I often think back on what I’ve been through and how far I’ve come since I was first diagnosed a few years ago. What life was like before, escapes me a bit though, simply because there are parts I just don’t remember.
I do, however, remember how it felt seeing the word Hydrocephalus as my diagnosis and, not knowing what to make of any of it. I’ll say this much, the last few years have been a blessing, not because I have this condition but because of the people I’ve met along the way. They aren’t just any people either because the Hydro community is bigger than most are aware of. There are a select few individuals who have given me support, understanding, love, empathy and most of all calmed my fears and anxiety when I needed it most. They’ve listened and given guidance based on experience and for that I’ll always be grateful. They are my go-to people when I feel unsure and a sounding board at most times.
I’ve said it before, this condition can cause you to feel so alone but you don’t have to be. There are two very special people I’ve met on this journey who, even though not physically (because we are literally oceans apart), have “fought” with doctors alongside me and lifted me up when my spirit felt depleted. We have shared laughter and joked about things no other person in my life would be able to partake in. Spouses, children, parents or siblings don’t always understand, no matter how hard we try to explain things to them. This in itself can put unnecessary stress and strain on your relationship, it’s like fighting a losing battle…I’ve made peace with this for my own sanity.
My suggestion is, instead of fighting against it and with them, connect with someone who actually understands exactly what you’re going through.
When I’ve felt like no one cares and had nobody to talk to about my feelings or share my fears, they were there. Waking up in the middle of the night, unable to sleep (be it due to anxiety caused by a concern over whether my symptoms are ETV failure-related or not, an overactive brain, etc.), has me chatting away to someone on the other side of the world (thanks to the time zone difference).
So yes, I don’t just have one but a few Hydro buddies.
Then, there’s the mother of a Hydro warrior who has been giving me recommendations to finding a new Neurosurgeon, understanding fully the qualities this doctor should have. (My family and I have just moved to Australia and I’m having to start the search all over again). It’s not that I need one right now but more the fact that I have one I know I can call on if and when the need arises – because taking this condition for granted, is not what I do. She’s also expressed genuine care and concern for me, something you don’t normally get from strangers. But, that’s the beauty of it all, despite never having met any of these women face to face, they are no longer strangers to me but so much more…
For those of you who have had to start afresh with a new Neurosurgeon, you’d know this is not an easy thing to do. The building up of trust in someone new, getting to know them, establishing a good relationship because you need to be a team and work together, feeling comfortable with the care you receive, etc.
I think of it like starting a new relationship with someone at the age of 41, minus the physical attraction of course. Not an easy task when you’ve been through a rough patch with the previous people. They’ve done a bit of damage to my psyche these doctors but, I’m prepared to keep on looking for someone who will tick my Hydro care boxes…something I figured out along the way having dealt with some unsavoury medical professionals.
The point I’m trying to make is, even when you feel that no one cares and you are all alone, find a Hydro buddy with whom you can connect. The support groups on Facebook are full of people with this same condition, some are nicer than others and that’s just life, so choose wisely. But, I’m willing to bet that there’d be someone you could connect with who will provide just that little extra support you need. As I’ve experienced, it doesn’t just have to be someone with the same condition as you or who has had the same treatment as you or who actually has Hydro themselves. It may be a mother who loves her son so fiercely that she’s made it her mission to know as much about this condition as if she had it herself. Or, a friend or two who have actually experienced ETV and shunt failure more than once and can give you enough peace of mind when you’re unsure about whether that’s happening to you or not.
I’ve been able to face the last few years because of people like this. Whether they realise it or not, I wouldn’t know. So, I’m saying thank you. Thank You Kaitlyn, Haylea and Kelleen from my heart to yours. All I can hope for in return, is that I can be a Hydro buddy to the next person and pay it forward.
Tomorrow a new year starts and I know, without a doubt, that I’m not alone in the boat. Bring on the new year because, whatever lies ahead on this journey, I know I’ll be alright.
If you don’t have a Hydro buddy, it might be something to think about. If you do, have you told them what they mean to you?