Hospital is Hell

Hospital is hell - at least for those of us stuck outside.  I'm not qualified to report what kind of hell it might be for those stuck inside.

Hell because you have no information, no understanding of what is going on, and you no longer have control.  You phone, but do not know what to ask, or what to make of their answers.  What you want to ask is whether your child is coping, and is getting better.  But the staff on the other end of the phone don't know her that well - all they can tell you is whether she is complying with her medication and if there have been any "incidents".  The old language has crept back into these exchanges in repeated references to "safety".

There is no way of being involved in decisions about her while she is in hospital, even though you ask repeatedly.  No one can tell you whether they will let her out for home visits this weekend, and everyone is too busy to talk to you about it.  No one will tell you how they will make their decision, but they bring out that word "safety" so many times that you can't help but fear the worst. You cannot make plans, you cannot get on and do something else to distract yourself from your situation because, after all, she may come home and will then need your constant supervision.

You visit her, and feel that they have taken away your child and replaced her with somebody else - somebody who looks just like her but is not her.  This is someone who shuts you out; someone who has to be accompanied and observed continuously by a member of staff, even when you ask to be alone with her; someone who gleefully reports that she has outwitted staff and self-harmed repeatedly.  In the hospital world, in the world of teenagers who have no other sense of control over their lives, these games are how you survive, how you assert your fragile identity against the omnipresent adult supervision.

This is not like her - it is not the Julie I lived with through the long winter months when we were alone day after day.  That Julie was fragile, and often broken, but she was honest and kind.  You could understand how she worked, in her strange complicated back-to-front way, even if you couldn't fix her.  This hospital Julie is the harsh, bleak, angry Julie I had forgotten about from last year. This is the dull painful reality of hospitalization: the reason why I fought to keep her out of hospital and at home.

This weekend we were supposed to be going on a course to learn about Buddhism. It was something Julie had wanted to do so much when we booked it months ago.  She feels a need for something spiritual in her life.  It seemed a good idea to explore it with her, because who am I to say what might help her?  I keep an open mind.  I am taken aback when a staff nurse tells me it might not be a good idea because "she might get some funny ideas about reincarnation and stuff".  I am not a Buddhist, but neither is she, and her comment sounds as if it is rooted in ignorance, not knowledge.  How does this opinion colour any decisions she makes about allowing Julie to leave the hospital this weekend to attend the course?

The paperwork starts arriving in the post: weekly reviews.  In place of my living breathing daughter, I am given medical descriptions of her behaviour written by strangers.  This week's summary begins "Julie is a sixteen-year-old Caucasian lady...".  I gave them my teenage daughter and they give me back a Caucasian lady.  (It's probably the nearest she's going to get to being a lady at this rate.)