Monday, October 27, 2014
Craigy
Like D, I'm finding it difficult to come to terms with Craig’s illness. His condition breaks my heart. Unlike Mom, Craig’s in pain; he’s uncomfortable; he’s flattened by fatigue and unable to live life, however short it may be. This about turn in Craig’s health has caused a whiplash that will take time to heal. Just six months ago, we were running OSU’s cross-country trail, and talking about how hard it would be to move on with our lives after losing Mom. He’d cry with us, laugh with us, and share his dreams for the future. It seems so unfair. Mom had a loving family, a career, and lifetime of memories behind her. Though she still had plenty of life to live, it was easier to draw on those experiences for comfort and healing. Craig’s life is still ahead of him, with plenty of dreams left unfulfilled. He wants to master the harmonica; to research law; to travel the world (he’s off to a good start); and share his life as a husband and a father. Accepting Mom’s fate wasn’t easy, but I could understand it. Accepting Craig’s, well, I understand it intellectually, but I’m not there yet emotionally. Like Diane said, I’m still holding out for a second chance, for a sea change that will wash all this away.
While we were in Stillwater, we watched old videos from the days just after Mom’s surgery, as well as video of Craig’s 30th birthday. We had orchestrated a trip through memory lane, followed by a mock séance for C to rid himself all the negative energy that overpowered his 29th year. The family instructed him to pop several (real) balloons of negative energy with darts. The balloons were marked by a paper representation of the specific ailment/life trauma of which he was ridding himself (e.g. Bell’s Palsy). Dad would welcome each burst with an ohm, and Diane would come in with her new-age sage. His séance ended with a fire walk consisting of construction paper. Craig loved it, and played along, giggling throughout it all. And that’s Craig. Those who know him well probably have their own stories. He’s the guy who takes pictures of everything; saves trinkets from God knows where; laughs randomly; and dedicates enormous energy doing creative things, just to make people smile. That guy is somewhere buried deep. Laughing hurts. Finding the energy to take a shower, brush his teeth, or put on clothes is difficult. On occasion, we’ll see glimpses of him, but those occasions are rare. Cancer’s self-seeking temper has taken his body and his vibrancy. Mom was my rock; Craigy’s my best friend. To lose him, well ... -- J
Back in Denver
The most beautiful night of my life
the desperate cry of a man trying to push the silent button
Sno-Globe
you can't form a snowball even if you scrounged for snow over a city block!
seen more snow in a sno-globe
Railay
The Grieving Critic
To the point: In the Name of
Return
The NO NO NO moment
99.9% of the time, I see Craig as he is. He's still my best older brother. He's still that guy who can generate a quirky statement, and pummel you with his wit whether on demand or not. He's that guy who digs deep just to participate and be present. He's my brother and I'm lucky to be able to call him that, to have known him all my life. I love him so much that the way he looks, talks, moves around is normal to me "so what?" moment, though shockingly different from who he was. That was the same with Mom. Only now do I really "see" how sick she was. We'd galavant around all the same and that is exactly the way it should be. Be loud. Be proud. People who are at the end of life should live life just the same!
The same is true with Craig, though his physical changes make it more readily apparant. In the shadows and rare angles of light is where the .1% lies. It is in that small space where I acknowledge that my brother and best friend is also dying, this is also real. It's a difficult thing to try to describe. The best analogy I can think of is walking. You don't regularly pay attention to the motions and the thought processes that perfom a complicated series of muscle movements and coordination until a rock in the shoe or bothersome injury make it unavoidable. For awhile, Craig's process was like walking, paying more attention to the scenery and the detination than the effort. Now, it's a bit of the reverse. It's hard not to notice his eyebrows creeping lower to his eyes from his face thinning down. It's difficult to avoid the meaning when feeling his protruding shoulder girdle, spine, and sit bones. It's impossible not to respond to his aggravated coughs at night, or watch his chest rise more slowly than it has in the past. And, it's unavoidable to see his racing pulse literally knock his neck brace with each beat.
On the "Reels"
--I was Craig's medicine post from time to time while in Avon. We had moved the bed mattresses so that Craig would have an easier "mount and dismount", and so that we could sleep around him. However, mattresses sans back rest make a sleepy boy lean, and lean he did - backwards. Already on oxygen, the smallest effort keeping upright can be plum exhausting. To ease the trouble, I'd sit behind him and hold him up while Jill would hand him his meds. It brought back vivid "highlights" of "Tilt-A-Mary" and helping mom with her leaning issues. As Craig tilted his head back to tip his cup, his hair would grow closer and closer to my cheek or chin until finally touching. Back in the day, this probably would have bothered him not only by being too close but by the threat of ruining his hair. The tenderness fell heavy on the moment and I remember looking at Jill and smiling to each other, understanding the poignancy of that moment. I felt like hugging him and never letting go - a feeling I have most days and nights. I'll never forget how it felt for the three of us to be so close and locked in touch.
--No matter how exhausted Craig may have been in Vail, he would rotate his head towards Jill's guitar playing and listen, intermittently remarking on the song or a song he would play. The presence of music was not only calming, but a unifying force between us all and one that pleasantly piqued Craig's interest even when he was dog tired and couldn't keep his eyes open. A rotated head said it all.
--The jaunt from his mattress mountain to the bathroom required at least one "spotter" to not only tow the oxygen, but to support Craig when his fluid filled legs or belly through him off center. I recall memorizing how it felt to walk hand and hand with my brother - his soft hands, yet firm grip; the way he quasi waddled as we walked. To him it may have been the extension he needed to have confidence in walking. To me, I was just proudly walking with my brother.
--After an outing at the Betty Ford gardens, Craig took off his well-worn University of Michigan hat, which I believe we bought him back in the day. I love that hat and love the way it looks on him. It reminds me not only of Craig but of mom, since they share that as their alma mater (law school for Craig). He took of his hat and patted down his hair as he did in the past. I came upon him asking something of Emily, but too late to discern the question. Then, with big full blue eyes and a slight hint of concern he asked, "Do I have hat hair?" "No", I replied, even though he sorta did. Growing up, and especially in our later years, we were each other's mirrors for hat hair and the like. It was nice to hear him ask that familiar question, and to once again be his mirror.
--Diane and I were helping Craig with putting on his lotion and sockies one day while in Frisco. Diane asked Craig if we were good sisters. Without hesitation and as emphatically as his strained voice and waning energy would allow he replied, "yeah, you're GREAT sisters" (eyes widened and eyebrows raised on the great). It is not as though we ever questioned that or wondered, but booooy was it nice to not only hear the emotion but see it register on his face when smiles and other facial expressions are a rare commodity of late.
--Craig can be a difficult fella to read, sometimes. For months now, conversations take the tone of "how do you feel", "here is your so and so medication" rather than waning philosophical questions of whether fire is alive. Normally, I banter about with the best of them. Meander from topic to topic like a tabloid, but with Craig I sometimes clam up. Not always, just sometimes. So, when an opportunity presents itself of being THE only person with Craig, I sometimes get a bit star struck. What do I say? Do I say it now? Does he even want to hear it or would he rather sleep? We rotate private time with Craig and one moment occurred only a few days ago. I sat beside him holding his hand as he slept. He awoke and we briefly talked about superficial things like the Olympics. When he asked of the others, I thought that was my cue that "time was up", bring in the clowns. I said I'd get them and began to get up but he gripped my hand tighter and looked at me and said, "It's ok, I was just wondering. This is nice". I smiled, sat back down and told him I loved him.
--When Craig needs us, he usually doesn't call us individually by name but by the collective "girls". In any other circumstance said by any other person, the word "girls" would stir the fire in me. We didn't get this far as women to be called girls. But, for Craig, it is one of the most endearing words he could call us. It speaks to a sibling relationship uniquely ours; we've been his three little sisters and he's been our big brother. "Girls" stands true to his protective older brother position in our foursome but drips of vulnerability when heard in the context of which it is stated - now usually a request for help. Tonight, he called for us from his bedroom. "Giiiirls?" Mom used to call us that when ushering us to dinner or to bed or to stop being so noisy. She'd call, "Girrrllls?...and boy" as Diane and I recently remembered. Tonight, it was just girls and a confused Craig who had just woken up to see his sisters not by his side for the first time. We were just outside his room and ran to him when we heard his call. We took his hands and put other hands on his legs for comfort, and told him we are right there with him -- always and forever.
--Craig has become too weak to try his physical therapy exercises on his own or to move much on his own, for that matter. He looks forward to Diane and her "body work" like a kid might look forward to a Chucky Cheese outing. Yesterday, with each extension and flexion of his leg, he whisper "oh, yeah". I know the comfort that affirmation gives Diane. It's the same affirmation we all seek in knowing that we're doing right by Craig and helping him in whatever way we can. Diane is his body worker; Jill is his random story teller; I'm his bill payer, cleaner and mail checker; Emily is his girlfriend (always important to have); and Dad is, well, Dad. To steal a ridiculous Stillwater slogan, we're "citizens helping citizens run better".
--We take turns watching Craig since he's at a stage where he really shouldn't be left alone. Having him call out for us takes more energy than it's worth. Dad stayed with Craig for an afternoon, which is rare since Dad sometimes feels anxious in the caretaker role. He's mentioned before with Mom's process and with Craig's that that is not his forte'. He is most comfortable and has more confidence in having us deal with the meds, diet, shower, etc, which works out for all of us since we love doing it. He joined Craig one afternoon and the image couldn't have been sweeter and more reminiscent of when Dad would read us bedtime stories. I still remember how he'd flip the pages and how it felt to be tucked under his arm with my head on his chest, reading along. That image flashed forward as I secretly watched him. He was quietly reading one of his books while Craig slept-ever vigilant to Craig and ready to call us if he needed help. This was Dad being a Dad to his son with cancer, and it was beautiful.
(As an aside, I remember Mom reading bedtime stories to me, as well. Not but a few months ago did she read something aloud and Jill and I looked at one another startled that she was reading just as she did when we were kids -- soft, smooth, calming, motherly, wholly Mom).
--We went to the Denver botanical gardens on Tuesday as an early evening outing. Emily joined us after work as we toured from pretty garden display to pretty garden display. Jill remarked on how romantic it would be for a third or fourth date. Craig quipped, "you hear that Emily?" To hear him joke, flirt, whatever is a highlight to the day. When healthy, these things would roll off the tongue. We could start a fire with our sarcasm and banter. It's a moment to cling to when it peaks through, same with a smile. There are times, especially on our outings like the aquarium and gardens, where a small smile creeps across his face. Facial expressions seem to take too much effort, energy or inspiration these days. For weeks, they've been shadowed by the more familiar glower or grimace (not that I'm complaining. Just a notable difference in expressions. I'd scowl, too.). From time to time, a smile will cross his face and it's enough to pause time.
We paused time at the botanical gardens to capture smiles, as well as touch the "touchable flowers" and take in the scent. We wheeled Craig near a patch of velvety plants; he bent low and softly glided his fingers across their soft surface. In that moment more than any that day, I was grateful that Craig was still well -- well enough to feel the plants in his hands, the breeze in his hair, and the sun on his face. It reminded me of that line in the movie "Mother". I'm likely butchering it on the spot but it's something to the order of "Lord, let me know how it feels to be alive before I die". How I hope we have many more chances ahead.
--Each time a hospice nurse, doctor, or any other person for that matter asks him what he wants to do or what he's enjoyed doing, Craig immediately refers to a recent family outing. They are highlights on his video reel, and events he hopes to continue doing. Folks will ask him what he wants to do and he inevitably will recite ideas we've presented. To know that he's enjoyed these events and looks forward to the ones to come pulls on the heartstrings. Whatever we can do to help a guy out... It certainly feels good to make a difference in someone's life, and feels even better that it brings happiness to Craig.
--Craig seemed to have taken a hit from the happy pipe last night as we watched the Olympics. He was on fire, cracking wisecrack after wisecrack. It was reminiscent of the good ol' days where we'd compete in who could say the sarcastic little quip fastest and mute out the other. He fed off of us without effort, and with alacrity and desire we haven't seen in some time. His mood, his energy, his wit, his ease, it felt like old times with the family and I wish so desperately I could bottle that up. By writing, I suppose have.
As the twin says, "These are the memories that make a life." ~E
A Night for Mom
DNR
Despite his poor form, it’s nice to see him ‘up and at ‘em’ after spending most of last week in the hospital. He’s had more energy since discontinuing his chemo (and starting the Ritalin), and though his legs and belly remain swollen and achy, he hasn’t complained of pain. We’re hoping this continues at least until Sunday for him to enjoy his special day with friends. We’ll head up to Boulder tomorrow to give him some time to recover from the road trip. The swelling makes him a bit road-weary, but nothing a few stop-and-stretches couldn’t cure (or at least help). After that, it’s off to the mountains for a spell. Just taking it one day at a time…
Holy hades. I can’t believe. Craig just said Uno. Is Emily taking one for the team, or has he really come from behind? Can’t wait to find out… And indeed, Craig has just done the unthinkable. One hour and four deck shuffles later, Craig has just placed his last card for the ultimate Uno comeback. That’s what you call keeping your head in the game. The s-- J