Yesterday was one of the worst days I have had in a very long time. One of the most difficult aspects of living with disease is the unpredictability it brings. I have said this before, but it is worth repeating. I can wake up in the morning feeling okay. A couple hours later I may be in so much pain that walking is difficult. There is another difficult aspect, though, of living with a disease like mine. Yesterday, that manifested itself in a big way.
There is a song on Christian radio right now that I replay over and over in my head. It is sung by Danny Gokey who was an American Idol contestant several seasons ago. He finished in third place and has become popular in Christian music. The song is titled Tell Your Heart to Beat Again. Here are some of the words:
“You’re shattered, like you’ve never been before,
The life you knew, in a thousand pieces on the floor.
Words fall short in times like these when this world drives you to your knees,
You think you’re never gonna get back to the you that used to be.
Tell your heart to beat again, close your eyes and breathe it in.
Let the shadows fall away, step into the light of grace.
Yesterday’s a closing door, you don’t live there anymore.
Say goodbye to where you’ve been and tell your heart to beat again.”
It is the fourth line that struck me yesterday as I heard the song play. I miss the me I used to be. I miss the athletic abilities I used to have–the stamina to finish a day’s work and know that the next day that energy would be replenished so that I could wake up and do it all over again. I miss the ability to finish an entire book in one day. I used to ignore household tasks in order to spend time reading a book that had drawn me into its storyline. Now, I have the time to read but find my eyes no longer cooperate to get very far let alone finish a novel in one sitting. I miss the creativity I once possessed. I enjoyed baking and creating delicious dishes in my kitchen. Now, standing on my feet too long causes excruciating pain.
This week I visited with a friend who understands what this disease can do to a person. His daughter-in-law passed away in her early forties from MS. She left behind a husband and three children. Her family watched her body deteriorate to the point of it being completely non-functional. As we talked about the cruel nature of this disease, my friend, who is also a pastor, remarked that one of its cruelest components is that the mind stays sharp while the body wastes away. He said he often wonders what was going through the mind of his daughter-in-law as she lay in a nursing home, unable to see, hear, talk, or do anything for herself at all. It was good to talk to him and not feel like I was complaining.
Yesterday, as I was driving home from a friend’s house, I thought about my conversation earlier in the week. I thought about the person I used to be. I thought about what this disease has done to me physically and emotionally. I thought about what I’ve let it do to me spiritually. The more I thought about it, the more agitated I became. I started to go down that path of believing others would be better off if I were not part of their lives. No one would have to listen to me complain. My husband wouldn’t need to worry about me when he needs to be gone for work. He wouldn’t have to deal with medical bills. My kids wouldn’t have to watch their mom deteriorate and not be able to do the things I have always done. By the time I reached home, I was deep in the muck of not wanting to go on. I don’t like the person I have become and I was sure–still am to a degree–that others don’t like that person either. I didn’t know what to do. I knew if I called anyone and told them what was going through my head, I risked them panicking and calling 911. I didn’t want to risk that. I went on Facebook, pulled up my daughter’s page, and started looking at all the pictures she has on there of my beautiful grandson. I thought about what she would have to tell him about his Grammy and I knew I needed to hang on. I cried–sobbed actually–to the point that I hoped the neighbors weren’t home. (Shared walls can be a disadvantage in many cases) I finally remembered my conversation with my friend. Before I left his office, he told me if I ever needed special prayer, just shoot him an email. I opened my laptop and did just that. I also emailed a friend in another state who I knew wouldn’t panic. Then, something happened that was wonderful and excruciating at the same time.
My text message notification went off on my phone. I looked and it was the associate pastor of our church. He was just checking in to see how I was feeling. I debated not answering him or even lying. Instead, I told him his timing was amazing, or maybe not so amazing depending on how honest I was. I simply then said I wasn’t doing very well. We texted back and forth for a few minutes. He asked me if I wanted him to tell my son who is on staff with him at church. I said no, that I didn’t want him to know how bad I was. He understood and asked me what I needed. I told him I really needed to know people were praying. He said he would let the other pastors know and they would pray right then. I finally relented and asked him to please let my son know that I was having a rough day. I was in so much physical and emotional pain that I could barely talk when he called. It didn’t take long for me to see my son walk up to the door. I mustered all the strength I had to stop the tears. I didn’t want my son to see me that way. You see, a mom is supposed to be the caretaker of her kids…not the other way around. I didn’t want my son to see me so weak. I missed the me I used to be…the mom who always had it together, the mom who could handle a schedule that seemed impossible to execute, the mom who cleaned, cooked, taught, coached, played and still managed to have energy leftover for a quick game before bed. That’s the mom I want my son, and all my kids, to remember. Inside, I was so thankful he came even though it meant I had to fight to stop the tears.
Last night I was half watching a television show my husband had recorded. A line from a character caught my attention. He said, “I’ve been fighting myself, trying to be a new version of the old me. Maybe I need to focus on being the me I am now.” I thought about the line from Danny Gokey’s song…”You think you’re never gonna get back to the you that used to be.” I realized that for me, that is true. As my pastor friend from earlier in the week said, “MS doesn’t get better. It gets worse. You can plateau for a while. Enjoy those moments because the nature of the disease is that it will come back.” I need to learn to be a new version of the new me. Maybe that means not trying to hide from my kids how I am really feeling. Maybe that means letting others help even though that goes against everything in me. I don’t know what it means to be honest. I just know that yesterday, I needed to know that others were praying for me at a time when praying for myself was beyond difficult. I believe God’s timing was amazing yesterday. My faith is not strong right now. I often wonder if God even is there. Yesterday, I saw Him show up when I needed Him desperately. No, he didn’t take away the pain. The disease still wracks my body. What He did do, though, was give me a little peace. As our associate pastor was texting me, and eventually talking to me on the phone, I felt a peace that just an hour before was not there. In fact, in that hour before, I struggled with the idea of even continuing to live.
I still miss the me I used to be. I can only hope that somehow, God shows me who I am supposed to be now. I hope He shows me how to live with this disease and how to handle it better than I have been. I hate the person I’ve become. Only God can change that.