Partner and children have gone to big annual arts day. It's for all ages and all abilities. Involves about 500 people and lasts all day -- 10a.m. til 10p.m. This feels strange because I used to organise it ....before I was ill. I cannot fathom how I did it now, in terms of energy: the whole long run up from 10 months before, the organisation, publicity, catering, entertainment, the contracts, budgets, fundraising, volunteer drive. Then on the day I'd be there from 8a.m.to organise, rally the troops, meet and greet, jolly along etc.
One of our friends who has also gone with her child, asked if I would be going today. No. For one I couldn't possibly last more than half the morning and then wouldn't have the energy to drive back. Usually my partner would drive us there and back so I could be with the kids for at least the morning. Apart from that it's still too raw to be faced so directly with what I cannot do anymore. I know if I went I'd meet lots of people I haven't seen for, maybe, 6 or 7 years. They've moved on and so have I but in completely different spheres.
Most of the time I can block it all out. I can listen to my own and others' good advice about moving forward and not looking back. Sometimes the past catches up and I can't help but feel sad and miss the energetic person who was full of ideas and, yes, quite dynamic in my own small way.
I have learnt to appreciate the small things; learnt to love the same small patch of land I pace with the dog because I can't drive to the sea anymore; learnt to 'smell the roses'; learnt to appreciate the extra time my illness gives me with the children ('I bet they love having you at home so much') but sometimes, just sometimes, I yearn to be a grown up participating out in the world. It's all part of the shifting bereavement of acquired disability
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A few months back I began to organise a few poetry-related things - but I do it in my way. This means everything is very ad hoc. Book-keeping consists of a tin - where money comes in and goes out and we hope things balance. I keep involved with workshops - just - as long as I'm getting enough fuel of one kind to help balance the other. I must say the sound of the annual arts day - lots of people and busyness - doesn't draw me at all. It's been so long since I've done anything like that. At my kids' school they used to think I was awful for never getting involved in anything. I used to sit in the car and smile at people through glass windows so as not to be asked to man a stall at the Xmas fair. But I feel sad too sometimes - about others kinds of things.
I'm sorry to hear you can't drive to the sea. I can, but it takes it out of me, and the only way I can make it back home is with the help of drugs and caffeine.
In the end they had a wonderful time. I knew they would. My partner saw some of my old colleagues who asked after me which was kind after so long. All the same I'm glad I didn't go.
My partner said it seemed such a pity I couldn't do all that anymore ---how odd it was to be there without me around but it was all in the past. We both know I couldn't possibly do workshops anymore.
Funnily enough I do get involved in the children's school stuff. I man a stall at the fetes, do face painting, always design and paint the Xmas play scenery. It nearly kills me sometimes, but it's one way in which I can be involved and be seen to be involved. The kids love me being around and I do it at my pace --- like yourself with the poetry workshops. I guess we all find ways of getting through.
I've tried driving to the sea. It's about 15 miles each way. Coffee makes me shaky and foggier --well, more shaky and confused and can't seem to find drugs that work for that. I wait until I can be driven and when I do get back to my beloved seaside I could almost roll in the pleasure of it like an old dog on grass. Makes the wait worthwhile !
This is beautiful...and I can tell you are a kind and gentle soul. Your words are heartfelt. I don't have experience with disability physically, but I do have a lot of experience with feeling "locked out" or a prisoner in one's own world...looking out from inside -- feeling alienated, alone and very sad because one cannot participate fully with everyone else. I have been an introvert since I was a little girl...very shy, quiet and turned inward...but a whirlwind of thoughts, emotions, and imaginings going on inside. Art was the only thing that saved me...and I've been doing it since I could hold a pencil. Within my images I was able to be whomever I wanted and to go wherever I wanted. There were never any limitations. I found color, image, and story to be my best friends. It was only when I entered art school that I realized I was not alone and I met some of my most powerful and kindred friendships there.
You may not be able to travel to the fair or to the sea, but you can travel places further in your mind with me and with others here in the art community. You have a new friend and it would be my pleasure to travel with you when you feel alone.
You are linked and I will return...you can bet on that. And by the way, your photography is beautiful.
Dear ana, Thank you for such kind comments and for the fact that you have obviously taken time to really look through the last posts and think about them. Your compliments really do mean a lot to me. I know my family love me but it's rare now to have such positive re-inforcement from someone outside my immediate circle. Being away from work for so long because of illness makes the world a smaller place.
We have more in common than you know --- I've felt as you describe since I was small too. In my case it may have something to do with being an only child: which is something I've explored in earlier work.
I've linked you too so that more people have the opportuntiy to enjoy your work
Thank-you for visitng my blog again and for your comments and kind wishes. I have taken a few days to answer because when I visited your blog and read this post, it stirred up so many feelings. I also visited a number of the blogs you link to that are written by other people living with cfs/me. Sometimes I think I live in denial. It is great to create art, but when I lose touch with the fact that I have cfs and what it has done to my life, I do find I can mislay my sense of wonder at what I do have. I'm not sure if this will make sense to you, and I certainly know that when I am in the middle of a relapse I don't have much sense of wonder either. Nevertheless, I know that my happiest times are when I manage to strike a balance and not go off the deep end, obsessing about anything, even art. Thank-you for opening up this insight for me again - it seems I need to keep returning to it over and over. Time for a cfs-related post on my blog I think, in order to keep the balance and make sure the blog truly represents me.
Warm wishes.
Dear Amanda, I'm really pleased my post has been useful -- if rather unsettling. You're comment is really appreciated and has led me to another post which I have put up today. I think this could be an ongoing discussion.
I wish you well.
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