27 Years Later: A Whole New Life

Today is 27 years since I first got sick. As my health improves, sometimes those years of being so terribly ill and constantly suffering feel muddy, blurry, fuzzy. Is this how trauma works? It's like I have lived three lives--the one before I got sick, the one of suffering and illness and the one of creating a life with a new family.

I am now a partner and a stepmom. I help run a house. Chris and I have been through constant uncertainty and stress in our time together--the result being that we grow stronger while the world around us tries to break us. I can't elaborate on our stressors, which is why I'm often more silent on my blog these days. Life has been hard, just in very different ways than when I was fighting every day just to survive. It feels as if every time we see an end in sight another hurdle shows up.

It's a whole new life, where chronic illness is still a constant, but in a much different way. It still dictates much of how I live each day, how much Chris needs to do to help keep things running, how much care I can provide for Hank, like not being able to help out in the mornings, and that I can't provide for us financially.

My 'normal' isn't like my friends who work and have families, but it's SO MUCH BETTER than I've ever known in 27 years that it's something to celebrate daily. Whether it's cooking dinner for my family, planting pots of flowers, taking Hank to the pool, going on a vacation with Chris, not needing a nap every day, being able to blow out my hair, emptying the dishwasher or taking care of the dogs, it's all new.

I'm still reinventing myself. Still trying to find my way through our current stressors to a place of figuring out how I want to use my energy to make a difference. Right now, that energy goes into helping Hank to learn new skills and become as independent as possible. To walk beside Chris in his grief. To nurture Tovah and Gershwin in their elder years. To do what I need to do to maintain the level of health I have now.

I can't help but feel that the past 27 years trained me to be resilient through our current stressors. Because chronic illness demands resilience. Constantly. Who would I be had I not become chronically ill and disabled? Would I be this resilient? Empathetic? Committed to relationships? Perseverent? Maybe, maybe not. But I still wouldn't choose chronic illness.

As I celebrate where I've come, I mourn the loss of a friend and fellow patient of Dr. Rowe's who died last week at the age of 45. This is my first friend loss and it hits hard. Shannon always had a bright shining smile even through her suffering and was always helping others. We met for lunch when I was near her hometown. She and her husband walked RRR with Chris last year. We texted and hoped to meet up again soon.

Chris and I traveled to her viewing over the weekend, where we were able to represent Dr. Rowe and RRR. On her coffin lay an RRR t-shirt. Donations were directed to RRR.

Every day of this new life is a reminder to savor it. Sometimes through all of our stressors it's hard to remember to take in all that is also good right now. I'm not sure I've fully processed the muddy middle of the years that often feel lost to chronic illness. It's easier to just grab ahold of what I have now and live it as best as I know how. I'm always acutely aware of how fragile this life is because I know not only how it feels to be unbearably sick, but also that it can be lost as quickly as Shannon's was.

This taste of health is glorious.

Blessings,

Emily