Having spent much of the last three years being either introspective or retrospective and sometimes a hybrid of the two ("What was I doing wrong last week?") I feel it is high time to start looking forward. I have developed a (not unjustified) phobia of making plans because the ones I do make never quite pan out as expected: my plan to graduate, get a job and live happily ever after, for instance, has been disrupted by the abrupt terminus of my kidney function. Once that had happened, my rigid dialysis regime meant that any plans that didn't revolve around an afternoon at the hospital were a dead end.
I resented it for a while - I felt it cruelly unfair that I couldn't arrange a holiday, but then I realised what an obnoxious dick I was and that not being able to get burnt and drunk over a week in Turkey is not exactly a violation of my human rights. In fact, the only significant impact my medical inertia has had on anything is my career. I tried working full time: it's not an option at this juncture, which leaves me with part-time options - not really conducive to climbing the career ladder.
Of late, however, I had an epiphany. The prospect of a transplant is becoming increasingly tangible with every day that passes and this is all the inspiration I need to break free of my dialysis induced torpor. I have accepted (grudgingly) that a career as a astronaut-hairdressing-writer is unlikely (though not impossible...) so settled accordingly on a more realistic path: having spent over a year working with children in various guises, I honed in on the bits I enjoy (the pastoral, communicative bits), the bits I don't (the disciplining bits) and deduced that working as a hospital-based play therapist would be ideal. The caveat, as I explained to Anna last week over a late night Wagamamas, is my shame at not having casting off the shackles of the medical sphere; by choosing a job in a hospital I am actively letting my illness define me. I worried that at my Class of 2004 reunion, I'll tell old acquaintances about my job, then hear them saying, "Well, of course, it was because she was ill herself..." when they don't know I'm in the toilet cubicle. I want to be more than my illness, I want to live my life in spite of it. I don't want to do the I-got-ill-and-now-its-my-cause thing. But simultaneously, I know I am uniquely placed to empathise with children when they are at the mercy of their own failing anatomies and I might be able to help them process their experience.
So, I devised one of my patented hair-brain, ill-conceived schemes that have worked so well for me in the past. I'd continue working at school (assuming they didn't fire me first) and in a year's time, I'd embark upon an NVQ Level 3 in Childcare as a pre-cursor to enrolling on a foundation course in Play Therapy; in the meantime, I'd pick up a waitressing/dog-walking/whatever job so that I could pay my rent and fit in some dialysis along the way. There's no way it could possibly go awry.
On Thursday it went totally awry. But, in a surprising turn of good fortune similar to when I won a mobile phone in a raffle - and I NEVER win those things - my plans have changed for the better. Thursday was inset training at school because Tower Hamlets was electing a mayor (obviously), which meant no kids at school and an extended coffee break with Songa and Fahmida before drawing a giant spider and heading home early. When I mentioned my plan to Songa, she told me she'd already completed her NVQ by working in the evenings, at her own pace and using her experience at school to help her pass the modules; I didn't need to wait a year, I could start straight away, keep working at school and be done in six months. Then I could get straight on with play therapy training and work as a play assistant instead of a waitress/dog-walker/whatever. In the course of our conversation, everything fell into place.
Ironically, these plans essentially rely on me NOT having a transplant. I will be euphoric to finally receive that call, but I can't ignore the fact it will be a very disruptive occurrence in what is gradually becoming my settled life. This is the real problem with trying to make plans whilst you are waiting for a transplant: anything realistic has to be based around dialysis, yet at the back of your mind is the knowledge - and the desire - that a transplant might come soon and open up a plethora of possibilities. So: is it better to make plans for after the transplant and wait? Or forge ahead now whilst remaining pragmatic? The latter, surely...after all, as bleak as it sounds, the transplant itself is no guarantee of a working kidney and a dialysis free life.
So that is my plan and I feel energised by it. By focusing on it, dialysis has faded into the background noise of life along with cleaning the kitchen and buying stamps. By looking ahead I also feel, correctly or not, that my time on dialysis may be coming to an end. Passing the eighteen month mark on The List, which also denotes the average waiting time, has been seminal for me; enough of this dialysis nonsense now, it is time to get on with living in the best way I can. It would the same if I had a child: I would be just as tired and just as anxious - a bit stickier, perhaps. A trip to Thailand may have to wait until a new kidney comes along, but for everything else, there's no time like the present.
I resented it for a while - I felt it cruelly unfair that I couldn't arrange a holiday, but then I realised what an obnoxious dick I was and that not being able to get burnt and drunk over a week in Turkey is not exactly a violation of my human rights. In fact, the only significant impact my medical inertia has had on anything is my career. I tried working full time: it's not an option at this juncture, which leaves me with part-time options - not really conducive to climbing the career ladder.
Of late, however, I had an epiphany. The prospect of a transplant is becoming increasingly tangible with every day that passes and this is all the inspiration I need to break free of my dialysis induced torpor. I have accepted (grudgingly) that a career as a astronaut-hairdressing-writer is unlikely (though not impossible...) so settled accordingly on a more realistic path: having spent over a year working with children in various guises, I honed in on the bits I enjoy (the pastoral, communicative bits), the bits I don't (the disciplining bits) and deduced that working as a hospital-based play therapist would be ideal. The caveat, as I explained to Anna last week over a late night Wagamamas, is my shame at not having casting off the shackles of the medical sphere; by choosing a job in a hospital I am actively letting my illness define me. I worried that at my Class of 2004 reunion, I'll tell old acquaintances about my job, then hear them saying, "Well, of course, it was because she was ill herself..." when they don't know I'm in the toilet cubicle. I want to be more than my illness, I want to live my life in spite of it. I don't want to do the I-got-ill-and-now-its-my-cause thing. But simultaneously, I know I am uniquely placed to empathise with children when they are at the mercy of their own failing anatomies and I might be able to help them process their experience.
So, I devised one of my patented hair-brain, ill-conceived schemes that have worked so well for me in the past. I'd continue working at school (assuming they didn't fire me first) and in a year's time, I'd embark upon an NVQ Level 3 in Childcare as a pre-cursor to enrolling on a foundation course in Play Therapy; in the meantime, I'd pick up a waitressing/dog-walking/whatever job so that I could pay my rent and fit in some dialysis along the way. There's no way it could possibly go awry.
On Thursday it went totally awry. But, in a surprising turn of good fortune similar to when I won a mobile phone in a raffle - and I NEVER win those things - my plans have changed for the better. Thursday was inset training at school because Tower Hamlets was electing a mayor (obviously), which meant no kids at school and an extended coffee break with Songa and Fahmida before drawing a giant spider and heading home early. When I mentioned my plan to Songa, she told me she'd already completed her NVQ by working in the evenings, at her own pace and using her experience at school to help her pass the modules; I didn't need to wait a year, I could start straight away, keep working at school and be done in six months. Then I could get straight on with play therapy training and work as a play assistant instead of a waitress/dog-walker/whatever. In the course of our conversation, everything fell into place.
Ironically, these plans essentially rely on me NOT having a transplant. I will be euphoric to finally receive that call, but I can't ignore the fact it will be a very disruptive occurrence in what is gradually becoming my settled life. This is the real problem with trying to make plans whilst you are waiting for a transplant: anything realistic has to be based around dialysis, yet at the back of your mind is the knowledge - and the desire - that a transplant might come soon and open up a plethora of possibilities. So: is it better to make plans for after the transplant and wait? Or forge ahead now whilst remaining pragmatic? The latter, surely...after all, as bleak as it sounds, the transplant itself is no guarantee of a working kidney and a dialysis free life.
So that is my plan and I feel energised by it. By focusing on it, dialysis has faded into the background noise of life along with cleaning the kitchen and buying stamps. By looking ahead I also feel, correctly or not, that my time on dialysis may be coming to an end. Passing the eighteen month mark on The List, which also denotes the average waiting time, has been seminal for me; enough of this dialysis nonsense now, it is time to get on with living in the best way I can. It would the same if I had a child: I would be just as tired and just as anxious - a bit stickier, perhaps. A trip to Thailand may have to wait until a new kidney comes along, but for everything else, there's no time like the present.
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