Pictures tell a thousand stories

When we should feel young and nimble, we feel like we're trudging through walls of molasses, the fickle morphine and oxygen condensers the only constant.  Though we may grumble about our creaking joints, our discomfort pales in comparison to what Craig must endure.  It's as though he's trapped within his body, with his limbs constantly betraying him.  As he says, life is hard. 

Around 6 a.m. this morning, I awoke to find a wide-eyed Craig staring at the ceiling.  As I drew his bedroom curtains, he asked in a frantic voice what I was doing.  I calmly told him that I was drawing the curtains so that the sun wouldn't wake him.  I then walked to his side to hold his hand.  He mentioned that he was frustrated being stuck in bed, looking at the same old, same old.  We all feel as though we're stuck at dead stop in between stations, only to stare out a window with no view.  But all is not lost.  What better way to impose order on the stagnant than to introduce a little color?  If the mountain will not come to Mohammed, Mohammed will go to the mountain through the wonderful art of photography. 

They say a picture can tell a thousand stories.  With this in mind, Erin and I had 8x10 copies made of some of Craig's favorite photos, which we pasted throughout his room.  The photos are windows to his past, and reminders of a lighter time when cancer was something other people managed.  Through a picture, we're able to bring Steve, Watermelon Slim, Thailand, Ghana, New York and other people and experiences that have helped form Craig's life to Craig.  They help inject laughter, imagination, and fond memories back into Craig's small world.  And like always, Mom hovers prominently from her perch on Craig's door.  It's as though she's watching over him as he works through his own process.  Though a photo is no replacement for the warmth of a mother's touch, I hope seeing her smiling with her hands in a "thumbs up" position provides Craig comfort.   I know she's with us during this time; she's kneeling beside his bed, holding his hand just as we do.  She's very much present and watching over him.   I hope her photo reminds him that she's never far away. 

Bringing some levity to the situation was the least we could do after today, which was a doosy by all standards.  We started the morning with a visit from Craig's regular hospice nurse. She confirmed our earlier suspicions that Craig has taken yet another turn.  Though his vital signs have stabilized, he's less responsive than a few days ago. Whereas before, he was able to hold a conversation for thirty minutes or more, today he's been awake for only a few minutes at a time.  He typically experiences a dip in energy shortly after receiving TPN, so this could be just his body following an established pattern. But, something is different. It's hard to describe, but the three of us feel that something has changed within the past 24 hours.  I never thought we'd become experts in dying, but alas, experts we've become.  We know the signs of low oxygen and poor circulation.  We know how to monitor pulses and respiration, and we understand what highs and lows mean for both.  We know the difference between being ‘sleep' tired versus systemic lethargy and general unresponsiveness.  We understand the tell-tale signs, when to panic, when to ride the wave.  We keep our cell phones handy just in the event we need to call Dad in from a walk or perhaps alert Emily at work.  In this case, knowledge is comfort.  Knowing the signs allows us to prepare for what may be ahead, and it allows us to engage Craig's nurse(s) in deeper conversation with greater understanding.  Yesterday, when I called hospice to report Craig's symptoms, the hospice nurse said "you guys are the most competent family we've come across, and we're proud of you.  For you to say you may not be able to handle a symptom, it means there may be a problem." 

Though we're monitoring Craig's symptoms, this isn't to say that death is imminent.  He's rebounded before.  A growing sense of security in one realm begets an accelerating sense of menace in another.  We're not sure what it all means, and we've long ago relinquished control to the gods that be.  Talking symptoms is just some of the same cancer reportage we've grown accustomed to; knowledge is something we cling to for comfort.  Still, we're aware the body can handle only so much, and it appears his time may be near.  I'm content just being near, and feel honored that he would choose us to be in his company during this important time.  - J