GUEST COLUMN | AVERY/A compassionate plea

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EDITOR'S NOTE: The Editorial Board opposes Initiative 65 but believes there are legitimate concerns such as those listed here that deserve a better solution than political posturing.

My name is Sheila Avery.  I’m a 48-year-old mom to a son in private school, have a great husband, drive a nice car, and live in an upscale neighborhood. I live a seemingly idyllic life.  I also suffer from a rare genetic, neurological disorder called Primary Dystonia.  It affects my voice and ability to write, type, or text, which is physically painful and can be isolating.  

My symptoms started when I was six years old and progressed throughout my life.  It began with writer’s cramp, moved into my vocal chords, then into my neck to what is called Cervical Dystonia.  My head pulls involuntarily to the right, which is very painful.  If you can imagine a jar and someone twisting the lid off – my body being the jar and my head being the lid – that’s what it felt like constantly.  No medication put a dent in that pain.  

The leading treatment for cervical Dystonia is Botox, which fortunately works for me.  Not everyone with Dystonia is so lucky.  The problem is the injections have to be spaced out every three months, and as it wears off, the pain gradually returns. I don’t have a medication to “bridge the gap.”  I used to be on a benzodiazepine to provide an extra layer of relief on top of the Botox because, even with the injections, sometimes my neck is so stiff and tense that it feels as if there’s a steel rod in the top of my spine.  But two years ago, my medication was abruptly pulled from the market by the manufacturer and my body wouldn’t absorb any of the other available options, so I was thrown into what’s called tolerance withdrawal.  Despite being so careful for eight years while taking this medication, and many times taking less than my daily prescribed dose, my body had become physically dependent.    

What followed was a horrific nine-month taper.  My body had been ravaged by the long term use.  And, I still had to deal with the Dystonia. I’ve been off the medication for over a year and I’m still healing.  If Mississippi had a medical marijuana program, this very likely wouldn’t have happened because Cervical Dystonia patients all over the country have been using medical marijuana for years to treat their chronic pain and muscle spasms.  Mississippians deserve a better option.  

I never thought I’d be in this situation.  I’m not a drug user or seeker.  I’m not an addict. I could have mentally stopped the medications at any time but my body wouldn’t let me, and stopping abruptly can cause side effects such as seizures and even death.  

I hope sharing my story helps the thousands of people who could finally get relief and also prevent others from having to go through what I have experienced.  I’ve been waiting to have medical marijuana as an option for so many years and here is our chance.  Please VOTE for INITIATIVE 65, not the politicians’ Alternative 65A, which has no list of qualifying medical conditions and only protects terminal patients. 65A doesn’t even have a start date. There are zero guarantees in 65A. Initiative 65 has a specific list of 22 qualifying medical conditions and would start immediately – as soon as voters approve it.  You might just be helping your friend, your neighbor, your parent, or yourself.  Thank you!  

Sheila Avery is a Madison mom.


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