This year has seen so many wonderful things for me, I can't even begin to describe. I've been able to do physical therapy, and all my doctors have been able to see great progress. My disease has a cure, even if we haven't been able to get access to it yet. I've been well enough to help take care of my step-brother, himself, a disabled Vet. I was well enough to cook our entire Thanksgiving feast, something I haven't been able to do in years, and though I was exhausted afterwards, I felt whole, having been able to complete my part in our annual traditions.
That's one thing that is really lost when one becomes disabled---our ability to participate in events that help us feel the flow of the year. When the flow of our lives is interrupted by a disease, what used to be the change in seasons is now a change in doctors and medication. What used to be the delicate passage of time has become the ticking off of days in a prison, never knowing when, or if you'll ever be set free. When life becomes about symptoms and self-care, spending energy on holidays can be impossible. It's easy to become detached, and feel outcast. Because we can't participate, we lose touch with the sense of joy we used to get.
It can be even worse for caretakers. They can feel caught in the middle, wanting to have fun, but feeling guilty for being well, and being able to enjoy these times, while their sick loved one cannot. They may lose their own sense of joy in the holidays because diseases don't take a vacation, so neither can they. They may try to go out and have fun, only to worry the entire time that they're away, so that going out and trying to take a break can be even more stressful than staying at home (at least you know nothing's going wrong, then).
And I was going to write some Pollyanna-ish things about,
"If you can't do what you love, do what you can instead!" But honestly, that can make me more depressed than just trying to pass on the holidays altogether. Doing holidays half-assed, that is, not being able to do the things I used to do, but doing something close to it, to try and recapture that old feeling, just ended up being a reminder of why things sucked now. It was honestly much easier to just let go of the holidays altogether. That was something that happened on planet wellness. I didn't live on that planet anymore.
Here on this new planet, we didn't have winter holidays. It just got cold, you got a break from appointments, and you had to be really careful about stocking up on medication because the pharmacies closed on weird days. Presents aren't given, because no one has any money for anything extra anyway. Time is spent, instead, on studying the new changes to Medicare, which require a degree in government-speak before you can understand them.
Winter was the time when other people spent as much time indoors as me.
Now that I'm starting to make visits back to planet wellness, I can say that it's really good to be home again. I'm not going to be "here" for Christmas yet, but my doctors and I are working on it. And yes, I'd rather it be an either/or thing. I don't want it to be the "this is what I can manage" holidays. I either want the holidays the way I want them, or I want to skip them entirely. If I try the middle road, it hurts my heart more. I "miss out"
more if I try to do the holidays in a way that's new, because I can't manage tradition health-wise. I miss the holidays
less if I don't participate at all.
Of course I want to enjoy the holidays. But if I can't, then I'd rather do without than be teased by visions of what I used to be able to enjoy. So my
real suggestion? If you have to have holidays, find a culture that's completely different and start following
their holiday traditions. (There are a lot of traditions from Asia that celebrate the seasons in very beautiful ways.) If you are religious, and following the Holy Days is important to you, contact your local church. There are usually volunteers who will bring the ceremonies to you, as an act of service, if it's too difficult for you to make it out.
Now, for caregivers, if you still want to go out and enjoy the holidays, without the baggage of guilt for leaving your sick loved-one behind, my suggestion is:
take a "Guest Book" with you when you go out. When you talk to folks, ask them to take a moment to write some well-wishes to the person you had to leave at home. When the party is over, you can bring the Guest Book home for them to read, to let them know that people were thinking of them, and that they were missed. Bringing home a doggy bag with samples of all the goodies from the party is also a good way to help the sick person feel included. As they read, they can sample the treats, enjoying the quiet after-party with just the two of you.
By asking other folks to send their well-wishes, you also strengthen the sick person's ties to the community when they can't go out themselves. You're doing them a service by making sure they're not forgotten at the celebration. This means a lot to us. We feel included, even though we're not able to be there ourselves. It's easy to feel left behind, even if the cause of our not going is no fault of our own, it can feel like exclusion. It can feel like people don't
want us around, even if that's far from the truth. A Guest Book is solid evidence against these fears. It shows us that our presence was desired. It shows us our value to the group, and also reminds the group that we still want to be around, even when we can't. (That helps keep future invitations coming.)
I am thankful that I was able to enjoy "Turkey Day" in the way I like. I had missed it. But I'm also thankful of the path I chose when I couldn't enjoy the day like I wanted. It helped me survive the heartache.
I hope you are staying strong through this time, whatever path you choose for yourself.
