We were walking back to our car from the theater. Well from a Bonnie Raitt concert at the State Theater in downtown New Brunswick. New Brunswick is our city of choice. Both Dan and Faith hold degrees from Rutgers, the State University in the city of New Brunswick. I went to seminary there. Pete worked there. I did my field education at the First Presbyterian Church of New Brunswick and I did my chaplaincy at Robert Wood Johnson University Hospital in New Brunswick. Dan is a teacher at the charter school in New Brunswick. The city is the perfect size and has anything that you'd want from a city.
We were walking from the State Theater to the parking lot behind the Presbyterian Church after seeing a great concert with Bonnie Raitt. Pete has had a crush on Bonnie Raitt since he saw her perform when they were both around 18 years old. The concert was a birthday present for Pete from me. Midway through the concert, she invited Dr. John onto the stage. Pete was thrilled. He doesn't really show “thrilled” very well but I could tell he was.
I tend to like her newer stuff; I was particularly happy to hear the song “God was in the water that day.” I really like that tune with its haunting melody. She delivers the words on a low, slow drawl that seems to rest like steam over coolness of her demeanor.
Castin' out a line/ Castin' out a line to the shadows/ Castin' out a line but no one's biting
As we walked back to the car, I noticed that Pete was draggin his feet. “Pick up your feet,” I said. Nag, Nag, Nag. He seemed to be a little slower than usual. Pete ambles. He really belongs in South Carolina but the stork dropped him in central NJ. He speaks with a drawl. Maybe that's why he likes Bonnie Raitt. “Pick up your feet. Do you see that you're dragging your feet or foot? Are you ok?” He replied, “Yea, just a little tired I guess.” I'm not ready for him to be tired. I'm 18 years younger than Pete. I'm not ready to slow down. But here I am on Livingston Avenue, slowing down to see what's wrong with Pete and his dragging foot.
We turned the corner and saw our white Honda just as we left it. I was driving. Once we got settled, I asked the oddest thing of him. “Honey, try something for me. Lift your right knee. Now your left. And your right again.” By the third round, he was unable to lift his right leg. He looked at me, “Well, that's odd.” “Yeah,” I say as I turn the key and back out of the parking lot of the New Brunswick Presbyterian Church. We pull away from the theater district to our right and head home in silence. Castin' out a line, Castin' out a line to the shadows, Castin' out a line but no one's biting
We made an appointment to see our Internist, thinking that he must've pulled something or over-exerted a muscle in his back. Physical therapy was going to be the answer we were sure. I've been going to this doctor's office since I was a teenager. My mom still sees the managing physician. We started seeing her partner a few years back. She's Asian with a great smile and an even better laugh. She listens with her eyes. She too thought physical therapy would be a good first option and we were content, at least I thought we were. But then something other than my logical mind spoke up saying, “But I hear a change in his speech pattern too.” Full stop. “You do?” she asked. “Yes, I do. I think something else might be going on with him.” I said, not knowing where it was coming from. Was I making it up? Why? What data do I actually have to support a theory other than a pulled muscle?
I still don't have an answer to that question. Sometimes I think my subconscious must've felt a rift in the force. Something other than my mind was acting on our behalf. Or maybe it was simply over-reaching anxiety. Worry that is unfounded running away with itself. Fear casting out a line... that caught a script for an MRI and a referral to a neurologist.
Non-specific white matter. They found non-specific white matter in Pete's brain and spinal cord. We wanted our Internist to read the MRI to us first. We would go to a neurologist but wanted to hear something from her. We trusted her. She knew us. “I'm sorry. It reads like Multiple Sclerosis... Go see the neurologist. There is treatment. He will know what to do now.”
The first neurologist that we saw was unaware that he was making human contact. He spoke to us in medical terms that we did not know. He related to us as if we were sitting beside him during a lecture not as the people whose lives were being radically redirected. I began to cry and he seemed surprised by such a response. Not surprise that would result in compassion, surprise that looked confused by basic human behavior. He excused himself to give us some privacy. Great. Both of us responded to the diagnosis like we had been kicked in the chest. Pete had the wind knocked out of him and I sat in the corner and cried. Neither of our responses stopped anytime soon. We tried to function when the doctor returned by listening to his thoughts about treatment but we needed to get out of there as fast as we could. He wrote a script, we made a follow up appointment and we headed for the white Honda again with Pete's foot dragging behind.
Non-specific white matter. Multiple Sclerosi. Interferon medication. Chronic, progressive disease. Castin' out a line, Castin' out a line to the shadows, Castin' out a line but no one's biting.
Doctors and specialty pharmacies will be part of our lives. Medication will arrive at our back door in a cooler marked, “refrigerate upon arrival.” Medicine that creates false targets for Pete's body to attack so that it stops attacking itself. Castin' out a line, Castin' out a line to the shadows, Castin' out a line but no one's biting.
One test will lead to the need for another test that will reveal other problems in his arteries that will lead to the need for a cardiologist that will lead to more medication and more follow up visits. Always casting out a line. Always looking for the right diagnosis, the right treatment, the right next move. Sometimes it seems like we catch something, something bites and we feel relieved, like we're allowed to breathe again. And Pete walks home lighter in his step, but still dragging his foot.
People would send us articles and websites to read. Everyone else had more energy to attack Pete's diagnosis than either of us have ever had. I don't think we ever really recovered from the first kick in the chest. I could sense the frustration around us that doesn't understand why we moved so slowly through the first few years with MS. We simply didn't want to create a relationship with MS. And working on treatments and thinking about alternative medicine or diet was giving MS way more play time than either of us was willing to give it. Were we “putting our heads in the sand?” Maybe we could look at it that way. It didn't feel like that though. It felt like we were under siege by MS. It had us, with no cure, no way out. We weren't ready to figure out how to live peaceably with something that had taken us captive. It wasn't a peaceable relationship. And if there was a need for a peacemaker, we were not ready to take that high ground.
Instead I cried. All the time. Sometimes at the end of a work day, I would try to surf the internet for information about MS or treatment options. I was met each time with the suffocating reminder that MS was a torrential storm and we were stuck at sea in a fragile, human boat. Reading and critical thinking were not options. And with tears, I would cast out a line. But if God was in the water, God wasn't biting.
What is this blog about?
These are some of the reflections that I am fashioning into a memoir about coming to peace with my husband's diagnosis of multiple sclerosis.