My wife has EGPA; I have EGPA by proxy

This is Pam Squires’ story:

Pam Squires says her life with her wife, Sarah Jones, who has eosinophilic granulomatosis with polyangiitis (EGPA), is like having EGPA by proxy. (Courtesy of Sarah Jones)

My wife, Sarah, and I attended a support group a while back and one of the care partners said “I have EGPA by proxy” at their introduction — and it stuck. Every part of my beautiful wife’s disease, eosinophilic granulomatosis with polyangiitis, touches my life.  It has altered and continues to alter every aspect of who I once was and who we were as a couple. I have EGPA by proxy.

No two days are ever the same. Awesome. It’s not as if I like predictability, or a routine, or anything, I write asI put on tennis shoes to do the same Denise Austin low-impact step aerobics routine I’ve been doing since 1985.

The days, weeks, and months can be wildly erratic and terrifying. Hey, there’s the gal that I married 28 years ago. Wait a minute, who is that person in the kitchen? Hey, what a fun time we had last night. Wait a minute, time to head to the ER because Sarah has gut pain, a high fever, and can’t breathe. Hey, let me hug this doctor who finally gets what she’s going through. Hey, what should we do to celebrate our 30th anniversary? Wait a minute, is this the infection that will bring on sepsis and we won’t even get to our 29th?

Squires, left, and Jones pose for a photo during their bucket list trip to Molokai in Hawaii. Jones became sick three days after they returned home and was diagnosed with EGPA a year later, in 2021. (Courtesy of Sarah Jones)

How do you deal with watching the person you love most in this world suffer? That’s the $64,000 question and you just have to figure the answer out along the way.

We’re still in the process of saying goodbye to our old lives, which is necessary to say hello to what our new life will be like. I think we’re making pretty good progress.

We’re crafting a life and home that can expand and contract in response to the things we can’t control.

We’re working at filling up the moments of adequate health by expanding with peace, joy, and productivity, while also downsizing our finances and responsibilities for the contracting moments of sickness and disease.

Hey, life can be wildly erratic and terrifying. Wait a minute, let’s grab a glass of our garden-brewed ginger mint tea and go out for another beautiful sunset drive to celebrate our beautiful lives in this new and different world.

I have EGPA by proxy and I wouldn’t trade my life for anyone else’s on this planet.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series.