Sunday, January 13, 2008

My most treasured gift, My eyes can speak!

I started this a few weeks ago but did one of my famous falling-asleep-while-in-the-middle-of-doing-something-routines, and then while asleep my post published itself! I woke to the "You've successfully published...." message. Totally empty. The way I think about things, trying to put it into perspective, I just figured that was not the right time for me to write that. Why? Couldn't tell ya. Still don't know. Could throw out some guesses, but what good would that do. Best to just accept that there must be a better time. Hopefully, this is that time. Gonna give it my best shot any way.

I just keep learning more and more about MG, and how it had already been affecting me before they put a name to it. One thing I did not know about was how it was affecting my face. Since I am the one going around with the camera stuck in everyone's face, I rarely have my own picture made. In 2005, though, my graduating class was having its 45th reunion, and I began to see pictures made of myself. "But I was smiling!" I would say, and make another attempt,
trying harder and harder to get a break in the ole stone face that stared back at me in the digital camera. If anyone else was putting that much into a grin, they surely would look crazy, and inside of me, I thought I would, too. It felt like my mouth and eyes were stretched all over my face, ear to ear, eyes closed, squinting from smiling so hard. Nope. Okay, I just knew that it was okay for me to over-smile at the reunion. It sure felt crazy; unnatural.

This was before diagnosis, so I had no idea why my facial muscles did not respond, but just like all the other things that have popped up throughout the years, I just figured out how to live with it, and went on my way, not knowing what I actually looked like. Ole stone face. That was it! No expression on a face that has exuded joy and happiness for..... well, as long as I know, I guess. A lover of life, and people, and you could not tell it. Blah. Were it "The Christmas Carol" you might have looked at me and said, "Bah, humbug!" My family didn't know why I looked like a grouch all the time. How could they? None of us knew. This picture is more recent, a year after diagnosis, just after my first IVIg, and a year on Mestinon, but still with the inability to smile when I was trying so hard to do so. Not only was my mouth for my smile affected, but my eyes were affected as well. Jim calls this my serious look, and unfortunately it's the way I looked all the time.

The ptosis (droopy eyelids - covers the pupil, obstructing the view) - was really bad, and when I went into the hospital, I could see very little. Subsequent IVIg treatments have helped but the problem still exists today. This picture was made after several treatments. I have monovision, with near, reading vision in my left eye, so I *can* hold my left eye open and read fairly well. Currently, though, my vision *has* improved, and the lids are not as low as they were, and I can read my laptop monitor, the newspaper, and books (if I can tear myself away from here ;), even though my eye lashes are somewhat drooped into my line of vision. As is typical with Myasthenia in general, the more fatigued you are, the more the symptoms arise, and this is certainly true of the eyes...... at least for me and *MY* Myasthenia. In the photo, if I were to let go of the eye, it would drop down to the level with the other eye. We were at O'Charley's, and I was doing that to read the menu. Then we were acting silly, and I don't think I ought to put those photos up here. What is growing old, becoming a Senior Citizen, living in the Golden Years for if you cannot have some fun along the way? Right? Right. *s*

Droopy eyelids is not the only involvement. Eye movement itself is involved, and I have had trouble moving my eyes back and forth, up and down, and any other movements you might think of. The year, 2007, was a rough year for me, and it seemed to be ending the same way. Christmas was turning out to be deafening quiet. Christmas Eve, Jim came to my bed with a Radio Shack bag in his hand, saying, "I know you like to wait for Christmas Day, but I thought you might like to open your Christmas present now." I had been feeling really, really depressed, in addition to the physical problems brought on by the IVIg still hanging on. He handed me a jewelry box, a small, black velvet square one. I gingerly opened it, and inside was the most beautiful diamond ring! My eyes lit up widely, and I exclaimed a big, "WOW!" It was then I realized my feelings on the inside were being portrayed by my eyes on the outside! Oh, how long had it been? How long since I had been able to move my face around so that it would express what my mouth, and most importantly, my heart was saying? I do not know because I do not know how long my facial muscles had been being affected by Myasthenia Gravis! I'm so HAPPY. I make the craziest faces now for no reason at all. See, is this not reason to keep trying with the IVIg treatments? Is this not reason to put myself out here and let everyone know about Myasthenia Gravis so more can know, and more research can be done for the future? This is reason for me to keep going. For me to keep trying. It is why I refer to these treatments as the Road to Remission. Small increments have already been made. Well, babies learn to walk one step at a time, and I am reaching remission one step at a time. And now my eyes can say to you how I feel on the inside. Maybe not as great and grand as they once did, but surely better than the ole stone face, frozen face I was before we began! My eyes now speak. They no longer must sit idly by, looking all serious, mad, grouchy and so forth.

I can look here.
I can look there.
I can look over yonder.
I can look down.
I can look up.
I can look happy.
I can look glad.
I can look joyful
I can look cheerful
Oh, how I love to look everywhere!

Striving for a world without Myasthenia Gravis


Cindy Breninger said...

Oooooh, I love the ring! It is really pretty. Sorry for all you are going through. :)
Your friend,

ragdoll said...

Thanks Cindy. It's all from you coming to ASD. I'd been thinking about a blog from reading Alan's, and after reading yours, I knew I was ready to jump into the fire. LOL Guess that is what the treatments are like - going through the fire to get down the Road to Remission. If I can already see some better, then it has been worth it.

Hope your tummy bug is better.

Ragdoll Billie

Joanna B., Minnesota resident, Texas native said...

hey billie, just found your blog, it's great and i admire your courage and your great strength in your struggles!!! i just started a blog, too, on this site, mine is called LifeStuffandSteveEarle, maybe you would like to see it sometimes...

in the meanwhile, take care, my friend, and you are in my prayers!


Anonymous said...

Hello, from a fellow MGer. I came upon your site, quite by accident, and I'm glad I did--it's beautiful. I haven't had a chance to read it all, but I will bookmark it! Keep your mestinon low and your spirits high!

Deb in Canada