The last week fortnight has been replete with questions: will I ever get a transplant? Will it work? Does being “top of the list” actually mean anything? How am I going to survive the coming months? How am I going to survive the coming days? The coming hours? Will I feel hopeful or happy again? Will any man ever want to be with me? Where did I put my keys? Is Tom Daley gay? Answers have not been forthcoming, but that is not unusual in the course of a disease that is characterised by its uncertainty and vagaries. No time frames are given, no solutions, just a gaping chasm of time and the gentle shrugging of shoulders. This whole illness is one big question.
Over the last five years, the goal posts have shifted constantly and each time I have dealt with that by clinging onto to the notion that one day, someday, I shall have a transplant. There is no guarantee it will be successful but I find it is best not to dwell; instead, you focus on the hope the transplant offers. It is the hope, not the operation itself, which enables you to get through the day. When my consultant breezily mentioned that I only have a 10% chance of receiving a kidney from The List he snatched my hope away from me - just like the time my older brother grabbed my favourite troll (he had rollerskates!) and cut off all his hair. It seemed unusually cruel. My doctor scalped my troll and it sent me crashing down, way down, to depths where dark thoughts were as disturbing as they were calculated.
Without hope, we have nothing. We need hope in order to get up in the morning. When circumstances are bad and there is little about which to be happy, there is still hope that things will change and get better. It is why we play the lottery despite abysmal odds of winning, why we continue to go to the gym even though Jessica Ennis Abs are beyond our reach. But for hope to exist it must be seeded in reality: one cannot hope blindly, you must be able to conceive of how the situation could improve even if such an idea seems outlandish and impossible. A 10% chance of transplant offers hope, but not enough of it for me; it is not tangible, and I cannot get a grasp on it.
So the real question is: what now? The shock is gradually receding and I have to start thinking in practical terms. I shall need to plumb my emergency reserves for this – energy, strength and pragmatism are in short supply at the time I need them most. God clearly hates me. But screw him; I have great friends and family, and they have all been very supportive as I talk tentatively about the possibility of home haemo. The focus is no longer on life after transplant, or even preparation for it, but how to make life more bearable in the absence of a donor being found. It is the most terrifying prospect I have ever faced but the only way to navigate the storm is to sail straight into it and pray we make it out the other side. I am hopeful that, at least, there is another side to all this…I just don’t know when I am ever going to get there.
Over the last five years, the goal posts have shifted constantly and each time I have dealt with that by clinging onto to the notion that one day, someday, I shall have a transplant. There is no guarantee it will be successful but I find it is best not to dwell; instead, you focus on the hope the transplant offers. It is the hope, not the operation itself, which enables you to get through the day. When my consultant breezily mentioned that I only have a 10% chance of receiving a kidney from The List he snatched my hope away from me - just like the time my older brother grabbed my favourite troll (he had rollerskates!) and cut off all his hair. It seemed unusually cruel. My doctor scalped my troll and it sent me crashing down, way down, to depths where dark thoughts were as disturbing as they were calculated.
Without hope, we have nothing. We need hope in order to get up in the morning. When circumstances are bad and there is little about which to be happy, there is still hope that things will change and get better. It is why we play the lottery despite abysmal odds of winning, why we continue to go to the gym even though Jessica Ennis Abs are beyond our reach. But for hope to exist it must be seeded in reality: one cannot hope blindly, you must be able to conceive of how the situation could improve even if such an idea seems outlandish and impossible. A 10% chance of transplant offers hope, but not enough of it for me; it is not tangible, and I cannot get a grasp on it.
So the real question is: what now? The shock is gradually receding and I have to start thinking in practical terms. I shall need to plumb my emergency reserves for this – energy, strength and pragmatism are in short supply at the time I need them most. God clearly hates me. But screw him; I have great friends and family, and they have all been very supportive as I talk tentatively about the possibility of home haemo. The focus is no longer on life after transplant, or even preparation for it, but how to make life more bearable in the absence of a donor being found. It is the most terrifying prospect I have ever faced but the only way to navigate the storm is to sail straight into it and pray we make it out the other side. I am hopeful that, at least, there is another side to all this…I just don’t know when I am ever going to get there.
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