I have been directed affected by muscular dystrophy, It was not something I knew much about, never had any reason to. I had worked with children and young people with disabilities in my twenties as a youth worker, it was something I was put forward for an initially did not think it was something I would be good at, but to be honest it was and till this day some of the most enjoyable work I have done in this field, Little did I know that this experience would serve me well a number of years later.
My sister Emma is 5 years younger then me, her birthday is a week earlier than mine, I even got to name her, I think I may of had a friend at the time called Emma so I guess we have had a special connection from day one. She was the cutest thing, and naturally strong we have a quite muscular gene in the family and she was always very athletic and had the most wonderfully defined arms.
My brother Daniel was the same we used to call him Mr. T, he loved to show how strong he was and would help mum carry shopping up four flights of stairs even though he was tiny, he would insist on heaving up bags of sugar and cans of beans, we were always amazed at his strength. Emma and Dan are number 4 and 5 out of the seven of us, Dan is younger than Emma by about 2 years. There was no sign, no sign in their childhood that they were carrying a secret time bomb that would rear its ugly head and render them disabled in their adulthood.
They were both just cute, happy kid's with great natures and I have happy memories of them, I loved coming from a big family and having a heap of brothers and sisters, there was always someone to play with, joke with fight with, you were never alone, in fact I used to have to hide in the bathroom or under my bed for a little peace when needed, but 99 percent of the time I loved being surrounded by my siblings and in fact their are times as an adult I miss that kiddy closeness, where you saw each other everyday and were constantly in and out of each others pockets.
They were both just cute, happy kid's with great natures and I have happy memories of them, I loved coming from a big family and having a heap of brothers and sisters, there was always someone to play with, joke with fight with, you were never alone, in fact I used to have to hide in the bathroom or under my bed for a little peace when needed, but 99 percent of the time I loved being surrounded by my siblings and in fact their are times as an adult I miss that kiddy closeness, where you saw each other everyday and were constantly in and out of each others pockets.
Muscular Dystrophy comes in much different forms and to be honest is a generic term to include conditions which affect the muscles, there’s one type Duchene that is only seen in boys and usually they die sometime in their teens. The type Emma and Dan have is not a killer but what is does is slowly take away the strength in your muscles, so you lose the ability to walk, it affects the outer limbs, and core strength, so the hands and arms become weak as well so the ability to support yourself is lost and holding things even like a cup or cutlery becomes a problem.
I have lived with Emma for coming up to 6 and a half years, now, before that I lived by myself or flat shared, just doing what most twenty something years olds do, raving, living life, having fun, finding my way. Emma was still walking unaided when we moved into the house back then, yes she was having problems which is why she had to move from our mums, there was four flights of concrete steps just to get to the house and she wasn't coping very well, it was obvious that she would soon not be able to walk up those stairs at all.
Now wind the clock forward 6 years and a half years, she's gone from using a stick to a crutch, to two crutches, to now being in a wheel chair anytime we are out of the house, in the house she wheels herself around on her computer chair, only because the house is not big enough to use a wheelchair. .
I can't express how hard it's been in that time to watch her deterioration Muscular Dystrophy is cruel, I used to be able to take her out in my car but I can't do that anymore, find it too hard to lift her up and out of her wheelchair get her into the vehicle and then out again. We've had too many lucky escapes, too many times when she has almost fallen, and I have not been strong enough to carry her full weight anymore, she's not big at all, but with no muscle control holding her is like holding sack of potatoes. There have been many times when she has fallen and it's only due to the grace of God I've been able to lift her up, or a strong male stragner has come to our rescue,so now we try and limit any possible scenarios where she may fall, so that means no more car.
I have watched her hands become weaker and weaker and worry about her cooking or even making a cup of tea, she burns herself regularly. I have watched her once muscular legs become slack and almost useless and her arms which I once admired lose much of their natural definition.
Now we have to move house again, she can no longer get herself out of the stair lift, can no longer use the bathroom safely, can no longer do so many things that most of us take for granted, I won't go into detail about all of them, but I am sure you can guess. This house is now redundant unable to meet her needs. It's a shame it's a great area that we live in, you know how hard it is to find good neighbors and our neighbors have been great, but needs must and one thing I always say about life the sooner you accept change the better the change will be.
My brother Dan is also struggling with a condition which is slowly taking away his independence, but I am also very proud of him, he is in his second year at Southampton University, I know he falls, his legs give way with no warning and on windy days is blown about the wind,he struggles with stairs and he like Emma finds everyday tasks hard to do, but he has stuck it out, and managed to do all he can to get through the second year of his degree and I admire him deeply. In fact I greatly admire the two of them I don't think I could be as gracious as they are, I think I would be bitter and angry at the world and demanding "Why me." I do not live with Dan so I do not know his every day life but since I know what this condition does, I know it cannot be easy.
Where does all of this fit into my running, well I feel lucky just to be able to run, the fact that I have the ability to put one foot in front of the other, that I can run and feel my locks blowing in the wind and the ground under my feet, from concrete to grass. The first year I ran the London Marathon 2009 I raised money for the Muscular Dystrophy campaign, and this year I am launching a campaign called “RUNNING FOR WHEELS” trying to raise enough money to get Emma a electric wheelchair as she is no longer strong enough to push herself in a manual one.
This is not the only reason I run, running keeps me sane, I talk, reason, laugh and even cry when I run as a carer I need that space that me time, time when I only worry about myself and nothing else, and it is important that I have moments like that, as a performer and as a workshop leader I am always on show, always giving out, running is an internal activity for me. Some people find that hard to understand why someone would run for no reason but I am running for a reason, me.
I loved to dance when I was younger and dance professionally right up to my late twenties so to be honest was highly active, running has given me that back, I am as passionate about running as I was about dance, I think I just like to move, fling myself around, push my body to the limits, I forgot that for a few years, allowed myself to gain weight and lose that love of physicality that had always been a big part of my character, well I've found it again.
I loved to dance when I was younger and dance professionally right up to my late twenties so to be honest was highly active, running has given me that back, I am as passionate about running as I was about dance, I think I just like to move, fling myself around, push my body to the limits, I forgot that for a few years, allowed myself to gain weight and lose that love of physicality that had always been a big part of my character, well I've found it again.
Running also allows me to stop worrying and instead fight in a very physical and rewarding way, it's hard to think of anything else when your struggling to breathe. I have to focus, I have to plan, I do have not time or want to concern myself with anything outside of that.
Yes marathons are extreme but that’s me, extreme, I don’t know how to do things by half, I'm an all or nothing girl, I'm planning to run the London marathon again next year and from now until October planning to run at least one half marathon a month, some months even two. I know crazy but what can I say I’m addicted to running, it makes me feel great physically and emotionally I have also become more and more aware of how important it is for me to take care of myself, how lucky I am to be healthy. I know at least two other young women in their early 30’s who are wheelchairs, and a number of others around me who are young but have been struck down by various illnesses, I feel blessed that I am strong, and healthy and will try and run a marathon at least once a year until I cannot run anymore.
I have a lot of work to do I am nowhere near as fit as I would like to be, but this is a journey, not a race. The fact that my brother and sister cannot run also motivates me, and I want to motivate others to run as well. My goal is not to be a size 8 but work towards a healthy size 12, and work with the natural genetic muscularity that runs in my family. I am also aware that I need to be fit and strong to help Emma and Dan, that the stronger I am the more of a help I can be and the less likely I am to hurt myself or them in the process.
Those of us who have been blessed with healthy bodies should use them, don’t worry If you run and you run slow, don’t worry if grannies are passing you in the streets, plenty of them pass me in races and I take it in my stride this is my journey. Yes I hope to get faster, finish a marathon in 4 and a half hours, run a 5k in under 25 minutes or a 10k in under 55, but there is no rush, God willing I have a lifetime of running ahead of me, and seeing so many older people in races I take part in, I know time is on my side.
I run in defiance of Muscular Dystrophy, F***K Muscular Dystrophy, I am one of seven, you may have took two of us out, but there are 5 healthy ones left, and every time I run, I defy you, I reject you and I triumph over you.
Running allows me to move forward into the future knowing that troubled, scary and uncertain times are to come, but also knowing that I have something that will help me not only to cope but to excel, something that will soothe the fear and calm the anxiousness, something that will allow me to just be me, not a carer, not a performer, not a sister,not a friend, not a daughter, not the reliable, strong and dependable person everyone sees me as, but just a girl fighting against the elements, pushing through the I can't and embracing the I can's, so if anyone is still wondering why I run there you go, without running I would not be the person that I am.
