Monthly Archives: May 2014

The Show Must Go On

Tomorrow – 14 May 2014 – would have been Steve’s 53rd birthday.

It’s been over three years now since Steve opted out of this life in the flesh and blood form of carbon. However, as readers will have noted, I’m not very good at accepting the ‘nothing after death’ or the  ‘moving on’ option. I am quite happy to include Steve in my daily life and acknowledge his existence still. Huntington’s disease (HD) took a lot away from Steve, but not Steve from me!

For Steve’s birthday I have bought him a Crystal Palace Book, which interestingly stops at 2011.  I will read a bit out loud to Steve circa 5pm each evening, just  as I used to read to Steve aloud in his last years. That is once I have finished reading the book I got him on Ian Holloway, a very interesting character. I’ve also got Steve a set of personalised CPFC coasters; a Simon Amstell DVD and a box of chocolates (no description needed here lol).

In a television documentary Billy Connolly is currently presenting on the industry of dying – Billy Connolly’s Big Send Off – he laughs when being told about a widow who pours two cocktails every day to share a cocktail with her late hubby as they would have done in life. He suspects the widow drinks the hubby’s cocktail too. I bet she does bless her. I will eat Steve’s share of the chocolates; will enjoy reading the book, watching the DVD and the coasters will come in handy too. Like they say… “It’s the thought that counts.”

I’ve done a new poem for Steve below.  I didn’t do a poem last year as I was too preoccupied with the E-Petition from the looks of it but you can see the 2012 birthday entry/poem HERE.  In the 2012 poem I mention ‘We’d see We Will Rock You when you were alive’. I was sad to hear We Will Rock You is due to close at The Dominion on 31st May.

I’m very sad that Steve and I didn’t get to see it again after 2010. Not only was Queen Steve’s favourite band, and We Will Rock You his favourite show, Steve shared a birthday where the show opened on 14 May 2002. Steve and I didn’t get tickets for the opening  night but we did see the show later that opening week.

I had a box at The Dominion booked for Steve’s birthday in 2011 to see it again. Even in Steve’s weakened state he asked about the show a couple of days before he died. This is extracted from my memories spreadsheet (more on that another time).

‘…among the papers and notes I have kept is a scribble on a notepad which I did a few days before you died. I noted you had asked “When were going to see Queen?” I wrote the word ‘Bless’ beside my little note. Obviously I replied “on your birthday” to you but I had to move away and write the episode down at the time.  I was so overcome with your enthusiasm and overcome with my own grief knowing deep down the true answer would be “never”.

There’s that saying along the lines of not regretting what you did, but what you didn’t do. I’m very grateful that I had the time; money; determination; bloodymindedness and downright audacity to ensure Steve and I managed to still participate in being part of society. Not totally shut within four walls but having holidays and seeing shows.

We had to go by privately funded/voluntary ambulances in the final years. I had to arrange everything with more planning than a military operation at times and even then things still went wrong  (more below), but I’m damn proud of myself for not giving up. I’m even more proud of Steve for not giving up and clearly wanting to embrace life even in his poor  physical state of being! It was hard work, it was ridiculously expensive, but it was worth every penny and ounce of energy and exasperation  to see Steve living before dying!

As well as my new poem, below I have inserted a set of photos;  and an extract from a blog I was writing in 2008 covering Steve’s Birthday and our birthday outing that year. I am truly thankful I have so much documented of mine and Steve’s life together in words and pictures. Of course, a lot of what I read and see can be sad rather than uplifting but that’s how life and death is…

The photos are as follows:-

Photo 1 shows me and Steve in May 2008. It was taken on 18 May 2008 at a family gathering in Swindon and just  a few days after we went to see We Will Rock You.  Steve is sporting one of the tee shirts I had printed at SnappySnaps Greenwich [no longer there sadly] as described in the blog. Steve has no doubt said something that has amazed me and made me very proud again.

With Steve’s HD he had difficulty remembering the more mundane everyday stuff but had an incredible memory for stuff that happened years and years back and was always accurate! He didn’t say much when participating in social gatherings but what he would say was usually quality! My family were wonderful at making sure time was taken to listen to what Steve had to say and ensuring group inclusion as far as possible.

Photo 2 shows me pushing Steve in his wheelchair just two years later. Another birthday trip to see the show and sadly our last. Steve is sporting another Queen tee shirt which I got for him from Ruby the cat. The wind is about to blow away Steve’s Park House baseball cap but he managed to keep it on and I still have that cap in the memory trunk along with one of the Queen tee shirts. The other two went with Steve in his coffin, alongside the ticket stubs and programmes for shows and Crystal Palace games.

Photo 3 shows Steve in the last photo I have of him sitting up. It was taken 20 December 2010. We had booked to spend Christmas at Park House and were on a tour of the grounds of Sandringham.

The snap is taken where we parked outside the Estate Office with it’s wonderful architecture and Royal Coat of Arms. Steve is sitting up so well considering he is so weak at that time. It took a lot of effort and physical strength for him to carry on bless him. Within six weeks of that photo being taken Steve died. Some would argue Steve would have been better off had I cancelled that trip and kept him home that Christmas. As I mentioned above though… just a few days before Steve died he was asking when would we be seeing We Will Rock You again?

Steve needed to have things to look forward to and feel ‘able’ like others, not disabled to the point of bedridden. To have cancelled the Park House Trip would have been emotionally cruel as he didn’t comprehend the end was so near. There is also the argument that, by not prolonging Steve’s life by wrapping him up in cotton wool and taking away the things that mattered to him, in the process he had a dignified death. By that I mean he didn’t have his life drawn out in a hospital bed not really living but merely existing.

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Steve 2

 

 

 

 

 

 

 

 

 

 

 

 

Steve 3

 

 

 

 

 

 

 

 

 

 

 

 

Poem for Steve:

Memory Lane. The continuing walks with Steve. 

Another trip down Memory Lane,

The walk now getting longer.

I stop to smell the flowers more,

Their scent grows weak, not stronger.

 

Although the scent is fading,

Or my senses less aware,

I bend to pick the flowers still,

To show you I still care.

 

I don’t take flowers to your grave;

Your grave’s still here with me.

No cold stone slab with chiselled words,

And dead for company.

 

You’re still among the living,

And The Show it still goes on.

They say grief’s mental illness,

And perhaps they are not wrong?

 

The snaps, we took which I include;

The Blog and poetry;

They’re all reminders of a life,

Where you form part of me.

 

Enjoy the living while you can;

Let smiles wipe out the crying,

And show the world you’re still with me,

Defined by LIFE, not dying!

 

ADAPTED FROM  FROM ‘PIMP MY BLOG‘ (Copyright Trish Dainton 2008)

Week 2 – We Will Wreck You!   [Entry for 12th – 14th May 2008]

Monday is my day Bob comes over to give me 2 hours respite. It’s great to get the Crossroads Care service but I find myself getting up early and having to rush around getting the place extra tidy and make sure the fridge and cupboards are stocked up with milk, tea, biscuits etc. Not that Bob has anything more than a glass of water but I want to make him as welcome as possible.

Bob is a complete sweetie and even turned up when he had just taken his wife into hospital in labour for their first child. He didn’t want to let me down! Obviously I sent him straight back to her. During our first meeting I asked him how he got into voluntary caring? He replied he came from a country where it is natural to help out the elders and family members in need. He used to volunteer help to those with no family in his homeland so when he came here he naturally volunteered his help. He’s about 35 I think. Bless him.

I wanted to use Mondays’ respite to look for something else to get Steve for his birthday on Wednesday. He was already getting a book from Amazon.com (Slash – The Auto-biog of the Guns and Roses Guitarist); and a record (REM – Accelerate); 3 pairs of pyjamas and a pair of slippers from M&S on-line. On top of that I’d already said I’d take him to We Will Rock You again. Every day since I told him about the show he would ask ‘When are we going to see Queen again’? He was very excited to be going.

Thing is, Steve had asked for the record and book, I’d told him about the theatre as I would need to gear him up for going out that day and the M&S surprise was spoilt when Steve heard me calling to chase up delivery given all the other items had arrived yet that bit had been ordered before others. I therefore wanted to get Steve a little surprise gift as his family send him cheques and cash which is hardly exciting to open up.

On my way to the bus stop to hit the shopping centre I passed a photo printing shop and a canvas print of Marlon Brando caught my eye. I went in to ask if they had any of Queen whereupon they showed me their photo selection and I was told they could do something in poster format, canvas, or tee shirt for next day collection.. BINGO  It occurred to me getting Steve a tee shirt made to wear at the show would be cool. I couldn’t choose just one photo so opted for two shirts which I decided afterwards was probably for the best anyway. We were bound to have an accident involving food down the front of it and I carry a spare top is part of my normal routine when we go anywhere these days anyway.

Having thought I’d be spending 2 hours looking for ideas, and then probably buying another book or record just for the sake of going back with something, I was very pleased it only took about 15 minutes and was something to treasure  So pleased in fact I decided I could use the respite for what it is really for… ME TIME.  With that I walked just down the road to a pub that does great food and music.

The Gypsy Moth is not only a great pub but I associate it with good memories from my childhood. My dad used to take us there as part of day trips we used to do on school holidays. He loved Greenwich and we’d take a Thames pleasure cruiser from Charing Cross Pier to Greenwich for the day. Me, my mum, and usually at least one other of my siblings of which there are 5.

As dad was in the Royal Navy and then the Marines for a while after he loved the National Maritime Museum and all things nautical. Although the day was billed as a day out for us I think we all knew it was his day more than ours but no one would begrudge him.  I could never have imagined then that I would one day be living in Greenwich and The Gypsy Moth would be one of my locals.

Food and drink ordered I decided to contact a guy from The HDA Message Board to ask how much he was paying for tee shirts he was using for a fundraiser. Due to having text as well as photos to print his shirts were always going to be more expensive than mine. However, I asked if I could  try to better his quote  through the print shop I had just used and he agreed.

After a lovely lunch, only invaded this time by the one American tourist asking me questions, I got home to find Steve was agitated and Bob telling me he’d been asking when would I be back after about the first half hour. Having already explained to him that morning it was my day to go out I STUPIDLY automatically said “won’t be long” before going out the door. He’d latched onto that closing statement and was pissed off I had been out longer than 5 minutes.

Tuesday I collected the tee shirts and was very pleased with them. Before going to bed I allowed Steve to open the cards he had received early for his birthday the next day. I’d already agreed earlier in the week when the canny devil reasoned that as he would be so busy on Wednesday he would have to have his birthday the day before!  And to think…. people wonder why I say he is more like a child now   I drew the line at letting him open his prezzies the night before though and it was just as well we didn’t do the whole birthday thing that night.

I mentioned to  Steve he would be getting his book and record as he wanted in the morning but his pyjamas and slippers hadn’t arrived yet so not to be too disappointed. He then asked about the “Willie Wonka” thing”. After a moment of trying to think what he was on about, and wondering if he was expecting a hand job or something else lol , I realised he must have thought I was baking him a chocolate birthday cake with the packets of Venezuelan Black pure cacaoI had ordered a while back. The order for pure cacao had been on the back of our seeing a Channel 4 programme ‘Willie’s Wonky Chocolate Factory’.  I explained I couldn’t use the chocolate as I needed a whole bar to make just one thing and I was waiting to see when I could get more but we would have plenty of chocolate for his birthday tomorrow I was sure.

I managed to dash out on Wednesday morning before Steve woke and through our life saving M&S Simply Food managed to bag a hand decorated chocolate birthday cake, a small box of Belgian Chocolates and a bottle of bucks fizz for good measure. The corner shop would have candles and holders. I was relieved Steve had said something the night before otherwise he would have been so disappointed not have a chocolate cake on his birthday bless him.

On the way back home I had another flash of inspired thinking  Poor Steve was due to be seen at home by the oral hygienist and nurse on today of all days. They are very good with him, and I’m very grateful they come to us, but he does get stressed out when seeing them although it’s less and less each time. I had the idea of not giving him the cake myself but setting it up so that the ladies would walk in with the candles lit and we could all sing happy birthday with Steve thinking they brought it for him and thereby associating them coming with good things, not bad.

It worked a treat and brought a great big smile to his face. The session went really well and he loved it when they remarked on his Freddie Mercury tee shirt and how smart he looked to which he had his first fairly cohesive exchange of small talk with them. Steve’s’s gums are looking really good now and they praised us both for doing so well. It was nice to see their session being less stressful for them too as before now they have felt awful about virtually putting Steve in a head lock just to look inside his mouth

A large slice of cake and glass of Bucks Fizz later we headed off to the station to get into town to see the show. It’s a 5 minute walk from our place to the station but having to play guess which end of the platform the shortened train would stop at was a bummer.

After a Potty stop at the station, and visit to the chemist to buy foam earplugs, we got a ComCab very easily. Although there are queues of taxis waiting outside the station it’s only certain ones with a bold target symbol on them that take the TaxiCard. The card makes a huge difference on the price of cabs so they are worth waiting for. I could have booked one to meet us through the telephone booking system whilst on the train but we’ve had a few bad experiences of cabs saying they had turned up and we didn’t show when it’s quite clear they just couldn’t be arsed to get out of the cab and come find or help us. WE can even get charged for them if they insist they have lost fares whilst waiting for a no show even though we WERE there!

The cab dropped us off around the corner from the theatre. There was no place to park outside but the distance wasn’t too long. I wanted to go to MacDonald’s anyway for a cuppa and snack for us both but it would appear Muccy D’s has gone. I managed to settle Steve in a nearby coffee bar with his newspaper and did a recky for somewhere to eat but we ended up across the road in a bar called The 101 Bar.

Steve had orange juice and it’s annoying how many bar people don’t seem to understand that when you ask them if they can “just fill the glass up halfway” it’s for a good reason. I ended up having to ask for another empty glass again and splitting the drink so that Steve could hold it without spilling it everywhere. I had a Pimms and Lemonade and was pleased when the dishes of goujons and potato wedges came with lots of salad.  That way, if Steve didn’t like the chicken he would at least be able to eat some cucumber and tomato. He did manage three goujons before telling me he didn’t want any more but turned his nose up at the wedges. Sadly the menu was very limited and we’d had to make the best of the situation. Steve ate mine and his share of salad which is a good excuse for me not to feel too guilty about not having 5 a Day. Then again I counted the fruit in my Pimms as one of my portions. I’m working on the Vitamin C having been absorbed into the alcohol that is.

The throngs of tourists milling around the outside of the theatre and those queuing patiently to get in was a real bummer. We hung around the periphery for a while  not wanting to get Steve lost or crushed in them, but after a while I decided needs must and basically walked through the middle of them dragging Steve through as best as I could. We must have both looked seriously frazzled by the time we got in the door as the guard waived me though when I was struggling to get Steve to hold one of my three bags (handbag, carrier bag with coats and another bag with spare tee shirt, pants, napkin, spoon, fork, bowls, water, wet ones need I go on?

Whether we had also been noticed by someone, or it was a stroke of sheer luck I don’t know. However, a nice young man came over and asked if we needed assistance? He patiently walked in front to show us to our seats and then came to a halt when he twigged the stairs would be out of the question. In booking the tickets I had asked about disabled friendly facilities so was expecting a slope or something. He apologised and asked to be excused while he got the key for the lift.

Back a few minutes later I was expecting to be shown to the side of the area where a proper lift would be but no. The lift he referred to was like an open platform version of a Stannah Stair Lift thingy for wheelchairs. I hopped on first then pulled Steve over to hold on for the ride but that had to be aborted when we couldn’t lower the safety bar and the sensor didn’t like it either as it was sensing something standing.

We finally got around it by our man going and getting a small chair; me standing outside walking to the side reassuring Steve; and the poor young man having to walk backwards down the stairs with his arm stretched over behind Steve to keep the button pressed. We did have to stop half way down when the guy was in pain! This was where Steve, in a state of panic, decided to lean on the chap’s arm with full weight and it now being crushed.

Having finally negotiated Steve off the chair and lift (not being helped by his having his back to us when he came off the other side) we got to our seats and had the usual problems of trying to get him to sit only when the seat was pulled down and not beforehand. Of course, we had to then go through it all again when we wanted to use the loos, which incidentally were vary close by as requested.

With Steve having an aisle seat people wanted to get by. They only did that the once though. After seeing the hassle it caused  people were clambering over the backs of their seats or going the long way around. With enjoyment enhanced by having remembered to buy the earplugs, and not being deafened by the end of the opening number, we sat through the first half and it was as good as we’d remembered.

True to his word our lovely little helper came over at the interval to check all was well and when I asked if he could just keep an eye out for Steve while I dashed in and picked up our interval drinks (pre-ordered on a sneaky trip to the loo) he went and got hem for us. Bless him.  I made a point of saying to the couple next to us, who’d been giving me sympathetic looks every time they caught my eye “Well there has to be some advantages to being disabled. We get personal service”. When the show closed Steve had obviously had a good time and we sat fast waiting for assistance and the ride on the stair lift again which was less fraught this time.

Coming out of the Theatre we headed back to where we had been eating before as there were still tables and chairs outside. I had to stop and park Steve holding a rail for 5 minutes though as I suddenly remembered we hadn’t got a Souvenir Programme.

The doors were closed to the Theatre by now but I banged to get the attention of one of the staff milling around and he opened the door probably thinking I’d lost something. Our little angel rushed up again to ask if everything was okay (probably having kittens at not seeing Steve attached to me). When I asked if they had any Programmes left the darling dashed off and got one! I’d given the guy a tip on the way out anyway but when I held out a £20 (too embarrassed to rummage around the coins in my purse). I told him to keep the change given his kindness but he told me not to be silly and the Programme was compliments of the Dominion.

Parking Steve on a  chair outside The 101 Bar I looked out for a ComCab within the hundreds of black cabs that seemed to go by but they were all full up .Our position between stations meant most were picked up before they got to us and none were dropping off. I didn’t want to leave Steve for too long to go and walk to a station and hail one. I’m glad I stayed close by because after about 20 minutes the bouncers asked Steve to vacate the chair as they were bringing them in off the pavement now. My plea to let one stay outside for Steve  until we could get a cab fell on deaf ears

By this time I was getting frantic and called TaxiCard to book a cab. A half hour later, and no sign of our cab so I chased it up only to be told the cabbies couldn’t find us!! We were across from the Dominion Theatre in Tottenham Court Road, outside a Bar with its name in Neon lights next to Centre Point! Apart from hiring two Mr Blobby Suits and holding up a 10 foot banner I don’t know what else I could have done to flag up our position!

We finally got home just after midnight when, having given ComCab a right b#llocking and probably setting off a cancellation of our account, I hailed the next black cab and paid about ten times what we should have. Thank god our little angel had been professional and kind enough not to take my offer earlier of the £20 note. I didn’t fancy having to add a cash point stop off in London at that time of night as well. Fortunately, with a couple of notes Steve had in his pocket as well we managed to pay the cabbie. Home at last with one tired but very happy Steve and grateful but frazzled Trish.

 

 

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