Minnesota Prairie Roots

Writing and photography by Audrey Kletscher Helbling

Vestibular neuronitis: Challenges, info & a trip to China June 2, 2023

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A turtle, rather than a tortoise, used for illustration only. (Minnesota Prairie Roots copyrighted file photo June 2020)

I TOOK A FIELD TRIP TODAY. Not the fun sort like my granddaughter, Isabelle, took Thursday to see a performance of “The Adventures of Tortoise and Hare” at the Ordway in St. Paul. Rather mine was into the outdoors, outside a physical therapy office in Faribault.

Friday marked my seventh vestibular rehab therapy session with Ryan at Courage Kenny. I started weekly therapy in mid April after being diagnosed with vestibular neuronitis and Meniere’s Disease. These are complex diagnoses which affect the vestibular system in my right ear. (Click here to read an earlier blog post that details my many symptoms.) Basically, therapy is retraining my brain to handle the deficiencies I’m now experiencing due to damage to my eighth vestibular nerve. And to think this all started with a viral infection in January.

Back to today. Typically I meet with my physical therapist in a small room where we review my symptoms and progress and I learn, and practice, new exercises. Last week we ventured into a long hallway so I could walk back and forth, moving my head from side to side and then up and down. I didn’t do so well, veering to the left and into the wall. But I practiced at home all week, as I do all exercise homework Ryan assigns, and I felt I was doing better. I am determined to do everything I can to reclaim my life, or at least some version of what life was before these health issues.

A scene at Falls Creek County Park, rural Faribault, used for illustration only. (Minnesota Prairie Roots copyrighted file photo May 2022)

OK, WE’RE TAKING THIS OUTSIDE

Then Ryan announced we were going outside to try this walking and head turning activity on the sidewalk. I started out not so well, again steering left. Being outdoors added sensory input I wasn’t used to experiencing inside a small room. This exposed me to a real world environment. One with chirping birds and traffic and people crossing the parking lot and trees and clouds. Just a whole lot for my brain to try and manage. Once I’d semi-managed the sidewalk, we moved onto the lawn. Another new landscape to take in while I moved my head and attempted to walk a straight line.

That was my field trip. A change-up from a controlled environment. My ability to handle my symptoms has assuredly improved with therapy as Ryan nudges me to push myself more. And I am. I’m out and about some now, trying to do things I once didn’t think twice about doing. Trips to the grocery store, big box stores, a walk in the park, doing photography, simply being among people. It’s not always easy, especially when symptoms flare. Sometimes I fail. I recognize my limits. That includes time on the computer. Too much online time and my head begins to hurt, my vision blurs, I see double. Because of that, I’ve been publishing fewer blog posts.

This is how I feel sometimes. Artwork close-up by Bill Nagel. (Minnesota Prairie Roots copyrighted file photo)

YES, IT REALLY IS IN MY HEAD

Yesterday my dear friend Beth Ann, whom I met when she lived in Iowa but who now lives in North Carolina, blogged about vestibular neuritis/neuronitis. I had no idea she was going to write this and then designate the Vestibular Disorders Association as the beneficiary of her monthly “Comments for a Cause” project. (Please click here to read Beth Ann’s well-written, informative blog post.)

Each month Beth Ann chooses a different group or nonprofit to feature and support with a financial gift. I was humbled by her desire to increase awareness of vestibular issues. And, bonus, she enlightened me about the Vestibular Disorders Association which, at quick glance, will be a valuable resource as I navigate my diagnoses. I feel validated just scrolling through the website, like I want to shout, “This is real! This isn’t just in my head. It really, truly is in my head!”

Merchandise vended by an international singing group that performed in Faribault and used for illustration only. (Minnesota Prairie Roots copyrighted photo July 2014)

GOING TO CHINA WITHOUT GOING TO CHINA

Earlier this week I endured an MRI per my neurologist’s orders to assure nothing else is going on inside my brain besides the already-known. I get results on Wednesday. He’s confident nothing additional will be found and I hope he’s right. While in that machine for an hour trying to manage the blasts of overpowering noise (I’m hypersensitive to sensory input), I remembered Ryan’s advice to “dig deep” to get through the procedure. I think I dug a hole all the way to China.

 Next week I will need to dig deep again to get through another hearing test, followed by an appointment with the ENT given persistent, intermittent ear pain and more. I’m documenting my symptoms (once a reporter, always a reporter). And I’m hoping for answers as I press onward, preferring not to travel internationally again.

© Copyright 2023 Audrey Kletscher Helbling

 

An obituary that needs to be shared January 18, 2023

Filed under: Uncategorized — Audrey Kletscher Helbling @ 5:00 AM
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This is a partial photo of Mark DeWitte’s obit published in The Gaylord Hub. I intentionally focused on the information in column two, middle paragraph. (Minnesota Prairie Roots edited photo January 2023)

HE LIVED THE BEST LIFE POSSIBLE.

That statement in the obituary of a 52-year-old Gaylord man may not seem extraordinary. He died on December 21, 2022, of cancer. But nowhere in Mark DeWitte’s obit does it state that he died after a courageous battle with cancer as is commonly seen in death notices. The only references are to a recent diagnosis and a move home to be with his family while in hospice.

Rather, the health diagnosis which led to that living the best life possible assessment is schizophrenia. Mark was diagnosed at the age of 16, which means he lived with this awful, debilitating brain disorder for 36 years.

DISPELLING THE MYTHS

That Mark’s loving family chose to publicly reveal his schizophrenia in print speaks to the depth of their love, their support and their courage. The misunderstandings attached to this disease all too often create fear and stigma, adding to the challenges of what is already an overwhelming health condition. Visions of violence, split personalities and other negative behaviors too often color schizophrenia with untruths. The National Alliance on Mental Illness defines schizophrenia as “a serious mental illness that interferes with a person’s ability to think clearly, manage emotions, make decisions and relate to others. It is a complex and long-term medical illness.” (I encourage you to read more details about schizophrenia on the NAMI website by clicking here.)

It should be noted that schizophrenia manifests differently in individuals and, although incurable, can often be managed with medication, therapy and more. Managed. Not cured. It’s not easy, but it’s possible to live the best life possible. Mark clearly did that within the confines of his symptoms. But he didn’t do it alone. He had a family who loved him, a community that cared and professionals who supported him. For the past eight years, Mark lived at Aveyron Homes.

Mark’s obituary offers glimpses of what brought him joy: Music. Going out with his brother Mike for beer twice a week. But, most of all, his family brought him joy.

RIPPLING INTO THE FAMILY

Schizophrenia, like any other long-term health issue, affects the entire family. The DeWitte family acknowledges that, not in any specific statement but rather in their willingness to write about their loved one’s life-long disease. Too often, we fail to recognize or even acknowledge the challenges of a serious mental illness and how it affects those dealing with and touched by it. Generally, there are no meals delivered during a mental health crisis. No “how are you doing?” questions or offers of help. Minimal, if any, compassion. Rather, the reaction is often one of silence, as if not speaking about “it” negates the need to show care or attempt to understand. There are exceptions, of course, and we as a society are slowly shifting towards understanding and acknowledgment and reducing stigmas about mental illness. Still, mental illness remains mostly hidden.

BREAKING THE SILENCE

Mark’s family is breaking the silence via their openness about his schizophrenia. It’s clear from a follow-up public thank you published in their weekly newspaper, The Gaylord Hub, that the community supported them. Linda DeWitte (Mark’s mom) and Michael DeWitte thanked the community for food, cards, flowers, memorials and even for snow removal. I can only assume the community also supported them when Mark was alive.

That Mark lived the best life possible while living with a horrible horrible disease comforts me. His family may not have stated that he died after a courageous battle with schizophrenia. But in my eyes he did.

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FYI: I encourage you to visit the National Alliance on Mental Illness website (click here) to learn more about mental health issues like schizophrenia, bipolar, depression, anxiety, post traumatic stress disorder and more. NAMI offers information, support and help, including online and in-person support groups. Check your state’s NAMI organization for specifics. NAMI is a valuable resource that can grow knowledge, compassion and understanding.

© Copyright 2023 Audrey Kletscher Helbling

 

Focus on mental health: The family living along Hidden Valley Road May 10, 2021

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…I THOUGHT I WAS such a good mother. I baked a cake and a pie every night. Or at least had Jell-O with whipped cream.

That quote from Mimi Galvin, mother of 12, struck me as particularly personal and profound in a 377-page book focusing on one family’s experiences with schizophrenia. Six of Mimi and Don Galvin’s children developed schizophrenia, labeled by author Robert Kolker as “humanity’s most perplexing disease.”

Kolker’s Hidden Valley Road—Inside the Mind of an American Family rates as a difficult read. But this 2020 Oprah’s Book Club pick is something every single person should read to understand the depths and intricacies of a biologically-based brain disorder like schizophrenia. And how it affected one Colorado family with children born between 1945-1965.

But back to that quote and the context thereof. Doctors and others blamed Mimi for her sons’ mental illnesses. Their criticism left her crushed, traumatized, paralyzed, ashamed. Feeling all alone and guilty, as if she wasn’t a “good mother.” Such was the accusatory thinking of medical professionals. Mothers, especially, were targeted and even labeled as “schizophrenogenic mothers.” Can you imagine? Movies like Alfred Hitchcock’s Psycho (released in 1960) reinforced that theory with Norman Bates’ mother blamed for his delusional homicidal mania.

This was also the era of shock therapy and restraints and so much misunderstanding and horror. Even unafflicted Galvin siblings wondered why their brothers couldn’t simply snap out of it. That thought pattern seems almost laughable, even absurd, to me. Yet, too many people still think that. Why can’t someone simply shut out delusional thoughts and paranoia, stop talking gibberish, separate perception from reality, silence the voices in their head, go to sleep rather than stay awake all night…? And more, much more, detailed with heartbreaking truth in this story of the Galvin family.

This family experienced heartbreak almost beyond belief. Tragedy. Abuse. Violence. Disconnect. Feelings of abandonment. So. Much. Trauma.

If I ended this review now, you would likely feel incredibly disheartened, wondering why you would even want to read such a book. And you would be justified in thinking that. But this story of an American family in the thick of schizophrenia is also inspiring. Hopeful. The Galvins allowed researchers to study their DNA, to learn more about “humanity’s most perplexing disease.” A disease centered in the brain. A disease with genetic markers. Mutations. A spectrum illness. No more mother/parent blaming.

I won’t attempt to further explain those scientific findings. I’m not, as I term myself, a medical person. I had to read and reread the medical parts of this book. But I grasp the basics. That researchers, although too often hindered by lack of funding (including from pharmaceutical companies), continue to work on researching and understanding schizophrenia, on finding better medications to treat symptoms and, ultimately, to prevent the onset of this horrible disease.

I encourage you to read Hidden Valley Road. You may struggle to get through this story. But press on. And then, when you’ve finished, vow to love, support and encourage anyone dealing with mental health issues. And their families.

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FYI: May is Mental Health Awareness Month. If you or someone you love is struggling with mental health, seek help. The National Alliance on Mental Illness, which originated in Minnesota, is a good place to start. I will continue to do what I can to advocate, educate and increase awareness.

I invite you to read three previous reviews I’ve written on books that focus on mental health:

Fix What You Can—Schizophrenia and a Lawmaker’s Fight for Her Son by Mindy Greiling

Behind the Wall—The True Story of Mental Illness as Told by Parents by Mary Widdifield and Elin Widdifield

The Crusade for Forgotten Souls—Reforming Minnesota’s Mental Institutions, 1946-1954 by Susan Bartlett Foote

© Copyright 2021 Audrey Kletscher Helbling