Act 1 : A storm in my meninges
NOVEMBER 17, 2018 (updated on November 17, 2023)
Table of contents
December 19, 2013, 7:30 pm – I’m at the bakery, waiting my turn to buy a sandwich. My head seems heavy. Maybe it’s because I don’t feel good in this place, it’s crowded and it’s hot. Maybe because I’ve had an intense day, full of excitement. I met people from different backgrounds, I went from one meeting to the next: I feel like I’ve lived five days in one. For all these reasons, at least, I need to take some fresh air. So as soon as I have my sandwich, I go out for a few deep breaths of oxygen… which soothes me.
The day isn’t over yet, but it’s time to relax. I have an appointment with James [1], my companion. We’re out in Paris, 15 km from the house. We entrusted our daughter, Lena [2], to the care of a friend for the evening. Curiously, and for the first time in over four months, Lena did not want – or was unable – to take a nap this afternoon at her nanny’s house.
7:59 pm – I just spoke to James on the phone, he’s on his way.
“Life gives you any experience that is most helpful for the evolution of your consciousness. How do you know this is the experience you need? Because that’s the experience you’re having right now.”
8:00 pm – Panic on board
An aneurysm has just ruptured and caused bleeding in the right hemisphere of my head, in my meninges. The meninges lie between the skull and the brain. This is the tissue that surrounds and protects the central nervous system. Any loss of blood in the meninges forms a hematoma that causes pressure inside the skull. Since it is inextensible, the hematoma compresses the brain. That’s why, even though at the moment I’m very far from realizing what’s really going on in my body, I feel a violent and sudden headache. Something unusual is happening. The suddenness and the intensity of the pain completely focuses my thoughts on this state of affairs.
A sharp and seizing pain
Although my body doesn’t send me any other worrying signals, I prefer to sit on the little sidewalk right next to it to wait for James : if I have to faint, I’ll fall from a lower height. It occurs to me that I may be having the first migraine of my life. But how can I be sure since I’ve never had one? I don’t have paracetamol with me and even if I did, I have a hard time convincing myself that such a drug could stop this acute and seizing pain. Fear begins to win me over: I’m all alone, sitting on a sidewalk, and I can potentially lose consciousness.
Though, I don’t feel like that’s going to happen to me. But, just in case and before it’s too late to do so, I’m trying to get James on the phone. No answer. Even though I know he’s going to be here soon, I’d prefer that he knows what’s going on as soon as possible. My situation may be an emergency. So I call again – maybe ten times – and finally he answers. In front of my insistence to come near me, he drops the purchase of his sandwich.
8:10 pm – A salutary intuition
He’s finally here and he’s taking me to sit on the terrace of the nearest cafe. He asks me what my symptoms are. At that moment, I still have an unbelievable headache, but also a slight nausea and tingling in my hands. Later, he will tell me that he immediately thought of a stroke. I’m grateful that he didn’t tell me at the time, because I were really far from thinking about that. And considering that perspective would have probably made me experience things very differently. But did he himself want to believe in the possibility? Probably not, and that’s surely the reason why he didn’t talk.
The fact remains that given my condition and my obvious lack of assurance to get moving, he considers two options : take a taxi, go home and monitor the situation, or call the emergency directly. It’s hard for me to choose one or the other of these possibilities : it’s hard enough to accept the fact that the evening is ruined, but to think that something serious could happen to me… it seems almost impossible. James finally decides to play it safe by calling the firemen. So determined that I surrender.
8:25 pm – Help is on its way
The firemen coming and getting us into their truck. They ask me a series of questions. I’m concentrating on answering rather than focusing on my headache. I hear myself saying “no” to everything, which basically means: no coffee, no cigarettes, almost no alcohol, no cholesterol, no hypertension, no medical or family history, no photophobia, no hypoglycemia… By the way, checks done, my blood sugar and blood pressure are normal.
Are they in a position to suspect a stroke? I don’t know. However, they make the decision to take me to the emergency service. At the hospital, I’m on a gurney. James stays with me while the firemen report to the front desk. In retrospect, I’m still astonished that I wasn’t sent home with paracetamol, as is unfortunately the case for some people who found themselves in my case, truly in danger. After all, on paper I “just” had a very strong headache, some nausea and some fleeting tingling in my hands.
However, my case should not be considered as urgent because it is only more than 2.5 hours after our arrival that a doctor finally comes to take care of me.
11:10 pm – The assessment of pain
The doctor invites me to tell him what happened, and asks me the same questions as his predecessors. Then he asks me to rate the intensity of the pain I feel in my head on a scale of 0 to 10, where 0 is “you have no pain at all” and 10 is “your eyes are being gouged out”. I feel very far from 0, that’s for sure. And I don’t know what to do with the 10 for the good and simple reason that I’ve never had my eyes gouged out ! It is really complicated for me to answer because I would like to be precise in order to guide him in his diagnosis, but his scale only speaks to me halfway.
If I had to spontaneously describe my suffering, I would say that I have childbirth pains in my head. But I doubt that this comparison can have any relevance, given that the person in front of me is a man. So I decide to weigh the two propositions: is the pain of childbirth equivalent to having an eye pulled out ? Not sure… I choose 7. In fact I hesitate a little with 8, but as I can’t be precise, I choose my favorite number!
11:45 pm – The diagnosis falls: meningeal hemorrhage
He informs me then that I’m going to pass a scan. I have no memory of that exam. All I remember is the intern coming in to tell me the result: subarachnoid hemorrhage. At the time she is saying these words, this diagnosis means nothing to me, and certainly not stroke. In front of my probably interrogative air, she tries a more down-to-earth explanation: “There was a small bleed in your head and we will have to intervene to “repair” the damaged vessel“.
To do this, she tells me that there are two scenarios. The first, and preferable, is embolization, which involves passing a microcatheter through the artery from the groin to the damaged vessel. This device contains platinum coils that will be inserted into the aneurysmal sac and rolled up to seal it. However, there are several reasons why this procedure may not be appropriate: the size of the aneurysm, its location, its shape… If this is the case, the neurosurgeon considers an alternative, namely surgery to clip the neck of the aneurysm. In both cases, the goal is to prevent further bleeding.
One diagnosis, two versions of the facts
The way she presents things to me, I get the impression that it’s not so bad after all. I’m asking her if my partner has been kept informed, and just a few rooms away from there, he’s being told what’s going on…but not really in the same way. A doctor tells him that I had a stroke, and although I seem to be doing quite well and talking consistently, this is a serious case with the potential to put my life at risk.
Of course, he is strongly advised not to give me that version of the facts, and it is certainly better that way. In the meantime, he’s already seeing himself raising Lena on his own. For my part, I am thinking of her, of course. I didn’t even have time to warn her, I don’t know how long I’m not going to see her, but at no time do I imagine spending Christmas without her…
Recurrent hemorrhage
01:00 am – Five hours after the bleeding started, we only have a scanner. My good fortune is that, unlike ischemic stroke [4], meningeal hemorrhage allows the optimum intervention time of 3 hours to be theoretically somewhat longer. For physiological reasons, the bleeding stops spontaneously after a few minutes. However, this form of stroke remains a life-threatening emergency, as a second bleed can occur at any time. However, its incidence is only 4% in the first 24 hours.
My bad luck is I was in the top 4% of repeat offenders. And in a particularly short period of time since the aneurysm bled again while I was in the ER. Statistically, this hemorrhagic recurrence is more serious than the initial bleeding: it considerably increases the risk of mortality, which is then around 70%. That is why we have prevent it from happening somehow or other.
My miracle is that the bleeding also stopped, defying all statistics.
5:00 am – Panic on board (of the cab)
Eventually, the embolization was performed the same night. I was transferred to another hospital, equipped to handle neurosurgical cases. The only thing I remember is that James followed the ambulance in a taxi.
He won’t leave the hospital until around 4:30 in the morning, because I’m asking him to go home : he has to get some sleep and take care of Lena in the morning before dropping her off at the nanny’s. For the time being, his son has come to sleep at home so that Lena is not alone and our friend can go home. That way, James didn’t have to warn them about the situation at the time. The only people he tried to reach after he got the scanner results were my parents. He called on every possible phone, and without any answer, left two messages, one on each cell phone.
He’ll end up taking a cab home. Who knows why, when he only travels by scooter, he chose at the last moment to come by public transport. For some reason, the last thing I said to him that morning was, “Don’t forget my helmet“. Strange message for an upcoming stroke… Anyway, good thing he changed his mind, at least he didn’t have to drive home. But he was not out of the woods. Through his nervous, even dangerous driving, his one-night stand driver managed the feat of making him forget the dark hours he had just experienced. On the way home, he wondered if he was going to go home unharmed. To the end, that night was the worst of his life.
Aneurysm embolization
As for me, I only remember the neurosurgeon from the second hospital. This man inspired me confidence, he calmly explained to me what he was going to do, before starting the general anesthesia. I also remember the nurse who was there when I woke up. She asked me what I was studying at university. At the time, I wondered if she had been instructed to give me some sort of post-stroke test to check if I had recovered fully. But no, she just thought I was well under 38. The second thing that struck me was when she told me that it was “very rare“ for a hemorrhage of this nature – i.e., recurrent – to stop spontaneously.
In the end, I wouldn’t have spent Christmas with my daughter that year, nor New Year’s Eve… Nevertheless, Lena was exceptionally authorized by the medical team to come and see me once during my 15 days of hospitalization. It was a moment of intense emotion, a great joy to hold her close to me, as much as a great sadness to see her leave.
However, this hospitalization delay was necessary for three reasons. First, an increased risk of vasospasm was to be prevented. This is a frequent and serious complication which, when it occurs, after 3 to 5 days, can leave permanent after-effects in a third of cases, or even lead to a life-threatening ischemic phenomenon [5]. Secondly, we had to make sure that my health was stable, and thirdly, we had to make sure that the blood had completely resorbed in my meninges.
Beyond statistics
In the end, I came home with no after-effects. I went back to work just three short months after the stroke, until my tiredness disappears and I regain regular sleep. The doctor who examined me at the time was himself surprised to give me such an authorization so early: “So you defied the statistics both ways” he told me. Indeed, as much as I had no risk factors, I recovered completely and quickly.
That was my experience on December 19, 2013. Or rather, this is the version of the facts that I still tell some people today, depending on how close we are or how open we are, or not, in our exchanges. While it is generally fairly easy to conceive that, having come very close to death, I can now have a different relationship to life, one is not necessarily ready to hear more.
To really perceive the impact of this experience on my consciousness, a second level of reading is necessary. A level that takes into account “the experience that occurred in the experience”. A level that requires opening the door of presence.
Notes & references
[1] The first name has been changed.
[2] The first name has been changed.
[3] TOLLE Eckhart, Nouvelle Terre, Québec : Ariane Editions, 2005, free translation.
[4] Ischemic stroke is caused by a blood clot obstructing an artery.
[5] Neurosurgeon Eben Alexander explains that he “spent two years studying cerebral vasospasm, a very serious complication of subarachnoid hemorrhage (…) and one that incapacitates or kills about one-third of patients who survive the hemorrhage itself.” (Voyage d’un neurochirurgien au cœur de la conscience, France: Guy Trédaniel éditeur, 2018, p.105, free translation).
On the same theme
