My Story


This is a story I’ve told probably a thousand times. I sort of have to in order to explain certain things. But I’ve never put it in writing, so this should be interesting.

In 2001 I began a rather promising career in computer and systems engineering. I was at the beginning of my  true adult life. Ready for the world, armed with an education from Saint Louis University. I had my whole life ahead of me.

I got a job I was over qualified for with Reuters. I didn’t care. It was Reuters, and the first month I worked there I was called into my manager’s office. What the fuck did I do, I was thinking. He told me ‘they’ felt they had started me too low. (Um, yeah! 29,5?) He told  me they wanted to give me a  $3k raise. Well, still not enough for what I was worth based on my skillset, but better. And out of the blue. Can’t complain about that. Within 6 months I was offered a job in QA Software engineering. $20k raise. I took it. It was boring as fuck, but I was closer to doing what I was taught to do. From there I was transferred to software engineering. Another  $10k raise. Finally where I should be.

All this time I was battling alcoholism. My job was flex-time  (come in whenever you want, within reason, and leave when you want. So that unfortunately helped me hide the problem pretty well. With my pay my ex husband and I lived rather well. That didn’t help either. Ecstasy and blow every other weekend, booze not an issue, none of it dented my income.

But my drinking problem progressively got worse, as these things always do. Eventually I couldn’t manage to keep my grip on my awesome job and was fired. I was stunned. I never had a bad performance review, and my work was exemplary, so I was frequently told. But there just wasn’t enough of it.

I had enough in savings to last a year. I wasn’t really worried about money. But all that time I wasn’t just battling alcoholism. I was battling major depressive disorder for which I had never bothered to  be treated for.  So with my job loss I sank into a very deep depression. I barely took any time to look for other work. why should I? I had plenty of money in the bank. My ex husband trusted me implicitly. Never questioned what I was doing with my time. What I was doing was drinking constantly and playing video games. But my depression was doing something extremely dangerous for an alcoholic. I wasn’t eating. Eventually nothing at all. I was literally living on beer. About 25 a day. Sometimes more.

Alcohol is hyponatremic. Meaning it causes you to piss out your sodium. Combine that with not eating and you end up with low blood sodium. Sodium is critical for the nervous system. It’s an electrolyte. It carries electricity between neurons. My husband faithfully made dinner every night and placed a plate of food on my desk in my office/gaming and disintegration room, and it always went untouched. I’m not sure what he thought of this, but he never said anything about it.

Eventually my sodium level dropped to a critical point. I found out later just how critical. I was climbing out of bed one day and had a seizure. 911 was called and I was taken to the hospital. Dan sat comfortingly in the room. I told the nurse I was very nervous and asked  for a Xanax. She obliged without question. Next thing I remember I was in the neurology unit. I was decently mobile.  For about 2 days. Then things seemed normal to me, but to everyone else I was slowing down. My speech, my movement, everything. The last thing I remenmber is being taken to have an MRI. I had gone into what looked like a coma.  An EEG revealed it was actually Locked-in syndrome. A total paralysis of the body, but the mind is still functioaning fully. Its im portant to note that this condition is NOT supposed to occur when a patient presents with low sodium. It is caused by overly rapid correction of sodium. Sodium should be corrected at no more than 10-15 ml/dl per day. I later found out they were correcting mine at as high as 20-25 ml/dl per hour.  I spent almost 4 months in this state (if you want to know what it’s like, leave a comment. I’ll tell you. It’s rather amazing.)

When I slowly came back to reality it was explained to me why I had a trache in my neck  (I had been in ICU 3 times with pneumonia, why there was a feeding tube in my stomach (i couldn’t eat obviously) and just wtf was wrong with me. My muscles had atrophied to an unbelievable extent. I could barely raise my arm.

Through 4 more months of physical therapy I learned to walk, talk, eat and do basically everything all over again. When I finally got home I learned just what kind of man I spent 9 years loving and supporting. It seemed that the lifestyle he had grown accustomed to, that I could no longer provide, was more important to him. He left me 3 weeks after I got home.  I was still wearing a LifeAlert necklace.

In the end, the damage to my brain was relatively minor. Hand tremors, and most disappointingly, my once beautiful and flawless speech had been utterly decimated. I suffer from dysarthria. Basically my fine motor control was badly damaged. And speech is a very fine motor function. My hands could no longer type at my previous 90 wpm, now maybe 4. So my career was over. I now live on disability. Fortunately it’s rather high because I was a high earner. On the bright side my MDD is very well managed, and I’ve been sober for over 3 years.

So that’s the story of how my life changed forever on November 28th, 2008. For better or worse remains to be seen. One thing the experience showed me, 90% of people who end up in Locked-in syndrome die. I not only survived, I made as full of a recovery as possible. I’m a survivor, no matter what life throws at me.

Locked-in syndrome

Central pontine myelinolisis



  • comment-avatar

    Personally, I think it s fine to give people a little of what they want as long as a newsroom is putting out informative and important stories, a few interesting and entertaining ones are good too, so long as they re not lies, unethically acquired or vicious.

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