I am alone!
No one understands what it's like for me.
There's that deep pain inside, I just want to cry!
The feeling is there and I just want to share,
But who would truly care?
Never a day goes fully by that this is not there,
I never say goodbye.
The pain is real, I just want to kneel,
and yell why, oh why! Can this not heal?
Some days I feel like I could die,
But in this myasthenia gravis fight, all I can do is sigh,
Taking the best breath, I can.
Trying, oh, so trying to move ahead!
There are not enough words to explain how I feel,
Don't stand there and tell me this is not real!
I know who I am and just what I feel.
This isn't for sissies, we have a will of steel.
Heated and pounded and twisted that steel,
Through time and distress and pains, and exclusion from world at rest.
The world doesn't stop just for me,
I'm not that important that anyone could see.
Warriors of MG, for me this is real,
Hope, I'm not alone in this invisible feel.
But who would understand?
Warriors like me we come in all styles,
All countries, all peoples, we've been around a long while!
The one thing that binds us is the enemy we fight,
Unseen by the world, not in its true light.
We did not ask for this fight,
But each of us warriors know where we stand!
Not one giving up, just moving ahead.
Sight unseen, we do understand other warriors,
that fight in this sinking sand.
We fight together, yet alone.
Strengthening each other in ways unknown.
We are all different
We are all snowflakes, in different storms.
In this disease there are no norms!
All the symptoms and testing they have in the books,
For some of us they're just there for looks.
The waxing and waning of this disease,
Can literally bring us down to our knees.
In the blink of your eye and the twist of your head,
each little snowflake could almost be dead.
Always on guard for the next storm to come in,
Hoping and praying we’re in a safe place,
Where someone at least knows what MG is!
The best we can hope for
The best we can hope for now would be remission.
Some get to that point, and we cheer for each other!
Yeah, wondering why it was for the other,
Sometimes warriors who received the remission,
unfortunately always wonder if it will end.
Each knowing the battle can be recalled, it's like sifting sand.
The long hope for all warriors is to find a cure.
So that no one ever again would have to endure,
The lonely battles without a cure!
Warriors do have other support
Our supports are spouses, family, and friends,
Our doctors, and neurologist of whom hopefully we can depend
As well as the other providers, that some might have,
Safely we should be in their hands.
Also, online groups and in person as well,
All to back us up, that's all so swell!
How frequently do you experience double vision (diplopia)?