Oh sure…I’m Feeling Soup-er. . .


I have been really trying to not put on my “mask” anymore. . .the one where I hide my symptoms from friends and strangers.  Yesterday at lunch, my mask resurfaced. . .I spent my whole childhood hiding, trying not to stick out…trying to blend in…trying to look normal when my body clearly failed me.
I never thought of it as a “mask” until a conversation with a dear friend earlier this year.  She has a mask she’s been working on shedding, too.  Our “problems” are different. But our masks served the same purpose. Don’t let anyone know you are suffering.  Don’t let anybody know you are struggling.A mask is a stifling and exhausting thing to wear and it does nobody any good!

 

I’ve been feeling so good starting this blog and sharing things I never shared with others before. Sharing my struggles from childhood that very few knew…and even those who knew probably didn’t know how deep it really went…  I don’t have any reason to hide symptoms anymore.  I’m not a first grader getting teased when I try to run anymore.  I’m not trying to avoid kids making fun of me and picking me last for their teams during gym class anymore. . . My  roller coaster is a lot more tame now. (See my post in May about my “roller coaster”) I’m a happy adult with so many blessings!

But every now and then, I struggle with something and it resurfaces. My insecurities take over and the mask is smothering me again.

Like yesterday…

Let me back up for a second though… I have been working really hard lately.  My job did not change, but expectations did and I was forced to work in the office 5 days a week after working at home two to three days per week for the past ten years!  That is a MAJOR change for me.  I braced myself anticipating that it would affect me physically, and it did.

It took a major toll on me.  By the time I got home each night,  I was exhausted. My eye lids felt heavy and blinking was a chore. My right eye drooped more than usual, and my muscles ached.  Typing at my desk was taking a toll on my  hands and wrists. I am not sure why, since I always type all day. Except that my  days were longer now, I was adding over an hour of driving to my day, getting less sleep, and stress was stealing a MAJOR chunk out of my strength. 

I starting noticing my hands trembling when I tried to do things that required fine movements or steadiness.  You should see me try to pluck my eyebrows or put on eye makeup! Ugh.  I developed tremors from muscle fatigue and my stupid disease fighting me every step of the way. For the most part, it was simply a side effect of everything and a small annoyance. I’m not a brain surgeon!  Steady hands is not required for anything I do!

Fast forward to yesterday. . .I went to lunch with a friend I had not seen in person for longer than a five or ten minute conversations in passing at school drop off over the past two months.  We talked by text, but you can’t see hand tremors or droopy eyes on text.  We set a lunch date because it’d been forever since we actually sat down and talked in person.

Chinese food!  Yum!  I haven’t had that in forever.  Perfect😊

We ordered the lunch special which comes with soup.  I ordered wonton, one of my favorites!  It was a small serving and looked delicious.  I dove in for the first bite and was immediately grounded when I realized my hand couldn’t control the movement needed to bring the spoon to my mouth without shaking and dumping the soup back into the bowl or all over me and the table.

Oh crap.

I couldn’t NOT eat it. But my hand was shaking so badly while I tried to eat the darn soup. It caught me off guard!  My mind started racing as I fought the uncontrolled movements.  I was failing. Back in the bowl the spoon went, over and over again. . .without a bite.  I’d stir it slowly, break off a piece of noodle, distract from the fact that I was contemplating how ringer the darn spoon to my face without spilling or looking like I have DTs or Parkinson’s!

I tried hard to concentrate on each small movement and make tiny adjustments to stop the tremor, while still trying to hold a conversation.  I tried again and again… holding my spoon at different angles, thinking that using different muscles might handle it better and calm the tremor. I finally contorted my wrist/hand in such a way the tremors were lessened just enough that I could finally take small bites without spilling ALL of it before it made it to my mouth.

I didn’t look up as I scooped my bites.  I didn’t want to know if she noticed.  I was embarrassed.

WHY???

I DON’T KNOW!!!

It is so SILLY!  I realize my stupid silly mask was on again, and it is like I am compelled to hide symptoms at all costs.  For NO apparent reason. . .  Once the mask is on, it takes over and I can’t use logic to talk myself out of it.

She is not a friend who would care if my hand was shaking!  On any other day, I should have been laughing it off! I’m really good at finding humor in my tough situations and not hiding. But that is how the mask works.  It makes me feel like I need to hide symptoms at all costs, regardless of how silly I look trying to accomplish something my muscles are failing at that moment…regardless of who is next to me and how supportive they are and non-judgmental they might be.

I didn’t need to “hide.”  She is the friend who sat in the ER with me all night and into the early morning hours when I had complications after my thymectomy last year. She is the friend who accompanied me on a Now I Lay Me Down to Sleep photo  session in the middle of the night where I was going to take photos in the hospital for a grieving family who suffered the heartache of a loss of a precious newborn child.  She assisted me in taking photos for HopeKids Arizona families with terminally ill children for their special annual family portrait event.  She’s a selfless caring soul. I KNOW she wouldn’t care about my stupid hand tremor. But for some reason, I was really embarrassed by it 😦
I have come so far working on removing my “mask” over the last couple years. However, every now and then it resurfaces and catches me off guard. It’s like the little kid in me resurfaces and suddenly I don’t want to be different.  I don’t want to call attention to my weakness.  The fearful  child in me resurfaces and I feel helpless.  Like I will never be able to do simple things like eat soup, without looking like a fool.
I don’t want to have problems.
I want to put on a smile an pretend I am normal…

Normal?Whatever that is. . .🙄

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