A quiet celebration

Last week (on my birthday, March 30), I was recognized as a 2023 Pacific Business News Women Who Mean Business honoree. Originally, I'd planned to celebrate at the event with a table full of some of my favorite female colleagues and friends.

But as the event date grew nearer, my anxiety began to build.

In late February, Pacific Business News (PBN) hosted a reception and photo shoot for this year's honorees. I begged off since it's hard for me to leave home as a caregiver, especially evenings. When the follow-up note came from the photographer sharing options for make-up photo sessions at PBN's offices, I once again sent my regrets. The photographer, Eugene, was persistent in trying to help me find another time. I wrestled with my reply and finally sent him this note:

“Thanks, Eugene – I don’t mean to be difficult (truly!), but I’m a caregiver for my husband who has ALS so I need to stick close to home in case he needs me. There’s a lot of complexity in how we currently make living with ALS work. At this point, I’m 100% virtual with work and have stopped scheduling meetings outside the home other than medical appointments because I frequently have to cancel at the very last minute which is disruptive to folks who are expecting me and has taken a toll on my mental health as far as constantly letting people down. And all of this is further complicated by several pending appliance repair appointments. I don’t mean to diminish the importance of the award or need for the photo but if there’s any way to make this work without an in-person visit I’d be extremely appreciative.”

When I hit the send button, I had a knot in my stomach. But Eugene was incredibly kind in acknowledging my very candid (and possibly TMI) note. We sorted out the photo situation to everyone's satisfaction. But as soon as I sent that message to Eugene, I knew I had to cancel my table for the awards dinner and send my regrets.

Once again, the team at PBN was extremely supportive and tried to help me find a way to attend. It's not an exaggeration to say that sticking to my “no” caused me more embarrassment and angst.

But I recognized that if I had this much anxiety about attending a photo shoot, there's no way I'd be able to enjoy the extended time away from home and social pressures of attending a gathering of this nature on my own. As an extreme introvert who's lost her once vibrant (in person) people-ing skills and well-toned socializing muscles from being so isolated at home due to Covid and caregiving, I could already feel the social anxiety bubbling up.

So I stayed home.

And without getting into the details, it was for the best. My husband ended up needing my help with things that we don't yet have anyone else available to safely assist him with in my absence.

So this week I've been feeling a bit down. Yesterday, it took heroic effort to get out of bed and do all the things that needed to be done.

I've given myself lots of grace, but sometimes you start to feel overdrawn on social capital–both personally and professionally.

As a caregiver I've found that it's difficult for most people to understand how grueling this journey is. It takes a very real physical toll on your body, as well as unrelenting psychological pressures. There's the grief and sadness for what we've already lost as a couple, as well as the continuing progression of a brutal disease with no (current) cure.

I'm sharing this here and elsewhere to share my caregiving story in the hope that it helps shine a light on what others may be experiencing and how to best support caregivers. There's no single ‘right' way, but I know for certain that many of us bristle as being reminded to take care of ourselves (it feels incredibly condescending and patronizing), and find open-ended offers of help and support too difficult to accept (it feels like one more ‘to do' to have to manage).

So to everyone else out there juggling caregiving and other hard things while still striving to make a difference and maintain an identity beyond that hard thing: you are amazing and I applaud you.