Invisible

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?

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.

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

Here's MY Sign

 

Photo courtesy of Invisible Disabilities Association

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. Sometimes I wear an eye patch because of the double vision, but there again...could be an injury.

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 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."

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

What Do You Think?

Imagine this:

You see an overweight person who looks fairly normal park in handicapped and walk normally into a store. What do you think? Lazy.

You see a person parked in handicapped putting her own grocery items in the car. What do you think? I ought to call the police! A real handicapped person needs that space!

You see a person with droopy eyelids walking down the street with a slight drag of the foot. What do you think? That chic is high on something!

You see a person walking around with one eye closed and stumbling around. What do you think?
Drunk.

You see a person, dressed normally, in a restaurant at noon. Her speech is slurred quite badly. She has a child with her. What do you think? Oh my gosh! I can't believe that woman has been DRINKING! At noon, no less! And with a child!

You talk to a person at a social event who appears perfectly normal, except for a trach that you assume is from a car accident or previous cancer. You ask her what she does for a living, and she tells you she is on disability. What do you think? It's people like her that abuse the system and make it harder on all of us! I can't believe MY taxes are paying for her sloth!

Well, you would be wrong. Dead wrong. On all counts.

What if I told you that person has Myasthenia Gravis, a horrible, chronic, life long neuromuscular disease that robs a person of her independence. That person has spent countless hours in hospitals, doctors offices, clinics, with needles in her arms, not being able to talk because she has to hold still, and can't use ether hand to cover her trach. That person has been unconscious, on a ventilator, fighting for her life, at the age of 29.

What if I told you that person parks in handicapped because she normally walks out of the store so exhausted she might fall if she had to walk further?

What if I told you that person may have been able to go to the store that day, alone, and carried her paltry 3 small bags to the car (parked in handicapped), but that's the only thing she's been able or WILL be able to do that day?

What if I told you......that person is me.