a chiarian conducting a choir


yesterday i was with my neuro-psychologist discussing where i am at emotionally.

Acceptance

Rehabilitation

Recovery

Adjustment.

i am in all 3 stages – and they are valid stages to me.

the one stage i haven’t reached is Resignation…and am hoping never to.

I retired through ill health from teaching almost 10 years ago.

I developed more and more layers of invisible symptoms and to cut to chase, was FINALLY diagnosed, and put on a list for surgery Christmas last.

on 27th Dec 2013, I had a full decompression…laminectomy and the dura patch etc..

9 weeks later – having worked through spinal drains, meningitis, a burr-hole  i was sent home VP shunted.

i do remember on one occasion asking my NS (who is very straightforward) could i EVER conduct again…and I saw the look he gave me. But i explained to him when i conduct music i get very involved – would that make my shunt pop… (yeah, yeah…we all have a few stupid questions)…

I recovered…to a point and then plateaued.

my life didn’t feel better than before surgery, but had never been promised that.

but i had new eye issues, excessive fatigue, and exceptionally no leg strength.

That is where ACCEPTANCE had to begin.

if THIS was IT, then how do i adjust …

i have a great OT (occupational therapist) – who has helped me by being very STRAIGHT!

  • don’t waste energy on the stupid things
  • save energy for the bits that matter
  • dress sitting down
  • make-up sitting down
  • shower seat.
  • don’t tire your legs til you NEED to.
  • have now got about a 5 minute walk before my legs feel that they are post marathon – BUT it means 5 minutes from my house…then drag yourself home. i KNOW my limit. (attempt at Rehabilitation has now reached the point of maintaining what i CAN do)

i have no time for and you all know, object to being a SPOON! Round here it is no compliment.

BUT i have learned that Newton was not so stupid…for every action there IS a reaction…newtons-3rd-law but Newton clearly did NOT have a Chiari. And with a chiari life is not fair. And for every action there can be the most ludicrous reaction, the most seemingly imbalanced reaction. That is RECOVERY. i hated, fought, and have now learned that i have no chance of beating RECOVERY. It is my brain saying REBOOT.

  • i hate it.
  • I hate that my day’s don’t start until almost lunchtime.
  • almost everything i do OR have done to me trades off with a NAP
  • blowdry? NAP!
  • plan an event? NAP!
  • heated discussion? NAP!

i could whine and i do about what i feel is living on a half day basis, but what would i gain? Chiari wins EVERY bloody time. No i do not like it! Do you?

ever feel USELESS?

feel invisible?

feel you are not able to make people understand? even doctors?

yeah me too!!!

but there was no change to the part of my brain that had it’s talent. My creative part was still there. I was composing tunes in my recovery…i DID!…craving listening to different pieces as i slept… no getting away from the IRONY…which is that Chiari is a BRAIN defect… YET it seems my brain is my healthiest organ…and chiari can mess with every single part of my body with pain, numbness, tingling, lack of neuro transmission… it DOES… yet in my brain, cognitively, i am FINE!

And this is where Adjustment to me is an issue.

  • i start to wear Dr Martens as the broad soul and the bit up my legs, gives my numb feet more information about being FLAT on ground.
  • i lie in EXTRA long on a day i want to do something.
  • A day where i have an appointment i plan my NAP(s) the day before
  • i sleep on every journey so i can waken for what i need to..
  • if i need to do something in an afternoon, i use the wheelchair all morning to save the leg energy.
  • i obviously have a husband who i would not and could not do all of this without!
  • i try never to have several appointment on one day – if i do? i prioritise.
  • its basic but am learning (grudgingly!) to make adjustments- because otherwise it doesn’t work. Chiari wins and plans fail.

In October a bunch of ex-pupils and friends asked me…”Helen, we have to do something for Christmas.”…i was petrified. Utterly petrified. How the hell could this residue of what was ME, do what ME could do?

  • it had to be small in origin
  • friends had to establish a venue
  • the group had to be safe in people i knew
  • support from OH and dad and sons in physically facilitating…as to do a rehearsal meant THAT was my week’s output. THAT was it! there was o more than that.
  • At Christmas Caritas (the name we chose for the group) took its tentative first steps in a serious way. We PERFORMED a full 20 song program – featuring 11 soloists, a brass ensemble and a traditional Irish flavored set of carols.
  • the emotional RECOIL was frightening and powerful. But the group were special! They put on their coats and never attempted to go home…that sort of warm, comfortable group.

I had a flare up of symptoms over Christmas and a highly charged Christmas – just getting out of hospital to home for Christmas day. you know one of those days where you feel like a “cutout” of who you were? Like you are not an IN-valid, but you are in-VALID in any family sense? That day. When the can’t -do-anymores overwhelm you?

  • cook
  • clean
  • laundry
  • homework
  • choose?
  • anything?
  • be the MUM?

HORRIFIC day. but needed to happen as i thought ACCEPTANCE was about me. Acceptance happens to all the family at different stages and in completely different ways. And those days are completely necessary to reset the watches so all the family are at the same time. So a lesson – a big emotional lesson in ACCEPTANCE in Hamill’s that day.

One of the issues to come out, was that I wanted Caritas not to be a replacement of me as mum, but as a part of regaining my HUMAN feeling. So in January we began to work in earnest.

  • rehearsals on Friday 6-7.30 ( i’d rest for days in advance and recover for weekend)
  • material of all genres as we were wondering who and what we would become as it had been obvious at Christmas to me that this was like a Russian Doll structure of groups within group
  • we worked on Religious and Secular Music – a mix of classical, songs from musicals, Irish folk heavyweights…all sorts as we had no specific target group in mind.
  • the group all knew my medical STATE..as is often the butt of my rather black humour (survival) and ALWAYS the cause of any rude words or political incorrectness would be blamed on the “brain!” as we giggled!
  • There was always a warmth, and informality DELIBERATELY in the group. Nobody would feel too driven or left out, and that attitude and atmosphere became as important as the group’s music. There was never tension added to what i had to do.
  • The MUSIC teaching was effortless. Everyone has a gift, something they do in a special way…mine was always music, but even more specifically, am really good at vocal coaching and choral work. This is NOT me being a bighead, it is me accepting that this is my niche..and picking up the baton and trying my part with it.
  • i use technology to help me cover material. I write and record MP3s for each vocal section and upload it to a group page.
  • on that same secret page are ALL details of meetings, choices, all the bits you need if you are off ill for a while. So thank God for technology!
  • The getting up out of my house, driving there, setting up for choir, getting home…always done for me by dad, OH, sons, boys in group.

About a month ago I had a very unexpected contact from a person who i knew purely by name and musical reputation, asking could he make me a proposition! It was that he was now associated with a BBCRadio program “Sing Out” and that he had heard i had a new group going, would we feature. So i looked up the program as you would and the blurb states

John Anderson goes behind the scenes to meet the people and the singers who give Northern Ireland its great choral tradition and worldwide reputation.

So i realise that this program is taking a LEAP of faith having never heard a note that Caritas has uttered. This is it. You do not get a BBC offer twice.

So my body has had it all.

PREPARE

DO

RECOVER

So for the last few weeks, my poor body has been on overdrive (like i mean within a Chiarian context!)

  • the choir are SO GOOD that when i offer to run sectional rehearsals at my house, thy COME!
  • i wrote a wee “spotlight” arrangement of a piece for the traditional Irish players and an Irish soloist.
  • We worked on 10 pieces. Our repertoire was too BIG to cut it any smaller.
  • I told the BBC that they would have to record and select from all 10 cos i could not choose from among them, but i trusted them completely to do that.:) (i do know that THEY know their stuff)
  • The date for recording was set.
  • i was KNACKERED…and not just a wee bit peed off that the fatigue of arranging simple things like local PR, photoshoots, a room for recording …completely SHATTERED me. They do not come naturally, instinctively, like the music does. And ironically my 3 little friends who helped me at every stage in establishing the group were all tied up in exams…timing…IMPERFECT!
  • on that week I could not bear to get a blowdry – too exhausted
  • went to WATCH my son in a football match – but i fell asleep in the car on the way OUT there, and slept SOLIDLY until the rest of the family came BACK to the car…AFTER the match…oops!
  • had a manicure- may as well have been a surgical procedure..was just something i did NOT have the ENERGY to FACE.
  • these were days when I did not manage to crawl out of bed until maybe 3pm? but even then – on went a bit of makeup as my sons are used to me not being in “pyjama” mode unless something is badly wrong. So thank-you God for modern makeup.

The NIGHT of the recording was unreal.

No nerves…only a sense of excitement… of get on with it.

29 people in the choir on the night. 5 basses, 4 tenors, 5 altos and 15 sopranos.

I had on the big boots for balance. I had cans of Coca cola to pick up my CSF when i felt low. Everything was thought of. At 12.30 am the BBC car finally left my HOME – we had to leave the borrowed venue at 10, and many of the ladies still “wished” to be interviewed. I had never seen anything like the willingness to be part of it all as fully as possible. At that stage i could not move my legs… but my brain was BUZZING …adrenaliine surge was HUGE.

For that night i was HUMAN.

i DID what i can do.

i KNEW i was going to live in a special physical chiarian hell for the next week – BUT with a smile on my facemenotgiveup

i knew that for the week that followed i would be literally crippled, and i was.

I did not leave the sofa OTHER than to use the loo or go to bed.

I slept in till silly o clocks and STILL had NAPS…no choice. my brain and i have realised this now…it is in charge of me.

But last night on BBCRadio my Choir performed –

  • a chosen 4 of the ten songs, and
  • we had a 12 minutes solid of my friends, my choir people talking about what they get from Caritas,
  • how much they love it.
  • How they got involved.
  • i sat here at home – ALONE – full of tears.
  • MOVED at the genuine warmth and caring in the group, the love of music,
  • the REASON i did this.

please listen. I am disabled. BUT i am able when it matters to do something special…and i did.

Caritas at 18 minutes into program

I have a bursting headache today.

but i felt great last night to be HUMAN.

Was it worth the HELL to feel HUMAN? for that NIGHT? to DO what you used to DO effortlessly? HELL YES!and have barely moved since! but YES YES YES!

and please see the group as it grows up:) hopefully, usually with me !

Caritas

courageandst

oh… and i thought i would share….the LOOK….! although i think they exaggerate in caritas….Caritas BBC 01

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4 comments

  1. It is really wonderful Helen, not only tha amazing sound, but that you are able to do that. You are still you & we all benefit from your talent 🙂

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