anybody, even my neurologist or anything, and just said ‘Where’s this going?’. It never was discussed.” She had to figure it all out herself. And that was on top of the inevitable grief she felt for the loss of everything from privacy to cooking her own food; and for the way in which the relationships she had with the people around her—from family and friends, to caregivers and service providers—were all inevitably changing. “You don’t expect to be in this situation at this stage in your life,” she says simply.
Turning it around
In 2014, Bernie was told about a new programme, Self-Care to Wellness, coming from the HSE. It was originally developed in Stanford University, California, and has been rolled out here in Mayo. She went along to an open day and discussion on its approach and benefits, and was subsequently asked to train to become a facilitator. Impressed by the positive nature of the programme—“It was positive; it was doing something; it was living in the solution rather than living in the problem”—she signed up, and hasn’t looked back.
“The Self Care to Wellness Programme is about helping you take a little responsibility yourself,” Bernie explains, adding that for her, she the ‘self-care’ aspect is balanced by the fact that participants get help from the facilitators and the other people doing the course.
“You’re not just doing this on your own, alone. And that’s one of the benefits of the programme. You are not isolated at home with it. It’s not like ‘Here’s a book on self-care to wellness, see you, get on with it’,” she smiles, adding: “Being in a group of people who are working on trying to live their lives daily with the restrictions that they have in their life, whatever their chronic illness is, is a powerful thing.”
So, what can people expect from the programme? “Well, it’s not like a therapy, or a talking shop. But yet you’ll have people sharing a little bit as they go along,” Bernie explains.
“You don’t focus on talking about the illness. You talk about practical ways of living with your illness, which is why it was attractive to me again. Because I’ve been in say, support groups, as such, or gone to groups, and I wouldn’t feel that healthy after them, not if you’re ‘living in’ your disability, ‘living in’ your illness.
“That doesn’t mean that you don’t have to face your condition, because you have to, you’ve to face it every day as soon as you get up, but on the other hand there’s a way of living with it and whatever the treatment is.”
The programme is non-prescriptive. It focuses instead on encouraging participants to ask themselves ‘What can I do better? What’s not working?’.
“It’s always ‘What can you do?’ ‘How can you deal with it?’. Like for instance we do action planning, so you might decide that you really need to do a bit more exercise – and most people are saying that – so you ask them, what’s manageable for you. And that may not be what’s manageable for somebody else. So it’s your individual programme. That’s the self-care part of it.”
In her own life, Bernie experienced the ‘difficult emotions’ of grief and frustration about how her condition impacted on her ability to cook, to be creative with food, which she had loved dearly. She struggled with the fact that somebody else had ‘taken over the thing that I love doing most’. But by asking her self what she could do to bring a bit of creativity back into her food, even though she’s not able to cook it herself, Bernie realised that she could, say, develop recipes, or go shopping and choose the ingredients herself.
By coming to that realisation, she explains, “I’m now saying that I would like to have a little input, so that I don’t just hand over everything. So it [the programme] can be like that. It moves you into a new place.
“It’s about taking back a bit of control, and about you taking a bit of responsibility too. You kind of relegate responsibility because you have lost the ability to do everything. You suddenly now think ‘Ah sure I can’t do anything’. But this is where you start: What can I do?
“Say someone is dealing with your medication – well why can’t you deal with it? Or why can’t you talk to your doctor? Because somebody else is talking for you maybe.”
‘Something in you shifts’
Every week, participants take on a manageable action plan; something they’d like to do. The next week, when they return to the group, they report how they got on. “If you did it, you feel that much better,” says Bernie, explaining the plans could be anything from going for a walk, taking the dog out or doing your exercises to taking up a new hobby, going to the theatre or meeting a friend for coffee to combat feelings of isolation. “Loneliness is a big one that I have found with a lot of people, especially if they’re on their own,” Bernie reveals.
Ultimately, the Self-Care to Wellness approach all about positivity – finding it, grasping it and applying it. It’s not about dwelling on what’s wrong, it’s about focusing on what’s possible.
“It’s a sensible programme, a practical programme, and it’s not big and it’s not all about therapy. But it helps you not to become your illness, or your disability. And it’s not like you have to over expose yourself, which is really important,” says Bernie. “Then suddenly, after the six weeks, you can say, ‘Well I have started opening up slightly, and now I might open up a little bit more’. You may not get your health back, but you’ll get your spirit back.
“Something in you shifts. It’s that energy within you that comes with connecting with other people. Meeting other people. Just somebody listening and looking.”
Self-Care to Wellness Programmes are run in many locations throughout Mayo, including Westport, Castlebar, Ballina, Belmullet, Knock and Kiltimagh. The next set of programmes are starting in September. For more information on these or any aspect of Self-Care to Wellness, contact programme coordinator Jackie Lynott at 087 7185615, 094 9034980 or firstname.lastname@example.org. The programme is also interested in training up new facilitators, be they former course participants or people who are working in health care.