When the Wheelchair PT Janet was trying to explain a point about my disease and caregiving today while tuning the new wheelchair, she said, ‘I bet some days you wish you could walk away from it all.’
I look at her with a quizzical look.
“Not you honey,” she said, “Though I bet you wish you could just up and walk away from it all.”
She was talking about having to make the tough decisions every time my autonomic system fails in a new way, to call 911 and spend 30 minutes trying to get them NOT to accidentally kill me or just wait 30 minutes and see if I get worse.
I thought what life would be like if I wasn’t in a VIHA clinic, getting tuning done on my wheelchair, if this wasn’t part of my day. What if I didn’t have home care later? I could just walk across the lawn to the sea, could walk up the stream leading down to it.
But the truth is that I haven’t the slightest idea what I would do, except that I would have more time to figure out how to do it. Should I just go back to writing books or try to take over the world, or just play cards with catgirls (watch out they cheat). So, so, many choices.
I have tried to avoid that game of staying two steps in the past, playing ‘if only I wasn’t….” and instead figure out what to do NOW. When I became disabled, I let loose the voice inside that said, ‘…..if only you weren’t too scared.” And I dressed how I wanted to dress, which ranged from goth, to sex goddess waiting...and back again.
Linda said on this picture, “She isn’t a goth! She’s smiling.”
I said, “Exactly, she a true goth, she knows who she is and what she wants.” I remembered, “Do you remember when I started wearing goth armwarmers, gloves, corsets and suddenly they went from something ‘ohhh’ and forbidden and maybe kinky and ‘what type of people wore them’ to ‘what type of corset today, the lace and velvet or the spider web?’” She did remember and smiled. “And then I convinced you to get a corset and we all got dressed in boots and arm warmers and went to the cemetery. And suddenly the corsets were what everyone wore.” It was a good memory.
Now days, I wear the corsets less, because I go out less, but I still try to get one out once a week, but the stockings and mary janes, the kinky books and the 4 inch heels are languishing, waiting. I talked to Linda about sex fantasies today (mine) because I want to know what turns me on. And we talked about stories we had read in the Manga Object of Desire and the stories in it and found that this one story about a woman who works as a maid in a maid cafe was the one which turned me on. Was it because I wanted to dress as a maid? No, but I did want to have a nice matching set of ‘sex undies’: the tap pants and bra or the panty and bra set, the negligee and ribbons in my hair the same colour. So, that is in my shopping future, something else to look forward to I think!
Okay, back to my sexual fantasy and arousal. We figured that this girl worked in a maid café and then at a party she asked if she could be a maid as that would be fun, to be a ‘professional’ maid. Other people looked down on her, and her partner came to her rescue. And I think that is what I admired, that she knew what she was, she knew that the clothes were just that, clothes and didn’t define her, but were a part of her expressing herself, and that she did what no one else did at that party, lived out one of her dreams. And the part that makes it fuzzy and glow inside is that she had a partner who watched out for her: who made sure that others did not make her feel bad about her dreams; who was aware of all the things she did and was there when she needed him/her (him in this case). That’s erotic to me.
I think with the coming of spring, this is very much the time to cultivate dreams. Some people like to garden, and so this is a favorite season coming up. They say that ‘love’ is what makes plants grow. Since I live in a building opposite to the sun, I will say that I tried love, but I think that having the sun and some water probably helps too! But I can see the attraction; planning out the garden then enjoying it, or like we did, growing a window box of parsley and other herbs and then going to cut some fresh green onions, parsley and other herbs to add to the Mexican Chicken. Spring is a time when every bulb and every flower is making plans (usually simple plans like, “Open and get sun, and spread seeds” – but plans all the same). And we enjoy seeing the beauty of their plans in action.
I guess it seems that I have left the ideas of loneliness, isolation behind. But life isn’t simple so why should I be? I have spent the hours staring into the darkness, aching. Desires. Yes, I have the aching to find others like me, to stop feeling so alone. To spend days not treated like a thing. There is the dark side of me, and the light side and they exist together. I was giving the tech sass and he couldn't get why I needed such a high end low mobility chair. Then not long later, after I had a grand mal, he worked around me, shocked, silent, uncomfortable, as I tried to watch and talk with him using my good eye. I was still the same person, the same mind, sort of, in the same body.
Tonight, going for my nap, I had another seizure and started crying, because the pain and exhaustion of it all. Yeah, it was just one of those long, long days. And now I had just ‘one more’ seizure, like each one wasn’t a special hell. Linda gave me Miko to hold and touched me. The touching me made me cry more than before, because it was what I ached for so long, within the seizure. I know Linda or others hold me, or speak to me while I am seizing: but they are locked outside and I am in.
Many people (not the readers here I think) see me that way, a ‘poor thing’ locked, chained to a body that is dying on her. And what point is there in explaining that I am who I am, that I have this FABULOUS dress sense due to disability. That my disability has shaped my humor, my viewpoint, my caring and my actions. I am not the prisoner, because I act, it is them.
Before, I lived my dreams, I got a Ph.D. so I could spend my time with my great love: books. Books were my morning, my evening, my rising, and my fall of the day. One time, running out of air, dying, I dreamed I was about to be taken to the LIBRARY where I would meet Borges, and Calvino and all the great authors, who worked daily on new works in the library, and the books were sold in the bookshop.
That changed, those dreams. Well books haven’t, they are still the great mirror of the soul. They are our entertainment, our challenge, and the way we change ourselves without leaving the chair. Books are still touches of greatness. But they are currently closed to me.
In the same way people believe that EFM is now gone, or is here only in shadows or that is who they want. I have a vocation, and I serve that vocation. And as long as there are those who need me, I serve. Or to put it in another way, I will never have the physical ability that I once had, but on the other hand, I now have other ways to ensure that those who need help, are heard, are seen, are remembered. Sometimes, my words, sometimes my presence but understand, who I am has not changed. It is one of the reasons I am going for my BC wheelchair racing rating. It is one of the reasons that I say, “Okay, you’ve told me it is impossible four time, now are you going to take my money so I can go do it, or not?” Every time I send postcards, I am EFM. Every time, I face another specialist who tells me I better hurry up as they are busy after making me wait 50 minutes to see them, I am about to go EFM.
The thing about me, is that while I change, I grow, I like to think that becoming disabled has helped me to grow, in many ways, I do not change. I have a code, I live by that code. And part of that is that when there are those in need, I stay, until every last one is taken care of. If there are five spots and six people, I stay. And just being that way drives some people wild. They try to bully you, they try to belittle you, they attack; I wish I knew why, but the law remains, and I remain, and if they are a bully to others, they shall not pass. Linda says she has seen this look on my face more than few times (and since becoming disabled).
So…..spring is coming, and there is a future ahead of all of us. ALL OF US. I have a future, I have choices. I almost stopped the postcard project after several bad weeks. But I didn’t, because I know from my own life the joy or anticipate that post can bring. I know that anticipation itself is a gift. That someone sending post that isn’t just formulas is a gift. That someone thinking about YOU, and sending gifts, however small, is something special and something to treasure. I do.
We all have this future and we have to decide what we are going to do with it. Or who we are going to live it for. For you? For others? For both, I hope. That this, not new years is when I make my plans, my dreams, my desires of what will be done, because I can hear the wind, the sound of grass, see the buds of plants. I look out and know that I better get something going and catch up to nature, because change is coming whether we want it or not…just as it does every year.
13 hours ago