I believe that we are emotional, social creatures living in a physical world, not physical creatures socially experiencing emotions. Every physical challenge is packaged with its fair share of emotional repercussions, and EPP is no different.
It should therefore come as no surprise that my decisions to go outside are as often based on feelings as they are on logic. So sometimes I go out when I know I shouldn’t, and this adds to the perception that my tolerance to sunlight is inconsistent.
To best explain this, consider the following scenario.
A friend invites you, with members of your social circle, to go swimming at a party, but you know you would be forced to sit on the sidelines and not participate. Your loved ones may pressure you, and you may genuinely want to spend time with them, so you decide to attend. You sit on the sidelines and watch your friends have fun in the water.
On the surface, this is a rather simple scenario that happens to many people at least once. For me, this is very common and loaded with emotions beneath the surface.
The first emotion is gratitude at being socially included. My life has been nagged by social isolation for one reason or another and being wanted feels good. The next emotion, however, is apprehension. I know that I should not go to an activity like this because it would be a big risk, all for the sake of watching other people have fun. Should I decline? If I decline, I will be safe but probably alone and I may regret what I missed.
I feel, buried deep down where I swore I’d never tell anyone (and now I’m publishing it publicly on the Internet, go figure), a little bit of anger that my condition was not considered for when this activity was planned. Every time I feel that small spark of humanity, I immediately feel overwhelming guilt. But the anger is still there, just twisted by secret shame against myself now, and I begin to wonder if I was only invited because they thought it would be rude to exclude me. Maybe they thought I wouldn’t want to go, am I supposed to say no? A deep, contemptible, self-absorbed part of me, that nay-saying little devil whispering in my ear from my shoulder, even wonders if they planned the activity like this because they didn’t want me around.
Reason kicks back in and says they probably just didn’t consider it. But then my shoulder-devil says, “They didn’t consider it because they don’t care enough for you.” Get thee hence, shoulder-devil! They invited me because they care for me, not the other way around. That jerk always has a comeback, though, and says, “If you don’t go, it means that you’re weak.”
All this happens within my mind in a split second right after I am invited. My time to deliberate is over: “Uh….sure, I will go…” Now I’m committed, what have I done?
So I go. I show up at the pool/beach/pond dressed up like an Eskimo while everyone around me is dressed in their skivvies. I try and often fail to find a place that is shaded from both the sun overhead and its reflection off the nearby water and settle down to watch. My shoulder-devil is there, reveling in my discomfort and misery but reminding me to “be tough” and not show any weakness to those who break away from the fun to talk to me. I can sense that they feel guilty that they’re having fun while I can’t, which makes me feel even more guilty for making them feel guilty.
Then I sense an EPP attack coming on. Great, just what I needed. Let’s throw a whole lot of physical torture into the mix of this emotional baggage.
Survival mode, thankfully, kicks in and overrules my shoulder-devil with common sense and gets me out of there. I return home, shut off all the lights to hide in the comforting dark, and pray that I don’t get sick. My shoulder-devil comes back and says, as though he had been the voice of reason all along, “Why did you do that? Are you stupid?!” Thanks a lot, as though I needed to feel worse…
This is indicative of how I lived my life for a long time, as a teenager and into my mid-twenties. Eventually, I made a tentative deal with myself to take better care of my health. When I had my kids, this deal was sealed. I knew that I had to be there for them and to do that I had to be in good health. Even though a similar emotional battle rages inside when they are involved, so far my reason has been the victor because it is backed up by the positive emotion of love for them.
Thanks to my little shoulder-angels, who love me and are just happy to be with their dad anywhere.