I was born sixteen weeks and three days premature. I developed hydrocephalus due to a Level 3 out of 4 brain bleed I had while in the NICU a month after my birth. I weighed one pound seven ounces. In the NICU, they used lumbar punctures in my lower back to collect cerebral spinal fluid. My head swelled and my family knew something must be done. My body was tiny, but my head was disproportionally huge for my age. I was throwing up a lot. The doctor, Dr. Ben Carson, inserted a ventriculoperitoneal (VP) shunt when I was big enough to survive the operation. The famed neurosurgeon told my parents “they were absolutely right to do the surgery; the pressure had been even worse than they’d thought. It’s a good thing we operated when we did. Fluid was everywhere. If we’d waited . . .”
I had several shunt revisions in childhood – five neurosurgeries by the time I graduated elementary school – then eight years without revisions. Then, I was admitted to Johns Hopkins Hospital for shunt failure. Every hydrocephalus patient’s symptoms differ, but mine are lethargy, extreme photophobia (e.g. I need to wear sunglasses indoors), vomiting, and a terrible headache. The shunt had worked for eight years but had stopped so I had my sixth brain surgery.
Unfortunately, that night the new shunt failed. “Help me,” I cried. “Help me!” … Another surge of pain. Darkness closed in on my vision. I think I’m dying. I could feel my mind becoming more warped. With pain like that, you can’t think about anything but the pain. I was “completely, totally out of it” that night, as my mom later said. The physical pain temporarily drove me insane. Not only was it excruciating pain, there was nothing they could do. No pain meds they could provide; analgesics can have side effects, like messing with my breathing. Only a brain surgery could alleviate it. I knew I’d have to wait it out but the pain got worse. I knew my mom was there to help me, but I also felt so alone and helpless. Doctors periodically checked on me. He would have me look at him and say, “Who am I? What’s today?” Basic stuff like that to ensure my brain still worked. There was a point where it took me a few seconds of disconnect between seeing Dad and naming him as such; that’s when Dad knew something was wrong.
Then, three hours later, I had a seizure. The doctors were alerted by my father’s screaming. I was back for brain surgery number seven. I stayed in the hospital for three more days. I had a new scar near my shoulder, a longer one on my abdomen, and a bandage on my head. I mostly stayed in bed during this time but made an effort to get up and walk down the hall to the Teen Room (which had a pool table/air hockey table, a bookshelf, and comfortable chairs) during the latter two days. While I was recovering, Olympian athletes Matt McLean and Kaitlin Sanderno came to the hospital. I held a medal from the 2000 Olympics and wore a medal from the 2004 iteration around my neck, which was a cool experience despite what I was going through!
The plan was for me to rest, recover, and return to university in about fourteen days. However, before that could happen, the shunt failed again and soon I was having neurosurgery number eight – my third brain surgery in eleven days! After all of my brain surgeries, I was diagnosed with epilepsy. I’ve had two seizures so far. Medicine helps by reducing the risk of seizures and I wear a wristband that can be scanned to access my medical info.
Having those brain surgeries has given me the strength to look at whatever problems life throws at me and say, “Well, this won’t be easy, but I’ve faced so much worse! I can get through this.” I turn my suffering into strength; I use it as motivation to actively look for the good in every day. Little things like getting a good snack or a well-written book mean a lot. The people who’ve looked out for me, who actively strive to understand what I’ve been through, mean so much to me.
If someone asks me to explain my conditions, I’ll give basics, but relatively few know, and even fewer the whole truth. I hide in plain sight, show a version of reality I want others to see; others expect me to ‘like’ things on Facebook I care about and maybe assume a friend has these conditions. Visual-motor processing issues have resulted in employment struggles, more so than my Asperger’s or hydrocephalus. Everything overlaps; it can be hard to distinguish what causes what. Throughout it all, I focus on my strengths.
Boy Scouts and other parts of my life have taught me to be prepared, to always have a backup plan. I always pack one more anti-seizure pill than I need and extra clothes on vacation. I keep a pair of shorts, a T-shirt, a pair of briefs, and a pair of white socks in the front pocket of the backpack I used at school and vacations. There is constant preparation, even for something like a haircut.
I use my hydrocephalus fears to inspire me to live without regrets. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness. I’ve used HA’s Hydrocephalus Advocacy Toolkit to write letters to my Congressman, Senator, and to the local newspaper editor. King Tut’s father, the controversial Akhenaten, reigned from 1352 to 1336 B.C. and is thought to have had hydrocephalus –we’ve been waiting over three millennia for a cure!
There are all kinds of survivors. I’m a medical survivor. I’m a fighter and a self-described ‘fighter with the soul of a peacemaker.’ The term ‘survivor’ blends these. I’ve been a survivor since my birthdate!
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