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Wearing the mask for everyone


scottm

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Sometimes I get tired of people telling me that I look good. I just want to tell them it is all a carefully choreographed illusion. I need to be strong for my wife, if she ever really understood the fog I live in it would terrify her and I won't do that to her, She went through quite enough already. She does know when I'm getting brittle and how to help me compensate and I thank god I have her everyday.

 

For my friends they all think I'm so much better because I go out with them on occasion and can walk almost normally and its been almost a year, and of course no visible scars. If they saw my chest they'd call me Frankenscott. :) They don't notice that I don't eat, it could be embarrassing to them to have me trying to use silverware and sometimes needing two hands. Not to mention when it just doesn't work out with the whole now it goes into the mouth thing. I don't want them to see how confused or tired I am at times, or the vertigo you train yourself to function through, maintaining vertical integrity can be very difficult when you can't feel your right leg. Would they even understand how much the brain needs feedback to walk, something I certainly never thought about.

 

So I wear the mask of I'm fine and recovering but sometimes I just want to let the mask fall away. Yesterday is gone and with it large parts of my V1.0 life. So I wear the mask and try not to let anyone down, but it is hard some days.

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I understand wearing the mask as Ray did that after the first stroke.  After the second and third we both wore masks, he the "sure I'm recovering" mask and me the "I'm coping just fine" one.  Over the years (I looked after him for twelve and he had a year in a nursing home) he became weakened as each stroke, fall, seizure etc took their toll and we just had that patient, long suffering look on our faces and that had to do.

 

Life is complicated, relationships are too, but show your true face to at least some of your friends, those few who you know will cope, and never hide from your partner if she is like me and expects there to be honesty in a relationship.

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Hi Scottm, better to let the mask slip sometimes, than to let the pressure of wearing it push you over the edge.  If you're hiding things, they'll eventually get away from you and then it'll hurt people more than you being honest up front. You don't need the emotional pressure of keeping things to yourself.  Find someone you can share this with before you explode or collapse from trying too hard.  Many people do not expect you to be perfect, and you should not expect that of yourself either.  Sure do what you can do and don't let this thing stop you enjoying what you can enjoy.  cake all over your chin could be a good ice breaker for explaining to someone about "invisible" injuries, and how hard some of the "simple" things are now.  Not everyone gets it but don't try living up to unrealistic standards, especially ones you are putting on yourself.

 

You don't need sympathy, or fussing over but you do need people to acknowledge that sometimes this thing sucks.

-Heather

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My. Mask has been to be positive around others because i feel like no one wants to see my despair, my pain, my fear. I have to be strong for others but its not what i feel on the inside where every ounce of energy is given to looking normal. The more time that passes the easier it is to be me which isn't always pleasant. I cuss a lot now so it seeps out one way or another. Others don't see those invisible injuries and they are tough to explain to normal people but you have to press forward to get where you are going. Always do what is best for you. Deep inside you know what that is.

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