A Jehovah’s Witness with Leukemia: my brother’s illness and death

Today would have been my brother’s fifty-eighth birthday. My brother, Donald, died ten days before turning twenty-eight. He was diagnosed with Acute Myelogenous Leukemia (AML) on December 11th, 1985 and died on February 2nd, 1986.

A diagnosis of AML, for a faithful Jehovah’s Witnesses, is a death sentence. Leukemia is cancer of the blood and the main treatment for AML is a bone marrow transplant and blood transfusions. Donald was one of Jehovah’s Witnesses. He was a Ministerial Servant, well on his way to becoming an elder. As one who believed Watchtower doctrine, he would not consider a bone marrow transplant or blood transfusions, even when faced with a terminal diagnosis. His physicians told him that without treatment, he could expect to die within one to six weeks.

Although bone marrow transplants were once forbidden, in the Watchtower magazine’s March 15th, 1980 edition, there was a reversal in their position regarding organ transplants. Bone marrow transplants are placed in this category, so you would think it is allowed. However, in order to assure that a patient’s body will be strong enough to receive a bone marrow transplant, many pints of blood are transfused into a patient’s body prior to receiving a bone marrow transplant. Therefore, Jehovah’s Witnesses will refuse a bone marrow transplant.

Watchtower’s blood stance has evolved through the decades. In recent years, Jehovah’s Witnesses have been told that they can receive “blood fractions” as a matter of conscience. Although this new change of position would not have helped my brother (as he needed whole blood), it matters to those whose family members died before these changes were implemented. The Watchtower’s current stance on whole blood and blood components is complicated and somewhat nonsensical. I will provide links to websites devoted to that subject at the end of this article*.

Before you read my brother’s story, it will help you to know that he was the only one in my family who was one of Jehovah’s Witnesses. He became a Witness at age twenty, along with his wife.

 

Donald walking away from the baptismal pool just after being baptized.

Donald walking away from the baptismal pool just after being baptized.

He was not raised as a Witness and our parents were not Witnesses. I studied and attended the Kingdom Hall for eleven years (even after his death), but was never baptized.

My mother, Donald and his children.

My mother, Donald and his children.

I’m not sure why he looks so serious in this picture! What I notice most in this picture is how colorful he looks. His lips are a healthy shade of pink and his cheeks and nose have color to them. Months later, his face was extremely pale and his lips were completely white.

Donald’s Diagnosis

Like many Jehovah’s Witness parents, my brother and his wife home-schooled their kids. In the autumn of 1985, they drove from their home in Florida to Arizona. They called their adventure a “field trip” and my brother sent postcards to me and my mother while he traveled. In a few of his messages, he mentioned having a cold that would not go away. He visited a physician in Arizona and was told that he had pleurisy. The physician gave him medicine and suggested that he cut his trip short.

He and his wife, Carole, traveled back to their home in Florida. By the time they got home, he was feeling much worse. He was so short-of-breath, he couldn’t complete a sentence in one breath.  Every three words or so, he would need to inhale. He went to see his physician in December 1985 and learned that he did not have pleurisy. Bloodwork and a bone marrow biopsy revealed that Donald had tons of immature white blood cells (leukocytes) that were interfering with his bone marrow’s ability to produce normal red blood cells. His red blood cells were misshapen (not round) and were not able to do their job of transporting oxygen. His bone marrow was full of these immature white blood cells and misshapen red blood cells. That was the reason he felt so sick and was having trouble catching his breath. In order to live, he needed to have his bone marrow replaced.

Prognosis: One to Six Weeks

On December 11th, 1985, I was at home in Connecticut. I just got home from the library when my father told me to call my sister-in-law Carole. When I called her, she told me that I needed to fly to Florida as soon as possible. She explained the situation to me and said that the doctor told her that my brother might die within one week. Just in case he was going to die that quickly, my father bought tickets for my mother, me and my brother Mike to fly down to Florida. My father chose to stay home because he couldn’t believe that Donald was really going to die. He didn’t think anyone was lying. He just couldn’t grasp that it was really happening.

The next day, I was sitting on a plane with my mother and brother Mike. The plane was filled to capacity and I felt claustrophobic. I closed my eyes to escape my surroundings, but I couldn’t escape my thoughts. I kept trying to imagine what Donald would look like when I finally got to see him. I envisioned walking into his bedroom and seeing him looking ashen, with a gray face. All of a sudden, I felt like I had to vomit. My brother Mike held the bag (those bags on an airplane that you think you will never need.) Mike held my hair back with one hand and held the bag with his other hand. I never felt his love for me as strongly as I did in those moments. We were both scared about what we would face when we got to Donald’s house.

When we finally got to his house, a lady came out onto the porch and told us to wait. She was the wife of an elder who was “visiting” Donald.

One-by-one, my sister-in-law, Carole, let us go into Donald’s bedroom. My mother went first, then Mike, then me. Carole didn’t let us all go in at once because she thought Donald would try to talk and might get out-of-breath. When I saw him, I made the following observations: he was wrapped in a sheet; his lips were completely white and he was breathing like a rabbit—rapid and shallow breaths. (Later on, I tried to mimic his breathing to see what it felt like and I immediately became dizzy. I couldn’t even do it for one minute.)

I asked him why he had a sheet wrapped around him. He said, “My skin hurts.” The skin on his entire body hurt. Can you imagine?

In this picture, you can see how pale Donald’s lips were and, of course, he was wrapped in a sheet. Though he knew he was dying, he still found reasons to laugh and smile.

In this picture, you can see how pale Donald’s lips were and, of course, he was wrapped in a sheet. Though he knew he was dying, he still found reasons to laugh and smile.

Elders Hovering Around the Room

Three elders were in Donald’s bedroom during the day. They stayed for hours and came back day-after-day. They actually took shifts so that my brother was never alone with me, my brother Mike or my mother. Looking back, I believe it is because the elders knew we were not Jehovah’s Witnesses. They must have thought we would try to talk Donald into receiving a blood transfusion and bone marrow transplant.

After five days of having these strangers hovering around Donald, I had enough. I asked them to go home. I told them that my time with Donald was limited and I wanted them to give us time to be a family. Thankfully, the elders respected my wishes and left. I was only able to be in Florida for one week, so by the time the elders finally went home, I only had two full days to spend with Donald.

A few years later, the Watchtower implemented “Hospital Liaison Committees”. However, in late 1985-early 1986, the HLC didn’t exist yet. Instead, the three elders in my brother’s bedroom were serving in that capacity under the guise of having a “Bible Study” with him. I could hear them reading scriptures to Donald, mostly about “keeping his eyes on the prize”.

Donald did not want to die, but he also did not want to “betray Jehovah” by receiving a blood transfusion or a bone marrow transplant. His wife, Carole, read about nutritional supplementation that would build up the iron in his blood. She began to make juice out of beet roots and leaves. She also crushed various herbs and put them into oatmeal for him to ingest. (You can see the beet juice and pink oatmeal in the image of him wrapped in a sheet).

The Nights Spent Holding My Hand

At night, while everyone was sleeping, I stayed awake all through the night. I lay on the floor beside his bed. He would put his hand over the edge of his bed and I would reach up and hold it. While we were holding hands, he would watch “Cheers” and “The Three Stooges” on video tape. He also watched episodes of “I Love Lucy”. He told me that he wanted to watch things that made him laugh.

One night, while we were watching “The Three Stooges”, I fell asleep and my hand let go of his hand. All of a sudden, I heard him say “Karen!” really loud. (Keep in mind, he had been whispering and breathing shallow for a week). I woke up in a panic! Donald explained to me that the reason he wanted me to hold his hand all night was because he wanted someone to be awake in case he died. He didn’t want to die in the middle of the night, all alone, while everyone slept.

It was at that moment when I realized just how important my presence was to him. Another thing that made me feel special was that I was the only person (besides Carole) that he felt comfortable having empty his urinal. It may seem trivial (and maybe even gross), but I felt honored that he chose me to hold his hand in the middle of the night and to empty his urinal. As I write this, I still feel honored.

Typing His Assigned “Blood Talk”

Donald was a Ministerial Servant. He was eager to become an elder, so he was thrilled when he was assigned to give a talk. It was assigned to him before he felt sick. The topic: “Why it is better NOT to have a blood transfusion”.  When he became sick and his skin hurt, he still continued to type his talk. He began working on it before he felt sick and was determined to finish it before he died. During the time I was with him in Florida, he typed until his finger pads hurt. I offered to type, but he said that he must do it. He wanted to finish the task. He was using a manual typewriter, so it required pushing down hard on the keys. He told me that he preferred typing instead of writing because his vision was getting blurry.

My mother, my brother Mike and I eventually had to go back to Connecticut. Donald kept in touch with us through typed letters. Last night, as I prepared the images to go along with this article, I found the last note my brother every typed to my mother. He died ten days after my mother received this note in the mail.

Here is page one:

Even though he had less than two weeks to live, he was making jokes! “You’d think I was sick or something! I really look bad!!”

Even though he had less than two weeks to live, he was making jokes! “You’d think I was sick or something! I really look bad!!”

Here is page two:

“We went to Ponderosa and I had salad bar, grilled halibut (mmm…) and baked potato. I got real tired though. As soon as I got home, I stripped and crawled into bed for a nap. It was worth it and I had a good time.”

“We went to Ponderosa and I had salad bar, grilled halibut (mmm…) and baked potato. I got real tired though. As soon as I got home, I stripped and crawled into bed for a nap. It was worth it and I had a good time.”

Going out to eat was a huge ordeal since the clothes against his skin caused him a lot of pain. Walking, even a few steps, made him get out of breath. Chewing, swallowing and digesting food requires a lot of energy so going out to eat was a huge ordeal. Since his blood was not delivering adequate amounts of oxygen to his organs, it must have been completely exhausting. Yet, in his final note to my mother, he tells her that it was worth it.

Throughout his illness and six weeks of suffering, he never lost his sense of humor or his gratitude.  I asked him how he felt about dying. He said to me, “Don’t feel bad for me. I have the easy part. All I have to do is go to sleep. Then I get to wake up in the New System.”

Although he was speaking as one of Jehovah’s Witnesses, his peace of mind was incredible to me. I was so amazed by his attitude toward his impending death that I became a hospice nurse a few years later.

My brother continued to lose his vision and eventually wasn’t able to type or write. However, he did manage to finish his “blood talk” before he died.

My brother died sitting up in bed. He was leaning against his wife, Carole, and kept saying, “I’m going to die today.” Carole said, “Don’t say that. You will be fine. We’re going to get through this.” Then he said, “I can’t see.” Carole told me that Donald didn’t speak for another ten minutes.

Then, Donald said, “I’ll see you when I wake up.” Those were his last words.

As we know, Donald believed that when he died, he would be asleep in his grave. He believed that he would wake up in the New System. To anyone else, his last words would make no sense. However, to any Jehovah’s Witness, it makes perfect (although misguided) sense.

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After Donald’s Death

Donald and his wife celebrated their wedding anniversary on January 27th. He was able to sit up and eat a piece of fish. On February 2nd, 1986, he died sitting up next to his wife (as I described above).

On February 5th, 1986, one of the brothers at the Largo North (Florida) congregation read Donald’s talk on behalf of Donald. I have a cassette recording of the talk. I can’t bring myself to listen to it because the “Brother” begins the talk by describing how Donald was a ‘martyr’ and that it was no coincidence that my brother was assigned this talk. The “Brother” implied that my brother getting leukemia and dying after refusing treatment only made the talk that much more meaningful.

On February 7th, 1986 the Largo North congregation held a memorial for Donald. My family was in Connecticut, so my sister-in-law made sure we received a recording of the talk. On the outside of the cassette, the words “196 in attendance” are written. I have only heard the tape one time. A different “Brother” gave his memorial talk. That “Brother” also referred to Donald as a martyr.

My brother was not a martyr. He was a card-carrying victim.

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Source for the above two images:

https://www.rcseng.ac.uk/publications/docs/jehovahs_witness.html/@@download/pdffile/Jehovah’s%20Witnesses.pdf

Note the wording in the above photo: “I understand that my express refusal of allogenic blood or primary blood components will be regarded as absolute and will NOT be over-ridden in ANY circumstance by a purported consent of a relative or other person or body.”

 

In the September 15, 2015 Watchtower magazine, the following can be found on pages 9 – 10:

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Source of photo: http://wol.jw.org/en/wol/d/r1/lp-e/2015682

Conclusion

Thirty years after my brother’s death, Jehovah’s Witnesses are still instructed to refuse blood transfusions.  My brother is just one of thousands who have lost their lives due to this doctrine.

Today, February 12, 2016, my brother will not get to turn fifty-eight years old.

 

* JW Facts: “Jehovah’s Witnesses and Blood Transfusions”

http://www.jwfacts.com/watchtower/blood-transfusions.php

 

* AJWRB: “Watchtower Approved Blood Transfusions”

http://ajwrb.org/watchtower-approved-blood-transfusions

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