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When I Changed My Employment Status on Facebook Due to Myasthenia Gravis

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So yesterday, I did a thing. A seemingly small thing to the outside world, however to me, it felt monumental. A tiny thing that could usher in a significant change.

In August, I left my position of over 16 years and a 20-year career as a hairstylist after being hospitalized and receiving a diagnosis of myasthenia gravis. Myasthenia gravis (MG or the “gravis” as my family calls it) is an autoimmune disease that affects your voluntary muscles. The more you use your muscles, the weaker they get. One of the first symptoms is drooping of the eyelids and double vision. It can also cause slurred or nasal speech, hoarseness, severe arm, and leg weakness. At it’s most severe, it can cause respiratory issues and even failure. There is no cure; however, there are treatments. Muscle strength improves with rest. Many days you feel normal in the morning, and near collapse at the end of the day.

I went from working busy 12-hour days to barely being able to hold my blow dryer. My hands and arms felt like they didn’t work, I looked sleepy, and if I still had a voice, my speech was so slurred I sounded drunk. I could not do my job. I regretfully gave my resignation. Since that time, I’ve been in a bit of a fog. There is inevitably a bit of a grieving process associated with a change like that. It does not come close to the heartbreak you feel when grieving over a lost life, and I in no way wish to trivialize or compare that grief to this. The reality of a significant change like this is a loss. And we humans tend to notice loss.

For over 20 years of my life, I knew what I “did.” I knew my purpose; I knew my role. I had a schedule, and I had boundaries, I even had a “uniform.” Black trendy clothes that could withstand the spots of hair color and coating of tiny cut hairs. I wore full face makeup and my hair was always styled. Most importantly, I wore good shoes. I am and will forever be a Birkenstock girl.

On your worst days at work, you dream about doing your own thing. Wearing ironic T-shirts and leggings, having time to sort your sock drawer, getting off that endless tiring work treadmill. In a word, freedom. What I didn’t ever consider is the minute you leave your job, all the things that were certain — I was good at my job, I loved the people, co-workers, and clients who surrounded me in my work environment, I could take care of myself and my child if God forbid anything ever happened to my husband — also leave. You get a big empty wedge in your identity pie. Jobless, I am now the droopy-eyed Birkenstock wearing girl in black bleach spotted clothes who still can’t manage to sort her damn sock drawer (but if I’m honest, matching socks are way overrated).

Now surely you know, I know, deep down, I am so much more than my job. I am, however, a tail end Gen-Xer. My generation watched moms who did it all and told us we could too. And thank goodness they did. Don Draper was handsome and all, and the clothes were fab, but who would want ”Mad Men” to be the norm? Working is what everyone did. It wasn’t resigned to just men. It’s equality, well kind of, but that’s a whole different thing for a whole different day.

My boomer Mom taught my X-er sister and me we could do anything we wanted. Just make sure whatever career path we took, we would be able to always provide for ourselves. I am thankful every single day for her wisdom. I wave the “I can take care of my own self” flag high because I was not only told but taught how to do it. The flip side of what she and my dad taught us was your family will always have your back, no matter what. I know this in every fiber of my being. Sometimes that strong independent girl (who I always picture as Peppermint Patty from “Peanuts”) is stomping her foot, waving that flag, and singing ”I Am Woman” too loud, and I find it a bit hard to hear that it’s OK if you need a little bit of help.

Friends, being the family you choose, will allow you a day off from being Mary Sunshine and give you the opportunity to be realistic about your current situation. Some days aren’t rainbows and unicorns. Somedays you cry a little at lunch at a Chinese restaurant the week before Christmas with two of your dearest friends. They assure you it’s OK, and help you remember you are resourceful.

Then you look at the family you made. The man you pledged your life and your heart to forever in front of God and the whole world, and the little boy who is the entire reason that your heart even exists. You realize you are indeed so much more than a job title or a disease. You have purpose and meaning and gifts. And you, just like everyone on this planet, are destined for great things. You have to edit the story and make them happen.

In our current social media obsessed world, the question instead of the old “If a tree falls in the woods…” has been replaced by “Did it actually happen if it doesn’t end up on Facebook (or Instagram or Twitter, etc.)?” It must be Facebook official right? Yesterday, after almost five months, I changed my Facebook employment status. No big deal to the rest of the world. To me, a huge step. I remember I panicked the first time someone asked “what I did” after leaving my job. I mean my palms got sweaty and everything. I didn’t want to tell this lovely lady my whole life story. I quickly mumbled something about being a hairstylist and left it at that. At that time, I was still in my rough draft phase for this particular chapter. Emphasis on ”rough.”

To avoid future sweaty palms, I have edited and decided on this: I am a Birkenstock-wearing Freelance Artist (capitalized) with a very messy sock drawer and a whole squad that will always have her back. No doubt future edits will be necessary, but for now, we will see just how this story plays out.

Originally published: January 6, 2019
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