Genetics, Dr. Google, and Various Stages of Hope

People keep telling me to stop Googling NF2. To stay positive and maintain hope that my sciatic tumor is just a one-off deal that isn’t linked to my dad’s condition. For now I’m choosing to believe that this is another case of people knee-jerk reacting and saying what they think is the socially acceptable response to news like this, because otherwise what they’re implying is incredibly hurtful and ableist as hell.

The implication, of course, when someone says to stay “positive” while I’m actively trying to wrap my head around the genetic likelihood of having NF2, is that NF2 itself is a negative, and the only positive, hopeful outcome would be for me to not have it at all.

First of all, there is absolutely life, and a lot of it, to be had after an NF2 diagnosis, if that’s even what I happen to have. And while I’m scared and sometimes I cry hysterically at the thought of having multiple tumors in brain and in my spine, I happen to know from firsthand experience that NF is not an immediate death sentence. My dad lived with NF2 for nearly two decades. Sure, he was in pain and it sucked a lot of the time, but that man lived. We wouldn’t be so bereft at his passing if he hadn’t.

Second, researching NF2 is filling my days with an almost ridiculous abundance of hope and positivity. I mean, it’s not like I actually want to have Neurofibromatosis of course, but the reality of whether or not I have it was made long before I was even born. I can’t bargain or plead or bully my way out of it. All I can do is move forward with the best information, support, and mindset that I can muster.

And it just so happens that when it comes to information, Dr. Google is far better than any doctor I have seen up to this point. Every single physician I have had since my father’s diagnosis has been enormously dismissive of my fears. I have had to cajole my way into the ultrasound that discovered my Schwannoma. I have been treated like a hypochondriac for complaining of tinnitus, pain, and vertigo – the very symptoms that often uncover this condition.

Doctors have told me that Neurofibromatosis is a rare disorder, as if that was supposed to assuage my very real and very understandable fear of having been passed down my father’s genetic code. Not one single doctor ever said “hey, NF2 is rare for sure, but with a parent affected you have a fifty percent chance of having been passed the code for it so let’s monitor you closely for this here list of symptoms just to be sure.”

Instead of information, I was given empty reassurances that developing NF2 was improbable, that it would have manifested in adolescence, that I, at forty years-old, was fundamentally out of the woods. Also, that painful lump I’ve been complaining about for two years now is just a muscle knot, keep on going to Physical Therapy because it for sure doesn’t feel like a tumor.

But, you know. Here we are.

For better or worse, Dr. Google never dismisses my concerns. Dr. Google doesn’t view my possible NF diagnosis as either positive or negative. Dr. Google just tells me things no one else has been able to say, and somehow that is making these weeks of waiting a little more bearable.

Dr. Google is also a repository of hopeful information, showing me all the ways I can live with Neurofibromatosis rather than lament all the ways my life will be over because of it. Because of the Internet searching some folks are so quick to discourage, I know there is an NF2 specialist five-and-a-half miles from my home. I know the hospital this particular specialist practices at has a gamma knife, in case there are small-to-medium sized tumors in my brain in need of removal. I know that a young man in California just became the first quadriplegic to regain the use of his upper body after experimental stem-cell treatment. I know about motorized wheelchairs and robotic exoskeletons and dozens of other mobility aids that can help me navigate whatever might be coming my way. And best of all, I know that there are groups and organizations and communities out there to keep me from feeling so all alone.

Whether or not I research Neurofibromatosis will not affect whether or not I have the condition. I can’t “catch” NF2 even if I perform a billion and one Google searches on vestibular schwannomas, and I can’t think my way into tumors no matter how much of a headache it is to try and decipher mouthfuls medical terminology. But what I can catch, what I can think my way into, is a sense of informed hope and futuristic possibilities. A preparedness that makes me feel completely ready to meet with the neurologist on Monday and tell him in no uncertain terms that I am here for whatever long haul I have ahead.

So, no, friend. I am not going to stop looking up things on the Internet. And I am not going to shy away from whatever happens next. I don’t need to not have Neurofibromatosis in order to stay positive. I mean, I am for sure holding out the sliver of hope that this tumor is indeed some kind of freakshow one-off. I do not want to find more tumors, or to need any of the incredible scientific advancements that made in the nearly thirty years since my father’s passing. But that doesn’t mean it’ll be the end of the world, or me, if that’s where this is going.

There are many kinds of hope. And I, for one, am going to surround myself with them all.