ADAM’S NOTE: This blog has been graced with many insightful guest posts over the past 10 years and I highly recommend them all. Today’s guest post was written by trilingual speech-language pathologist Ana Paula Mumy and I feel honored to be able to share such a heartfelt and moving message. In fact, this is the fourth article that Ana Paula has written for Bilingual Monkeys and all of them are must-read posts:
Ana Paula’s bilingual journey with her family is also featured in my book Bilingual Success Stories Around the World.
Ana Paula, thank you so much for sharing your personal experience and professional expertise with all of us in so many helpful ways!
X’unei Lance Twitchell, professor of Alaska Native Languages and language revitalization advocate, once said, “Our language is everything. It’s the air we breathe. It’s the blood that flows through our veins” (as cited in Ohle & Bartels, 2016, p. 2). I did not come to understand the depth and beauty of these words until the end of my parents’ lives.
An Unexpected Friday
It was a normal Spring Friday in May of 2019 when I got the call. My niece’s birthday dinner was interrupted with the news that my mom had suffered a car accident. Another unexpected occurrence in a line of unusual and recent events—getting lost driving to a friend’s home, dressing herself in mismatched clothing, misplacing and losing cash, forgetting everyday things. She was already scheduled to see a neurologist, but long waitlists made the appointment a bit far off. When I arrived at the hospital in Texas, I was not prepared for what I was going to hear. A CT scan revealed glioblastoma in an advanced stage, one of the most aggressive and deadliest types of primary brain tumors. I sobbed uncontrollably in the waiting room, unable to contain my sorrow in that moment. She was scheduled for surgery shortly after, but the prognosis for survival or quality of life post-surgery was grim. All we could do was surround her with love, care, and the assurance that we would walk with her through this diagnosis.
The surgery was as successful as it could have been, but behavioral changes due to impacted areas of the brain were quickly evident. Even so, she was happy to be alive, and we were hopeful that she would become strong enough for chemotherapy in the near future. Within two weeks, however, she developed shingles, and the outbreak kept her confined to her rehabilitation room. We were not prepared for the quick decline within that period of quarantine and isolation, as she went from walking with the assistance of a walker to needing the aid of a wheelchair. My siblings and I were still present with her daily, though through a regimen of safety procedures including the use of gloves, protective clothing, and sanitation. We watched her favorite TV shows, read the Bible and sang hymns together, and had pleasant conversations about our lives and her beloved grandchildren. We were still hopeful for recovery and more time with her, but within 6 weeks, the cognitive and behavioral changes were even more pronounced, and she entered a state of terminal restlessness, where she was intensely agitated, often scared, and filled with anguish. Her medical team provided comfort through gradual sedation, and we knew the end was near.
One hot Sunday afternoon in July, our dad, who was living in the same nursing facility due to advanced Alzheimer’s disease, became adamant that he wanted to see her. Due to his memory loss, cognitive decline, and agitation, I was a bit concerned that he wouldn’t understand why she would be lying there unresponsive, but his words and actions demonstrated he needed to see her. When we stepped into the room, to my utter shock, he was completely lucid. In that moment, he understood exactly what was happening. I was able to briefly explain the events of the past few weeks—the diagnosis, the surgery, the post-surgical illness, and her speedy decline—all of which he had been largely oblivious to prior to that moment. We both cried as he held her hand and stroked her arm in disbelief. He poured out his heart, professing his love for her and the sorrow he felt in our helplessness to save her. It was the most gut-wrenching yet beautiful moment I have ever witnessed. I firmly believe God granted him a moment of lucidity in order to say goodbye. My mom passed away the next morning, and he had no recollection of what transpired the night before.
Returning to Twitchell’s beautiful quote, what does all of this have to do with language? You see, all the events I just described occurred in our native language, Portuguese. When we immigrated to the US when I was 10, my mom was adamant that we maintain our Portuguese skills. She intuitively knew that if we (her children) lost our ability to speak Portuguese, we would have become like strangers in our own home. It took my parents years to learn and feel comfortable speaking English, and even though there was outside pressure for us to “switch to English” at home so that their English would progress faster, Portuguese remained our language of communication. It was a non-negotiable for my parents because that was our HEART language. That was the language my parents could fully express themselves in—their love, care, beliefs, values, fears, aspirations—everything that was important to them. In 30+ years of living in the US, our language of communication was always Portuguese. English interactions with them felt awkward and unnatural. Imagine that Sunday afternoon with my dad had I lost my ability to speak Portuguese? I wouldn’t have been able to capture that divine and beautiful moment or been a source of strength for my dad in his hour of grief.
Unanticipated Professional Rewards
Three months after my mom passed, I was invited to speak at the Brazilian stuttering association conference due to my work as a speech-language pathologist and advocate for the stuttering community. We were debuting a documentary film produced by a colleague entitled, WHEN I STUTTER, which provides educational vignettes about stuttering and details the lived experience of stuttering through the lens of multiple individuals who stutter. With the help of a Brazilian colleague, we translated the film into Brazilian Portuguese and launched its release in honor of International Stuttering Awareness Day (ISAD), which occurs every October. As I stood there in my homeland speaking before a large audience of Brazilians, I couldn’t help but think of my mom. I was overwhelmed with a sense of awe and gratitude for her foresight and care to pass down our language and culture. Because of her, my Brazilian heritage is of great value to me, and I have continued to enjoy the rewards of my Portuguese skills through other professional collaborations involving translation, research, and scholarly works.
What Alzheimer’s Didn’t Take Away
My dad’s Alzheimer’s continued to progress after my mom’s passing, and he became more and more disoriented, agitated, and disconnected. Conversations with him were surface level and repetitive interactions, but he still enjoyed being read to, listening to Portuguese music, singing, and recounting distant stories from his past. At one point it was evident that he either lost his ability to speak English, or at the very least, his desire to speak it. It seems that some language loss did occur because he often seemed confused when nursing staff spoke to him in English, and he even appeared scared at times when he didn’t know what was being said or asked of him. This sometimes led to “combative” behaviors and unpleasant interactions with English-speaking health care professionals, and his care became harder to manage. In those moments of confusion, agitation, and combativeness, the only thing that would pacify him was a familiar voice speaking a familiar language. We found amazing Brazilian caretakers that were willing to assist with his daily care in the nursing facility, and that improved his quality of life significantly. In the end of his life, the soothing balm, if you will, was Portuguese, and the ability to interact with his Brazilian caretakers, friends, and children. Because we (his children) maintained our home language—our heart language—we were able to actively help and meet his needs in his final season of life when he needed us most. My dad passed away on his birthday in December of 2020, but I am filled with gratitude for the time we had together on this earth.
Language truly is everything. It’s the blood that flows through our veins. I dedicate this writing to every parent who is passing down their language and culture to their children, particularly if your community language is more prestigious and different than your home language. Your journey is often hard and mundane, but your intentional and dedicated efforts will produce great rewards!
Ohle, K., & Bartels, J. T. (2016). Using dual-language books to preserve language & culture in Alaska native communities [Conference session]. Alaska Native Studies Conference 2016, University of Alaska.
Again, I highly recommend these other guest posts by Ana Paula Mumy…