I have so many ideas buzzing around my head for future blog posts, but as yet no specific aim or objective. This blog, at present, lacks a specific purpose and serves no function other than to allow me the space to vent. However, in time I hope that I may also be able to advise others in a similar position. By this I mean I endeavour to help, support and share information with others living with muscular dystrophy. I’m not in any way professionally qualified to counsel on this topic. All I have to offer is my own personal experience, that being almost thirty years with me, myself and Ullrich congenital muscular dystrophy. I will get to the ins and outs of how this condition affects me at a later date, but first I feel I should explain my reasoning behind the naming of my blog.
So, why ‘Life on the slow lane’? Well first of all, I don’t walk. At all. I roll. Let me clarify, I’m not a skateboarder, a rollerblader, a cyclist or a car enthusiast. I’m a wheelchair user. My chair of choice is the Quantum 600 powerchair by Pride Mobility. It allows me to go wherever a 16+ stone wheelchair can go. But it can only move at a maximum velocity of 5mph. This limited, ambling pace can be considered a metaphor for my life.
I regard myself to be living life on the slow lane as everything I do takes at least twice as long as it would an able bodied person. Being non ambulant does not lend itself to speed or spontaneity. Every task, however insubstantial, requires careful consideration, support and time. From washing and dressing, to eating and travelling, every activity depletes both time and my meagre energy reserves.
I would love to be one of those carefree, go with the flow types. You know the kind; those people who are seemingly fazed by nothing, never forward plan and simply take life as it comes. But I can’t. I see them cruising along, living life in the fast lane, taking risks and seeking adventures unknown. I see them fly by me as I trundle along in my slow lane.
My body is weak and fragile, and consequently I can’t afford to be daring or gamble with my health. For instance, catching a cold for your average Joe is an annoyance yes, but it passes after a few days and it isn’t a cause for concern. If I catch a cold the consequences are severe and potentially life-threatening. Sounds dramatic doesn’t it! But because my condition affects my respiratory function, a simple viral infection can and has on multiple occasions led to complications including pneumonia, pleurisy and pneumothorax (collapsed lung). Many days and nights have been spent on hospital wards and in ICU; time seeming to slow with every tick of the clock. You know how they say time flies when you’re having fun? Well it drags like Hell when your sole focus in life is to just keep breathing.
My disability has effectively prevented me from flooring the accelerator pedal and pursuing my wildest childhood dreams. I’ll never be able to book a flight on the spur of the moment, jump on a plane and jet off to some mysterious destination with only myself for company. I’ll never experience the thrill of running to the edge of an exotic waterfall, to then dive into its frothy waters without a care in the world. I’ll never have children and since UCMD is progressive, I won’t reach old age. On the contrary, my life is slow, monotonous, routine and unexciting.
Don’t get me wrong, by no means am I saying that being confined to a wheelchair is not synonymous with leading a happy, fulfilling lifestyle. I can only speak from personal experience and how my condition has impacted on me. There are so many things I desire to do but cannot. Sometimes I get frustrated and wish I could get up & go for a country walk to let off steam. It would be such a relief to grab a quick shower whenever I want and not at a regimented time. I will lie awake until 3 o’clock in the morning, wishing I could drag myself out of bed to make a midnight snack. But I can’t because I’m stuck on that slow lane.
This is the card I’ve been dealt and that’s ok; I’ve adapted and learned to live within my means. I do what I can and I enjoy what I do. I have the wackiest and most wonderful family anyone could hope for, and an eclectic band of friends! I appreciate that this is more fortune than a great deal of others ever experience, and for this I’m thankful. My loved ones more than make up for missing out on living life in the fast lane.