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How Lupus Has Diminished My Voice


During the second game of the World Series, I was at a local bar and grille watching my second favorite baseball team, the Dodgers (Minnesota Twins are #1), lose to the Red Sox for the second night in a row, and this complete stranger crouches down next to me, puts his heavy arm across my shoulders, presses his head against mine, and proceeds to tell me his own personal history in baseball while I wearily watch to see if the beer he is barely able to hold from having ingested so many of them is about to land on my leg. I was certain he was not hitting on me because he seemed to be cozying up to every other Tom, Dick and Harriet in the joint, but this was still highly uncomfortable.

The pre-lupus me would have easily put him in his place. With a few choice words in the perfect “change your behavior or die” tone of voice, I would have had him crawling away in terror. The now lupus me could do nothing but remain a pained statue enduring the awkwardness in near silence until he moved on to someone else. I did speak a little in response to his questions, but my voice was a forced whisper due to unknown conditions that again left me hoarse. That’s been happening a lot lately. Finally, he bid me goodbye with a minute high five consisting of one finger from each of us through the fence surrounding the outdoor patio as his wife dragged him away. At least I got to end the strife of a lost World Series game with a chuckle.

It got me thinking: lupus stole my voice. Yes, I was hoarse, but that is not what I mean. I mean that complete stranger did things he should not have been able to do. I was helpless to stop him. Mentally, by the time my fogged brain registered his arm around me and his head pressed against mine, I was stuck in the hold. Physically, my body froze up, unable to respond appropriately by throwing his arm off even though he was setting off my nerves along the top of my shoulders and my neck. Vocally, the voice that used to make grown men wet themselves whenever I chose failed me entirely. I sound like a crushed mouse now.

Something has happened to me. I have become a doormat, a target for bullies, a mark for narcissists to take advantage. It doesn’t matter the guy meant no harm. It matters that I was helpless to set the boundaries.

This isn’t the first time this has happened to me since lupus invaded. A few years ago when I was deep in my lupus battle and very sick, my mother gave my phone number to a complete stranger because this woman told her she knew how I could cure myself. I started getting phone calls from this woman I did not know from Eve. I didn’t know what to say. I kept hanging up on her. She kept calling. She was not getting the hint. Back then I did not know how to block numbers. My son finally grabbed my phone and blocked it for me.

That situation left me feeling angry, humiliated, invaded, anxious and more. What really got under my skin was not the gall of the woman, nor the erasing of boundaries done by my mother – no. It was my inability to stand up for myself.

I have a history of making grown men cry and grown women flee when my children were young and in need of my protection. I have been able to walk into a room of adults of all ages and professions and easily take control. I have won arguments with quick wit and a sharp tongue while maintaining an air of respect. I was good.

Now, no one hears me, not even my support system. My voice, my backbone, my confidence, have faded into the background so deeply that my requests for help go unanswered. I have requested to be taken to the doctor and ignored by my husband. Family members infantilize me. I have to keep reminding them that even though I am now slow to find the words to express myself it can be done. I still have capabilities if everyone would please be patient as I work them out.

I now shake at the prospect of checking my emails. Answering my phone makes me sweat. My ignored front door leaves me in a sea of anxiety when the doorbell rings.

This is not me. This is not who I am. I am strong. I am capable. I am a person of worth. I matter! My thoughts, my feelings, my joys, my pains – these things all matter! These things have substance! I have something to contribute!

Hello? Can anyone hear me?

Getty Image by phaustov