From the archives …
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“I have no energy. I can barely make it from the bedroom to the living room. Sometimes I bloat up so bad I think I should audition for the Macy’s Thanksgiving Day parade. And then those times when they stick a rather large needle in me and they take six, eight, ten, who knows how many 2 liter Coke bottles of fluid from my abdomen – I am completely drained in body, spirit, and mind. I can’t eat, this constant nausea. And oh God, that terribly too sweet tasting lactulose with the anything but sweet results. The pain under my ribs and in my back constantly reminding me that something is terribly wrong. I’m only in my mid fifties, why am I going through this? I look in a mirror, and what looks back scares me – all yellow and gaunt. And then everything goes black and I don’t know if it’s for a hour, a day, a week, or a month. I can’t remember how to work my cell phone or the TV remote. One minute I’m sitting at a table with family, and the next I wake up in a hospital room alone. And I don’t want to know what they had to do to bring me around. My pride and privacy are gone. Lord, everything is going to be gone.”
About four years ago I was saying a version of the above quote. But these words no longer belong to me, but to a women that I see as a chaplain for a local hospice. And therein lies my challenge – I am supposed to see her through the eyes of a chaplain, but no matter how hard I try, I see what was once me. I know self-disclosure is on the Mortal Sin list for care providers. And how often have I trained others not to say, “I know how you feel”? But I do. She appreciates this, and she has come to see me as a sort of guide down her path of liver failure. We share other things as well – a rather irreverent sense of humor, knowing the strength of having a loving and supportive spouse, and a deep abiding faith. When I leave, we have a prayer, and she always sends me off with the words “Be careful out there, Brother Bubba” (don’t know where she came up with that). As I walk back to my car, I hope I’ve helped her in some small way. As I climb into my car, the still numb area around the large healed scar where that terrible rib pain used to be reminds me that our journey, one now so similar, will come to a fork soon. She will have to take the road I was able to avoid. Mine took me via a donor to life. Hers will take her to that place that she believes has been prepared especially for her. And as I drive away, I feel tremendously lucky, and then tremendously guilty. This is one of those times that I just plain don’t understand.
I have no idea why transplant was never an option for my fellow traveler. I’m sure it has nothing at all to do with the fact that I had insurance, and she and her husband (who also is suffering from muscular dystrophy) live a pretty meager existence. After all, we live in a country where everyone is equal and has the same access to health care as anyone else, right? It’s a law now, right? Something called the Affordable Care Act that I watched one late night from my ICU bed being passed. Well, there are those healthy folks in congress that have voted 42 times to do away with that law. But they’ve got nothing better to do. We all need a hobby. And we all know that life is not fair. Oh well.
I’ll continue to walk with our “patient” until that fork in the road takes us our separate ways. And I’ll continue seeing things through both my eyes and hers; I just wish she could see things just through mine. And on a larger scale, I hope for all of us that on our various paths through life we have the courage to see ourselves through the eyes of a stranger.