I was 27 years old when my fiancé was diagnosed with cancer.
I had a ring on my finger and a veil on hold at the bridal shop. I was googley-eyed and in love with the long lashed Chicago boy who spun me around a dance floor.
When the diagnosis came, I put on my work boots like this was all part of the job of being a wife. When you love someone you take care of them. This was the ultimate marriage bootcamp, I told myself.
But no one told me the truth. No one tells caregivers what really happens when someone you love is sick. When your partner can’t hold up their end of the deal. No one tells you what happens to your beautiful life plan.
There is no way this is God’s plan. I think God is just as mad as I am. Here he is creating the most perfect, never before seen human race and he later learns a few have glitches. I imagine him banging his head trying to fix it. Trying to find the right formula. My God is like an APPLE genius, rolling out an update to fix the problem. I feel like I’m waiting for the message that I can now download and all of this will be fixed.
No one tells the caregiver, it will never be that easy.
You are immediately thrown into the medical field and you need to start learning and taking notes fast. Every medication name, every milligram, every chemotherapy, you’ll be tested later and you need to be able to answer and double check the people who really do know what they’re doing. There is so much responsibility as you sign papers as the caregiver. The person who makes the decisions when your husband can’t.
No one tells you how hard it will be to make friends.
I was at the pool last week with the baby and I met a nice mom about my age with her little boy. She asked me, “What do you do?” I simply answered, “I stay home with the baby”. She rolled her eyes, “You’re so lucky!”
I am so lucky. I am lucky to be home right now. I didn’t dare get into the facts about why I’m home. No one wants to bring that kind of drama into their life, so I simply smiled and nodded back.
No one will tell you that you will look into the mirror and not always recognize the person in front of you. There’s no amount of concealer that can hide the lines forming around your eyes. Marks left from sleepless nights, endless tears and worry.
There is no way anyone could have told me how heavy my heart would feel, so full of guilt. Am I doing enough to make him comfortable? Am I selfish for leaving the house? Do I hug him? Does he need me? I worry I’m not doing a very good job of taking care of him. All he wants to eat is macaroni and cheese yet I seem to screw that up. I saw it in the look on his face as I served him a soupy version of the Kraft delight this week. I’m not cut out for this.
I understood that cancer meant I could lose him. In so many ways, I’m prepared for it. But no one told me I’d be grieving while he’s still lying right beside me. I grieve for the person I fell in love with. I long for beers on the beach and dancing in the kitchen. I miss laughing during the day and lust filled nights. I mourn for the loss of the life we had planned. I feel the sharp pain in my heart for all that is already gone.
No one tells the caregiver how strong you have to be all of the time. If you fall apart, your partner will be long gone. You have to keep smiling.
I started counseling this week as my effort to pro-actively make sure I don’t lose my mind. She looked at me and said, “I can’t believe you’re sitting here and smiling at me and all of this is going on.”
I answered, “Being sad is so much harder than being happy. I just try to go the easy route.”
“What do you want out of this counseling? What is your goal here?” She asked.
“I don’t want to put the blankets over my head and never come out. I don’t want to go on a shooting spree. If you could keep me somewhere between those two. I’ll survive this.”