Celebrate the milestones, it’ll help you face the next one!

Celebrate the milestones, it’ll help you face the next one!

A year ago today, I had a VP shunt placed. That was just less than a year after my repeat ETV (Endoscopic Third Ventriculostomy). A surgery which sealed my fate with a brain bleed (A post for another day).

Statistically, shunts fail within the first year of placement. That doesn’t mean they can’t or won’t fail after the year is up. My first shunt, a programmable Medtronic Strata valve, placed after my diagnosis, failed within 2 years. I also had a shunt revision and a shunt replacement, which lasted 1 day respectively. My ETV, performed as an emergency following those two shunt failures on day 3, lasted 11 years, 5 months and 2 days.

Fact: Shunts and ETVs CAN and DO fail; At ANY time.

Recognising this day, is not a way for me to remind others of a time they’d much rather forget. NO. It’s more a way of reminding myself of a time I survived. A time I need to remember (for myself) because, it validates what I had to overcome, to get to today.

It’s human nature to celebrate special occasions and, depending on what it is, this usually happens annually. Like birthdays, Christmas (or any other religious holiday), or historical event specific to your geographical location. Some may even honour those who have gone before us and memorialise them on the day of their death. A reminder of a person who meant something to us. Sometimes, we may even continue to remember their birthdays, regardless of the fact that they are no longer with us.

There’s no harm in any of it because it keeps us connected and grounded…

As someone living with Hydrocephalus, I choose to celebrate the milestones. I mean, what else is there when you live with an incurable condition?

It may be a day, week, month, year…decade even (maybe 2), without a headache. OR, even better, when that equates to no more brain surgery, along that same timeline.

What sets us apart?

Whether you’re born with this condition or diagnosed later in life, does not make a difference in the grand scheme of life. There’s a degree of loss, regardless of when you’re diagnosed. I’d even go so far as to say; You understandably long for a life you wish you had:

  • Whether that be when you see others who are undiagnosed, leading a “seemingly normal” life, compared to your own. OR,
  • Mourning the life you had, before diagnosis.

Either way, it takes a toll on you. I personally don’t think one is better than the other, especially not when the diagnosis is the same. In the end, we all have to live with the uncertainty and unknowns that accompanies a condition like Hydrocephalus.

One diagnosis is what we have in common, with different causes and levels of severity. But we have different anatomies, which means; No two failures are the same. Also, our circumstances vary. Some have the extended support they need, and some don’t, which heightens their feeling of loneliness.

Remember: Everyone has their challenges in life. Some people are just good at hiding it…

Today, I’m thankful that, despite still having headaches from time to time, I’ve reached a full year with “Sophy” my programmable Sophysa Polaris shunt valve.

Whatever the milestone is for you, celebrate it, especially if it helps you get from one moment to the next…

2 Comments

  • Duncan

    April 23, 2023 at 3:32 pm Reply

    You are a Warrior for our cause, every story you share are words I wish I could express.
    Thank you Sky

    • Skyewaters

      April 23, 2023 at 6:16 pm Reply

      This condition needs a voice and I need an outlet. A win-win situation. If what I write helps anyone else, that’s a bonus?

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