Friday, 15 May 2015

ME AWARENESS WEEK: JARED A CARNIE GUEST POST PART 3/3



Things We Have To Consider
Part 3/3
Read Part 1 here Read Part 2 here



7) The Watching Dilemma

Faye watches Pretty Little Liars. She likes Don't Tell The Bride and Celebrity Big Brother. She doesn't claim they are any good – she just says she enjoys watching them. She says they are perfect for when her brain is not functioning. Of course, I remember her watching those shows before she was ill too, but I try not to bring that up.

Besides, I'm in no position to judge. First of all, she watches those things when I'm out so it's not like I'm affected in any way. And secondly, I watch football. It's not like I can claim any moral or intellectual superiority for spending my time watching a group of wealthy preening idiots running around after a ball rather than watching a group of wealthy preening idiots running around after an elusive murderer called A.

Those differences aside, Faye and I do love watching things together. Would we love Parks and Recreation had we watched it individually? Probably. It's great. Would it seem as significant a part of our lives had we not watched it together? Probably not.

There are certain things we know we will want to watch together. We worked through the West Wing. The Office (both). 30 Rock. The Newsroom. Six Feet Under. The Wire. Deadwood. We're waiting for the last episode of Mad Men.

In the case of more serious shows, these tend to feel like they are only worth watching if you can give them your full attention. We know they will requite an initial bit of input to get on board, to learn the characters, what's happening etc. However, this can be pretty tiring. It can put pressure on Faye to really focus – and nothing saps energy like worrying you're running out of energy.

Recently, after hearing plenty about The Jinx, we decided we wanted to watch it. Twice we sat down with it on and both times the barrage of information was too much for Faye to take on board. We decided to put it off for another time. Now we have to decide whether it's worth it. Television is meant to be enjoyable, not exhausting. It's no great tragedy to not be able to watch something. We know that. It's just unusual to factor in the fact that the effort it takes to watch certain things might be too much now.

In the first year of our relationship, pre M.E, Faye and I went to see Midnight in Paris in a cool independent cinema. I was a big fan of Woody Allen (the director, not the rest) and was convinced Faye would enjoy the film. She was excited to see something she knew I was interested in. She wanted to understand why I liked it.
Now, even putting aside all the difficulties of actually getting to a cinema, the overwhelming noise/lights etc, the simple small pressure of feeling the need to concentrate for ninety minutes might make a similar experience too daunting a prospect now.


8) The Conversation Dilemma


I like talking to Faye. Obviously. That is why I live with her. Talking to Faye is one of my favourite things in the world. Sometimes I don't even know my own opinions on things until I talk to her and she challenges me to actually form my thoughts into something that makes sense. When I get in, ideally, the first thing I'd do is talk to Faye. I like hearing about her day. I want to know how she has felt. I want to know if she managed to do anything towards starting her own business.

The thing is, if Faye has had a successful day, if she spent the afternoon at the computer and managed to do a little typing, the last thing she then needs is to have to focus on conversation for a while. If Faye hasn't had a good day, she doesn't want to have to re-live it. She especially doesn't need to hear me talk about work or anything else when she's struggling to manage to even put two words together. But then, we do live together, we are incredibly close, how do we decide what is and isn't worth talking about? If Faye had a really rough day and can't tell me about it, how can I help to try and make sure it doesn't happen again? If something happened to me at work and I don't tell Faye about it when I get in, days might pass before it comes up again, in which case Faye feels out of the loop. It's tricky.

Faye and I like to tell each other everything. It's fun, funny and kind of reassuring when you can be totally and embarrassingly honest and have someone else just take it in their stride. In general, it's what works for us. The thing is, now, we have to pick our moments. Sometimes intense conversation is the last thing Faye needs. She won't be able to express herself properly and it'll be frustrating for her. Or she'll spend so much energy talking that by later in the evening she won't be able to focus on doing something else. What do we prioritise? The talking or the doing?

It's important not to dismiss silly conversation as wasted effort too. Relationships aren't just built on the big things. You don't live with someone just because you want them there when something terrible happens. You live with someone because you want them there when nothing much is happening too. Faye is who I want around if I have to go to a funeral. Faye is who I want around if I want to sit in the living room in my boxers and eat breakfast. It's important to make sure we share the important things, but it's also important to remember to not only limit ourselves to the conversations we feel we have to have in an effort to preserve energy, as it's the silly stuff that keeps us just as close as anything else.


9) The Plan Dilemma


Life is what happens while you are busy making other plans. John Lennon said that, amongst a range of other things including “Imagine there's no heaven” and “I am the walrus.” So you do have to pick and choose with that guy.

Because this is the thing, sometimes planning is important. Led Zeppelin have played live once in the last twenty years. If you wanted to see Led Zeppelin, it was probably best you tried to get a ticket for that one gig, planned your travel, made a note of the exact date etc. Just sitting around assuming that one day somehow you'd accidentally stumble into a Led Zeppelin gig doesn't seem like the best tactic.

And no matter how poorly you are, sometimes you will become aware of things you want to do at certain times. Whether it's going to a gig or simply having a Christmas present ready, these things are time sensitive. The specific timing of them is what gives them their significance. And sometimes that's great. If Faye is having a really awful spell, if she's stuck in bed unable to move for days on end, it's always nice to be able to point at the calendar and say “look! It's only one week until your mum comes to visit!” Having things planned is great. It gives you things to look forward to, it helps you know during the low times that there are good things on the horizon.

But that can bring stress too. For example, this Sunday, May 17th, we have planned to have a couple of friends over for a cup of tea for Blue Sunday as part of M.E Awareness Week. Now, these are incredibly supportive and understanding friends, there is no pressure to perform for them or for Faye to pretend she is feeling any better than she is, but still, the presence of a set appointment, a set time and date, puts the idea out there that ideally you should try and be feeling as capable as possible at that time. And of course, worrying about that is what saps the energy most.

Sometimes it's a fine line to tread. I like trying to arrange things for Faye and I to do – at home or outside if possible. I like having things coming up to give our lives a feeling of momentum. However I never want to put pressure on Faye. I never want her to worry about not being up to managing something. I always want her to know that nothing is really set in stone, things can always be changed, and that's not disappointing.

The way Faye and I look at it, there are an infinite number of possibilities, an infinite number of numbers. And yes, M.E might have ruled out all the even numbers, but that still leaves us with an infinite number of odd numbers to play with. And some times, M.E might have ruled out all the even numbers and all the multiples of five and even all the numbers ending in seven and nine. But that's ok too. There's still an infinite number of numbers ending in one or three. We just have to be imaginative to capture them. There's always choices, and having to opt out of something just puts you in a new situation with new choices to be made.



More Jared: www.jaredacarnie.com
Pre-order Jared's novel Waves on Amazon

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