Low High

Earlier this year I was super excited to head to my first concert in years. I haven't seen a live music act since becoming ill in 2006. I had tickets to see Scissors Sisters way back in 2007, but had to give them up as I was spending more time bent over my toilet or communing with the floorboards than upright. Then this year, which has been my year of worsening health and also the odd, "Screw it!" moment, I decided I was going to a concert.

I wrote about my excitement. Ella Hooper had put out a song The Red Shoes and it seemed kismet had finally gotten off it's arse and said "Here you go Michelle. After a year of shite and nearly a decade of crap you get to have some fun." In all fairness to kismet I may have misheard or misinterpreted it's words. My cognitive function can be a little poor on occasion thanks to that whole poor blood flow thing.

But here was a song about red shoes, put out by an artist I've followed for years, my shoes ended up in her fan video for the song, Mr Grumpy bought tickets, the venue was happy to help me negotiate the stairs, Ella even chatted on Facebook, and the single launch fell exactly on the one year anniversary of getting my pacemaker, Jeri, put in. All I needed was a choir of angels and nymphs throwing rose petals before me to fill in the moment to perfection.

(Artsy photo of The Red Shoes ticket in my red shoes.)

Then I stupidly declared to the world I was telling my body, "Screw you, body. I'm going to a concert. You can't stop me!" And like the petulant child it is, it raised my "screw you" with a "screw you and the horse you rode in on."

A few days before we were supposed to be heading to Melbourne my symptoms started to flare. I put on my blinkers and started some very peppy self-talk.  But things got worse, and worse. So on the day where I was supposed to be in Melbourne seeing Ella Hopper and bopping along to The Red Shoes, I was stuck in Emergency.

(Screw you body, I'm still wearing my red shoes! Even if they are squishy slippers)

I think I held it together for about the first hour, but I am not ashamed to admit there may have been tears. And for about a week after I rocked some fine ennui. Good ole Mr Grumpy did offer to still drive me to Melbourne to catch the last hour or so if I wanted, but a three hour car trip after an afternoon and early evening spent in Emergency was not exactly the best move. So I chose a pity party for one instead.

Cue a few months later and Mr Grumpy spots that Ella Hooper's album launch for In Tongues is happening in Melbourne on the 6th of December. Unbeknownst to me Mr Grumpy contacted the venue to see if they are wheelchair friendly. Sadly no, but they are very happy to accommodate me and hoik me up the stairs so I can go. After some discussion about me not wanting to get my hopes up and not wanting to waste cash again, Mr Grumpy had his own "Screw it!" moment and I am now the proud owner of two tickets to the Melbourne album launch!

(My nanna self is usually putting on her pjs and getting ready for bed at 9pm.)

So next week I am making my way to the city again. Praying to every known deity that my body will hold it together so that finally I can see Ella  Hooper sing The Red Shoes while I dance badly in my chair and sing along. No idea how long I'll last being late at night and the Summer heat, but Screw It! I'm going to give it a go.

I'm going to carpe the crap out of that diem!

Michelle

Update:

We made it! We stayed in a hotel that looked like it would fit in an episode of CSI and I am grateful there was no blue light. I frocked up. We drove into the city. Mr Grumpy carried me up the steep stairs of the Ding Dong lounge while the lovely staff did everything to accommodate us including reserving a booth up front so I could sit and see (kinda good as I ended up having to put my legs up and take extra meds as the nausea and shakes began.) I had a forbidden glass of wine and finally met the lovely Ella Hooper.The show was amazing and I had the latest night out in years. Afterwards we zoomed around the streets of Melbourne in the rain, bouncing across cobblestones and tram tracks in my wheelchair and had a ball. I was wiped out for about a week after but as you can see from the last photo I lay in bed with Freyja by the bed and listened to Ella's album.

Sometimes it really is a case of if at first you don't succeed and end up in a hospital ED, you just need to try try again, and medicate yourself to the enth degree and have a husband determined to make your dream come true.

Low High seemed the perfect pick off the new album. Amidst all the highs and lows of late I'm focusing on loving and living this life I have.

 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).