All day yesterday my hubby looked forward to getting off work and mountain biking in the foothills with his guy friends. Yesterday afternoon I was hit by my “stop me in my tracks” narcoleptic-like symptoms. These have hit me for years. I don’t get them often, but when I do, it is always unexpected and so far impossible to get of without going through them.
I suddenly feel sleepy, then sleepier. I fight to stay awake, I snack, I get on the computer, I snack some more, I look for conversation…(If I could exercise I would put on my running shoes or jump in the pool for a work out). I try everything I can think of to avoid falling asleep. I do this because when the sleep gets me (which it always does), I wake up unable to move at all, temporarily paralyzed.
Yesterday, when I awoke at about four in the afternoon, I laid on my bed thirsty and having to go to the bathroom. Since my body wouldn’t move I had to let both needs be and wait. Wait for my hubby to come home from work or one of my daughters to come in the bedroom and realize that I couldn’t move. Fortunately I only had to wait an hour yesterday. My husband came home early to go mountain biking.
When I put myself in this shoes, coming home psyched to do one of his favorite things, to ride the trails up and down the foothills, free of responsibility, in the company of friends, I can only imagine his disappointment at finding me unmoving on our bed. I know his first thought is that he needs to cancel his plans. And most likely “This really sucks!”
When my hubby found me unmoving, I slurred inaudible words (because my tongue wouldn’t move) “You are still going to go biking tonight!” ”What?” he said, “ wait to talk until I give you your medicine.” He put the tablet on my tongue and the tip of a straw in my mouth. I swallow water and the tablet.
He told me he’s be right back and walked out of the room with the phone. I could hear him call one of his biking buddies, “There’s a chance I won’t be there. Go on without me” He said this without any self-pity. I wanted to scream, “You’re going to go! Don’t let them leave without you!
When he came back in the room, he stood beside me and put his hand on my arm. I frowned at him, feeling terribly angry. I was not angry with him but at this illness that dares to take his one night of freedom away. I yell at him softly slurring–”Call them back. Say you will be there! The medicine will help, I’ll be okay.” He told me I was too sick and that he needed to stay. I “yelled” at him again.
He did call them back and they gladly gave him time to set me up with what I needed –a trip to bathroom and water, food, cell phone close to me. He went, reluctantly, emanating guilt and worry.
The medicine did help (along with time). After awhile I was able to pick up my laptop. I felt like trying to write a poem. I am not a great poet, not even a good poet, but I love when words fall out of my brain, over my tongue and onto a page. I wrote a short, not so good poem, and enjoyed it.
When my hubby came home, sweaty and happy, he asked if it’s hard for me when he goes biking and has fun while I’m stuck at home. “No” flew out of my mouth, because it isn’t hard for me. I feel happiness …I feel alive. I feel released from my own guilt for being sick and needing him to care for me. Knowing he is out there free in the hills, I feel triumphant!
When I write a poem, any poem, like I did last night, I have the same feeling of triumph. This illness makes finding words difficult and putting them together even more so. I am exhausted after trying. But when I can write, however I can write…for that time, this illness can not steal my love for playing with words.
What a night…a mountain bike ride and a poem…anyway.