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.
Monday, 28 September 2015
Friday, 11 September 2015
Thursday, 10 September 2015
Marriage in the context of 'calling'
Recently, I've been thinking a lot about the purpose of marriage.
New Zealand has recently allowed marriage between same-sex couples. This has led to the national body of my Christian denomination, the Baptist Union, to establish a working party to determine whether or not Baptist pastors should be permitted to perform such marriages. Our church has also been running a sermon series on relationships recently, with last Sunday's sermon being on marriage.
The debate I've heard has mainly centred on who Christians/churches believe should be permitted to marry. However, a blog post by Tim Bulkeley made me think about the broader question of 'what is marriage for'.
Tim is an Old Testament theologian and former lecturer at Carey College, the institution that trains most Kiwi Baptist pastors. His blog post explores his concern that we 'lack a theology of marriage and sex' and thus fall back to tradition when questions (such as the current ones on gay marriage) arise.
I don't feel equipped to contribute much to such a theology, but it's got me thinking. I've decided that our current 'Christian' concept of marriage is deeply influenced by two strong threads we've adopted from our surrounding culture.
Firstly, I believe that the dominant Pakeha Kiwi culture is strongly hedonistic: many people live by 'if it feels good, do it'. We've adopted this value in our concept of marriage: the purpose of marriage is seen as providing the various pleasures of marriage. Whilst I'm sure marriage has always been enjoyable for many (and sex is certainly designed that way!) other cultures and eras haven't always seen this as its primary purpose: the focus has instead been on things like procreation or family advancement.
God desires good things for his children, so I'm sure that he desires people to enjoy being married (and I know that I do), but the primary goal of Christian life isn't having fun. It's things like worshipping/enjoying God, getting to know him better, increasing the prevalence of his way of living (his 'Kingdom') in the world and so on. So shouldn't the primary purpose of Christian marriage have something to do with those things?
Secondly, I see the dominant Pakeha Kiwi culture as deeply individualistic. My school's motto was even Individuality with Responsibility. I see this value in our common concept of marriage, too. The small unit of a married couple, along with any children that may come, is encouraged to value itself very highly. We seek what is best for ourselves, our spouse and our children and only then are willing to look beyond that unit to what is good for those around us.
And yet God calls us to love our neighbour as ourselves, so is it right to privilege the well-being of our spouse and children over that of other people?
I have come to see this as one of the great temptations of parenthood: to provide the best for your own children and so unwittingly hurt other children or people you simply haven't noticed. Just one example. It's back-to-school season in the Northern Hemisphere and a Canadian blogging friend was reflecting how it hurts her to see people spend thousands on their own kids at this time when so many other children are in dire need.
These two strands in our conception of marriage (hedonism and individualism) are probably at the root of of the Western world's astonishing divorce rate, from which the church has been only somewhat protected). But they also lead, in my opinion, to one of the greatest temptations to sin that marriage presents: an over-inflated desire to protect those you love.
You see, in my experience, the life that God calls us to is not 'safe'. God calls all Christians to worship him and to work with him to advance his Kingdom on Earth. That can seriously get in the way of enjoying time with your spouse and family and showering them with the best of everything that is accessible to you!
But, if marriage isn't about enjoying its pleasures and seeking the best for yourself and your immediate family, what is it about?
Tertiary Students Christian Fellowship (of which Martin and I were a part whilst at university) has recently held its annual student leaders conference, Summit. The plenary talks from the conference are up on Youtube. I was deeply struck by the fourth talk by John Stackhouse on 'Why God didn't make you more beautiful than you are'.
In it, he spoke about how we each have a calling from God, and God will give us what we need for that calling. Our relationships, amongst other things, will be guided by that calling.
It occurred to me that, for many callings, being married is helpful; for others it is not.
For most Christians (although, it seems, not for us), a significant part of their calling is bearing and raising children. This is certainly most easily done in the context of marriage. And a significant calling to hospitality, for example, is quite likely to go with a calling to marriage.
For me, being married has enabled me to fulfil my calling to reflect on life and faith and to encourage and mentor other women in following Christ. Without significant support, I can't even take care of my basic needs. Through marriage to a man who sees supporting me as a significant part of his own calling, I've been able to fulfil mine.
However, for some callings, marriage is distinctly unhelpful. If your calling involves a highly peripatetic lifestyle (as was the case for the apostle Paul), that'll be easier to fulfil without a spouse and kids in tow. If your calling is primarily to intercession, singleness again seems an advantage. In common with others, I've found it's easier to find time to pray without a spouse around: I guess that's why monks and nuns are traditionally celibate :-)
So, alongside speaking in church about the joys of marriage (and the importance of protecting it by avoiding pornography etc.), I'd like us to speak about the work God calls us to, and about how some kinds of work are easier to carry out in the context of marriage and others in the context of singleness.
That framing returns the emphasis to the issues at the centre of Christian living and, as a bonus, doesn't exclude single people the way so much of discussion of Christian marriage tends to do :-)
New Zealand has recently allowed marriage between same-sex couples. This has led to the national body of my Christian denomination, the Baptist Union, to establish a working party to determine whether or not Baptist pastors should be permitted to perform such marriages. Our church has also been running a sermon series on relationships recently, with last Sunday's sermon being on marriage.
The debate I've heard has mainly centred on who Christians/churches believe should be permitted to marry. However, a blog post by Tim Bulkeley made me think about the broader question of 'what is marriage for'.
Tim is an Old Testament theologian and former lecturer at Carey College, the institution that trains most Kiwi Baptist pastors. His blog post explores his concern that we 'lack a theology of marriage and sex' and thus fall back to tradition when questions (such as the current ones on gay marriage) arise.
I don't feel equipped to contribute much to such a theology, but it's got me thinking. I've decided that our current 'Christian' concept of marriage is deeply influenced by two strong threads we've adopted from our surrounding culture.
Firstly, I believe that the dominant Pakeha Kiwi culture is strongly hedonistic: many people live by 'if it feels good, do it'. We've adopted this value in our concept of marriage: the purpose of marriage is seen as providing the various pleasures of marriage. Whilst I'm sure marriage has always been enjoyable for many (and sex is certainly designed that way!) other cultures and eras haven't always seen this as its primary purpose: the focus has instead been on things like procreation or family advancement.
God desires good things for his children, so I'm sure that he desires people to enjoy being married (and I know that I do), but the primary goal of Christian life isn't having fun. It's things like worshipping/enjoying God, getting to know him better, increasing the prevalence of his way of living (his 'Kingdom') in the world and so on. So shouldn't the primary purpose of Christian marriage have something to do with those things?
Secondly, I see the dominant Pakeha Kiwi culture as deeply individualistic. My school's motto was even Individuality with Responsibility. I see this value in our common concept of marriage, too. The small unit of a married couple, along with any children that may come, is encouraged to value itself very highly. We seek what is best for ourselves, our spouse and our children and only then are willing to look beyond that unit to what is good for those around us.
And yet God calls us to love our neighbour as ourselves, so is it right to privilege the well-being of our spouse and children over that of other people?
I have come to see this as one of the great temptations of parenthood: to provide the best for your own children and so unwittingly hurt other children or people you simply haven't noticed. Just one example. It's back-to-school season in the Northern Hemisphere and a Canadian blogging friend was reflecting how it hurts her to see people spend thousands on their own kids at this time when so many other children are in dire need.
These two strands in our conception of marriage (hedonism and individualism) are probably at the root of of the Western world's astonishing divorce rate, from which the church has been only somewhat protected). But they also lead, in my opinion, to one of the greatest temptations to sin that marriage presents: an over-inflated desire to protect those you love.
You see, in my experience, the life that God calls us to is not 'safe'. God calls all Christians to worship him and to work with him to advance his Kingdom on Earth. That can seriously get in the way of enjoying time with your spouse and family and showering them with the best of everything that is accessible to you!
But, if marriage isn't about enjoying its pleasures and seeking the best for yourself and your immediate family, what is it about?
Tertiary Students Christian Fellowship (of which Martin and I were a part whilst at university) has recently held its annual student leaders conference, Summit. The plenary talks from the conference are up on Youtube. I was deeply struck by the fourth talk by John Stackhouse on 'Why God didn't make you more beautiful than you are'.
In it, he spoke about how we each have a calling from God, and God will give us what we need for that calling. Our relationships, amongst other things, will be guided by that calling.
It occurred to me that, for many callings, being married is helpful; for others it is not.
For most Christians (although, it seems, not for us), a significant part of their calling is bearing and raising children. This is certainly most easily done in the context of marriage. And a significant calling to hospitality, for example, is quite likely to go with a calling to marriage.
For me, being married has enabled me to fulfil my calling to reflect on life and faith and to encourage and mentor other women in following Christ. Without significant support, I can't even take care of my basic needs. Through marriage to a man who sees supporting me as a significant part of his own calling, I've been able to fulfil mine.
However, for some callings, marriage is distinctly unhelpful. If your calling involves a highly peripatetic lifestyle (as was the case for the apostle Paul), that'll be easier to fulfil without a spouse and kids in tow. If your calling is primarily to intercession, singleness again seems an advantage. In common with others, I've found it's easier to find time to pray without a spouse around: I guess that's why monks and nuns are traditionally celibate :-)
So, alongside speaking in church about the joys of marriage (and the importance of protecting it by avoiding pornography etc.), I'd like us to speak about the work God calls us to, and about how some kinds of work are easier to carry out in the context of marriage and others in the context of singleness.
That framing returns the emphasis to the issues at the centre of Christian living and, as a bonus, doesn't exclude single people the way so much of discussion of Christian marriage tends to do :-)
PS I've really appreciated all of Prof. Stackhouse's talks from TSCF's Summit. If you'd like to check them out yourself, here are links to talks 1, 2 and 3. Prof. Stackhouse is a systematic theologian and church historian who has recently retired from Regent College and he was one of Martin's favourite lecturers during his studies there.
Sunday, 6 September 2015
Supporting refugees ourselves
There's been a lot of calls recently for New Zealand to increase its refugee quota in response to the crisis in Syria.
I'm all for that, but I can understand the government getting antsy about the additional cost. But what if we took on that cost ourselves?
In Canada, people can sponsor extra refugees in addition to the quota. Refugees coming in this way don't have access to state benefits or housing for the first year: the sponsor(s) have to house them and pay their living expenses for that time. Presumably the assumption is, after they've been around for a year, chances are they'll be in a fit state to provide for themselves and so will never have needed state assistance.
Someone has started a petition calling for a similar thing to be instituted here. You can sign it here.
I think it's a really good idea. I'm pretty sure my church, which has around 80 adult members, could pay the rent on a three-bedroom unit for a year, and could probably stump up $350 per week for living costs (which is what the government gives cash-in-hand for 'job-seeker support' for a family of 4) as well. We could support an extra family of four, in addition to the 750 people the government supports.
I don't know what happens in Canada for health care or education for such people - if we had to pay international student fees for the kids and the full cost of any health care then I'm not sure we could manage it. But if those were covered I think we could, and I think lots of other groups of people could, too!
If the idea appeals to you, too, then add your name to those calling for this to be possible.
I'm all for that, but I can understand the government getting antsy about the additional cost. But what if we took on that cost ourselves?
In Canada, people can sponsor extra refugees in addition to the quota. Refugees coming in this way don't have access to state benefits or housing for the first year: the sponsor(s) have to house them and pay their living expenses for that time. Presumably the assumption is, after they've been around for a year, chances are they'll be in a fit state to provide for themselves and so will never have needed state assistance.
Someone has started a petition calling for a similar thing to be instituted here. You can sign it here.
I think it's a really good idea. I'm pretty sure my church, which has around 80 adult members, could pay the rent on a three-bedroom unit for a year, and could probably stump up $350 per week for living costs (which is what the government gives cash-in-hand for 'job-seeker support' for a family of 4) as well. We could support an extra family of four, in addition to the 750 people the government supports.
I don't know what happens in Canada for health care or education for such people - if we had to pay international student fees for the kids and the full cost of any health care then I'm not sure we could manage it. But if those were covered I think we could, and I think lots of other groups of people could, too!
If the idea appeals to you, too, then add your name to those calling for this to be possible.
Thursday, 3 September 2015
Parliamentary inquiry into assisted dying
A couple of days ago on Radio New Zealand National I heard this interview with Simon O'Connor. He's chairing a Parliamentary Select Committee which is canvassing public attitudes on medically assisted dying in the event of a terminal illness or irreversible condition which makes life unbearable.
If you'd like your personal attitude to be included in the mix, you can make an online submission here. Submissions are open until February 1st but, if you don't want to end up leaving it until it's too late, you might like to make a submission soon :-) Also, they're hearing oral submissions as they go along, so if you want to make such a submission, you shouldn't have to wait too long for that after you put the written one in.
If you'd like your personal attitude to be included in the mix, you can make an online submission here. Submissions are open until February 1st but, if you don't want to end up leaving it until it's too late, you might like to make a submission soon :-) Also, they're hearing oral submissions as they go along, so if you want to make such a submission, you shouldn't have to wait too long for that after you put the written one in.
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