Invisible.
Shrouded. Hidden. Veiled. Unseeable.
Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. I used to wear an eye patch because of double vision, but prisms in my glasses fixed that.
When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why?
Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. I used to wear an eye patch because of double vision, but prisms in my glasses fixed that.
When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why?
I.
Don't. Know.
Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?
So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly."
Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."
Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."
And, "Please don't make "Arrrr, matey" sounds when I have a patch over one eye. If I’m wearing a patch I have double vision, probably a severe headache from the double vision, and I'm exhausted. Unless I take the lead, I'm probably not in the mood for jokes."
I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."
And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"
We are out there. We are someone you know.
We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.
Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?
So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly."
Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."
Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."
And, "Please don't make "Arrrr, matey" sounds when I have a patch over one eye. If I’m wearing a patch I have double vision, probably a severe headache from the double vision, and I'm exhausted. Unless I take the lead, I'm probably not in the mood for jokes."
I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."
And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"
We are out there. We are someone you know.
We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.
And we don't want to be invisible anymore.
Please
take the time to be kind to someone today.
You never know the difference you may make in an otherwise very
difficult life.
22 But
the fruit of the Spirit is love, joy, peace, patience, kindness, goodness,
faithfulness,
23 gentleness, self-control; against such
things there is no law.” Galatians 5:22
ESV
“Judge
not, that you be not judged. 2 For
with the judgment you pronounce you will be judged, and with the measure you
use it will be measured to you. 3 Why do
you see the speck that is in your brother's eye, but do not notice the log that
is in your own eye? 4 Or how can you say
to your brother, ‘Let me take the speck out of your eye,’ when there is the log
in your own eye?” Matthew 7:1-4 ESV
2 comments:
Your thoughts are so true. I can really relate to how you feel. Thanks for sharing the great scripture verses, too.
Thank you for reading!
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