Life in the Cocoon
Richard: After being the picture of health for forty-six years, I was traveling in the Philippines with Pamala visiting missionaries our church supported. Upon our arrival I was anxious, cranky, irrational and downright obnoxious. I thought maybe it was mega-jet lag from the long trip. I was a terrible guest for the first few hours and Pamala finally talked me into taking two Tylenol PMs and going to bed. From that time on we referred to this behavior as an "episode."
The "River of De-Nile"
Pamala: I stayed by myself to rest the next day while Richard and the two missionaries went to a small village on the outskirts of Manila. Richard and I had arrived the day before from Tokyo, so I knew he was desperately in need of some good rest too. But I was not prepared for what happened later that day.
I heard the car pull into the drive and the car door slam. Kathy, the missionary's wife, opened the door of the house and said, "Pamala, there is something terribly wrong with Pastor Richard. You need to go help him." The look on her face told me that whatever happened had frightened her. I went to help Richard then, and now, five years later, I am still helping him daily through the episodes that first became apparent on that trip.
When I opened the door and went outside to see what had happened to Richard, he was leaning against the outside wall of the porch. He was deathly white and mumbling over and over, "I have to get out of here; I have to get out of here." I spoke softly to him, while coaxing him into the house and into our bedroom. I tried talking with him, but he made no sense. He was angry, raising his voice, pushing me about and telling me to get him out of this place. I remained calm while explaining to him that we were far, far away from home, and that he must relax and lie down. Still, his agitation continued for the next three days. Needless to say, our missionary friends were confused and concerned. I did my best to excuse his behavior by saying he had been pushing himself too hard back home and he just needed some time off. They agreed, and reluctantly let it go at that.
After three days of solitude Richard was up and running again, full of energy and mentally sharp. He had almost no recollection of the previous three days; in fact, he insisted I was blowing it all out of proportion, and he was fine.
This type of behavior continued off and on for the next year. I could not figure out what caused it or when it would start. He would seem fine, and then suddenly change before my eyes. The changes were dramatic. He would become angry in an instant--upset over everything and anything, with no flexibility at all. He would get a lost look in his eyes. His hands would turn almost white, his arms would hang lifelessly at his side, and his shoulders would slump. He became confused, unable to make even the simplest of choices, like what to choose for lunch from a menu. He became verbally and physically abusive to me. Much of my frustration was that he had no memory of these episodes, and when I mentioned them, he denied them. I actually began to doubt myself.
Before long Richard's bizarre behavior began manifesting itself at work or when we were with friends. I received calls from his staff reporting he had done something out of character. Our friends began asking me if "things" were all right. One day, while we were on an outing with long-time friends, Richard had a full-blown episode. The man driving the car actually pulled over and told Richard to stop his bad behavior or get out of the car. Richard got out of the car. I was crying, trying to explain that something was wrong with him. Our friends knew only that Richard was acting like a jerk. After this I did not accept any invitations for social activities for us; Richard was too unpredictable. Thus my life of "protecting" him began.
Pamala: I started keeping track of Richard's episodes, trying to figure out what would set them off, because until they began, Richard Kennedy was one of the most controlled, even-tempered, steady and kind persons I had ever met. After a few months of keeping track of things, and praying for wisdom, I could finally see a pattern forming. Richard's dramatic change was likely to occur:
I set out to literally keep all of these things from happening to him on a daily basis--at home and at work. I began going to the office with him, even attending meetings, and asking his assistant to keep certain things from happening during his day. But in spite of our efforts, his episodes started getting worse and occurring more often. It became evident to friends and family that something was seriously wrong with Richard. It would be our trip to India that finally convinced Richard that he was very ill.
Nightmare in India
Pamala: The following year we took another trip to visit missionaries. The trip was a nightmare from beginning to end. Remember all of the events that would set off these episodes? Well there was no way to keep situations like these from happening while traveling in a third world country like India. The frustrations of travel provoked Richard into his worse episode we had seen. It was this behavior that would finally convince us there was something seriously wrong.
One evening after a full day of teaching and spending a long evening with the missionary couple, I could see that Richard had reached his saturation point and that we needed to get to our room immediately so he could rest. But he had already gotten too tired and was severely agitated. Once we were alone in our room he began to assault me physically. He held me down with his body, and forced my face into a pillow so I could not breathe or scream out for help. I felt I would not survive this attack, but I prayed for God's help and suddenly Richard came to "himself" and released his hold on me. There would be more times like this in the future--worse times, as a matter of fact--when I would feel that my life was at risk. But it was seeing the bruises from this incident the next day that first convinced Richard something was seriously wrong. By the time we made our way back to the United States, Richard was more than ready to find out what it was.
Richard: I began looking for answers with my family physician and using the referral system of our health maintenance organization (HMO). What a hassle! My compassion level for people dealing with health issues and working within the health "system" immediately skyrocketed. One of my great struggles that first year was knowing that something was wrong with me--but what? It was the source of great anxiety for me, like a constant wrestling match with my own mortality. On top of that was the frustration of feeling that I had to fight with my HMO to get the help I needed. As I'm sure you're aware, in an HMO, each individual has a primary care physician. Rarely is the primary care physician a specialist, so he or she must refer you to various specialists, but the HMO has to approve your visit before you can see the specialist. Often somebody sitting behind a desk declined my referrals--somebody I had never even had the opportunity to meet (and that was probably a good idea!). I can spell HMO another way: F-R-U-S-T-R-A-T-I-O-N. Many of you know exactly what I mean.
Fortunately, my secretary had worked in a physician's office and knew the ins and outs of how the process worked. She asked me to give her my files (which by now had become quite thick). She wrote appeal letters and documented my case. In the end I got every test, saw every specialist, and received every imaging scan I needed. Thank you, Robyn.
I was sent to Stanford Medical Center in Palo Alto, where I was scanned from head to foot in search of a tumor of some sort. The reports came back negative. But my episodes continued. My energy level was decreasing, even though I visited my health club three to four times a week. My moods ranged from anxiety to depression to anger and everything in between. Something was wrong.
A Trip to the Shrink
Richard: Next on the schedule was a visit to a psychologist and a psychiatrist. Somehow I thought seeing a "shrink" was a less-than-manly thing to do. But I must admit it was there I first began to find some relief. The psychiatrist explained about how the brain functions and how various medications could help. Over the next few months, I felt like a laboratory rat. I went through a gamut of medications in attempt to find the right balance. But medications were not a substitute for a diagnosis. We wanted to know what we were dealing with.
Finally I was admitted as a patient at the Medical Center at the University of California at San Francisco (UCSF). I was patient #345-34-58-6. I still have my "blue card." They had a special Memory Clinic & Alzheimer's Center as a part of their Langley Porter Psychiatric Institute. Dr. James Mastrianni was the medical director of the clinic. He was cordial, professional, and among the best in the nation in his field of research. He introduced me to the medical team who would be working with Pamala and me over the next few months in an attempt to give us an accurate diagnosis. This is my journal entry from Thursday, August 28, 1997:
I can't recap the past two to three months, but it has been up and down. It's one day of pain and tears, and a day or two to recover before the cycle begins again. My experiences at UCSF have been frightening at times, but I know (or at least I think) they are going to make an accurate diagnosis. But right now, it's my heart that is breaking and I don't really know what to do for it. Just pray, trust and depend on God. God is doing a work in me; the brokenness is leading to a new level of surrender.
Finally, on October 6, 1997--a year after our distressing trip to India and more than two years since my earliest symptoms had begun--Pamala, our good friend Dr. Lance Lee and I sat with Dr. Mastrianni to listen to the medical team's findings. Dr. Mastrianni got right to the point. He told us I was suffering from the early stages of fronto-temporal dementia.
What is Fronto-Temporal Dementia?
Pamala: The term fronto-temporal dementia (FTD) covers a range of conditions, including Pick's disease, frontal lobe degeneration and dementia associated with motor neuron disease. All are caused by damage to the frontal lobe or the temporal parts of the brain or both. These areas are responsible for our behavior, our emotional responses and our language skills.
Who is affected?
Fronto-temporal dementia is a rare form of dementia, occurring far less frequently than Alzheimer's disease, for example. Younger people, specifically those under the age of 65, are more likely to be affected. Men and women are equally likely to develop the condition.
What are the symptoms?
Each person experiences the condition in his or her own individual way. Typically, during the initial stages, memory will still be intact, but the person's personality and behavior will change. The person may lack insight and lose the ability to empathize with others, and therefore, may appear selfish and unfeeling. A previously extroverted person may become introverted, and vice versa. The person also may become aggressive and easily distracted.
It is important to recognize that these symptoms have a physical cause and are not something the person can usually control or contain.
What kinds of language problems occur?
The person may experience difficulties finding the right words or engaging in spontaneous conversation. They may begin exhibiting problems with circumlocution, or using too many words with too little content. Conversely, there may be a reduction in or lack of speech altogether.
What about later stages?
The rate of progression of FTD varies enormously, ranging from less than two years to over ten years. In its later stages the damage to the brain is usually more generalized, and symptoms appear to be similar to those with Alzheimer's. Those affected may no longer recognize friends and family, and they may need nursing care.
Is it a genetic disease?
There is a family history in about half of all cases of FTD. Some of these inherited forms have been linked to abnormalities on chromosomes 3 and 17.
Is treatment possible?
As of yet, there is no cure for FTD, and the progression of the condition cannot be slowed.
The Crucible and the Cocoon
Richard: I was buried under the load of that information for the next year. Finally, when I was able to get some perspective, I felt compelled to share some of my thoughts with my closest friends. What follows was written on the one-year anniversary of my diagnosis and sent via Email to my closest friends.
For a few weeks now I have sensed the urge to write some thoughts about my first year in the crucible or, as I have come to see it, in the cocoon. These reflections are meant for my friends. I don't want to waste my experience. For what it's worth, I want to share them with you. My word processor and ink jet printer will spit out a neat looking document, but my experience has been anything but neat. Most of the time it has been a tangled mess. God and I are still untangling parts of my experience.
On October 6, 1997, I sat in the office of Dr. James Mastrianni at the University of California in San Francisco to hear the results of hours of testing and the collective opinion and diagnosis of their research team. The news that I was suffering from the early stages of a degenerative brain disease sent shock waves through me that I still feel. Everything has changed since that day. In the words of Sue Monk Kidd, "It's anguish to come to that place in life where you know all the words but none of the music." 1
This is my journal entry from a few days later, Thursday, October 9:
On Monday (10/6) Pamala, Dr. Lance Lee and I were sitting at UCSF waiting for them to call my name and give their team's diagnosis. It was like the words were coming out of the doctor's mouth in slow motion. He said the words, "fronto-temporal dementia." I'm not sure if I heard "the early stages" the first time around. Dementia is a term used by doctors to describe a progressive deterioration of mental powers accompanied by changes in behavior and personality. We were given a 7-page report along with some suggestions about how to change and simplify my life. The emotional roller coaster began (as if I had not already been on one for the past year). Monday afternoon Pamala and I left for a bed-and-breakfast in Santa Cruz. We talked the rest of the day Monday and all day Tuesday. It was her love and care she showed me that somehow gave me hope as I began living my life one day at a time.
My mind has been a constant whirl of activity. I vacillate between heroic thoughts and extreme loneliness. I know I want to do what God has called me to do as long as I can, and as long as I can do it well. I want to build up my family and to make the best possible deposit in each of them with what I have left."
Richard: One noticeable change during this past year [1996-97] has been my reading pattern. For years I have devoured books about the church, leadership, vision and building the new community of God's kingdom on earth. All of that has ceased. Instead I find myself reading the likes of C.S. Lewis, Henri J.M. Nouwen, R.C. Sproul, Phillip Yancey and Sue Monk Kidd. You know, reflective, contemplative stuff. Stuff I didn't use to have time for. God has seen to it that I now have the time.
I have been searching for something to wrap my thoughts around or some framework on which I can connect my collection of feelings. It has come only in recent days. Out of his pastoral care for the Galatian believers, Paul revealed his heart's desire for them: "My dear children, for whom I am again in the pains of childbirth until Christ is formed in you" (Gal 4:19). The word "formed" ( morphoo ) speaks of a change of character and conduct to correspond with an inward spiritual condition. It means the internal essence rather than the outward shape. The idea is therefore of real Christlike character. Whatever else God is doing, He is forming Christ in me. Most of us, including me, prefer the sudden and painless paths to change and growth. But in creation, God has left us a number of examples of the sacred rhythm of spiritual transformation.
Richard: Long before a butterfly became a butterfly, it was a caterpillar. And in God's time it spun a silky cocoon or technically, a chrysalis. The transformation takes place in the chrysalis. That's where the fuzzy little creature grows its wings. Borrowing this metaphor from the writings of Sue Monk Kidd, it is this image of the chrysalis that God has pressed to my heart. This is the analogy I have searched for to make sense of my many emotions and reflections. For the past year I have been in God's chrysalis. It wasn't my idea. I went in kicking and screaming, and I'm not out yet. I have just now gotten still long enough to listen to God's voice. As I reflect on the past year, I see I have gone through a number of stages, or phases, for lack of a better term. So far I have counted seven. Let me see if I can describe them.
In the first stage, I was overwhelmed by the darkness. As a kid I was unapologetically afraid of the dark. That was before the days of Motel 6 and "We'll leave the light on." On top of that, I have always been a bit claustrophobic. As the lights went out in my world, I could almost feel the darkness. At times it was suffocating. Maybe King David was faced with his own mortality when he wrote, "You have taken my companions and loved ones from me; the darkness is my closest friend" (Ps 88:18, emphasis added). I don't think it has been the sheer blackness that bothers me most, but the inability to see beyond the immediate, the inability to chart my course. Life in the chrysalis is dark.
Even more pronounced than the darkness has been the sense of grief, the second phase of my journey. The news that I am going to die shouldn't be that alarming. Dying is a part of living. I just always thought I could die on my own terms. Stupid, huh? Right now, at least, the grief has been related to the premature end of my ministry career. I was just reaching my prime, just reaching full stride.
No doubt some of the feelings of grief have been due to my unwillingness to stay in this cocoon. For months I have felt more like I was being wrapped for burial than I was entering a cocoon. I don't feel like I have finished my course; I don't feel "done." To add grief upon grief, I feel my own farewell to my ministry has been cut short. I had my last sermons written, but I didn't get to deliver them. I didn't get to take my victory lap. For now, I have had to give up my victory lap. And to top it all off, I grieve over thinking about leaving my family.
A third stage in the chrysalis has been the sense of aloneness. I started to write loneliness , but I think aloneness is a better description. Pamala, my kids and my special friends have saved me from loneliness. Aloneness is the sense you feel when you are being wheeled away into surgery and everyone else must stay behind in the waiting room.
Part of the prescription that helps me function more effectively these days is a quiet environment. I have learned that aloneness is the price of that quietness. I was never one to sit still for long, so to have long periods of time by myself has been a difficult adjustment. One temptation I have had to avoid is relying on Pamala or my children to meet all my needs. The truth is, no other person can meet all of your needs. Recently I read this insightful comment: "When I lose sight of my Father/child relationship with God, I begin to look to others for more than I should. I start thinking that they are the ones who should bring me freedom, happiness and meaning. When I stop hearing God tell me that He loves me, I begin looking to others for a depth of love and affirmation that they aren't able to give." 2
We each have to trust God and find our way through situations and circumstances that, often, no one else understands. I don't pretend to be a lepidopterist (a butterfly expert--OK, so I looked it up) but I don't think they make chrysalises for two. They are all single-seaters.
A fourth struggle has been the nagging question of "How long?" I'm neither the first--nor the last--to ask that question of God. No doubt it stems from my unwillingness to enter the chrysalis in the first place. "Haven't I already been transformed?" I ask myself. In predicting His own death and resurrection Jesus told His disciples, "Unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds" (Jn 12:24). Perhaps there is a secondary application here in my situation. No doubt accepting the invitation to take up our cross and follow Jesus will mean spending some time in the chrysalis.
A fifth and predictable phase has been my struggle with the question, "What's ahead?" I don't want to misrepresent things at this point. I neither doubt nor have the assurance that God will heal me. I don't know that I will emerge from my cocoon to fly again in this life. But I do know that I will emerge. It may be to soar into God's presence or to continue my journey here.
A sixth struggle that recurs on a regular basis is my desire to escape the chrysalis. "What Houdini-like move can I put on my situation that will get me out of these chains?" I have always been a problem solver of sorts. Figuring things out has been my specialty. I have wanted to escape for all the reasons already cited, but I am coming to terms that there will be no escaping this cocoon. Only when God has finished His work in me will He lead me out. Sue Monk Kidd notes, "The escape hatches people create in attempts to avoid or numb pain can actually be worse than the experience of pain they sought to avoid in the first place." 3
A way of escape was at the top of Jonah's prayer list, too. "The currents swirled about me; all your waves and breakers swept over me. I said, 'I have been banished from your sight' ... the earth beneath barred me in forever" (Jon 2:3, 6). A panic-stricken Jonah realized there was no way out unless the God who prepared the fish also prepared his escape.
The last stage to date has been the place of waiting. I have always boasted lightheartedly, "I don't do waiting." I have always been the kind who would eat dessert first. But God is showing me that my inability to wait is symptomatic of something amiss in my soul. Once again I share from the writing of Sue Monk Kidd: "When it comes to religion today, we tend to be long on butterflies and short on cocoons. Somehow we're going to have to relearn that the deep things of God don't come suddenly. It's as if we imagine that all of our spiritual growth potential is dehydrated contents to which we need only add some holy water to make it instantly and easily appear." 4 Ouch!
Disney World in Florida is sensitive to America's extreme resistance to waiting. A Disney employee was heard to explain that the lines to the attractions were looped and snaked to give the feeling of movement. The worst thing, he pointed out, is to let the crowd stand still. "All lines must keep moving," he said. "That's rule number one." The secret is to divert people so that they don't realize how miserable they are standing there waiting.
To me, waiting has always been a waste of time, a lack of progress, a reflection of somebody's lack of responsiveness, or the result of the "power trip" of somebody working behind a counter. I have skipped so many waiting lessons that God has decided it was time to for me to attend a crash course. George Fox called this ability to wait on God as "stayed-ness." Another has said, "When you're waiting, you're not doing nothing. You're doing the most important thing there is. You're allowing your soul to grow up. If you can't be still and wait, you can't become what God created you to be." God says, "Be still, and know that I am God" (Ps 46:10).
Time waiting can be time well spent. God is teaching me at least four things about waiting:
1) Waiting is time to reflect on God's promises . I have found it helpful to print out a list of passages from the Bible that reflect God's promise to accomplish His work in me. While I own several Bibles I can read at anytime, I have found it helpful to have those promises handy.
2) Waiting is a time to be joyful in hope. One of the screen savers I have put on my computer displays these words of Paul: "Be joyful in hope, patient in affliction, faithful in prayer" (Rom 12:12).
3) Waiting is a time to develop trust. Trust may well be the believer's most important lesson. Trust is both tested and developed in the chrysalis.
4) Waiting is a form of submission . Submission to the Father is one of the richest qualities of a Christlike life.
Richard: The place of waiting is hard to describe, much less experience. Maybe it is best captured in what the Chinese call wu wei . It is an attitude of expectant beingness--a non-doing or actionless action that, as Thomas Merton described, "is not intent upon results and is not concerned with consciously laid plans or deliberately organized endeavors." 5 Wu wei is the opposite of conquest or conscious striving.
My first year of illness has left me with the understanding that my crisis is a point of separation. The word "crisis" derives from the Greek words krisis and krino , which means, "a separating." A crisis is a holy summons to cross a threshold. It involves a leaving behind and a stepping toward; a separation and a moving forward. The question I am faced with is, "What do I need to separate from and what needs to be left behind?" I only know part of the answer. That's what leads me to believe I still have some more time to spend in the chrysalis.
Crisis is also a time of opportunity. The Chinese word for "crisis" is composed of two characters. On top is the sign for danger ; beneath is the sign for opportunity . This has been a time for me to "get still" so God can do His work. Getting me still hasn't been as simple as flipping a switch, but more like wrestling an alligator. But God has prevailed. I have always clung to God's promise: "He who began a good work in you [me] will carry it on to completion until the day of Christ Jesus" (Phil 1:6).
There's an old Carolina story that I like about a country boy who had a great talent for carving beautiful dogs out of wood. Every day he sat on his porch whittling, letting the shavings fall around him. One day a visitor, greatly impressed, asked him the secret of his art. "I just take a block of wood and whittle off the parts that don't look like a dog," he replied. 6
Simple, but a good example of what God is doing in me. Pray for me, that I will embrace the full force of this opportunity to be more like Christ.
How Do You Spell R-E-L-I-E-F?
Pamala: Richard was devastated by the news Dr. Mastrianni gave him that day, but my first emotion was relief. I was exhausted from the hide-and-seek game we had been playing for the past two years. Hiding the fact that Richard was ill, and seeking and seeking and seeking to know the cause.
However, this was just the beginning. We will share our journey in the pages that follow. We will use words to describe our journey but if you are reading this book because you or someone you love is hurting, you know mere words are not always sufficient. We have most definitely suffered physically, but the emotional toll has been far more devastating to our family. We have developed our own survivor skills, and we want very much to share these with you because we do not want our pain to be wasted. This Scripture verse means a great deal to me: "God of all healing counsel! He comes alongside of us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us" (2 Cor 1:4, 5, The Message ).
We want to use our experience to comfort you and give you hope.
For Group Discussion:
1. Take 3-5 minutes and share your story with the group.
2. Of the seven stages of life in the cocoon (darkness, grief, aloneness, How long?, What's ahead?, desire to escape and waiting), how would you describe your current state of being?
3. Since God uses circumstances to form us, what changes can you identify as God working in you?
1. Have you practiced the art of wu wei lately? What steps can you take to develop this discipline?
2. How would you answer the question, "What do I need to separate from and what needs to be left behind?"
3. Meditate on Philippians 1:6.
Just For the Caregiver
Few people understand the load that a caregiver shoulders daily. Can you name at least one person you can to talk with on a regular basis? If not, take time this week to list people who could possibly fill that role in your life. Then plan time with them soon. Keep it simple, but be sure to open up and share your heart with them.
From Suffering in Slow Motion, © 2003 by Pamala & Richard Kennedy. Published by Regal Books, 1957 Eastman Ave, Ventura, California, 93003. Used by permission. All rights reserved.