The Ear of the Heart: An Actress' Journey From Hollywood to Holy Vows (66 page)

Some days I would be hit in the face. It could be ninety degrees, but I felt as if I were wearing an icy mask. My face was cold—not to the touch but from the inside. The nerves in my cheek would twitch. I could feel them jumping, and I knew that freezer door would open and my face would go stone cold until nightfall. Every day it seemed as if I was starting all over again. I’ve never felt so vulnerable. Was this going to be the pattern of the rest of my life
?

—Sheila McGuire remembered your saying you were living a life of redemption. That was one of the reasons you had to accept this illness—because when you came into the monastery you offered yourself to God and said you would accept anything He sent you.

   
That’s not entirely accurate. Believe me, I’m not that holy a person. The redemptive life, to me, is not asking for calamity, but asking for the ability to withstand whatever calamity is set in my way. I don’t have to be brave all the time. I can ask the Lord to be brave in me
.

The very next doctor I saw listened to me sympathetically and then asked, “Mother, have you thought about seeing a psychiatrist?” That made me angry, but if I had wanted to give him a punch I wouldn’t have been able to make a fist! I didn’t want to admit I had something in my body that was advancing and could not be treated. And I couldn’t face the possibility that it might all be in my mind!

I went home and wept over my total helplessness. Then I got really mad. I picked up the phone and dialed the number of the neurologist in New York City whom I had previously seen and had liked very much. I was surprised when Dr. Norman Latov answered the phone himself. He had not forgotten me
.

“
No, you are not crazy”, he assured me. “All pain is real
.”

I got permission to put myself into Dr. Latov’s care
.

Forty

The term
neuropathy
is used to describe disorders resulting from injury to peripheral nerves. It can be caused by a number of diseases or conditions that affect those nerves
.

Dr. Latov’s early diagnosis of my illness was sensory peripheral neuropathy. He recognized the symptoms I was experiencing because of his research in the area and because he has personal knowledge of the disease. Dr. Latov is a victim of neuropathy himself, although his in remission
.

“In Mother’s particular case,” Dr. Latov told me, “she was diagnosed with other possible conditions because many of the physicians she saw weren’t familiar with neuropathy. She had neuropathy all along because no other disease causes
all
of her symptoms. And her examination, which showed sensory loss, confirmed this diagnosis.”

There are more than twenty known possible causes of neuropathy, Dr. Latov explained. Diabetes, rheumatogocial diseases and autoimmunity are major causes. Some infections can cause neuropathy and so can many toxins and drugs. “Neuropathy is, in itself, not always curable,” he said, “however, if we can identify its cause, and treat it, the patient can improve.”

Initially, Dr. Latov tested for causes. Mother Dolores underwent about twenty different tests, but these were inconclusive.

—
Based on those tests, Dr. Latov redefined his diagnosis to idiopathic sensory inflammatory neuropathy. Having a true diagnosis at long last was a relief. It was also a disappointment
. Idiopathic
means nobody knows why
.

“We call it idiopathic because we don’t know what causes the inflammation”, Dr. Latov said. “It is the diagnosis in about a third of all neuropathies. In some cases the neuropathy improves and stabilizes. My neuropathy did. I still have some residual symptoms; they’re not all gone, but it stopped getting worse and is tolerable. In other cases, it continues to get worse. And in about 20 percent of idiopathic cases, the disease burns itself out. Again, we don’t know why.

“Mother’s symptoms fluctuate. She has good and bad days. In her case, on the bad days—when her disease flares up—she can experience a great deal of pain because her type of neuropathy attacks the nerves that carry pain sensations from the skin to the brain. It doesn’t attack the motor nerves directly, so it is not crippling, but it can cause incoordination and severe fatigue. Motor neuropathy, on the other hand, which damages the nerves that control the muscles, causes weakness but not that much pain.

“Pain is an insidious thing”, said Dr. Latov. “It follows you everywhere. It affects everything you do. It wears you down. In some ways, it’s harder to deal with than motor disability. When I met Mother Dolores, her level of pain was extreme.” Thus pain management was an important part of Mother’s treatment from the beginning.

“How people can accommodate living with pain is something that varies from person to person”, Dr. Latov continued. “Whereas other people might be totally consumed with this, she’s continuing to function at a pretty high level, being able to interact and to give guidance and reach out to other people. She’s done that very well, which I think is a testament to her faith and inner strength.”

Dr. Latov immediately began treating Mother Dolores with intravenous immunoglobulins (IVIg) “It’s a treatment that’s widely used for inflammatory neuropathies as well as a number of other autoimmune conditions”, he said. “It’s also the only anti-inflammatory drug that, in addition to suppressing the autoimmune component of the immune system, actually enhances immunity. Most people taking IVIg report that they have fewer colds, because it protects them from infections.”

—
That’s true. Since I’ve been receiving the IVIg, I have not had my usual bout with flu every winter, and I don’t need to get a flu shot. In fact, I can’t get a flu shot
.

Twice a month, for the IVIg treatments in Manhattan, I have to miss Terce and Mass. I admit I found that just being in New York after more than three decades was terrifically energizing. In Dr. Latov’s office, I sit alongside other neuropathy patients for the two hours it takes for the contents of a plastic bag to drip into my vein. The treatment is meant to prevent the inflammation that assaults the nerves in my feet and legs and to keep it from spreading to other parts of my body. Basically it strengthens my immune system, and I have more energy
.

The program is open-ended. One woman I spoke with stated she has been receiving these infusions for more than fifteen years. That was not encouraging news and served to remind me of something Lady Abbess often said to me, “You must remember, you have not written the script
.”

More often than not during the procedure, I’m able to visit with Maria, who lives only a couple of blocks away and arrives pulling a small carry-on case, which makes her look a lot like a pharmaceutical saleswoman. Tina Tockarshewsky, the president of the Neuropathy Association, also visits when she can. When Dick has been on this coast, Dr. Latov has turned his conference room over to us so that we can work
.

At first the treatment left me wiped out. When I returned home I went straight to bed for at least a day. But over the years I have become more tolerant and have more vigor. Sometimes the alleviation of the pain is immediate. It’s not like walking on needles; it’s like I have sponges on the bottoms of my feet. When I arrive home I’m able to go right to Vespers
.

I think that Dr. Latov has given me more hope than anyone that my condition will change. Each visit he asks how I am, and I say, “I’m the same.” He says, “No, you are better.” I didn’t believe him at first. But when I look back to the beginning of the illness, even back to just a year ago, I have to acknowledge it. I am able to attend all the Offices again
.

The tinnitus, for example, has scaled down to something that comes and goes. It no longer affects my pitch; I can sing again, not just silently mouth the words. With the medication, I can keep up with pretty amazing hours. I was able to turn in the wheelchair for a motorized scooter. It was liberating to travel around the abbey property on my own again. Inside, I graduated to a cane—one that Mother Anastasia made for me because she wanted it to be “classy”
.

There is real comfort in the vibrant sensation I feel that tells me the gamma globulin is helping. I remember the day I was accentuating that point with Dr. Latov and actually snapped my fingers. I had not been able to do that for four years!

I could not return to portress duties, but I was asked to take on Mother Mary Aline’s work in hospitality. Her job was to coordinate all the guest relationships. Lady Abbess said it would not be my job permanently
.

—
But a short-term job at the monastery can last twenty years
.

So I became guest secretary, the one who oversees the incoming requests for visits. Because I don’t have the capacity to meet with all the guests, I share duties with Mother Noella and Mother Emmanuelle. Mother Emmanuelle and I read the mail and discern it. I make the “first wave” decision on who is invited; my task is to sniff out the crackpots. Mother Emmanuelle takes care of the replies and, with her taste, expertise and empathy, personalizes them according to what each writer is searching for
.

—
Really, I have been guest secretary in name only. Mother Emmanuelle does all the work. When she made her Final Vows, I asked her to take on the title because I felt it should be on the record. It is her place
.

   How many requests do you get?

I would say between fifteen and twenty a week
.

   Unless one of your old movies turns up on TV?

When
Today
featured us on their Christmas morning show, we were flooded with requests. The same explosion occurred when the article in Oprah Winfrey’s magazine was published, when
The Cheese Nun,
Mother Noella’s documentary, and the HBO documentary on my life as prioress were aired. Lately, people have found us on the Internet. Our website has had a big impact too
.

   Why do people come? What are they searching for?

Many working men and women are looking for peace, quiet, a place to think and pray as a counterbalance to the hectic pace of their lives. Some are seeking solace, guidance, in the face of a particular loss. Some, including young persons, are looking to deepen their faith; others express a sense of estrangement from their faith and are looking for renewal. The younger people are especially attracted to our sustainable agriculture and our emphasis on manual work and seek information about our internship programs. Then there are the women of different ages—but more and more, young women—who want to explore a possible vocation to contemplative life
.

One of the things that we all learn in the day-by-day life of a religious community is how essential it is to be in relationship with others in order to discover our own true natures and to help us recognize what God is asking of us at each moment. On our own, our suffering can be an isolating experience, one that cuts us off from the flow of life. On our own, suffering can lead us to despair. I have been fortunate to have the support of my monastic community and my friends
.