Walking the line

It's been 12 months near as dammit since I made a totally irrevocable decision with regards to my life. It was May last year that I took the incredibly big plunge & handed in my notice for my driving job. I don't consider myself unemployed though. I have become a full time carer for my darling wife Judith, who now has Motor Neuron Disease in the form of Pseudo Bulbar Palsey. It has & still does take a lot of getting used to. Its not easy not hearing her say, "I love you" any more. Its not easy seeing someone who loves embroidery & patchwork not able to do her own bra strap up any more. & it's not easy seeing someone who used to be able to haul in a 5 lb snapper have to use both hands to lift 2 liters of milk.

There are a lot of things that aren't easy about it. Some people seem to think that because she can't speak, she can't hear & is mentally impaired as well & I include some health care professionals here. Early on in our voyage down our particular path, we had a well meaning spiritually inclined friend say to her, "oooh, spirit must want you really badly to do something like that to you.." personally, my pet dislikes are, "oooh, I don't know how you cope." Well, I got news for you. I don't know how I cope either. "Ooooh, I've been through that & I know what you have ahead & its not easy." I know that, but then again neither is bringing up children easy, but you grow into it. You have 9 months to get used to this amorphous expanding lump that slowly but subtely takes over your life. When it's born, the take over is a lot less subtle & a lot more accelerated. I see MND as being something similar.

It starts off as something innocuous, in our case a visit to the doctor regarding shortness of breath & has grown from there. As the symptoms increased, so to did our range of illnesses to choose from. By the time that a concrete diagnosis was first given, we both knew in our heart of hearts that this was serious & that there wasn't going to be any sort of quick fix. I remember vividly going to work the day after I read about what she had & what it involved. I remember trying to tell my Boss about it & bursting into soul wracking sobs as the reality finally sunk in.

A new friend that I have made on line who lost her Mum to MND gave me possibly the best piece of advice I have been given. Don't waste time grieving now. Celebrate & live every day that you have together. Grieving can come later. I guess that if you knew the harsh realities of what drastic changes having a new born babe in your life was going to make, you would possibly have somewhat more serious thoughts about having one. You look at a parent changing a crappy nappy & think, "Yuck, I couldn't do that." Somehow when the time comes & it's your own flesh & blood, you do it without a thought.

Just so with someone you love that has been diagnosed with a progressive illness. I don't actually want to know the gory details of what will happen in the future. I'm too busy living today. I do know that my darling is going to become more & more dependent on my help as time passes. I do know that I will be able to cope with it when I have to. I know this because I have coped thus far. I feel for the partners of people who wake up next to a heart attack or a stroke victim. They have to learn to cope with it in one rather nasty lump. At least we are growing into this disease together. Yes, I do still wake at 3.00 in the morning absolutely terrified & have to get up & do stuff to take my mind off it. Yes, I do still wallow in a mutual form of self pity thinking,"Why us?" But I get over it.

From somewhere inside I find what I need to get out of bed every morning & do what I have to do every day. So don't pity me, or tell me how hard it's going to be in the near future. I don't need that. What I do need is a pat on the shoulder & a reassurance that I'm doing a good job. Don't get me wrong here, I do get plenty of that, but the moral support from it is amazing. I used to be surprised at people asking me how I was coping, but not any more. There are a lot of wonderful people out there who genuinely do care, both in & out of the Health Sector. I guess like anything, if people see you genuinely trying, they will offer help.

Where is all this leading ? I'm not really sure. If you are a victim or caregiver, this may strike a chord with you somewhere. Take heart & remember that for every well intentioned bungler, there are10 or more out there who will give you what you need. My first father in law was an ex air force armourer. They had a dog Latin motto for their unit that read,"Nil Bastidium Carborundum." Meaning ? Don't let the bastards grind you down.