Whenever there is something that we don’t acknowledge, or that we cannot figure out, we say, “that is the elephant that is in the room.” The idea is that everyone knows the elephant is there, because it is so big, no one can miss it. But there is also an acknowledgement of denial when we talk about the elephant in the room, and that denial can be seen with the onset and body regression of dis ease. So it is ironic that Ev and I are on the island of Bali, with literally 30 elephants outside our door. And while I don’t want to write about thirty elephants, I do think I would like to acknowledge a couple that Bali has brought back to me in ways that I cannot deny any longer.
The first is that dis ease has its own rhythms. Those rhythms are sometimes hard to discern, but when looking back, you can tell that they have played themselves out in a way that cannot be ignored. Here is an example that comes with ALS. For a lot of us PALS, falling is one of our first symptoms. If I am honest with myself, I can point to my first real fall as taking place one year ago, here on Bali. I put my left foot up on a step and then did not have the strength to raise myself up. We had been walking for hours, and when I fell, I actually broke a bottle of beer in a plastic bag I was carrying, just barely missing cutting myself badly. I jotted it down to clumsiness, but kept the skinned shin for over two months as a reminder. This week, one year later, I fell the very same way, only with my right leg. I have learned to lead steps with my “good leg” since my left is so weak, but we had been walking what was for me a lot, maybe a couple of blocks, and there it was. Luckily I had nothing in my hand except for a cane, and even this went clattering as my leg collapsed. So what is the rhythm?
It is hard to explain this, except that I found myself reflecting on the marvel of symmetry as my legs continue to go away. All life moves to these rhythms, and our belief that we can control them is just another elephant in the room. I actually try to deny them by forgetting that they happened, or chalking them up to other things. But there is no denying the old-man, shuffle-totter of a walk that I now perform, a walk that is well beyond my 55 years. And it is Bali where I fell first with the left, then with the right.
Another elephant for me about dis ease is that dis ease managment is so focused on the unmanageable. I feel so lucky to be working with an ALS Clinic, especially when I compare notes with friends who have cancer. For them, their dis ease management is doctor to doctor, symptom to symptom. At least ALS Clinics have gotten this part correct–what affects part of me, affects all of me. If my spirit is affected, my body cannot be far behind. And this is really tough for people in the curing business. If you cannot cure it, then you have to balance how information is shared with the spiritual strength that a person brings to their particular moment of dis ease. Imagine trying to do that doctor by doctor.
But even with the coordinated efforts of a clinic, it is hard. We see each other every three months, and a lot can happen in that time. As desirable as it is to stay ahead of the symptoms (and believe me that is very desirable), it is often a game of catch up if you haven’t seen each other for a quarter of a year. And with a dis ease like ALS, the body regression can take on other meanings–in three months a person can go from talking to not talking, breathing well, to requiring breathing assistance. Such developments are open to interpretation by both the person with dis ease and the families, friends and professionals around it. Is the person not talking to conserve energy, or is it something else? Should I lie awake at night and worry about his breathing rhythm, or is it something else? This is hard on caregivers, and it is hard on PALS. Dis ease management is about barely managing, and at some point, you don’t. That is a hard elephant to look in the eye, and yet it sits in the room whenever you are talking about ALS. “Son, this elephant says you are going to die.”
So then, what I have figured out with all of this is that it is far better to name the elephants. They exist! I actually got to ride a couple in the past two weeks. You might as well go ahead and do it, because they are too big to ignore, and too present to deny. Each one of us has our own elephants that plop down in our own little corners of this heaven on earth. I know that now. The physical ones are the most immediate, but denial could be psychological, social, emotional, spiritual or any combination of these. My worst denial is that I am changing, and as I change, I have to change to keep up. My old normal always gave me the rhythm of life to make adjustments. Now I have the rhythm of dis ease, specifically ALS, and I have to work really hard to keep up to its steady beat, even though I cannot even tap one of my toes.
On the other hand, at this place we were staying, they call you and say, “Your elephant will be there to pick you up in a few minutes,” and then you climb onto the back of the elephant, and you make your way to dinner.
That is denial I can live with.