We reached a ticket kiosk at Paddington Station with enough time to realize we might make an earlier train. “If we take the 8:03, we’ll have an hour to add to our day.” My husband looked apprehensive, but that may have been related more to a ticket machine that didn’t always seem to function as intuitively as we expected. I turned to look at the status boards above the trains. “We can make it.”
Tickets in hand, we hurried toward our gate. A man to my left ran past in the same direction we were headed and with little thought, I followed suit. My husband quickly realized what was happening and ran ahead of me. At the ticket entry, he waited for me to catch up. Half drunk latte in one hand, a croissant in the other, and bundled in layers against the frigid morning, I pushed myself, feeling the dull thud of my heart in my chest. I wasn’t going to make it. We’d miss the train and it would be my fault for encouraging him to take an earlier one. A conductor yelled at us to enter the only door remaining open, well down the platform. Surely, they would wait for us.
As we stepped inside the car, the doors closed behind us and the train pulled away. My pulse pounded in my head. I needed to sit down, but the train was crowded. A woman sitting next a window, bags piled around her, looked up at me and I smiled. She encouraged me to sit. I motioned to my husband to sit across the aisle, facing me. I needed to calm myself. Slow, deep breaths would do it. I’d finish my latte, enjoy my croissant, and soon we would be in Oxford for the day, our vacation officially begun.
Unfortunately, that isn’t what happened.
Perhaps it began with the “companion flies free” ticket we earned from British Airways. I’d kept it in mind for a possible trip late this spring, but on a whim, decided to see when qualifying flights were available; it was well before the expiration date, but anything free usually comes with strings attached and I wanted to make sure we weren’t caught in them when it was too late to unravel them. I logged into our account and found a way to scan an entire year of flights. It didn’t take long to realize there were no available flights after February. In fact the only availability we could take advantage of was late in November, months before we expected to take a vacation.
We had just returned from Scotland a couple of months before. Did we really need to fly to London again so soon? I remember telling my husband we didn’t have to use the ticket. We could let it go because we had already earned another. We’d have more time to plan how to use that one since the expiration date was nearly two years away. But the idea of passing up something free was difficult to bear. Soon we were booked on a red eye flight departing the day after Thanksgiving.
With my focus on holiday meal planning, I procrastinated on packing. We had our eye on the weather so knew that as much as we would need winter clothing, the long term forecast seemed relatively warm. Packing the morning before our flight would be fine. It would be one of the least complicated trips we’d ever taken. I was looking forward to it. We had rented a lovely apartment in Holland Park, made reservations for a fabulous restaurant, and filled our day-to-day agenda with things to do that were new to us. Reservations for a tour of certain parts of the Bodleian Library in Oxford were only available on Sundays, so we’d hit the ground running once there.
Packing completed, the house tidied, reminders and important numbers written down, we had time to spare. All seemed well until we pulled up to the curb at the airport and my husband couldn’t find the jacket and sweater he planned to carry on board. I knew where they were—in our bedroom. He’d forgotten to pick them up when he took the luggage downstairs. He had a large overcoat packed, so I told him to forget about it. We could purchase a lighter jacket once we arrived. However, he needed confirmation that he had indeed neglected to collect them, and called our son. Yes, they were exactly where I’d placed them. Yes, our son would drive them to us as we waited outside.
No matter, I told my husband. We’ll just check off the “if anything can go wrong” box early on. It’s something we’ve done since the epic delay we experienced at Heathrow years ago. The levity usually helps when we find ourselves in a fix while traveling. Things happen sometimes, and often, they can’t be undone. Why waste energy grousing about what might have been instead of constructing a different plan?
Eleven hours to Heathrow, Heathrow Express to Paddington Station, a London cab to Holland Park and we were finally there. Soon we were unpacked and enjoying a late afternoon cup of tea next to a cozy fire. We’d planned on an evening walk to a nearby restaurant, and a stop at the Tesco Express for a few things for the week—milk, tea, cheese, crackers, and wine.
Early to bed, early to rise. The next day would be a long one.
I feel the chill in the air in spite of my layered clothing. Most likely, I’d worked up a sweat running for the train. My pulse continues to escalate regardless of what I do. I feel disoriented. Something isn’t right.
Breathe in, breathe out. Instant crippling pain bursts in my head. Strands shoot upward from the base of my skull pulsing at the crown in tandem with my heartbeat. It’s as if a large bird of prey has grasped my head in its talons. I lean forward thinking my head should be between my knees.
Breathe in, breathe out. I try to center myself, but panic builds. Nausea uncurls in my stomach and I wonder if there is a restroom nearby. Will I be able to get up and walk to wherever it is? My husband is saying something to me, but I can only motion to him from my position, doubled over, eyes clamped shut, ears ringing. I feel movement across from me and soon he’s there, taking the croissant and latte from me. I grasp my head with both hands, pressing with fingertips, massaging the unrelenting, rhythmical pain, willing it to subside.
Breathe in, breathe out. I wonder if I’m having a stroke and wiggle my toes, questioning if both feet are responding similarly. I wonder if other passengers are looking away from me, feeling awkward. Someone pats my back, uttering “poor dear”. My husband asks me something but I shake my head no. I can’t focus on anything but what is going on in my head. I feel his hands on mine. They’re warm and soft. I try to divert my attention away from my place on this train. Green hills. I’m out on a long walk. Quiet. But it isn’t. My head bangs loudly. It’s a balloon that expands and contracts and I’m waiting for it to burst. I wonder if I will collapse in the aisle. I wonder if I’m going to die on this train.
Breathe in, breathe out. Sharp bursts of intense light to my left intensify the pain. I realize it’s the sun, shooting through the window, strobe like. The woman next to me asks if I’d like some paracetamol. I peer at her watery silhouette through one eye long enough to ask what it is before thanking her. Headache tablets, she explains and hands them to my husband. He passes me the dregs of his cold tea to wash them down. A speaker announces the next stop—Maidenhead. We’re half way to Oxford. Should I get off the train? I want to lie down, but where? I’m hot and clammy, and begin peeling off my layers; my coat, scarf, hat and gloves are all taken away. I pull the turtleneck sweater away from my throat, hoping I’ll be able to breathe more easily.
Breathe in, breathe out. I hear my husband making casual conversation with the woman next to me, asking about where she’s headed. Listening to them helps me think about something outside of my head. He squeezes my hands from time to time, expecting me to respond. First one, then the other. The pills have taken the razor’s edge off the pain. It’s a constant dull ache now, a too tight cap that fits over my head. I wonder how this has happened. Oxford station is called. The woman offers a personal contact should we need assistance. Somehow, I’m layered in clothing once again and stepping off the train. I notice salt on the platform. My husband has my arm and steers me toward a bench where others are huddled against the freezing cold. I tell him I need water and want to sit inside where it’s warm. He leaves me at a table by myself, my back positioned against the others who are drinking tea, reading papers, waiting for their train. The warmth of the room calms me. I drink the water, measure the pain in my head for the hundredth time.
I tell my husband I want to go to the hospital.
A sudden onset headache is taken very seriously—especially when there has been no history of headaches. Over the next several days, I lost track of how many times I was asked to tell the story. “I was running for a train…” Of how many times I was asked to perform a series of simple physical tests used to determine whether I had suffered a stroke. At 9:59 am, not quite two hours after I’d boarded the train to Oxford that morning, I was admitted to A&E (accident and emergency) at John Radcliffe Hospital with a California driver’s license and a Blue Shield health insurance card. Although the doctors’ first impression was “likely a migrainous phenomenon”, it was recommended that other concerns be eliminated. While I was waiting, I experienced an odd type of tunnel vision, somewhat like a white vignette around the periphery of my vision. Then, the sensation of a cold wash poured from my head to my legs. I thought I was going to lose consciousness. I was provided a bed immediately, then wheeled several different places throughout the rest of the day. An IV cannula was inserted, CT scans of my head taken, and assessment by neurosurgery completed. I was under observation for hours, my blood pressure carefully monitored, and pain medication given to assist with the persistent headache. It wasn’t until midnight that it was decided I’d be admitted. As if the experience hadn’t been real enough, it was about to become more intense.
I don’t remember which doctor explained they found a hemorrhage in my brain, although a small one. The scan showed “sulcal hyperdensity in the left parieto-occipital region which, in conjunction with a history of sudden onset of headache, is suggestive of acute subarachnoid hemorrhage.” I do remember feeling conflicted about this news. I was oddly relieved that someone had identified a real problem. I knew I had a problem, but it wasn’t visible to anyone else. I looked fine, with the exception of my eyes which I discovered later were completely bloodshot. The discomfort and uncertainty that comes with hearing there was bleeding in my brain was sobering, but I don’t remember feeling fearful. Outside of noticing that my hearing and sight were hypersensitive, and that there were occasional flashes of light in one eye and a general blurriness in both, everything else seemed fine as well—minus the persistent headache. Surely, the need to admit me was a precaution.
We were an hour away from London and had expected to be back in the apartment hours ago, readying ourselves for another day of vacation ahead. Although we were in fair spirits considering our ordeal, our phones were running low and we had no rechargers. There were family and friends to be contacted, insurance matters to contend with, and cancellations to make. I couldn’t help my husband with any of it. After being together through it all, once I was rolled into the neurosurgical ward, he was told he couldn’t stay. It was a women only ward. A hotel wasn’t possible as it was after 1:00 am by that time. He would end up spending the night in a small, dark room sleeping on two chairs he had pulled together. But before he left, we had one more visit from a doctor.
The solemn young man spoke in a hushed tone as he asked to sit at the foot of my bed. He explained that my condition was very serious. I was lucky to be alive. That 40% of people die before making it to the hospital. I was immediately confused. The light mood I had managed to construct and clung to evaporated instantly. How had we gotten from “but it’s a small hemorrhage” to being lucky I wasn’t dead? He continued by saying I would need to remain calm. That I was to rest and avoid emotional upset. I was angry at that point which only made him state more emphatically that it was imperative that I do whatever I could to be still.
We were stunned.
I was left to myself.
Once again I tried to find a place in my confused mind to be at peace. Nurses did what they could to console me, checking on my medication, bringing blankets, offering tea or cocoa, ice water. When the lights were finally out, I could only stare at the faint, pastel plaid of the curtain that surrounded my bed and listen to the various humming and bleeping of monitors connected to other patients in the ward. My own saline drip tapped rhythmically to a River Dance sequence on loop. I’m not sure whether I ever completely fell asleep. At some point, a neurosurgeon came through the curtains and explained that there would be an MRA—or if necessary, an angiogram. They would insert a catheter into my upper thigh and thread it to my carotid artery where a contrast dye would be released. Imaging would be clearer. It would happen later that morning. And the risks, I asked? Stroke. But less than leaving an aneurysm to burst. He smiled and was gone. It was as if he hadn’t been there at all.
Stay calm. Think of something pleasant.
Nothing emotional. Not about which part of my head will be shaved. Will my entire head be shaved? Think about the beach. About wading into rushing salt water on a sunny day. Toes wiggle in sand, cool and wet. Feet sink into it. The tide ebbs and flows. Roaring surf lulls.
I hear the rattle of the blood pressure cart being wheeled through the ward door, the lilting accent of the nurse’s voice. My curtain is pulled back. The distraction is welcome.
It was decided there was no aneurysm. Instead, all signs led to a diagnosis of Reversible Cerebral Vasoconstriction Syndrome (RCVS). It’s unclear what causes it, but there are distinguishing characteristics. There would be no need for surgery. Instead, observation, bedrest, and medication to alleviate pain and keep blood pressure in check. The likelihood of another Thunderclap Headache (TCH) was probable in the first three weeks following the initial headache—not something I wanted to experience ever again.
For the next several days, my husband had to return to the apartment in Holland Park. A taxi delivered him to the train station in Oxford, the train to Paddington Station, the Underground to Holland Park, then the reverse for visiting hours from 3:00 until 8:00. When he wasn’t with me, he worked with the hospital insurance liaison to connect with our insurance company. He contacted British Airways to cancel our flight home and find out what it would take to reschedule without a definitive date. He kept a list of questions about my condition so I wouldn’t forget anything when the doctors made their rounds. He also took the time to go for a walk in Holland Park because I wouldn’t be able to, and took many photos on my behalf.
A second TCH occurred in the very early hours of my fourth day in the hospital. I woke to go to the bathroom, and it struck as I was getting back into bed. No running, no doing anything strenuous. It was more intense than the first and caused my extremities to shake uncontrollably. My blood pressure shot to an alarming level. Efforts to focus and calm myself failed again and again. Pain medication changed from paracetamol to codeine, and then to morphine. Hours later, my headache had not subsided. As before, the throbbing spikes had transitioned into an unrelenting, dull pressure. A nursing assistant brought more blankets, ear plugs to deaden the ward noise, a mask to cover my eyes. I nodded off only until another group of Neurosurgical doctors surrounded my bed just before noon. I remember that one was talking to me, but I couldn’t hear what he was saying. An assistant typed as he spoke, her laptop positioned on a wheeled platform.
Evidently, I was being transferred to the Neurology department.
After being in a busy ward for nearly a week, the near emptiness of the ward in Neuro was depressing. A sole woman occupied a bed in the corner across the room from mine; she was quite frail and elderly. She moaned in her sleep throughout the night and resisted all efforts to feed her, provide water, or give her medication. Thankfully, I was able to do all of that for myself. I realized many times each day that the opposite might have been true. The window to my left was a definite consolation considering I’d been staring at a ceiling for the better part of a week. The irony of the cemetery on the gentle rise directly beyond my window was not lost on me. I watched the weather change across the hills in the distance and cemetery visitors come and go. I couldn’t sleep so buried myself in research about my condition and looked forward to the tea cart every few hours or so, its cups and saucers jangling against stainless steel well ahead of its arrival.
“Tea for you my darling?” the attendant would ask, his English accented. And as he poured, “Sugar? One or two?”
I’d remain in the hospital for several days more, the question of whether or when I could board a plane for the flight home an ongoing topic of discussion. The chances that I would have another TCH onboard were high, and that was something everyone wanted to avoid. I was released a week after being admitted with the advice that I must rest somewhere locally for one more week. Should another episode occur, I was to report back to A&E immediately. I was provided the Consultant Neurologist’s cell number and encouraged to call him should I need anything.
I had all the medication I needed to last me through the month. All I wanted at this point was quiet, uninterrupted sleep.
To be continued…