ALL OF SUMMER IS A STAIRCASE

For those of us who work in education, summer is a time of freedom, of dropping routines and lesson plans in favor of spontaneous trips to the water, or barefoot walks on hot pavement in the rain, or lunches at restaurants with outside seating — tanned skin, no make up. For all of us, July and August are a time for parties on the back lawn. And summer on Long Island means we are headed to the top of Bald Hill to catch a Grucci fireworks show, too, but none of those activities are very wheelchair friendly. To enjoy any one of these things from a wheelchair, I must be accompanied by someone else. Stairs, sandy beaches, lumpy grass, or sweaty, hot parking lots: all are hindrances to wheels and those who propel them forward for me because (ironically) I need someone else to get me to that summer feeling of freedom now. The freedom to move on my own left when these legs halted on me eleven months ago, so the joy in the freedom of the spontaneous summer meal on the beach became a big hassle. No freedom in that. The idea is to feel free. Can’t get that same vibe with a mandatory companion.

And while I’m complaining about it, let me add this to the list. Even though the sun and heat of summer are usually welcome treats for me after long seasons of sweaters and thick socks and blankets and drafty windows, that’s changed, too. My usual affinity for bikini weather and chances to cool off at the breezy ocean have been stifled. Driving with the windows down and my hair bunched up messy on top of my head are expected benefits of summer, a time that I rarely give in to the sound of a buzzing air conditioner over the serenade of the katy-dids and crickets. Unfortunately, this auto-immune disease has also rendered me ultra heat-sensitive. If my body temperature goes up even a little bit, my symptoms are very quickly exacerbated to the point that I am useless. My skin suddenly feels like it’s made of cement. The weakness and heaviness in my arms and legs and numbness in my face are so intensified that I can’t keep myself awake. So, that means no more daytime beaching. No more open windows overnight. No more sun-bathing. No more “tanning my hair” on a float in the pool, either. (That’s a dirty blonde’s summer trick for keeping her hair all sun-streaky through the year.) And I have now made a new enemy in the Long Island humidity, one that can still be appreciated for its ability to keep my hair curly, but nothing more. Sounds like the opposite of freedom, doesn’t it?

So it seems like all of summer is a staircase. Let me explain. As described in one of my prior blog posts, staircases and porch steps are my nemesis in any weather. Getting to the top of a set of stairs is a really big struggle. I can get to places on flat ground by walking slowly with assistance or being pushed along in a wheelchair, but stairs are a continued problem regardless. So, in facing this new season of hot weather and outdoor fun, where I have less of a schedule, I’ve come to the conclusion that the whole of summer is a staircase. Now summer itself is the continued problem. It’s just really challenging me.

However, if I put a pause on the pity party, I can admit that I haven’t yet met a staircase that beat me. Somehow, despite the challenge, I can always get to the top. Either Tom leads me and supports my elbow with his sturdy arm or my Black Lab Naomi lets me hold her collar while she pulls me upward on our staircase at home. It’s true that I may need to stop halfway to rest a while before getting there, and sometimes I crawl up, but I have always made it to the top.

So, have at it, summer! Put up your dukes! I’m adapting to this change of season. First of all, I found me a beach with handicapped parking that’s only steps away from the ladies room and the sand with a sunset view from the deck unmatched by dreamy vacation spots. I could even grab dinner there alone if I want to. I also started carrying a chilly pad that keeps my skin cool in the heat, so being outside for BBQ’s is possible. And I now let myself run the AC in the house and in the Jeep, and I use table umbrellas to keep the sun off of me when I’m outside. I gave in to the rolling walker to get in and out of backyard parties, and I dug up the trusty walking stick that my Mom brought back from Mexico years ago so that I can again walk out to our pool, even if slowly.

And, while I’m holding the pause button, there’s another cool thing that I do on my own, and that’s drive my Jeep. The weakness in my legs that’s brought on by standing and walking and holding myself up actually doesn’t hinder my ability to drive! My legs don’t need to hold up my weight in a car, so I get to have some freedom when I get behind the wheel. It’s a wonderful thing to push on that gas pedal and drive away, to move from one place to another alone. Because the driveway is just steps away from my front door, I can get there on my own even on a bad day. I go places where I don’t have to get out at all. I take myself to look at the water after getting a drive-thru cup of tea and park in the air conditioning. (The only hitch is that I am slave to my bladder. When she says it’s time to go home, I gotta obey. Not so bad.)

Being shackled to a looming MS diagnosis can’t keep me from being free. Needing to rely on wheelchairs and walkers and other people can’t steal my freedom either. Galatians 5:1 says “For freedom Christ has set us free; stand fast therefore, and do not submit again to a yoke of slavery.” So, how can I reject that and allow a feeling of oppression to sink in? If I know that God is for me, then who can be against me?  I may have to adjust my expressions of freedom for this summer, but only with the understanding that it’s temporary because I expect to be well. Besides, God says I’m free already — in every season. He says I can stand on His promises. So, no matter my medical diagnosis or symptoms, even with a lifetime of staircase-like summers, I am free to choose how to react. So, in keeping with the making-lemonade-outta-life’s-lemons philosophy, I reject the self-made prison of this illness and exchange it for the freedom of another joyful summer.

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