Locked Doors

I need the toilet I say to Mr H on a recent day out to a countryside event. The disabled toilet is there. He points at a small grey horse box with a ramp beside a portacabin with steps containing the ladies and gents toilets.

Leaving my rollator at the bottom I grab my sticks and walk to the top. 

A notice says that the key is in the first aid tent. I try the door anyway. 

Locked 

Surely my usual disabled toilet radar key will fit. I pull it out of my bag. 

NO. 

I spy a green and white tent behind me. I wonder if that is the key tent. 

It's a good job I'm not plaiting my knees I mutter...

I walk back down the ramp. Put my walking sticks back into their holders on my rollator and head to the tent. I ask about the key. 

Ah yes the first aid lady says I’ll let you in. She walks back with me, opens the door and I enter. At last I can wee…

Wee done and toilet flushed a chemically blue, I stand and press the tap to wash my hands at the basin. 

Nothing comes out. 

I try again. Still nothing. 

I press the soap dispenser. Nothing. Try again. A tiny blob of something hits my palm. Could this be gel I wonder as I sniff, while staring at the waterless tap and large sink. I rub it hopefully onto my hands and leave.

I walk back to the tent to advise the key lady that I have finished as she requested, I also tell her there is no water or soap. She says she’ll lock up and look into it.

I am not filled with hope.

Before I turn around to leave I ask a question to which I already know the answer; Are the toilets for the able bodied also kept locked?  

The lady pauses and looks at the ground as she replies 

No they are not.

I walk away.

I ask Mr H if there was water, soap and paper towels in the gents. Of course he says.

This is what living with a disability looks like. Accessibility is the buzz word. But how can that toilet be called accessible when the less mobile are forced to walk extra distance to ask to be let into a toilet which then doesn’t have the basic facilities. 

Mr H and I raised our concerns with a few staff but it remained locked. 

Well that toilet story has warmed me up…

There is no such thing as click and book in relation to a hotel room when you are disabled. We always have to phone the hotel direct. The search is arduous because not all hotels have accessible rooms. If they do they vary drastically, there is no standardised accessible room.

I have learnt to be specific about my needs when booking accommodation:
I need a lift if the room is above ground floor.
A walk in shower with grab rails is essential.
A higher toilet is desirable but not critical provided there’s a rail I can grab to stand if the loo is too low… I have already yanked on too many wobbly sinks and toilet roll holders when trying to get off a low toilet, wondering if I will have to shout for help.

But before I pick up the phone I start my Google photo research to identify if I can get into and out of any of my shortlisted hotels independently. For me that means checking photos of the entrances for step free access.

That information in hand I pick up the phone. 

But here’s the catch even when you phone and request an accessible room most hotels will not guarantee you’ll get that room when you arrive.

So I emphasise that my booking is conditional on getting the accessible room and I pursue the hotel until I have a written confirmation that I am guaranteed a suitable room.

Then I lie down in a darkened room for a week wondering why I travel and why I feel so tired!

Unfortunately for those who seek accessibility, the choice of room is usually pretty limited. You can forget asking for an accessible suite in a swanky hotel should you be lucky enough to afford one. Most hotels only turn a couple of standard rooms into truly accessible rooms which are (hopefully) suitable for someone with limited mobility or who requires the use of a wheelchair to get around.

But it doesn't end there. I then always contact the hotel a few days before we go to double check that they still have the accessible room available. 

This may seem a bit excessive to the routine hotel click and bookers but it is essential as previously the day before we were travelling, my booked and confirmed accessible room was allocated it to another customer who decided to stay longer.  I was offered an alternative room with a bath! A bath! 

So with a happy grin I sigh with relief when we arrive and find that the room and venue are as accessible as indicated in print and in photos. Except for the locked toilet of course!

A Ticking Clock

As I listen to the gentle ticking of your miniature Swiss cuckoo clock I realise that 8,760 hours have now passed without your physical presence mom. 

That’s 525,600 minutes without speaking to you. 

365 days without your daily messages pinging into my phone. 

52 weeks without a photo of your handwritten shopping list arriving in my WhatsApp ready for me to order your grocery delivery. 

12 months without your squeezy hugs that we loved so much each time we saw each other. 

Too many to count moments of thinking I must tell mom that… and then remembering I can’t. 

A year without you by my side on windy wet walks along a beach...

and constantly talking to the air around me and hoping you can hear.

But I am thankful for the 61 years of unconditional love you gave me. The 61 years of quiet guidance, encouragement and support. 61 years of precious memories spent with my strong mom to treasure. 

I now understand that learning to live my life with a momentous mom sized hole in it is going to take time. 

But in your physical absence you continue to influence my life. I have now catalogued and packed up all your Adult School Union papers and as promised they will be cared for in the Birmingham Library Archives and Collections just as you wished. 

I am working on an article we talked about when you shared your memories with me about your speedway and motorcycle antics with Dad… 

You would be thrilled to know mom, that Mr H and I are Planning a holiday to follow in you and your parents & cousins footsteps on a trip you did in 1954. 

And as I work my way through all the papers I have from your lifetime, I know many other stories will emerge. 

But most of all at the moment I am thankful for the many hours you and I spent poring over old photos recording all your memories on tape… 

So at the press of a button I am able to hear your voice once again. 

Is that a Buttercup?

Mr H and I sit on a cold damp bench during a walk around the woods up the Lickey Hills. The autumn sun tries to break through the thin cloud above us, while amongst the many moulted bird feathers I spy something yellow a few metres from my feet.

Is that a buttercup I ask Mr H?

He laughs.

Is it the top of a packet of peanut M&M’s then, I ask thoughtfully with a rumbling belly?

No…

I get up and take the few steps needed to reach this yellow thing or two… Ah it’s tiny autumnal leaves I smile. They have fallen from the trees which I have just been hugging.

We are repeating a walk we did in January. There were three of us and a rollator then. Mr H, my precious mom and me. We were on a tree hugging pilgrimage with mom. The trees were almost bare of leaves then, but not of hugability.

Mom chose tree after tree for us to hug, can you feel the energy from this one she grinningly asked.

This one is really buzzing with energy, can you feel it?

Sort of mom we said as we pressed our cheeks closer to the bark.

Now nearly eight months later it is mom’s energy I hope to feel when I hug the same trees. 

In September we said a formal farewell to our precious mom, the person who has been at the core of my life since the day I was born. Mom spurred me on through self-doubt as a child; sat for hours with me late at night while I cried with worry about tomorrows’ spelling test at school; grinned with joy when I passed my first degree.

Mom never doubted my ability to become a nurse and let me fly away from home at the age of 17. I was unaware how hard that was going to be for her until the tears started to trickle down her cheeks when we ate Sunday lunch the day I was to leave. I was only going a few miles up the road I said, not really understanding how big an event this was for her. But I was home again the following Sunday, back at the dinner table before leaving again for my next week as a trainee nurse.

As we start a life without you mom, there will be no more daily calls to hear your voice as you tell me what was missing from the shopping delivery.

No more letters arriving on the mat containing coupons that you have collected for Mr H from your butter packs so we can stay for free at the organic farm which produces it.

No more poring over old photographs and documents with you, trying to piece some part of history together to our satisfaction.

No more giggling together as we ate another cream tea...

But you were the inspiration for me to write the book about your beloved Adult School, my encourager, my assistant researcher and fact finder. Completing that book in the knowledge that I had achieved exactly what you wanted was the best thing I have ever done in my life mom.

Wear bright colours no black, you told all three of us numerous times when we discussed your funeral in advance. So, like a rainbow, the room was full of purples, blues and pinks. You were at the core of the service we put together to celebrate your life mom.

I wrote you a letter which I read to you at the service. But I am sure you heard it every time Mr H had to suffer another practice run. And I know the strength to deliver it with both tears and laughter, came from you.

But I also realise you haven’t really left us mom. My heartbeat is your heartbeat. Every thought I have will be with you in mind. Everything I do will be because of you…

 

Crafty Chocolate

Nowadays I am not allowing the crafty creaminess of chocolate over the threshold of our doorstep. Anyone who rings the bell is searched before entry. 

When Mr H comes home, a rustling shopping bag in hand, I wobble out to the kitchen to catch him before he sneaks any shiny packages behind the tins of baked beans.

I inspect every naughty purchase he has made - all items I refuse to add to the online delivery. He has two packets of extra fruity hot cross buns, two big bags of crisps and 1kg of peanut butter. 

I hate peanut butter so that passes for entry to the larder. I can easily avoid eating hot cross buns. But I groan at the crisps because like chocolate, one nibble and I transform into a salivating, snack hunting, cupboard swarming, demon. Reluctantly I accept their entry into the very top shelf with a warning;

Do not give me one. Not one. Even if I beg! Do not bring a bag into the lounge. If you want some put them in a bowl and eat them before I realise they are gone.

He nods a reassuring promise. 

But Easter is drawing near. I can tip toe (I wish) past shops, do all my online shopping with a full tummy, tell everyone not to buy me anything chocolaty. 

But my naughty mind has a voice of its own;

Go on just one mini egg they are only 1 syn each…

Just a nibble of dairy milk will be fine…

You can buy a pack of mini Twix and ration them…

But my sensible mind knows I can’t. 

So on Monday when my Slimming World consultant, Beautiful, Bubbly, Bonny says she has an idea to help us avoid cracking under the Easter egg pressure I move to the edge of my seat. 

Out from under the table comes a basket full of polystyrene eggs. Take one and pass the basket round Bonny tells us. 

There is a pot of felt tip pens on the table and the plan is that we decorate our egg to look like Bonny giving us the evil eye… 

Sorry that’s not what Bonny actually said. With a Bonny grin she said … 

Use your decorated egg as a reminder to be careful at Easter should you be tempted to reach for chocolate or any other trigger foods. 

So this is my version of Bonny saying NO CHOCOLATE. Bonny now makes me and Mr H smile every time we walk into the kitchen. And interestingly it is working as a deterrent…

Disclaimer: apologies to Bonny for my complete lack of artistic expression…