Straight From The Notebook
Hello and welcome!
Thank you so much for taking a few minutes out of your day – I hope it is treating you well!
Previously on ‘Blogs’…
I’m deaf, that’s the long and short of it, and I’m now ready to embrace that and accept that it is definitely part of my identity. I also touched briefly on the tricky subject of labels, other people’s perceptions and how both of those things can so easily have an effect positively or negatively on your own identity. I’m going to carry on with that theme a little bit more this week but based on a completely different subject…
It seems that everyone goes through a time in their life when they feel like they need to change. For some it might be a mid-life crisis, for others it’s when they go to university, graduate from university, retire… Whenever it happens, it happens. For me, I’ve adapted, re-styled and re-imagined myself more times than I can remember. And I’m only thirty *ahem*! I think to really change yourself, truly change from the inside, there needs to be a bang. A big reason to change. What better reason than simply not remembering who you are. That’s what happened to me. I simply forgot who I was supposed to be.
March 2019, it’s a Monday, I’ve been teaching back-to-back lessons in my music room since 10am, it’s now early evening and I’m teaching my last lesson of the day. Something hasn’t been right all day though, I’ve been repeating questions, forgetting where we’re up to in the lesson, and is it just me or are the keys on my piano going off in a funny angle? It’s OK though, Ad’s here, he’ll sort it out.
And that’s my last real memory of what happened. The following are excerpts from a notebook I used during the illness.
I’m not really sure why everyone looks so sad… Mum and Dad are here, Ad isn’t here but that’s OK because Dad is putting his hand on my forehead and it’s lovely and cool. That feels better. I’ll close my eyes again and see what’s happening later…
We must be on holiday because the view from this window is beautiful. I like the room. Mum keeps telling me it’s my house, I think she’s a bit confused, this definitely isn’t my house…
I think I’ve worked this out… I can gauge how well I’m doing by how they look at me, especially Ad, his eyes are so easy to read, I should probably let him know that… It must be something serious or at the very least interesting, they keep scuttling off to the kitchen to have a conversation. I HATE not being part of the conversation. What if I miss some good gossip?!
A tiny shaft of light is streaming through the gap in the curtains. Dust is beautiful isn’t it. Not when it settles on a surface and you have to clean it, but when it floats majestically in the air like an elegant ballerina. I can never really understand how that amount of dust is travelling right now this second through my nasal hair, into my respiratory system, via my throat. That’s just odd isn’t it. Don’t you think that it… Uh oh… blonde hair, blue eyes, slightly wonky teeth which don’t do anything to dispel how wonderful he is… That’s Adam. I know it’s Adam. Have I always known that’s Adam?
What day is it today Ray?*
Do you know what day it is today?
OK, well let’s have a think, can you remember what we did yesterday?
Did we go to your Mum and Dad’s for tea?
Yes, we had chicken.
We did, good remembering Ray.
So what day was it yesterday was it Saturday or Sunday?
Yeah, so what day is it today?
Good, do you know where I’m going today?
I am, you’re going to go back to sleep for a bit then your Mum will be here, I’ll see you after work. You’re doing really well Ray.
The dreaded Quiz. It happens every morning and then at some point later in the day. I think I’ve sussed out how to work out the answers… it’s in his eyebrows, he raises his eyebrow when he’s saying the right answer. Boom. I’m a genius.
Now that’s a familiar voice. That voice makes me feel safe and secure.
Hello pussy chat, where’s Amy?
That’s my Mum. She always talks to the cat. My Mum is tiny. Tiny, but fierce when she needs to be. I tower over her, I’m nearly 6 foot tall, but right now I wish I wasn’t; I wish she could pick me up and carry me around like she did when I was a baby. I don’t think I’d feel this anxious if she were able to do that.
I’m sure it’s safe for me to open my eyes. It’s probably still raining but if it isn’t then we can do some pottering in the garden. It’s worth opening my eyes just to check for sunshine…
Good morning sleepy head, how are you?
It’s definitely still raining - Mum has opened the curtains. I can’t hear the rain on the window, that’s one of the lovely little things in life I can’t hear anymore.
You get yourself up and I’ll put the kettle on, do you want tea or coffee?
I don’t know… what are you having?
Oo I don’t know, I think I’ll have tea.
I’ll have tea please.
Don’t you usually have coffee in the morning?
I don’t know.
Would you like a cup of coffee?
I’ve been doing well this last couple of days, I know I have because they keep telling me I’m doing well and smiling at me. Smiling means I’m doing good. Crying means I’m not very well at all and it’s probably best if I go to sleep so they’ll stop worrying about me. I’ve learned a lot from their faces. I can gauge how well I am by whether they’re smiling, frowning or crying. There has been a lot of crying the last couple of days I’ve noticed. I’m not so sure about before that though; I can’t really remember last week, or the week before that. I say can’t really, what I actually mean is absolutely point blank nothing. Saying ‘really’ just softens the blow a bit doesn’t it.
Certain species of Bear hibernate through winter. Come the spring they venture out of their dens, sometimes with their cubs if they have some, and begin exploring for food. David Attenborough describes their first few steps out into the world as “tentative”. Bears have an excellent sense of smell, I suppose like most animals do, and they can explore their surroundings whilst sniffing for danger. I’m not sure I know how to sniff for danger. Maybe I don’t need to anymore.
The following weeks, or month or two are very hazy for me. It all feels like yesterday, it feels very much a part of me, but at the same time it feels like it happened to someone else and the details of what happened are very fuzzy.
The brain injury and the following months changed things drastically for me, my husband and my parents. I was no longer the successful BBC presenter with a booming business who could be relied upon to sort things, who could be leaned on for support. I was, to all intents and purposes, a child again, who needed constant support, care and encouragement. My Mum and Dad couldn’t go away anywhere during term-time as I needed someone at home with me, so if Ad was teaching, I was with my parents.
I lost the ability to speak - I still don’t have my speech back properly and there are still lots of things that I can’t say, but we laugh about it, because you have to. I lost the ability to drive – I can now drive myself a few miles if I’m by myself, but any further than that and I’m dependant on someone else driving. I’ve started doing a little bit of cooking for myself, some days though I find myself eating a raw jacket potato and wondering at what point I lost the ability to successfully use a microwave! Some mornings I have no idea how to make a cup of tea and if you know me personally you know how sacred a good cup of tea is! I lost quite a bit of memory and I now struggle with short-term memory.
Most of all though, I lost who I was; I lost my independence, my leadership abilities, I lost control over myself and my life, I even lost my ability to play my piano, to sing or to play fiddle.
I lost my identity.
Now all of this sounds dreadful doesn’t it, it sounds like we’re heading towards a dismal conclusion. Alas! We are not!
There are an awful lot of ‘used to bes’; I used to be a dancer, I used to have a voice, I used to be super successful, I used to be perfect in every way until I burned myself out and realised that perfection was a load of mushy peas. I used to be…
Losing my identity has been upsetting and difficult in many ways, but it has also been incredibly liberating and quite exciting. Learning who I am, learning what I am good at rather than looking at the abilities I’ve lost, has been an opportunity to re-invent ‘me’. One of my closest friends actually said she loves me even more post-illness, as I am more approachable, funnier and softer round the edges! Apparently, I’m more easy-going, I’m lighter, and one of the things my family are enjoying is how I just say things how they are. Losing my filter has actually been one of the funniest and liberating things that has come out of all this.
Some days are great, some days are bearable, and some days are so ridiculously hard. But that’s OK! I’m making improvements all the time, I’m getting back my ability to play piano & sing like I did before, I’ve got quite good at baking (just not potatoes!) but the thing that I’m most pleased about is that I am now able to be there to support those around me.
Not all changes have been positive though; for some people, their perception of me has changed, it’s like the new label wasn’t adding up with what they thought I should be. ‘Ill’ or ‘in recovery’ wasn’t a label they were comfortable with so avoided the whole thing. Even friends and family who might want to be there through the best and the very hardest of times, just can’t do it when it comes to the crunch. It isn’t that they don’t want to, it’s just that they can’t deal with the emotional consequences of seeing someone they love change completely in front of them.
Society today seems to put far too much weight on labels, in my opinion. Even if you don’t identify as this or that, there is still a label for you. I’ve struggled to work out where I fit in with all the labels. How do I go about labelling my new identity? Do I need a label? Will I be left on the shelf if I don’t have one?
I’m Amy-Rose, I’m a wife, I’m a daughter, I’m a little sister, I’m an auntie, I’m lucky, I’m blessed. I’m happy.
Ad is my wonderful husband Adam
Ray is Adam's nickname for me
It was our house, my Mum was right as usual!