There is something happening that is not terribly cool, considering that the café staff here know me so well. I find myself in tears and hoping that the laptop is acting as a good screening device. No pun intended.
I’ve been taking a look at Martin Sibley’s blog, recommended by a good friend. Despite being wheelchair bound due to SMA (spinal muscular atrophy) and requiring carers to help with a lot of his daily tasks, Martin has a full and action packed life. He has acted as trustee for the Jennifer Trust (the charity that represents others with his disability), is a published author, regular key note speaker at conferences; he travels the world, has flown a plane, runs businesses around his blogging and manages accounts on twitter, Instagram and vlogs. WTF!
There are similar blogs by people with both visible impairments due to disability, illness or life changing accidents or written by people like me with hidden stuff to deal with, like hypermobility syndrome, chronic pain, fibromyalgia & chronic fatigue syndrome. They are also doing a great job. Interestingly, the support necessary for most of the latter to achieve half as much as Martin is rather conspicuous by its absence. And I’m fairly sure that Martin would agree.
My life suddenly feels very small, which is one reason for the leaking face. Trying to find a niche for myself again (or find a job, in common language) has been thwarted repeatedly by a lack of energy, unpredictable pain levels, poor concentration and a tendency to overload very easily. And most of all, by having something that other people can’t see. Is it really so surprising that they can’t take it too seriously? And that’s whether I tell them about it or not. There is, evidently, a rule that says: a person cannot be intelligent /articulate and ill at the same time. Similarly another rule seems to say that a person cannot have severe problems walking unless they are seen using walking sticks, crutches, a wheelchair or a mobility scooter.
Okay, I ‘get’ how odd it must be, watching someone who tends to be ‘away with the fairies’ even in public, wrapping herself into weird contortions in the manner of some crazy yogi. It’s a relentless task and exhausting having to manage this stuff. And I’m a dab hand at it all nowadays, with the odd blip, when I cope as well as a paper hat in a rainstorm.
But please stop thinking apparent misery is the same as depression. It just isn’t! Experience has taught me, rightly or wrongly, that there’s no point fighting the inevitable and sometimes wholly understandable misinterpretations of others. I’ve rarely managed to turn things around except when someone else has stuck up for me. And those moments are rare as hens’ teeth and precious beyond belief.
Surviving something that affects me so seriously has left me with an overwhelming sense of humility and gratitude to be alive which rarely goes away. There is no room for ‘poor me’ diatribes. I’m a survivor who finds life just TOO precious for regret and recriminations. And finding beauty and excitement in this much simpler life of mine just means that I’ve had to get better at using a microscope!
Swapping mainstream guys for amazing friends who just happen to have challenges too and there’s no big deal anymore. …. Except when I’m reminded of how often I’ve failed. Like today. The last 17 years feels like a sequence of fuck-ups, poor decision making and humiliations, with shame following closely in their wake. Oh, if I could turn back time and tell myself how incredible I was to have tried AT ALL!
Or baked cakes. Lots and lots of them. It would have felt rather more productive.
