Charles had late-stage ALS… then he conceived a baby with his wife

Charles had late-stage ALS… then he conceived a baby with his wife,

I was floating on a mountaintop of happiness. 

My family and I were on spring break in the Julia Pfeiffer National Park in California with my younger brother, Charles, who was my best friend. We were visiting one of his favorite places on earth, Big Sur, before he became ill. 

Charles took us on a glorious morning hike along the western slope of the Santa Lucia mountains, through sun-dappled groves of sycamores, conifers and oaks. 

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We then zigzagged our way down to an unmarked road off Highway One to one of his favorite beaches, where towering outcroppings of rocks were slowly giving way to the ceaseless pounding of the Pacific Ocean.

Charles had brought us here for a swim. We looked around. Hues of garnet, claret and ruby red impregnated the sands in great swirls of cosmic art. 

‘Check it out,’ Charles said to our kids. ‘After the gods created the earth, they threw a festive party, everyone drank a lot of red wine, and they spilled most of it on this beach. See here and here…’ he gestured wildly at the swirls. 

The kids laughed and we all marveled at this magical, groovy paradise tucked out of sight.

That evening, at a restaurant perched over the edge of the Pacific, we ordered a bottle of wine to toast the day and watched the fiery orange sun melt on the horizon. 

Best friends even as children – Larkin with baby brother Charles

Larkin and Charles in Paris – he was diagnosed with ALS years later, age 44

Charles put his wine glass to his lips and spilled a little of it. We all laughed. For the kids, Uncle Charles was a funny guy, not easily embarrassed. 

The waiter came over to take our order. Again, Charles sipped from his glass, this time dribbling wine down his crisply pressed blue shirt. 

The kids cackled loudly because of the waiter’s presence. We made a joke about the gods spilling wine on Pfeiffer Beach and carried on with our order. 

Little did any of us know that the dribbling of wine down Charles’s shirt signaled the beginning of the end of his life. His body’s nervous system was undergoing a massive breakdown – barely visible to the naked eye.

Within months of that dinner – in June 2006 – Charles was diagnosed with amyotrophic lateral sclerosis (ALS), a fatal neurodegenerative disorder that destroys every voluntary muscle in the body, resulting in complete paralysis and eventual death.

ALS, also called Lou Gehrig’s disease, affects 30,000 Americans a year.  

He was 44 years old and was expected to live just a few years. It was hard for Charles or anyone in the family to wrap our heads around this death sentence. We had no family history of ALS, or any illness for that matter. We were a healthy bunch. 

Charles searched for other explanations – a hiking illness, an environmental exposure from a year working in Antarctica – as anyone in his shoes would.

Nevertheless, he studied ALS like a good scientist but with a ‘New Agey’ bend. He turned his body into a testing ground for his theories: He took long-term antibiotics, he had his mercury fillings removed from his teeth, he studied herbal supplements and took a bunch of them, he practiced deep breathing exercises, and he adopted a fully organic diet. 

On one visit, I accompanied him to a Chinese acupuncturist who pricked his body with scores of needles. Resting on a bed, he looked like a slain porcupine. We both sat in silence, hoping this Eastern doctor could open channels of healing that Western medicine could not.

In time, the relentless march of ALS overwhelmed Charles’s efforts. He had bulbar ALS, a more rapidly debilitating form of the illness that primarily affects the brainstem, leading to difficulties with speech, swallowing and breathing. 

His beautiful muscular physique began to diminish, he fell several times, he lost his ability to walk, he struggled to swallow food and, eventually, he lost his ability to speak. 

He was becoming ‘locked in’ as the expression goes – even though his mind was as sharp as a blade of green grass.

I made regular visits from my home in Minneapolis to see Charles, his wife Petra and their young daughter, Celia, in Woodland Hills, California. 

Actor Eric Dane brought ALS back into the headlines when he died of the disease earlier this year

Charles, his wife Petra and their young daughter, Celia – Charles survived far beyond the life expectancy of a patient with bulbar ALS

Four years into the illness, far beyond the average life expectancy of a patient with bulbar ALS, Charles was still with us in summer 2010, his life hanging by a thread. Each and every time I went to kiss Charles goodbye, his radiant face beaming at me, I held back tears. Each and every time, I feared that this would be the last time I would lay eyes on my beautiful baby brother.

But the illness of ALS would prove to be no match for Charles’s spirit. He never once complained about ALS and he and his wife Petra – in the face of insurmountable odds – never gave up hope. They chased down every lead, every theory and worked with doctors at UCLA who even visited Charles in his home for a blood draw when he became too weak to travel.

Then one wintry day in Minneapolis, I opened an email Charles had sent to the family. Using an infrared device mounted on his forehead, Charles tapped out letters on his keyboard to share ‘astonishing, miraculous’ news.

‘Dear Family,

…Petra is eleven weeks pregnant and all indications are that this is a healthy babe. We have a few hurdles to cross in the next six weeks to ensure genetic health, so please respect our privacy until we give all clear. But in the meantime, please do share with us in our excitement and hopes to bring another member of our collective family into this beautiful, impossibly beautiful, wondrous world. 

I know you all are now thinking what a total stud I am, given the circumstances, and what a hot, fertile babe Petra is, and what can I say, facts don’t lie.’

No one saw this coming.

Charles’s upbeat email sent shockwaves through the family. How could he and Petra possibly be pregnant? 

One of the great ironies of ALS is that, while it destroys all voluntary muscles, it was still possible for Charles to have and enjoy sex as a result of involuntary muscles. 

We knew this but never thought that they would deliberately seek a pregnancy. How could they bring another child into the world when their hands were already full with the caretaking of Charles – an around-the-clock job – and Celia, now a five-year-old?

Charles with his two precious daughters – Celia and ‘miracle baby’ Ella

After the family recovered from the shock of Charles and Petra’s news, we began to see the wisdom of their actions. 

Charles was many steps ahead of us, as always, thinking through a future without himself in the picture. He was deeply worried about Petra and Celia. 

Petra had devoted her entire being to looking after him and Celia. Her life, by choice, had been subsumed by the scrupulous care she gave Charles; the delicate tending to his countless bathings and feedings. Remarkably, he never developed a bedsore because of her constant vigilance. She met his every need. 

But what would Petra do without him? How would she fill the loss, the loss of the love of her life?

The answer came with this pregnancy – and baby Ella. Charles and Petra had had the good fortune to have another baby, an extraordinary blessing, so that Celia would not grow up alone. 

But Charles also knew, more tellingly, that Ella would keep Petra busy and moving forward. Ella would give Petra yet another reason to live. As it would turn out, Ella also gave Charles another reason to hang on.

He summed it up best when Ella was born. Gazing at her glorious being, he tapped out the words: ‘What a beautiful response to ALS.’

Ella was nearly eight months old when Charles died. Celia had just turned six. We all miss him terribly. 

As my sister likes to say, we all wanted more ‘dollops’ of Charles in our lives. But anytime I see a beautiful sunset, I think of Charles. Even as he weathered the storm of his life, his radiant light never stopped shining. It still shines on. 

I’ll See You In My Dreams: A Sister’s Memoir by Larkin McPhee is published by Koehler Books, June 10. May is ALS Awareness Month