Home » Chiari Malformation » What Doesn’t Kill Us . . . Makes Us Want to Kill Ourselves, Part 2–Jake’s Chiari Malformation

What Doesn’t Kill Us . . . Makes Us Want to Kill Ourselves, Part 2–Jake’s Chiari Malformation

One of the most beautiful people I know is my friend Denise.  We’ve known each other since we were little kids and became closer when we were both in high school.  We call each other Cher Cher.  The reason is absolutely absurd, but the nickname’s stuck since high school, about 15 years ago.  Even my dad calls her Cher Cher!

1995.11.03 Pudding Pool Party 008

Cher Cher and me, November 1995  (And yes, we’ve both always been this strange)

1996.06.00 Dan's Dance

Her sister Lauren, me, and Cher Cher–June 1996

Calling her “Denise” just seems odd.  Kinda like when you were a child and your mother was mad at you, so she sternly called you by your first and middle name as a way to show you exactly how angry she was!  (Or, in my mother’s case–because she had to cope with more stress than any mother I’ve never known–sternly called you by the name of the family dog, by the name of your uncle, or by the name of your step-brother’s half-brother.  Which is awesome because all three were male and you were–and still are–female) It felt unnatural for your mother to call you by your first and middle name.  It feels the same way when I call her “Denise”.

I’ve always felt very protective of Cher Cher.  It’s strange–I’m only two years older than her, but I’ve always felt very maternal towards her.  We have a pseudo-mother-daughter relationship/friendship.  I don’t know how else to explain it.

Two years ago, her husband (who is so unbelievably madly in love with her) posted a message on Facebook, looking for any ideas as to what he could do to alleviate the pain of his wife’s chronic migraines.  They had tried everything–they had removed every bit of mold from their house, refinished the basement, gotten a new hypoallergenic mattress–and yet Denise continued to suffer from debilitating headaches.  Her husband felt helpless as he watched Denise become bedridden for days at a time.  Quite honestly, I didn’t take it all that seriously.  I thought ‘Well this has got DEPRESSION written all over it!  She just needs a good psychiatrist and she’ll be fine.’  When her husband added that Denise also had terrible jaw pain, I thought ‘It’s TMJ.  She just needs to get fitted for a mouthguard.  Been there!  I mean honestly, what’s all the fuss about?’  But then I took a step back and looked at the situation differently:

A few months earlier, my 21 year-old brother with Asperger’s (a form of high-functioning autism) was suffering from a mystery ailment.  Again, I didn’t take it seriously.  I just figured he was being too much of a mama’s boy and needed to grow up.  But then his symptoms kept progressing.  To the point that he could no longer be written off as just ‘some kid who needs to get a grip on reality’.  He would walk down the hallway and pass out flat on his face without warning.  He would vomit so violently that he kept pulling muscles in his chest and back.  He felt dizzy all the time.  Every doctor had written him off, telling him he just had depression; one doctor even eluded to the fact that my brother had Muchausen’s!  Despite all of the incompentent medical “professionals” that my brother had seen and been dismissed by, my mother pressed on and fought to get a doctor to order an MRI of my brother’s brain.  The results of that MRI silenced everyone and moved his doctors to take immediate action.

My brother, Jake, was diagnosed with a Chiari Malformation.  Essentially, his brain was too big for his head, so part of his brain was pushing down into his spinal cord, causing excruciating pain.  The cure?  Immediate brain surgery.  I remember receiving “the” phone call from my mother.  I still wasn’t taking the situation seriously.  She told me that Jake’s MRI showed he had something called a Chiari Malformation, which could possibly mean brain surgery.  ‘Yeah, yeah, yeah.’–I thought.  ‘I’ve got my own problems.  Talk to you later!’  But I was curious.  So I did a quick search of what a Chiari Malformation was and realized that my brother wasn’t going to “possibly” need brain surgery; he was going to “DEFINITELY” need brain surgery.  I started crying.

Despite the fact that Jake lives in Maine, my mother made sure he was scheduled to see a Neurosurgeon in Boston.  And so we anxiously awaited his consultation with the Chief of Neurosurgery at Tufts Medical Center in Boston, Massachusetts; about 20 miles from the house that I share with my husband, son, and sister.  My biggest fear was that the doctor was going to say “Yep, you need surgery.  We have an opening a year from now.”  Jake had stayed at my house for a few nights.  While he was in the shower I heard him vomiting.  VIOLENTLY.  So violently that I blocked my ears, ran into the room farthest from the bathroom, and broke down in tears.  I felt so unbelievably helpless.

My brother and I aren’t very close.  I’m 11 years older than him, so while he was growing up, I was in the process of moving out and getting married.  But seeing him in such pain changed me.  For days before his consultation with the Neurosurgeon, I could barely think straight.  I could hardly function.  I was so afraid that he wouldn’t be taken seriously.  But after he saw the Neurosurgeon, I was ELATED by the news that he was scheduled for brain surgery just three weeks from that point in time.  That meant that Jake wouldn’t have to suffer for months on end.  There was an end in sight!  It didn’t matter that the “end in sight” involved brain surgery; what mattered was that he wouldn’t be in pain anymore!  And so I began preparing for Jake’s surgery the only way I could think to–by knitting him some hats made from the softest yarn I could find.  I knew that Jake was going to be left with a HUGE scar on the back of his head, and I thought he’d like a hat to cover the scar to prevent people from staring at him.

2011.04.25 Knitting Jake's Hat 01

Hat #1–I had never knit a hat before, but what better reason did I have to learn than the fact that my brother was having brain surgery?

2011.05.05 Hat For Jake

Hat #2–I’m glad I knit a second hat because the first one was FAR too warm for him to wear in May!  This hat was made of the same soft yarn, but was much lighter and less insulating!

Jake’s brain surgery was only supposed to last a few hours.  However, it lasted longer than anticipated because the doctor actually had to use a microscope during the surgery, due to the thickness of Jake’s neck!

After Jake’s surgery, he was (obviously) put on pain meds and steroids to reduce swelling and inflammation.  The steroids made him what I can only describe as ‘a politician on cocaine’.  He was soooo friendly to everyone he encountered, hyperactive, talking non-stop.  Very out of character for a kid with Asperger’s!  Want to know exactly how MAJOR Jake’s surgery was?  Here’s his scar:

2011.05.04 Jake 1 Day Post Op

Jake’s scar–1 day post-op

2011.05.06 Going Home After Surgery 02

Jake’s scar–3 days post-op

But Jake didn’t let brain surgery hold him back from taking one of the most important steps he would ever take in life–marrying the girl he loved!

2011.08.06 Jake & Jaimie's Wedding 049

Only 3 months later, he married his girlfriend, Jaimie.  I’ve never seen a happier groom in my entire life!

I can’t remember how I originally heard about this particular TV program, but I ended up seeing a show on The Discovery Health channel called “Mystery Diagnosis”.

This particular episode featured a beautiful young girl who, like my brother, had also been written off by countless doctors for years.  But her mother continued to fight on her behalf and eventually she received a diagnosis.  Well, not just “a” diagnosis; more specifically, THREE MAJOR DIAGNOSES–1) a Chiari Malformation, 2) Ehlers-Danlos Hypermobility, and 3) a Retroflexed Odontoid.  This poor girl had to finish high school on her couch because the school system felt she was too much of a liability to have on the premisis.  And understandably, because–much like my brother–she would pass out without any warning.  Teachers would find her collapsed on the floor of the bathroom.  Having her in school was just too dangerous, so the school provided her with an at-home tutor.  And that’s how she finished high school.  The only time she left the house was when her mom brought her to doctor’s appointments, and in those instances she required the use of a wheelchair to move from the car to the doctor’s office.  Her life wasn’t a “life” at all.

As I watched this program, I cried my eyes out.  I couldn’t stop crying.  Because I knew how much worry and pain my brother’s illness had brought me.  Until that point, I hadn’t stopped to think about what pain my mother or my step-father had endured.  This was my brother, but this was their baby.  My son, Jack, has Down syndrome and autism (amongst other things).  I can’t begin to describe the agony that goes along with each of those diagnoses.  Now I was a mother, and I could imagine the pain my own mother had suffered as she watched her own son deteriorate.  Until his life wasn’t a “life” at all.  And it broke my heart.


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