Note: Over the next few weeks and months I am going to publish posts I wrote the last two years. Blog posts I didn’t actually share. Sometimes it was because it felt too raw, other times I didn’t want to deal with the critics that were sure they knew better than us how to walk our road. But, it’s part of our life, it’s raw and it’s real. I pray you are encouraged and if nothing else it gives you a glimpse into another’s shoes. May we always seek to encourage and to fight the idea we might know how to better walk in another’s shoes. We never know until we have to actually wear the shoes.
Over the last two months, I have been processing the direction our family’s path has taken. I have fought looking at it. It has been too painful and surely it was not as bad as it felt. Mark wasn’t that sick. He would bounce back and start running. Except he didn’t and he probably won’t for a long time. His body is sick, there is not a place in his body the Lyme has not taken over. His muscles barely work, his joints are often inflamed, he slurs his words, forgets entire sentences and showering is taxing. It takes all of his energy to be patient, kind, and self-controlled.
My cousin and I try to walk every Monday and Wednesday together. On one of our walks, I was venting about trying to figure out why life was so hard. She said, Robin, I don’t think you are giving your situation enough credit. If you were to replace the word Lyme with Cancer, would it change the way you saw the situation.
Absolutely it would change my perspective. It would not make it any less hard, but I might be more patient with myself and Mark. Cancer is more socially acceptable. I slowly allowed Sarah’s words to puncture my brain, then my heart, until they began to process together. There was and is so much anger. I am furious our life has turned out the way it has without my permission. I hate how sin has destroyed the world. For the first time in ever, I am screaming come save us, Lord Jesus. Some would say that is a beautiful moment in and of itself. It doesn’t feel beautiful. It feels ugly and hard.
Around the same time as Sarah gave me food for thought I hit a wall. I was tired mentally, emotionally and physically. I was literally working twenty-four seven. Something had to give, but what? I loved every aspect of my life. I loved my career and the growth we were experiencing for RCV (Russell’s Creative Ventures. Yet, with the antibiotics attacking Mark’s body he was becoming sicker by the day.
I was also frustrated because I kept hearing business and life coaches in my life saying, do what you love. While I love social media managing, I love being a stay at home mom more. I love homeschooling our kids. I wake up loving it and I fall asleep loving it. I would hear do what you love and my brain would scream back, No, I do NOT get to do what I love. I have to go to work, my husband is sick, and I have to manage our life by myself. The more I heard it, the angrier I became. Then, one day, I exploded. I was done with life, my family, work, everything. I felt like I no longer had a choice. They had all been taken away from me. What did I have left? I sent a text to my mom pouring my heart out to her. She sent me a text back and said dad and I are praying right now. Literally, as they were praying I fell asleep. It was a miracle because I was sure I would be up all night struggling in emotional misery.
Joy did not come in the morning, but uncertain peace did. It was enough. As I was drinking my morning coffee my brain decided my course of action. Being a stay at home mom and homeschooling our kids was still my biggest love, my core and I was going to fight for it. I decided to let go of our two biggest social media clients and work full time at the hotel. I needed the ability to go to work and leave work at work.
I am continuing to write on the blog. I will always need to write and process the world around me. It brings me true joy and I love being able to help people connect to the protects and people they need to propel their business or make their life more joyful.
Life does not look anything like I thought it would. There are still moments when leaves need to be raked. I come home from a long day at the hotel and supper still needs to be made. Mark tries to help around the house, but most days it’s a struggle to stay standing without falling over. He does as little driving as possible because two of his antibiotics make him dizzy and drowsy, bad combinations for being behind the wheel.
The other part of having a spouse with a chronic illness is how much to share. My mind has continually said surely it’s not that bad. He’ll get better, he’s making it up and a host of other escape thoughts my brain has come up with. It is that bad. We have bad days and worse days. A good day is when he is doing a smidge better and he is able to have love, joy, peace, and patience. These days are almost harder than the bad days. It gives us a glimmer of hope he is better and we have seen light at the end of the tunnel. The good days turn into endless bad days as he pays the price for extra tasks or the fun he had.
I withdrew this summer from friends and church. I was sitting in my ashes and I didn’t feel like I had the emotional energy to explain to people why life was bad or worse. I didn’t want to see pity or doubt in people’s eyes. Life was hard enough without absorbing what others thought of us. Even though I tried not to care.
There is a sweet woman at our church. She often sends us cards of thinking of you and love. Every single time I see her it touches my heart. She does not expect our situation to get better or for us to be better. She knows our life is hard and she is simply content to sit in our ashes with us. She is content to allow me to hurt, to not be ok and yet be ok because I know God is still good. We celebrate God’s goodness and weep at how unfair and hard life is.
I do still believe God is good. I still believe God will save us and even if he doesn’t we will still say blessed be the name of the Lord. I cling tightly to the apostle Paul’s example to give thanks in all situations, praying and singing when life hurts the most. God is still good and he will always be faithful.
Yet, in the moments when we may lose our house, raking the leaves has to be done, something needs to be taken to the landfill or other tasks Mark would normally help me with. I am left on my own to tackle. We can ask for help and we do, more often than I would like to. In these moments life feels too big and impossible. My flesh cries out for relief and swears in anger. The tears and swear words often come the most when the task is something only I can do.
I have cried off an on as I have written this blog post. It has been six months in the making. I have gone through the grieving process several times and I am sure I am not done with it. It’s hard and it hurts. I want to suck it up. Plaster a smile on my normal Pollyanna personality and keep going. Lately, I can’t find Pollyanna, my anger runs deep and I am left with nothing but anger. I miss me. I miss being joyful in all things.