Seize the moments of happiness, love and be loved. That is the only reality in the world, all else is folly. It is the one thing we are interested in here. –Leo Tolstoy
I could start this blog with how difficult things have been. But, I won’t.
I have decided, for this moment, that I will not speak of how bad things are, but what good I am still finding. Right now, my body is out of control. But, I will take control of what I can. And that is my happiness.
My grandmother is in the hospital. She is dear to my heart, not just because she is my grandmother, but because we share so much. My mother tells me how much I remind her of my grandmother, and when I tell friends stories of her spunkiness, they laugh and say “wow, future Laura.” Grandma and I not only share spunkiness, but we share one of my illnesses as well. Therefore when Grandma is hurting, it hits a little harder-because I feel her pain. Literally.
Today I was feeling sorry for myself. It has been a few weeks since I have been able to do much of anything, and I have found myself over the past few days going into my bedroom and crying on my bed. I don’t want anyone to see me. I don’t want anyone to comfort me. I want to be alone, in this space, and weep for everything I have lost. I weep like a small child over my frustrations, I say to myself over and over again “you are more than this, you were supposed to be so much more than this.” I obsess, and obsess, and obsess until there is a new word for how much I am obsessing.
I hear my mom on the phone with my grandma. “Of course you will get better. Why don’t you think so? Yes, yes you are getting better I can tell.”
My poor mother was just saying these words to me about 15 minutes ago, and now she is saying them to my grandmother. Same illness. Same pain. The only difference is, she is 80 and I am 25.
My skin feels hot as my emotions flood to my face. I feel helpless. I should be there right now. I should be there with my Grandma. And I should be able to help my mom. And I should be able to do more than this. I should be able to get dressed, take a shower, get in my car and drive down there to see my Grandma.
Should. Should. Should.
What if she won’t be here for the holidays. What if I’m missing this time with her. DAMN THIS ILLNESS JUST LET ME LIVE! What if she doesn’t get to see me graduate and marry. What if I don’t even get to do those things at all?
What if? What if?
My mom leaves to see my grandma, and I once again retreat to my room. I pace, then sit. I touch my arm. Pinch my skin. It doesn’t even feel like my skin anymore. I look at myself in the mirror, and touch my face. I don’t recognize this face anymore. It is gaunt, discolored, tired. What will you ever do? Who will you ever be? Useless. I feel useless.
And that is just something I cannot be. Today I cannot do much of anything. But there must be something I can do. Call her, Laura. At least call her. I’m afraid that if I call her I will break down in tears and make her feel worse. How could I even make her feel better when I am so miserable myself?
I sit with the phone in my hand for some time, trying to prepare myself. The phone rings, my grandma picks up and in an almost unrecognizable, raspy voice says, “Hello?”
“Hi Gram, it’s –“
“Hi sweetheart!” Her voice completely changes. Even with several girls as grandchildren she can pick my voice out. Even our moms will mistake Samantha (my cousin) and I on the phone.
“Oh it’s my granddaughter!” I hear her exclaim to the nurse. Her voice completely changed. I smile on the other end of the phone. We talk for a while. She of course asks me a thousand times how I am feeling, if I am eating. I ask her the same.
“You understand me,” she says, “we understand each other.”
And now I get it. I didn’t need to go anywhere today to be “useful”. I didn’t even need to get out of bed today if I couldn’t. Because I did what some (especially those in the chronically ill world) might consider one of the most important things someone could do with their day-I spoke to someone who genuinely knew I understood them. And only because we share this illness could grandma feel completely understood.
This illness is brutal, but I share it with a woman who also shares my spunkiness, my sensitivity, and my stubbornness (for better or worse). And that, on this rainy afternoon, makes it worth it.
Worth it. Worth it. Worth it.