The Lupus Safeword

Note: The following was originally written for The Lupus Magazine. As it is no longer online and I would still like people to be able to read the articles I wrote for that magazine, I am dumping them all here. Originally published October 2010.

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Safeword: A safeword is a codeword or series of codewords that are sometimes used in BDSM for a submissive (or “bottom”) to unambiguously communicate their physical or emotional state to a dominant (or “top”), typically when approaching, or crossing, a physical, emotional, or moral boundary.

Source: http://en.wikipedia.org/wiki/Safeword

Aside from using a safeword in the bedroom, I will use it in the middle of an impassioned discussion when I feel a time-out is needed because neither party seems to be getting anywhere. When a safeword is used, regardless of environment, it is an immediate notice to cease and desist. There are no ifs, ands, or buts. And there is no room for misinterpretation of the intent of the person speaking the safeword. Because the person on the receiving end respects your boundaries, they immediately listen in a Pavlovian conditioned manner. So what does this have to do with Lupus?

Well to answer that question, a little bit of background is needed. I have a nearly eidetic memory. When I come across information, my database of a brain stores it and makes it easily accessible when needed. This can be both a curse and a blessing. It made learning extremely easy, however it can make one appear to be a know-it-all.

And then Lupus started to take its hold on my brain. My brain is one of the organs my Lupus has the pleasure of attacking the most. What use to be a simple process to recall information started to become on that sputtered like a computer’s hard-drive does when it becomes old or is need of a serious defrag. The information was still there. I know it is still there, however the speed in which I could spit out that information, slowed down a little bit. And then 4 years ago at the age of 30, I had a left-sided CVA (left-sided stroke). It was after my stroke that I would also be diagnosed with Antiphospholipid Syndrome.

Following my stroke, a wall was built within the communication center of my brain. The brain fog associated with Lupus was amplified. To make it even more frustrating, my brain and hands began to experience serious problems in communication. This posses a huge problem when I have to communicate in text. My brain thinks one thing, but what gets typed out can be completely different. The text is still complete and coherent thoughts, however it is like something else took control of my hands for a few moments. When I am going through a period of fog, this issue rears its ugly face with greater frequency. If I am overly stimulated, stressed or overly-emotional (regardless if the emotions are “good” or “bad ones), this problem worsens.

This communication problem also translates to spoken word. I am sure many people who have the dreaded Lupus Fog also experience Noun Dysphasia: an impairment of language (especially speech production) that is usually due to brain damage. It is that tip-of-your-tongue syndrome but much worse. It isn’t that the word is on the tip of your tongue, the word is completely lost. When I experience this, what normally is a very colourful thought process (when I think, I see colours floating in my brain) turns blank. Suddenly, my thought patterns become white in colour. And the more one struggles to jostle the brain back into action, the worse the dysphasia becomes. At times, I have even forgotten my own name.

Then 3 years ago, something miraculous happened. Someone taught me about the safeword, which would forever make my life so much easier. I was on a trip back East (Canada) for a month, visiting friends and family. I traveled to many cities and visited many people. Before leaving, my doctor warned me this could be a real problem for me. The words “body bag” were even used (my doctor and I are very blunt with each other. It happens when one has been your primary care giver since you were 6. They become family). The longer my trip went on, the greater I became fatigued and the greater the brain fog and noun dysphasia became.

I was in Ottawa, Ontario, for a friend’s weekend-long birthday celebrations. In the wee hours of the morning after a night of only a couple hours of sleep, a bunch of us were laying around in the living-room having a chitchat. It was my turn to contribute to the conversation. Suddenly and without warning, the word I was looking for disappeared from existence. That is when the miracle happened.

One of the people partaking in the discussion was a former RCA (Resident Care Aide). He had asked me if I was having an issue. I explained to him that I have Lupus and that a year-ago, I suffered from a stroke. He then told me his mom had suffered from a stroke a few years ago. And then he told me about “toaster”. This simple little word, that for some strange reason is not forgotten despite that worst fog day, which you utter when you are experience the brain blip. By simple saying “toaster” in the middle of the sentence, you are letting the other person in the conversation know that you are having difficulty finding the word you want to use. It is now the other person’s job to find the word for you.

There is no need to explain what is currently going on inside of your brain (and we know that having to explain it is frustrating, causing the problem to worsen). The person just knows. Ever since that day, I use it any time my brain is not being cooperative. I’ve even extended it to say, “I’m having a toaster moment”, when it goes beyond a single word being lost and turns into a huge jumble of thick fogginess. Then the other person knows to be patient with me while I try to communicate my ideas and doesn’t push the situation. There are a lot of other situations (such as when text communication seriously fails) where I’ll use “I’m having a toaster moment” and I’m sure you will be able to find your own and make it work for you. Honestly, it does work.

Yes, you have to explain to new people why you’ve suddenly said “toaster” or have said “I’m having a toaster moment”. However, having to explain that is a lot easier and way less frustrating than trying to find a word or a thought that just does not exist at the moment. A word or thought that you know is in there somewhere but you don’t even have a faint hint of it within you. It allows time for the conversation to have a “time-out” and it can turn into a great teaching moment.

And maybe with enough people “toaster”ing conversations, in time we won’t need to explain “toaster” any longer. People will automatically know that it is The Lupus Safeword.

(The Lupus Safeword is transferable to Fibro Fog or any condition which causes Noun Dysphasia)