Living with Chiari and a Second Surgery for My Daughter

I hadn’t planned to devote multiple blog posts to this issue, but here I am. Another late night, my mind racing on this issue. Writing is generally my best cure for this situation. Well, it was determined on Monday this week that Skye, my daughter, will definitely undergo a second Chiari decompression surgery at the end of this month.

Interestingly, she has developed tiny bony growths on her dura, possibly playing a role in why her symptoms returned a few months after her initial surgery. We are not sure why this happened, and we won’t know the details of what is causing the Cerebrospinal fluid (CSF) blockage until she is in the operating room. It could be a thickening or scarring of the graft on her dura from the previous surgery. It’s all speculation at this point.

Interestingly, my wife found this article, “Does The Type Of Dural Graft Material Matter?” at ConquerChiari.org. Check it out. Well worth reading if you have had the surgery or are contemplating it.

As I mentioned in my previous post on Living with Chiari, I went with an autologous graft, meaning my own tissue harvested from my thigh. It hurts for now, but seems to have the highest success rate in this procedure and I’m feeling okay as far as that goes. My daughter’s surgeon prefers to take a different route; he’s the expert, one of the top in the country, so I’ll trust his opinion and that all goes well for Skye.

My one request to all parents reading this: don’t ignore your child’s complaints of headaches or any myriad of symptoms that seem to occur on a regular basis. Sometimes those daily tummy-aches could turn out to be something serious that is fixable before it becomes a major problem. Sometimes it’s nothing more than a minor food intolerance, but it’s best to know whatever the cause. Your child will thank you for it in this future.

Trust me on this, I went through a lifetime of odd issues like poor ability to play sports due to my unwieldy coordination, my strange speech patterns in which I need to pause to force words out mid-sentence, and the many pain symptoms that were generally written off as growing pains and the always fun to hear, “you’re too young to have problems.” Turns out they were congenital issues and very real – early Chiari symptoms as well as a patella-femoral mal-alignment in both legs that developed into arthritis in both knees. Fixing these problems before adulthood would have been life changing on so many levels, but I can’t go back.

I am pushing forward, though. Skye is pushing forward. So should you.

Living with Chiari, Recovering from Chiari Surgery

I should be asleep right now. I tend to get all of my writing ideas at night, as well as all of my creative and business ideas for that matter. I’ve slept so much these past few weeks that there are occasional hours I feel wide awake, like right now after 2:00 AM.

Three weeks ago today I underwent the most serious medical procedure I’ve ever endured: decompressive suboccipital craniectomy and cervical laminectomy, also known as Chiari Decompression. This included a duraplasty, which required harvesting tissue from deep within my thigh to open and expand the dura, the protective tissue the contains both the brain and spinal cord.

My daughter and I are two of the small population born with this congenital disorder, in which the cerebellar tonsils, located at the base of the cerebellum next to the spinal cord, protrude through the opening in the skull forming a hernia in the upper spinal column. Though not life-threatening, it creates a variety of symptoms, including:

  • localized headaches in the back of the head leading to the eyes,
  • severe stabbing headaches brought on by laughter, coughing, or sneezing;
  • lack of coordination and fine motor skills;
  • dizziness and vertigo;
  • inability to speak fluently without pauses and interruptions as words won’t form correctly or at all;
  • chronic neck and shoulder pain;
  • occasional tingling or numbness throughout the arms and hands;
  • and a general sense of malaise.

My daughter went through a Chiari Decompression in July 2013, and is looking at a second surgery in the near future as her Chiari Malformation is off-the-charts in both size and severity. She has a 28mm obstruction, whereas mine is 16mm, which is considered moderate to severe depending on the source; my doctor went with severe. Make no mistake, even the smallest obstruction of a few millimeters can be just as problematic.

I am healing well. My neurosurgeon saw me this week and said I was in far better condition than most patients he sees a few weeks after surgery. Though I’m tired and groggy most of the time, I feel relief from the chronic pain in my neck and shoulders I’ve endured for far too many years to recount. The headaches I dubbed the “Chiari Headaches,” not to be confused with my migraines, are gone! I feel a new sensation of clarity slowly creeping into my brain, masked by medications and sleepiness, I can sense it. And that is a beautiful thing.

I’m sad that my daughter needs to undergo this procedure a second time, but I wish for her all of the relief she can possibly obtain. She was a prolific athlete and misses it more than I could ever understand. She had to quit because the Chiari symptoms took a rapid grip of her head and body. It will bring our family a great joy to see her back on the ice figure skating or on the river rowing crew, or whatever other sport she picks up.

I’ll end with this. If you are living with Chiari, know that it is treatable. There is no cure, but quality of life can be vastly improved. If you suspect you might have it, talk to your doctor or a neurologist. The only way to detect it is by MRI. Be proactive, take control of your health. It took me a long time to reach this point, I’m 40 now, I was diagnosed with Chiari at 39. It’s never too late.
UPDATE: I learned while sharing this on Twitter that September is actually Chiari Awareness Month. I had no idea. Glad I was able to contribute in this small way to building awareness. – DTG.

New published work coming in 2014

It has been quite a while since I wrote a blog entry. Life has been extremely busy with finishing my graduate degree in May, the ongoing needs my daughter’s medical, and a series of changes (all good) occurring at my job since returning from my medical hiatus about four months ago.

Many topics have circulated in my brain to write about for blogs, essays, and short stories, but I decided to spend my down time this month losing myself in the game Grand Theft Auto V for a few weeks, something I haven’t done in several years. That badly needed mental vacation of exaggerated cartoon violence and dark comedy helped me break out of the grad student mentality and refocus on my writing priorities for this summer. I did take obsessive notes on all of those ideas, though, so nothing was lost.

I am excited to share news on a few new publications I’m involved in, coming out during the latter half of 2014.

Don't Look Back coverI wrote the story “The Elusive Pettibone” for the anthology Don’t Look Back, edited by David Lingbloom. The story is my take on the origin of the White Lady of Union Cemetery in Easton, Connecticut. It was fun to write, exploring the historical aspects and reported ghost stories of a locality near home.

I found myself deeply invested in the protagonist I created for the story, Angela Pettibone, an emotional development that I have not experienced with other stories or characters I’ve created. The legends of the White Lady’s wanderings along the roads of Easton between two cemeteries were a shared interest with my late younger brother. Looking back, this is a story I know he would have loved. Therefore, I have dedicate the story in his memory.

Don’t Look Back is due out this fall from Dark Moon Press. I will share purchasing details once available.

Phobophobias cover 01Next up is the much anticipated anthology Phobophobias from Dark Continents Publishing, edited by Dean Drinkel, which contains another story set in Connecticut, “U is for Ufophobia: Streaks of Green.” The current-day story follows a young woman refusing to hide from an otherworldly occurrence that has the state on lockdown. Inspired by an unapologetic mid-20th century noir story, it tackles the issue of living life in spite of the constant state of terror and confusion created by the unknown. Phobophobias is expected to arrive in August.

Lastly, I am editing my first episodic novel, a collection of linked stories following the disturbing and eventful life of a young woman named Lanie, The Dystopian American. The author line up includes a strong mix of emerging talents and accomplished dark fiction writers from the indie scene. Reading through the first drafts of material I feel confident that we have a strong book in the making. It’s a little early to share details now, I will post more about it when appropriate.

More to come as I have details to share.

Creatives using Adderall and other performance enhancers – what’s the deal?

Hey writers and other creatives – are any of you aware of this new trend of taking Adderall to be better at your disciplines? Take a look at this article, In search of perfection, young adults turn to Adderall at work” published December 3, 2013 on Al Jazeera America.

Besides the insane idea of using a drug dependency to maintain a leading edge on the competition, what got me was that the interviewed writer claims her work is better as a result of taking Adderall to stay awake all night writing her article. It seems to help her connect to her work. What is her writing baseline otherwise – mediocre work? How does she truly know the work is even better with the drug than without it? Fooling herself with this mythology is more than likely. What gets me, why does she even have a high pressure job writing for the NY Times?

This story, or this epidemic rather, makes me crazy. When I need to perform at a high level, whether in writing, designing, website creation, or whatever else I do, I just put myself in that mindset and do it. Sure, extra caffeine helps stave off the eventual weariness, but I don’t look to performance enhancers to do better at what I already do best.

For the sake of my argument, maybe a bit self-centered on my part, not to intentionally show off, yet it would seem I am, I have been knocking out some end of semester grueling grad school writing while heavily medicated. I had cervical spinal surgery almost two weeks ago, complete with a  disc replacement and decompression of my alarmingly compressed spinal cord. The condition was maybe a month or two shy of becoming an emergency situation. I was very lucky to have this situation discovered while checking for another unrelated neurological condition condition just a month ago. Ah, the fun of growing older and degenerative conditions like osteoarthritis setting in to my vertebrae. My point is, I am still performing at my top level, albeit at a slower than normal pace as I fight through the overwhelming need to sleep while I heal, the fuzziness of my thought process throughout most of the day, and the horrendous effects it all has on my typing abilities. But I work through it. And I own it, every bit of it. No excuses.

I know, I’m on a soap box here, and stepping off it now. But I wonder, I am in some way different than others not finding a need to depend on Adderall or other performance enhancers to do my job well, even under conditions of my current ailment?

I’d love get all of your takes on this. I know a lot of you who visit this blog are creatives in varying fashions – several of you are my friends, so I’m on to you 😉  – and have probably encountered in some shape or form people using Adderall or whatever else to get through heavy loads of college work or big job related projects. I’m interested in learning more about this apparent epidemic from first-hand accounts. Don’t leave me hanging, that would be cruel.

On that note, happy holidays as I nod off now. 

Article referenced: “In search of perfection, young adults turn to Adderall at work,” Al Jazeera America, December 3, 2013.

On writing aesthetics & process: happiness is not unendingness

I was challenged by my MFA writing mentor with a writing process and personal aesthetics  prompt: when am I happiest with my writing? And when am I unhappiest about it? Well, since I am going to address this on my blog, I need to make it relatable to you the reader. Otherwise, what’s the point of the blog? Talking to myself is not an option. I just assume keep a diary – I mean journal – under my pillow if that was the case. So, let’s start on a negative note.

I am least happy when I’ve written nothing.

I am the most unhappy when I’ve gone through the motions of the writing process and yielded garbage; the times when a part of a story might emerge that I look back and realize it’s been written somewhere sometime before. A text modeled after a cliché. Or a storyline I hate. Or, most despised of all, one with no ending in sight. I equate that to receiving injections of chlorine bleach under my skin. I’ve never had bleach injections, but I have a good imagination rooted in knowing its chemical properties and how it interacts with various materials.

Stories with no end in sight. The (clichéd) bane of my writing existence.  

This is perhaps my biggest challenge. I have written several almost-stories that don’t end. But they’re supposed to end so they can live the lives of mature stories as they were meant to. Perhaps this is why serial novels are so common, those authors must suffer the same affliction. More than likely capitalism is their driver, which is a good thing. Beats holding a day job while writing at night.

These unfortunate stories sit dormant in my “In Progress” folder on my MacBook waiting for their opportunity to shine. When I open the files and read through, I’ll make changes, write new parts, but they just fight closure. Perhaps that’s the point, they aren’t near completion and I’m being absolutely neurotic over a non-issue. Thing is, I’m not neurotic, I’m obsessive, and that throws a whole new complexity into the mix. It’s that obsessiveness that makes me so specific, so tuned-in to detail when I create. Both to my success and my detriment. Happiness and unhappiness.

Then fear rears its ugly face and taunts me.

In thinking about this issue I realized something, I have a fear of commitment in fiction, which is completely unlike me in the real world. I’m not sure where this comes from. There’s an overwhelming sense of foreboding when I consider allowing a character to die or experience some other incapacitating life-altering event, especially as the means to close a story or a major climax. Unless I despise my protagonist and enjoy the sight of a demon exacting the revenge of the protagonist’s victims – see my story “F is for Furcas: Lies Under Skin” in The Demonologia Biblica. Don’t get me wrong, I will do what’s right for the story, it takes me a while to accept the character’s fate to move forward. This fear of ending a story, however, can cripple the story when not careful, and a source of frustration for me.

I have a challenge to accept. And depending on my mood, I might. This is the root of the matter, I think. Amateur psychologists would have a fun time picking my brain about my creative process as I still haven’t figured it out in my nearly forty years of life. It’s a piece of me, creativity defines me. There is no other light to see me in – like a finance guy or a political guy or a construction guy – and that’s not necessarily by my choice. And I have an impossible time seeing myself in those roles in reality, but that completely changes when it comes to writing.

Bringing this full circle.

This little writing journey today, this blog entry you are reading right now, has been a fun one. The self-discovery and sharing hints of my usually secluded self lighten my brooding artist mood. In real life I tend to be private; in writing life, which is another reality for me, I am more open about myself. It’s this ability to be open that probably makes me happiest in my writing. It encourages confidence in my abilities, it inspires new ideas, new creative methods to add to that mysterious creative process that controls me. And sometimes, it gives me the ability to find my way home, to draw conclusions, to progress a plot line, and to end a story. To resolve my unhappiness with a never-ending story. And that is when I find myself thrilled about my writing, that momentary sense of fulfillment until the next story comes along.