She was determined to make a difference and transform the world
Erna Albertz (1979 –)
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Brenda was a carefree teenager in southern England when an episode of nausea – and an unexpected diagnosis – changed the course of her life.
I was in ninth grade, and I started losing my breakfast every day. Or I’d wake up and vomit, first thing. Before long I had dropped out of school and was completely bedridden, because I couldn’t keep anything down.
Over the next three months, they interrogated me in every hospital I went to. At one place, they were convinced I was pregnant and trying to hide it. Finally, an intern noticed a buildup of pressure behind my eyes, ordered a CT scan, and discovered a brain tumor. I was immediately scheduled for surgery.
Soon after that I began radiation. At that time, the type of tumor I had was thought to be malignant, and my entire head and spine were irradiated. My hair fell out; and the steroids I was on changed me completely. I had a big, fat face.
If Brenda’s illness altered her physically, it also changed her inwardly and gave her maturity. That was especially true of the major brain surgery she underwent in 1988, in a risky bid to remove her tumor: “Surviving made me feel that God had given me another chance at life, and that I had to use it for something. I was less self-centered and more sensitive to what other people, like my peers, were going through.”
One of those peers was Sam, who had developed a crush on “this energetic girl who liked to tease the boys” before she had become ill, and found himself praying for her – praying for the first time in his life. Those prayers were answered, and before long, Brenda recovered. Best of all, the tumor was determined not to have been cancerous.
In 1996, with Brenda in seemingly good health, she and Sam married. Over the next years they welcomed four healthy children – each an unexpected gift, says Brenda, given the amount of radiation to which she had been exposed. Then things took a turn. In Sam’s words:
In 2003 Brenda started experiencing numbness and tingling. An MRI showed up a cavernous angioma in the brain stem, and the doctors warned us that she might go into a coma any minute. Our youngest was two months old, and our eldest six years. Brenda wrote a farewell letter.
Thankfully, the letter could be laid aside. But not the new fears, and not the chronic symptoms – constant severe headaches, double vision, and other medical burdens – that have proven to be largely untreatable and incurable, and have dogged Brenda ever since.
By 2007, a specialist noticed meningiomas (tumors in the outer covering of the brain), most probably caused by the radiation treatments she had undergone as a teen. After three major brain surgeries, there was some respite, but each time the pain started increasing again. “It seemed like we visited just about every expert in New York,” says Sam, “and tried everything from acupuncture to Botox. Anything, to allow Brenda to function.”
In 2014, a new challenge arose: the treatment itself was becoming a problem. Brenda had grown increasingly dependent on painkillers such as oxycodone and fentanyl.
My physicians tried to convince me to reduce my meds slowly, but I was like, “I’ve had it with being a zombie, and I’m not going to go back there.” In the end, I basically went cold turkey. It was a total nightmare. I would curl up in bed, my whole body just aching.
I think chronic pain makes you more aware of what is important, and less easily bothered by the petty stuff of life. And that, I think, is a blessing. Because I don’t think I’d naturally be like that.
I listened to Mendelssohn’s Elijah over and over and over. When Elijah says, “It is enough, Lord; take away my life!” I felt like he was speaking for me. But then there were the words, “Be not afraid! I am your God! I am he that comforteth.” Those also spoke to me.
In 2017 Brenda had major surgery again, followed by a risky infection. “Through it all,” Sam says, “our community – our brothers and sisters – stood by us.”
How else could we have survived this ordeal? At one point, I was in New York City for twenty-one days straight while Brenda was in the hospital. I didn’t need a hotel. I stayed, like I often did, at the Bruderhof house in Harlem.
I’m a teacher. But I never lost my job. Our kids are adults now, but they never lacked care once in all those years. And the support of our primary-care doctors – Bruderhof doctors – who accompanied us to major appointments and went to bat for us again and again? The specialists couldn’t believe it. Or the time the community sent us with our children to Florida for three weeks, just to be together as a family.
Of course, we still had dark times. Do you know how many times Brenda has said to me, “I wish I could just die. That would be better than this ongoing, no-end-in-sight pain. Plus, I feel so useless.”
And yet, Brenda adds, her illness has also knitted the family deeply together over time, and strengthened her faith:
I don’t see how you could get through what I’ve had to deal with without some kind of faith – without turning to Jesus and relying on him to give you peace, or the courage to get up and go through another day. Plus, I think chronic pain makes you more aware of what is important, and less easily bothered by the petty stuff of life. And that, I think, is a blessing. Because I don’t think I’d naturally be like that.
I’ve never said, “Thank you, God, for sending me this.” But I do find comfort in knowing that Jesus knows what suffering is. And godforsakenness. That Jesus has become real to Sam and me.
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With photography by British photojournalist Danny Burrows, this 300-page hardcover book celebrates what is possible when people take a leap of faith. It will inspire anyone working to build a more just, peaceful, and sustainable future.
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