For the Moment vs. Securing a Future

Living now with a chronic illness that’s attempting to kill me three ways has totally changed the way in which I think about my daily life, and how it relates to time.  Most of the advice one hears about living life and time is about acting as though you have no more time left. “Live life to the fullest.” “Carpe Diem.” or “Live Like There’s No Tomorrow.”

Fortunately, for me, my life reads better than most people’s bucket lists. I’ve trekked in the Himalayas, met the Dalai Lama at his house, taken a Camel Safari, earned a motorcycle license in Bali, owned a nightclub in Peru, taught English in a jungle, and visited 48 out of the 50 states.

I still found time to marry the love of my life, graduate from college magna cum laude, create meaningful work that I loved, give birth to three amazing children, and enjoy the fruits of stay-at-home motherhood.

Ok, I suppose one might argue that I am technically “sick,” but I think my lack of contagiousness is the spirit of the mask.

Now, at the age of 38, and at the time the my kids are aged five, three, and one, I find myself diagnosed with a very rare (about 400 people world-wide rare) autoimmune disease called AntiSynthetase Syndrome. (Otherwise known as ASS. Yes, that’s right. It’s called ASS!)

This ASS has further given me Interstitial Lung Disease with Pulmonary Fibrosis and Pulmonary Hypertension. So, at this point, I have to worry about both my lungs and my heart. If those don’t get me, then I have to worry about the fact that the meds I now will take for the rest of my life will deplete my immune system so dramatically that any infection poses a huge life risk.

Setting the Bar High

Suddenly my life is no longer about living it to the fullest or acting as though it is my last day. My husband has told me he still expects another 30 years out of me, and I’d like to do all in my power to make that happen for him.

Having a chronic disease does not exempt me from the proverbial bus that is turning the next corner to run me down.  I don’t have much control over that situation (except remembering to look both ways before crossing the street. SAFETY FIRST!)

My daily (weekly, monthly) life revolves around doing and planning the things today that will help keep me alive as long as possible. Let’s face it, folks, unless you’re a complete miserable asshole, your kids don’t care about your happiness. What they care most about is your presence, and they want that as long as they can possibly get it.

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