Myasthenia Gravis

Please, go away Mr. Elephant!

Recently I’ve learned to walk with an elephant along my side, who once in a while takes a break and sits on my chest.

My elephant friend came along with my Myasthenia.  MG has affected my lungs severely, it’s so bad that I’m treated as a COPD patient with highly restricted lung function.

Lungs are muscles and when I talk too much, or laugh out loud, or even sing at church they become weak.  Literally I can feel as if they don’t fill up with air and that’s when Mr. Elephant takes a break and sits on my chest.

via morgueFile

Those mere seconds when my chest is on fire and feel its going to explode is enough for remembering me about my mortality.

My husband lately becomes very scared when these episodes happen.  He’s left shaking a couple of days and worries terribly about the next time around.  Today when he called from work he asked like for the thousand time,

How are you “Mamita”?

Did you take your meds?

Don’t leave home without your medicines and the nebulizer.

Finally stating, I’m not ready to let you go, don’t leave me alone.  (As if I had any saying in it!)

I feel bad that everyone at home gets real upset about this.  It’s not my fault and I can’t do anything to prevent it from happening now or in the future.  I don’t even know when it’s going to happen again.

It’s like walking over broken glass.

But one thought remains in my head, the uncertainty of life.

Last night I suffered one of my worst episodes because when my husband put me on the nebulizer with all the meds I didn’t feel better.  It was as if my lungs were flat and didn’t want to react with my meds. I only have one word..SCAAAAAARY!

There is a saying in Puerto Rico that my mom particularly loves, “cree que tiene el toro agarrado por los cuernos”, which means you think that you have the bull grabbed by its horns.  In other words, you are controlling the bull and he’s going nowhere.

via morgueFile

That’s how some of us think we have life, “agarrado por los cuernos”.  That we can control it, do whatever we want with it, live eternally.  We are not liable or any other thing.

However when faced with our mortality we freak out, well at least I do.

Dealing with systemic Myasthenia has made me cherish life and everyone who takes part of it.  My only remorse is not having a close relationship with my brother, some point along the way we became strangers.  Even though we have feelings for one another, I really don’t know him too well.

Worst of all, I don’t know how to communicate with him anymore.  It was so easy when we were children but, now it’s like there is a huge gap between us that’s difficult or impossible to  breach.

He has two wonderful kids.

Just recently I’ve begun getting close to my nephew, he’s probably the best thing my brother has given me.  He’s a great kid and he gives me great joy.  He’s funny, smart and above all a kind person.  Most of all, I’m grateful I’ve had the opportunity to get to know him better.

My niece on the other hand, has a U-tube channel about make up, which I view just to hear her voice and get an idea of what’s she’s doing.

Just for those mere seconds when Mr. Elephant is just sitting there and I feel I can pass out any minute everyone in my life becomes a blur.

As the blur goes away and clarity is restored so is my faith.  With each breath I take I value my life and those who surround me.  Where would I be without them?

And even if my husband gets scared to death, he’ll just have to learn to cope with everyone’s mortality, specially mine.  Above all I feel loved and cared for in his arms.  What else could I ask for?

Life is so much better when we learn to cope with all it brings, never trying to control or push are circumstances because there are things that simply are out of our control and the only thing that’s left is our acceptance, willingness to let go and the blessing of freedom from the restrictions we put on ourselves.

So you see my dear friends, at the end, it’s all about what we’ve done and the relationships we’ve harvested along the way because that’s what life is all about.