I’m just sitting at my desk at work, my office door closed, when my hands get so cold from this condition – Raynaud’s Syndrome , they say– because I have lupus, and because I have epilepsy, and because I have cancer and some other thing called Reflexive Sympathetic Dystrophy, which all amounts to, I’m a physical mess, but a walking miracle, because by most accounts, I really shouldn’t be here. I’ve stepped over this line before. The last time was a few years ago when the first cancer came; the first time was on the day I was born, when half of me died. I should be dead, and those around me know it; they sense it and smell it. It is near.
It’s nothing dramatic, as you would expect. I realize it sounds dramatic, but I have to tell you, it’s not. This feeling is something I am used to now. There’s no panic involved anymore; just curiosity. Will I wake up this time? Will I be on the floor? In the hospital? Will there be a crowd gathered round and a nice EMT feeding me oxygen-nectar through a plastic mask?
I will be working, doing some ordinary and banal thing at my job – I have the kind of job everyone has, pretty much (with the exception of a few privileged people or select geniuses, who are smarter and have jobs as visionaries of some kind and are paid exorbitant amounts of money, or those trust fund children I once so envied). But mine is a good job, and truly, medically speaking, I really shouldn’t even be able to hold down a job; I should be on disability.
But I have this strong and stubborn will. Sometimes I want to quit, just give up, but my pride is too strong. People mistake this for courage. They say they admire me. I think, You fool. It’s only pride. Pride that makes me get back up and say, Oh, I’ll show you. The more they tell me I will die, the harder I fight. One doctor, who I grow to truly love, my oncologist, he tells me that he ‘won’t let [me] die.’ I think that is his pride talking as well. At least we’re on the same page. Pride can be a powerful thing, and if you grow up with everyone telling you that you can’t, then you become a person with something to prove. So you prove them wrong every day, not for you, but just for the sake of one day saying, Ha Ha, Told you so. You see, not admirable at all.
My neurologist calls this a fugue state. These moments of dread when I feel I am dying and everything goes blurry or is doubled (they call this diplopia) and I feel myself slipping away and out of my body. My eyes get heavy, but it’s not fatigue or head-nodding sleepiness. It’s more like a warm bath that I’m slipping into and it seduces me. Really, not too unpleasant, apart from the falling sensation (which is because I really do fall – or rather drop – to the ground). As this happens, my hands get freezing cold. The rest of me remains fleshy and warm and pink, but my hands – they get dead cold. I read about people saying that when spirits are around they feel a chill in the air. That it gets suddenly very cold. Then I wonder if there are spirits around me, or if it’s just that my hands are more susceptible.
These are seizures, sparked by storms in my temporal lobe. Over the years, the spikes have grown sharper, the peaks higher. My neurologist frets over the spikes. I look at them as lightning. I have fire in my brain, and though sometimes it makes me feel I will die, gives me strange visions and makes my body jerk and fight, I am not sorry for this epilepsy. I think of Shamans communicating with the spirits, and I find that in many cultures, in Inuit culture, quite often the village shaman is epileptic. So now I think perhaps I am a conduit, between this world and some other. That I can journey between two realities and bring back tales to the villagers. Perhaps come back wiser.
Sometimes, I’m trying to fall asleep at night and I see these bright, light-like hands, like light-bulb hands made of glass balloons. They reach through the darkness to pull me up. I don’t know where they are reaching from or why they are reaching to me or even where they would take me; do they wish me well or ill, I can’t say. But I know they are reaching for me, and I know who they are. Two are my brothers, both dead. Each haunts me in his way.
One brother, Richard, is a hungry ghost. The Chinese say all suicides or murder victims are hungry ghosts because they can never really be at peace because their death was sudden and unjust. Maybe all death is unjust; I can think of a thousand other unjust ways to die, but these two that I mention, these are the worst, they say. They burn spirit money and create altars and try to placate the hungry ghost so that he will rest. Sometimes he does. Richard had brain spikes too, but of a different kind. He refused to take his medicine because it numbed the spark and verve, and I understand this. But in the end, it was the down-slope of the spike that caused him to shoot himself one raw, January day. The wave dipped, and he could not see his way back out.
He wanders the house knocking things about and being vaguely angry. He pushes things to scare me, opens the door that leads to the basement, even though I’ve bolted it, when I pass by, it is flapping open, the cool dank air from below blowing in the hallway.
He was like this when he was alive. A trouble-maker. A joker. Now I think we don’t suddenly mature after death. That if our energy continues, because I believe that is what gives us life, that what makes the soul is simply energy, and since I read that energy never goes away, that it just converts, I have this think that when we die, we just switch frequencies. In a way, we don’t really die at all. We just aren’t recognizable to our friends, because they don’t expect to see as pulses of light, traveling through fiber-optic wire, or analog waves or whatever. Richard’s energy is frenetic and recognizable. Even though I don’t see his shape, the body that was his, I feel his low, electric buzz like a fuse box.
My other brother, Caleb, was a gentle soul. He died when we were born. We were born on the same day. Well, to be completely accurate, I should say that on September 5th 1966, we were both born, and we both died. We were fraternal twins and as such, Caleb and I were not identical in every way the way some twins are. But in most ways, we were identical. In some deep recess of my brain, I remember Caleb, he and I spooning together in our mother’s womb. .
On a wet September day, my mother and grandmother ran through the grey streets of London to the Catholic hospital. So much blood; my mother has a bleeding disorder called Purpera. It was too early for this; the twins were not developed yet. But the blood came and so they rushed to the hospital.
The nuns at the Catholic hospital thought she had tried to give herself an abortion and looked at the blood as evidence of such. Mother was just over seven and a half months pregnant, so this was illogical, but so it was. The head nun who was the gate keeper, wouldn’t even let us all in out of the cold. She called my mother a sinner and looked upon our Scottish freckled faces with disgust before closing the door in our face. I could feel Caleb struggling in the darkness and I held onto him. I gave him my thumb to suck because he liked that, but he couldn’t take it and instead kept turning and turning and turning. Our mother doubled over in pain, then an ambulance came and the four of us were rushed to another part of London.
So it was that we found our way to Bearstead Jewish Memorial Hospital at the other end of town, frankly, the nicer end of town. So by default and accident and bigotry, I was born in a far ritzier part of London than I had any right to be. I can always claim I was born in a good area.
That hospital teemed with foreign and exotic faces and darker skin and Sephardic looks. Doctors with dark hair and blue-blue eyes like the bluest marbles. They were kind and better educated than the Catholic hospital. I hate to say that, because apart from me, my whole family is Catholic. It is because of this miracle that I am not. After they turned us away, I think my mother knew that she would never force me to be Catholic and so I was raised Church of England, which is Anglican, which is like the default religion when you have blank to fill in.
My Jewish friends tell me that I’m an honorary Jew. This is a great compliment. Only they can say Jew, they tell me; I cannot say this word because I am not technically Jewish – but honorary and honored to be such. They say this of me because I worry and I like to take care of people and I cook and the kitchen is the heart of my home and maybe I’m a little neurotic (as if being Jewish gave you a corner on this market), but nonetheless, since I was saved by Jewish people, I am honored to be considered one of them. My friend Jojo, who is really Jewish, she holds me close like a sister and tells me that I am “a good Jew” and strokes my hair. I am happy when she does this.
At the hospital, they took Caleb from the darkness. Through an opaque film of eye-lid, I saw bright light, sudden and quick – a flash – and then Caleb was pushed out. Beautiful Caleb, suffocating in blood and choking. Drowning in his own mother’s blood. He didn’t make one single sound in this world. His voice was never heard. Not once. Not even when he came out.
Doctors and nurses gathered round, but they lost his heartbeat and he died. They wrapped him, then came to me. There was no time for mourning: I pushed my out, fully expecting Caleb to be there waiting for me. All this time we had been together, it would be another adventure for us, outside of that warm and safe and dark place we inhabited. But it was not to be. I never saw him again, never felt him spoon against me as he slept, or suck my thumb instead of his own when we were inside, or do that funny thing when he would put his leg up so that his foot was behind his ear. I envied that. Wished I could do it. It made me happy when he did it. Our mother thought we were kicking when he did this. We were laughing, really.
I didn’t like being there in the world without Caleb. For months, I was a miserable baby. I cried and cried, as I’m told all preemies do, but this was the sixties and no-one had any patience for preemies, so I was just a frustration and a burden and a sorrow. I think mother wanted a boy more; I should have been the one to die. Did my family, the doctors, the nurses, know that I cried because I felt sorrow? That a whole part of me was gone. That when Caleb died, I died, and when I lived, Caleb lived. That we are one and the same.
I wanted to be where Caleb was. I had followed him down that tunnel, but when I got to the end, there was only bright light and noise and scary and foreign things and I couldn’t see him anywhere. Then I saw what must have been a doctor or nurse carrying a swaddled-in-blue bundle and touching her finger to his little face and there was Caleb, but he wasn’t there anymore. He had already left.
My mother lay on the table exhausted and sad and bereft. The one carrying Caleb took him to her and she held him against her swollen breast and she rocked and she cried and she bled great rivers. My beautiful Madonna mother, the sorrow she felt on that day and, I think, every day since then.
A different nurse had taken me to a smaller table and was trying to wash the blood off of e, but the water was cold and startling. Sound, sensation, light, everything in this new world was sharp and aggressive. I wouldn’t stop crying. I could only see shapes, but I could sense my mother and kicked and turned to see her holding my brother. She was kissing and pushing back his soft-silk brown hair.
As I lay on the table, watching mother holding Caleb’s frail body, I felt his hand reach down and stroke my cheek as he rose up and out of himself, to where I don’t know. Caleb’s light bulb hands, all bright and incandescent like him. I could make out those shapes, and I always knew Caleb anyway. I could always sense him. For a moment, I stopped crying and reached up, my fingers just barely touching the tip of his bright-light fingers and then off he went, light as a feather. He smiled and was happy again and not choking anymore. He whispered something in my ear, but if I write it, you wouldn’t understand because it was our secret language, the one we had used in the womb for seven and a half months. It sounded like hushcoos hashab ibah. All I know is I looked for him everywhere. Most of the time, I couldn’t sense him or find him.
As I got older, I sometimes felt that he was around. I got a shivery feeling in my spine. The doctors said it was epilepsy. That these were what they called “fugue states”, which is like being in a trance and doing weird things and sometimes falling down and convulsing. The epilepsy was caused by a traumatic birth; I knew that. But when I went with my mother and grandmother to the doctor and they asked about any trouble with delivery, all of us sat there in silence. If we spoke, it was to say “no.” It never happened. There was no other child. There was no gale force wind in London on that day. It did not rain like it was southeast asia. The roads were not flooded. None of that happened. Whenever my family has spoken of this day, it is to say that it was an uneventful delivery on a warm, September afternoon. Why I was born at the Jewish hospital takes a bit of explaining, but everyone in my family seems to be an expert liar and exceptionally talented in matters of denial, so we say, it was a golden afternoon and merrily we rowed and I was born and mother glowed and so it was.
My mother was around, then disappeared. She was this beautiful, almost mythic creature, that would show up in my life on some magical evenings, looking so feminine in her work suits and silk blouses and smelling of Caleche and Chanel No. 5. By then, I lived with my grandparents and they were the only parents that I ever knew – of any consistency. They were the every day, and I love them for all that they did for me, for loving me even though I was a reminder of something horrible. I think that’s why my mother gave me to them; I was emblematic of the sorrow and grief that was held in that day. I was a secret. And I often felt that if she had to choose for one of us to die, it would have been the girl – me – that she would have preferred Caleb. I don’t blame her for this. Even though Caleb and I are one and the same, at least, as far as he and I are concerned, I think he was always the more gentle one. I was the child who would butt her head against the wall, who was willful and obstinate and needy and difficult to comfort and afraid. By contrast, Caleb was easy and quiet and lovely. He was the balm to my sting, and he could soothe anyone, even her, I think, so I wish he had lived, because it would amount to the same thing.
We are communicating vessels; his energy in another form may be harder to recognize for some, while my energy is contained in this neat package that says I am alive I am a person. But I do not think I am any more alive than Caleb. I think if you look for the dead, or those who have passed, transformed, they are there.
They are the energy we can’t explain, the hiss on the phone, the shhhhh sound of summer rain, autumn rustle of the tree, and the soft plop-paddle of ducks on the pond, the tinkle of my little windchime I bought in China Town that suddenly moves fast when there is no wind; I find Caleb in all of these things and I know he is energy transformed. I know that when I move my hands, even as I type now, that I am typing for both of us. That these are his freckled hands, that these grey-hazel eyes in the mirror staring back, these are his too. Every time I see my own reflection, it is not lost on me that I am also looking at my brother: that I am looking at two, not one.
This is how we live two lives, and this is how we die two deaths.
When I think am dying, I often wonder if Caleb has similar thoughts but in reverse – does he think: I am being born? When I run fast, or ride my Beachcruiser bicycle and the wind blows my hair and I see the sea and smell the salt, can Caleb feel these things through me, just as I am sure I feel so much through him.
These are not questions I can answer; at least, not objectively, for I am certain that we live on in each other. That death is but a transformation, a loss of the mortal body, and what it takes from us is the ability to hold that person close again, and this is a profound loss. What I would give to hold either of my brothers again. To see Richard or Caleb, standing on a beach, the wind tousling their hair.
I will take these epileptic fugues, I will journey to that world. Be it a trick of the mind, or sudden surge of electricity, a faint fit of this epilepsy, it is what William James would have called an “ecstatic experience.’ It transcends and I am lifted higher and higher and I can see the world and touch Caleb’s light-bulb finger and know that there is so much more than this.