I have a friend who is having a fun Saturday morning get together right now. 10 AM. A morning with the gals. A “retiring from 9-5” party for someone starting her own business.
I should be there.
Rheumatoid arthritis keeps getting in the way. Everything within me is sitting beneath the surface, ready to erupt grief, frustration, anger, sorrow.
My husband has been snoring for years, worse all the time. Gasping for breath. He finally fills out the paperwork for a sleep study. A rep drops off the gadget he should wear at night. “I will be back tomorrow morning to pick it up,” he says. But that night I tell my husband it’s not a good night. My neck is flaring up. I can’t sleep on the couch. I can’t stay awake all night. I can’t not tell my husband to “Roll over!” He literally needs the bed. I want these results to be accurate.
The next morning I text the rep. “Can we keep it until Monday?” “Yes,” he texts back. “But have him do it 2 nights.” Two nights? Well, we’ll see.
Friday night. My husband gets the gadget all ready. He says, “I’m sorry.” He sleeps. He snores.
I read . . . and read.
Finally I move to the couch and prop myself up. 1 AM. . . 2 AM . . . I can hear him gasping for breath from the other room–which is good. The machine is recording it.
I can’t lay down on the couch to sleep. I try. It’s going to destroy my shoulders. So I do a puzzle on my ipad.
3 AM. 3:15. . . 3:30. I finally go to the bed. I lay there as he snores. I want to slug him. I love him, but I still want to slug him.
3:40 “Honey, I am sorry but I have to sleep. Can you go to the couch?” He gets up and leaves with a pillow. He is immediately asleep, snoring. I lay there. 4 AM, 4:15. I ache everywhere. Finally I drift off. . . I hear my son. My husband had gotten up to get him something and come back to the bed. “What time is it?” I ask. “7:45.”
7:45. And I can’t even lift my arm to scratch an itch on my head. Can I do it? Can I go? I think to myself. Oh, Lord, I really want to go. It will be so. . . fun! I just want to have fun! If I sleep till 8, shower, leave by 9ish to be there at 10? Can I drive? The shower alone will exhaust me. What can I wear that would look nice? Everything I have is for the 15-pound less me. I can’t deal. . . I go back to a half-sleep–grieving that I have to make a decision. And yet, if I face reality, the decision has already been made.
8:10. Last week I got up. By 10 AM I was at my son’s karate graduation. I just wanted to do something for me! I cry out internally. God, why do the things I want to do for me never seem to work?
I had no choice about last night. The rep said two nights. I have to sleep Sunday night. I have to be at the infusion center Monday morning at 8:30 AM. I have to sleep Sunday night.
I have to prioritize the things I do. But why does my illness always have to be the first priority? I have to get the infusion. It has to be 2 weeks after the previous one. My husband has taken the day off work because I have to have someone else drive me. The insurance has paid out $12,000 for it. Other options didn’t exist. I have to be there.
My life is a series of “have to.” I have to sleep, or at least commit to trying to sleep. I have to get my medication. I have to. What about me? What about my joy? Don’t I have to embrace joy? Should not I only be compelled to have joy, but insist on it?
I am sad. So sad. I email my friend at 8:30 to tell her I can’t come. Last night I was nearly throwing up from a medicine reaction again and yet I was at a store trying to find a little gift. All pointless. Why does God allow my illness to eclipse the joy I grasp for?
I hardly have any friends. Truly. People would think I am kidding, but I somehow missed out on connecting with other women in my thirties. I was busy with ministry. . .and survival. And now, at 43, I am trying to start over. Turn women I know and admire into actual friends. They get together frequently. I keep missing them. Book release parties, girl’s night out, birthday parties. . . How does one deepen the relationships when she is too sick to participate in lunches and get togethers?
My son is demanding this morning. I explain to him mommy is moody because I didn’t get to go to my friend’s party. My husband gets up. He says he will take Joshua to karate. He even says he will take him to Legoland later for the “Brick-or-treat” event. He doesn’t remember I had plans. He doesn’t know I am grieving. I am too sore to go back to bed. Too sad to do anything else.
And I am lonely, because no one knows I am grieving. No one realizes mommy had something today that she was really looking forward to. That she sacrificed. That she was forced to surrender. That she is sick of being sick. That the tears are right under the surface waiting to break through.
The guys get ready to leave. My husband says goodbye at the door. “I really . . . I’m really disappointed I didn’t get to go this morning,” I blurt out. For some reason I need him to know I am sad.
“Oh, that’s right!” he says coming back in. “Did you just not feel you slept enough?”
“I didn’t sleep, my body is flaring, I couldn’t drive,” I say, the tears form on my lashes. What I want to say is, “I gave up my joy so you could do your sleep test. Every time I have plans something gets in the way!”
But he gives up plenty for me. . . all the time. And I don’t always even know. And I was the one who insisted he do the sleep test. Long term, it could help us both sleep better. And even if he hadn’t been doing it my body still could have easily turned against me like it has done thousands of mornings in these 18 years of disease.
“What time did it start?” he asks, likely wondering if there was any way he could take me.
“A half hour ago.”
I see his expression of Oh. “You aren’t mad at me are you?” he asks.
“No, you had to do that last night. I have to sleep Sunday night, there weren’t enough nights.”
“I’m sorry,” he says and kisses me goodbye.
The tears come, my son is waiting and watching. My husband knows I need a hug. He hesitates.
“Go,” I say, “Just go, I’m fine, go. . .”
“I love you,” he says. My son has to get to class. He goes.
And I write.
I can write. Or I can cry. . .
Actually, I can write while I cry. Feel it, release it, surrender it. Sometimes I deplore the emotions the illness brings to light. Pity, dependency, neediness, validation. I don’t want to need these things.
I have to choose whether this sadness will suffocate me or simply be a pale blemish on life.
Joy must come through the passageway of grief, but I will not be engulfed by it, even if my disease tries to botch my plans. I will find joy. Somehow. Somewhere.
I will choose defiant joy.
Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.