The Way We Were

I'm one of the few who hates the song "Have a Holly, Jolly Christmas." For huge numbers of us, the idea that the season must be endlessly jolly is way too much pressure. Family questions and expectations, expenses and frantic schedules, travel and crowds, don't do a lot to create joy.

Yes, I look forward to family, friends, celebrations, and memories. But nothing is ever as perfect as a Hallmark card. And we truly don't want to leave anyone whose world is not so perfect behind.

That's especially true when someone close has a long-term illness like myasthenia gravis (MG). It can be impossible to avoid comparing this year to last. For some, that comparison can be pretty depressing.

• Last year I was able to cook the entire dinner
• I cannot imagine how I managed to shop for everyone
• I've gained 20 prednisone pounds
• How do I drive if I need to come home early?
• What if they ask me to play the piano?

In a perfectly objective world, cooking for 10 while tickling the ivories wouldn't be a measure of success. But in the mind of someone struggling with MG, it can seem like the very definition of failure.

Setting expectations

Sometimes stepping back and creating a set of reasonable goals is the best way to define the happiest of holidays. No one is judging - but maybe you. The trick is to re-imagine a pleasant, loving day. That might have to begin weeks before.

A gracious thanks-in-advance note to the family host can relax everyone. "I'm so glad I can look forward to your cooking ... please understand if I choose the softest foods, eat a bit less than others, or snack a bit early with my mid-day pills ..."

If the party schedule is built around a football game or sing-along, that last note might be especially important. If you show up at the door and drop some special schedule for your Mestinon on a frazzled hostess, it could be far more awkward.

What to Avoid

The holidays can not only be dangerous to your mood, but also your physical health. Respiratory illnesses are still around and love office parties and family dinners. Alcohol and snacks while dinner cooks are a recipe for aspiration. Stress is always a potential source for a flare. Just because Aunt Mim recommends that supplement doesn't mean it's okay.

Don't give up your normal routine or your normal cautions. New Years' will be a lot more pleasant at home than in the hospital.

What to Enjoy

Tradition may not be the best choice for the holidays. Is there something that you've never done that might be really special and less stressful? A night at a resort or a picnic on the beach? Dinner at a ski resort, or brunch near your church? Invite someone who doesn't cook either, and get a catered "to go?" Zoom with someone that you haven't seen for a long time, and then take a real nap? Just because you cooked for 20 last year doesn't mean it is an obligation forever.

For our part, I'm looking for a campsite near the beach. It's a long shot, but we'd be happy with peanut butter sandwiches in a new setting. Won't miss that turkey a bit. The extra funds can go to a local meal center.

Put away the mirror

There is no tape measure to evaluate your holiday spirit. There's no holiday expectation that you cannot redesign. No one will criticize - especially if you take the time to explain in advance. Redefine your image of a jolly holiday. Then share it.

• This year I'll write a couple blogs about some improvement I've seen
• Next year I'll find a new craft
• I'll eat peanut butter and send the rest to the homeless shelter

And join me in thanking all of the wonderful folks in this community for year-long support.