There are slow changes in the usual things, like Chris`s voice and his balance, but thankfully no other major changes for now.
Since Chris was first diagnosed with MND I have gotten to know quite a few people in and out of the virtual world who have been touched by this evil disease in one way or another. Some have been battling with it for quite a while, others were taken by it very quickly. In this past 6 months I have heard of a few people who have passed away during that time and it brings home the reality that this disease really doesn`t have a cure and is always fatal. Five people will die of it everyday, this ticking, malevolent time bomb of a disease steals the body of it`s motor neurones by stealth, like a parasite, sucking the life from everyone it touches. Without muscles, especially those that help us to breathe, we will die. Yet in spite of all this, in the majority of people, their minds are untouched and there lies the cruelest twist of all, to be aware of every step of this evil disease.
There is one particular family who are fighting this disease at the moment. Eric is in the later stages of MND, he and Davina, his wife, have three young daughters. He can no longer talk without the aid of technology, he needs constant care and he sleeps a lot because the medication to help him breathe makes him drowsy, but that bright, brave mind, still glows and fights and his strength and Davina`s are a true inspiration. Their story would touch anyone, but it particularly touches me because I see our future and while my heart breaks for them it also breaks for us. Our life is tame and calm in comparison for now, but looking into the future that others live or have lived, is very scary. Even now Davina is still able to offer love and support to others, myself being one, and I am very humbled by such kindness and strength when facing losing the love of her life.
Chris won`t talk about how he is feeling very often, he is still able to do some of the things he would like and he still laughs and enjoys life in spite of MND. He told me though that the reason he won`t talk is because he knows he will cry, so underneath that brave front is the fear, anger and feeling of unfairness that everyone who is going through this feels.
Davina told me that we must make the good memories now while we still can. She and her daughters are hoping for one more last, special Christmas with Eric and we are going to do the same. I am going a little mad with decoration planning etc in order to make this one really special Christmas for us as family. I hope Chris will have a few more Christmases left in him yet, but the future Christmases will always be different for Chris as his health inevitably deteriorates. Someone else told me to celebrate every special occasion as if it will be the last, even though hopefully it won`t be and that is what we will most definitely do.
Take each special day and celebrate it as if it were your last, because with MND...it may be.
(Davina gave me permission to include her and Eric in my blog.)
(Davina gave me permission to include her and Eric in my blog.)
