I’ve been a week in this hospital bed and Tao is holding my hand. Or Toa. None of us are sure; it’s not much to ask, to remember the man’s name, but we’re the ‘Head Cases’; the Neurology Ward. Some of us have trouble remembering our own names. What we do know is that we adore him. Every day when his shift starts, he enters our ward with a cheerful disposition and it puts us on a higher plane. Where are you from Tao? Tuo?
He wasn’t a nurse, he was a care worker. He lit up our hours while he was there. What was special about him? He cared. Genuine. Pure. And he brought much needed energy.
“Ladies! I’m here! How are you today?”
It turned out Tao/Tuo/Toa was short for something with seventeen syllables.
“Every good man should be called Joseph.” Said Alice.
There was a short silence while we all weighed that up. We never called him anything other than Joseph after that. Alice wept every evening when his shift ended. He spent time with her, assuring her he’d see her tomorrow and that she’d have a good night. She never did though.
Alice was the first person I clapped eyes on when I was wheeled into the ward, and I thought I had never in my life seen anyone so ill.
“Hello my darling,” she called across to me. Everyone was ‘my darling’. Alice: My grandmother’s name; my mother’s age. Our ward was special. Beyond special. Alice centre, Lisa and Patricia either side of her; me opposite Alice, Pat and Mary either side of me. I’d watch Pat and Mary praying in the morning. Both of them would close their eyes. Pat’s lips moved. Mary used rosary beads.
“What are you saying?” I’d ask.
“I say my prayers.” Said Pat.
“Like, recite them?”
“Yes, the Our Father, the Hail Mary. I say them all. I say them for people.”
I looked at Mary. She was also 67, like Pat and a countrywoman.
“I do it that way too.” She said.
“And do you think about who is listening?” I asked them. “Do you think of God as a man, sitting on a chair, like, and listening to you, like a priest listening to confession?”
“I know God hears me,” said Pat. “I have no doubt in my mind. And He answers my prayers. I have no worries and no concerns because I know that. I believe it.”
Mary looked at me.
When Pat was being wheeled to her operation, she was praying, her eyes closed and her lips pressed into an easy smile.
“I’ll pray for you Pat!” I called out.
“I’ll be fine. I have no doubt.” She said. But we didn’t see her again. That happened; she was moved into step down, then another ward for recovery, then home. The woman who took her bed was not that much younger than her, but blonde and worldly wise, where as Pat had been a farmer’s wife, a simple unadorned woman who knew her truth. This new woman was vain and troubled. I resented her because she changed the dynamic of our ward. But all things must come to an end.
Before that, I thought Patricia, across the way, would change our lovely vibe. She was younger, perhaps forty-five. She was wheeled in during the night. In the morning I greeted her chirpily; she should know she’s entered the most delightful of spaces.
“I’m not fucking delighted to be here.” She said, anger seething through her, choking her. “My nine year old son has a brain tumour that blinded him when he was six. He was cycling his bike one minute and on death’s door the next. He’s in remission. Now I have a brain tumour. So forgive me if I don’t give a flying fuck about your lovely ward.”
Alice kept the energy of our ward pulsing normally. The tiniest kindness to her was rewarded with words of genuine gratitude, words that were designed to make you think differently about yourself.
“You’re pure gold.” She’d tell me if I fixed her pillows. I was the only one who could walk for a while, so I was the pillow flufferer. And I was the one who would march, angry on behalf of us all, down to the night nurses’ station to tell them for the tenth time that Alice was desperately uncomfortable; that she wouldn’t ever ring the bell herself and that she needed the hoist to make sleep bearable.
About a week into my stay, Joseph came on his shift and I was crying. His face reflected our pain; it was almost him you’d feel sorry for. I missed my children. He sat with me and held my hand. I had told Geoff not to come and visit every day; Beaumont Hospital was a schlep and our girls were tiny; two and four. He was grateful for the release from this added stress. Geoff was always the better parent; if either of us was going to be left to fend with the kids on their own, much better it was he. It has always been this way; he has known the right temperature they should be, what they need to include in their diets, how best to handle the awkward situation with that teacher, how to fill in the CAO form. But I was their mother and I missed them; the noise and the laughter and the worried little face of Aisling when I showed her our address, written in pen on the wall where we planned to wall-paper some day; how to read the characters to remind her of the learned off address. How to dial 999 if she found mommy asleep and couldn’t wake her. I had to ask that of my four year old. I can see her now, her concerned face coming into focus as I woke up from dozing, checking to see if mommy was finally not going to wake up. Feeling guilty I had put that burden on her. “I’m OK.” I’d tell her and she’d smile, accept it and go back to playing.
Two months earlier, I’d become worn down with the consistent headache I was having. I began to complain that I’d had a permanent headache for five or six weeks now. Everyone said it was probably sinus.
“It’s pretty bad.” I’d say.
“Yeah. Sinus can be bad.” They’d say.
Then at some point, I said it to Geoff.
“You’ve had a headache for six weeks and you’re only saying it now?”
I was sent to the GP. We have the best GP in Ireland but she was away that day and the locum said,
“Sounds like sinus.”
The next morning, a violent pain hurtled me out of sleep. If you’ve ever seen a slasher movie, with multiple unnecessary stabbings – this is what I felt was happening to my head. It was bad pain. Evil pain. Something is seriously wrong with me pain.
My own GP had returned and she sent me for a CT scan. The doctor that conducted the scan asked me questions. When did the pain start? How bad was it on a scale of 1-10? Did it actually wake me up? He and the nurse nodded. I waited in the waiting room until he walked out, gestured with his head that I should follow him and we stood together on the sidewalk outside the door of his unit in the private clinic complex. He explained that I had an AVM, an Arteriovenous Malformation on my brain. Think of it as a lesion; a bad lesion. It could bleed. I would need to go to my GP within the hour.
I looked around; it was a surreal moment, one of those ‘this isn’t supposed to be happening’ moments. I needed some familiar connection, someone to roll their eyes and say, ‘bullshit.’
“Well…should I be worried?” I asked. Now he looked around, as if there was a danger of us being overheard.
“Well…it’s your brain.” He said.
I cried all the way home on the Luas. Thinking about what the people on the Luas must be thinking about me: maybe she’s just heard she’s got cancer, she’s just come from the clinic, right? Man, how the tears flowed. Then I thought,
I can’t do this to Geoff. He’s at home with the kids, waiting to hear how much sinus medication is going to cost us.
I pulled myself together and walked home from the station. He opened the door. I burst out crying.
It took two months to get a bed in the hospital. The Hospital Registrar sent me home saying:
“Don’t exert yourself; don’t lift anything, not even your children. Don’t get stressed.”
That was hilarious. If he’d known my life situation at that time, he wouldn’t – couldn’t’ have said that.
“Don’t,” he said, with an entirely straight face, “get constipated.”
I thought about making some sort of joke, then thought, better not.
“Is there anything else you feel is relevant?” He asked.
“Well, I’ve been diagnosed with M.E.; Chronic Fatigue Syndrome.”
Without skipping a beat he said,
“We feel that’s over diagnosed in this country.”
I nodded. Put in my place. But I wanted to scream,
“Are you fucking kidding me? Do you think I have wanted to go to bed for two weeks at a time? Lying on the flat of my back and still not feel rested?”
The Professor in Vincent’s Hospital had diagnosed it.
“You’ve got stress induced chronic fatigue syndrome.” He’d said. “M.E.”
The Professor walked everywhere with a posse of doctors that looked adoringly at him. He was The Man.
“What…what will I do?” I asked him.
“Learn to live with it.” And off he went, flapping the bedside curtain out of his way with a practiced flourish; his posse looking back at me as if to remind me what a lucky bitch I was that he sat on my bed, took my hand, looked me in the eye.
When I look back – retrospect, you know – I believe it was a dreadful Winter Vomiting Bug that started all the trouble. One late afternoon, in the middle of a class, a wave of nausea that scared me. I sent the kids away and drove home quick as I could, and just in time. I was so violently ill that we needed to call a locum doctor out to give me some kind of injection to stop the vomiting and the rest. It was horrendous. I look back on that and I believe that it did untold damage; it stripped my immune system in one fell swoop, I’m sure of it. Every health problem I’ve had since has stemmed from that day – and anyone who spends time around me knows if I’m allergic or intolerant to many things, and I’ve had health issues of soap opera standing. That’s another story and a boring one to be honest; I hope I never write about it. But coincidentally, my brain lesion decided it was time to shine.
I was probably born with it. Giving birth to my third child probably brought it on, but no one knows for sure. But alongside all that, I had the remains of what Glandular Fever had done to me (I never knew I had it; it showed up in blood tests – but it made sense as to why I went from work to bed to work to bed for so long). I was so fucking tired I didn’t even realize I’d had a miscarriage. I told my friends when we were out one night, that my last period had been so heavy, I’d had to go to bed for two days, just to manage the bleeding. They looked at each other and then gently told me.
Of course I had. It fell into place. I’d even had morning sickness but I was in no fit state to recognize that. A miscarriage that I managed to miss. What did that do to me? I didn’t mourn the baby; I never knew it was there. And I was so tired; I couldn’t have coped with another child so soon after Ciara. I’ll be honest; I was relieved. I was working all the hours. I wasn’t eating properly; I was vegetarian and not looking after myself.
So glandular fever had impacted on my liver and the whole thing had culminated in giving me stress induced chronic fatigue syndrome.
“Why am I so tired, all the time?” I asked the Professor.
I remember thinking sometimes, if I get sick I can rest. Then I started thinking,
“If I get really sick, I can have a really long rest.”
Be careful what you ask for.
In July I was sweeping the floor after summer camp, bending down to pick up glitter and bright paper cut offs, noticing bad pain in my head. By September I was talking to my neurologist about brain surgery. And I wanted it; I wanted the damn thing out of my head. In between my warning not to get constipated and being admitted to hospital, I’d had some odd happenings. One day, I couldn’t read; I simply couldn’t get my head around the words. I knew I recognized them – I can even remember looking at the word ‘and’; thinking, ‘I know those symbols, I know what they mean, but right now, they’re just symbols.”
There is an exceptional TED talk called ‘Stroke of Insight’ which I urge you to watch because it is the most inspiring and comforting talk I have ever listened to; but also, when I watched the speaker, a brain scientist called Jill Bolte Taylor, I understood completely what she was saying as she described in scientist step by step terms what was going on in her brain as she was having a stroke. I know that; I thought. I have had that sensation.
I have had a few strange happenings with my brain. Geoff says it’s good to know that at least I do have a brain but I know he worried. The day they told us they wouldn’t operate, his relief was so palpable I was shocked. I had been rooting for it; I wanted the whole thing over. He, ever the realist, was relived beyond words. Pre hospital, during the waiting hours, when he’d come home late from a gig, he would check on me first thing, make sure I was breathing. Going to bed was – I won’t lie, a bit of a fear factor for me.
What if I have the haemorrhage while I’m asleep? What if I wake up dead?
And so began the habit of the glorious glasses of wine, pre sleep, to numb my senses. Geoff would hear me snoring soundly. Funny times.
Eventually, my treatment began. The operation wasn’t an option because my AVM was too close to my optic nerve, so blindness was a risk. And I was happy to start treatment; for too long I’d been the only one with ‘nothing’ wrong with me in our lovely ward. There was a night (none of us slept) when I broke down, embarrassed that I was in this ward; I didn’t have a brain tumour or spinal injury; what right did I have to be here?
“Emer,” said Patricia, “you are as much of a headcase as we are. And we all laughed. But it was true. Patricia’s tumour was benign but she still needed an operation. She was no longer the woman wound up in pain.
“What do you think of Colin Farrell?” She asked me once.
“I like him.” I said. He was in the hay day of his hooring days, so some people frowned at his name.
“I won’t have a bad word said against him.” She said. He’d visit the kids in hospital, at night, with no media and no posse. Quietly and respectfully. He sat with them and listened to them and did his best to make them laugh.
Patricia’s son had an entire room in their house, floor to ceiling, full of gifts that people had donated to him. People don’t like little children to have cancer. One day I met him. Patricia’s older sons – all in their twenties, were in the family room, and she called me, her three year old daughter in her arms. Come and meet her son, the boy who was nine, the boy in remission.
He had auburn hair and brown eyes and the gentlest soul I’ve ever encountered. Previous operations on the tumour that still lived in his head had not only blinded him, but left his head in a permanent tilt, so that he looked like he was always questioning what you’d said. The child took my hands when we were introduced and I understood that I was in the presence of pure raw goodness; I may have gasped, looked at Patricia, and she nodded, Yes, he really is that special. Folks, I held the hands of an angel, perhaps. I have never forgotten it. The woman that looked on at us and the woman who told me to fuck off the night she was admitted, were one and the same. She knew. And she knew.
The day before my treatment started, I was allowed out. My family came, took me to a restaurant, where I drank wine and sat my girls on my knee, and later, I went home for a short hour where I walked in my garden. I had a huge and giving lavender plant back then, since dead. The flowers were in full bloom. I had read a book about Alzheimer’s patients when my mother began to go down that road. It said they had done tests and lavender helped patients sleep; stopped the night terrors. I thought of Alice. Of all of us headcases. And I picked bunches of lavender for each bed. When I returned, I tied a bunch on the headboard of each bed.
“Emer, you’re pure gold.” Said Alice.
The nurses, sometimes grumpy from tiredness, walked in and stopped, noses in the air.
“What am I smelling?”
The lavender put everyone in a good mood. We were the ward that other patients visited because we smelled good. Everyone loves lavender. I was happy I did that. My treatment began the next day and my time in the ward was over.