As I lie here in bed with the first sun in twelve days piercing through my window, I feel nothing but gratitude. I have been humbled, deeply touched and teary-eyed by all the emails, comments and calls I have received over the past week offering support and love. I am appreciative beyond measure. Each of you has played a part in lifting me up out of bed and helping me to find the strength to nourish myself, get me back on my mat, and take a few short walks near home. Baby steps, but crucial to the doctors who, in two weeks time will be assessing whether or not I’m fit enough to endure a transplant. On Wednesday I was told, “…no matter the pain, you have to force yourself to eat and stay active. It’s not going to be easy, but you’ve got to pull yourself up by the bootstraps and soldier through.”
For those of you who know me, it may be difficult to understand how in a matter of weeks a strong woman with a little excess ‘junk in the belly trunk’ could be reduced to someone in jeopardy of wasting away; but when it’s painful to eat and one lies in bed for days on end, it can happen. Of course, it’s a little more complex than that, but lets just say the liver is responsible for metabolising fat and protein, and when the liver doesn’t work properly, the body looks for its in-house stores of both. Then there is the issue of fluid in the abdomen, a sidekick of PSC, which gives people with liver disease a specific look; skinny arms and legs, round torso. I’m not there yet, but over the course of several years more than one person has blushed after posing the question to me, “Are you pregnant?”
On the 7th of April I go back to the Royal Free as an ‘in-patient’ for a week’s worth of tests and evaluations that will ultimately place me on the transplant list. The waiting time is determined by numerous factors. In my case, the big hiccup is in the irony of my blood group. B+. Be Positive. Go figure. The rarest blood type, only 8% of the population are in this group, and I guess I will really need to Be Positive that a B+ liver will come available. What a morbid thought. In a sense I suppose I’m wishing for some horrid, untimely death of a young, fit person to save myself. When I look at it that way, it’s really disgustingly selfish. On the other hand, deaths occur all the time, it’s inevitable. In this light, the intention is behind recycling parts that still function without actually causing harm; the harm has already been done. It’s like my vegan friend who eats fresh road kill (deers, bunnies, etc.). The way he describes it, it’s a gift that shouldn’t be taken for granted (it’s the only meat he eats). All I know is that if and when I’m given this kind of gift in the form of a liver, a day won’t go by without thanking and bowing down to the soul who gave up their life to bless me with mine.
Equally, I cherish each of you for holding me in your thoughts, sharing your strength and energy, and for keeping in touch in some way. And now, to pull myself up from my bootstraps, time to find my land legs and go for a walk!