Relentless

Today I woke with the phrase “time marches on inexorably” in my head. ‘Inexorably’ is a great word.  I looked it up as I wanted to be sure of its definition. In the old days I would have got my dictionary off the shelf but now it is simpler for me to google it on my phone. Time may march (or, in my case, shuffle and stumble) inexorably on but not everything changes.

Every day my iPhone alarm goes off at 8am, 2pm and 8pm to remind me to take meds. Every Sunday it sounds at 6.30pm for me to restock my meds dockets. Every day I struggle to remember to eat. Every time I go anywhere I chant my memory mantra – “keys, money, mobile”. Every time I put my bicycle away in the garage I forget to take the battery off and bring it indoors to recharge so have to go back for it. Every day I drop something.

What I dropped today was myself. Well, myself and my bike fell. I had set out to cycle to the cemetery where my parents are buried. Perhaps I wanted to go there because it’s Remembrance Day. Perhaps I wanted to place the beautiful small stone I had found in my pocket on my dad’s tombstone (a Jewish custom – google it!). Perhaps the cemetery simply provided a manageable destination to head for rather than sitting on the sofa all day.

Whatever the reason, I intended getting to the cemetery for the traditional two minute silence on Remembrance Day. Except I didn’t leave early enough so I paused on my journey at a nearby memorial for soldiers. Having observed the silence with suitable reverence I continued on my cycle ride.

I visited my parents’ graves. I placed my stones (and a charming dropped flower head I had found at the cemetery entrance). I set off to cycle back home taking a different route just for the fun of it. I travelled using a mixture of pedal assist and throttle with a tiny bit of non-assisted pedalling just to see if I could do it. I didn’t have to stop too often to rest. I felt good. Calm. Even a little bit fit.

And then I fell. I can only remember falling off a bicycle once before. It was a very windy day and I was literally blown off my bike, embarrassingly next to a bus stop with a queue of commuters. I’m not sure why I fell this time. I was navigating my way through a half barrier on a cycle path. It was muddy. There were wet leaves on the path. And stones. With a normal bike I might have been able to regain my balance when the wheels slipped and avoid dropping to the ground. This bike is heavy. When it slips it is hard to keep upright.

I fell hard. It hurt. My left knee banged the stony ground. I think I hit my head but at least I had a bike helmet on. A couple of cyclists I had recently passed on the path came up and asked if I was ok as did a woman walking and then another woman stopped on her bike. To each enquiry as to if I was alright I said “I don’t know. Give me a minute.” Then “I think I’ll just sit here for a moment.” I knew I was sitting on the muddy path. But I didn’t care. I needed some time.

Time wasn’t marching inexorably on at that moment. This was different. Normally when I fall over, I take a moment to check – Am I ok? Can I get up? Can I walk? Recently a friend at the disabled living gym I attend had a bad fall and hit her head against the treadmill I was using. There was blood and shock. The next morning, the physio phoned me to check I was ok as she was aware it had been a disturbing situation for us all

This fall wasn’t so bad. After a few minutes I was ready to get up. To check my bike was ok. To review my banged knee. Just a graze

The lovely woman cyclist wouldn’t leave until she had seen that I could cycle again. We chatted and I discovered her daughter is currently studying at Hull University (where I did my BA). I can’t remember what her subject is but that lapse of memory is not unusual for me. I managed to get my bike chain back on – it had come off in the fall. I got on the bike. I set off cycling. I got home in time to have my 2pm meds.

I don’t know what the damage will be tomorrow. For now I have another bruise on my thigh (right next to one I acquired in a trip/fall with Jemima). It’s not pretty. Hopefully that’s the worst of it. Time will tell.

Losing it

I lost one of my pills dockets the other day. I also lost the ribbons which denote which is the front and not the back of my bag. I’ve lost so many things.

I did not lose my parents. My mum died. My dad died. That’s not the same as losing but it is a loss. A loss that I grieve for. Particularly on my youngest nephew’s birthday which is the same date as the anniversary of my dad’s death – 17 February.

It took a long time for me to be able to say my mum or my dad is dead. It sounded so final. People would offer condolences for my loss but I always thought – she/he’s not lost. I know exactly where she/he is, or rather I know exactly where both my mum and my dad are buried. Where they are now is perhaps different. They remain in my heart and in my thoughts. Especially when I lose things or things seem to disappear or mechanical/electrical things go wrong. I think my mum or dad are playing tricks on me. They’re reminding me to think of them. And I do.

What else have I lost? Well, I’ve lost my ability to remember things. My ability to remember my diary. I used to be able to keep a whole tour schedule in my brain as well as having it written down.  I’ve lost my sense of spatial awareness and geographical awareness so I don’t remember routes. I will arrive somewhere and, when I come to leave, I can’t remember whether I turned left or right to get in and therefore whether I should turn right or left to get out.

I hate losing things but I’m not losing my sense of humour. I’m still remembering that there’s more to life than little things and I’m just going to carry on as long as I can. I’ve not totally lost the plot. Now, which way do I go from here?

Top 10 unsung heroes*

I’m not much of a singer. I can perform a song and often have. Not drunk in a bar but as an actor in musical shows. I don’t do karaoke, for me singing in public is a paid activity, if anyone will pay me to do it. I once did a great public consultation street theatre exercise (paid) part of which involved me busking in the street. I don’t really play a musical instrument or, as I’ve said, sing but I played requests – CDs on a ghetto blaster. And I danced. It bemused passers by but was a good discussion starting point.

I often sing around the flat and today I would like to sing the praises of some of the people who have had a real impact on my life. My personal heroes. To save everyone’s blushes, mostly mine, I won’t sing musically out loud and will keep them almost anonymous, but I want to mention a few wonderful people.

In no particular order.

My mum – she was a remarkable woman, hard working, professional, intelligent, occasionally scary! She spent a long time campaigning for the release of Soviet Jewry or refusniks and, in her latter years, worked for the Medical Foundation for Victims of Torture. She would have been 85 on 9 June.

And my dad – as with my mum, intelligent, almost unbearably so, and wise in so many ways. After my mum died, my dad was a very important part of my life and vice versa. I love and miss them both. I am glad they have not had to live through the last couple of years since my dx.

My BFF – she is nearly indispensable to me and unbelievably helpful in so many selfless ways.

My sister – a mainstay in my life, particularly since our mum died, even more so when dad became ill then died and since I went into hospital in 2009.

My agent – she has been a friend for a long time and I am lucky to know her and her family well. Her home is a home from home to me as I have stayed there often over the years. She surprised me by visiting (with a friend) when I was in hospital, a four hundred mile round trip.

My flatmate – he has proved himself dependable and considerate.

Jax (nearly her real name) – a friend from university days who inspires me often and makes me laugh every time we talk

Nev (not his real name) – we are in touch less often than I would like but, in years gone by, he was a faithful friend and, if needed, we would drive to the other end of the country at the drop of a hat for each other. He doesn’t live in the same country as me now.

Tanzy – I think one of the first things I might have told her was that she was miscast in a show I was directing. Unusually, I hadn’t been involved in the casting or, indeed, in the choice of play but it went fine and I learnt a lot directing it and her. In the years since and, especially recently, she has been a true friend.

My MS Specialist Nurses – there have actually been four of these but *Top 13 Unsung Heroes doesn’t sound as good as Top 10. Each has been supportive, informative and invaluable in coming to terms with and managing my MS. One of them even wiped my bum when I was incapable in hospital.

I thank all of my 'unsung heroes', including the ones I haven't sung about today. Normal, less flattering service, will be resumed shortly.

What the future holds...

who knows?! 
You may have long term plans. I don’t. I never have.

I very rarely plan anything ahead. I don’t have a personal five day let alone five year plan.

There are exceptions. My diary is now littered with hospital appointments. I am hosting a Cake Break in aid of the MS Society in exactly three weeks’ time. This forward planning is unusual.

My normal response to invites to future events I would like to attend is either

a) a regretful ‘No, I am already booked for…’ or

b) a tentative ‘Yes, depending on work. But I am currently available’.

For me, work comes first. By work I mean acting commitments. Over the years, friends and family have had to get used to me dropping them in favour of jobs. I missed my first cousin’s wedding because of a theatre tour. I only have two first cousins. My family were not at all impressed.

In 2005, I agreed to go on a going-abroad-holiday with a good friend. I rarely have holidays. I am reluctant to book ahead for things in case a job comes up. It is a common phenomenon for an actor to get a great job as soon as a holiday flight has been paid for.

This holiday was to mainland Greece to join in the celebrations for my friend’s Greek friend’s wedding. My friend wanted to go for at least 10 days. I only had 7 before a good theatre job started rehearsals.

I suggested my friend could stay for longer than me but she felt it would be simpler to book us on the same flights and accommodation so we just went for a week. It was a fabulous holiday. We saw amazing places like Epidaurus, Mycenae and Olympia.

In fact all of my (very few, all bdx) going-abroad-holidays have been excellent. They have often been booked at very short notice because I rarely commit to things in advance. Many castings come at a matter of days or hours notice. Jobs get cancelled or rescheduled. There are no certainties.

In 2000, I went on a Nile cruise with my then boyfriend booked less than two weeks before. It was a fabulous holiday.

The Greece trip was my last going-abroad-holiday. That’s nearly six years ago.

I’d quite like another and now that I’m not injecting it would be a lot easier. Although I don’t want to travel alone, at least I wouldn’t have to consider potential complications of taking needles and non-oral drugs onto a plane.

I don’t know what my future holds but a holiday would be good.