One of the many benefits of terminal illness and especially waiting for transplant is that I can go to bed and wake up at whatever time that I please. Yet I find myself matching the rhythms of the world around me to hold on to any leftover sanity that may remain. The odd time, I turn off the light at 2:30 am having read for a while in my best attempt at comfort in bed with reading glasses sticking into one side of my forehead.
I prefer to lie on my right side with two pillows offset to one another under my head and a throw-cushion in front to prop up the book. The top cushion is about six inches behind the bottom cushion to create a nest for my head and the necessary plastic attachments to my ears for my eyes. I constantly adjust as the pages turn but I have tried the other side and it is only a rare circumstance when I find comfort on the other side. The throw cushion is a necessity only due to pillow purging from move to move, and the book propping and placement could be rendered easily with a shallow pillow or folded blanket.
When I’m in hospital there is usually an abundance of triage nurses, emergency nurses, specialists, on call Doctors, fellows, gals, haha, day and night nurses, food, sheets, blankets, ice water, antibiotics, saline drips, oral meds, intravenous lines, and clean bathrooms but I can always depend on a shortage of pillows. So I’ve learned to prop up my head and book with clothing that I’ve brought for a potential long stay, until I am admitted to an appropriate floor (usually the Transplant wing) where I only need to prop up the book with personals. One pillow is good, very good on some nights and the odd time I have witnessed miraculous moments when I am brought a sandwich and a second pillow in emergency! I know!
One of the nice additions to being admitted for a few days stay is the daily dawn visit by a nurse chosen for her soft voice and sweet disposition not to mention a mothers’ light touch who arrives shortly after the sun has made an effort to creep through the night blinds on the huge hospital room window. During the day, it is not unusual to watch a whole city go and come from work, through these massive day portals that are usually situated towering above a grand inner city avenue or street. It is yet another method of feeling once removed to witness the movement of the ant-farm like humans walking and driving and riding along. The dawn nurse has one duty and that is to draw blood for various screenings so that that the specialists three hours later can stand at the foot of your bed and provide a commentary on whether things are going in the right direction or not. Looking outside it seems that things work just properly when moving in all directions at once, but that deduction does not apply to disease or respiratory virus or kidney functions. The Doctors assess and move on with a hearty salute and a rundown of daily procedures and mini trips to various diagnostic departments that you will be entertained by whilst the hours fly by in the busy daylight hours. That first nurse wakes me with a last line of a lullaby by gently whispering and then murmuring my name. I have had the most wonderful conversations with these dimly lit angels, not only about the impending weather but onward to my improving condition and brief history, sometimes a brief description of my daughter, or mother, closing with a spiritual discussion about humanity and some memorable quotes from the grandmother of the dawn apparition. Tender moments are these, and most comforting, that leave me with the option to turn on the TV and catch the waking news or to recline and close my eyes for another hour until vital signs must be taken by a familiar face.
I wonder sometimes if this is the way the people upstairs in this urban mansion, the rich, live. Sleeping gently until a reliable lady enters the morning room to draw the curtains a little bit and mention a good morning. Then members of the house staff periodically visit to describe the coming day followed by breakfast served warm on a tray with muffins and scones and hot coffee and cold juice and milk. There is the request for the TV to be activated and the newspaper to be left within arms’ reach. How grand! To taste the life of the financially unencumbered few by luckily falling into serious and life threatening circumstances. Life in the future could never be as fulfilling as life is now.
On a day like today I wake earlier than expected and decide to take my medications and sit here in the quiet and remain relaxed and contemplate my thoughts. Breakfast is always prepared previously and the only task is to cut some fruit and pour some juice. It is Saturday, a day off for most people where the rhythm of the day and the city, shifts slightly to a happier clamour. In other times of my life I would wake wondering how to squeeze another two hours sleep from a morning that meant nothing and then on to the arrangements of the day. My head would be pounding in anxiety with the constant sense of regret of trying to fit a week’s holiday into a Friday night bar tab.
Nowadays I find the earlier I can wake the more I benefit from filling up the day rather than my bed. It will be a full seventeen hours before I adjust my pillows once again and prop up my book in the easiest manner to catch up on where I left off last night, fall into the narrative of a couple of chapters and then place the book on my night table, remove my reading glasses and switch off the light on another satisfying day at home…or, in my second home depending on what direction my metabolism decides to take, at least for today.