Two years ago Mark was diagnosed with Lyme Disease. Five years before his diagnosis we had begun to see the worst of his symptoms flare up, although, we did not know he had a chronic illness. We chalked it up to the fact that we are all decaying and dying; he would have to live with it. When his diagnosis finally came, it took me about a year to accept Mark’s limitations. I didn’t want to, because it meant I would have to shoulder the bulk of our lives for an indefinite amount of time. I wanted a short time frame; I wanted a “poof” healing treatment. I saw the life I had always dreamed of slip through the cracks. No one could save me; no one could remove me from living in hell on earth. I could not let Mark off the hook and allow him to be sick.
My cousin Sarah, who is also my best friend, had a serious conversation with me. She could see and hear what I could not. On one of our walks she said, “Robin, if Mark had cancer would you let him off the hook?” I said, “Probably.” She said, “Robin, Mark is as sick as if he had cancer.” I knew it was true. My heart and mind knew it was true. It was time to face reality.
I did begin to ponder it, slowly. I began to get angry, and bitterness started to set in. I saw the world buying a second car, a camper, vacations and so much of the life I wanted. Meanwhile, I am working my ass off, some months barely getting by, and watching my husband deteriorate before my eyes.
Family and friends help where and when they can. It is appreciated, and yet, life goes on. Except for us, it often stands still. Our reality is, when the day is done, tasks still somehow need to be done. Accomplishing everyday jobs are one of the hardest parts of having a chronically ill spouse. The little tasks need to be done every day. When it snows eight inches in a matter of an hour, I’ve worked ten hours, and the driveway still needs to be shoveled to be able to put the suburban in the garage. Deep cleaning around the house often goes undone, just because there is no time or energy. Meal planning, grocery shopping, and making family dinners is a pain in the ass because Mark’s diet is complicated and time-consuming. He does well on a diet, we see healing and improvement, but it’s taxing and takes time.
Lyme has taken Mark’s arm muscles, and he has severe joint pain, along with severe fatigue. These symptoms make cutting sweet potatoes, spaghetti squash or other such items impossible if I am not around to do it for him. Opening medicine bottles, holding a wooden spoon, and even simple tasks like turning on the kitchen faucet can be painful. It is out of the question for him to mow the lawn, vacuum, or other such tasks. He does it, and I try not to say anything, but I know we will all suffer the next few days if he does.
Our kids are amazing! As part of their routine, they each have a cleaning zone in our house. They have all stepped up and taken on more responsibility. This allows me to have time to play with them, make meals, and have time for more significant tasks they cannot do yet. They feel the financial stress of our situation, express to us their hurt and frustration over daddy not being able to play with them.
The other day while I was working at the hotel, I was talking with a coworker about something. Without thinking, I said, “well if my husband wasn’t sick and dying.” She stopped and looked at me funny. It dawned on me she was shocked at what I had said. It has taken me two years to be able to say that, and I pray he gets better; I pray he goes into remission. However, like cancer, we know that doesn’t always happen. It could be a long, hard, painful road.
Honestly, the possibility of Mark dying is painful. I would miss him like crazy. My heart would ache and hurt in a way I cannot imagine. However, honestly, it is what our life means without Mark that makes it even harder. It’s me not able to efficiently run to the grocery store; working a full-time job, homeschooling our kiddos, watching our kids grow up without him, tackling everyday tasks without his input and wisdom.
Both Mark and I rejoice Jesus has taken our fear of death. He conquered it when he defeated Satan and brought back the keys to eternal death. We know we will both see each other again someday in heaven. Death is the beginning of living eternity with our heavenly father. Earth is only the rental property we cannot keep. It’s the chores while he’s sick and the jobs that would need to be done after he died that would be the hardest.
Some days I confidently say the last paragraph without flinching. Then, other days, it is met with tears and swearing. My prayer in what I am experiencing in life is that it would make me more compassionate. Our situation has opened my eyes to the tasks I can do for others. Simple tasks such as asking a mom at a restaurant if I can refill her soda for her, carry her tray to her table, return a shopping cart to the store or cart corral. Make an extra pan of lasagna or make an extra plate of cookies to bring to our neighbor. When we are walking a hard road we need God to show up through each other.
Every day we put one foot in front of the other, one baby step at a time.