This is a hard time to be alive but geez, the reality that I still am…alive, is pretty cool when I stop and think about it. I turned 60 this year and that’s saying something. I live with Mixed Connective Tissue Disease. I have also had some really crazy health scares over the decades. I have loved and hated western medicine. I have loved and hated eastern medicine. I have loved life. I have hated life. I need to write about the disease, the healing, the process and all of it.
Autoimmune disease was suspected in my body when I was 16 and began to deal with pain in my knees and elbows for no apparent reason. A visit to the doctor, a referral to a specialist and monthly appointments for a year to rule out his suspicion of Systemic Lupus made life a bit precarious for a while. The symptoms would wax and wane and I was often sick with something but by the summer of my sophomore year I felt good enough to participate in a summer mission experience in Estes Park, Colorado. The time I spent in the mountains with fresh air, good food, plenty of exercise and a whole new group of friends seemed to suit me perfectly. When I returned home and to my doctor, I was given the good news that whatever I had was in remission and I was free to return in a year if I needed to. As a young, zealous Evangelical Christian, I was sure that God had healed me and this nastiness was behind me.
I continued to be seriously involved in Christian ministry. It was my thing. I finished high school and went off to college only so that I could get a 4 year degree and go on staff with a mission agency I admired. I gave myself to Evangelical faith with abandon fully believing that God had an abundant plan for my life. I didn’t ever worry about or even think too much about an autoimmune disease of any kind. In 1982 Dean and I got engaged and planned to go on a mission to Uganda, East Africa. In order to go we had to submit to several required vaccinations. As we started that process, he would get a shot and barely notice it. I would get a shot and be down for a day or two. The Yellow Fever vaccine really threw me under the bus. We were raising money for the trip and all of the sudden the well dried up.
We had just enough funds for one of us to go and I knew that it should be Dean. I am not sure if my intuition told me that I would not do well there or if it was just an acknowledgement of the fact that I was planning a wedding at the same time and it just seemed like a good idea for Dean to go without me. Either way, it was such a good decision. Dean came home having had a bout of malaria that almost took his life and most certainly would have mine. He had been taking chloroquine to keep it away but a variant of drug resistant malaria found him and he was very, very ill.
The early eighties were days without instant communication and unreliable phone service so we didn’t even know he was sick until he came home and told us his harrowing story. He’d lost a good 25lbs and when he walked out of the gate at the airport (back in the day when family could go up and greet people after landing) I barely recognized him. He went on to have several reoccurrences with the disease until his doctor sent his bloodwork to the lab at the CDC and discovered that it was this new variant and prescribed a different medication for it. He has been malaria free since.
There was one thing I was absolutely certain of the day Dean returned home looking like he’d spent time in a concentration camp. I knew that I had dodged a bullet that had it entered my body, it would have been a fatal blow. I was full of gratitude that I had found the strength and courage to stay behind. I have no doubt that malaria would have done me in.
It was unfortunate for me that as Evangelical people we had to find a way to miracle-ize the story. We had to find a way to see that God kept me home and kept me alive. There is a verse in the Bible, 1 Peter 3:7 that goes like this.
“You husbands in the same way, live with your wives in an understanding way, as with someone weaker, since she is a woman; and show her honor as a fellow heir of the grace of life, so that your prayers will not be hindered.”
This verse is just accepted in the Evangelical kingdom as truth and this was the way we made sense of these experiences that year. The lesson to be learned was that I was a weaker vessel and Dean needed to know that in his bones. This one lesson would follow me for three decades and be a contributing factor to the exacerbation of my body’s war against itself.
I had been in remission and able to live a very full life until March of 1985 when I had my first baby just after my 24th birthday. The hormone changes that come with pregnancy functioned as the trigger to move my body back into battle with itself. As with all autoimmune diseases they rarely present in one full blown obvious illness. Instead the body responds to stress, biological, environmental and mental stress by triggering the inflammation response. It can begin slowly or flare up in earnest. It can affect any part of the body with connective tissue, which is pretty much all of it. After my baby was born it began to attack my bladder. Though that first year of motherhood was literally the best year of my life, I constantly dealt with some really annoying pelvic pain. I was diagnosed with interstitial cystitis, a painful condition that causes the lining of the bladder to crack and bleed and Endometriosis where the lining of the uterus goes the wrong way and attaches to tissue outside of it. The cystitis was dealt with through medication but a surgery was needed for the endometriosis.
My doctor performed a laparoscopy. With two little incisions he inserted instruments, including a camera into my abdomen and looked around. He said it looked like someone had shaken coffee grounds around my organs. He explained that cells from my uterus had gone the wrong way and that whenever I had my period, those cells did too. The result of that process was intense pain every month. He lasered these spots off and encouraged me to hope for better days ahead. He also encouraged me to consider having another baby if I wanted anymore because the endometriosis would likely return and could result in infertility. When my son was 15 months old I found out I was pregnant again.
I cannot say that I loved being pregnant the first time until well into it. The first 6 months of that pregnancy were overwhelmingly horrible. I threw up in earnest for the first three months and then at a less intense level for another three. Finally, by Thanksgiving I was able to enjoy a meal without an abrupt exit. By March I was ready to have my baby. My long torso made it appear as though I would be having a small baby, even my doctor predicted 5-6lbs. After 18 hours of labor and a few minutes of pushing an 8lb. 1oz. beautiful little red head arrived in my arms. I was completely gone. Having Stephen was so fun that it overwhelmed all of the other nonsense.
My second pregnancy was much less severe in terms of morning sickness but getting the baby here much more difficult. A little nausea in the morning satisfied by a few soda crackers and life went on. I worked part time in an office job and looked forward to another baby who would arrive almost two years after the first one. It was going so well in the beginning I thought that maybe I actually would end up with the four kids I’d wanted. That sense of bliss didn’t last for long because in the 13th week everything turned upside down. On a calm weekday morning, with my son playing by himself in the living room and chattering to his toys, I sat down to read and pray for a bit. I had put the kettle on the stove for hot tea and when it reached boiling, I got up from my chair, turned to face the stove and felt a sudden gush of fluid escape from my body. As I stood there knowing my water had just broken I went into another dimension and began to work the problem.
I had a regular checkup scheduled that afternoon but knew I could not possibly wait for it. I immediately called the clinic. They wanted to see me right away so I found a sitter and went in. I have learned that memories associated with trauma are vivid and intense and as I write this, I am right there in that space in time. I was greeted by the nurse and my doctor with serious concern. It felt as if they were talking…very slowly. A sample of the fluid was looked at under the microscope. A fern like looking cell revealed that it was indeed amniotic fluid. My heart sank. My doctor grabbed his tiny little black doppler, squeezed a bit of gel on me and sought for an audible heartbeat. He found it. A strong and healthy little whishing heartbeat sound entered the acoustics of the room and a hushed silence briefly fell over us. My doctor said it was unusual to hear it so clearly so early but that it sounded very good. This was 1986 when ultrasound technology was just beginning and hearing a heartbeat was rare for mothers. It was so amazing to me. He then sent me straight up to the hospital for a visual ultrasound used only in crisis situations. I’ve rarely been so afraid.
As I laid on the table with the technician’s warm jelly all over my belly and watched as she moved her probe around, my husband standing by my side watching too, the most amazing thing occurred. This little human waved an arm past the screen revealing all five fingers and seeming to wave at us. Dean later told me that when he saw that he took it as a sign that the baby was waving to tell us she was going to make it. As human beings we find the hope where we can and that was it for that day. It was enough to get us through.
There was no reason to admit me into the hospital that day but it was confirmed that the amniotic sac surrounded my baby had a hole in it near the top. I was sent home with the instruction to do only light house work and call the clinic if I started cramping or had any other issues arise. I now know that for my doctor and others, it was a certainty that I would miscarry. It was much later before I learned that I had actually been given a less than 1% chance of carrying a baby to term. Instead of the expected miscarriage, however, I remained pregnant for weeks.
Fifteen weeks later, by emergency c-section, while under anesthesia because the epidural failed to numb my left side, a team of specialists in a teaching hospital where I’d been in bed for 3 weeks, delivered a 2lb. 2oz baby girl. A perfectly formed, very pink and crying baby girl. Everything about it was miraculous. Everything about it was also profoundly traumatic. I have spent the rest of my life trying to understand life lived in this kind of paradox. I have also learned that as a woman, I am not a weaker vessel. I am only an equally strong but different vessel.
I share the story of my babies’ births because the pregnancies are both so directly related to my health, to autoimmune disease and how I have processed it all throughout my life. It was pregnancy and hormones that functioned as the trigger to move me out of remission. It was figuring out how to live life as a young wife, mother and teacher that exacerbated the disease. I have enjoyed seasons of remission and horrific flare ups. Simple colds, flu and viruses have flattened me. Stressful circumstances in my life have also contributed to this reality in my life. I was on medication for several years but at present take just a thyroid medication for anything to do with autoimmunity. I have learned so much. I have lived a beautiful but hard life.
This past summer I spent weeks meeting with a holistic dietician for issues relating to my gut health. She believes that if I can live 100% holistically, I can rid myself of autoimmune disease. I’m not certain that is possible for me. In fact, I’m pretty certain that it is not because I have other facets of my life that I value more than being 100% cured if this is the route to the cure. To change my life that drastically at 60 would take an intense focus and radical changes in several places and though I continue to make changes all of the time, I do not expect to be fully healed in my lifetime.
I have made many of my dietician’s suggested changes. I have been taking the supplements suggested in response to the lab tests she had ordered for me because they make sense to me right now. I have found it very helpful and encouraging. At the same time, the expectation to be 100% healed comes with an awful overwhelm. It is also always and I mean it sincerely, ALWAYS shame inducing. It implies that anything less than arrival at perfection is not enough. It is NEVER enough.
This last week I heard an OnBeing podcast discussion with Kate Bowler. I listened after my friend Jayne suggested it to me. As I sat here in my office, organizing my closet for the umpteenth time, I had it playing in the background. She said something in the discussion that broke me wide open. I don’t remember the words right now because the memory of breaking down in a heap and of feeling the flow of tears stream down my face is overwhelming my brain so that I cannot recall them. I remember just saying out loud,
I am enough.
What I have done is enough.
What I will do is enough.
Whatever level of healing I obtain is enough.
It is ENOUGH.
I hope I can write more about how this illness has impacted my life in the days and weeks to come. After breaking open again this past week I have realized that living with Mixed Connective Tissue/Autoimmune disease has been a thread in my life for most of my life. It has also been something that has been hard to talk about sometimes. No, it’s hard to talk about all of the time because when I do, I feel like I’m standing on a stage looking at folks with loaded nerf guns pointing at me. The spongy nerf projectiles all have a cure written on them with a sharpie marker and I am supposed to catch each one and apply that cure to my body. The deal is that only if I catch and apply them ALL will I be able to be fully whole. So…if you are reading this and have such a loaded nerf gun, please refrain from shooting it if you can. I have probably heard of your cure and I have probably spent a good deal of change trying to embrace it.