“Beauty is not in the face; for beauty is a light in the heart.”
I turned fifty five this past February, the double nickel, I called it. Come next February, I will be on the backside of that double nickel, closer and closer to the big 6~0. Ouch!
The reason to share that bit of information, well, it is my disclaimer. Why? If you are one of the people who has said to me the thing I want to share with you today; please hear me and hear me loud. I do not mean to hurt your feelings, nor have you hurt mine.
It is, I believe, simply a lack of understanding.
I have been quick to judge the person on a scooter in the store, the one who appeared fairly capable when they hung the handicap placard on their mirror and briskly walked into the store. Complained when those many spaces were left unopened, while I had to walk so far in the pouring rain. The slower folk crowding up the isles as I rudely rushed through, not once offering to help. Yep, me.
I have been the one awkwardly groping for the right words for the sick, the cancer patient, the grieving.
In my ignorance, my arrogance, my prideful and rushing ways; I never expected to be on the other side.
Here I am. On the other side. Handicap placard in my purse. The coolest little scooter you have ever seen. I call her Zippy. She can move like the wind. Target trips, the Clinique counter, the book store; they would be out of my reach were it not for Zippy.
I get the looks. “Yeah, she looks fine, whatever”, as I blow by. I try not to take it personal, but I do. The not so nice side of me wants to bump the back of their heels and yell very loud, “Hey, I was a runner! How many marathons and half marathons have you run?”
It took a humility I never knew I possessed to set in a wheelchair. Drive a scooter. Be driven to the Department of Motor Vehicles with a letter from my physician stating why I needed that handicap placard.
In truth, my pride was pummeled to the ground at the beginning of this thing. Crushed.
I want for you to know how it feels to be me, along with %96 of those suffering with chronic illness. Yes, %96. Approximately ninety~six percent of people who live with a chronic illness have an illness that is invisible.
My illness, Postural Orthostatic Tachycardia Syndrome(P.O.T.S.), is invisible.
When I am engaged in conversation, what you may not see are these little things…
~The drooping of my right eye
~As I stand, I have a white knuckled grip on something solid, so as not to let you see me sway around. I do often tell folks, “I am the most sober drunk you will ever see.”
~The focus it takes to follow your conversation
~My struggle to remember your name, though I now you well
~How in mid~conversation, I completely loose my train of thought, the thing I was about to say, lost.
~The leaning, the clinging, the loss of balance
~My head, as I pray, not bowed, as looking down sends my world spinning round and round
~Chunks of the calendar have gone away, I am forever confusing the day, the month, and yes the year
I could share with you so many things. It would take all day.
And truly when you say to me, “You look so good”, I am thrilled. Let’s face it, as an official senior citizen I don’t get much of that.
When you say, “I am so glad you are all better now.” Here is the thing, Chronic Illness is chronic. I, like many others will live with it the rest of my life.
There is no cure. Most of us, I believe, have learned good management skills (more later on this, so please stay tuned).
On average, my quality of life today falls somewhere between %60 to %70. That is NOT normal.
Normal, what I used to be, will never be again. I never feel great or even good. I have, by the Grace of God, learned good coping skills.
Before you blast my inbox about my lack of faith, I know, I believe, that The All Powerful God of the universe could heal me this instant, if it were His will.
This is where I am, today at this moment. This is where I stand, in the present. In this, my new normal, these are the boundaries I live within.
You made all the delicate, inner parts of my body and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous~how well I know it.
Psalms 139:13~14 NLT
I pray, I have not hurt your feelings, simply opened your eyes.
The lesson in this: We, myself very much included, need to look beyond what we see on the outside.
I am not defined by this. I am defined by the Light that shines within.
Gifts of Grace