What not to say

This hilarious short film by Lauren Rowe (a double-lung transplant recipient with cystic fibrosis) is brilliant. I saved sharing it for holiday time, when socializing can be a bit challenging for the chronically ill who attempt to join the party while also adhering to the health rules that keep us alive.

We humans are pretty amusing when we don’t know quite what to say. So, we often say the first thing that comes to mind, which is not always a good idea. Here’s a doozy from my own life when a friend learned that I had disability status: “You’re not disabled! I’ve seen you walk!” It was difficult to know where to begin…

You and I both know when we’ve spoken too fast out of awkwardness—signaled by the instant inward cringe and followed by the scramble to explain or apologize or escape as soon as possible, the hope for forgiveness. Perhaps when we encounter someone’s health restrictions, all we need to do is pause for a moment and offer a gentle smile, or simply say, “I understand or I respect that.” Besides, I can tell you from experience that those of us with medical challenges are sick of having to talk about or, worse, defend our restrictions and routines. As one of my MGH heart transplant docs said, “I don’t expect healthy people to understand the rules we ask our patients to live by. But I would certainly expect healthy people to respect those rules. Your life is at stake.” Yup, it’s serious. But Lauren Rowe makes me laugh about everything. xox Deborah

Post Your Emergency Call List at Home & Work

Following my first SCAD-induced heart attack, one of the first calming and practical systems that my husband, Jack, and I put into place was to post an EMERGENCY CALL LIST by every phone in the house. It was about the size of an index card, in type that was easy to read without glasses. I laminated copies for our cars and wallets, as well as for people taking care of me at home. This single action immediately lowered our anxiety. If something went wrong—at home or out-and-about—anyone who was with me knew exactly whom to call.

If you, dear fellow resident of Cardiac Land—or captive of any illness—have not been completely hijacked from your world and are able to work, imagine how helpful this little list would be to your concerned co-workers. A truck or a workbench is your office? Surely there is some visible place where you can post your list. Put pride and embarrassment aside and consider your loved ones. This simple list could save your life.

There have been many versions of our list, depending on circumstances and team members. The version here is our Emergency Call List as we waited at home for my heart transplant. Pre-transplant when Jack was working, his cell and office numbers were on the list. Now that I look at the attached list again, I realize his cell number should have been there! Perhaps I caught the omission and corrected it; I no longer remember. The point is, scrutinize your list from time to time and be sure it works for your current situation.

You may find “plowing” and such to be bizarre phone numbers for inclusion, but transplant patients who receive The Call must drop everything and go to the transplanting hospital. For me, that would mean almost three months in Boston. So, Jack and I prepared this list anticipating the needs of friends in charge of our house during any of Maine’s volatile seasons, which can involve snow, freezing wind, and power outages. xox Deborah