Tuesday, 29 January 2013

It's a MSsy business

Yesterday I met my first real life MS person.
Thanks to the wonder of Twitter, I have made some online friends with MS. But until yesterday, I had not been brave enough to actually meet these people in person.
Instead I preferred to imagine what they looked like and pictured them in their homes with their lives going on around them. I gave them careers and families and even chose what cars they drove if they could drive.
Then out of the blue, I had a direct message on Twitter from one of my online friends. Would I like to meet for a drink with a couple of other people who had MS?
At first I was smothered in a feeling of being part of a new gang that wanted me to join and I replied yes please! But soon after that feeling started to change. And I began to wonder who these people really were. Would they be nice? Would they be 'normal'? Would they be a bit clique-y? Would they be a bunch of moaners who were going to drag me into an MS slump? Would they gang up on me?
And so the elation turned to dread and I quickly found something else to do that day.
But my MS friend didn't forget me as easily. And another invitation soon followed. This time a one-on-one.
By God this friend was persistent.
"Right," I thought, "I'll meet her for half an hour for a coffee. Job done."
And so arrangements were made.
But in the misery I have been loitering in recently, our coffee date was shoved into the recess of my mind and I forgot about it.
Until yesterday morning, about an hour before we were due to meet, when my treacherous mobile phone helpfully beeped a reminder while I was at the opticians.
I dabbled with the idea of standing her up. But my conscience stopped that notion in its tracks - after all she may well have made a real effort to meet me and I didn't know if she had mobility problems.
I was going to have to do it.
So I made my way to Starbucks (yes I know they are tax dodgers but everyone knows where the Starbucks is) and waited in the queue to place my order.
Helpfully the Starbucks team now have to ask customers' names when they place an order so I was listening intently hoping to hear my friend's name being given.
Nope. I didn't hear it.
After getting my coffee, I scanned the cafe. How do you find someone with MS?
I shamefully confess I was looking for someone with a visible disability. Someone with a stick, or a crutch, or a wheelchair.
But there wasn't anyone in the place who had any of those tools.
I sat down. And I text my friend. She replied "I'm coming in now" as I watched the door and spotted her.
The nervous knot in the pit of my tummy tightened as we greeted each other.
But you know what, it was ok. It was more than ok. It was good.
She was nice. She was friendly. She was normal. And I really liked her.
Our half hour coffee date went on for more than an hour.
We chatted about normal stuff. And about MS stuff. And about MS people we were both in contact with.
And then I confessed that my name Sian isn't the name I go by in real life, rather it is my middle name and my MS alter ego.
When I was in the MS closet I was Sian. But now I am out of the closet and people know I have it but I still like to pretend it is Sian who has MS and not me. (Yes I know I am a weirdo but it's an identity thing...)
She laughed. She thought it was funny.
We shared stories of how we were affected by MS, how we were coping with it, how it still screwed our heads up when we were least expecting it.
She well and truly popped my MS cherry - and I am glad she did it so gently.
Now I want to meet my MS online friends in person and I want to become part of the gang.
It's a funny old business this MS thing and sharing it with people who know what it is like too can only help turn it from messy to MSsy.

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