The worst is …

A dear friend of mine has a saying that comes from experience bringing up a long row of children and grandchildren. It works just as fine with me, with the added bonus of making me smile. When I am really upset, he listens to my complaints and then says, “What is the worst part?”

I find it brilliant, because it makes me stop rambling – and start to think. And when asked to pick one single thing, that thing often sounds futile. Which is of course the point. And if the worst part is still horrible, a stepwise approach is often a good advice anyway.

Another aspect of comparing bad things, is the question people outside of the disability community keep coming back to for some reason: What is the worst – becoming blind, deaf or motor impaired? I don’t know where the underlying idea comes from, or what difference it would make (you rarely get to choose), but I still get this question often enough to make me puzzled. My 10 cents worth of observation is that people seem to fear blindness the most, I assume it has something to do with losing control. None of the people I have had this odd conversation with have considered the isolation acquired deafness often end up with. Very few have thought about how many places you still cannot visit in a wheelchair, despite legislation and innovation.

But one thing I know for sure. People who become permanently ill or acquire a disability, who all of a sudden find themselves being part of ”the world’s biggest minority” – they all essentially say the same: The worst part with this new life situation is not the things I cannot do anymore, accepting that I need to ask for help, the everyday struggle or even the pain. It’s losing my identity, the way friends and colleagues perceive me, and ultimately – that I have become lonely.

Most people are genuinely caring towards family, friends, colleagues, neighbours and many others as well. When something bad happens, they call, drop by, support, send flowers etc. That’s how we behave as humans. If the bad thing happening is temporary, this is nice and often appreciated. But when the situation doesn’t improve, when the person isn’t ”coming back” to where they were before, or even becomes worse … very few people keep up the support.

I am not blaming anyone, most of us react this way. Life goes on, we all have our own troubles, and there is only so much sadness and being Mother Theresa any of us can handle. Empathy requires energy, and continuous empathy doesn’t seem to be the part of our default DNA.

At a recent funeral, I couldn’t stop thinking that if the 50 people who now paid their respects had visited once a year, the deceased (who got almost no visitors except for the closest family) would have seen someone every week. Thinking of the difference that would have made for her …

I have seen and heard the same story too many times, and it breaks my heart. In what is arguable the toughest period of any person’s life, when you are extremely dependent on smiles, hugs and love just to cope – far too many people feel totally deserted.

The worst is being left alone.