The Text of Shame

The Text of Shame

August 3, 2017 | Posted in: CVID, Rare Disease, Relationships

It’s your best friend’s birthday. You bought tickets to the show she’s been wanting to see for the last year and promised you would go no matter how sick you got in the hours leading up to your departure. Leaning into those words, your dear friend has skipped both the 24-hour and 4-hour check-in texts.

She’s oblivious to the raging infection your body is currently nurturing as well as your guilty, conflicted and panic-ridden state. ER or show, you ask yourself repeatedly, lying across your bed in a towel. You realize either would actually require clothing but you just aren’t sure your body can muster the energy needed to walk the three feet to the closet.

So how will you go to the show? You won’t. It’s the answer you’ve been trying not to know for longer than you care to admit. And so it is now time to construct the text of shame, you will not be going to the show, but to the ER. You are sorry for disappointing her, again. Your body is a jerk, clearly.

Maybe like me, you’ve felt your body was a punk sometimes, or you dearly love someone with whom you’ve come to know that the 24-hour check in text is a must. For many years, I didn’t have a name for the thief who stole so many meaningful moments from me. But one sunny day in Michigan the thief of CVID (Common Variable Immunodeficiency Disorder) was finally unmasked. Like many of you, I had all the normal feelings of relief and shame, fear and isolation. I began my circus training—like we all do—learning to balance killing the germs versus nurturing relationships, resting versus living life to the fullest, knowing my limits versus doing the things that matter anyway.

At 38, my life looks nothing like I thought it would. Click To Tweet My body clearly wears the pants in this relationship. Daily I find myself asking, “How do I make the most of the moments, of the relationships I have?” The answer to this question will look differently for all of us.

For me, I’ve found the answer is deeply rooted in gratitude. What was I able to do today? Let’s celebrate that. Let’s ruminate on that. Did I watch The Office with my son and cry all over again about Jim and Pam? Did we dissect our favorite scenes and characters together? Friends, whether I made it out of my pajamas or not, this is the stuff really living is all about. 

Oh course, there are the moments, my heart begins to wander off to the land of “what if’s.” What if I was more like this or that mom? What if I’d just pushed harder or been able to attend this or that event? In those moments, I corral my heart and whisper, “Be here, now.” Here and now is what I have. I want to treasure it. Click To Tweet

Be here, now friends, wherever “here” is.


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