my forays through love and other gastronomical stories

Moebius Syndrome and Me: I Can See Clearly Now — May 20, 2018

Moebius Syndrome and Me: I Can See Clearly Now

The Lesbian Chronicles —
Moebius Syndrome and Me: Baby Steps — May 18, 2018
Moebius Syndrome and Me: Use Your Good China — May 17, 2018
Beauty is in the eye of the beholder —
Moebius Syndrome and Me: Think Twice — May 16, 2018
Moebius Syndrome and Me: Try A Little Tenderness — May 15, 2018
Moebius Syndrome and Me: Perfectly Flawed — May 14, 2018

Moebius Syndrome and Me: Perfectly Flawed

I have been online dating for the last few years since it’s ridiculously hard to meet a sixty- something lesbian when I’m an introvert and an empath and in bed most nights by nine o’clock.

I have always shared current photos of myself because I believe in transparency, and have had my fair amount of positive responses. But I haven’t been completely transparent. I have a rare disease called Moebius Syndrome. Moebius Syndrome is a partial or complete paralysis of the cranial nerves. In my case I have partial paralysis, so I can smile, just not a ‘toothy’ smile, and I can close and open my eyes, I just don’t have peripheral vision. In photos because my Moebius issues are somewhat mild, I look ‘normal’ or as close to normal as one can get with Moebius Syndrome.

Now here’s the interesting, painful but ultimately liberating situation that has been percolating lately inside my heart/mind.  I’ve been making these videos called Moebius Syndrome and Me, talking about my life as a sixty- something lesbian living with a rare disease called Moebius Syndrome. I started out making these vlogs to help bring awareness about Moebius Syndrome and to help me feel better about myself. If I could begin to love my crooked little smile, perhaps some lovely lass could as well.

The last three women I’ve been corresponding with were very interested until I shared my videos with them. Then literally from the moment I shared the video, they disappeared.

At first I was devastated and second – guessed my need to share, but now I feel I’m doing the right thing. This is me, and if someone doesn’t like my perfectly flawed face then I’m better off without them.

I’m sixty one. Basta. I’m done feeling embarrassed and shamed for something I had no control over and that’s NOT MY FAULT.

So, as Bebe Rexha sings “If it’s meant to be, it’ll be/baby, just let it be”. I need to have faith that my beloved will find my flawed features appealing and find me.

If anyone else has had a similar experience, I would love to hear from you.

Moebius Syndrome and Me: The Day After —
Moebius Syndrome and Me: Find Someone That Makes You Feel Safe. — May 12, 2018
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