Video interviews for masters project

Video Interview with Nikki

“Hi, my name is Nicky Dalladay, and at the age of 21 I was diagnosed with Multiple Sclerosis. At the time I didn’t really take this on board and what it meant, and I was only just starting my realtionship with my then partner and now husband, our life carried on as normal, we carried on pursuing our hobbies, we were both keen amateur dramatists, we loved appearing on stage, we loved singing, dancing, acting, playing hockey, all sports, just enjoying life, having a great life. David married me and too me on knowing what could possibly happen. I had my eyes firmly covered with rose coloured glasses and believed that nothing was ever going to happen to me because I thought I was going to be one of the lucky ones.

I was wrong. He married me, took me on and life continued for┬ásome years, we carried on pursuing our hobbies and our interests and travel; we both adored travelling so much….later on about the age of 35 I had a hockey injury, I broke a bone in my leg and had to have reconstruction surgery on my knee…..After that I found I couldn’t walk very well…I had to get a walking stick. I went on my journey to get a walking stick on my own, I was so afraid of what was happening to my body, and I would almost say that I was embarrassed at the age of 35 that I would have to use a walking stick…That was more for older people not younger people….I looked like a drunk with it, my gate was becoming a little dubious, I was wobbling….Then it became apparent that I would need to move on from a walking stick as it got harder so the hospital produced a pair of crutches…..It was just my lower half that was really affected….I moved onto the delights of the really old people and had a zimoframe. This was all becoming very frightening, unchartered territory that I and David were about to enter into.

The hospital saw me and said I was an accident waiting to happen so this now meant I would have to go into a wheelchair; and in my early 40’s I went into a wheelchair. And I felt that once I had gone down this route into a wheelchair, I was never going to go back to how I was with a walking stick. So emotionally and mentally this was a phenominally difficult time for me to get to grips and come to terms with what was happening to my body, which was so out of control. I couldn’t embrace being disabled in any way; it wasn’t something that I had ever factored in at all.

I’ve always been an independent woman and did everything for myself and shared my life with my husband. We lived as a couple…but my body was going to strip any form of independence away from me. It had decided how I was going to live my life; and that means having to live my life permanently in a wheelchair, David having to do everything for me, all of a personal nature- he’s the only one who sits me on the toilet, wipes my arse, deals with my period. We live our life as carer/cared for. The man and wife, intimate side of our relationship is gone; it’s had to , theres no way it could continue. Yes my head still works and my heart still works, but my body is pretty useless. I can’t write anymore, I have to drink through a straw, David cuts up my food for me and there are times when I can’t even raise the fork to my mouth.

This to me is not life, it’s not the way I had my life mapped out. Yes I’m prepared to put up woth a little inconvenience, yes I’ve become accustomed to the changes that have happened, because each time a part of my body stops functioning, i liken it to a grieving process. I have to grieve over that part of me that no longer works anymore. It’s a form of bereavement as far as I’m concerned….I have to try and pull myself out of it. But the question is; how long can I continue doing this for? At the moment it’s fine….But my mind wanders to when were older….there are lots of restrictions as to what I can do over the course of the day and to be honest life just gets boring when you cant do anything. You can get up and walk out of this room any time you want , I can’t, I have to just sit here until someone wheels me out of the room, I have no choice.

I have a very strong passion that I believe I should be entitled to live a dignified life as well as have a dignified death, but nobody hears me. Nobody, nobody will hear me, and that upsets me greatly. I don’t feel sorry for myself n any way….I just want what nobody will give me. Yes I would love to able to walk but thats not going to happen , yes I would love to revert back to life as it used to be but that’s not going to happen, is a dignified death an option at the moment? In this country, my birth country- no it’s not….I’m being denied everything…

All I want to do is live my life and die when I choose and it’s my choice. I’m not asking anyone else to make that choice for me. Lots of people are opposed to me talking like this but I would say that it’s because they don’t live with this condition or a condition like it…It’s not until you live with it that you truly know what it’s like. It’s all very well to witness something but until you step inside my body or anyone else’s body, you don’t know what they have to live with; and it’s not a great way to live. I don’t want to die at the moment, that’s a given, but at some point in the future I will and that’s when I want the choice available to me.”


 
 
Video interviews for masters project

Video Interview with Donagh

“I’ve been in a wheelchair since I was 14. I’ve lost every single control over every single muscle and every joint in my body. I cannot talk proper, I cannot think proper, I can’t even eat proper. And no-one else should have the right to decide whether I should live or die, except me, because I’m the only one in my situation, no-one else is. No able bodied person knows. The doctors tell you all the time they understand what it’s like, I never managed to understand how they could figure out what it’s like unless you are in the skin of the person you are talking to”.


 

 
 
Masters Project | A room to Die in

My Masters project looks at the issue of assisted dying. Based on a friend of mine who is terminally ill I have developed a project focusing on the idea of offering control and choice when it comes to the end of life. I have been in contact with the organisation Dignity in Dying and they have put me in contact with other people in similar situations. The main philosophy behind my work is to emphasise the right to choice.
There are so many people with terminal illness that are of sound mind that have no quality of life and are effectively waiting to die. Many of these people have been given approximations of how long they have left and many of these turn out to be wrong especially with improvements in medical technology. The fact of the matter is many of these people feel that they are merely existing as opposed to living. Nicky Dalladay, one of the people I interviewed, has the disability Multiple Schlerosis. She does not want to die right now but would like to have the ability to decide when the right time is. Nicky has had all the control of her own life taken away from her and would like to have the control over the end of her life

My project reached this stage after a long process of investigation. I was initially aiming to offer some sort of improved quality of life to a friend with the degenerative condition Freidriechs Ataxia by means of redesigning his living environment. As the project developed I began to realise that this would merely provide a technically improved environment, rather than a better quality of life. I wanted to do more than this. After speaking with him again I started to think about his dreams and wishes, most of which are sadly never going to be able to happen. I have learnt that disability has a habit of taking over a persons being, disguising the essence of the individual. It can take away all the control, and make people treat you like you are fragile and susceptible to breaking. Sometimes resulting in being overprotected hindering your quality of life even more. The disability in effect becomes the dictator of your existence. One wish he had which I now know many people share is to die on his terms. My project does not in any way offer this option but aims to highlight this issue, to make people consider this situation and the lack of control that people feel about there own lives. Who should have the right to decide the end of somebody elses life. As said by Nicky Dalladay “In our society we will put an animal to sleep to end their pain and suffering, we need to show the same compassion to those people who are suffering at the end of their lives, and give them a choice to be allowed to die should their suffering become unbearable to them.”