How did you come to care for your daughter, Chloe?
Nicky: Chloe was in a very serious car accident three years ago while she was on holiday in Canada. She was in the car with my mum and there was a terrible accident. It was on my birthday, so I got a phone call at two o’clock in the morning after being out for the evening to say that Chloe was very seriously injured and my mother was dead.
We were on a plane a few hours later to Vancouver. It was touch and go for the first 48 hours. I never for one moment thought she was going to die. I got very bolshy and very focused. I think it was staying in the moment and being extremely focused that got me through. Her two elder sisters and her father and I never left her for a minute the whole time we were in Canada. We were there for eight weeks. She was unable to move, unable to do anything for herself. We did everything. They couldn’t tell us what she would be able to do, how badly the injuries would impact on her life – just that the injuries were very extensive but that sometimes very bad injuries make very good outcomes and sometimes very small brain injuries make very bad outcomes.
I do remember my darkest moments, when I would think my life was over as I knew it. I couldn’t imagine ever coming for a coffee, or even doing my shopping. I think the best way to cope is to stay focused on the moment because you just can’t go anywhere else in your mind. It’s too horrendous, too traumatic.
I was very lucky in that I have fantastic cousins and a fantastic family. I had fantastic help from friends in Dublin. Everywhere, we were bombarded by people saying prayers, I mean from all different religions. I think you really do feel all this wonderful goodness coming through. The Red Cross in Canada were there to wait for us with a whole pack of stuff. The Jewish community in Canada came with a hot meal to the hospital every night. You couldn’t repay the kindness of people, you couldn’t. I don’t even know who half of them were. And then there was another family who gave us their house up the road. They were going away for 10 days and they lived very near the hospital. They literally gave us the keys and we moved in. The kindness of strangers is really a wonderful thing.
So that’s how I came to be caring for Chloe. I don’t think I would use the word ‘caring’ so much as ‘facilitating’. In the beginning, it was hands-on. I did get her out of the nappies and we did teach her to walk again. We were very proactive. They couldn’t believe us because I just refused to accept anything.
She didn’t really understand what was going on. She didn’t know where she was. She was completely confused. We were trying to coach her all the time because we knew they wouldn’t let her come home until she knew where she was. There was a handover after eight weeks but we did get her up and walking by the time we got her home.
Now it’s a very tricky role because we have to support her and watch her but we have to allow her to be independent. She’s 17 but she does have a brain injury and she does have some memory and processing problems. Her IQ has not changed at all. She’s still as bright as she was but she can make the wrong choices and decisions, so it’s very frightening. You’ve not only got a teenager but you’ve got a teenager with a brain injury who doesn’t look like she’s got a brain injury. It is going to be very challenging in the next couple of years as she moves towards womanhood and wants to be fully independent.
Your Own Health
How has being Chloe’s carer impacted upon your own health, especially in light of having MS?
Nicky: I was lucky; I didn’t have a major attack. I judge everything by how I feel. Tiredness and my ability to manage my own stamina is my biggest challenge. I have to pace myself. It does impinge on my life now, whereas a few years ago it wasn’t quite so bad. I used to do a lot of hillwalking. I don’t anymore but I’m now going to start cycling because you have to do some exercise. And I’m very careful with my diet. I eat a low GL diet. I never start the day without a bowl of porridge, no matter where I am. I have vitamin B12 injections every couple of weeks. So everything for me is to do with energy levels.
Have you ever looked into raw food diets, or adding lots of raw food?
Nicky: A lot of what I eat is raw food. I tend to live on hummus and carrots and raw broccoli and things like that, and cabbage. I don’t think I could eat a healthier diet. And tons and tons of B vitamins, fish oils, cod liver oils, all sorts of oils.
Have there been times when being a carer and a busy working mum have led to your neglecting your own health and well-being?
Nicky: When you have a serious illness you really do have to focus in on it. It almost makes you; it reminds you that you have to slow down and look after yourself. I think I’m healthier now, in a sense, after the MS than I was before. I listen to my own body. If I think there’s something going down that’s not right, I’m there like a flash. But in the meantime, I take a lot of care and I pace myself.
I think you can become too introspective. My way of coping is to project outwards. My focus is on things that are going on around me. Because I’m talking about MS and because I’m thinking about it, my whole arm has gone into a half-paralysed [state]. I’ve got constant pins and needles and problems in my left side but if I’m talking and thinking about it, it’s a hundred times worse. That’s why I have to think outwards rather than inwards. Once I go off to work now it’ll be fine.
So you find that living in the real world helps?
Nicky: I am a great fan of The Power of Now [by] Eckhart Tolle. I go into the Oprah site and listen to him talking. I just focus on looking around me. When I’m walking, I’m looking at the buildings, looking at the doorways. I take a lot of photographs. I do a blog. I’m in a semi-state of denial. That’s how I cope. It’s not that I don’t know I have MS but I kind of pretend a lot of the time that I don’t.
When you’re not focusing on [your symptoms] you don’t feel them as much?
Nicky: I don’t notice them. It’s not that they’re not there. I distract myself; that’s how I deal with it. Sometimes, though, I have what I call ‘a bad MS day’ and it’s usually when the sky is grey – I’m very light-sensitive – and when I’m indoors. When I’m in the sun and in a dry climate, I feel a hundred times better. So the winter to me is a really awful prospect. I have to fight that. And the other thing, I never was depressed before I had MS and I think I fight depression as well. But I don’t know what’s MS and what’s life. I don’t like the idea of dividing it all out and saying ‘this is the MS’ and ‘this is circumstances’ and ‘this is Chloe’ and ‘this is something else’. It’s all one big package.
I was going to ask you how you do it all…
Nicky: It’s called time management and pacing yourself. And I do an awful lot from my computer. There can be times when I’m very tired and pulled in all directions. Sometimes I think I’m doing everything badly but I do my best, you know. That’s it.
I was wondering if you have any advice for our readers, or is it too situation-specific?
Nicky: I would hate to give advice to other carers because I think every single person’s personality is so different. I would be very loathe to give advice, except to be kind to yourself. I think to be kind to yourself would be the best advice of all.
The Future for Brain-Injured Children in Ireland
Is there anything you’d like to add?
Nicky: When Chloe was transferred to the National Rehabilitation Hospital in Dun Laoghaire, it was a terrible shock to be transported from a Canadian rehab hospital specifically for children, where Chloe had her own large room with a spare bed for us and a lounge next door, to Dun Laoghaire, which is an adult hospital with a children’s wing.
Chloe was brought by ambulance from the airport direct to the hospital. In her confusion and distress, she was not aware that she was home. The first week was awful. The six-bed ward she was in had no room for family, so Jessica, her eldest sister, actually slept on the floor under her bed. Chloe refused to eat and constantly asked me why we had put her into a mental hospital.
We negotiated with the staff to allow us to take her home in the evenings and bring her in first thing in the mornings because I was sure that once she realised she was home and could sleep in her own bed, she would relax and be less stressed. So that is what we did and that was the beginning of nine months spent in the National Rehabilitation Hospital, the only hospital in this country that caters for brain-injured children.
The staff are truly excellent but stretched beyond imagination and working in an archaic and totally unsuitable facility. As Chloe progressed, I felt I would like to help the unit in some way and decided to Trek in Brazil, which for me meant a lot of very hard work.
I asked the staff if I raised some money what they would like to do with it. I was keen that it would not be swallowed up. They said they wanted a music therapist and had a wonderful person in mind. I told them I couldn’t promise anything but I would do my best. Now there is a music therapist doing amazing work who is an integral part of the paediatric team, using music to help children reach their therapeutic goals.
The latest research is very positive but there is now a huge need to raise money to keep the service going, as it is completely run through voluntary funding.
I am still actively involved in the hospital and am hoping that a time will come when the children of Ireland who are unlucky enough to sustain brain injury or illness will get the best treatment in a purpose-built children’s rehabilitation hospital and that the music therapy service will continue and grow ( written by Rhoda).