It still hurts

If there is one thing that living with chronic illness that we become good at, it’s dealing with loss. Loss of friends, work, hobbies, families and even those we thought would be with us forever. Loss goes hand in hand with illness and some of us get so used to it, that we see it as something we are actually good at. Quite often when we lose something, we can replace it, and often that replacement turns out to be even better than it’s original. But I guess that all of us have one thing that is just too painful, too big for us to ever replace, or ever get over. In some ways, I am lucky, as that one thing for me, only comes around once a year. In others, I’m unlucky as there is absolutely nothing I can do to avoid it, as whatever I do or where ever I look it’s there. Well, how do you avoid Christmas?

Christmas for me lasted four months, from the point it was time to bake the Christmas cake and pudding, to the last chance there was to buy cut-price decorations, cards and wrapping paper that the shops don’t want to store till next year. Actually, it didn’t even really end there, as I bought present all year round, whenever I found that perfect thing for each and every person I knew, I squirrelled it away, this, that, and everything that said Christmas and I did it with love and total joy on my part. Then came my last Christmas, the last chance to give all those gifts, to enjoy every second of decorating my home and making the whole season special in every way. All of it was taken away and there was nothing to replace it.

For those who can’t quite see how my health stole Christmas, well it’s easy, it did two things that ensured that Christmas was over. First, it took my ability to work and therefore the money I needed to spend on all those parts needed for the big show. Then it stole my energy, my dexterity. I could no longer spend days decorating every room, setting our all those thousands of lights and ornaments, putting together those tiny details that turned our home into a Victorian tableau, but one better than any Victorian could ever have even dreamed of. It was designed with the exacting perfection, every ornaments placement and angled perfectly for a viewer’s eye. Days of planning, days of work and years of collecting all gone, just like that.

The first year that I knew I could no longer do all that was needed, I thought I could manage a scaled down version, but scaling down, just didn’t work, it wasn’t right and every second that it was wrong, hurt me. A scaled down Christmas was worse than no Christmas at all. The second, I let Adam do all the work, while I sat there like some kind of short-tempered director, being driven mad by a performer who could never deliver their lines, in the way they were in my head. Followed by my secretly spent hour after painful hour, trying to make the surface correct, even though the correct foundations were missing. The third, I banned Christmas, not even one single tree, nor a single ornament was unpacked and I found peace. My home as it is, without Christmas was better than a pale imitation. Yet, here I am on our fourth December without Christmas, and I can still see every single perfect tree, even without closing my eyes. Just as an amputee still feels their toes, I can still see Christmas around me, just as it should be at this stage of the month, everything done, everything complete, parcels completed with decorations all of their own, concealing there equally perfectly thought out gifts, all just waiting for the big day.

I coped when I found that I could no longer work. I replaced all the things I lost, one by one I could manage but all these years on, I still miss Christmas and there is no replacement, there is nothing that can take its place, nothing that can even come close. How do you ignore something so big, something that is on TV from November onwards? How do you replace something that is irreplaceable? If it wasn’t bad enough that I’m being forced by my health to live without it, I’m also being tortured by the world, telling me just what I’m missing every second of the day. And worse still, I feel like Scrooge, because I’m taking Christmas away from Adam, just so I can hold onto a little sanity throughout this month of the year.

Chronic illness sucks. It sucks in so many ways including the odd ones like this that aren’t directly the fault of my health. People try to understand when it comes to our bodies letting us down, but they don’t understand, when it something odd like this. I’ve been told that I’m being silly, that not everything can be perfect any longer and that I should accept it as it is. Well here’s the crunch, I’ve accepted it throughout my illness, my home isn’t perfect any day of the year, but Christmas is big, it’s flashy, it’s amazing and for me, it has to be perfect, otherwise, it’s not worth doing at all. We still celebrate the day, like all we eat too much good food, but now, it’s just the two of us. No gifts, no crackers, no table perfectly set with candles set among crystallised flowers, everything that the modern world and my brain says belongs as part of Christmas, are all missing. What we lose, isn’t always what others see. What we lose is often far more personal and completely invisible, and somehow, because it is so personal, it hurts even more.

 

Please read my blog from 2 years ago today – 06/12/2014 – The past is never buried

I am sure that I am not the only person who has found themselves with a strange desire to do something, but when thought through, well it just seems stupid. Yesterday after I had finished my post I once again had this desire to email my old agent from when I was a DJ. I was triggered a couple of months ago…..