I joined a hydrocephalus support group on Facebook a few months ago. Even the entry into the group was wild. The admin was like “Tell us about your connection to hydrocephalus.” And they give me a textbox the size of a tadpole to respond. My gaze slowly shifted to my bookshelf and the three-ring binder labeled “Mark’s Medical History” that is currently one post-it note documenting a paper cut away from completely unraveling.
I don’t have to tell anyone this, but the spiritual gift of summation slipped through my fingertips long ago. So, I just kind of blacked out and bashed buttons (an occurrence that writers call The Flow, but people with annual appointments with a neurologist refer to as “worth mentioning at your next visit.”) I just hoped that some of the basic buzzwords like “enlarged ventricles” “cerebral spinal fluid buildup” and “moderate to severe hemorrhaging” made their way into my application. I waited a day or two in order to find out if I “got in.” This felt like the most sadistic state school entrance essay of all time.
Anyway, I was accepted and on a sentimental note it has been cool to be able to communicate with people who I have a shared experience with. People will post about life milestones and share the anniversary date of their shunt (tube in the head) placement. I don’t know if I’m supposed to be getting people something for these anniversaries, I don’t know if I should be receiving something on mine, but no one in the group seems upset with me so I think I am okay.
Just like other mechanical devices, shunts break from time to time and need to be replaced via surgery (revisions). I have met people who have had one shunt their entire life (I question/am jealous of the validity of their diagnosis.) And I have communicated with people who have had 50+ revisions, after someone’s 50th revision patients receive an a “Golden Brain” award, or if they don’t, they definitely should. While I do not wish to disclose my current number, the digit serves to reinforce my long held belief that I am almost excessively average
An interesting layer of artificial animosity exists amongst the group members based on whether the shunt is implanted on the left or right side of their head. The number seems to be split right down the middle and I don’t see what has thus far been a back and forth of clever comments vamping up into full fledged violence. This move would be unwise for everyone involved given that the militants on both sides of the battle all have medical devices implanted in their head. The conflict would start out with battle lines being drawn and then dissolve into what I imagine would resemble an underfunded boxing camp where people registered and then the organizers realized that they didn’t have the means to obtain coaches, punching bags or gloves, so everyone was told to work on head movement the whole time. Aside from a general aversion to violence, a hashing out of our differences with handheld weapons among hydro warriors with shunts on the left and right concerns me because my shunt was originally on the right side, but after multiple revisions and lots of built up scar tissue, my shunt was moved to the left side. So, I run the risk of not being accepted by either side. However, I have tried to quell this fear by reminding myself that human beings on the left and right have always gotten along and we have routinely been able to see passed our differences as we all strive to help our fellow human and improve life for one another.
Another divisive nature of this disease is that there are different kinds of shunts. VPL which is considered the cheapest one. VA which people believed worked at one point, but those who have it now are experiencing major downgrades in how it serves them today. LP seem to make people inexplicably good poets and VP shunts, these make people incredibly insecure and they believe that someone is better than them and they could be called upon to do something that they could catastrophically fail at at any moment. I have a VP shunt. Now, VP stands for something fun, exciting and easy to remember that you can look up and learn on your own time. VP is more commonly associated with the homie to the homeowner of the White House. Much in the same way people name their car, I name my shunt after the vice president of the time when I have the revision done. My last revision was in 2010, so I named my shunt Joey.
Another role that names play amongst the group is that people in the group refer to themselves or their loved one dealing with the affliction as “Hydro Warriors” and listen, I have no problem with empowering terminology used amongst a group of people to say I am not the sum of my doctors notes, but I wish I had been consulted. Firstly, Hydro Warriors sounds like the plumbing company you call when your first choice is booked out, your second choice is on vacation and your third choice is out because he is getting a colonoscopy. Secondly, Aguaman and Water Woman are literally right there! However, the name seems to have gained acceptance and widespread use within the group, so this idea is destined to roll around this big ole head of mine until I inevitably forget about it.
Some individual posts of note include someone asking if it is okay for people with hydrocephalus to drink coffee. I will admit, this was not something I looked into when I started drinking coffee ten years ago. Judging by the comments I am not alone in this and my fellow shunt-having siblings and I are on the verge of drinking South America dry. Can our stories be a little nonlinear and nonsensical? Sure, but I any neurologist worth their Oxcarbazepine would attribute that to a shunt issue.
Another inquiry that keeps me up at night was a young man asking if anyone else has issues with…well, I won’t use the exact word, but it describes a situation where someone thinks that they are just going to pass gas and it ends up having a little garnish on it. While I understand that pooping is a universal human experience and I admire the crap ton of courage it takes to make that inquiry, I can honestly say that I could have gone my whole life without reading that and I think I would turn out fine. That was posted several years ago and I still think about it. While I would never claim to be able to keep information stored away indefinitely, at this point I fear that this post will swirl around my cereal strainer until my cardiovascular system craps out for good.
Anniversaries of shunt placements are not the only thing that tells me anesthesia-laced love is in the air. Someone posted “Hey, long shot, but is anyone on the Palmer Archipelago looking for that special someone? (location may have been changed to protect identity and for comedic effect.) I kind of respect it from a “shoot your shot” perspective. However, the comment also made me realize something about myself. Don’t get me wrong, I am looking for someone I have things in common with, but I mean like music, food and movies. I am not sure if this makes me a bad person, but with regards to the medical history of the future Mrs. Woonton I am kind of specifically looking for someone who doesn’t have a shunt. I am not opposed to upholding my end of the “in sickness and in health” vow, but two broken shunts can’t get us to the hospital. Am I a horrible human or a good planner? And I know everyone is already aware of this, but of course this comment came from a guy. Only a male could walk into a virtual room of parents dealing with uncertainty and patients processing pain and be like “What, there are women here?!?! Hello ladies”
Without a doubt, the most memorable post I have seen is someone point blank asking “What is the average lifespan of someone with hydrocephalus?” This permanently reset my dial for what I consider a good daily “doom scroll.” Prior to this I had seen teams I was pulling for experience defeat and political decisions that weren’t to my liking. I have now seen someone whose medical history mirrors my own casually be like “Hey, when can we all expect to die?” And that….that’s just a real downer.
So, where to turn in a time like this? I looked up celebrities with hydrocephalus and all I found was a member of the Partridge Family. Which makes a lot of sense with their hit song being the famous words from the neurosurgeon “I Think I’ll Shunt You.” Between this and the only “celebrity” I share a birthday with being Benito Mussolini, I felt absolutely dejected. Given the underwhelming celebrity idols, the fact that the only images a search for hydrocephalus returns are babies with big heads (whether or not you choose to verify this is between you, your internet history and the higher power you subscribe to) and the old heads in my life whose comedy careers peaked in the 60s who liked to quip that I have the “perfect face for radio” I was determined to take my writing talent and become the face (or head) of hydrocephalus. And then it happened…..
Freakin’ Billy Joel cancelled some shows due to pressure in his head and he was later found to have hydrocephalus. Everyone in the group was posting about it and I once again was faced with a self revelation. I was born with hydrocephalus and I don’t know life any different and through the group I learned people can develop the condition later in life. I have come to terms with the fact that I “look down” on them the same way a “Lifer” in prison looks down on other inmates. I was the only failed surgery in over one hundred operations by a neurosurgeon to create a pathway through the third ventricle in the brain and eliminate a need for the shunt. That sucks but I like to imagine he has a dart board with my face on it and there is something sadistically satisfying about knowing I put a stop to someone’s win streak.
Lastly, I played two piano recitals a year for six years. Not to the scale or skill of that of Billy Joel, but I have a particular set of skills and a stepsister who practices law and I WILL seek financial compensation.
