Purple Ribbons

#MyInvisibleFight, My Frustration

“You’ve done it before and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination.” – Ralph Marston

I asked him, “What do you see as my invisible fight?”

I needed help. I am not sure why this blog has been so difficult. So much so that finally, I had to ask someone. Seeking any help outside of my Chronically Awesome community was not easy. Part of my Invisible Fight has always been the requirement placed upon me that I keep my invisible illness just that, invisible. So, imagine my surprise when I got this reply:

“I see your frustration. You can no longer do those things you used to do. The things that you felt defined you. You are frustrated at the limits that this ‘gift’ has put on you.”

“This gift.” As far as I know, I am the only one that has called my illness a gift. He was silent; that is his way. He was silent as he looked at the tears welling up. I said, “thank you.” He smiled that way that he always does and continued about his business.

He has known me for over twenty years. This man knows what used to make me tick, what it was that made me feel vital and energized before that day that changed everything. He knows what made me Julianna. Now he sees what makes me WhatTheJules. The two iterations of me.

speakingWhen my body betrayed me, after that accident, I became frustrated at what I lost. My career was my identity. I was working sixty-hour work weeks only to get on a plane on Friday to train packed rooms somewhere on the other side of the country. On Monday, I would be back in the office to start again. Hell, I was on a break at one of those conferences, a rare moment to lounge at the pool when my accident happened. I will write another blog about that. (Nice hook eh?)

I accomplished this while doing the best thing I ever did in my life. I raised my daughter.

Now? The idea of an office job scares me. I cannot sit upright in a “regular” chair for longer than an hour. No more office. No fancy title (“Vice President”!). No salary.

Frustration. I cannot open a jar of capers, yes capers. Opening jars now regularly dislocates my fingers. The first time he saw that I saw him gag. I used to come home from nine hours at the office and decide, on a whim, to cook amazing meals, like chicken piccata. I would do that from recipes stored in my head. A head that now cannot even remember a simple word or the day of the week. Cooking, that was my only hobby, another major part of my identity. It was how I showed my family love. I fed them from my heart.

It is so frustrating to be unable to stand in my gourmet kitchen long enough to bake and frost a cake. It is maddening to know that even when I am reading a recipe I will forget an ingredient.

Jules at MRITo me, it has been in the long run, a gift. I have found a way to swap illness for awesome. To create Chronically Awesome was like birthing another child. It was a fight, my invisible fight. I have found exciting and genuinely fulfilling ways to make my life whole again. But, it is a fight that no one seems to understand, I lost so much, and I found a gift in a way that no one would choose. My invisible fight has been the frustration of choice. I had no choice in this. This life thrust upon me in a snap of the universe’s fingers has become one frustrating step after another. Illness has become my job. My “me suit” was turned inside out.

Instead of airport gates I wait in doctors waiting rooms. I read EOB’s instead of BEO’s. I have nearly as many prescription inserts as I do cookbooks.

However, someone finally sees it, and he calls it a “gift.” Someone sees that my life was turned upside down, and inside out. Someone sees the enormous effort I throw into to making my life better. As awesome as I have made this new road, and it does get more and more awesome every day, it still ain’t the old road. My my hard work, my effort no matter how frustrating it may be, is finally noticed.

alone julesHow is this a gift? What I am I getting in exchange for this frustration? As I reach the end of these thoughts, it has become clear to me. I was given this gift, one I unwrap with the labor of my frustration in order to soften me. The hard edges of that person; the “career me” have been buffed down.

In the office, people called me, “THE Julianna.” I was the boogyman, “you don’t want me to put The Julianna on the phone do you?” Or, “There is a jerk on the phone, give him to The Julianna!” At which point everyone would stand around my desk while I ripped “the jerk” a new one. Some people in the office were afraid of me.

I don’t want to be The Julianna. I am much happier as WhatTheJules.

I have always been a teacher and a leader, but I am much happier lifting up a community than marketing to a demographic.

Unwrapping this gift may be frustrating, but with each tear of the purple paper I am finding something inside that I like. Sick me is a much kinder me. Achy me is a softer me. If it took frustration to get here, so be it.

I think it is funny that my frustration over this blog topic forced me to do something I never do: I asked for help. I guess sick me is also a far more humble me.

Invisible Fight Badge