A long moment looking outward so, in two parts!
I am more and more aware that at the moment I need to keep my focus on myself and direct my energies to surviving and healing.I am just one, of many. I will never know how many in the forums, reading my blogs in passing or just members of the site are recovering from, in the midst of, struggling with or, like me just beginning their journeys with some terrifying, painful, annoying illness or 'condition' right this minute.
I am being as public as I can bear to be with what is going on in my life because the worst part of it for me is giving up control, in bits and pieces, and not knowing any answers no matter how much I do what the doctors ask of me.
I write all the little sulky details down because at least that way someone else who reads here will know I behaved like a big baby at times so if it is what THEY want to do, they are not alone.
Yesterday I told my neuro (politely) that he might want to make sure his patients are aware that the lumbar puncture MIGHT be painful, might give really weird feelings, might feel like a panic attack turned inside out.
I pointed out that NO ONE so much as suggested to me thare was anything more to it than the possibility of a bad headache after. This, combined with the fact that I KNEW I was having a local anesthetic lulled me into a state where I expected nothing and so was taken totally unawares and was completely vulnerable to basic fight flight or feel like having hysterics responses.
Of course being aware I had 'long and sharp' embedded in my back, I lay very still and hoped my indepedent left leg would stay where it had been put.
That moment, looking outward, trying to make him aware so the next poor soul at the mercy of 'long and sharp' knows what might happen, reminded me of all of you who, like me, are trying to find ways to think about the unthinkable.
Trying to get straight answers from people who want to heal as, help us, but get caught up in the puzzles we represent and forget that we are right there in front of them with fears and feelings.
Trying to set boundaries so our well meaning family and friends don't drown us with attention we really do not want, and yet do't stay so far away that we feel lost and terribly alone under the flood of tests, of words we do not know.
One friend said to me I don't know what to say to you. And that is not true. He does not know what to say to the disease he suddenly sees standing where I used to be. Or perhaps he doesn't want to say 'how are you?' and have me tell in gruesome detail each twitch, each awful feeling, is afraid I will cry over something he cannot fix.
I told him just say hello and offer me a hug if I want one. I find I crave connection. And if I cry, ignore it, give me a tissue or a papertowel to blow my nose on. I will stop.
Those deep resounding sobs are just the song of fear and loss that have to be released if we are to stay sane as our lives change to paths we did not choose and never expected to travel. Worry about us when we smile and take tiny steps and keep our arms pinned close against the body. I cannot speak for others (although I am trying to) but that is when I am fighting not to break, when inside I feel that I will shatter if I breathe deeply, when i feel like filaments of glass so stretched I need to wrap my arms around me if I am to survive.
to be continued.
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