Roller Coaster-The Week Mercy Showed Up: An RA Story

Photo: Falko Tetzlaff

Roller Coaster Staircase – “Tiger and Turtle Magic Mountain” – Duisburg Germany,  by artists Meike Mutter and Ulrich Genth

A roller coaster design at first glance, the metal sculpture is a staircase fashioned into twists and turns. On some portions of the artwork, the curves and climbs turn into portions physically unusable. One would need magnetic or anti-gravity shoes to complete the entire walk. Those portions are blocked to pedestrians. If I ever visit Duisburg Germany – I would walk it.

Tuesday, I awoke to my usual routine of stretching and pain assessment. It had been two weeks since I started the mexotrethate and Xeljanz, and I remained at a pain scale of 7 to 8, most days. This morning, the pain was around a 5! I was hopeful – cautiously hopeful. As the hours progressed, my optimism grew – it had been months since I felt any kind of relief. Each previous day, my voice, my face, my demeanor indicated the pain was on the threshold of too much to bear. Tuesday, I felt better.

Wednesday morning, Greg, my husband, called from Indianapolis to check in on me before he headed to a meeting.
“Good morning, my dearest friend,” I said as I answered the phone.
“You must be having a good day,” he observed, “I can hear it in your voice.”
“I am. My pain level is about a 4 or 5 right now and I am very happy,” I responded in assurance what he heard and what I felt were matching.

I worked through the day feeling good and amazed that the evening came and went without my need to be in bed by 7:00 pm. Not only had the pain subsided, but the fatigue was negligible. Two days in a row, I could hardly contain my happiness. It was a reprieve, a time of relief, and a moment of mercy.

Thursday, day three of pain levels at 4 or 5, and my happiness was reaching a 10. Working another full day, I had plenty of energy to spare that evening and thought about how I should use it. You see, when one has chronic pain or a chronic illness, the amount of “good hours” must be measured carefully and used wisely. It was warm and sunny, the garden was all but spent, so I looked at the lawn. It needed cutting. My step-daughter usually fills the bill for extra cash, and I hadn’t cut the grass in two years. I got the notion I needed to try, at least the front yard and maybe the sides.

I donned my wrist brace, filled the gas tank, pumped music into my headphones, and pushed my way to the front yard. It took a couple of passes and a swift sweat to realize I had not engaged the self-propelled feature on the mower, which I quickly remedied. My challenge was to keep straight lines and maintain control. As I walked and listened to my Christian music, I felt free. Finishing the front and both sides, I was spent. I quickly showered and headed to bed. But before I did, I took a picture of the green carpet and sent it to Greg as verification. I did it, I really, really did.

Friday arrived and the pain was back up, not quite to 8 but a good 6-7. Had I overdone it? Surely. Was I sorry? Not in the slightest. By the time Saturday and now Sunday came, the pain was back. But oh, I know there will be days with less pain and they will come back soon. I must remember those barriers and keep from hitting them so hard.

Just like the roller coaster staircase sculpture, there are places in my life that are blocked off. The unattainable portions have a barrier to keep people from trying to go there. This is the lesson I had to learn about managing Rheumatoid Disease. There are limits on my normal life didn’t have. Recognizing these and keeping from going beyond is key.  In my (former) normal life, I would have cut the entire yard, trimmed with the edger, cleaned the house, and did grocery shopping – all in one day. Not so now – there are limits.

My level of activity has to be measured. There are hard stops that if not adhered to can cause days of inactivity and increased pain. Thursday, I tested it – the barrier to prevent me from doing the unattainable and to keep me safe. Sometimes, I have to physically kick the barrier to make sure it’s still there and it is – it always is.  I thank God for giving me the courage to kick the barrier, to see how far my body will allow me to go when I feel well, and the assurance that when I do go too far, I can walk back down and rest.

Although we all face barriers in life, God’s Mercy has none. No part of it is unattainable, even when we think it is. We set physical, human limitations on His Mercy, and it’s just not accurate. If God’s Mercy were the roller coaster sculpture, we would be able to walk the entire length upside-down, all around with nothing to help us through it but Jesus. It is attainable, wild and perfect, defies our limited thinking, and is boundless. This makes me feel truly free.

“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy, he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4 and into an inheritance that can never perish, spoil or fade.” 1 Peter 1:3-4 NIV