I remember 31 years ago when Eleanor Rose ( my middle daughter) died, I went out to shops and did all sorts of "normal" things. But it was such a strange existence, people didn't know what I had been going through, didn't know how deeply I was grieving. I felt then, I think I should wear a badge saying... my baby died on January 6th. She was 10 days old." In other words I felt the world should stop and take notice. But , of course, it didn't . The grief continued and very gradually I came to terms with the terrible , terrible, event of the death of dear baby Eleanor.
I guess I'm writing about that now, as I sometimes feel, Should the World Stop.. but actually life goes on.. and I continue to order each day. Visits from medical people to help me, visits from friends to whom I appear normal,( well as normal as anyone would in a wheelchair, who stumbled and walks with a strange gait.)... Is this how I want it to be?
Some days I simply don't know. The world continues to spin, but I feel out of sink.
Today I had a visit from friends from Hertfordshire, we first met on a camp site 26 yrs ago. We have kept in touch each year at Christmas and in the last few years met twice.
As they left I was brave. But part of me thinks , will I see them again? But I probably will. The progress at the moment of the MND is slowish, but I know it's marching on. I will see them, but how will I be then? I simply don't know.
Each parting, especially when I see my children, leaves me with an emptiness, what will I be like next time?
I do try to be brave, as much to protect others as myself. But it is hard. Should I behave like this, or just let my feelings go.
I want to tell people that I love them, care for them and that I will miss the futures we may have shared in some way...
In a book I am reading, Tuesdays with Morrie, a guy with ALS goes to a friends funeral. He hears all the wonderful happy, loving things said about his friend.. comes home and thinks... what a waste... he didn't hear that.
It's no use saying kind loving words about a person when they're gone.. say them now.
Kind loving words may make me cry, but it will so help.
I think I knew this deep down, when I first entitled my Blog HUG ME... When you are dying you need the love now. The world for me isn't going to stop, I shall continue to be as me, as possible. I shall go out as much as possible, but exhaustion does limit this. I shall paint, and I will try to be as "normal" as possible... but I carry this awful burden. Some people take the stance (perhaps to protect themselves?) ,..... oh anything could happen... you could be here for years.
I won't. But I want/need the years that I am here to be good ones.
On Saturday I went, yet again, to look for carpet. It broke my heart to know that a wheelchair on a wool carpet will wear through and thus I must have a polypropeline one. I love wool. It's warm, it's comforting, and I feel it says something about me as it's natural and so special. What a silly thing to get upset about you may think. But I have had to make so many compromises.. my house now on the market, unable to get out without help, unable to get to the door quickly, not standing facing the shower, wearing a device to keep my foot from flopping, half filling the kettle so that I can lift it, ready meals etc ... and this is only the start. I am adapting to my life and my spirit is strong, but I need to tell you all ... this is hard... it's so so hard.
HUG ME, I'VE GOT MND
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