You’re only given a little spark of madness. You mustn’t lose it.

Robin Williams

The Meaning of Madness

For months this Robin Williams quote had been sloshing around my mind. It was one of those things that strikes you suddenly, plainly and fully ceasing your movement and thoughts when you come upon it. At first I couldn’t discern why it seemed important.

In spring of 2019 I began piecing together this blog. I had plenty to say and even more to write about the topics of caregiving, dementia, and humanity, but I couldn’t decide on what to call this project. There has been an expanding list of witty and thoughtful title ideas, but nothing felt like “the one”. Only after borrowing a copy of Dave Itzkoff’s biography, Robin, and falling gladly into a rabbit hole of yet-to-be-seen (by me) Williams movies, did it occur to me that the name of my blog had been born long before my stupor of creativity had commenced.

Little spark of madness.

The duality of the word “madness” feels perfect for the conundrum that is dementia. Depending on the context, madness can have both negative and positive connotations.

Robin’s quote is meant to invoke your sense of individuality, your uniqueness. Yes, humans certainly have a lot in common with each other, but simultaneously we are distinctive. That madness, what some may think of as spirit or soul, is what makes us us. Robin’s madness was more apparent than most, which is part of why he is unforgettable and beloved globally.

Despite my mom being slowly overtaken by Alzheimers she still has her own brand of madness. Blue continues to be her favorite color on the spectrum. Three times a week you can find her swimming laps in a pool, the draw to water stronger than any disease’s dictatorship. Innately social, she chats up strangers and familiar faces with an enviable ease. Her slightly morbid sense of humor shines through the dementia fog and embarrasses me with surprising consistency. Music makes her feel alive, makes her madness glow.

And then there is the dark matter of madness.

mad·ness/ˈmadnəs/noun

1. the state of being mentally ill, especially severely. synonyms: insanity, insaneness, dementia, mental illness, derangement, demendtedness, instability, unsoundness of mind, lunacy, distraction, depression, mania, hysteria, frenzy, psychosis, psychopathy, schizophrenia, hydrophobia anytonyms: sanity
2. extremely foolish behavior. synonyms: folly, foolishness, stupidity, insanity, lunacy, idiocy, irrationality, unreasonableness, illogicality, senselessness, nonsense, absurdness, absurdity, silliness, inanity, ludicrous, wildness, preposterousness, craziness antonyms: common sense, good sense
3. a state of frenzied or chaotic activity. synonyms: bedlam, mayhem, chaos, pandemonium, babel, uproar, turmoil, wild disarray, disorder, hurly-burly, scene of confusion, madhouse, tumult, jumble, pell-mell, hullabaloo, whirlwind, maelstrom.

I imagine anyone who has been a close witness to dementia, most especially when it’s taken hold of a loved one, can easily select a dozen of the above definitive words as identifiers of the disease. Despite the quirks that make her unique, my mom is not exactly herself anymore. So many things about her are illogical now, different from the person I knew for decades previously. The capable, independent, self-sufficient woman has been muted.

The blessing of dementia is that for the most part the person who has it is blissfully unaware of their madness. For everyone else around them the madness is not hidden, but smoldering, then somehow horrifyingly ablaze. It is the kind of fire that no one can put out. Instead you’re forced to stand beside it watching with horror, the flames encasing its victim in a tortuously slow embrace. Caregivers hold the afflicted’s hand, helpless to fix but offering support nonetheless, thus sustaining partial burns of their own. Others watch from sidelines in shock, unable to speak or act.

As my mother’s sole caregiver I often experience my own sort of madness. Sometimes I am literally just mad, angry and frustrated. Many days I am overtly conscious of the “Groundhog’s Day” repetition of conversations and routines with her. On occasion when I hear well-intentioned advice or stern demand as to how/in what way/when I should be handling Mom’s care, I want to scream, in spite of what is socially acceptable behavior. Or during the vulnerable moments when I express the nuanced pains of her declining health, I can see it in the listener’s eyes that they don’t “get it”. It’s not the listener’s fault. In fact, I am glad that they have yet to know dementia up close, but it doesn’t make for a satisfying conversation when you don’t feel like you’re being wholly understood. Perhaps the most maddening aspect of all is that Mom is dying. The catch is that it usually takes years to succumb to dementia. Not that a quick death is better or less devastating by any means, but there is a particular awfulness to watching someone die for days and then months and then years.

I hope my intention for choosing “Little Spark of Madness” is clearer than when you first read the title. We all have madness within us. Sometimes it’s hidden, sometimes we suppress it. Some embrace it with grace and confidence. And sometimes that madness turns wild and primitive in the form of dementia, drowning out the little spark that started us all.

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