Hydrocephalus: Just another detour…

There are moments in your life where you have no control over what happens to you, so many, too many to list. We all have them, we all go through “stuff” that either make us or break us. Situations which require us to go on a journey, into the unknown. Situations which poses challenges, conjuring strength, we never knew we had in us to overcome.

Why am I writing about this?

Well, maybe it’s the time of year, where you reflect on so many things and yet nothing at all. Re-evaluating what’s most important in your life and… life in general. Or, maybe I’m just feeling a bit cynical…who knows.

A few days ago, I took my son to his cricket match. He was driving since he got his learners license a few months back and is now needing to make up some hours of driving time. Despite using the GPS, we ended up taking so many detours (i.e. got lost), not knowing the city too well. I sensed his frustration, (almost) feeling of helplessness and yet, determination to get to his destination, as I sat next to him in the passenger seat, calmly, not stressing half as much as him but fully empathetic towards him. Regardless, in the end, we got to our destination almost half an hour late!

Anyway, it got me thinking about the detours my life has taken with this condition. So many changes and avenues I’ve gone down since being diagnosed. Even that in itself, is something I would never have foreseen in a million years – being diagnosed with an incurable condition.

Some days I really wonder what the hell that means and how heavy it would be as a paper weight…

It’s ironic, when we’re young, people tell you, “the world is your oyster”. What does that mean really, for someone who receives a diagnosis of an incurable condition, later in life? Also, since receiving my diagnosis, surgery and everything else that’s followed over the last 12+ years, I’ve definitely taken even more detours. Quite a few, in fact. I can now sit back and look at my journey and view it through totally different eyes.

Maybe it’s something which comes with age as well, I think that definitely has something to do with it! However, a situation like mine, and so many others, forces you to “grow up” and “evolve“. It forces you to stand on your own two feet and, you learn to either live or die. Fight or succumb…the latter is not an option. Yet…I’m at total peace with it, unlike a few years ago when I just started out.

Hopefully that makes sense...

Chatting to a colleague’s wife the other night, I realised just how at peace I am with dying. (Unintentional morbidity aside). This condition, this diagnosis, may not be what I had planned for my life. The detours along the road may have been some which have caused:

• Frustration with all the challenges and obstacles,
• Disappointment with the people around me – close and otherwise,
• Uncertainty of whether I’ll be having more brain surgery or not,
• Anxiety while trying to figure out if my treatment option is failing when I become symptomatic,
• Feelings of neglect by certain members of my family, friends and even some medical staff,
• Loneliness as you navigate an invisible condition,
• Fear of not knowing which way next or when the other shoe will drop,
• Feeling lost and helpless as you navigate the unknown terrain of Hydrocephalus,
• Determination in not letting this condition get the better of you,
• …

Similar to being lost and taking a few detours, I know that the end destination is always one which is constant. It doesn’t matter how many detours we take. What matters is that we see the journey for what it is. A journey of change, maturity and endurance beyond measure. There’ll be obstacles and challenges, so don’t be disillusioned. Hydrocephalus does not affect all of us the same way as some have it worse than others. I have full empathy for those who suffer daily, who endure more brain surgeries than birthdays and who fight each day, to stay alive. Some even have other conditions to deal with on top of everything else, but they soldier on, making the most of life, as best they know how to.

There’s no other choice…

As for the detours of life, I have no doubt I have a few more to overcome and, that’s OK! If anything, this detour has certainly made me stronger and added an extra layer of “skin“. It’s taught me some valuable lessons and I’ve gained insights I probably wouldn’t have had otherwise. In the end, I’m just another bad ass, fighting a condition where I get to be my own superhero.

Because I can!