You can help me face the unknown. This is how!

You can help me face the unknown. This is how!

When supporting someone with an incurable condition, there’s a level of trust that comes with great responsibility. It requires vigilance, and an awareness, as if you were protecting your own life…Without this, they might as well be fighting their battle in isolation…

While recovering from surgery, I had a few nurses who spoke to me about my condition in hospital. Many of them were simply curious because they didn’t know that much about it. Some had never heard the words “endoscopic third ventriculostomy (ETV)”, didn’t know what it was or the different body parts a shunt can be routed to. (I simply love having these conversations!). I indulged every question and explained as much as I could, from my own (limited) knowledge. I have had to learn a fair bit, since my diagnosis in 2007, through a “baptism by fire!

Knowledge is power and the next hydro patient who crosses their path, will be better off because of it.


My first night in the ward after surgery, back from ICU, there was one nurse who stood out to me. This is what I recall, despite the fact I don’t remember exactly how our conversation started, or what he asked me specifically, at the start. He mentioned that his wife has hydrocephalus and that “she hasn’t really had any issues”. He wanted to know what brought me to the hospital and why I had surgery. I recall him mentioning that his wife expressed to him, should he ever have to make the decision, that she did not want to be resuscitated.

He said that she had a shunt placed at birth and then one revision in her late teens/early twenties. She was unconscious and ended up having an emergency shunt revision; “A time she did not want to remember or ever experience again”. I told him she’s been “lucky”, because so many people endure far more surgeries. He asked how many I’ve had and I told him this was my 7th brain surgery, since being diagnosed in 2007. But, that my 6th surgery was less than a year ago. He said she wants to avoid having more surgery because she’s heard of people who have had numerous operations, and she didn’t want to go through that. (If only we had control over it).

Empathy goes a long way

When I asked him if she’s been symptomatic since then, he seemed a bit unsure and said; “She only gets the odd migraine, now and then”. I smiled and looked at him sympathetically. More so when he expressed how “unfair and selfish” he thought she was, to expect him to follow through with her wishes. “What about what I want? It’s not fair to me…”. I gave him a comforting smile and asked if he knew when she was symptomatic. He said he wouldn’t really know because she never complains about it.

I smiled (knowingly) again…

As someone who walks around, masking my symptoms and putting up a facade…I understood only too well…Those around us don’t always see, or know, the pain we’re physically in.

I shared that; “I wouldn’t be surprised if, when she has the “odd migraine”, that that’s when she’s symptomatic. Sure we get headaches which are very similar to migraines (some would argue not) but, there’s also times when it’s not just a migraine. Doctors have a way of dismissing our symptoms, and diagnostic test results, aren’t always conclusive. Both times I’ve had surgery in the last year, that’s been the case. Thankfully, Dr Tollesson is open minded, and takes everything into account”.

I explained that I (personally) hardly get migraines and, even though our pain is as close to it as anyone could ever understand, it’s sometimes the only way we can relay what we’re feeling. He questioned some more and wanted to know how he could better support her. I sensed he understood the seriousness and even picked up on a feeling of helplessness. I empathized…

Even though I felt it wasn’t my place, as I don’t know his wife and felt (guilty) like I was speaking on her behalf, I told him to keep a close eye on her next time. I felt oddly like I was crossing a line with her or, maybe, I was helping a hydro sister out. Who knows? Hopefully the latter!

My advice to him (or anyone for that matteryoung or old, male or female). Pay close attention (to her) next time:

  • Does (she) have a headache that doesn’t seem to be going away,
  • Is (she) eating,
  • Vomiting when nauseous,
  • Sleeping more than usual…

These are all things he could observe from the outside. Sometimes it doesn’t have to be all of those symptoms at the same time, to cause concern. I explained that there are times when we mask what we are feeling (For various reasons. Lord knows I have!), and just push through. We get so used to being gaslighted, that we somehow find a way to ride the highs and lows, despite feeling deathly ill. I asked if she has follow up appointments with her neurosurgeon, at least annually, to which he replied; “No”.

I also advised he do some research on shunt failure and familiarize himself with the “language” of hydrocephalus. Explaining that my own understanding increased, not only because I’ve been diagnosed with it but, because I’ve been dismissed so many times. I’ve had to learn everything I possibly could about it, in order to survive. More so, to be in a position where I could advocate for myself, at least enough to get the help I need, if and when required. I validated the fact that it would be tricky for him, since he wasn’t the one diagnosed and physically going through any of it, and presented him with this challenge instead:

Do the kind of research about the signs, symptoms and treatment options, as if you have been diagnosed with it yourself.

A step in the right direction

He told me he wished he could do more and felt helpless. I reassured him that what he was doing, the questions he was asking, the interest he was expressing, was far more than most. I explained that; “Even though I love him very much, I’m married to an ostrich (sticks his head in the sand and pretends everything is OK, when it’s not), when it comes to my condition. (Something I wish I could change). I understand that it’s not easy seeing someone you love, go through this, repeatedly. But, if we have to face it, then so do you. It’s the harsh reality of this condition. That’s what our vows mean. Besides, the word incurable means something…

I also told him; “Being the person your wife can rely on will only help her, if and when, she needs it. And, knowing what you’re up against with this condition, understanding that there is NO CURE, is pivotal”. You can’t pretend that it’s anything else other than an incurable AND unpredictable condition. More importantly, our treatment options CAN and DO fail, at any time. He looked relieved in a sense. Then, thanked me for talking to him and said I gave him a few things to think about, apologized for taking up my time and left me to rest.

Sometimes it’s as simple as encouraging the need to seek medical help…If only he knew, that conversation was beneficial to both of us.

The constant unknown takes its toll…

It’s a tough one. On one hand I can understand how he feels but, on the other, I can also fully understand where she’s coming from. He said she didn’t want to be a burden to him and I just nodded.

Boy did I understand that! (My current line of thinking…)

I will always be of the opinion that how we feel about our diagnosis and treatment options, is personal to each of us. Each of us gets to decide what’s best for us because, as a person living with this condition, it’s not always easy. There’s a degree of mentally preparing yourself each time you go through treatment failure or brain surgery. I don’t think any person not diagnosed with this condition would easily be able to handle any of it.

  • To keep going through brain surgery.
  • The constant endless loop of unknowns.
  • The physical pain and torture we endure, when our intracranial pressure goes up.
  • Slipping in and out of depression.
  • And through it all, having to find a way to keep functioning and “bouncing” back into the slipstream of every day life, to keep going.

Also, treatment failure can be traumatic, especially when it sneaks up on you. It’s not always straightforward and we don’t always get the help we need, when we need it. A constant wondering if you should sound the alarm or see where it takes you. Maybe the symptoms will improve, maybe it’s something else…

At a minimum

We do not expect you to solve the problem. On the contrary…Just be there…We need to know that we can:

  • vent,
  • be weak when we are strong, and
  • count on you to seek help, not minimize what we are feeling, even if it’s just the encouragement to do so (repeatedly).
  • Also, when doctors gaslight us, be our ally. Be the one who pushes back and insists on getting to the bottom of why we’re feeling symptomatic. Don’t accept their word for it and make us feel worse for seeking help – We wouldn’t do that if we didn’t feel like it was the only option we had left!

I can appreciate that we are the ones physically feeling the effects but, you need to be the one who recognizes the seriousness of the situation, and finds it within yourself to be as vigilant, as I HAVE to be…

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