“Tolerance is like an invisible pain that gives me energy and hope. It makes me feel strong. I feel I’m strong-willed. Patience is also very important, it helps to ground me. Disability can cause a sense of hopelessness but I deal with it day by day. I need to and like to create my own positivity. Hope is very important too. There is always hope. If there is no hope there is no future. It’s the only way forward. There is an air of gentleness about hope. I exaggerate the hope I have in order to make life a little easier. I wasn’t disturbed by cerebral palsy, I could manage but with the onset of multiple sclerosis I became confined to a wheelchair full time and life became more difficult. I’m determined to remain hopeful.”
ONCE in a blue moon as a journalist you have the privilege of meeting somebody who is truly inspirational. Someone who makes you question so much and puts a lot in perspective, whose words and expressions are nothing short of powerful. In many ways, things change after meeting someone like that. I met a man like that this week in Donnacha Rynne.
It’s hard to describe Donnacha, because to tell it in the form of what you see when you first meet Donnacha isn’t accurate and it leaves out what kind of a person he really is.
But for the purpose of setting the backdrop to Donnacha’s remarkable story of tolerance, endurance and patience, here goes. Donnacha Rynne is 40. He has cerebral palsy and for almost 20 years he has had multiple sclerosis, which has become progressively worse over the years, to the extent that he is now confined to a wheelchair and can do very little for himself. It’s shocking and unfair for someone to have to live like that but Donnacha doesn’t want anyone’s sympathy. He wants them to hear his voice from within and treat him like a man – not like a person with a disability or a condition – he wants to be seen as someone with a personality, a sense of humour and a brain that very actively works.
To try to get that message across, Donnacha has expressed his thoughts through a book, Being Donnacha, which allows everyone a glance inside his head. His mother, Anne Rynne, explained that the idea for Donnacha to write an account of his life came about in a conversation between himself and his uncle Barry (Luka Bloom). “They were talking about how busy people’s lives are and the pace of life for people. He said to Barry that he just wished people would embrace the ‘nowness’ of life. That’s another great phrase of Donnacha’s. Barry said to us that there was a book in Donnacha and we all agreed that the only way it could be done was to engage someone Donnacha really trusted, a dear friend, to talk to him over a period of time and to note down their conversations and compile them for a book, which would be a voice for the voiceless,” she said.
Anne and the family decided that the right person for the task would be their close family friend, Tom Prendergast, an artist, because he has a particularly close friendship with Donnacha. “We all knew that Tom and Donnacha really enjoy each other’s company and are interested in the other’s thoughts,” Anne added.
So for the next two years, the pair had hours of conversations, which brought about lots of laughs, tears, breakthroughs and frustrations. Being Donnacha, or at least the first part of it, is an account of these conversations. “Donnacha wants people who read this book to get a sense of who he is and what it’s like for him living alone, confined to a wheelchair,” Anne explained.
She told a little of Donnacha’s life story to date, with Donnacha quick to interject, adding bits along the way. “He was born on June 10, 1970, a twin of Niall, to me and my husband Davoc. He has two other brothers Davóg, the eldest, and Turlough, the youngest and one sister, Áine. When Donnacha was a small child we lived in County Kildare, before moving to Spanish Point when he was seven. Donnacha was born with mild cerebral palsy, as a result of brain damage caused by a lack of oxygen to his brain during the birth. In his 20s, he developed multiple sclerosis which, together, have confined him to a wheelchair for a number of years,” she said.
She said they didn’t know there was any problem until he was eight months old. “He wasn’t doing what babies usually do around that stage. Developmentally he wasn’t progressing as a baby should. Niall was starting to move around and react much more to us and Donnacha wasn’t. He was put through lots of tests and he was found to have cerebral palsy and over the next few years ,he had lots of tests and treatment and they were a pain in the neck for him. He had some spasticity in his hands and in his legs. We were actually told that he would never walk, that he wouldn’t be able for school and would end up in an institution. That was very early on. They were painting the worst-case scenario but we weren’t having any of it. Myself and Davoc decided from an early stage that we would treat him as a normal child and bring him up as our other children. We were very clear on that,” she explained.
As a child, Donnacha saw various different doctors, therapists and even a psychologist but Anne said that he hated going to them and hated being asked what he felt were stupid questions. “He found that a lot of the therapists, psychologists and so on were patronising to him and he has always hated that. I can remember a psychologist telling me that my son was dull, that was when he was only seven years old. I went ballistic and I read him the riot act. Dull is one word that anyone who has any knowledge or understanding of Donnacha would ever use to describe him. Donnacha has always been an amazing lad with a very animated personality and strong presence. So we decided from then on that there’d be no more psychologists or any kind of intervention other than what was completely necessary for Donnacha. Enough was enough and we hated him being made feel like he was under scrutiny.”
Anne and Davoc made a conscious decision to send Donnacha to mainstream school, with his brother Niall in the same class in Miltown National School. “School was a real struggle for Donnacha. It was tough,” Anne recalled.
Donnacha added, “School was dreadful. Now, maybe that’s not the right word, because it wasn’t dreadful. School itself was grand. But in saying that there was very little company for me, apart from Niall. I had no friends. They didn’t understand.” Anne said that because Donnacha was different from other kids, it was hard for him. “Children can be cruel. Niall and his other brothers and his sister looked after him. He did all of the subjects. At that stage he was walking, talking and to most people it wasn’t clear that he had cerebral palsy,” she explained.
In his book, Donnacha talks more about his schooldays. “I didn’t have many friends growing up. I was aware that I was different from other kids so I kept my distance. I didn’t care for school very much, I found it difficult and I didn’t receive any preferential treatment. I liked Irish. I played games but not much. I was also made fun of on occasion but I acknowledged that this was only out of ignorance and fear. I wanted to be like my twin Niall, who could do all the things I couldn’t do.”
After finishing primary school at the age of 12, he went up to his Auntie Brigid in Prosperous, County Kildare, for the summer.
“At the end of the summer I said to him it was time to come home so we’d get his uniform sorted to go on to secondary school but he was having none of it. He just said he wasn’t coming back to school at home. He didn’t want to go to school with Niall any more and he wanted to go it alone. I kept telling him he’d have to come back, but he kept saying ‘I’m not coming home Ma. I really need to get away from Niall’. He said it was no reflection on Niall but that he wanted to be his own man. So, Davoc and I talked about it and just thought that it was such a courageous thing for a child, particularly in his situation, to do. We said if he was feeling like that we should do what he felt he wanted and we would see how he got on. He has always been an independent soul. So he stayed with Brigid in Prosperous for three years and went to the local technical school, St Farnan’s. Again it was very difficult for him. He was bullied a lot.” “I was,” said Donnacha. He spent three years in secondary school and Anne said that he struggled all the way to keep up, but he tried hard. “After that he spent some time with his Uncle Christy (Moore) and his wife Val in Dublin. At that stage Donnacha was about 16. Christy was very concerned about him and reckoned he needed a bit of direction. Donnacha had decided he didn’t want to stay in school – he wasn’t happy in school, and the only thing he really liked a bit of was Irish.”
So his parents decided to give him an education that they could help him with themselves. “We rented a flat in Galway. I stayed there during the week with him and we got him swimming lessons, enrolled him in yoga classes and yoga actually turned his life around. Yoga was absolutely fantastic for him – in therapeutic ways, every way,” Anne commented.
One of Donnacha’s poems in the book is even about how much he loves yoga. “Sitting in the Clinic, across the formica table, Beauty. Room cold, dark, enclosed, Christ let me out. Tense, more tense Unnecessary bricks and blocks, cards and stupid questions Stop, let me out. But now I am becoming free, No clenched fists, becoming free, Slow, Breathing, Controlling, Bending and folding, Yoga.”
Anne described what they did with him in Galway during that period as giving him life-coping skills, “like how to pay your bills, doing your shopping, cooking, all those kind of things important for an adult to do everyday”.
When all of this was going on, Donnacha had become very interested in the politics of disability. “He had got involved with Dermot Hayes and Ann Marie Flanagan, Declan Considine, Michael Neylon. He’s actually one of the founding members of the Disabled Persons of Clare. He then did six months of a two-year course in Shiatsu massage in Kerry. He was brilliant at it. He had a great pair of hands. He was actually learning how to give a massage. He loved the massage part but he found the theory extremely difficult. He had magic hands. It was something he tried,” Anne remarked.
Anne continued, “Then he got a job working as a personal assistant in the Centre for Independent Living in Dublin, working with people in wheelchairs, which is ironic, and he moved to Dublin, which was a big step. He was up there for a couple of months. It transpired anyway that he wasn’t really able for the job. I got a phone call from one of our good friends one day and we found out after that that he wasn’t physically able for Dublin. He didn’t think Donnacha was doing too well .He had spotted him in O’Connell Street one day trying to cross the street and he couldn’t manage it. He found Dublin very very difficult. There was a big difference for him coping in Dublin and coping back here or in other places. He was living with family friends. Because he couldn’t manage some of the basic things like that or he’d act a bit differently to others, people thought he was drunk. He went into a pub one day and asked for a bottle of water and they threw him out, because they thought he was drunk. Donnacha found those things hard. People didn’t understand,” she continued.
“After considering these difficulties, we got an appointment with a neurologist in St James’s Hospital but he couldn’t find anything wrong other than the fact that he had cerebral palsy.”
After that, Donnacha went back to Spanish Point to live with his family and helped them in the hostel they had there. “Donnacha was very good at that kind of thing in the hostel and enjoyed it. But then he kept falling, more and more. We went back up to St James’s and a number of tests were done, including a lumber puncture. I can remember Donnacha asking the staff what they were doing it for, what they were looking for, and they told him bacteria, or a virus, or multiple sclerosis. When I heard the words multiple sclerosis, my heart missed a beat. He was diagnosed with MS on October 10, 1996. There are three forms of MS. One where you get symptoms and have it for the rest of your life but it doesn’t really effect your life that much. Then there’s MS that comes and goes and then there’s progressive MS, which is what Donnacha has. It effects the nervous system. The signals get all mixed up. It’s very unusual for someone with CP to develop MS. It’s been tough old going for Donnacha.”
Anne admitted that was when the real challenge began. “Really and truly. He has deteriorated significantly due to MS over the years and Donnacha hasn’t really ever got a break from MS, as some people do. He has the courage of 100 lions. He is the most wonderful person to look after. I am very proud to be his mother.”
Up to a few years ago, Donnacha could still do quite a lot for himself and wasn’t totally wheelchair bound. He became more dependent on the wheelchair over time as the MS deteriorated and had an electric wheelchair for some time. “He had an electric wheelchair for a good time and that gave him more independence. For safety reasons, he couldn’t have it anymore because he was a lunatic driver,” his mother laughed.
Nowadays, he has a manual chair, which Donnacha feels restricts him. “I liked having my electric chair because it gave me freedom and independence. I don’t like the manual chair so much. As things started to disimprove, I asked myself, what’s this about now? I was prepared to embrace the situation as it disimproved and am prepared if it worsens. I didn’t realise the seriousness of multiple sclerosis when I was first diagnosed. My mother took it worse than me. I saw it as a test and I still do. I just have to keep telling myself that, even though things are bad, they could be worse.”
Anne wanted to emphasise and help people to understand that life has imposed changes on Donnacha but he still remains the same inside.
“Donnacha still remains the same in his spirit and it’s important that people understand that. He is still our Donnacha. People sometimes forget that. People have to read the book to understand Donnacha. I say that the book is a voice for the voiceless, because he tells it like it is. He is very insightful,” she said.
Donnacha wants people to see him as a person with a mind and thoughts and needs. He is disappointed that some people are nervous around him and feels his life is missing something because of the absence of people, other than those very close to him. In his own words from the book, “I understand that some people are uncomfortable around disabled people but I wish they weren’t. We’re not so bad. I used to go out for a drink but not anymore. I enjoy going to Ping’s for coffee, and I sometimes meet people there. Lots of people know me in Miltown but I wish more would come to visit. I understand that people have busy lives but it’s not okay. It can be very lonely. I need to be distracted from myself. I recognise that I’m not the only disabled person with these problems. I don’t involve myself with other disabled people and I’m not sure why. When my carers are gone, a whole lot of nothing happens, to get from one moment to the next just grinning and bearing the situation. There is no joy in it. It feels empty. It feels as though there is always something missing from my life.”
For Donnacha, his book might fill a little bit of that emptiness and better help others to understand him and others who feel voiceless. That’s what he said he wants, for people to read his book and to understand it, or at least to.
Being Donnacha will be launched by storyteller, actor, musician and playwright Little John Nee in the Community Hall in Miltown Malbay between 3pm and 5pm on September 25 and there will be a ‘bit of a party’ Anne said, to celebrate this achievement. “It’s given Donnacha hope and definitely brought more smiles to his face. We hope it will provoke thoughts for many others too,” she said.
For now, the book is available from Anne or any of the Rynne Family on 087 9192600 or online at http://beingdonnacha.tumblr.com. All the design work was done by his brother, Turlough. The family hope that the proceeds of the book sales will cover the costs.
They have only published 500 copies but given the nature of the book, the quality of writing and insight it gives, it’s hard not to see them needing to publish many more.