Frogs make a lot of sense
Something I read once said "the process of writing things down can sometimes make your heart a little lighter".
If I tried to tell you that this blog wasn't at all theraputic to me and it was all for you guys to keep you knowing you can go on...I don't think you'd believe me. Whilst my primary aim is to help those of you in this situation to see that it is rubbish but we can do it and to try and share my experiences of it, I would be lying if I said that I didn't get a whole lot of therapy from just writing it down.
So thanks :)
Sometimes I'll sit here for hours and write nothing. Knowing I want to be like the great writers and write something profound that you can't bear to stop reading. However... lets be realistic.. I've had tools and fingers in my head and half the time I can't remember my own telephone number let alone what I wrote in the paragraph before so as to keep your interest! So, Im afraid you have to put up with the slightly disjointed ramblings of a FOUR YEAR POST OP, neuroma patient!
FOUR YEARS?! Did I just write that? Yes.. this weekend. My mum will be able to tell you the exact time and probably what I was wearing if you want to ask her, but for me, I just know it was around this time that I signed that bit of paper to say "yes, dig inside my brain and I'll take the risks"!!!
I know I didn't have a choice really and it has been a good thing of course, but maybe they can make a consent form that says "dig inside my head, make sure you leave it better than you found it, no side-effects permitted" !! Now that would just be ace!
Truthfully... I wouldn't swap this journey for the world. Most days!!
It's just been the most incredible ride with the most incredible eye opening experiences of human nature and ability along the way. Yeah there's been a fair few things I probably didn't want to hear or have to go through too, but I'm getting there with understanding its different not wrong!
How you might ask? Well... the things I absolutely can't pretend Morris exists for... (in a list not complete!)
Work, Cycling, Sport of any kind, anything involving water including the shower, turning around, crossing the road, seeing in the dark, parking the car (that's true fellas not an excuse!) going out in a big group, birthday parties, parties!, cinema, friendships, looking after kids, loud spaces, flying, travelling, diet (a bit), crying (only one side of tears!) being upside down, learning, remembering, keeping relationships. etc etc!!
In fact there probably isn't an area it doesn't affect. Is this a bad thing though? No I don't think so. Actually having to define some of those things and put boundaries and limits on them has been useful for showing friends whats going on.
Take walking.. always hilarious, daytime were generally ok if a little wonky. Night, after a drink, in the dark or when I'm tired! take an arm.. theres always someone ready to offer!!
Same as carrying a full tray, there's not a friend amongst them who doesn't know i'll happily pay for the coffee when it's my turn, but don't expect me to bring the drinks over!!
Work....this is a hard one. I hate that I've had to cut down in both my job type and my hours. I also know that I am at the limit of what I can do in the job I do without being unsafe. I won't go upwards for that reason and I won't cut down because then Morris wins and I lose a little of who I made myself before all this. I imagine I will get there and it won't seem so important eventually, but right now I still have to hold on to the things that give me a little identity.
There's nothing wrong with change and changing your environment to suit it!
Check out this frog.. he freezes down over winter!!! Works for him no questions asked.. he doesn't worry if his friend's will mind. It's necessary to keep going!!
(Thanks to arkansas frogs and toads.. and debbie!!)
No you can't see your Morris and you can't even see the scars in some of us, but you know it's there and you know what it does. Help others to see that and that will help them to adjust to you so that you can adjust too... You can't go back to before. Sorry... so you have to do whats required to keep going! Like the frog!
The thing is if that inner voice inside is saying, "you're so stupid you just forget everything" then you stop trying for fear of failing. If it says "no one will want you around like this" then you will stop going out, if it's "you look so stupid when you wobble around" then you stop going places that it happens when others are around. There's always an action to the little voice that we have which is human nature. The trick has to be to try and pre-empt it....
Make a list if you forget stuff... (your mum or your grandpa does it.)
Ride in the cycle lane if roads are too much (everyone else does that anyway)
Only drive in the day if the lighting at night is hard (means you get a drink if you go anywhere?!)
Go out to quiet places with your friends limit the noisy places to really important events you can't miss
Buy a non-slip mat for getting out the bath (if you're anything like me!)
Build quiet times into the kid's afternoons.. (that's got to be good for them too surely!!!!!???)
Use a step to get things you can't reach because reaching just is NOT a solution!!!! ;)
Use a stick if walking is a challenge. It makes things easier and people move out the way!!
Tell people. Because people only understand when they have knowledge.
Your health is not something to be embarrassed of. This tumour. It's something to be proud of yourself for... for crying out loud it WAS brain surgery!!! Isn't that the yardstick everyone uses when they try and play something down!? "Oh it's not like it was brain surgery!" well for some of us it actually was.. and the others.. it was radiation or just living with the fact theres something in there.
The one thing I really struggle with is that last one. Tell people. I can tell anyone I don't have a close relationship with. Those that I let get close I choose my moment. Mostly because I have to be sure they won't run away from me. Similar to partners. They didn't ask for a partner with a tumour, with appointments and limitations, but for many of you that are already in relationships that person doesn't see any difference in you having this and all they want is to help and fix you. Let them in. They need it too.
Those of us still looking for it. Well I'm no expert but all I know is I would never withhold it. Actually with these people I would tell it pretty early on, because I wouldn't want to get hurt and I would hate to feel like I'm pretending or hiding it's realness. There will be someone who it doesn't faze. Have faith! Turn it on it's head... Would it bother you????? What would you feel??? and start believing other people feel that too!! You've just gotta find them!
How I've dealt with it all over the past four years has changed so many times. I feel like it's been such a roller coaster and there's things I would do differently, but I'm glad I do feel like I have a better handle on it finally!! I can see it happening these days, good day bad day and I kinda even know how to talk about it!! (Different to writing!!!) So now I wait for scan results and the result... well I just want it, because when I have it I have knowledge and then I can work with that.
It's good to look back sometimes... but it's also good to look forward and start thinking what can I do now. What can I do AND live with this and not what have I lost.This is where it is for me now...because there's absolutely been time for grieving and I've done my fair share of that trust me! It still happens, each time I realise something else I can't do the "same".
I also need to look forwards... see that I'm still me and now I have to achieve different things. Things I had never thought of before...but I had to learn to live with all the effects of my tumour and only then do I get to start going forward... fight it and you'll only just be exhausted at the end of the day from doing so.
And there you have it!! The end! Well done for getting here!!
Key point from today's muddled ramblings:
Let the others help, make life easier! Remember... what would you do and think if it was your friend.. because guaranteed they think the same!??!!!