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Knock on any door

7 August 2015
The Unaffected One
My MS Journey
Public transport
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My grandmother had a saying “knock on any door and you’ll hear a story”. She knew how to put the kettle on quickly and she always had a tin of some nice, home-baked treat to enjoy with the tea and conversation.

Battling public transport is not a bad time to practice “door knocking”.   How often when you get on a train in the morning peak do you find every “special needs” seat occupied by people who look as if they’d be perfectly fine to stand?  If you look as well as I do, you’ve probably never dared to ask if anyone is able to get up and give the seat to you, no matter how torturous your poor balance or fatigue make a standing journey.  Look again.  Is it possible that healthy young lady is in the early stages of pregnancy? Could the overweight, middle aged office worker suffer a chronic pain condition that makes standing impossible?  No doubt the seat is often taken by a “normal” person who just wanted to sit down, but why should I assume my own invisible challenges are the only ones out there if I don’t even ask whether any of those taking up “my” seat would reasonably be able to stand?

I make a point of taking one of the disabled seats, if one is available, when I use public transport – partly just so I’ll know that at least one of them is being used by someone who would genuinely find it difficult to stand!  The last time I did this on a tram in Melbourne, I was on my way home from getting a dose of IV steroids for an MS flare.  My walking was OK, but I was dealing with quite severe vertigo (to the point that I’d vomited at the hospital before the drip got started), worse than usual balance problems, blurred vision and debilitating fatigue. A few minutes into my journey, a blind gentleman got on with his guide dog.  The tram driver immediately came out from his cabin to ensure the blind man made it safely up the steps and then turned to me and said “Please stand up. This man needs that seat”.  What should I have done? The bandage on my hand was proof I’d just been having IV therapy at the hospital, but clearly this was not sufficient to make my need to sit down apparent. Fortunately there was one more seat vacant further down the tram, so I stood up and (very carefully “furniture walking” to avoid a fall) went and sat down there. It wasn’t a disaster.  I made it home safely and I got to sit down for most of the journey.  But if I’d ever had any questions about what other people think when they see me using a “special needs” seat, I now know for sure that they think I’m the person who can be told to give it up to another with “real” needs.

So I get back to my grandmother.  There were plenty of things in her life that she could have demanded sympathy for.  She was a war bride who somehow managed to feed, clothe and shelter a tribe of small children on her own at a time when women were not well equipped to earn money and many things were in short supply. In later years she often spoke of her pleasure when her sweet-heart returned home safely, but I never heard about the hardship she’d endured in his absence. As she aged, she dealt with her own health issues and those of a husband who barely remembered who she was. Throughout it all she maintained a keen interest in the lives of others.  For as long as she was able, she cooked and sewed for and visited all manner of people who she knew were in need. Near the end, when she was unable even to live independently, she still asked after all sorts of people and listened to their news with genuine interest.  She wasn’t a saint, but she understood how to find happiness in the hand she had been dealt and she knew that joy can come from helping others, even just by listening. She died before I found out I had MS.  But I don’t need my grandmother in the room with me to know some of the good advice she might have offered if I were ready to listen.  It’s beautifully summed up in the “serenity prayer” she had hanging on her kitchen wall – and that hangs in my kitchen now. May God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

 

The Unaffected One

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Comments (6)

Rebecca Starr's picture Rebecca Starr replied on

Beautiful post and so well said. Coincidence or not, I have that same prayer hanging on a mirror in my bedroom, that mirror was my grandmas and every time I read it, I know that's what she would want of me. People will never see our disability or nearly invisible disabities. We sometimes just have to learn to deal and Sometimes we need to take a stand. :)

The Unaffected One's picture The Unaffected One replied on

Thank you Rebecca! I love that prayer. It provides such a simple, practical way to think through almost any difficult situation. Words to live by! When my grandmother moved into residential care, the plaque with it that hung on her kitchen wall was the first thing I asked if I might have as she off loaded her possessions. I think of her every day when I see it and I try (with varying success!) to take those words on board. Most "mountains" do truly become more like "mole hills" once you whittle them down to the things that are actually within our sphere of influence, I find!

Samuel Walsh's picture Samuel Walsh replied on

Very moving post TUA, aligning with your name perfectly. Yet another case of someone assuming you are unaffected by illness. I wonder if there's a ranking of conditions out there to help us on our way? :) I found myself in a bit of Twitter fued last week with someone complaining that they'd found a vaccine for Ebola, but they should've found one for cancer before moving on to a more 'recent' condition. I was dumbfounded as, in my view, any cure or vaccine for any illness at all is fantastic. Rebecca's right though- it's very much a 'pick your battles' situation. I still feel uneasy using the disabled toilet when there's a long queue but my bladder can't wait. I have my little MS 'identity card' but I dread the day someone calls me out on my entitlement to use the disabled toilets because I don't 'look' disabled. Looking forward to your next post.

The Unaffected One's picture The Unaffected One replied on

Thanks Sam! I suspect your approach to using the disabled loo is possibly a bit like my approach to using the disabled seat on public transport. If someone who obviously can't use the "normal" loo arrives (such as someone in a wheelchair) you'd allow them to go first if you possibly could - just as I would stand up for someone who clearly cannot stand safely, even if that would make my journey really uncomfortable. When it comes to "triaging" need, we both are justified in using the service that is there for those with special needs, but there may be others whose need is greater. I hope you would feel OK to pull out your MS identity card in such a situation and go to the front of the queue and ask if you might go next please, as you are not able to wait. That's the hard part, I find. Needing something, but only being able to get it by "outing" oneself in public. Thanks for your nice feedback!