So, I noticed something new this year. I don’t really enjoy the holidays any more. Not that I’m about to go full-blown Grinch or Ebenezer Scrooge or anything, but this season is rasping across my nerves like a rat tail file across a blackboard. And this bugged me, until I saw a post on Facebook in a group for people with chronic neurological problems (I assume semi-terminal brain cancer counts), that pointed out that the holidays are especially hellish for neurological patients because they contain all of our least favorite things: pressure to conform. Weird sunrise/sunset hours (this sets dementia patients off like a fire). Meeting hordes of new people. Having people we don’t remember from our long-deceased past show up.
Just seeing that made me feel so much better about myself — if only that I wasn’t alone — that I brought it up in a cancer support group (“My new normal is, I loathe the holidays”), and another survivor thanked me for saying that, because she realized she was horribly fatigued, and didn’t want to grapple with lights, trees, and Christmas cookies, as she has in the past.
Normally, I’m a big fan of, “Just treat cancer patients the same as everyone else,” but it did make me realize that there might be a special exception for chronic disease patients when it comes to holidays. I can only really speak for myself, and some of these are exclusive to neurology and/or cancer patients, but I feel fairly safe in issuing some blanket recommendations any time you host a chronic disease patient or cancer survivors:
- Keep it small and short — Most of us are immunocompromised (susceptible to infections), so, fewer people is better. Most of us are struggling with fatigue, too, and chemo brain will keep us from being the life of the party (feel free to ask us if we’re willing to share our medical marijuana products, though). I’d recommend you ask us, beforehand, how much we think we can take, and then make it slightly shorter and smaller. And let us go home any time we want, no questions asked.
- Remove the guess-work — If you want us to bring something to the party, bring a hostess gift, whatever, tell us, specifically, what to bring. Otherwise, you’re liable to get leukemia patients showing up saying, “I brought extra zofran and ativan for everyone, because I don’t know anything about wine, and I’m too tired to research it.” Long, complex baking projects involving us should probably be avoided, too, for similar reasons.
- No solid commitments, please — I understand the need for headcounts when making meals or seating charts, but most of us are taking life on an hour by hour basis — we might be fine next Wednesday; we might be in the ER due to crashing WBC counts. Seeing that “RSVP” notice will scare some of us off. Just call us and ask if we’re interested in coming by; no pressure if we can’t make it. Or just have an “open house” type of party where guests can just show up that afternoon or not. Believe me, we’re grateful for the invite, but just know that the sudden pressure to be in a particular place at a particular time can be extraordinarily off-putting.
- Dietary restrictions — If we’re in radiation, we can’t get too much Vitamin C. Chemo might make food taste disgusting (one of my breast cancer friends can only stomach sweets). Ask about this, specifically, if you invite a survivor. We’ve accepted gluten-free people, folks with nut allergies, and vegans into society, it’s not that hard to accommodate someone with new dietary rules.
- Climate control — This is a biggie, believe it or not. A lot of us are on drugs that can screw with our hormones. Most of my leukemia and breast cancer friends get hot flashes. I got horrible cold sweats on infusion days. Setting the thermostat a few degrees up or down is not a major concession, but it will make some of us dramatically more comfortable.
- ADA compliance — A fair number of us have some sort of mobility issues, even if we’re not in wheelchairs. Steep stairs, icy walkways, cluttered halls — these are inconveniences if you’re able-bodied; they’re a major health hazard if you have a chronic limp.
- Be extra sensitive — Unless we bring up our physical appearance or medical condition, don’t refer to it. And keep in mind that most of us have just had friends and family drop us like a hot potato after the diagnosis; we’re on mind-bending amounts of drugs; we’re not in a safe mental place to complain if your flashing Christmas tree lights are giving us a headache. You have to be a little proactive here in reading us and reducing stress, or creating an environment in which we feel safe enough to complain. And don’t take it personally if we do complain — this isn’t where we wanted to be in life, either.
- *BONUS* Minimal decorating/rearranging — Particularly if we’ve been in your house before. This is a highly specific one for neurology patients, but our spatial skills are probably off. Seeing a place we’re familiar with that’s suddenly and dramatically different adds a layer of stress to the proceedings. Or, if you do this, make it fairly obvious and simple, so we’re not trying to figure out if we’re going insane for suddenly feeling “on edge.”
Happy, healthy holidays, folks.