If you are just joining me for this story, be sure to click over and read Part 1
MY HUSBAND HAS LYME DISEASE PART 2
We were six months into doctor appointments with no real progress. Finding no physiological damage in any of Jonathan’s organs, both his primary doctor and a specialist concluded Jonathan had IBS, a functional GI disorder. They told him it would last the rest of his life. He was experiencing a constant weakness which forced him to go to work late and take longer lunch breaks. I was driving him everywhere, buffering the amount of energy he’d have to expend in a day. The answers the doctors gave didn’t satisfy Jonathan and we started looking around for other options.
After all, when you hit a dead end, it’s natural to turn your car around and start looking for another road.
In June, we heard about a doctor out of Walker, MN who diagnosed via electrodermal screening and treated with homeopathic drops.. There, Jonathan was first told he had Lyme and multiple co-infections (germs that enter the body alongside Lyme). He took the drops and began feeling significant improvement. Then the roller coaster of symptoms began.
Jonathan worsened in late summer, around the same time I was tying up the loose ends of my limited photography work and beginning maternity leave. Eden Felicity was born (more on that later) and our winter was full of juggling Jonathan’s health and adjusting to life as a family of four.
During the winter months, we heard of a clinic in the Twin Cities specializing in integrative medicine. They had both a naturopath and a medical doctor in house, and both were Lyme literate. It seemed the best of both worlds, so we approached them for help in confirming Jonathan’s Lyme diagnosis and putting together a treatment. It was a well-reputed clinic. One of the doctors was the first person to diagnose a case of Lyme disease in Minnesota and was also a past president of the Minnesota Board of Internal Medicine. Jonathan had a borrelia (the Lyme bacteria) blood culture test that would take two months for results. In the meantime, he took a round of antibiotics for 10 days, had a short break, and then continued for 20 days at half dose. Both dosages were quite small but he felt awful while taking them. During the second round of meds, he had a severe GI episode that landed him in the emergency room. It was so intense and unfamiliar that Jonathan was actually concerned he was dying. The doctors on staff couldn’t find a thing wrong with him. Not seeing any other option, Jonathan stopped the meds and scheduled a follow-up phone visit with the doctor in the Twin Cities.
When the doctor reviewed the ER test results, he said he’d never seen anyone so sensitive to such a small dose of antibiotics before. To further confuse the matter, weeks later the borrelia blood culture test came back negative. Between the combination of Jonathan’s inability to take antibiotics and the negative Lyme test, the clinic said there wasn’t a clear path forward and there was little more they could do for him.
In the spring of 2012, we drove to Wisconsin to see another natural doctor who was known for treating Lyme. It was at this clinic that Jonathan first received a treatment made out of the herbs recommended by herbalist Stephen Buhner for Lyme and co-infections: Japanese knotweed, cat’s claw, boneset, teasel and many others. It was a great find. Fifteen minutes after taking every dose, Jonathan would feel a warm tingling throughout his entire body. Just a few weeks into treatment, he was having more good days than he’d had in a long time. We had a fantastic July and took a trip to visit extended family in northern Minnesota. Jonathan felt so well he drove us home. This only lasted a few weeks before he got very sick again.
The roller coaster of symptoms was to become quite familiar in years ahead. It was partly due to treatment, but primarily due to Jonathan’s lowered immune function. Lyme disease robs the body of its ability to fight common infections. Every opportunistic pathogen that might register as a mild cold or flu for you and me would take full advantage of Jonathan, going straight to the weakest parts of his body, his GI tract and nervous system. We didn’t realize this at first and chalked up all of his symptoms to whatever medicine he was currently taken. This constantly threw us off track because we thought he was simply reacting poorly to the treatments, which we would then stop.
In August of 2012, we had completed three attempts with alternative doctors. We had experienced some victories and gained a lot of information. Jonathan’s good days gave us hope that he was on the mend. Surely this was a fluke sickness – it would probably leave as mysteriously as it came, right? That’s how I was processing it, but for Jonathan’s part, reality was starting to set in. He was vcry sick and not improving.
I think it especially hit him the weekend my younger brother got married. Over the weekend, I was busy photographing and participating in all the events while Jonathan spent the entire weekend in bed. He had a lot of time to think about our situation, and on Sunday afternoon, he sat me down and told me that we needed to have a talk.
“I’m not getting better,” he told me, “and I’m not going to be able to work much longer. We need to sell our house while we can…maybe move to Moorhead to be closer to your family.”
“Are you just depressed?” I asked. I was unsure how to process this. “No,” he said. “I know I’m not making any progress and we are going to need help.”
I think I was a little numb when we called my family together for a meeting. Jonathan looked them all straight in the eye and said, “I’m asking you to help take care of my wife and kids because I can’t do it anymore.”
Things moved fast after that. The “forever home” that we had designed and built together was listed and sold in four days to a lady who bought it with cash. Scrambling, we found an apartment building a half mile from my parents’ house. A ground floor unit was open since the previous tenants had abandoned it, not being able to keep up with rent. The unit was still full of their stuff and needed new carpet and a major cleaning. Since the building was fairly new and the location was perfect, we signed the lease contingent on cleaning and repairs. Within just a few weeks, we were moved in.
(Last picture in front of our Detroit Lakes house)
Throughout this year and a half of doctoring attempts, our balance as a couple began to shift. Jonathan’s physical dependability was increasingly sporadic. He would do things when he felt capable, the level of which could change from day to day. He needed to rest often. He wasn’t driving and needed to eat large amounts of food, sometimes as often as every two to three hours during the day. Temperature changes affected him and his body felt constantly full of tension. Sometimes he could handle visits from friends, other times not. Because of his energy levels, he couldn’t take care of the garden and yard like usual. Also, we stopped going out to restaurants for fun or taking weekend trips to nearby destinations. Our lifestyle quickly began to change.
As we made plans for the birth of our second baby, Jonathan told me he wouldn’t be able to be my support during the birth. His already deeply taxed nervous system required him staying close to home, a food source and a bed at least for part of the day. This was the first time his physical undependability impacted a big life moment. We both tried to roll with it as best we could. My mom came to the hospital instead and was an amazing help. We scheduled an induction for predictability and Jonathan was able to join me for part of my labor mid-day. During the most stressful part of active labor he rested in the waiting room and after Eden Felicity made her appearance he joined me to meet our new baby. As you can imagine, the situation was unusual and slightly challenging for both of us but we made the best of it. I stayed in the hospital alone that night. Jonathan wanted to do what he could to help with our new baby, so we decided I would go home early the next day. The second night, Jonathan was able to care for Eden so I could rest. It was easier for him to help at home where he could lie down or eat when he needed to.
From Jonathan’s perspective, this was a very scary time. Not being able to work or take care of your family is a hard thing to face. He was losing some ability to sleep and would spend hours awake at night. There were constant doctor visits and suggestions of things to try. It was hurtful to be told by medical doctors that he was perfectly healthy. It was even hinted at or suggested that this was all in his mind, that he was simply working too hard or was over-stressed. Specialists wanted to keep him on the hamster wheel of various diets and more tests that, frankly, Jonathan knew would lead nowhere. He felt sick, confused, doubted by many and uncertain why this was all happening.
As Jonathan’s ability to work decreased, we quickly realized I needed to bring in more income. I was working as a freelance photographer very part time, but that summer, we hired a nanny for the girls so I could start working more productively. Our balance was shifting, our family was growing and I had a lot of learning to do.
In general, Jonathan and I have always been happy together, but our first few years of marriage held irritations over various, petty things. They were the kinds of irritations that simmer underneath the surface and get pulled out for the blame game during any time of difficulty. I don’t know how to explain it except to say that, about three years in and without warning, the simmer underneath was wiped clean. Neither of us had changed, but our dynamic was totally different. We had an underlying acceptance for each other, a greater capacity to absorb the failures of the other and remain unmoved. Some might say it was merely our growth as a couple, but I have experienced enough of God’s power to recognize where this kind of acceptance came from. I also believe that it was given to us for a purpose.
I said in my introduction that I would talk about faith. Because I believe in prayer and in God’s power to speak to our spirits, I will share a story that pertains to this.
One small step toward this change in our marriage dynamic was a very simple moment that impacted me deeply. I remember being mad about something Jonathan had said or done. Sitting down in my living room chair, I prayed. For whatever reason, God gives me pictures in my mind that help me understand things. In this moment on my living room chair, a picture came into my mind of Jonathan being literally surrounded and protected from all directions by Jesus. He was in the center of a hard, protective shell. I saw God’s protection over my husband and felt that God would even protect Jonathan from me. In the place of criticism, I keenly felt my husband’s value. When you really see something like that, it changes you.
Jonathan also gained a different perspective on some of my flaws, resulting in greater acceptance and patience with me. It was good this change in our marriage happened when it did. Sickness puts a strain on any marriage, and our shifting roles left plenty of room for resentment and anger. Years of sickness have made for a dizzying roller coaster ride, yet God’s gift of acceptance holds us tight to this day. Perhaps someday we’ll feel this blessing lift and we’ll need to work harder to fight for our marriage. In the meantime, we are thankful and want to acknowledge where our love came from.
When we lived in Detroit Lakes, I had a friendship with an older woman named Anna. The first time I visited her she was in her upper 80’s and lived in a tired house on a corner lot. It had faded green wooden siding and was surrounded by unkempt shrubs. With great ambitions for my future and an eager eye for beauty and prosperity, I admit that I looked at her little home with some disdain. It wasn’t the type of place I wanted to have to show for myself at the end of my life.
Jonathan and I had made some financial progress by our mid-twenties. Now, being forced to quit his job and sell the house we built together was a big blow. There were many hopes and dreams built high with those walls. We had a front porch with white railings, a garden for fresh vegetables, rhubarb plants around the side of our house and a wooden swing set for the kids. Plenty of airy bedrooms and windows with French panes that looked out to the native Norway pine trees. Winter was my favorite view out those windows; the snow on the pines was always so pretty. I even had room for a photo studio in my basement.
Having a beautiful home was nice, and it was hard to give it up alongside of my husband’s health situation that I had no control over. Talk about losing a sense of stability. I cried a lot of tears and had a hard look at the truth: Health is fragile and boy, can money fly away. This is reality. As a woman, selling my home was also a big hit to my identity and pride. Having nice things makes you feel and look successful, and I liked how I felt in that house.
It was on my same living room chair one day that God gave me a picture of a horse track. Many eager horses were lined up to compete, the whole of their energy focused on getting across the finish line a nose ahead of the next guy. It was like God asked me, “Abby, do you want live on the race track and make your whole life about achieving material things just a little faster than the next guy?”
When He put it that way, it sounded rather foolish. “No, I don’t!” I responded. And then it was like God whispered into me, “I want you to be a horse in the open field.”
“Why?” I asked.
“Because then you can actually go somewhere.”
I was friends with Anna for the last three and a half years of her life. Do you know what a gift that was? In that time, she went from living independently with her husband to losing her husband, to moving into assisted living, to receiving a cancer diagnosis, to moving into a nursing home and then dying. The stories she told me from her life were not of grand material achievement but of deep impact in the lives of people God gave her to touch. She told me stories of deep prayer and connection with Jesus. I watched as she lost everything and found she still had so much more than me. This ordinary woman with diabetes and cancer, no children, no money (she had given most of it away) and absolutely zero status in this world had been places with Jesus that I could only dream of.
Maybe loss was the only way for it to begin — the house, my husband’s health, the sense of security….all of it. My whole way of thinking is changing and so is what I value. Things that were ugly are becoming beautiful, and shiny things are becoming cheap. Truth is surprisingly refreshing and pain can revitalize the numb, neglected soul. Getting kicked out of the horse race helped me sense God’s love in a way I hadn’t before, and I now know with certainty that He’s taking me somewhere.