i’m still trying to get my head straight after yesterday.
my daughter returned to school, her first visit since January. even a week ago, i was unsure whether this was going to be possible. we arrived when the other children were in class, and she spent half an hour with her home tutor looking at an exhibition about Anne Frank in the school library. we’d spent time the day before looking at online resources from the Anne Frank House museum, to help place the school visit in her mind.
my daughter has also had the support of a new friend, who suffers from chronic abdominal pain too – a girl who has already faced up to the experience of returning to school. she was able to say to my daughter that, yes, it was tough, but it was fun too. what had once seemed impossible for her, was possible. she’d managed it, and so too could my daughter.
whilst my daughter visited the exhibition, i spoke with her Head of Year, and we made plans – loose, flexible plans, to try and accommodate her return. another visit to school next week, this time to include meeting her school friends.
then, from there, we went to the hospital to meet with two clinical psychologists.
my daughter met with a psychologist separately. they discussed all she has achieved and used that as a basis to set new goals – eating breakfast at the table every day (she will be allowed to lie down after five minutes if necessary); agreeing what she could do to dress herself, continuing to go on short walks.
in the room next door, we talked about the limits of the gastroenterology service, whose remit it is now clear extends no further than diagnosis. they will approve a referral to Great Ormond Street Hospital Pain Service Clinic. pharmacological decisions become the responsibility of our family GP. clinical psychology support/therapy remains with the hospital.
any remaining expectations we had of coordinated, joined-up care were absolutely dashed.
we spoke at length about pain behaviour – pain the bully; pain the piper that makes the whole family dance its tune.
what emerged from the discussion is the importance of not falling, unwittingly, into patterns of caring that reinforce dependency. it took a little while for the implications of what was being said to become clear. it’s very very difficult as a mother to step back, to step away from a child in pain. what crushes me at times is this absolute sense of being locked into a situation we cannot break out of. i know my daughter needs to do more for herself. the more she is able to do for herself, the more likely she will be able to cope. from that comes control, and the ability to push the pain further and further away from herself. it does not mean she will be pain free. it means the pain will no longer be in control of her.
well, at least that is what we were told. at times i felt as if i was being read to from a textbook. presented with an equation that always balances.
and yet there are limits. my daughter cannot get out of bed, she needs help standing up from sitting down. she cannot sit up from lying down in the bath. if she had a hoist, maybe she would be able to pull herself up. but where on earth do we get a hoist?
chronic, debiltating pain reminds me of the Ouroboros, the mythical creature locked in an endless cycle of consuming itself.
here is a striking modern interpretation:
i look at this image and it makes me think. i need to do all that i can to help my daughter bring her pain under control, but i need also to be sure that the care i provide does not perpetuate a cycle of dependency. the whole family, her friends, herself – all of us need to be part of breaking the seemingly endless cycle that chronic pain presents.
but i cannot stand by as my daughter struggles to get out of bed. there are limits. she is my daughter. i am her mother. the relationship is inevitably one of dependency too.