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| Guess who's the morning person? |
In that spirit, there is one practice that I have asked Andy to do for me. Now, with my health as it is, I run out of energy but not in the typical way that people run out of energy. When your average person is tired, they rest--maybe just a good night's sleep--and can move on with their lives. When I get a certain kind of tired, it's flat-out dangerous. Other persons who live with chronic fatigue or those wishing to understand them, I suggest this article as a great resource. I have to constantly budget my energy. It's difficult living with an invisible disease, in that I have few external markers to what I might be feeling (partially because I'm good at putting a smile over it), and the constant calculations, well, I have to balance my need to belong with my need for self-care. And it's exhausting. And it's oddly lonely.
Enter Andy's new habit: I have asked Andy to ask me "How's your energy?" at least once a day. Now, part of this habit was to say this EXACT phrase. We'd had a couple discussions on this where I told him that he wasn't meeting that need because of the misunderstanding that "How are you?" counted with the same weight. "How are you?" is a ritual, part of a call and response that while polite does not seek an honest answer. Similarly, "How was your day?" is an invitation to talk about work or other things that I have been thinking about. "How is your energy?" by contrast is specific and more importantly a sign by Andy that he recognizes that this is something that I'm constantly dealing with. In that moment, he's with me in solidarity, and he's supportive in a way that I don't tend to receive a lot of support when I'm not actively hospitalized/recovering from something massive. I also have an invitation, then, to talk about a subject that otherwise is often quashed. My disease is chronic. It can get better, but it's never over.
I've mentioned before that every time I am told about an event or am invited to join a group or asked to be part of something, I immediately go into some calculations in my head, trying to size up what my energy might be at that time. This has led to more and more planning in advance for Andy and I. On the one hand, work already has me slated for a few things next February, Andy even further out from that, so we plan vacations with a certain amount of care anyway, making sure that we at least have time blocked off where we can, penciling people in. On the other hand, seeing how my week is spread out, I can assess much better how I need to prepare for my week. Maybe I need to skip the gym on Monday to have enough umph on Wednesday or I should skip choir this week so that I can enjoy a drive out to see some friends and family that weekend or I might decline spending time with friends to take a night in and recover. I plan. I stratagize. I ensure that I have enough self-care time to balance out.
What does this mean, then, when faced with spontaneous plans?
Well. Sometimes it's okay; sometimes it's not. On the whole, I don't think that anyone holds a grudge when I decline; when possible, I do try to follow with an alternative date, since someone made the initiative to reach out to me.
However, I always tune in to how the ask is made, regardless of my decision. Scenario A "We're blowing through town on Xday--hold Xday open for us!" is vastly different from Scenario B "We're blowing into town on Xday; would you be available any time between X and Y?" The former isn't really a question--my time is demanded and expected. Sometimes Scenario A comes in a more subtle form that involves a series of emotional pleas settling down to the main point of "drop your schedule for me;" the demand is still present, just wrapped nicely. (That being said, there is a difference between "it's an emergency" and "this is planned but we didn't bother telling you before now.") My brother said something recently that resonates with me: a question that you can't say no to isn't really a question. Yes, I'm not obligated to go in augmented Scenario A, but I don't feel that way, with how the emotional leverage has been dumped in.
Scenario B, firstly gives me an actual choice. It recognizes that I have a schedule instead of making assumptions, extending a courtesy not shown in Scenario A. While I will want to be there and be included, I don't have the added pressure. I am wanted, but I am not demanded.
On the event that I do refuse, asking the question "Are you sure?" or variants thereof up the resentment factor twenty-fold: it is hard for me to refuse when I would much rather do everything, so trying to change my decision feels like a total disregard for my feelings and all of that careful, constant calculation. I know my body best, unless there's a status bar floating over my head that I've never noticed.
I wouldn't want anyone reading this to be afraid to ask Andy or myself to a last minute anything--sometimes, it fits in the schedule magically and we're all glad for it. We love spending time with people and having adventures. We try to fit in so many things to our schedule that we've hit burn-out far more than is healthy.
How we check in with each other is different because we have different factors; how we plan is different because we have different elements to consider. And so does everyone else. I try to treat people's time with the same courtesy that I expect them to extend to mine. I like to follow up the "How are you?" ritual with a genuine question about the other's well-being because I know deep in my bones that there are people that need that invitation, outside of the surface pleasantries.
I have a few key moments that stick out in my mind where someone reached out to me unexpectedly and how much it meant in that moment. Jared O. asking once how my health was specifically one day at church; Craig C. with some probing questions into what some of my euphemisms actually meant; separate reminders from both of my mothers pointing out that they understood that I was hurting more than I let on (both fathers on separate occasions, too, now that I mention it). Those points stick out so vividly because they are rarer than I would like. I do not mean to imply that others don't care if I did not list you specifically, but these are samples of a significant moment where that concern made it through in a way that touched me, addressing a need I didn't realize was there in that moment.
I want to spread that on. Even if it's something as small as setting plans with someone in a way that acknowledges them and their needs. This is a small olive branch of courtesy, but I believe it is appreciated on many levels. In doing so, I recognize in one breath that they have components in their life happening that I may not know about while also stating that I appreciate their company. I find that these simple shifts in wording, potentially opening the door for deeper connections, can continue to build more empathy around us.
Enter Andy's new habit: I have asked Andy to ask me "How's your energy?" at least once a day. Now, part of this habit was to say this EXACT phrase. We'd had a couple discussions on this where I told him that he wasn't meeting that need because of the misunderstanding that "How are you?" counted with the same weight. "How are you?" is a ritual, part of a call and response that while polite does not seek an honest answer. Similarly, "How was your day?" is an invitation to talk about work or other things that I have been thinking about. "How is your energy?" by contrast is specific and more importantly a sign by Andy that he recognizes that this is something that I'm constantly dealing with. In that moment, he's with me in solidarity, and he's supportive in a way that I don't tend to receive a lot of support when I'm not actively hospitalized/recovering from something massive. I also have an invitation, then, to talk about a subject that otherwise is often quashed. My disease is chronic. It can get better, but it's never over.
I've mentioned before that every time I am told about an event or am invited to join a group or asked to be part of something, I immediately go into some calculations in my head, trying to size up what my energy might be at that time. This has led to more and more planning in advance for Andy and I. On the one hand, work already has me slated for a few things next February, Andy even further out from that, so we plan vacations with a certain amount of care anyway, making sure that we at least have time blocked off where we can, penciling people in. On the other hand, seeing how my week is spread out, I can assess much better how I need to prepare for my week. Maybe I need to skip the gym on Monday to have enough umph on Wednesday or I should skip choir this week so that I can enjoy a drive out to see some friends and family that weekend or I might decline spending time with friends to take a night in and recover. I plan. I stratagize. I ensure that I have enough self-care time to balance out.
What does this mean, then, when faced with spontaneous plans?
Well. Sometimes it's okay; sometimes it's not. On the whole, I don't think that anyone holds a grudge when I decline; when possible, I do try to follow with an alternative date, since someone made the initiative to reach out to me.
However, I always tune in to how the ask is made, regardless of my decision. Scenario A "We're blowing through town on Xday--hold Xday open for us!" is vastly different from Scenario B "We're blowing into town on Xday; would you be available any time between X and Y?" The former isn't really a question--my time is demanded and expected. Sometimes Scenario A comes in a more subtle form that involves a series of emotional pleas settling down to the main point of "drop your schedule for me;" the demand is still present, just wrapped nicely. (That being said, there is a difference between "it's an emergency" and "this is planned but we didn't bother telling you before now.") My brother said something recently that resonates with me: a question that you can't say no to isn't really a question. Yes, I'm not obligated to go in augmented Scenario A, but I don't feel that way, with how the emotional leverage has been dumped in.
Scenario B, firstly gives me an actual choice. It recognizes that I have a schedule instead of making assumptions, extending a courtesy not shown in Scenario A. While I will want to be there and be included, I don't have the added pressure. I am wanted, but I am not demanded.
On the event that I do refuse, asking the question "Are you sure?" or variants thereof up the resentment factor twenty-fold: it is hard for me to refuse when I would much rather do everything, so trying to change my decision feels like a total disregard for my feelings and all of that careful, constant calculation. I know my body best, unless there's a status bar floating over my head that I've never noticed.
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| Yes, I'm bloody-well sure. |
How we check in with each other is different because we have different factors; how we plan is different because we have different elements to consider. And so does everyone else. I try to treat people's time with the same courtesy that I expect them to extend to mine. I like to follow up the "How are you?" ritual with a genuine question about the other's well-being because I know deep in my bones that there are people that need that invitation, outside of the surface pleasantries.
I have a few key moments that stick out in my mind where someone reached out to me unexpectedly and how much it meant in that moment. Jared O. asking once how my health was specifically one day at church; Craig C. with some probing questions into what some of my euphemisms actually meant; separate reminders from both of my mothers pointing out that they understood that I was hurting more than I let on (both fathers on separate occasions, too, now that I mention it). Those points stick out so vividly because they are rarer than I would like. I do not mean to imply that others don't care if I did not list you specifically, but these are samples of a significant moment where that concern made it through in a way that touched me, addressing a need I didn't realize was there in that moment.
I want to spread that on. Even if it's something as small as setting plans with someone in a way that acknowledges them and their needs. This is a small olive branch of courtesy, but I believe it is appreciated on many levels. In doing so, I recognize in one breath that they have components in their life happening that I may not know about while also stating that I appreciate their company. I find that these simple shifts in wording, potentially opening the door for deeper connections, can continue to build more empathy around us.
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