Recently I went to see a Maxillofacial Specialist about my jaw dislocating. Before every appointment I have been getting extremely nervous, but this was the worst one by far as I knew that the news wasn’t going to be good.
Sitting in the examination chair, I explained what happens to my jaw when it dislocates and how I get it back into place. The doctor had a feel around my jaw line before asking me to open and close my mouth repeatedly. He explained to me briefly how the jaw works normally before describing what was happening to mine. Apparently my ligaments and cartilage are stretched and that surgery is required to fix this, by either taking away bone or making dislocation harder my increasing the size of the bone already there. Wherever possible I shoot down the idea of surgery before I start to get upset, I’m determined to stay out of hospital beds and theatre until I really need to. If I felt my quality of life would be better, then I’d have no option, but I don’t feel that I’m at this stage yet. My jaw doesn’t cause me a great deal of pain and if it does, which isn’t often, it doesn’t last long. Surgery is a different ball game that I’m not ready for just now.
About every five or six months I attend a MND clinic which is one of the most nerve-wracking experiences of my life, the only way I can describe it is like being back in primary school and being called into the Head Teacher’soffice with all other teachers sitting around for an interrogation. The Neurologist, MND Specialist, Occupational Therapist, Speech and Language Therapist and Physiotherapist sit in a horseshoe formation with my Mum and me sitting in the gap. It starts off with routine questions about how I’m sleeping, my symptoms and if there deteriorating or stable, any numbness and my personality changes. During the session I’m constantly wondering whether my answers are correct or if they’ve understood what I’ve said. They never give anything away with their facial expressions, which is infuriating! Even a confused expression would be a blessing! I’m so happy once I’m able to leave because I finally feel relaxed and not under interrogation.
I kept thinking that it was my age that made the MND Clinic sonerve-wracking, but then I’d tell myself that it’s not as if I’ve not had friendships with people older than myself before. I get on with my friends’ parents and I spend more time with them during term time than I do with my friends, as they’re at University. I’ve always been one of the youngest membersof staff at work and I’ve gotten on well with all of my other colleagues. After hours of thinking about why I felt so intimated by these meetings, it finally clicked. It wasn’t due to my age at all, but that they were all strangers. If the meetings were held with my regular health professionals, with whom I have weekly contact, then it wouldn’t be so daunting, as I’ve sat down with them and talked about other things than just my MND. It’s hard revealing personal information on the spot to strangers; imagine five strangers asking you about your sex life… well that’s the best way to describe it!
However, sometimes it is easy talking to strangers about my condition, as they either know about the condition all too well, or don’t have a clue what it is. When I mention to people that I have MND there’s always a few seconds of awkwardness, where I hold my breath and the world seems to pause while I wait for the 50/50 response of either: A) “I’m sorry to hear that my ___had it, you’re very young to have the condition” or, B) “Oh, what is that?”. The first of the two is my preferred response, as at least they have an idea of what I’m going through, but it also saddens me as they’ve had to go through this terrible ordeal too. The second option takes the conversation down an often awkward path, as I explain what it is then, judging by there facial expression, I either change the subject or wait for further questions to answer.
It’s easier for me to talk about my illness to someone who didn’t know me before my diagnosis, than someone who did. Before my friends get offended, let me explain why! From a young age I was very active. I took part in football, hockey, swimming and the casual distance run from time to time. When I was younger if I got angry or upset I used to put on my running shoes and run up to the top of a field near my house to give myself space to calm down. At sixteen I got myself a waitressing job at Baxter’s, which I would cycle to and from when my parents couldn’t take me in at weekends or during the holidays. The point I’m trying to put across, is that exercise was never difficult or a burden for me, it came naturally and I loved it. Now I find it difficult to walk and if I don’t concentrate on lifting each foot I’ll fall over, especially when I’m tired. My friends and family will remember the able-bodied side of me and how I was before the disease started to affect me. They will remember the loopy side ofme, the carefree teenager who worked hard, was always smiling and cackled when I laughed. The fact that MND will take that all away scares me, I can’t even being to think what that will be like to watch, knowing you can’t do anything. I know some of my friends can’t even bare to talk about it and, as a result I’ve seen already how it’s affecting my loved ones and it’s only just started. A stranger doesn’t know that part of me, they haven’t witnessed the change that has happened so far, and they haven’t watched me lose part of myself… if that makes sense.
‘The Sunday Post’ recently wrote an article about me which said: “Lucy had just been handed a death sentence.” I do understand that journalism is often dramatic for effect and,to be honest, if I was a journalist I probably would’ve written the same thing. However, one of the things I can’t stand is MND being referred to as a death sentence. To me it makes it sound as if I’ve done something wrong and MND is my punishment. ‘Death sentence’ also gives the image of living in a prison cell for the rest of my life, which isn’t true! Since being diagnosed I have done so many things that some people will never get to do in their lifetime, you only need to look at my ‘Just-Giving’ page to see that. I suppose that in the far away future I may well be locked within my own body, but even then it’ll never be a death sentence! I’ll have my family, friends and health professionals around me! I of all people know what it’s like to have MND, the bad times are hard, frustrating and incredibly difficult, but the last thing I want is for people to have such a negative view on this illness to think that it’s as bad as a death sentence. Everyone knows that life is what you make; well MND is what you make it!
