The lupus advocate who changed my perspective about the ‘Wolf’
A columnist chats with lupus advocate Toni Grimes
Six years ago, I met retired Army Maj. Toni Grimes at a busy Phoenix coffee shop. It was my first conversation with a lupus advocate since my own diagnosis in 2016.
I made it a point to arrive before her. I needed to soothe a sneaky, queasy feeling that could’ve indicated a brewing flare or meant absolutely nothing. The combination of being active the night before, getting little sleep, and courageously hopping into an Uber the next day had me overly conscientious and praying I hadn’t already “overdone it.”
I ordered a pomegranate lemonade with no ice and a mug of hot water. I sat as far away from the windows as possible. Then, I dropped a tea bag to seep in the water, added a solid pump of honey, and pleaded with the Wolf to stay at rest. (“Lupus” is Latin for “wolf.”) From years of hospitalizations and high disease activity that left my stomach tender, I knew two things for sure: One, I could trust the lemonade, the green tea, and the pickle I had tucked away in my bag; and two, sitting away from the Arizona sun could stall a flare.
A new mindset
While I waited, I scanned my notes. Toni Grimes: a national advocate with the Lupus Foundation of America; a local support group leader; an Afghanistan veteran; and a policy spokesperson for the foundation’s education committee who has “unflagging dedication.” I prepared my recorder and notepad, tucked my ballpoint pen into my hair, sipped my drinks, and breathed deeply. No longer than 10 minutes later, Toni walked in with a height and frame that were smaller than I’d expected.
Her life transcends lupus. Toni had been a major in the U.S. Army en route to becoming lieutenant colonel when the disease clawed in with nephritis (kidney inflammation), neuropsychiatric lupus, and central nervous system damage, leaving her in a vegetative state. Sadly, that path is one that I could easily and unexpectedly have to endure because of lupus.
During our conversation, Toni didn’t harp on those struggles. Instead, she repeated, “I love lupus.”
I didn’t share her sentiment, and I couldn’t intuitively agree with her love of lupus. Honestly, I still don’t believe it’s possible to love lupus, a chronic autoimmune disease in which the immune system attacks healthy body tissues, causing inflammation and organ damage. How could I consider loving something that had tried to kill me three times?
More than a year earlier, lupus flares had confined me to my brother’s old bedroom in my childhood home, unable to care for myself or my family, with very little mobility, and consuming nearly 100 pills daily. Fentanyl patches failed to manage the chest pains, and I suffered under the watchful care of my parents, husband, and children. We didn’t understand the potency of my fentanyl doses until Prince died with it in his system.
So you can imagine my alarm at an Army major proclaiming, “I love lupus!”
Side eye. Nah, sis.
But I listened as she provided the first candid, genuine, open-hearted truth that has helped me to see value in living with systemic lupus erythematosus, Sjögren’s syndrome, psoriatic arthritis, and thalassemia.
“I love lupus,” she said again, seriously. “Lupus changed my life! Lupus has taught me to truly love myself, to love my life. It’s taught me to live!”
Through years of adjusting and readjusting my life entirely within the confines of a debilitating disease that could (and has tried to) render me disabled or deceased, I can now relate more to Toni’s reasoning.
It became a new perception and a more mature mindset for living with lupus and taming the wolf that it is.
Then, I read Lucille Clifton’s poem “won’t you celebrate with me”:
won’t you celebrate with me
what i have shaped into
a kind of life? i had no model. …
my one hand holding tight
my other hand; come celebrate
with me that every day
something has tried to kill me
and has failed.
Lupus has tried and tried and tried to kill me and has failed.
Do you hear that?
Yes!
Lupus. The brutal wolf. Has. Failed. To. Kill. Me.
Ha! Now we celebrate!
This is the impetus for this column.
Here, I’ll record how lupus has indefinitely changed lives — mine and those of others — and the strategies we use to live, to love, to parent, to create, to find purpose, and to succeed while being differently able. Paramount are stories about victories within the tumultuous, painful days. No, this is not a space for narratives that scream happy-go-lucky, overly optimistic, mind-over-matter, we-are-survivors-and-thrivers mantras, because those are far from my reality with lupus. I will share these truths, and we will celebrate another day that lupus has failed.
This column, titled “Celebrate with Me,” will genuinely reflect stages of diseases that often behave like murderers and how I choose to live until I can’t.
Won’t you celebrate with me?
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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