Stolen summers

I didn’t always hate the summer. When you’re a kid, summer represents freedom and sleeping late and vacations and swimming. You wait for the heat to come, for the sun to stay high in the sky longer, for the stickiness of sweat from playing and the grime of dirt stuck to your skin. You wait for the clanging of the final school bell and the shouts of students as they rush out of school and into the summer. You wait for it and wait for it and when it arrives, you celebrate it.

I didn’t hate the summer until I was an adult. I was afraid of fish so ocean swimming was fraught with danger. We didn’t have a pool. We camped a lot when I was growing up but stopped doing that when I was a teenager. I worked in school age childcare summer camps so it was exhausting, the only kind of exhaustion I have encountered that has ever rivaled the day to day tired of mast cell disease. I hated sand. I hated sunblock. And that was even before summer started making me sick.

Heat is probably my absolute worst trigger. My body does not do heat well. I turn bright red almost instantaneously. I feel faint. I get nauseous. Any sunburn blisters. I have scars from them. My diagnosis with mast cell disease legitimized my aversion to summer. I could hide in the darkness of my apartment in peace. There were few things that could convince me to go out in the summer heat.

The women in my family go away for a girls’ weekend in Ogunquit every summer with some of our close friends. I was in pretty rough shape the first time we went. I was super sick all the time and so unhappy with the 30 lbs steroids had tacked onto my body. I had a PICC line and couldn’t go swimming so I just hid inside with the air conditioning until evening arrived.

The following year was different. I had had GI surgery a couple of months before and had started a reconditioning program that was working for me. I had lost a lot of steroid weight and was much less reactive. I also had a port by then so I could go swimming. The Atlantic coastal waters in Maine are so cold that it made my arms and legs numb as a kid. But it was so hot that weekend that the water just felt refreshing. I stayed in the ocean for hours. For the first time in a decade, I remembered why I had once liked the beach.

I have been more stable since this past spring. This summer has been very different. I have been more able to travel. I have been to Mexico, Ogunquit and Florida in the past ten weeks. Summer parties and cookouts are less complicated because I can eat many common foods again. I can have ice cream at night. I can take long walks to the beach with Astoria. I can do fun summer things with my nieces and nephew and friends. I don’t always feel wonderful and sunlight and heat are still tiring but this is a wholly different experience. I am not afraid to leave my house. I am not afraid to eat.

We are now just a few weeks from the end of the summer. I love fall. It has always been my season. I love Halloween and spooky things and scary movies. I love the cooler weather. Every August feels like an obstacle to getting to autumn.

It doesn’t feel like that this year. It feels like something amazing is slowly winding down. I’m not ready for the wind to be cold again. I’m not ready for a dark sky watching me when I walk after dinner. For the first time in my adult life, I don’t want summer to end.

I wonder how many summers I could have loved if I hadn’t been so sick. Would I have loved the sun? The beach? The heat? Was this stolen from me, like so many other things?

I am trying to commit every moment of this summer to memory. Because it will be gone soon. And I will miss it.