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Act 1 : A storm in my meninges

A stroke in my meninges
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.

                  

« 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. » [1]

              

The day isn’t over yet, but it’s time to relax. I have an appoint­ment with James [2], my com­pa­nion. We’re out in Paris, 15 km from the house. We entrus­ted our daugh­ter, Lena [3], 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.

                  

8:00 pm – Panic on board

aneurysm-rupture

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

stroke-emergencyThe 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

haemorrhage-in-my-brain

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

scanner-aneurysm01:00 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 taxi)

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

aneurysm-embolizationAs 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 and references
            

[1] TOLLE Eckhart, Nouvelle Terre, Québec : Ariane Editions, 2005, free trans­la­tion.
[2] The first name has been chan­ged.
[3] The first name has been chan­ged.
[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).

              




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