OUR MINI-MOTORCADE MADE its way across Boston, moving slowly down Longwood Avenue toward the main quadrangle of the Harvard Medical School. No pomp or pageantry carried us, only a handful of taxis and one disability van equipped for a wheelchair.
Everyone was a bit nervous. Moving from home to Harvard had been a leap of faith. The five principals had met for the first time for dinner at the Harvard Club only the night before. Together we broke bread and plenty of ice. And the dialogue began. The meal had been a rehearsal. The big show waited across town.
Our entourage had splintered almost as quickly as it formed this afternoon. Cars and cabs, buses and assorted commercial vehicles, roaring through Boston’s old streets had cut into the group and carved it up, leaving us in pieces.
What was left of our caravan drove past hospitals and labs and slowed as we approached the medical school complex. The place was impressive, looking very much like the separate city it is.
I had wished that we would all cross the main quadrangle together on foot. The setting was stirring, but walking was out of the question for Denise and Ben. Stones and steps and mere distance put the trek out of reach for me, too.
We had spent the morning gathered around a grand table at the Harvard Club. With rolling audiotape our only witness, we shared experiences with an intimacy and candor that seemed unusual for relative strangers. Crumbling health provides a powerful common denominator for individuals whose only connection is sickness.
Now we were going to share our difficult lives with the next generation of doctors. Medical students, with faculty and guests in attendance, would bear witness to five individuals with chronic illnesses swallowing hard and revealing themselves. Such exposition was new at Harvard, we were told, which was news to me.
We entered a back door and, in short order, walked into the well of a large amphitheater that was more vertical than horizontal. For all I knew, this might have been where autopsies once were performed in this mysterious institution. Or was that only in old movies? Perhaps this was an apt metaphor for individuals preparing to put private parts of their lives on the table and into public view.
A young medical student read portions of the preface to Strong at the Broken Places. “These are faces of illness in America,” she intoned. “Do not look away.” The five participants sat straight and nodded, looking at one another and hearing those words for the first time.
They stared in anticipation. Their families sat on stools in a narrow space behind. All spoke of the hurdles before them, openly, sometimes emotionally. These five individuals were playing to a packed house. And they were there for the right reasons.
These unassuming folks—folks is exactly who they were—had arrived in Boston in search of something very different: community. Solidarity derives from connecting with others traveling the same road. Instinctively each recognized that their chorus produced power beyond any solo. These folks were at Harvard now, and they were in charge.
As always, their stories were authentic. I felt so proud of them.
“Sarah,” I began, “a long time ago you described yourself to me as ‘defective.’ I know how much you meant that, but you have always looked to others to define normalcy.”
“Who knows what normal is?” she interrupted. “I look at my peers, my friends, and I feel like I am less of a person than they are because of this disease that I carry with me every day. I do feel defective.”
“You are a successful woman, but still that is how you see yourself?”
“I see myself as, I guess, not a whole me. I am not a whole person.” Silence sounded. Sarah became animated. “I have to defend myself, and I am sort of a broken person.”
“But defend yourself against whom?”
“The world,” she answered.
Buzz nodded. “Yes, it is the world. Everyone looks for perfection. You are supposed to be this way or that, and then it turns out, you are not.” He looked across the audience. “You are ill. There are days that I cannot get up. There are days I just feel like crap. Yet I have got to go on. I’ve got to prove to them I am going to do this. I am going to get up, and I am going to walk forward and not look backward.”
“Is that about proving something to others or proving it to yourself?”
“For me it is both. You know, I am not going to let this defeat me. I am going to defeat it.”
“Is there a goal in that?”
“Yeah,” Buzz answered. “Every day is a goal. Every day I wake up is a positive. It is good for me.”
“People do not get that, do they?”
“No,” Buzz answered instantly. “No one is supposed to be ill. I mean, in the perfect society there would be no illness. But here we are.”
“Don’t people accept that?”
Buzz scoffed. “We have friends who do not come around us because I guess they are fearful of getting it. I say, ‘You cannot catch it. This is not something you catch.’”
Ben spoke up. “I want initially to prove things to others and to myself. I have to go through every day saying, okay, how am I going to do this? Am I going to be negative? Am I going to be mean to people? Because, in fact, most people I come into contact with are nice.”
“I believe there are dimensions to chronic illness that are just miserable,” I offered. “There is nothing sexy about chronic illness. Women die of cancer with great flair on the silver screen all the time. But the slow suffering of chronic illness is the anti-Hollywood. Even if it’s treatable, it just plods along, unresolved, incurable. It rules our lives. Does anybody relate to the idea that we just become our illness?”
“Yes. I do,” Denise yelled out in her slurred voice. “Of course, ALS has totally changed my life. I was diagnosed in the last five years, and it is all that I do, everything I think about. I take a step. Do not fall on your face. What am I going to eat? Oh, it has to be soft with gravy. How am I going to get in a car? Who is driving? How can I go to the market?” At this point, Denise had to pause just to breathe. “This is everyday life,” she wheezed.
“This is the hidden daily burden of sickness,” I told the audience. “It is the small stuff that gets you. What doctor asks about that?”
“I will have days when I say having this disability really sucks,” Ben said suddenly. “But I guess I really have not resolved my feelings.”
“Are you resigned to a limited life, to accepting all the things you cannot do?”
“There are always going to be moments where you’re like, why am I even here?” Ben seemed focused. “Why am I even bothering to try? But that is just setting yourself up for failure, screwing yourself up. I think no matter how bad your condition, that even the smallest element of a positive attitude can get you through things.”
“Do you agree with that?” I asked Denise.
“Oh, yeah,” she said in that breathy voice of hers. “Even just a little bit of hope or a moment of fun can make me happy. I believe in fun, and being happy. And having purpose keeps me going.”
“Do doctors understand the therapeutic value of those things?”
“Some understand.”
“Is it important for a doctor to understand?”
“Hell, yeah, it matters. That person is a better doctor for understanding how the patient feels.”
“Sometimes you have to put your own sickness away,” I said. “Ben, I used to go for days without remembering that I have multiple sclerosis. Do you ever forget that you live with muscular dystrophy?”
“I would have to say, I am consistently aware of it,” he responded. “There is not a minute or even a second that goes by.” He paused. “Well, probably a couple of seconds, but I guess there is always a moment every part of your day where you think, okay, I know I am not normal. Then you just go on with your day.”
“So you left for college and moved away from the security of everything you had grown up with. How did you feel about dealing with new people?”
“I became introverted because I was scared,” Ben answered. “Basically, I did not know how other people would perceive me.”
“What were your fears?”
“Here I am, young, black. In a wheelchair. I am like, okay, there is a double whammy in terms of minority status. Not only am I African American, but I am also in a wheelchair, and I am trying to balance those two out. How am I going to cope with being a double minority in this college setting, away from home, without the familiar support systems I am used to? I am going to have to forge and create new ones.”
“Fears surrounding how others are going to see you must be powerful, especially for young people. Sarah, your years of treatment with powerful steroids for Crohn’s took a toll on you, physically and emotionally.”
“When I say I feel like a defective person, it’s because my whole GI tract is defective and not normal and because of the side effects from taking steroids.”
“Which are?”
“I have a round face,” Sarah said unemotionally. “Sometimes I feel I am defined by my looks. I always wonder if other people notice or think to themselves, why is her face so round? She is a very small, petite person. Every time I look in the mirror, that’s the only thing I see, is my round face.”
“All of us can see a caricature of ourselves staring out from the mirror. That cartoon character is manufactured in our heads, isn’t it?”
“Except that society buys into that view of us without resistance,” Larry said, referring to mental illness, “and then we own it.”
“True. Sarah, you look like you are ready to explode.”
“That has always been an issue for me. When I was younger, people used to say to my parents, ‘Oh, my gosh, what is wrong with her? What is wrong with her face?’”
“Was that just when you were little?”
“No. Throughout high school I would have people look at me and make comments, not knowing what a touchy subject it was. So that definitely, with my physical appearance, has been a huge thing for me. Having the added stress of the physical side effects of medication is that every day, every second, I am reminded that I am defective.”
“Denise, do you agree with Sarah and Ben, that the world sees you as a caricature of yourself?”
“Absolutely. It is true. People have misconceptions,” Denise said clearly. “We upset the apple cart by being ill. This cannot be reality. People do not know how to deal with us. Who is asking them to deal with anything?” she asked rhetorically.
“Larry, correct me if I’m wrong, but your mental illness probably provides the greatest opportunity for people to caricature illness. It must be like whiplash. You struggle to know who you are and to feel good about yourself. At the same time, people are coming at you like you are from a science fiction movie.”
“Yes, but there are good things that come out of the experiences, too.”
“What?”
“I think we have a greater opportunity for transformation when we have dealt with something life-changing like living with a mental or any other serious illness.” He gestured to his right. “A great example is Ben,” he said, turning to look at the young man. “Last night, I went into the restroom, and realized you could not have used that restroom.” All eyes turned to Ben. “Yeah,” was all Ben said, slowly nodding.
“Before I had my illness,” Larry continued, “and before I began to grasp how people with disability are treated, I would not have had that insight or that awareness. But my feeling is, you know, I ain’t goin’ anywhere Ben cannot go.” Larry wore resolve on his face. “I ain’t goin’ anywhere Ben can’t go,” he repeated for emphasis. “I feel the same about the rest of you. I just don’t know you as well. I talked to Ben about a lot of this stuff last night. We are linked on that.”
“Larry, you look for the good in any bad situation.”
“When you have these experiences, you start to realize that diversity is actually very much a growing experience, and hanging out with people who have had these experiences has created some of the greatest moments of my life. I would not give back those moments.”
“But moments are not always so great, are they?”
“I have a lot of positives in my life,” Sarah conceded, “but it is inevitable that, for me at least, I am going to have times where I say, ‘This just really sucks. Woe is me. What good is there in my life? I am this defective person. Who is going to want me? Who is going to want to marry me? I am a burden on my family, on my friends.’ It brings you down.” (Sarah could not know her life would change a year later and she would have her answers.)
“Of course,” I halfway interrupted, “you know that none of that is true.”
“Yes.” Sarah laughed. “I do.”
“But that does not matter, right?”
“It does not.” Sarah paused. “As I have said before, I have become a self-deprecating person.”
“This is common among the sick because, somehow, we decide the disease is our fault.”
“Yes,” agreed Sarah. “Sometimes it is hard for me to accept that these things are not true.”
“Denise, can you describe how the reactions of others to your evident disability have hurt you? You said you wanted to look sensational for this meeting and seminar. How does that fit in?”
“Absolutely. I did,” she exclaimed. “People do not look at me as a female anymore. They see me as a woman on a walker, someone with a terrible disability.”
“You mean, the disability is all they can see?”
“Right. That is the beginning and the end,” she said. “And why would they want to get involved with someone who is so sick, especially when there are so many healthy people.”
“Should they give it a chance with you?”
“Why bother?” she answered curtly. “I am dying.” Denise was abrupt. She continued. “They see the walker and wonder how old I am. Then I speak, and then they are very curious as to just what I have been drinking. Then they really look at you, like, ‘Oh, my gosh. She’s already had the best years of her life.’” In a healthy world, we can be written off very quickly.
I was struck by the silence in the amphitheater. Faculty and students were moved by the obvious strength of the participants.
“I constantly feel like a burden to everyone,” Sarah said to the assembly. Illness conflates with guilt, especially in the young. “I am always apologizing to my friends if I have to cancel plans or end a night early, whatever, because I just feel run down. That is one thing that I am always apologizing for with my peers and people that I work with. With my family, I have this tremendous feeling of guilt that since age four, I have been this huge burden to them.”
Joan, Sarah’s mom, objected strongly. “I have never for one day or one moment thought, I wish I had a child who was perfect, because I know young women, and there is none who is perfect. They all are flawed. Girls have difficulties, and I think girls especially are hard to raise. But Sarah was no harder to raise than a girl in good health. Sarah is a normal young woman.”
“But, Joan, we have talked about your relationship with Sarah, which is a close relationship and greatly affected by her illness.”
“That is true. From the moment of Sarah’s diagnosis, I was a very controlling parent.”
“Was that just because you are that kind of person, or was it the medical circumstances or both?”
“I think that the circumstances demanded control, and my husband is a very articulate, very bright person, but he falls apart in a medical situation. He is not able to cope. So somebody had to cope, and that was going to be me. So in that way, I kind of felt I had to take control.”
“The biggest control issue for me,” Ben said, “was making the transition from walking to being in a chair permanently. That was basically a big step for all of us.”
“Ben, why do you think your folks pushed for the chair?”
“My parents did not want me to collapse anymore. But I was reluctant, I guess, to use this power chair.”
“Why?”
“Because there are certain stigmas associated with people who use power chairs. I was neglecting to control myself,” said Ben, looking up and out at the students. “My parents were trying to teach that to me, saying, ‘Listen, you have an ability to go out on your own and do your own stuff. You talk about control. Well, actually, practice what you preach.’”
“Control is a powerful issue with sickness, isn’t it?”
“For me, as a man, it is large,” Buzz said. “For patients I deal with at hospice, it is the same thing.”
“Meaning?”
“We do not feel useful in our family’s life.” What about losing control over your own body? “Losing that control is just awful,” Buzz added. “I was constantly throwing up. I had no control. That was the worst experience.”
“How did it make you feel?”
“I felt defeated. I could not control my bodily functions.”
I wonder if doctors understand the psychological burden of losing control, and if they would care if they did understand. A physician once told me that he wants to provide the best science he can, making clear that he has little interest in holding a patient’s hand.
“Do doctors understand that when absolute control is gone, the struggle to hold on to some form of power can mean so much to the sick? Even our own families may not get it.”
“Oh, yes,” Buzz quickly responded. “This is what my family copes with, twenty-four/seven.”
“Buzz, does Susan get it?”
“No. Not always. She cannot know.” Buzz stopped. “People are different. They cannot always understand everything. When I am working at the hospice, I never say, ‘I know how you feel,’ because I do not know. Imagine the loss of control there. Nobody really understands, and I do not expect Susan to. She cannot.”
A man in the audience took the microphone to address family members directly.
“I think it was Buzz who said that it’s not your disease. It is your family’s disease. Could you talk about to what extent that is a common theme, and how you approach it?”
Sarah’s mother, Joan, spoke first. “Since Sarah has been ill for most of her life, we really do not know what it would have been like to raise a child who was not ill.” Her voice tightened. “I think that you have to make it your mission, and you have to be your child’s advocate every step of the way.” She continued, “We were given words of advice early on by a pediatric gastroenterologist, who said, ‘You can take this child home and make her an invalid, or you can take this child home and make her everything she can be.’ That was really the guiding principle of Sarah’s life.”
Debi, Ben’s mother, took the microphone from Joan. “I have to echo what she just said. Ben was diagnosed with muscular dystrophy at three, and we got all the facts and figures, and what to expect. My husband and I sat, and we talked, and we made a decision. It was going to be all about quality of life for Ben.”
“Meaning?”
“We made a conscious decision that he was going to have a normal life. We were not going to coddle him, because in our minds, he was going to grow up to be a young man. He was going to go into manhood, and he had to have the skill sets that he would need to function.”
“Do you guys think of yourselves as strong people? To others listening and looking at you, you do project strength. Ben?”
“To some degree, yes,” he responded thoughtfully. “I guess I’m more of a humble person than that. I do not want to brag too much about things.”
“You can be strong and humble, Ben. John Wayne pulled it off.”
“Well, I am not John Wayne by any stretch of the imagination,” he said, flashing a broad smile. “Yeah,” he added. “Elements of strength separate me from others. But at the same time, I think everybody may have a particular situation that is tough for them but easy for others, whether we are disabled or not. It is not only about disability. I believe that everybody’s strength is relative. It is what they make of it.”
“Buzz, has cancer made you strong?”
“Stronger,” he corrected me. “I have learned to be stronger. I have learned to take charge. Instead of cancer defeating me, I’m going to defeat the cancer. That is the attitude I have to take. We have run across…” Buzz looked up into the seats above. “How many of you are studying to be doctors?” A multitude of hands went up. “Okay, this is what a doctor should not do. I will tell you this flat out. I was extremely, extremely ill. I had driven myself to the hospital, crawled into the cancer center, and crawled up to the desk. The woman there could not even see me. She just thought this voice was talking to her. But I was on the floor.” He started to describe what happened next, but backed off, asking his wife, Susan, to pick up the story.
“I work in the ER,” Susan began, “and they called me and said that Buzz was really sick. In a matter of minutes, I got there, and Buzz and I started talking about what might be going on and about our son. I started crying. The doctor came in and said, ‘This is nothing to cry over.’ When I get mad, I cry more, so I cried even harder. And he said, ‘Like I said before, this is nothing to cry over.’” The look on Susan’s face as she told her story said it all.
“I wanted to say, ‘You do not even know me,’” Susan said in a shaky voice. “I did not say that. I did say something to one of the nurses, and she said ‘You need to tell the administrator of the cancer center.’ Later, this doctor came back groveling, and he said, ‘If you need anything over the weekend, you let me know.’”
Susan looked up. “Buzz, as sick as he was, lifted his head, turned, and said, ‘You would be the last one we would call.’” Buzz smiled at his Harvard audience. “There was a time when I never would have said that.”
A woman in the amphitheater spoke up. “This is a question for Buzz, Sarah, and Larry. I was wondering if you feel you have faced any additional difficulties with your illnesses that to the outside world are not visible?”
Sarah began. “A great example of that is my first job out of graduate school as a social worker. I was going through weekly transfusions and iron infusions. I lost my job. Obviously they did not say that my Crohn’s and all the side effects were why I lost the job, but I was missing a lot of work. It was obvious.” Sarah continued. “Because of the steroids, my face was full, my cheeks red. I looked healthy. People just think, oh, she gets stomachaches a lot. Go take some Tylenol. That is not how it works.”
“We fight our illnesses,” I said, “and we do battle with so many of the people in our lives. The indifference of others, coupled with the stigma that people attach to physical imperfection, doubles the difficulty of living with illness. Larry, I have to believe that of the illnesses represented around this table, mental illness is stigmatized most. Maybe in our history of discrimination, there is little difference between the M word and the N word.”
“There might be some disagreement there,” Larry responded. “I will say that there is no illness except maybe leprosy where patients are lifted up and removed from the community.” He pointed out that as he grew up, his church prayed for the sick but not the mentally ill. “We suffer in silence.”
“I have not walked in anybody else’s shoes,” he said, gesturing to the others in the amphitheater as well, “or been in their wheelchairs, so I cannot really speak for them. But I would suppose that what adds to the stigma of those of us in recovery from mental illness is the element of forced treatment.”
“Being committed,” I said, “and locked up.”
“I don’t think anyone else here would ride to the hospital in the back of a police car. That is kind of a disempowering experience, when you are in the back of that police car and you yell to your neighbors, ‘Hey, I got to get to the hospital. Feed the dog. Don’t know when I’ll be back.’”
I glanced around. Everyone was staring silently at Larry. “There is the fact that we are still segregating people in institutions,” he continued. “I mean, it’s not over yet, folks. We have people in those institutions in Georgia that have been there almost all their lives.”
“If there is a common thread binding these five, it is their dissatisfaction with the doctors in their lives. Do you think that the stigma attached to mental illness is made worse by doctors?”
“I think the good docs would even acknowledge that.” Larry answered.
“Oh, yeah,” Buzz agreed. “I understand what Larry is saying. The doctors do not live it every day the way we do. As far as some of them are concerned, you are your stigma. You know, with Denise or Ben, you see the devastation. Mental illness is in the shadows, maybe where cancer was twenty years ago. Doctors set the tone.”
“I had internalized the hopelessness,” Larry told the group. “If you were to ask a group of clinicians what disables people with psychiatric illness the most, they would say the symptoms. If you ask us, most of us will say it’s the stigma of the disease and the poor self-image that results. That is more disabling.” Symptoms can be controlled by drugs and therapy. Stigma runs rampant in the minds of others.
“I do believe that doctors bear some responsibility for creating the attitudes that we all bring to chronic illness. Buzz had told me long ago that he had been stuck with one doctor who could not look him in the eye because of his admitted discomfort.”
Larry’s wife, Grace, took the idea of discomfort to a new level for the medical students. “As the spouse of a person with mental illness, I have to say that many times people who know that Larry has bipolar will turn to me to answer questions for him or act as if he is not even in the room.” Grace spoke carefully to the students. “So, as a spouse, I have to learn how to step back so that the person himself, in this case my husband, is pushed forward and speaks for himself.”
I jumped in with a similar experience. “My wife and I went to a religious service, and she was parking the car. I walked into the back, and the usher stared at me. She did not come over. She saw the cane. She kept staring at me. I stared back. My wife came in, and the woman immediately walked over and asked, ‘“Where would he like to sit?’” The murmuring told me the audience got it.
“This stuff happens,” I continued. “This is not just about mental illness. It tells us how other people see all of the sick. I was at Amtrak in Washington, waiting to get on a train. An agent came over to prepare and open the gate. She said into her walkie-talkie, ‘“I have three canes here. I am going to board the canes first.’ So I started to hand her my cane.” Uncomfortable laughter sounded around the amphitheater.
“We are objectified, and these kinds of experiences become daily occurrences in our lives. And we all know it. Eventually we become accustomed to the insensitivity of others. Gradually, we think less of ourselves, and expect rejection. Ben, how do you respond to that?”
“I have realized that a lot of that stigma was inside of my head, that I imagine the worst thing possible as absolutely occurring.” He was talking about female friendships. “In fact, there are plenty of young women who are some of my close friends in college, whom I talk to a lot, eat with and hang out with.”
“And what have you learned?”
“I realized that basically it was up to me to actually put myself out there, to discover what people are really about, which is that I think most people are inherently good.”
“That took a while, didn’t it?”
“It did.”
“Did you get help?”
“Yeah, but you got to do it yourself.”
Larry pointed a finger at our group to make a point about stigma. “Last night at dinner, people made comments about insanity and it was humorous, but is that something everybody should laugh about?” He was looking at me.
“Larry, you use humor and make jokes yourself to make people comfortable with you.”
“Absolutely,” Larry responded. “What I worry about,” he continued, “is what I call the soft discrimination of low expectations. I was a journalist. I owned a business once, but I am often confronted by people who expect nothing from me. I think I am fortunate that there are times when I am just doing really well, and have learned to manage it.” It can be tough to demand of yourself when others expect so little.
Then came a question that each of the five chose to address. “To what extent did you seek out or were you sought out for support by different social groups or nonprofits that deal with your disease, and what, if any, were those experiences like for you?”
Ben spoke up first. “My parents said, ‘Okay, we are going to try and do something about this and be as proactive as possible.’ I am real fortunate to be able to work with folks from the Muscular Dystrophy Association. MDA has been there time and time again. I am more than satisfied and very grateful.”
“Denise, more than once, you said to me, ‘I was an unhappy person before I got ALS, and that changed.’ On the face of it, that sounds, well, weird.”
Denise giggled. “When I was diagnosed, for about eight months I really did nothing, ended my job, and a friend got me involved with the ALS Association Greater L.A. chapter. I started volunteering and hanging out and writing letters in the quarterly paper, speaking at seminars, at schools. A year and a half ago, I was asked to be a Board Trustee. They are my saviors.”
“That changed your identity, didn’t it?”
“Yes. Advocacy gave me an identity. I am far more at ease with the disease, because I know what is going to happen. I am an advocate. I see my future, and I live life every day until I cannot move. That is why I went to Antarctica two years ago. Now I could not go. With their help, I keep pushing myself. Last year, I did Paris with a cane, took thirteen trains a day, walked down every step. Now I cannot.”
“Buzz, you said you felt used by one advocacy group.”
“They just wanted to use me as their poster boy. Then I came to find out that only thirty-three percent of the dollars there go to research. Everything else goes for salaries and such things. Where is the patient in this? Where is the research? Do not showcase someone like me and say, ‘This is for research’ when it is not. I pulled away and now I am working with the Leukemia and Lymphoma Society.”
“I am on the boards of two very good organizations,” Larry told the group. “The National Mental Health Association, and the Depression and Bipolar Support Alliance, with more than one thousand support groups across the country. I think they are making a difference.”
“I have had an incredibly positive experience with the Crohn’s and Colitis Foundation,” Sarah chimed in. “When I went away to college, I had an amazing doctor there who was very involved in the CCFA, and hooked me up with the Greater Atlanta Chapter. I was asked to speak in my freshman year, and then I volunteered at a camp that’s offered for kids with Crohn’s disease and also colitis. I became their poster child. I created a camp in Cleveland for kids with those diseases. I have had a great experience with them.”
“I think advocacy for all of us is all about taking ownership and allowing illness in. The terminally healthy may not recognize the significance of that step toward making peace with ourselves. Those of us who have grappled with our demons and the cold world recognize the distance of the leap toward self-acceptance.”
A member of the audience provocatively suggested that advocating for changes in the workplace or in public places could be interpreted as the sick asking for handouts. There was silence. “I do not speak for anybody here,” I said, “but I do not think that is what we are talking about. Those who suffer from chronic illness are not begging for special consideration. We ask only to be treated with the same respect and similar opportunity as everybody else.”
What grabbed everyone’s attention was something Denise said about my own long struggle with multiple sclerosis. “I do not want what you have.”
“Excuse me? Denise, you have ALS.”
She nodded. “You know,” Denise continued, “not being able to see and walk around freely.” The medical students appeared puzzled.
“Let’s go there,” I responded.
“Look,” she said to me. “I care so much about photography. To not shoot photos would be horrific.”
“I get that,” I told her. “But you think I am dependent?”
“Yeah. I have spent a lot of time with you. You are so dependent on people. You do not drive anymore. You have trouble crossing the street alone.”
“But Denise,” I said softly. “You are going to be totally dependent on others for everything.”
“I know.” She paused. “That is right. I am, and that kills me.” I could hear her breathing. “Dependence is worse than dying.”
I had observed during our years together that many among us tended to view others as having it worse than they did. I guess we are all more comfortable with the devil we know.
WE LEFT HARVARD Medical School with sobering testimony echoing through our heads. A tribute from the podium gave heart to five individuals who had offered very personal accounts of their struggles with sickness. “I want to say that in fifteen years teaching here now,” Dr. David Cardozo told the gathering, “this is the best experience that I have had and the most useful.
“We have learned a tremendous amount from you,” he said, turning to the participants. “Hopefully we are going to be better scientists and doctors and human beings after the experience.”
Cardozo believes the youngest minds in medicine are open to change. “This will alter the direction of their training. Perhaps young medical minds will take a new shape. I think some will be inspired to work on chronic diseases.”
A conquering army, or maybe a guerrilla squad, returned to the Harvard Club for a last meal together. We patients had spoken our minds and the doctors were listening. Maybe we were heard. We celebrated our small victory.
Before going our separate ways, the group planned to tour the historic sights of Boston. Buzz and Susan’s son, Ryan, had shown up in Boston clutching a history book and a wish list of historic sights to visit that he had drawn up with Grandma’s assistance. Ryan had seemed oblivious to our agenda, no doubt by intent. During our sessions at the Harvard Club, he had wandered away from illness, heading over to a wall of watercolors of Bunker Hill and other Revolutionary War scenes.
We took the tour. And then we were gone.
“We are in touch by e-mail,” Buzz told me only days later. The group had carried their dialogue home. I was eager to know more.
Of the participants, he said, “They were great. There were no attitudes.” And what did Buzz learn? “I was amazed at how the diseases are different, but they have one thing in common.” Which is? “People without a voice,” he answered. “I get tired of beating my head against a wall because I have no voice. Now I do not feel so alone. The meetings made me stronger and more determined.”
“Buzz, did you talk about the trip at church?”
“Oh, yes. They were amazed and said I have more fire now. Someone said my testimony is powerful. Let me tell you. Buzz Bay has a voice now.”
“You had it before, Buzz.”
“I know,” he laughed. “Maybe I hear it better now.”
Later, a revealing e-mail from him arrived. “Ryan calls us Richard’s Team and you are our coach.” I read that as the sad wish of a little boy who hoped someone would save his Dad. Who better than a coach?
Buzz’s e-mail continued. “To say who surprised me the most, it was Sarah. I had envisioned an emaciated individual, but she is a ball of fire, knows what she wants and how to get there.”
All seemed to be in awe of one another and energized by their meeting. Sarah was struck by how positive everyone at the Boston event was. “I was amazed at how they approach life.” And the medical school audience? “I felt the seminar made an impression on the students.” In what way? “I think doctors have preconceived notions about the sick. We really are people. We do have lives. Doctors do need to consider that.”
“I believe that we helped the medical students and ourselves at the same time,” Ben told me after he was home. “If they will become better doctors, we learned more about ourselves by talking and sharing our experiences. I took a lot away. Maybe I will grow.”
I had contacted Denise to get her take on the Harvard meeting, wanting to know if anyone had made an impression on her. “I have such respect for Sarah. So far my illness is tolerable. With pain and weight problems, bleeding and bowel issues, I would have killed myself. I want a better quality of life than that. I do not know how Sarah does it.”
As for Ben, “What he said at the meetings. Wow.” I had told Denise in advance that Ben might stay silent. “For someone who does not speak, oh my God. He is a kid of twenty who is an adult of fifty, with a phenomenal philosophy. Ben had to grow up faster than any kid, realizing what he is going to go through. His outlook on life is extraordinary.”
Denise said she had strong reactions to Buzz and Larry in one-on-one conversations at breakfasts or over coffee. “They really hit me. Buzz has a fatal, incurable disease. I felt close to him in that regard. I am not putting down the others, but there is more of a connection with Buzz because he is going to die.”
“With Larry,” she went on, “I did not realize how much he had been affected by me. I showed him thank-you notes from young kids who talked with me about ALS. Larry was very moved. Also, he and I talked about volunteerism. It was a good give-and-take. Meeting someone new and having an impact right away is a strong experience.” And Larry, I pointed out, is someone with his own problems. “Yeah, big time.”
Larry did not wait to be asked for his reaction. His enthusiastic e-mail arrived in New York almost as soon as I did. “As I ride around the Appalachian Mountains, I find myself reflecting frequently on the conversations we had in group settings and one-on-one. For example: I have been wearing a red wrist band Denise gave me that says ‘Never Give Up,’ and on several occasions, that message has transformed how I handled a present situation.”
The next line gave me pause. “Denise shared something when we had breakfast together that has stayed with me. And a conversation I had with Buzz entered my thoughts, and both are impacting my life daily.” That raised one obvious question: So, what did they say to you? I reached Larry at his mountain office near Atlanta.
“We had this moment in Boston. Five of us were connected for just three days.” Larry paused. “Richard,” he said, “that is a brief time.”
“Yeah,” I slowly responded.
“We were a community that came together.”
“Yeah?”
“Three days with those five people brought clarity to my thinking. We are connected, and we were strong at the broken places.”
Larry was taken with the fresh view of a younger generation. “I miss Ben’s insights. I wish I had the perspective Ben has when I was in college. He gives me hope for the world and evolved communities where all are welcome.”
“What about Buzz?” I asked. “What was that conversation you had with him about?”
“Buzz is a powerful man,” Larry said. “You cannot convince me that his thoughts about life and his faith have had no impact on his body. I believe Buzz has that much power over the cells in his body.”
“I do not know about that kind of power, Larry. Maybe.”
“The cancer has stopped dead in its tracks.”
“For now,” I said.
“Yeah. For now, but I believe that is no accident.”
“And what about that conversation with Denise?”
“Let me tell you about something that happened,” Larry said, barely suppressing a laugh. “We were sitting at the Harvard Club. Denise was drinking water. Her glass had a speck in it.” Larry paused, then described Denise sticking her finger into the glass and flicking the speck away. “‘It is not like that is going to kill me,’ she said.” I could hear the emotion in Larry’s voice. “Richard, we both started laughing.” The meaning of the anecdote was escaping me.
“I cannot tell you what a moment this was for my soul. It was so uplifting for me.”
“Why, Larry?”
“Because we were living in the moment. What we have is right now, magnified by momentary insight. Does that make sense, Richard?” I was not certain. “I cannot stand chronically normal people,” Larry added. “I love people who appreciate life. They are more inspiring.”
“Certainly,” I added, “they are more interesting.”
“Richard,” Larry said abruptly. “Did you know that Denise has a pistol?”
Silence echoed through my head as the computer search automatically began. Did I know? “I am not sure,” I answered, which sounded implausible, even to me. Yet the stray fact of a gun did sound familiar. “I almost did not tell you,” Larry said.
Faint memory, perhaps disconnected by discomfort, suggested Denise may have told me that as a woman living alone, she needed a weapon. Larry had a different take. “Denise does not think anyone understands her profound depression. Having the gun seems to make her feel she is in control.” Control is such a looming issue for Denise.
“Why did she tell you?”
“I do not know. She just told me she has a .38.”
Years of conversation with Denise about drawing lines and deciding how far to allow the ALS to progress suggest that she is keeping her options open. Suddenly the subject seemed different. Maybe Denise does have a plan. I was not sure what to do with that thought and decided to think about it for a while. I was in no hurry to confront Denise about actions and choices I respected. Still, I wanted to know.
Denise was in New York with friends a month after we left Harvard. Christmas was fast approaching. I told her what Larry had said about the pistol. She melted.
“This was a very difficult year,” she said very slowly, clearly taken aback. “I have been very depressed, having to go on the walker and giving up traveling. I may have visited my last exotic destination.”
“But the gun, Denise, what about the gun?”
“I do not know,” she said haltingly, her voice growing soft and trailing off. She seemed surprisingly to be without words. “I think I am over it.”
“Denise, would you ever use that pistol?”
“I doubt it.” She stopped for a moment. “There are other ways, more peaceful ways, if that moment comes.”
I had found an essay written by Catherine Royce called, “I Always Have a Choice.” Royce is an ALS patient who writes about living with the disease.
“Every day I choose not only how I will live, but if I will live.” I heard the echo of Denise’s voice in Royce’s words. “I have no particular religious mandate that forbids contemplating a shorter life, an action that would deny this disease its ultimate expression. But this is where my belief in choice truly finds its power. I can choose to see ALS as nothing more than a death sentence, or I can choose to see it as an invitation—an opportunity to learn who I truly am.”
ON OUR LAST night together in Boston, the group had presented me with a faux Harvard gift certificate entitling RMC “to enroll in one semester of Anger Management 101 to combat his rage.” To my astonishment, anger did not rank high in the inventory of emotions carted around by my new friends. Anger has always been too useful a coping mechanism for me to abandon. Yet no one seemed to have the time to be angry, except me. Still, I was ready to matriculate. Maybe my anger could be muted by the new life lessons of others.
“The subject we have not talked about is the power of today,” Larry had said, hushing the group that evening. “That is my spirituality, the power of today. Even having to hang out with a guy like Richard, I mean, that is okay. I guess.” Almost everyone had laughed.
“We have to let go of yesterday,” he continued. “There is not a whole lot I can do about tomorrow. But man, this moment, hanging out with these four people and you and the families. That is real life. That is right now. And this is the stage we are on.” Buzz jumped in. “You’ve got to live in that moment.”
Larry hit it back. ”You’ve got that right.” There was quiet. “I could be dead tomorrow,” Buzz added. “I mean, all of us could. Anything could happen. But now, you take what you have and live.”
“Do you feel like you live in the moment?” I asked.
“I have had to learn to do that. I live for what is happening at this time,” Buzz answered. “I had yesterday. I got through it. Will I wake up tomorrow? I do not know. I do not know that.”
“This is a function of shifting the way you live because of your illness,” I suggested.
“Or personal transformation,” Larry responded. “That is right,” Buzz said quickly. “Because I do not think my faith was as strong until I got cancer.” That could have gone either way, I suggested. “I think my faith has really solidified because I had to depend on something much higher than me to get me through this. Doctors were not doing it. They gave up. They said there was nothing more they can do; you are basically on your own.”
“You can never anticipate how high the human spirit can soar,” Larry added. “I mean, the people in this room are defying what the docs have said. And I would believe that common to all of us is that we depend heavily on a thing called hope. It is a form of faith. It sustains me daily.”
Our bottom line in Boston had been hope. The idea is not new but ever elusive for those who are suffering. Said Ben’s mother, Debi, “When Ben was diagnosed, what my husband and I were not given was hope. The doctor had none to share.”
“When did hope come?”
“Hope came slowly from talking to each other and with other parents. Hope also came from all the emotions we shared over the years.”
Hope is as difficult to maintain as it is to find. “When I see Ben, even as he is getting weaker, he is not giving into it. That helps me. He has matured so much, and he keeps going.”
“Does that make life more bearable for you?”
“I get my hope through him. Ben’s spirit keeps me going.”
Debi pushes her son to keep going. “I look at him and say, Ben, this is not all about you. It is bigger than you.” Debi sounded so controlled. “Each of us is put on this earth with a purpose.”
Adding a final thought, Debi said, “Maybe your purpose is that others can see strength in you. I said to Ben, ‘Get over it. Pick yourself up and be positive. You have a lot to offer this world. Have faith.’”
We had left Harvard for a less rarified world and the routine grind of our struggles. My hope, I had told the folks around the table, is peace for those who face and fear uncertain futures. We battle illnesses and fight fiercely but we all need to remain productive members of our worlds.
We can only hope the indifferent around us, next door and down the block or around the corner, will view us as more than our diagnoses and find value in who we are and what we can offer.
I HAD REACHED out to others to witness their battles and in the end become better at fighting my own. I had learned that we each approach the mysterious task of coping a little differently, but we constantly search for answers. The thing about the sick is that we think about these issues because we have to.
We aspire to live and have good lives, defining exactly what that means as we go along, all the while dealing with an ever-changing physical landscape. We all want to live normally and function in the community. We certainly do not want special treatment; indeed, we want to be the same as everyone else.
We withdraw resilience from our emotional banks a bit at a time, praying we are not overdrawing our accounts. We are stronger than we know. Perhaps that assertion is more hope than certainty because we so need it to be. Believing provides the fuel we need to keep going even when we doubt ourselves or believe we never will make it through the day, let alone the night.
I awaken each day and hate being a sick person. But dealing with disability has become a calling. And after writing this book and learning from the gentle people who trusted me and themselves enough to embark on this journey, I now understand that we sick travel together. In spirit, we are one.
And on that day when we cannot walk and words can come no more, we will stand together. When we no longer break bread with one another, still we will sit at the same table. Our hearts will stay strong. In thought and with spirit, we will fly. Our own compasses point the way, and the winds forever will be at our backs.