15 ~ (2002—2003)
Advice from Jethro
In 2000, my book on sexual abuse was published in Brazil, and brought with it a deluge of publicity (radio, TV, magazine articles) and speaking invitations from all over the country: exactly what I had feared would happen in response to breaking a “taboo” of Brazilian culture, speaking out about this monster in the closet. Several people wanted to help take advantage of the interest and momentum that had been generated, in order to mount a major effort toward reaching sexual abuse victims. However, I almost completely curtailed my involvement with all of this while Karis was so sick her senior year of high school, so what might have been a “big splash” turned into just a little splash.
In the fall of 2001, with Karis happily thriving at Notre Dame, Dan in his junior year at Yale, Rachel and Valerie still at home but quite independent (Rachel a high school junior and Valerie in 8th grade), I was able to return my attention to developing support groups for sexual abuse survivors and training leaders (most of them survivors themselves). We put together wonderful training conferences and were doubly blessed by the teaching of Dr. Diane Langberg at a national-level congress in October of 2002, since she was willing to speak both in southern Brazil and at a second conference in the northeast. I became convinced of God’s passionate concern for survivors as I saw people from all over Brazil come forward with a desire to work in this area. David was excited about investing heavily to put together an extensive program of training leaders and organizing support groups, but by then my focus had been diverted back to Karis and her needs. Shortly after the northeast conference, I left for the US to be with Karis through yet one more hospitalization.
In the spring of 2002 we began to hear vaguely from Karis that her old symptoms were stirring again. That summer, between her freshman and sophomore years of college, she lived with dear friends in the South Bend area and rode her bike five or six miles each way to campus for summer school. Dave and I spent the summer in the US visiting supporting churches and friends. When we first saw Karis in early summer, she looked terrific. Her body was strong and lithe and she seemed to glow with good health. But she whispered to me that she was having some trouble, no big deal, please don’t tell anyone else.
As the summer went on, her symptoms intensified. I decided to detour from our planned travel itinerary to go see her. I arrived at the house mid-afternoon and found Karis in bed. When I walked into the room, she burst into tears and cried for a long time. Then she talked for a long time. It was terribly difficult for her to be sick again. We could hardly bear to think that the hiatus she had gained through her Indianapolis surgeries could be coming to an end.
That fall, Karis had to go back on TPN, which required another central catheter. With a central line came the too-frequent nightmare of catheter infections. Karis’s doctor in South Bend, and the nurses at the university health center gave her marvelous support, and Karis tried to carry on college life as usual, including work, extra-curricular activities, and a whirlwind social life. But with worsening symptoms and frequent hospitalizations, she did not manage to complete all of her schoolwork within each allotted semester. The end of each term brought incompletes, which had to be conquered during her vacation times.
The day came when Karis’s adviser called her in to say that she should not continue in the pre-med program. Karis’s dream was to work in sub-Saharan Africa as a pediatrician. The biggest stress for her academically was science labs, because they could not be made up. For any lab she missed, she received a 0. Because of illness and hospitalizations, this happened frequently. She was continually playing catch-up in all of her classes, and her adviser thought it was all too much for her.
For the first time, Karis hit a barrier that she couldn’t figure out how to conquer. All of her life she had believed that she could do anything anyone else could do. She would not allow her illness to get in the way of achieving her goals. It was tough for her to come to terms with what she considered “failure” in her modus operandi. She had planned to become a doctor for so long that it was hard to imagine going in another direction. As a sophomore, she had to reconsider her strengths, weaknesses, and interests, and come up with a plan of study she could handle while at the same time trying to manage her illness.
Karis carefully evaluated the dozens of majors available at ND, and came to the conclusion that none of them really fit her new concept of what she would like to study. She sought permission to design her own major, a combination of international relations with peace studies, journalism, and languages. She maintained her focus on sub-Saharan Africa: history, politics, economics and culture, and French, Arabic, and Spanish. She had to write a defense of her choice of courses, explaining how they related to each other and to her overall goal, and defend it before a panel of professors. When her new major was approved, she became one of only a few in Notre Dame’s history to successfully do this.
During 2003, I spent three extended periods in the US because of the severity of Karis’s illness. At home in São Paulo, I received one day a shocking phone call from one of her doctors, who felt it was time for Karis to seriously consider intestinal transplant! She was dependent on TPN, and her frequent line infections were making it increasingly difficult to place a new catheter. Running out of veins would mean no central line and therefore no nutrition . . .
I was stunned by this phone call. We had always believed that transplant would never be an option for Karis. The history of intestinal transplantation was rugged: many who received intestinal transplants died within a year from complications of rejection or infection. The idea of putting Karis into the category of those who should seek transplant seemed unbelievable, and my first reaction was to dismiss this doctor’s perspective as exaggerated.
I did mention the doctor’s recommendation in a phone conversation with my son Dan, tossing it off in the vein of “Can you believe someone would actually think something like that?!” Dan’s response was to do some serious research about intestinal transplant, and the information he gave us prompted me to ask Karis’s other doctors their perspective. Should we take this idea seriously? Was it really time to investigate further? Of the five physicians whom I asked, three said yes, one said no, and one wasn’t sure. That was very sobering to me. I had anticipated that the other doctors would confirm my own feeling that transplant was too extreme and risky to even think about for Karis.
The doctor who said no affirmed my foundational belief in regard to transplant. I have repeated his words to many other people who wonder whether transplant might be an option for someone they know with intestinal disease: “Transplant is not a solution. It’s a trade, of one set of problems for another. It should only be considered when you are up against a dead end with absolutely no other place to go.”
I gratefully accepted from this doctor confirmation of my belief that Karis was not anywhere near that dead end. My comfort zone was invaded yet again, however, when our son Dan sent me the list of requirements to qualify for intestinal transplant in Pittsburgh, the world leader in this area. High on the list was the need for at least two open veins for central lines, not counting the femorals. At that point I didn’t know whether Karis still had two open upper-body veins. I thought she was using her last one, as well as having obstructed one of her femorals.
We had not yet talked seriously with Karis about transplant. It seemed too frightening to broach unless we really thought that was the direction we would have to walk. When she was hospitalized with yet one more scary line infection, in October of 2003 I decided to contact the transplant folks in Pittsburgh by e-mail and just ask them what they thought about Karis’s situation. Their quick response was that Karis should go to Pittsburgh for an evaluation as soon as it could be arranged, and that as many members of the family as possible should participate in the informational classes that would be offered in connection with Karis’s medical and psycho-social examinations. Pittsburgh told us that transplant is a whole-family affair, and to be successful, would require the understanding and support of every member of the family.
Reading that e-mail was surreal, like walking into a living nightmare. David was working on his own computer at a desk next to mine. Feeling that I was entering a state of panic, I tried to communicate with Dave. He read the e-mail, got out his agenda, flipped through the pages, and said, “I could do this next August. Ask them to reserve time for us in August of 2004.” Then he turned back to the work he had been doing.
I was dumbfounded. Next August was ten months away! I stared at David’s back, suddenly overwhelmed with all of my old feelings of hurt, and anger, and resentment. This was a very huge deal to me: a complex and terrifying venture into unfamiliar territory. It involved the life and wellbeing of our daughter, perhaps her very survival. How could Dave treat this so casually? Did he think “as soon as possible” meant, “whenever it might be convenient”—for him? Was I over-reacting, getting worried without sufficient cause, or was David under-reacting? Did he know better than these doctors?! I didn’t know, I didn’t know how to figure it out, and I did not want to try to figure it out by myself.
An emotional discussion ensued, at the end of which David repeated his original statement: “If you want me to participate, I can see traveling to the US next August. Ask if they can schedule her evaluation for those dates. I really don’t have space in my calendar to do it before then.”
Shattered, I ran once again (by telephone) to my friend Mary for help. She had wise advice, which stabilized me emotionally and helped me see the next step to take. (Internally, I reaffirmed my Indianapolis vow not to expect or require anything from my husband in relation to Karis’s health.) Mary told me that Karis was the one who needed to make the decision of whether and how soon to go to Pittsburgh for transplant evaluation. “It’s her life, she knows best how she’s doing, and she’s old enough to take responsibility for this herself. If she decides the evaluation should actually be done ‘as soon as possible,’ you go ahead and do what you think is right in terms of supporting her, and let David make his own decision about whether he participates or not.”
I had to explain to Karis by telephone, a continent away, all that I understood about intestinal transplant. Miserable, frustrated, and anxious for anything that might make a difference in her life, Karis made the decision to do the evaluation “as soon as possible,” as had been recommended, which on the transplant center’s schedule turned out to be the end of November, just a few weeks away. I made plans to go, and communicated what was happening to other members of our family. Our son Dan, working in New York City, since his May graduation from Yale, immediately said that he would be there. Rachel was a freshman in college and the evaluation fell at an awkward time in her semester, so she chose not to participate. Valerie, 15, would stay in school in Brazil. Over the upcoming Christmas vacation we would pass on to Rae and Val what we learned.
When/how did David decide to go? I don’t remember. I do know that it was his own decision, with no pressure or expectations from me. When he told me that he was going, I asked him to do so only if he could enter into the experience with his whole heart and attention. In view of our history, I was skeptical that he would be capable of doing that, but it seemed to me essential in order to give Karis the type of support I thought she would need in the face of such a momentous life choice.
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