Passion

‘Christ on a Friday!’ The Story of Edgar Sawtelle

 pas·sion  (pshn)

n.

1. A powerful emotion, such as love, joy, hatred, or anger.

2.

a. Ardent love.

b. Strong sexual desire; lust.

c. The object of such love or desire.

3.

a. Boundless enthusiasm: His skills as a player don't quite match his passion for the game.

b. The object of such enthusiasm: Soccer is her passion.

4. An abandoned display of emotion, especially of anger: He's been known to fly into a passion without warning.

5. Passion

a. The sufferings of Jesus in the period following the Last Supper and including the Crucifixion, as related in the New Testament.

b. A narrative, musical setting, or pictorial representation of Jesus's sufferings.

6. Archaic Martyrdom.

7. Archaic Passivity.

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[Middle English, from Old French, from Medieval Latin passi, passin-, sufferings of Jesus or a martyr, from Late Latin, physical suffering, martyrdom, sinful desire, from Latin, an undergoing, from passus, past participle of pat, to suffer; see p(i)- in Indo-European roots.]

The Free Dictionary http://www.thefreedictionary.com/passion

I’ve just been watching The Preston Passion on the BBC.  I must say, it did actually succeed in making me cry, linking the Christian story of Easter with modern stories of people making sacrifices to help each other.

When I’ve been at my illest (is that a word?!), I know what people do for me is way beyond ‘normal’ and the support, love and generosity of other people has been amazing. Often I feel rotten and my frustration manifests as annoyance and anger but yet they still keep on helping! (it’s interesting that the word Passion comes from the Latin ‘to suffer’ so I wonder if being unwell increases your passions generally?!).

You don’t have to be a Christian to know about living the ethos of Jesus, i.e. self-sacrifice. When people do, that’s what makes the ‘world go round’ as they say. I see it from people around me everday: my mum, sister, boyfriend, good friends, occassional friends, strangers.. Big kindnesses and little kindnesses all count.

The character in The Story of Edgar Sawtelle is simply exclaiming at something remarkable he has seen but it is a very apt exclamation for Good Friday I thought!

The best of things

‘Hope is a good thing, maybe even the best of things and good things never die’ (Andy’s letter to Red at the end of The Shawshank Redemption)

I hope I quoted that right?! It's definitely worth thinking about...

I accept (sometimes!)

Acceptance (noun)

Definition

• general agreement that something is satisfactory or right, or that someone should be included in a group

The idea rapidly gained acceptance (= became approved of) in political circles.

The party marked his acceptance into the community.

• the act of agreeing to an offer, plan or invitation

Her acceptance of the award was very controversial.

an acceptance speech

• accepting a difficult or unpleasant situation

His attitude to his children's behaviour is one of resigned acceptance.

‘Things always change…you can fight it or you can accept it. If you accept it, you get to do other things. If you fight it, you are stuck in the same spot forever’ (The Story of Edgar Sawtelle)

I definitely agree with the idea of ‘resigned acceptance’ although I know acceptance doesn’t have to be ‘resigned’. You can just as easily have ‘delighted acceptance’ to things.  Change doesn ‘t always have  to be bad obviously.

Lots of things with NF2 definitely require ‘resigned acceptance’ and trying to fight it is pretty futile anyway (tho I try and get very frustrated and obnoxious!). I think though you can chose how you embrace disability. So far, I’ve not run out of ‘other things’ I can do. For example, my mouth started drooping after my first op so I couldn’t play my flute and I started to learn the cello instead (that fell by the wayside too when I went deaf). Now, I am in the house a lot more than previously but am really enjoying writing, which I wouldn’t have had time for before (first draft of my book is done so watch this space!)

I read a book once about someone who had been disabled but recovered and actually found that hard to deal with and accept in some ways (tho she was delighted of course).  I can understand that because you take so much effort in accepting disability and ‘doing other things’ that learning not to do them is just as hard. Your identity and lifestyle change all over again.

They say its golden

‘If you love music you will also love silence’ David Hockney

People often tell me I’m lucky I can’t hear something, a baby screaming on a train, an 8 year old picking up a violin for the first time, a snorer, heavy traffic outside a bedroom window etc.

Silence definitely has its pluses and can be deeply relaxing. Once I am on my own, my brain is completely uninterrupted.

I once spent a night in an airport and slept in the lounge opposite the 24 hour cafe. Once my eyes were shut, I was in silence: no flight announcements, excited children shouting or other aural disturbances!

In my hearing days, I spent a night on a ferry across to Ireland sitting next to the children’s play area with banging and chattering guaranteeing wakefulness.

Sometimes silence is weird though, I can’t now bring myself to shout encouragement at sports like rugby because I am just shouting into silence even when 7000 others are, in fact, going crazy.

If I am watching telly, I sometimes can’t tell from the sub titles who is talking because no-one has a voice. There’s no eerie music or other things to give you clues of the mood.

All in all, silence is good (I loved music so perhaps that’s why silence is nice?!) but you can get a bit too much of good thing sometimes.

By the way, this blog might be a bit hit and miss at the moment because I have started writing a book 

(Don't) let there be light

One misty, moisty, morning,
When cloudy was the weather,

Little Anna stepped outside

Without the bright sun to get ‘er

For once she saw the houses across the street

Although, with no hold, she risked not to move her feet

But it was always the misty, moisty, morning gloom

That she looked out for from her upstairs room

Well what a catchy poem.

My vision is still pretty weak and is affected a lot by outside light. Bright sunlit days just dazzle and blind me. I have some huge dark glasses that my friend calls Alien glasses due to their hugeness. I also have an array of peaked hats to shade my eyes. Although these help, they don’t stop the dazzle.

When I go to cafes or restaurants, I need to find a table with low light, not near to a window and I usually need to play musical chairs for  a while until I find a good spot.

I have trouble seeing computer screens or reading from white paper as they glare out at me and the wording disappears (my computer is set up to read as white on black). I can’t read books but read from an i-pad.

If I am watching telly, the subtitles suddenly ‘disappear’ too if the screen becomes bright (lots of snow or the character stands in front of a window for example) I-player has white subtitles as do foreign captioned films which disappear on any kind of light coloured background (a white shirt etc).

It’s not just light that stops me from seeing things, my vision’s still weak but it does make a big difference.

People I am with outside don’t come into focus until I get inside and then they suddenly have faces! So next time you wake up and feel disappointed to see gloom, think of it as an Anna day when I will be getting the flags out to see misty moistness.

chains, dogs and snot clots

(I’m as) frustrated as a dog on a chain —Anton Chekhov

(I am frustrated ) like a clot of snot under a policeman’s boot. —Gustave Flaubert

frustration [frʌˈstreɪʃən]

n

1. the condition of being frustrated

2. something that frustrates

3. (Psychology) Psychol

a.  the prevention or hindering of a potentially satisfying activity

b.  the emotional reaction to such prevention that may involve aggression

Rarely a day goes by without approximately 77 frustrating moments. There are the big things, obviously, like  not being able to get out of the house, nip to the shop, see the sky, jump on a train.

Other, smaller ones seem more avoidable which somehow makes them worse. Today, for example, I watched a DVD of a film called Sarah’s Key, which was a good film.

The story of Sarah and her family is all in French with English subtitles but the later parts, in New York, Venice etc are in English and there were no subtitles for those parts of the film.

Other times I have been to the cinema to a one off subtitled showing of some film or other (usually a mediocre one I go to just because it is subtitled!). Once in, we get told the machine has broken or similar so  wind up watching the pictures silently.

Things like this happen so often that I am almost immune to them now.

Mind you, although I am well practiced at frustration, I am still trying to work out how a frustrated person  becomes ‘a clot of snot’? Nice thought…

And another thing...

Literally.

I was starting to enjoy days of slightly less medical routine. It had been: tablets in the mornings, eye ointment twice a day, visits to the eye hospital very frequently. All these have either stopped or vastly reduced recently but my body seems not to be content with just the NF2 related stuff or giving me a break and for the last couple of weeks, I have had a red rash on my face.

My cheeks seem to get angrier the more central heating stops the rest of me from shivering. They can glow like beacons and burn like, well, things that burn.

I visited my GP yesterday who thinks it’s  Eczema and prescribed mild steroidal cream to use twice a day. I also smother my face with E45 cream whenever it feels remotely dry. My face now looks like something from a pantomime with red cheeks and the remains of my black eyes.

Before anyone says it doesn't, my reply is inevitably ‘oh yes it does’…