Survivor of Congenital Arteriovenous Malformation Speaks About Sen. Tim Johnson’s Illness and Her Own Recovery

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Donna Cappella suffered AVM a year and a half ago. She is the former business manager here at Downtown Community Television. Donna talks about how she had to relearn how to walk, speak, read and see. [includes rush transcript]

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This is a rush transcript. Copy may not be in its final form.

JUAN GONZALEZ: More than a week has passed since Democratic Senator Tim Johnson of South Dakota underwent emergency brain surgery. Johnson suffered bleeding in his brain caused by a rare condition known as “congenital arteriovenous malformation,” or AVM. It causes arteries and veins to grow abnormally large. The arteries become tangled and sometimes burst. Johnson was hospitalized nine days ago, after a conference call with reporters where he began to slur his words and stammer.

SEN. TIM JOHNSON: The money was—was—was proposed to be, uh, uh, provided, uh, a year ago—uh, uh, second—uh, you know, you—it just is—it’s just frustrating. And—

AMY GOODMAN: Soon afterwards, Johnson was taken to the hospital. Senator Johnson’s doctors say he remains in critical condition and is being kept sedated to aid his recovery from the brain surgery. His recovery could decide who controls the Senate. If he were to resign or die, the Republican governor of South Dakota, Mike Rounds, would be able to pick a Republican to replace him, thus giving the GOP control of the Senate. But as long as Johnson is alive, the Democratic majority will likely remain intact, because there is no rule requiring that a senator must be on Capitol Hill for every vote.

The Senate has never ousted a member over poor health. In 1969, another South Dakota senator, Karl Mundt, suffered a stroke. He never appeared in the Senate again but remained in office through 1972. In the 1940s, Senator Carter Glass of Virginia suffered heart trouble and was absent for four full years.

JUAN GONZALEZ: Today, we’re going to look not at the politics surrounding Johnson’s illness, but the illness itself. Donna Cappella joins us now. Donna suffered a congenital arteriovenous malformation a year and a half ago. She is the former business manager here at Downtown Community Television. Also with us is her husband Frederic Soule.

AMY GOODMAN: We welcome you both to Democracy Now!, and it’s great to have you with us. And it’s great, Donna, that you are in good enough health to be able to come back to work. Can you describe what happened to you and when it happened?

DONNA CAPPELLA: I was here at DCTV in a conference meeting, and I felt hot and a burning, and I was throwing up, so I excused myself, and I went to see Keiko Tsuno, who’s a co-founder. And she called her husband, who’s another co-founder, Jon Alpert. And they put me in the car. They gave me a bag to throw up in. And I went to the emergency room.

AMY GOODMAN: And at that point, did they understand, in the emergency room, what had happened to you?

DONNA CAPPELLA: No, it took a couple days for them to say maybe it’s a stroke or maybe it’s a brain thing. But then I went to the hospital, and they said, no, they didn’t know what was happening there. So then they did an MRI angiogram, and they found the AVM then.

AMY GOODMAN: Well, we’re going to go to break. When we come back, we’ll continue to talk to you, Donna, and your husband Fred Soule about what this year and a half of your recovery, of learning to do everything again, as well as speak, what this has been like.


AMY GOODMAN: We’re talking with Donna Cappella, who is the business manager here at DCTV. A year and a half ago, she suffered a congenital arteriovenous malformation, a rare brain condition that causes internal bleeding of the brain. And it is the same condition that South Dakota Senator Tim Johnson is suffering from right now. Frederic Soule is also with us, Donna Cappella’s husband.

Fred, talk about the beginning for you. We hear what Donna was going through. What did you understand was happening?

FREDERIC SOULE: Well, we went through all the tests, and they discovered the AVM, and they tried to do a process called embolization, which kind of glues it shut and is not as invasive as regular brain surgery. She was in that process for about four hours, and the surgeon just couldn’t get to it where it was. That was on a Friday night. She was scheduled for a craniotomy on the following Tuesday. On Monday, she had a real serious bleeding episode, and they had to do the surgery in emergency on that Monday night.

So, obviously, there was a lot of consternation and angst about that, with me and her family. But we had wonderful surgeons and doctors. They informed us exactly about what was going on. The surgery took about six hours. And she was in the neuro-ICU after that for about three weeks and then went to Kessler in East Orange for rehabilitation for about a month.

JUAN GONZALEZ: And when she came out of the surgery, what did the doctors tell you was the prognosis in terms of her recovery, or her chances?

FREDERIC SOULE: They said they couldn’t really tell at that time, but she was obviously going to have to go through a lot of rehabilitation. Her particular AVM was in the cerebellum, which is kind of good news, because the cerebellum can regenerate itself, but it does take a lot of intense therapy and rehabilitation. In Donna’s case, it affected more the motor part of the body and the coordination, swallowing, speech, things like that. It didn’t affect the cognitive learning kind of processes, so in a way, that was good news.

AMY GOODMAN: The news reports say that Senator Johnson’s AVM is also in the cerebellum. Now, how do you relearn, Donna? What is it that you lost the ability to do and then started to go through the therapy to regain?

DONNA CAPPELLA: Well, I relearned by practicing everything. I lost everything—my ability to walk, to talk, to eat, to eat with my mouth closed—everything—to see, to smell, to yawn. I lost everything. But I practice every day. I practice and practice and practice.

AMY GOODMAN: The doctors are saying you’re about a year ahead in terms of rehabilitating?

DONNA CAPPELLA: Yes, because originally they said two years, but most people don’t practice, don’t do their exercises. So I’m a year ahead of schedule. I came back to here in March, which is six, seven, eight months later. I worked one day. Now, I work three days here. So if you practice, you can do anything.

JUAN GONZALEZ: And when you say you lost these abilities, when you came out of the surgery, the therapists basically had to recontact with you or get your attention to be able to begin these exercises? How did it actually work?

DONNA CAPPELLA: Yes, that’s exactly right. They talked to me. They told me everything to do. And I did what they said. Most people don’t do what the therapists say, but you have to do what they say. You do what the doctor says.

AMY GOODMAN: Now, last week, you were busy faxing letters to the Johnson family. Why?

DONNA CAPPELLA: I want them, especially before the holiday, do not fight to be — to, not be happy, but be calm, because he lives through this. So he’s going to live, and it’s going to take a long time. I want them to call me, because I survived. He can survive. Anybody can survive. I want them to [inaudible].

JUAN GONZALEZ: And, Fred, in terms of the willpower of your wife through all of this to overcome it, could you talk about her experience from your perspective on this?

FREDERIC SOULE: Yeah. Donna has always been one who sets goals. I mean, when she came home from therapy, she was in a wheelchair, she had to be taken out, taken to bed. You know, meals had to be brought to her.

AMY GOODMAN: She had a patch over her eye, didn’t she?

FREDERIC SOULE: She had a patch over her eye, because of vision problems, which ultimately corrected themselves. But she had trouble so she couldn’t read and things like that. My daughter lives in Switzerland and was coming over with our grandchildren for Christmas, and she had vowed that she was going to be able to walk upstairs and, you know, get around by that time frame. And sure enough, she did. She wasn’t using a walker. She wasn’t using a wheelchair. Sometimes it would take her half an hour to go up the stairs, but she would do it. So she sets short-term goals for herself, reached them, and then set another one.

JUAN GONZALEZ: And what about her memory and her recollection of other people?

FREDERIC SOULE: Her memory is fine. She doesn’t have a lot of memory of the three weeks that she was in the neurosurgical ICU. She doesn’t have a whole lot of memory of the therapy, but things before that and, you know, history and all the cognitive skills, they’re all there. As a matter of fact, I think they’re even better than they were before.

AMY GOODMAN: What do you mean?

FREDERIC SOULE: Well, she tended to be a little unorganized before the surgery. Now, she’s a lot more organized.

AMY GOODMAN: I do not want to cause any family feud here.

DONNA CAPPELLA: Really, I’m going to kill him.

AMY GOODMAN: Any words of advice, Fred, that you have for the Johnson family, going through a similar situation?

FREDERIC SOULE: You just have to be supportive. You have to understand what they’re going through. It’s a lot like — you know, I have a four-year-old granddaughter who is learning a lot of the things that Donna had to relearn, so it’s kind of interesting. But it’s going to happen. You just work hard and be supportive, and they’ll come through it.

AMY GOODMAN: Well, I want to thank you both very much for being with us. Donna Cappella, again, suffers the same condition than Senator Tim Johnson suffers, the Senator from South Dakota. Donna is suffering from AVM and recovering. This is a year and a half into her recovery. She works here at Downtown Community Television in New York. Fred Soule is her husband, works at Lehman Brothers. Thanks so much for joining us.

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