Sometimes all you need is 1 person
Having Hydrocephalus has certainly taught me some valuable life lessons. Some…more obvious than others.
The last few weeks have felt like an unnervingly familiar road which I walked a few years back. History repeating itself, with doctors who outright refuse to help me BUT there’s 1 (FINALLY! — it only took 5 years) who will go where others (seemingly) “fear” to. I haven’t met this man face to face, nor have I spoken to him aside from an email to which he responded within the same day.
This condition is not easy by any stretch of the imagination. One of the hardest things you have to do, amongst others, is probably to make the call about when to seek medical help. It’s not always obvious that your Shunt or ETV is malfunctioning/failing. There isn’t always a norm simply because it’s unpredictable and failures CAN and DO happen outside the norm. (Something some doctors fail to recognise). It’s a time where you can be made to look like a lunatic, be labelled “depressed” and quite simply brushed aside because no one around you is prepared to listen. It’s a slippery slope where you quite easily could start doubting yourself to the point of no return (a place you need to pick yourself up from and forcefully carry on).
This is probably one of the reasons why I said you’ll have to work harder, Lord knows I’ve had to over the last few years.
But…All it takes is 1 person:
- 1 person who asks how you’re feeling and checks in on you while the rest of the world seems oblivious.
- 1 person who will listen.
- 1 person who will be willing to give your symptoms the benefit of the doubt and take you seriously.
- 1 person who will act in your best interest.
- 1 person who will be prepared to do what others, in the same profession as them, would not.
- 1 person who will give you a bit of hope in a hopeless situation.
- 1 person who shows a bit of empathy and enough care to make you feel like a human, someone who matters.
- 1 person who, with a few simple words, throws you a lifeline (unbeknownst to them).
This man probably has no idea just how grateful I am to him at this very early stage of our journey. It may be that all he does is the ICP Monitoring and that spells the end of the road for us, it really doesn’t matter. He’s taking what I’ve been complaining about, what’s been troubling me for so long, seriously enough and, he’s doing something about it…which is leagues apart from anyone else.
Some people have suggested that these situations arise because the surgeon involved is seeing $ signs and, may be planning their next holiday. This is a possibility, I can’t deny that BUT when you reach the stage which I have, it really doesn’t matter. I’m prepared to give it the benefit of the doubt and believe that the intentions are admirable, accepting help regardless of the driving force behind it.
I cannot imagine any person willingly asking for brain surgery. I for one, have been pushed to a point where I feel like I have no other choice. It’s “simple” Don’t have surgery and chance something actually being wrong which ultimately means brain damage or death.
OR
Agree to surgery, and get some form of peace of mind. (Knowing fully that it means another surgery to redo my ETV).
Can you really blame me, (or anyone at this point in their Hydro journey) for taking the risk, especially when he puts it like this?:
*Hemisensory symptoms: I’ve been having a numbing feeling, from time to time, down the right side of my body, from head to toe. Whether it’s related or not, who knows. It has me concerned but…one thing at a time.
How easy or hard has it been for you to find that 1 person who will listen and, act on it?
