Katrien Goethals

This article originally appeared in the Winter 2023 issue of On The Level.

“On Christmas Eve 2021 my life changed in a snap. I went from a physically and mentally active 54-year-old woman to someone who was barely able to function in a matter of weeks.

“What started as ringing in one ear eventually led to 24/7 dizziness.” Katrien’s tinnitus continued to worsen, and she had a never-ending feeling of floating through the air. “I felt like I was constantly moving even when I was in bed. At times I barely dared to open my eyes as the ceiling was spinning around and around.”

It took visiting seven doctors before Katrien learned what was happening to her. She was diagnosed with Vestibular Neuritis, Persistent Postural Perceptual Dizziness (PPPD), and Vestibular Migraine.

Before the Dizziness

“Before this all happened, I was a busy person.”

Katrien is originally from Belgium where she worked and taught in international environments before she eventually moved to the United States. Prior to the dizziness she was involved in multiple academic projects in political communication and she wrote articles on US politics.

“Being on weekly panels at an academic institution where I could give European perspectives was something I was looking forward to. But I was not able to participate in any of it.”

Her condition also interrupted the work she was doing as an advocate for people with dementia and their care partners.

“I was the sole caregiver to my mom who had early onset dementia – in some cases also one of those invisible illnesses. I helped lift the stigma on the disease by raising awareness through writing, making a podcast, and presenting at conferences and events. I wanted to write about all the unsung heroes: the caregivers who do such a wonderful job taking care of a loved one but are always forgotten. I just wanted to put them in the spotlight for a change. Needless to say, that was put on hold… for now.”

Living with Limitations

Katrien Goethals staring out a windowKatrien’s career wasn’t the only thing put on hold due to her condition.

“I miss so much! I miss myself dancing, putting my music on, and singing along. I miss hanging out and laughing out loud with my girlfriends, just having fun. Laughter and humour made up such a big part of my life. My puns were my hallmark. I miss that so terribly.

“My vertigo and dizziness made it impossible for me to read for months. Whenever I tried, the letters were not sticking to the lines, they were floating around, I was not able to read one sentence. It drove me absolutely insane. More than once I threw a book from my bed onto the floor in desperation. Writing was even harder. I could not even look down, so I gave up and let it go. I listened to podcasts and I recorded messages on my phone. It was frustrating, but it helped.

“I need to be aware of and set my boundaries and limitations. Too much too fast just does not work. Believe me, that was – and still is – one of the hardest things. I am so longing to be able to ride my bike and start dancing again, but my body cannot handle it YET. NOT YET. VeDA and some survivors taught me that changing phrasing to ‘I cannot do that yet’ instead of ‘I cannot do it’ helps psychologically – and it does!”

The Path to a “New Normal”

Despite the limitations of her condition, Katrien is getting the treatment she needs and is on the path to finding a “new normal.”

“After three months in bed, I was able to do more vestibular therapy in order to retrain my brain. I had to learn how to walk again, move my head, and everyday tasks like getting out of a chair or bed, turning around, even taking a shower, and washing my hair had become a challenge.

“Nowadays it has become easier although I am not back to my ‘normal’ speed. I still need to take breaks every 5 to 10 minutes. I volunteered to do a translation the other day and a text that would have taken me normally an hour to an hour and a half took me two weeks! I must admit, as I was sitting at the table, I shed a tear several times wondering when I would be able to do that again.

“Overall, I am heading in the right direction; I cannot ride my bike, dance or do any other high-performance sport but I can walk again. I may not be able to write an article, but I can write a paragraph at a time and reading has become easier. I cannot meet a group of friends, but I can see one or two. I may not be able to travel far by car, but I can go on a plane as long as I go to easy airports, rest, and take my rescue medicine. I try to be positive, but the tough times are the flare-ups – which still occur almost half the time.

“I am getting out of the darkness. Back to some normalcy, although I no longer remember what ‘normal’ is. Fortunately, I found VeDA who, with their excellent website and information, guides me almost every day with tips on how to navigate this dizzy life.”

A New Perspective

Katrien GoethalsThrough all the dizziness and suffering, Katrien has gained a new perspective on life and what really matters.

“I know I have a long way to go still but I also know I will be getting better. Those months spent in bed gave me plenty of time to think about my life – who and what is important.

“If this disorder gave way to giving me more meaningful relationships, then I am all in! I am almost 56, I know life can change in a snap and I should really enjoy and cherish every single special moment I encounter whether it is a beautiful smile from someone, a kind word, a hug, precious time spent with the people I love (especially our boys), the smell of a fresh, crisp morning, the butterflies in our garden, or anything else that makes me happy.”

As Katrien continues to recover and adjust to her new normal, she finds joy in her daily life.

“I put my music on, read, and write some. It feels good to feel alive again and if there is anything this disorder has taught me it is to enjoy all small moments in life.”