Inside and on the surface I am still in shreds from Thursday nights subconscious scream, facing anything in life that you have so neatly stitched into a corner and buried under concert suddenly escaping, isn’t something that is easy to pull through and re-cage. I didn’t read the comments until this morning as I was trying hard yesterday to distance myself from all of it, but last night Adam told me he had read it while I was asleep in the afternoon and left his comment, he then told me what he had written and again the tears won out and I crumbled into a mess.
We talked on and off all evening not just about what I had written but about all the things that led to it and the truth that I had so neatly avoided until now. I know I had said that things were worse or slipping and that I had more problem now than a couple of years ago, but I hadn’t even to myself been telling it to the full extent. It has been so easy to gloss it all over as the only person to person contact I had was with one person and I think now that even Adam was adding a gloss, not really seeing in detail how badly things had changed. When you are with someone all the time you don’t see the changes as they happen slowly and aren’t stark and obvious, I haven’t had to deal for a long time with the rest of the world, so my imaginary me was safe as no one was really seeing me as I appear now.
Last night I was totally honest, you see there is nothing of me now that hasn’t been affected. To look at me the first thing you will see is that I now no longer get dressed or spend much time on my appearance, because I can’t. I would love to be able to do all the preening and beautifying I use to but it takes too much energy and when it comes to makeup well I can’t physically manage to draw a line on my eyes or lips that doesn’t miss it’s intended position. Then next thing is my weight, the 5ft 9in size 10 figure that had reasonably good muscle tone is now a size 20 flabby mess that I can’t stand looking at, so why would anyone else. No matter how little you eat when your mobility is zero weight slowly piles on, I have tried and tried to loose it but even the doctor has said there is nothing that can be done and trying won’t work. Then there are the twitches and spasm, the unsteadiness on my feet, the grabbing of doors furniture and anything else to help me stay on my feet, the original me was nimble and fast in action. I danced well and walked everywhere, physically if you took the original and the present side by side little would tell you it is the same person.
I was quick witted and nimble in speech, I had a voice and a brain that worked together to amuse and beguile, people listened to me and I was frequently told I had a beautiful voice, one that I used for many years to make my living. Not one job I have ever had before my MS turning progressive, wasn’t partly because of the way I talked along yes with a brain, but from DJ to Sales all need a voice that sold me. Now my voice is broken by stutters and silence, a voice I would hardly trust to buy far less sell. One in five sentences fail to make it to the end and one in ten consist of one word and then nothing. It take me so long to work my way through things that I don’t class myself as much above useless when it would come to the world of work or even company. A long time ago now, I would have spoken this entire post in seconds without stopping once to think of the next topic far less the next word, I was an analyst, a Visual Basic programmer, a Operations Manager, someone trusted to investigate, monitor and recommend everything from working hours to budgets and staff to not employ, not one of those things would I even consider being able to do with accuracy or in a timely fashion.
Looking at what I am now and what I am capable of, well I can still love the world and those in it, I can write if given the time and I can talk rubbish but without out style. I am not the same person to the outside world, and even in the inside I can’t find the complete old me, she is gone. Picked apart bit by bit, slowly erased but nothing of substance replacing what has gone. Yes this is incredibly painful to write and yes there are times I have stopped to clear the tears from my eyes, but that is what this blog is all about, writing everything good or bad that MS does to it’s victims, ignoring this and moving on would be wrong.
When Adam is with my I feel safer, he knows maybe as well or better than I what has happened, he has had to witness it all, so I have little to hide. When he is with my he can take over when I get totally lost and have no way back to what I was saying, he can add prompts that might help me move on, fill in the spaces in the world that I have lost. On my own, even the other day when Teressa was here, I felt scared and embarrassed as she hadn’t seen me for a while and I am not the same as her last visit. She is my daughter and I wanted to protect her from the hard truth, but no matter how I tried to be who I was the last time she was here, reality smashed in as it does and exposed the me I am now.
So what now, I’m not sure. Somehow I have to move on, accept it and not hide it again just work out the issues to a point I can accept and understand, a process that will find it’s way in here at it’s own pace I expect. Give me time I will do it.