I'm sitting in the living room watching Olympic baseball with Jill. Just recently, we heard Craig yell "hellooooo, Jill and Erin? I need help". We ran to his room. All the while, I yelled back, "coming, we're coming Craig. We're right here." He needed his urinal. Whewww. It stops my heart each time, partly because he has to call for us when we are usually there right beside him, and partly because you never know what you are responding to.
After his urinal needs, the sisters saddled up beside him as we often do. Quietly, he started talking about his condition. He spoke of his profound weakness and said he's now tracking it, that it seems to have progressed at an alarming rate from a few weeks ago. "If you compare where I am now, to where I was a few weeks ago..."
99.9% of the time, I see Craig as he is to me -- my best older brother, 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, though it's, admittedly, shockingly different from who he was. That was the same with Mom. Only now do I really "see" how sick she was. We'd gallivant around all the same with her, 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 quickly changing physical appearance and general health make it more readily apparent where he is in the process of life and death. Just the other day, he caught his reflection in the mirror. For the first time, he remarked, "Good lord. I look skeletal". Later, he said how surprised he is at how different he looks and how his arms have no muscle (coming from a guy who was chiseled and buff as late as January). You could read this one of two ways: it's a shame he's noticed his physical deterioration, or, wow, it's taken until now to notice his physical deterioration! We live in the latter. Day to day, not one of us flinches at the changing scenery, though we may take note and discuss it in terms of how we can help him given his diminished strength and growing belly distension. For Craig, it is remarkable that he has yet to "feel" as thin as he is, or to notice the significant changes in his appearance. Maybe it's the protective bubble we provide; maybe it's his unbeatable will and perspective. Whatever the case, it has not yet entered our daily dialogue (apart from his occasional mentioning of his pregnant belly).
But, it's in the shadows and rare angles of light where the .1% lies. It is in that small space where I acknowledge that my brother and best friend is also dying, that this is 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 perform 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 destination 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 blue, fluffy neck cushion with each beat. We know where he is in his process. Craig is becoming aware of it. As he said, he's tracking it and now wondering where he is in the process.
He mentioned the TPN, and perhaps not receiving "nutrition" but once a week now, as the culprit of his weakness. I delicately reminded him of Sandy, the hospice nurse's, conversation with him; that the TPN is likely not responsible for the weakness; and, in fact, we see the inverse when he's on it. He becomes more tired, more out of it, more water-logged and miserable. He asked me, "Are you sure?" It's a sad question to respond to. On the one hand, you'd like to tell your brother that the one "nutrition" source is doing a body good and that it'll be okay, but the fact is that it isn't and that reality means that we are at a point of no return. It's a sad, sad situation as Elton John might sing, and it's growing more absurd.
As per a conversation with Sandy, Craig is now on a once a week TPN regimen, and today was the lucky day. Very shortly after hooking him up, he began complaining of his belly expanding quickly; he seemed much more agitated and generally uncomfortable. Sandy revealed that his blood pressure was also elevated as was his heart rate. Something was amiss and the only logical culprit was the TPN. In order to put the TPN on, we have to disconnect his antiemetic bag. Though he did not vomit or feel nauseated, the switcheroo may have thrown his liver off balance. That theory didn't check out. More likely, the TPN alone overwhelmed his already failing liver further, causing his body to react. He felt anxious this afternoon and wanted to get out of the apartment in that panicky expression of which we've grown accustomed. He made it through one third of a movie before growing too weak and heading home (thank God... spared us from enduring more of the craptastic feature film). Still, his symptoms worsened remarkably to the point of him feeling faint and extremely, extremely weak.
We called hospice and they confirmed our instinct to discontinue TPN and re-hook the antiemetic bag. Within hours, he started feeling better, though he still feels very weak.
To say he's weak does not adequately capture his current status. I feel weak after a heavy work out; someone else might feel weak after a fast of some kind. Craig's weakness is such that it is physically difficult to smile. He noticed this change in him the other day and intently tried to smile, but it came out as a grimace. No bother, he smiles in his eyes. But the effort to draw the necessary muscles into a smile is too much for him. To stand while urinating is becoming too effortful, as well. To say he's "thin" doesn't work either. As jarring as the comparison is, he's almost as 'Christian Bale thin' in the Machinist. The fact that the guy wanted to leave his apartment is courage above courage, strength above strength.
In fact, on the day he saw his reflection in the mirror, he decided he wanted to walk to the elevators and downstairs. He was standing tall with mom's walker when he noticed his "lack of strength". I reminded him later that his strength inside far surpasses what is seen on the outside. His strength and courage, like Mom's, are without measure. ~E
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