I met Abraham last summer at the height of cherry season. I was standing at the cartons of cherries shaded under a tent at the Farmer’s Market, picking some out. He came up to me to ask about my service dog, Romeo, who is a Silken Windhound. His manner was formal, yet gentle. His voice the same. Something personal about someone strange.
“May I ask you, “ he said. “What kind of dog?” And then again. “May I ask you how he assists you? “
The may I ask you was so respectful I knew this would be a time I would answer more thoroughly, even though legally I am not required to. “I have MS, and he helps me know where I am in space, simply by standing with me and waiting, walking when I walk, and so forth.”
He said, “ I know exactly what you mean. I have MS too. “
There seemed to be a weight lifting from him to say this to me. He was formally dressed in dark slacks, an open dress shirt, his dark hair neatly combed and parted. Almost like a uniform. He was probably in his thirties, perhaps 20 years younger than I am.
“I will look this breed up,” he said.” Thank you. I’m fine now, but for later.“
That word later really moved my heart. Oh, that later. When we don’t know what that is, don’t know what it will mean, but hope it will be manageable, or believe we will manage it. Or someone else will help us to. I flashed on all the watery experience, wrong headed, inevitable and finally life saving, that has rushed under that bridge of “later” I built myself.
Receiving a diagnosis of MS is, for many, a cause for despair. I can understand that. I have had moments of weeping on the bed at the prospect of no longer being able to walk. Or laid on the floor and cried silently because my throat was too weak to sing, or because I couldn’t hold the makings of a poem in my mind long enough to draft it. But I seem to do something different with my despair than most people. For me it is a stopping off place, a place to go on from after catching my breath. I think one of the most basic things that helps me do this is my tendency to refuse.
People don’t like to refuse anything. We feel awkward, mean, stingy. Like we are not able to go along to get along. I have felt the same. And succumbed to it. But looking back, there have been some very key refusals that in the long run set me up to be ready for how to best address my own healing, and how to become acutely aware of what that entails. To others, I may have seemed stubborn, even arrogant or selfish, in my refusal to plan for that Later in the usual ways.
When I was first diagnosed, a friend of a friend wanted to give me a wheelchair, passed down from someone’s wife who had died from the complications of MS. But I didn’t need it. Not yet. If that would be my Later, I saw no reason to hasten its arrival by being that ready for it. When Community Action Agency gave me a Low Income Home Owner’s Improvement grant, one of the improvements was to repair my crumbling back porch stoop. We decided they would make the porch wheelchair accessible by ADA standards. This would have involved constructing a long, wide cement ramp that would cut right through the tulip and iris bed and back into half the yard. At the last minute I said no. Let’s keep the threshold from the porch to the door ADA and put ADA steps. If I need a ramp “later,” I’ll get one THEN. Some may have thought I was in denial, but I felt such a sense of relief not to have sentenced myself to that inevitability in such a literally concrete way. Like I was keeping a door open. Or enjoying what mobility I had until it was truly time to accept I was giving it up. In my case, as it turns out, these decisions have helped to keep me on my feet until I could get to the best way to eat.
Like one of my poet friends who wrote so eloquently and plaintively about an MS support group meeting, I went to a meeting—but only once. It wasn’t for me. I refused that kind of approach, the resignation, the fastening one’s self to the drug companies. I loved one woman’s shining face there, though. Never forgot it. She was in a wheelchair, like one of the characters in the meeting room of my friend’s poem. But unlike in the poem, she was shining. She refused the requisite long biographical (and medical) introduction and simply said, “I’m just Judy.” In that instant she became my teacher. Her face smooth, clear of all blemish, and peaceful. I had never thought of saying nothing when asked a question like that. That’s a teaching I still grapple with.
When my Mom died six years ago, and my son Mike and I had to travel by car and air to the funeral, I needed a wheelchair to get through the airport. Then it became clear I needed a wheelchair to get through the funeral. My friend Vicki wheeled me into St. Anthony’s to sit at the edge of the front row in my mother’s wheelchair. I held one of my father’s hands from there, my sister sitting in the pew on the other side of him holding his other hand, while my son helped carry in his grandmother’s casket. When I got home from that trip, I had to lie on my bed most of the day for several weeks to gradually get my legs back enough to walk any appreciable distance in public: first down the block, then around it. Then I would walk halfway to the co-op, and sit on a bench at the bus station, resting, until I could go on. Things got better slowly, but all too soon that hard won recovery began to erode again. A year and a half later I began to consider getting my own wheelchair. That was 5 years ago.
But I refused the wheelchair again when it came so close. I was reading the memoir of yet another poet with MS. I pondered her beautiful words, her cutting words about failed alternatives to conventional treatment. Did that make me nod my head in assent? No. It made me ask myself, “have I really done everything I can do?” and go see if I could find the Swank Diet on the internet. It still wasn’t exactly what I was feeling would be right, but it was a huge piece of how to create what was right. And I was on my way
Perhaps the most shocking of my refusals from the standpoint of conventional medicine is declining the lumbar puncture that is now required for a a diagnosis of MS. Why did I do that? Because in those days (1996) I could. And because I had seen it up too close before. A time when I was compelled to say yes. I had felt so alone that day long ago in Southern California, alone at home with Michael, so small, hot, and still. He was not even two. His temperature went to 105. It was hot outside, too, and the car was sitting in the sun. I called the doctor. I called Michael’s father, then also my husband. In those days no cell phone yet. He had a job installing blinds and wore some kind of a beeping device. But he hadn’t called back, When the pediatrician heard the temp reading he said “meet me at the hospital.” Still no call from Michael’s Dad, despite the emergency message. There was the hot car. I had to go it alone. I needed someone to go with us, though, to swab Michael down while I drove, or the other way around. Called a friend (the one who gave me the phrase “picking cherries”). Line busy. Line busy. Line busy. No call waiting in those days either. She was the only one nearby I knew would be home. We drove over there as best we could, and I ran in and said you have to come to the hospital with us. She swabbed, I drove. When we got there, the situation was grim. No drop in temperature, listlessness. The doctor feared meningitis. There had been a recent outbreak. Life or death. They had to do a spinal tap. That’s what they called it.
The doctor looked me in the eye, said, “ this will be hard.” I tried to call Michael’s Dad again. Couldn’t get him. Life or death.
I said, “Okay. What do we do? I want to be in there with him when you do it. “
“It won’t be easy,” he said. “Since he’s so small, it hurts as much to give anesthesia as it does to take the sample, so we only take the sample. One poke.”
“ Okay,” I said. “But I want to be there with him.”
“ You have to be strong,” he said.
“Okay,” I said. So we went in. I stood on the side facing Michael, so little, so hot, so sick, and held both his hands. The doctor and the nurse were on the other side. I will never forget the scream. I held on tight and said, “ I know it hurts honey, I’m sorry, I love you, it will be over soon.” And it was. They were good. But still. That scream. I never forgot it.
He didn’t turn out to have spinal meningitis. Ruled out. A phrase I did not hear then, but now I know that was the procedure. And one people with MS joke ruefully about, since the diagnosis is only arrived at by a process of ruling everything else out. They didn’t know what Michael had. So they put him in quarantine. The nurses wore masks. I refused again. I wanted my son to see my whole face, know he was not alone. My friend’s partner arrived. He brought us dinner. About this time Michael’s Dad also showed up. His beeper had malfunctioned and he didn’t know it wasn’t working. He had missed the intensity of this reality, and was skeptical. Thought I had exaggerated it. I ignored him and focused on Michael, whose temperature rose and fell like flames eating an apartment complex. He learned the words “hurt” and “happy, “which he spoke each time the fever went up, or down, and he cooled off for a bit. I only left his side to go to the bathroom. The nurses brought in a rocker, and then two cots. They thought his Dad would stay too. But he was tired, wanted to go home, thought I should too. I refused. He left, self-righteous and disgusted. I thought to myself, “leave, but after this I am leaving you if you can’t be here for your son in this kind of situation.” He thought better of it by the time he got to the main exit, turned around, came back, apologized, stayed. I think. May have blocked that part out.
Somewhere in there I called my Mom to let her know. She got on a plane and came.
All this happened over Spring Break. By the next Tuesday I was in class teaching beginning poetry writing, explaining that my son had just come home from the hospital. Viral pneumonia, they called it.
So I knew, remembered that scream, which I felt in my body, through my hands joined to his while I acquiesced to what I had been told was a matter of life and death. The scream that in some way was for nothing but to rule a possibility out. And the neurologist was saying to me he was 95 percent sure the lesions on my brain were multiple sclerosis, but that if he did a lumbar puncture, he’d eliminate that five percent variable. I told him I could live with the ninety-five percent if he could. And in those days, he could. I guess now they won’t give you the diagnosis without ruling out that pesky five percent, because they can’t allow you to take the powerful drugs they prescribe with their debilitating side effects, that don’t alleviate symptoms, but function like a life insurance policy. A very expensive one. That’s the story of another refusal.
Then there was a dear friend’s joke about the five percent. After her husband came home one day long ago and said that he and an associate at work had figured out that 95% of everything in the world is quantifiable, she shot back in glee about how that 5% is so very unpredictable and large and ACTIVE. We used to laugh about this a lot, and believe in it. This was after my diagnosis, but I never made the conscious connection between what the neurologist had described and her joke, though it jumps out at me now. Was that what I was doing in my refusal of the lumbar pucnture? Betting on that 5 %?
Frankly, I didn’t know how to trust the neurologist, or a whole lot of anything he said. My disillusionment with doctors had started much earlier. I heard him talk about my symptoms being mild at that point. I guess that meant I could see, I had not lost the complete use of my legs or arms, my nerves weren’t constantly burning with pain. But my symptoms weren’t mild to me; they had incapacitated me, kept me from being able to do my job, support my son and myself. He talked about a diet that might help that required that you eat a lot of chicken and fish. I guess he was speaking of it (the Swank Diet) from the perspective of a person who loves red meat, but I was so overwhelmed, I didn’t get that, and could only think, but I’m a vegetarian and don’t really want to eat a lot of chicken and fish, and I have to eat cheese and eggs (or so I thought then) and they are limited on this diet. . I didn’t know there was a book I could read about it. (In those days no internet to look it up on, that was just beginning.) I mistakenly thought I had to go to Portland, and I couldn’t drive myself. I had moved heaven and earth to get someone who could take a day off just to drive me to Spokane to see this guy, who was now lecturing me because we had been stopped by traffic beyond our control and were 15 minutes late. It was the first time the specialist was younger than me. I wanted to throttle him, but instead I apologized for being late and asked him if he thought he could have a little compassion.
The message of diet got through, but not all the way through. I settled on what I thought was low fat and low protein, given the resources and the energy I had at the time. So I was not eating the Standard American Diet. And I got tested for food sensitivities, which eliminated wheat and eggs, and greatly reduced dairy for me. Somewhere in the back of my mind during that first year of living with the diagnosis, if I had been more clear, I might have remembered that same friend that drove Michael with me to the hospital had said years before in another context you could live on rice and beans, that she had. But at the time she had said it, long before the MS had shown itself, my Mom’s silly rhyme about beans being the musical fruit came into my head, dismissing it as a serious possibility. ( How my family had discouraged that because of the flatulence (though they farted and joked about it all the time, without eating beans!!) All the tangled yarns of possible connection bundled up and no way to know which end to start weaving with.
And now I was standing with my skein of imperfect experience next to this young man with MS, who was asking but was not really able to take in the enormity of even incomplete answers, just as I had once been unable to do. So it was hard to know what to say. I asked him if he had been at the local nursery the day before, since someone very much like him had also asked me about my dog then. He said no, but maybe it was one of the others. He was here working with others of his religion, who I guess all dress like he does, Anabaptists, setting up a school called Ploughshares in one of the next little towns to the east. I had heard dimly of this, and some controversy associated with it, which fluttered through my thought like a butterfly comes up out of a bush all of a sudden into the sunlight. Though he identified himself with the sect, he made no attempt to preach, or describe the school. His manner with me remained personal, as if he were confiding in me, because he was. He couldn’t possibly have had any idea how near or far this solstice and equinox celebrating stranger was from his own way of believing.
But it didn’t matter. The way I eat fluttered up, another butterfly. But there was no net to catch and offer it. We just smiled at each other. He thought I knew what he meant by “later,” and having lived through a large dose of “later,” I knew he didn’t know what it meant, but hoped that he did. I felt such kindness toward him.
“Thank you,” he said, as we parted, and I started to turn back to picking out cherries. “I will definitely look this breed up. And then, “Bless you,” he said. And there was no hint of Anabaptists to heathen in this. Just respect, kind eyes, and a blessing.
“Bless you too,” I said, meaning it with all my heart. I went back to touching the sweet dark fruit that would soon be gone.
I think of him often, and hope his “later” is gentle, and that there is a kind beautiful dog, at the very least, in his future. That he doesn’t have to be faced with submitting to terrible sacrifice, like the prophet he is named for, in order to be delivered from it. It’s a wish we all wish. And that we can make come most true if we are open to the truth about how to eat.
I didn’t know how to broach this truth with Abraham: that I apply my powers of refusal to making sure I stay away from foods I know will aggravate my inflammatory response, and debilitate me: that I refuse to see these limitations as a deprivation. They have given me my life back. Even better than that, they have clarified in me something unprecedented in my previous life: a gathering confidence in my body, and its power to heal, rather than cure, and with that, a gathering, anchoring trust in my own sense of what is best for me.
I am amazed at what doors such limitation has unlocked. One after the other, they open wide, and deep, and I keep walking through, into more healing As this miracle continues to happen at its slow, steady pace, the invasive ideas of a cure conventional medicine might attempt to provide become more or less irrelevant.