Be Still

by Lynn Baird

I remember that night well. It was the night God spoke to me. I was lying on my hospital bed, crying, and so very, very frightened. How could this be happening? I was praying, talking to God and saying, "I don't understand."

"You've called me to ordained ministry. I'm going as fast as I can to finish my undergraduate degree. My husband isn't real thrilled with the idea at all. What else can I do? And now, THIS! This unpredictable illness - I could wake up any morning and not be able to walk! I might be in a wheelchair in a year, or I might not! It's all I can do to get through a day. How can I keep going when I'm doing all I can and you let something like this happen?"

Suddenly, I heard, as clearly as if Jesus were standing next to my bed, "Be still; know that I am God." Be still. It was not what I wanted to hear…. I had always been a very self-directed person. I liked to do things my way and in my own time. I hated being told what to do and how to do it. Most of all, I hated feeling dependent on anyone or anything. This wasn't what I expected.
Ten years ago, I was going to school full-time trying to complete my baccalaureate in accounting so that I could start seminary part-time. I was healthy and happily married with a preteen daughter. I knew that my husband wasn't keen on the idea of my going into ordained ministry, so our agreement was that after I got my degree in accounting I would work full-time and go to school, even taking just one course a semester, for my M.Div. I was excited, and although I was working hard, my life was satisfying and the future looked do-able. Then things started to happen. Two weeks before Christmas, I noticed that both of my legs felt funny from the knees down.

At first, I attributed it to many hours studying taxation accounting and advanced accounting. But over the next couple of days, the "funny" feeling kept going higher. By the end of the week, I was numb from mid-chest to the bottoms of my feet. I couldn't feel the soles of my feet. I had to walk with my head down, watching to make sure where my feet were. I kept one hand on the nearest wall for balance and for support. And to top it all off, I could not stay awake for more than two hours at a time. By the time I saw my doctor I was panicked. I was an RN, and knew what the likely scenarios might be: brain tumor, spinal cord tumor, multiple sclerosis, or some other equally bad news. Didn't God know that I didn't have time for this?

It didn't take long for my neurologist to come up with a diagnosis. The CAT scan, MRI, lumbar puncture, and EMG testing results, in conjunction with my physical examination, made things crystal clear: multiple sclerosis. With most diseases, doctors are able to give you some idea of how the disease process will progress. With MS, its unpredictability is the only thing that can be predicted with absolute certainty. All that is known is that it is a chronic, degenerative neurological disease that may, or may not, severely disable you. The only way to find out is to wait, and there is no way to foresee when an attack may come.

So it was that I entered the hospital for the physical therapy and intravenous steroid therapy that would help push me into remission. I was still reeling from the news of my diagnosis. And the steroid treatments were given at night, so I wasn't getting any sleep. I was exhausted from being poked for IVs that would promptly infiltrate; my hands were swollen and very sore.

When I went home a few days later, a nurse came to set up an IV system for me so I could do the treatments myself. My husband and daughter were horrified, stunned that I had gone from an energetic person to a sick one almost overnight. My daughter, crying, asked me if I was going to die. I told her no, I wouldn't die unless someone ran me over because I took too long to cross the street, but our lives would probably change.

The cries of the heart, the prayers that cannot even be uttered, are ones that God hears most clearly.

I am grateful that the changes have happened gradually over the past ten years. Some, of course, were immediate. I could no longer go on all-day shopping sprees with my daughter; I sometimes needed to use a cane; I sometimes stumbled and staggered around. It was hard for my husband to see his wife ill; for a teenager like my daughter, I was absolutely embarrassing to be around.

I did finally manage to finish my bachelor's degree. When the time came to job hunt, the country was in a recession, and there were no jobs for new graduates. My plan to work full-time as an accountant wasn't working out. But I went forward, applied to the Eastern Baptist Seminary, and waited. I was sure I was called to be a Baptist minister. I was sure.
My husband flew out to California to interview with Genentech. The day I got my acceptance letter from Eastern Baptist was the day that Genentech made my husband an offer. One of the adages you hear with any chronic illness is "avoid stress." Right. Might as well suggest that one "avoid life."

So, it was off to California: a new house to rent, our daughter starting high school, me not knowing where God was leading me, but trying to trust nonetheless. I discovered the Graduate Theological Union in Berkeley, and was delighted to find that the American Baptist Seminary was the most inexpensive of the schools in the consortium. I knew that going to seminary would be tough. I knew that my life, beliefs, and judgments would be closely scrutinized. What I didn't know is how much the process would cost me, and how the surprise gift from God would change my life.

I began my studies part-time. Let's see: a three-year full-time program and I can do this part-time… that works out to six years. SIX YEARS! And that's not even taking into account the time I'll probably have to lose when I have an MS attack! Argh! I hated everything taking so long.

I had had MS attacks in 1989, 1990, and 1991. Each time, I required five days of IV steroid therapy, followed by a couple months' recovery time before I could resume my life. During an MS attack, I basically have a lot of difficulty walking, a miniscule amount of energy and stamina, tremors, and problems with coordination.

Life moved along quietly enough for the first year we were in California, but given my history, I expected to be due for another attack in 1992. Then, in November of that year, our fourteen-year-old-daughter, Sarah, was badly injured in an automobile accident. She sustained a serious head injury and was in a coma. The prognosis worsened as the days went by.

I called my neurologist to see if there was anything I could do to prevent an MS attack in the middle of all this. His advice: "Try not to get too stressed." Sure, my only child is lying in a coma with severe brain injury and I'm supposed to try not to be "too" stressed by it. I clearly remember praying with my husband after the chief of the pediatric ICU spoke to us two days after the accident. She was trying to tell us, as gently as she could, that we were looking at a long recovery time for Sarah with no guarantee what the final outcome would be. I thought my heart would break that night. My husband and I prayed, saying, "God, we don't understand why this happened. But, we do trust you." There we were, declaring that we trusted God even in the midst of something that screamed that God was not trustworthy. There was nothing at all I could do about my MS either, except trust that God would keep it quiet during the time that my child needed me by her side.

What was very clear was that everything else in my life had to come to a halt. I had limited physical and emotional energy, and it was important to let the nonessentials go. I had to devote myself to what was truly necessary. My nice, organized life plan was in shreds. At the time, I was walking with a cane, and walked quite slowly. I spent the next four weeks at the hospital with Sarah, only going home to sleep at night. Once she was able to walk again, it was important for her to take frequent short walks. We took many, many walks around the hallways of the hospital - going slowly, yes, but going. The MS almost made it into a game, as I joked with her that she was even slower than her mother! By then I had at least learned from living with MS that all one can do is get up in the morning and do the best possible given the limitations of the body that particular day. I'd also learned that even if today was a difficult day, tomorrow might not be.

Together we learned as a family to give thanks for the little things. Each new sign of recovery was greeted with great joy and also with a prayer of courage in case this was as good as Sarah's recovery was going to get. Living with MS for three years had given us some experience with "not knowing" how my life was going to be. Now we had to live the same way with regard to our daughter's life.

Late that Sunday night, when the disciples were together behind locked doors… Jesus came and stood among them. "Peace be with you!" he said, and then showed them his hands and his side.... Jesus …breathed on them, saying "Receive the Holy Spirit! If you forgive anyone's sins, they stand forgiven; if you pronounce them unforgiven, unforgiven they remain.

JOHN 20:19-23

During Sarah's month of hospitalization, I realized even more fully how limited my resources were day to day. It was a time of discovering great grace and God's presence in many people. My husband was my bedrock support. After the first week of crisis, when we were both at the hospital all the time, Bob needed to return to work. I would head out to the hospital first thing in the morning and stay until Sarah went to bed in the evening. Bob would go to work, come to the hospital after work, and then leave a bit earlier than I did so that when I got home he would have dinner ready. Then we would collapse into bed.

I remember especially Marvalee, the mother of one of the boys who had also been in the accident. She brought Sarah's friends in every day to see her. Even though Marvalee didn't know us, except through Sarah, she made herself present and thought ahead to what we might need. She provided rolls of quarters for the pay phones and vending machines the first week; she organized a surprise party for Sarah when she had to celebrate her birthday in the hospital. I don't think Marvalee ever knew what a blessing she was to us, yet by her presence God's presence was made more real and concrete.

It was difficult to pray. I was so worried about my daughter, it was all I could do to even try to read the comics in the paper. Actually, I couldn't pray, but God heard the cries of my heart when words were not possible. I discovered that the cries of the heart, the prayers that cannot even be uttered, are ones that God hears most clearly. It is in that mystery that I learned to put my trust.

After a month, Sarah came home to continue her recovery. I returned to seminary, taking one course in September 1993. In January, my MS surfaced again. I had a couple of months of being slowed down even further, going to the hospital twice a day for a week for IV infusions that took two hours each. I was being reminded again that the disease I had was not within my control and never would be.

I like to see results quickly. I am also infinitely curious about what lies around the next corner. By nature I prefer what will or what might be to what is. God was slowly teaching me what it means not to be in such a hurry. God has been teaching me what gifts there are in being in the present. I wish there were an easier way for me to learn this.

Fast forward to 1999: I have not had an MS attack for six years. I have learned to live with the fact that MS might attack at any time, but things are looking good. For four years I have been on Betaseron, an injectable interferon that somehow reduces the number of MS attacks. I have become an Episcopalian, finished seminary, am looking forward to being ordained, and have a part-time position in my much-loved vocation. I have journeyed through the dying process with my father in 1996, and then with my mother in 1997. Both died in our home. Sarah has finished college and is in graduate school. My husband is well and beginning a new career as a consultant.

Of course, now MS reminds me that although things are peaceful on the outside, the disease process is still going on silently in my brain. It was in July of 1999 that I first noticed that I wasn't able to get through two Sunday services easily. People started asking me frequently, "Are you all right?" Although I said yes, because I really was all right, I knew that these were signs that something was brewing. I waited for the typical onset of an MS attack, but it didn't happen. Some days were better than others, but things certainly weren't progressing as they always had before. I called the nurse at the MS Clinic at UC Medical Center and her reply was, "You're right. It is not an acute attack, but it may be that your MS is progressing. The doctor will see you in a month. Call if things start getting a lot worse."

Things did not get a lot worse. But neither did they get any better. It seems that this is probably my new level of wellness. I no longer have the stamina to deacon at both services; I need to pace myself and my life to accommodate my decreased stamina and energy. Each day I have to plan for some nap time and after five o'clock I'm not good for much of anything. Yes, I have been grieving this new loss and saying to God, "I don't understand this, but I trust you…."

Something very odd is happening - odd to me, that is, but not to God! The less I am able to do, the more fruit I see from my work, even though the idea goes against everything I have been taught. Even though I can only work a few hours a week, God has brought wonderful changes in our pastoral care at St. Gregory's: the whole community is involved.

So as much as I sometimes despair over the gift of MS, I also hold it in my life with great respect. Having this illness has sent me in a direction I never would have imagined. God has placed me here, and together we are learning how to do pastoral care as a community. I still struggle daily with not being able to do all I want to do. I still get angry, still feel discouraged. Yet, I know, deep in my bones, that God is giving me enormous blessing in this journey, though I can't always see it. So, each day I thank God for what I was able to do, trust that God will find ways to take care of the things I could not do, and try to remember God's voice whispering, "Be still…."

Lynn Baird's area of responsibility at Saint Gregory Nyssen Episcopal Church is congregational pastoral care.    



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