Hey, everyone. This is Allēna, your ever-gracious super-admin (just kidding). I am here today to tell a special story by request of a friend. This is the tale of how we very nearly died the first and second times. We are masters at cheating death, and have quite the tragic backstory. My colleagues have also mentioned the fact that we had a stroke a few times. This post is the story of the stroke, or as we prefer to call it, the Brainhole. Now, I know that this is a crazy story. You might be tempted dismiss it as bullshit without witnesses or corroborating evidence. This is more than understandable. However, I have accounted for that and gathered some.
Apparently, we have followed in our father’s footsteps in a number of areas, and this blog is one of those areas. Our father, Xavier, maintained a website of his own for many years until his death in 2016. Eight accessed his account of our hospital stay leading up to the Brainhole incident in 1998 via the Internet Archive late in 2021. Although he has drawn the curtain and gone to sing with the choir invisible, he is our eyewitness for today’s tale, no séance required. Quotes from his account will be in italics.
Now, how the fuck were we cheating death as literal infants, you may ask? It all began with an unfortunate predicament known as viral myocarditis.
We Started Cheating Death Young When A Virus Attacked Our Heart
Xavier explained what happened best, so I will let him tell it. He wrote on January 27, 1998, at 3:00 in the afternoon:
Just wanted to let you know. My daughter is in children’s hospital in Dallas with acute myocarditis-an inflammation of the heart. It appears to be viral, and the prognosis can be good, but we will not know anything for 4 or 5 more days.
We will be up at the hospital for a while, so I won’t be current on my e-mail, but I will probably come home now and then and post updates.
We took her to the doctor’s office Monday morning at 9:30 because she had not been taking in fluids voluntarily for about 48 hours, and vomiting occasionally. She had a viral infection about three weeks ago that probably suppressed her immune response, and then contracted another virus that began to attack her heart muscle. Right now, the myocarditis seems to be principally viral in nature – as opposed to congenital, or congenital in combination with a virus. This is good. She is heavily sedated, and they have her on a ventilator. She can breathe on her own, but they are trying to let her dedicate all of her energy to fighting the infection. She has had two little transfusions (just to boost her hemocrit and hemoglobin levels by adding more red cells).
Stubborn Little Shits
We were admitted to Children’s in Dallas on January 26, 1998, Super Bowl Sunday of that year. Things quickly went south from there, though, and the doctors hooked us up to a heart-lung bypass machine so that our heart could rest and the machine could pump our blood for us. They initially estimated that it would only take about four days, but it quickly turned into a terrifying ordeal for all involved because we are stubborn little shits that kept fighting the damn sedatives. So it quickly turned into a game of hurry up and wait.
Eight quipped when he read through Xavier’s account the first time that he could make a drinking game out of it: take a shot for every time they had to chemically paralyze the body. You’d be absolutely hammered by the end of it. We got so good at fighting the sedatives that our medical team had to start putting us on some crazy dosages to even attempt to keep us down.
According to everything we were told growing up, we were on enough meds combined to knock out every single adult present for an untold number of hours. Xavier himself mentioned that a single one of our boluses (boli?) would incapacitate him for ten hours, and he was not a small man. We also had to be restrained by tiny handcuffs because we’d wake up, wiggle, get pissed off, and try to grab shit. Additionally, Xavier wrote in his account that we had to be put on methadone to ease the withdrawal symptoms from the painkillers they had us on. We were not going to die, by gods. We were cheating death every goddamned day. No day more so than February 23, 1998, a day we now “celebrate” annually as Brainhole…
All Hail The Motherfucking Brainhole
After getting off of heart-lung bypass and weaning off of most of the meds, we had a sepsis scare. Now, the scary thing about heart-lung bypass is that there’s a very high risk of stroke if things go wrong because the procedure uses a carotid artery to even work. After we were all finished with the heart-lung bypass, they had to clamp and tie off the carotid artery they used. They used the one on our right side. Shortly afterward, there was a sepsis scare.
Xavier tells the story of what happened best because he was there and documenting everything that happened, so I’m going to let him do the talking again. He wrote the following day, February 24, 1998:
“Brief synopsis of yesterday. It doesn’t look like it was sepsis. She got
better too quickly for it to have been sepsis. She responded well to the
intubation and the medicines, but the staff feels that this was an example of
how little cardiac reserve she has. In short, her heart was tested, and it
did not do very well on the test.
We met again with Dr. Fixler, the head cardiologist on the transplant team.
He informed us that [Hera] and I have the option of increasing her status on
the transplant list. Basically, if [Hera] and I feel that a transplant is
inevitable, we can ask that they not refuse a heart that is available.
That was yesterday.
[Hera] and I went home to get some decent sleep last night and left
instructions to call if anything happened. They called us at 3:30 a.m. to
tell us that she had taken herself off of the ventilator by pulling out the
tube. Her oxygen saturation level was fine, and she was breathing on her own.
Considering that [the cardiologist] wasn’t sure if she could
ever make it off of the ventilator, we took this as good news.
[The cardiologist] called at 7:30 this morning to say that [birth name] has apparently had
a stroke. The movement on her left side is diminished. The theory is:
[birth name]’s heart function is such that there are areas where the blood doesn’t
move as effectively as it should. When the blood pools, it has a tendency to
clot. A clot (or a piece of a larger clot) that had formed in her heart broke
free and plugged one of the vessels leading to her brain. Considering that
the major artery to the righ side of her brain is severed and tied off, the
clot either passed through the other artery, through the Circle of Willis, and
lodged in a vessel. Either that or it passed into one of the collateral
vessels on the right. They are not yet sure what the extent of the damage to
her brain was as yet. They are performing an echocardiogram to determine if
there is another clot in her heart, and they will perform a CT scan right
after. After that I we talk to the neurologist and find out what has
happened.
Names in brackets have been changed for privacy purposes.
The initial scan showed that we had lost up to half of our brain. However, a scan a bit later and an MRI in 2009 showed that it was only an eighth. We lost much of the sensory processing center in our right brain. It took years of physical and occupational therapy to be able to use the left side of our body even slightly. We still have trouble eating and sleeping. Our arms are noticeably different lengths, and we can only move three fingers on our left hand independently of the others.
Cheating Death and Betting On Ourselves
However, doctors thought we’d never even recover to a fraction of the extent we did. Nor did our own parents. Hell, Xavier even jokes in his next post about what sports we might be able to play with only one side of our body. Nobody really ever bet on us until adulthood. However, we always bet on ourselves. I went on to run a 5k in college and was an avid cyclist. I played basketball and bowled throughout high school. Eight and I were even training for a marathon before chronic pain and fatigue sidelined those dreams.
And though we were singing before we could talk – before the Brainhole ever happened – nobody thought we would ever learn an instrument, either. To hell with that bullshit. I fight people’s expectations of me just as hard as the tiny system fought those sedatives all those years ago. I went on to teach myself piano and ukulele, learned to produce records, and my headmates followed suit. To date, we’ve collectively produced fifteen records (that we can find). We’re hard at work on our sixteenth release. Moral of the story: if anyone tells you you can’t do something, flip the fucker the bird, then do it sixteen times and take pictures. These are the rules. I don’t make them. I just follow them.
Mirthy very belated Brainhole to all, and as always, stay tuned for more magic!
-Allēna
https://opensorceryy.co/cheating-death-the-first-couple-times-anyway/
#brainhole #disabilities #Hera #strokeSurvivor #texas #tragicBackstory #Xavier
Ashley Halliwell
