The other day we drove to my parents' place (about 25 minutes across town) to stay with my parents for a week over my birthday. As we went along the motorway, I became more and more sad. Seeing people briskly going about their business, seeing how expansive the world was, confronted me and filled me with sadness. I can't interact with that big world: it's too fast and too overwhelming to me. But once upon a time I was part of it. Mostly, I manage to kind of forget that it exists. Seeing it yesterday (and perhaps seeing it when I'm run down, dealing with a cold and perforated eardrum) somehow made me have to face that it's still there but it's no longer something I can be part of.
I think I mostly manage to 'pass' as normal. I've constructed my life such that, when people see me, I have enough energy to interact with them. I think few people realise how little energy I have. I've filled my life with fun things and useful work - so I guess it takes a bit of looking to notice how small my life is, and how little I actually accomplish.
I don't want to belittle what I do. I'm actually quite proud of how well we manage my illness - and deeply grateful to God for the grace he's given me to do that, and to the many people who help make it possible. But that doesn't mean there aren't deep losses for which I sometimes profoundly grieve.
By far the greatest of these is children. Perhaps we never could have had biological children anyway: I think one couple in six can't conceive without medical intervention, and a sizeable proportion of those can't conceive at all. But we, even though we long for children, have put considerable effort into preventing conception. My body almost certainly couldn't carry a child to term. Even if I did manage to give birth to a viable child, that child would largely be cared for by others (after all, we can't even care for me without Martin working reduced hours) and that hardly seems fair to that child.
Now we will almost certainly never have biological children. My specialist has told me that, should I get well enough for us to think about trying for a baby, we should wait six months to make sure the improvement is reasonably stable before starting. I turn 39 tomorrow. So that means, if I miraculously recovered tomorrow and we instantly conceived once we started trying, I would give birth at the age of 40 years and 3 months. That's pretty old, and comes with a lot of risks. If I did get better soon, I think it's unlikely we'd go down that route. Adoption, though, is something I think it's likely we'd consider.
There are so many other losses, too.
One big one is human contact. I love being with people, but I can handle only brief and infrequent visits these days. I never ever see most my friends these days, and there's only a rare few I see more than once or twice a year. I never go to church or concerts or the theatre or other places where there are lots of people around as they're too bright and noisy and have unpredictable things going on.
I miss understanding things. I know I still pass as intelligent (mostly because people only see me in controlled environments) and, underneath, I still am. But my brain works so slowly and I miss so much! Whenever I'm telling Martin about a story or radio programme I've enjoyed, at some point I'll inevitably say "I didn't get this bit" or "I missed how that worked". I wish I could follow all of what was going on - especially in live conversations. I wish Martin didn't have to explain so many things to me after the fact. Even more I wish that I had the strength to engage with people on difficult issues, as I feel I'd have a lot to give there.
I've lost much of my privacy and that illusion of independence so dear to us Westeners. I can't do my own shopping, cook my own food or take myself to appointments. In the evenings, I can't even go to the toilet or change into my pyjamas without assistance. I'm grateful for the assistance I get, but sometimes I wish that half the women in our church hadn't seen me naked!
I'm sad I don't get to do big things that feel significant. Everything I do has to be broken down into small steps, and for really big things that's just not practical.
I miss being spontaneous. From my leisure activities to what I eat, everything is planned in advance and much follows strict formulas. I appreciate these, as they enable me to actually have leisure activities, and the 'rules' by which I live keep me in much better health than I would be otherwise. But they grate all the same. So often I'd love to be able to keep doing something I was enjoying rather than go rest because time's up. I'd love to be able to talk with people late into the night - or even into the afternoon after lunch ;-) And I'd love to be able to just go for a bike ride or a walk to clear my head when being so cooped up was getting to me :-(
I miss being alone outside. I miss seeing night-time. I'm sad that I rarely see a big sky (not a big sky like you see in the country, although that would be nice - but just one like I saw from the motorway yesterday, when I wasn't boxed in by houses). I miss gardening. I miss playing my violin, and often think that we really should sell it so someone else can enjoy it, but I can't quite bear giving up on it yet.
I wish that I, like Martin, could have a quarterly respite from dealing with all of this!!
Don't get me wrong. My life is good. I'm grateful for that (and very protective of the routines and patterns that make that possible!). But everyone has things they're sad about and these are some of mine. I don't want you to pity me. I'm grateful if you enjoy my company and celebrate what I do achieve; I love it when you notice how God is shaping me through this and are excited by what He's teaching me.
But I do also want you to know that it's hard. I live with an illness which has a high suicide rate and I'm more severely affected than most. So give glory to God that I live a good life despite the odds, but know also that sometimes it's hard and sometimes I can get blindsided by something as simple as seeing the great big world outside.
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