The Unspeakable (27 page)

But the brain infection is not even the main event at this moment. The most pressing issue is that sepsis in my bloodstream has given me something called disseminated intravascular coagulation, or DIC. This means that clots have formed throughout my small vessels and blocked blood flow. The clotting is using up my platelets and creating a risk of massive internal bleeding or external bleeding through the nose or mouth or from under the skin. DIC is a life-threatening condition. Also, my liver and kidneys are now failing.

To complicate things further, I need to undergo a lumbar puncture, or spinal tap, in order to extract central nervous system fluids that will hopefully provide some better clues as to what is wrong with me. But it's dangerous to do a spinal tap on a patient whose platelet count is as low as mine. At first, the doctors decide to delay the lumbar puncture until I receive more platelet transfusions. But when my neck begins to stiffen and my blood-work numbers worsen they confer around midnight and decide they have no choice. My husband is shown a consent form saying he understands that the procedure carries the risk of spontaneous internal bleeding that could lead to permanent paralysis or death. It is explained to him that given how sick I am there's a chance of these outcomes happening anyway. On the other hand, it's also possible that testing the central nervous system fluids will yield no information. My husband, who has never so much as borrowed my credit card and forged my signature, must make the final decision whether or not to proceed. By now, my brother, who lives in town, is at the hospital and my father is on a plane from New York. My husband signs the form. A transport team comes and wheels me away.

Fifteen minutes later they bring me back. My husband and brother ask how it went and are told it didn't go at all. The doctors decided the procedure was too risky after all. Because it's the middle of the night they do not have access to the imaging equipment that could potentially minimize any complications. They will wait until morning. My husband starts to wonder if I'd be better off at a larger hospital, like UCLA or Cedars-Sinai. Despite the hour, he starts calling anyone he can think of who might have a connection to a blood or brain specialist in Los Angeles. He gets someone on the phone who listens to his story and tells him it probably doesn't make a difference at this point. I'm better off staying where I am.

October 29, 2010

8:02 a.m.

Patient intubated and sedated. Febrile overnight, presence of nuchal rigidity.

Highest temp 102.4F. Tachycardiac. On ventilator.

 

IMPRESSIONS:

Uncertain if she still has pre-renal azotemia due to sepsis.

Most likely intrinsic renal disease, consider small vessel occlusive disease, catastrophic antiphosiphoid syndrome seems possible but unlikely.

 

Plan:

Perform lumbar puncture with fluoroscopy.

Continue hemodynamic monitoring and neuro checks every 2 hours.

 

Medications:

Ampicillin, Vancomycin, Ceftriaxone, Acyclovir.

 

Notes: This is a complicated and challenging case. Likely with mosquito bite encephalopathy (West Nile Virus vs. St. Louis, Eastern Equine, Japanese) complicated by sepsis and DIC.

As a child I often harbored the thought that I wasn't actually living my life but instead subsisting in a vegetative state. In this state, the events I experienced as reality were merely hallucinations that scrolled through my consciousness while I was strapped to a bed somewhere, saliva dribbling down my chin as my body matured and then grew old over loose bands of atrophied muscles. In other words, I imagined myself as I am at this very moment, a swollen, waxy encasement of failed and failing organ systems, the subject of whispered conversations among family members in the hallways and an occasion for frozen lasagnas left for my husband on the porch steps. I imagined myself as both the author of my life and a total nonparticipant in it.

In the future, which is to say after I emerge from this coma and leave this hospital and return to my life, I will still occasionally indulge this scenario, though what I'll wonder is whether I actually ever got out of this bed. I'll wonder if it's possible that I never recovered from the ordeal of late October 2010 but instead slipped from a medically induced coma into a real coma and remained there for years. From there, the life I would have lived will reside solely in my mind. All that's happened since then—all the meals and holidays and arguments in the car, all the boxes packed and unpacked, all the people and pets buried and cremated, all the revolutions of the warming earth around the unblinking sun—will be nothing more than vivid, interminable dreams. Meanwhile, my family will endure a living hell in which there is no legal avenue for removing my feeding tube or otherwise hastening my death.

Weeks from now, my husband will tell me that the outcome he feared most was that I would wake up and be severely impaired. He feared that I wouldn't be the same person. He will tell me that when the doctors told him there was a chance I'd need years of cognitive rehabilitation and, even then, there were no guarantees, he thought that as much as he didn't want me to die that if the worst-case scenario came true it was perhaps better if I did. I will find this all very disturbing but also be in complete agreement. The worst-case scenario would not have been dying. It would have been remaining partially alive.

This period of grim prognosis lasts approximately forty-eight hours. During this time, a friend is charged with the task of getting regular updates from my husband and e-mailing those updates to all of my other friends. The names of these friends have been culled largely from the address book on my cell phone, which contains not just close associates but also people I haven't spoken with in years or, in some cases, people I barely know but whose contact information happens to be in my phone. The result is that everyone from my best friend to my college roommate to a Pilates trainer I worked with exactly once is receiving e-mails about my platelet count. Some are replying. Some are sending flowers and food and calling my husband incessantly. Some are showing up at the hospital even though they can't enter the intensive care unit and forcing my husband to come out and deal with them. Some are preparing themselves for news that I have died. Some are thinking it can't possibly be as serious as these updates are suggesting.

Some are praying, even some you wouldn't expect it from. A dear friend who's a conservative evangelical Christian has got her husband and her kids and her Bible study group and most of her church begging Jesus to heal me. But there are others, too. Secularists in Brooklyn apartments and Florida condos and midcentury-modern houses in hip Los Angeles neighborhoods are holding their heads in their hands and murmuring. They say they're praying for me but chances are they're really praying for themselves. They're praying that whatever is happening to me never happens to them or anyone they share a bed with or tuck into bed at night. Which is exactly what I'd be praying for in their situation.

Some are concocting strange fantasies about caring for me. One will admit later that she imagined feeding me with a spoon and rubbing my back while teaching me how to say “cat” and “dog.” My best friend, who for years has joked about someday writing a memoir called “Dead Meghan” so as to join the esteemed ranks of female writers spilling the secrets of writer best friends who die prematurely, tries to cheer up my husband by saying she hasn't started the book yet.

“I'm optimistic for her recovery,” she says. “Otherwise I'd be on page ten by now.”

My husband thinks this is funny. Apparently, he actually laughs. I have married the right man. I have married a man who has followed every step of my clinical course and engaged with medical personnel on a sometimes excruciatingly detailed level and yet still laughed at this joke. Also, I have a best friend who is capable of uncommon humor and deep humanity. In the past I have forgotten this from time to time but when I wake up I will know it more than I've ever known it. When I wake up I will tell myself I'll never forget it again, though of course I will.

October 30, 2010

6:00 a.m.

Patient still intubated/sedated.

CFS consistent with a viral process or partially bacterial process (probably less likely).

Neck supple again, the nuchal rigidity of last p.m. is much better, scattered purpura on dorsal of hands, feet warmer and better perfused.

A few months from now I will visit my evangelist Christian friend and her husband will pull me aside and tell me how great it is to see me and how worried they were when I was sick.

“You had a lot of people praying for you,” he'll say.

“I know,” I'll say. “And I really appreciate it.”

“I mean, a
lot
of people,” he'll say.

“Yes. It was great. Really nice.”

“I'm just wondering,” he'll say, “if it's changed the way you think about things. If you've given any more thought to faith and the power of prayer.”

I will be caught so off guard that I'll say something not only insufficient but ridiculously out of character. I will say that a lot of people were praying who didn't necessarily do so regularly and that there must have been a lot of “healing energy” going on. I will feel like a total ingrate. To these friends, my failure to become a follower of Jesus—to even show a sliver of interest in Jesus—in the wake of my miraculous survival must be the ultimate slap in the face. It's as if I commissioned them for a job and then refused to pay even when they delivered excellent service ahead of schedule.

Other people will ask me what it's like to nearly die. Is there a light? Did I feel the presence of divine or otherworldy love? Did I make a conscious decision to “fight back and live?” I won't know what to say to that, either. The only thing I'll be able to say is that it was like nothing. In this particular situation at least, dying would have been like falling off a log. Actually, it wouldn't even have been that dramatic. It would have been like flipping a light switch when your eyes are already closed. It would have merely been a matter of going from unconsciousness to nonexistence. For years afterward, that will be the thing that scares me most: that I could have just as easily slipped that way as this. “If anyone asks, tell them dying is hard,” my mother said to me in her last weeks. For me, at least in late October 2010, dying would have been a piece of cake.

October 31, 2010

9:02 a.m.

Attempted to wake patient up, sedation at minimum, patient moves around but does not follow commands.

 

11:00 a.m.

Off propofol since 9 a.m. Patient moving extremities but not responding to verbal stimulation.

Later I will find out the neurologist is yelling, “Wake up!” directly in front of my face and I am not responding. This is of particular concern because meningoencephalitis can cause deafness. My husband will tell me that they're getting out my iPod and putting the buds in my ears and blasting Joni Mitchell (as if Joni is the kind of artist you can “blast”) and still not getting a reaction. I will find this both highly disturbing and strangely mortifying.

November 1, 2010

4:30 a.m.

Patient agitated, eyes open, not fully conscious.

Patient appears to have made positive progress, fever reducing.

 

9:01 a.m.

Awake, follows commands.

 

11:20 a.m.

Follows commands, sort of oriented, knows name.

When asked what year it is states “2011.”

Knows she's in hospital but cannot name which one.

When prompted “Huntington” she says “gardens/beach.”

It's morning. Last night they took my toenail polish off and now I'm waking up. At least that's the situation as far as I'm concerned. They're telling me that four days have passed, but this doesn't compute even slightly. The last four days don't exist for me, though they will haunt my husband for the rest of his life. I see my father standing over my bed and think he must have just arrived on an early flight.

Someone is asking me what year it is and I am saying it's 2011 and not 2010. The hospital is called Huntington but there is also a Huntington Botanical Gardens and, more relevant to me, a Huntington Beach, where dogs can run off-leash and where I've taken my dog and watched him roll in the sand in pure canine ecstasy. So when they say “Huntington” I say “Beach.” In a few days my husband will bring in a photo of the dog and put it near my bed where I can see it at all times.

Five days from now, when I'm still in the hospital but no longer in the ICU, the test from the central nervous system fluid will come back positive for murine typhus. This will mean that my infection is bacterial rather than viral. It will mean that it wasn't the mosquito that made me sick (or herpes or Japanese spotted fever or leptospirosis or HIV or any of the other candidates) but, rather, the flea feces that I embedded in myself when I scratched my feet. The fleas are living on rats and opposums in the overgrown yard of the rental house and they got on the dog and then on me. This will be reported to the county health department and someday I'll even record a “survivor's testimony” video for a flea-borne-typhus symposium at the Mosquito and Vector Control Association of California's annual meeting. In the meantime, the doctors will remain mystified by how I managed to get so sick from something that usually just gives people flu symptoms for a few days and then goes away. Moreover, they will be shocked at how quickly I got better. It will be as if grave illness were a deep swimming hole I plunged down to the bottom of and then shot back out of at the last possible second. They will tell me I scared them. A patient care coordinator who read my chart when I was in the ICU will come into my room and tell me that it's quite literally a miracle that I've recovered. The neurologist will also use the word
miracle
. This will give me chills. Neurologists shouldn't use words like
miracle
. Only evangelical Christians should. And even then they should choose their audiences wisely.