When the holidays come around, you’re likely to see some people you haven’t seen in a while. Even if they have some insight into how you’re doing through friends, posts, the general grapevine, they sometimes tread carefully. It means they look at you, searching for the ‘real’ clues of your condition. It means they ask how you’re doing, sometimes with a voice that’s tinged in pity and a touch of condescendence – desperately trying to make it come off as empathy. I understand that it’s hard to talk to a person with an often terminal brain tumor, so I don’t mean to be unkind.
You have gotten caught up in the bustle of the holidays and living every day life with your family, trying not to let the thoughts of ‘when will it come back?’ hover over you, pushing out the enjoyment of the moments. Sometimes the questions about your health catch you off guard.
When there’s nothing much going on health wise, you try to skip the details of living with short-term memory loss, the monthly vaccine trial shots, the need for naps when the activity gets to be too much. You skip the fact that your hair is nearly evened out (meaning the hair that grew back after your random baldness is almost the length of your other hair), or that you’re done ramping up on your new seizure medications and you live every day doing what you need to so you don’t have another life threatening ‘episode.’ You skip the fact that your children are showing their anxiety, even in the excitement of Christmas. The kids ask if they’re going to get sick like the kids they saw on the St. Jude’s ad on TV. They ask about things that people have said in front of them, thoughtlessly forgetting that kids hear every word they say, even if they don’t LOOK like they’re listening. They avoid books in which one parent has died.
So I’ll just answer ‘I’m doing great!’ If they continue to look at you like, ‘No, really, how ARE you?’ I’ll throw in a ‘the tumor hasn’t returned yet.’ They still stare, expecting more details. Details that I’m tired of sharing and don’t want to share now, at this party I’m enjoying. I don’t want them harshing my mellow, as it were. So, I answer, ‘Well, I’m still alive, so I’ve got that going for me. Which is nice.’ I appreciate the interest in my health, really, but please take the cues. I’m taking the opportunity to live my life ‘normally’, don’t take that away from me. It can all change in a heartbeat, so let me enjoy my very fortunate string of Between Days. Let me enjoy the beautiful moments I’m lucky to have every day while I’m still fighting to be legendary.
Beautiful moments of happiness. You too can have them if you stop and appreciate the world around you.