It’s not the Plague!

A few nights ago we had a big function to go to. I have to confess that I wasn’t really looking forward to it (there were about 400 people there and we were hosting, so there would be a lot of noise, a ton of people, and loads and loads of smiling, nodding, air kisses and hugs, mostly saying “pardon me” because we can’t actually hear what anyone says because of the loud music (out of my control so don’t blame me!) and a hoarse and very sore voice afterwards from having to shout so loud to be heard in any conversation! None of those are my favourite things, but that was OK, it was a great bunch of people and there were many who I was looking forward to seeing and hopefully having a bit of a catch up on the rare quieter moments. The dread came mostly from the fact that most of these people would be seeing me with my crutch for the first time.

We had a plan of action. Number one was take the crutch but not the wheelchair. The wheelchair would attract too much attention and as most of the night is sitting anyway we didn’t feel that it would be needed, however if we went with just the crutch then we would need to be planful and proactive, and to make sure that we get to sit down quite soon after arriving. Normally there is standing around with drinks for the first hour or so and standing is a huge no no for me! With a crutch or even a strong and high handled shopping cart to lean on I can walk for an hour or more as long as there aren’t too many twists and turns, but standing puts all the weight on my LFI and hips and I can’t last more than ten minutes.

Number two was to have the party line ready. A small group of people already know what I have and so on, but even many people who know don’t really register that it is long term, permanent, disabling, etc. and so either they or their spouses come up to us and say “how is it going? I’m so sorry to hear about your ankle is it? Are you not better yet?”Β … and I often feel at a total loss for words. Not because I’m gobsmacked, but if we have told them what is happening and they still don’t get it, then what else do I say without spending the next half hour in details that they probably don’t want to know anyway? No one wants to hear the LOOONG version or know all the details and quite frankly I don’t need the whole world to know either, but because of the crutch people assume and ask and are thoughtful and caring, and they want to know if I am ok! So we planned for the onslaught from all those who don’t know yet, which is the case every time we see a crowd of people that don’t see me every day, and just reminded ourselves of the short version and to be patient and loving πŸ™‚

So the plan was to arrive late (ish) so that we aren’t there for all of the standing around time, and as soon as possible find somewhere to sit and then people can come to us (which they usually do anyway). It seemed a very plausible plan and we had no reason to believe that any part of it would fail.

So off we headed and it was one of those rare occasions where everything was in our “favour”! We were ready early, all the lights were green getting there, and there was a parking spot right up near the door! Which meant that far from being late, we were early! Well, there are worse things to be than early, and we thought that maybe that would make it easier to find a chair and sit and then talk to people as they arrive. Well that worked too and as we mingled through to the sitting area we sat down on the edge of the seating area yet right next to the mingling area, and we chatted and said our hellos as we walked through the very small crowd, and then planted ourselves on the spot for the evening.

It felt slightly weird to be sitting while everyone else was standing, though Β we are getting used to that now, but the thing that struck us the strongest, was that people generally didn’t come anywhere near us! I am not for a moment saying that they SHOULD have come flocking, all I am saying is that for years they have! Many of these people work either directly or indirectly for my husband and at these functions they always come and say hello, bring their spouses to meet us and vice versa, ask about the children, wish us a Merry Christmas, and so we are used to being inundated. It is exhausting on so many levels but important and my husband has always been very proud of the effort that I put in, remembering people, asking them how they are and remembering details they shared the last time we saw each other, genuinely caring for them and following up, and he calls me his first lady. It is a small part of who I am but it is also an important one and as his wife I am happy that I can support him in this way.

It’s not as though we spoke to NO-ONE! We talked to a few people on our journey from the front door to the table, and of course there were those who sat at our table, and there were a VERY small group of old faithfuls who were wonderful and came over as usual. But they were VERY few and far between, and many people who I have spoken to at length over many dinners and functions in the past, and who know us well and know what is happening with me, made eye contact and smiled then turned away, or scuttled past on their way out for a smoke, or watched as we made our way to the loo or the desert table, but said nothing. Honestly, I felt like I had the plague or something!

At one point we got up and made our way through the crowd to congratulate as many of the people who had won awards throughout the evening as we could, and that was great, but we are used to setting off on such cross room journeys with a big breath and setting out hand in hand because we know it will take a long time to get there because of all the people along the way who will stop us to say hello. So again, we were shocked. Shocked that people stared, people looked, people sometimes even made eye contact for a second, …. but then their eyes would drop and they looked away. They moved out of the way, they turned their heads back to the people around them and carried on with their conversations. No one stopped us, no one held the eye contact, and no one said anything, and so in what felt like a strange “silent” bubble, we made our way across the room, found and congratulated the people we were looking for (who were great by the way, but they were the focus and we were there for them, so they could afford to just be normal), and then we would leave them to the others lining up to congratulate them and made our way back again.

My husband is a loved and popular guy. People talk to him in the corridors and at the coffee machine every day. When I am with him for functions, events or even at the office he is just as approachable and people still do this with me there, and say hello to me too… well they used to anyway. For decades this has been our norm. Not everyone loves me of course, and I am used to that. There are women who don’t like the boss’ wife no matter who she is, there are people who suck up to me because I am the boss’ wife, and their agenda is thinly veiled. But we make an effort to rise above those things (I won’t lie, they are annoying!), and there are other complicated group dynamics going on too. But for the most part, through all the places that we have lived, because I have always played an active part in my husband’s work world and I have been “married to the company” almost my entire adult life, I have enjoyed a level of genuine relationship with many of the people that he works with, at all kinds of levels.

I don’t do fake and never have, and being real is a very important part of who I am. Word gets around over the years through my surgeries, injuries, falls and other health battles, and the general work population people have always been great! Now suddenly I have a diagnosis and it appears that it scares people. When I first moved to crutches back in the first half of this year after I fell everyone was asking how I am, if I’m getting better etc… it all still felt very real and “normal”…

But now that I am STILL on crutches after so long, and I obviously can’t stand up for long when I am chatting, (and they haven’t even seen me in my wheelchair yet Heaven forbid!!) …it seems that they simply don’t know what to do … so they don’t do anything at all! I have had people say nothing and then write and say that they haven’t said anything to me yet because they only want to say it in person, …. and yet months down the track and they haven’t done that either yet!

I get that people are uncomfortable, but last night I was at a different dinner, and people kept apologising for asking stupid questions! I kept saying over and over: “there is no such this as stupid questions! I would WAAAAY rather this, that you come up to me, ask me anything you like, try toΒ understand, show care, etc, than smile briefly and turn away”. Last night was GOOD, and waaaay more real! they ask, we answer and then we move on to totally “normal”!

These kinds of things push people to their poles. Almost everyone we know has fitted into two very neat camps. There is the camp where people have been honest and open and (embarrassingly for us) some even cry, but they have been REAL, and they have very quickly found our new normal, and move with the flow as we continue to work out what normal is for us as well! There are those like this morning who asked us out for the afternoon but as we will need the wheelchair because there will be loads of walking, … without skipping a beat they made a plan (even if it didn’t work, they tried to!). Also in this camp are those who don’t know us well enough from their perspective to ask questions (although they are most welcome to), but still say hello, and in one way or another, treat me as though I am completely normal! You have no idea how special that is for someone with a disability!! To be treated as though nothing has changed, as though I am still the same me … because I AM still the same me!

Then there is the other camp: At one extreme there has been anger at my selfishness because I no longer have the energy to keep carrying them like I used to (and never should have), and others at that same extreme with the lame, thinly veiled excuses and fake offers that don’t eventuate! Then at the more “benign” end of this camp are the stares from a distance but doing exactly that: keeping a safe distance. Or scuttling past with a nod and half smile but not stopping to talk when for years they always had (I get that sometimes people genuinely have something more important to do, but when they do it half a dozen times in an evening, especially a social evening, and never stop to chat AT ALL, it ain’t subtle people!!!!). Or seeing me and “subtly” moving away, looking straight through me, or past me as if I am not there… the list is endless.

True colours are shining though and again it is shocking me who fits into which camp! And it doesn’t look so pretty for too many of them let me tell you!!

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5 thoughts on “It’s not the Plague!

  1. Dear Jen
    I understand you 100% as this was the exact reaction Peter and I received when we were dealing with Lesley’s problems with alcohol, drugs, police etc. etc. – I wanted to crawl into a hole and did distance myself from many people. I know yours is different because it involves so much of your personal and work-related life. You have carried a heavy load for too many years in keeping everyone around you and beyond happy – now it’s time for others to do the same in return. You are very special Jen, in God’s eyes and your family and friends’. Would love to be able to sit down together and have a heart to heart – maybe one day!!! A blessed Christmas season to all of you. With love Shirley

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  2. I’ve found the polar reactions a little embarrassing, but you’re right the heartfelt ones might be uncomfortable but they are at least real.
    EDS has kicked my arse this year and people’s horror at the great big changes has somewhat validated me being sad for my old life.

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    1. oh I hear you!! I don’t think that there is a “comfortable” response, and yes some are embarrassing, and I often find myself apologising to people and reassuring them a lot … but then we move on and it’s real and we have addressed the elephant in the room! They learn to then just say “how are you?” and mean it and I can answer that “Im fine thanks” or “not a great day today” and then we can move on …. its the ones who hide and stare and whisper that just keep getting more and more awkward and weird ! Im glad you too have found validation in this, and I’m sorry it sucks 😦 I wish it didn’t! …. there is no up side, it just sucks! xxx

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  3. Oh dear Jen, what an awful night to go through. When I started reading I assumed peoples fussing would have been the issue but was stunned as I read on. People are so weird and complex. I wonder if many of those people felt embarressed the next day by their reactions? So hard for you having to deal with the physical impact this has had on your world but it must be infinitely harder dealing with the emotional and social impact. Loads of love and hugs to you xxx

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    1. Thank you! I thought that the fussing would have been the biggest problem too and generally it is … I also wonder what people thought the next day, though I expect that they didn’t think at all about their response, and no doubt justified it and may be even think that they were being kind by keeping their distance… I’m not sure. But regardless of intent the impact is the same and it is damaging to the relationship no matter how small the connection is. I don’t hold grudges, but we all choose where we position ourselves in relation to others, and there were a small few who positioned themselves well and others who took a step back…

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