Imagine life with a pause button. The story stuck in one place, just waiting to restart.
I think this is the best way I can describe the feeling of waiting for a transplant. Waiting for the phone to ring, to be told there is a donor. To be told it’s time to press play again.
It’s this odd stage where you are living in limbo somewhere between just existing and actually living. Probably too ill to do a lot of what ‘normal life’ entails, but possibly not sick enough to just lie in bed all day. Trying to find a balance between making the most of whatever you can do, whilst not tiring your body and mind out more than they already are.
Plans don’t get made for anything other than the day you are living. Or if you do – always choose the option of free cancellation! Always stay near a phone, phone never on silent and don’t go anywhere that’s more than three hours away from your hospital. Keep a bag packed and ready to go at the drop of a hat. Always have a designated driver on stand by, never more than one small glass of wine for them.
Every time the phone rings it produces a mixed response of nerves, anticipation and possible excitement. Is this the call? Will it happen today?
The reality of the situation hits you every so often…you are waiting for someone else’s story to end, so that yours can continue. Knowing they have found a donor, ultimately means that someone else has died. Their generosity means that you can hit the play button on your own life again.
It’s like living in some slightly strange limbo land. It’s not something that is easy to describe unless you have experienced it I think. There are all these things you want to be doing, but can’t until you get your transplant.
Life is a series of ‘After I’ve had my transplant, I really want to…’ ‘after I’ve had my transplant, I’m going to…’ ‘once I’ve recovered, I can…’.
Plans and goals are made, but that so often depend on the fact that you need someone else’s organ.
So then, one day the phone rings and there is a donor. Initial joy – this is it, we can un-pause. Then nerves, I mean after all a transplant is a pretty big deal and not an easy thing to go through. All at the same time as this, mixed emotions – knowing that a family has lost their loved one. Someone’s friend, someone’s sister, brother, father, mother, cousin, daughter, son. Someone’s favourite human. This person has allowed you to live.
You make your way to the hospital, with all these thoughts going round your head, all the time thinking of what you’ll finally be able to do once you have recovered.
Life is not on pause anymore. You have come out of limbo land.
It’s time to press play.
(First posted 26th December 2018)