“How are you”, says my Doctors.
“How are you feeling” say my friends.
“How have you been” say my acquaintances………………….
I don’t know how to answer. I don’t know how to explain or analogise this state. I am still waiting for a liver transplant after four years. Those haven’t been wasted years because I’ve learned a lot about myself and I haven’t changed a lot, but I have a little. The fact is the liver transplant list here in Toronto is comprised of 6-700 individuals like myself with various factors leading to the eventual destruction of enough liver tissue to prevent any possibility of re-generation. The person to receive the next transplant (about 1 every 3 or 4 days) is close to death or heading there quickly and will not live without transplant. Others like me suffer imbalances in our metabolism that causes fluid retention and extreme fatigue.There is a separate structure (Living Donor) for those whose family or friends will donate half a liver in an elaborate but lifesaving surgery without the wait.
If I were to find you lined up in a bank or for a bus, and instead of being the usual ten minutes it was now two hours and you didn’t have options and ask you “how are you feeling?”, your answer may cover some of the myriad of thoughts that I have every given day. I am feeling at times frustrated, left out, lost, more appreciative of small things, less patient with people who are rude. I am not concerned with my standing in society or its trappings. I will always live in illness of some sort or another. I know you’ve heard of the people who recovered and went back to work and a normal life but inside the community we hear about the ones who don’t make it after five years and have many rejections.
I was recently in the transplant wing for some care regarding a bout of pneumonia and I met a young man in the “pantry” where we can heat up food, or get our own ice water while stretching our legs. He was yellow all over with jaundice and quite ill in appearance and weak, and told me he had received his second transplant and was rejecting at such a rate that they weren’t going to try again. He showed me the scars on top of the scars on his abdomen. They were helping him make arrangements for palliative care. He said to me “at least I won’t get in your way on the list now” and we parted. People don’t hear those stories. I saw a glimpse of myself in the future in his eyes and his profound acceptance.
We all carry that acceptance of our situation and maybe that’s really how I am. If and when I receive a transplant, I will be ready because of the peace and understanding that washes over the chronically ill. Going to movies and maybe away on a weekend trip or to an outdoor festival are all dreams for me now mixed in with the other images of being in hospital for a very long time. I do not complain. I am happier now than I’ve ever been in my life but it’s like winning a lottery and not being able to pick up the cheque. I have no worries, I sleep well and soundly and I wait.
That’s how I am. That’s how I find the will to grow and exist, because I am in constant preparation for a glorious tomorrow. If you make plans for a holiday or do something spontaneously without thinking such as going for a long drive on a nice day or to shoot hoops or play tennis, carry a little appreciation for your role in that freedom.
Drive down University Avenue on your way and notice the windows in the hospital wards, especially Sick Kids Hospital, or the equivalent in your city (hospital row) and smile up at the thousands of people who are living behind those curtains longing for the day when they can also head out on a highway. You are keeping their wishes safe in your activities and their dreams alive, as they wait.