What I Would Like to Say to People Who Tell Me How to Cure My MS

What I Would Like to Say to People Who Tell Me How to Cure My MS

It can happen anywhere, any time. Some well-meaning but misguided person tells you what you should do to cure your incurable, progressive disease.

They can descend on you while sitting at your desk at work, pushing a cart through the supermarket, meeting a friend of a friend at a backyard barbecue–or simply signing in to your Facebook page and reading a new post. Somebody will tell you to quit your diet soda habit and eat more kale to send your MS straight to Hades.

Whenever this happens, several responses run through my mind. Most are inappropriate and beneath me, however tempting they are. More on that later.

Resisting the desire to retort

While a snappy, risqué, obscene or violent response might appeal to the Burlesque comic in me–and worse, to my inner thug–I constantly remind myself of a thought shared by my esteemed colleague, Ashley Ringstaff, who once wisely concludedbut I held back because I don’t want to go to jail. I second that emotion, Ashley. Keeping my mouth shut does keep me out of hand cuffs. I’d like to imagine myself as a tough little priss, but let’s be honest. I fold up like a cheap accordion at the sound of a distant police siren. One night on a concrete slab without my evening dose of baclofen and I’d be modeling the homeliest straitjacket on the prison runway. Some tough I am.

The safer alternative would be to come up with some choice retorts and tell them to myself with the sound muted. Preferably in an underground bunker insulated with six inches of lead. If that sounds like overkill, think about the renewed dread of an impending nuclear holocaust that has settled over us all lately. These days, you can’t be too careful—or too paranoid. And now it’s easier than ever to lay in supplies. Just the other day I saw a commercial for survivalist packages of beef stroganoff. One carton will keep for 25 years, just add water. Amazing what they can do with freeze-dried perishables these days. Now if they could freeze-dry autologous stem cells and include instructions for how to reconstitute it and push it into our veins, we could emerge from the radioactive ashes alive and well, and free of demyelinating disease. Darn those cabalists who keep such knowledge from us.

Fantasy conversations

But back to the naughty responses we can’t say out loud to the know-it-alls. I’m sure you’ve all accumulated an arsenal of answers over the years. Really mean stuff, delicious in its vitriol. Here is one of my favorite fantasy conversations. It’s the tamest one in my black bag of evil.

This from an ignorant, reckless, irresponsible, arrogant know-it-all acquaintance named Helen (not her real name): “Kim, you should take hydrogen peroxide to cure your MS.”

Me: “Really, Helen? You seem to know an awful lot about it. Tell me, what solution strength would you recommend? One percent? Three percent? 35 percent? What dosage should I take? A teaspoon? The whole bottle? What dosage is effective? What dosage is safe?”

Clueless Helen says nothing. Her mouth hangs slightly open and her eyes glaze over. “Well, I’ve read that it cures MS.”

Helen’s equally obnoxious husband, Francis, chimes in with this sage bit of wisdom: “There is proof, but the pharma companies discredit it so they can give you drugs that keep you sick.”

Me: “You don’t say, Francis! Do tell!”

Francis: “If diseases were cured, the drug companies would go bankrupt.”

Me: “Wow, really. Can you give me an example of a drug company that went bust when a disease was cured?”

Francis says nothing. His mouth hangs slightly open and his eyes glaze over. “Uh . . .”

Me: “Okay, say a cure was found for MS. Whatever form it’s in, somebody is going to make a huge profit selling it. It’ll be in high demand indefinitely because, as you know, a cure is not a preventative. New cases would develop every day somewhere in the world. We would need to develop a vaccine to truly eradicate a disease once and for all. Like we’ve done for polio, small pox, malaria, diphtheria, measles, chicken pox, and HPV. And those diseases would come back within a cosmic minute if vaccines were discontinued.”

Now Helen has regained her composure: “You sound like a shill for big pharma.”

Francis: “Yeah, what she said.” He bares his teeth at me for emphasis.

Suddenly I’m feeling bloody. Very bloody. “It’s people like you that make my job a lot more difficult!” I screech. I take a deep breath and silently chant I don’t want to go to jail. I don’t want to go to jail. “It is reckless, dangerous, and irresponsible of you to walk up to a stranger with chronic disease and tell them what they should take,” I say more quietly but with a deep, acidic drawl. “I’m an advocate and I know better than to advise someone to take a substance without knowing their medical history, medications, or comorbidities. A vulnerable person might do what you say and swallow an entire bottle of 3% hydrogen peroxide from the medicine cabinet. They’d go to the ER with tissue burns at the very least. Would you want that on your conscience?”

Francis then bursts into tears, while his wife Helen glares at me. “You made him cry!”

I smile triumphantly. It is obvious to me that Francis was struck full force by the real possible consequences of his reckless arrogance and it horrified him.

One down, three million to go. Well, I can dream, can’t I?

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