As some of you may know/remember, in the spring of 2007, Jonathan mysteriously got very ill. He was a healthy 25-year-old studying for finals when he began having severe unexplained muscle pain and weakness. Not knowing what we were dealing with, he was taken to a Quick Care facility and from there ambulanced to the worst hospital in these the United States of America (no joke. I’ve had better health care in rural Bolivia. Don’t let anyone you love or even don’t like go to UMC Hospital in Las Vegas). He was there in ICU for a week after the muscle pain spread to his respiratory muscles and was unable to breathe without an oxygen forcing mask. He had pneumonia. That much we knew, but we did not know what was causing the pain and weakness.
As I was days from delivering Caleb, we were more than anxious to have him discharged from the hospital and the doctors there were happy to oblige because they didn’t know what to do for him anyway. Ten days after admission he was released home. Three days later, Caleb was born and the night we took Caleb home from the hospital, Jonathan was re-admitted.
Needless to say, this was a very challenging, dark time for our family. Jonathan felt helpless and scared that he would not become well. He had had one attack so severe that if it had not been for the thought of his wife and baby he might have given up the painful struggle to breathe. Gratefully, he endured the pain until the pain meds came—one hour and 45 minutes after being in level 10 out of 10 chest pain. This shattered his confidence and terrified him that the doctors and nurses under whom he was receiving “care” would let him die—right there in a hospital bed.
For three weeks Jonathan received very strong antibiotics that made everything taste like metal. He received a “pericardial window” where a chest tube was inserted to relieve the vast amounts of fluid that was accumulating around his heart. Needles were used to remove the fluid from his lungs. Finally he was receiving treatment; however, the initial concern of the severe muscle pain and weakness was not being addressed and Jonathan was beginning to waste away. Nearing the end of his hospital stay, he was down 20-25 pounds of muscle. His muscles seemed to be melting and no one could explain it. He had a muscle biopsy and every possible blood test there is. We didn’t know the cause and therefore didn’t know how to treat. One of the most challenging days was when the hospital told him there was nothing more they could do. He would need to be discharged to a more advanced facility—the Mayo Clinic in Phoenix. The problem? Mayo would not accept him as a transfer. What now? Where do you go when you’re not well enough to go home, the hospital is kicking you out and the better hospital won’t admit you?
Probably more in desperation than in inspiration, an infectious disease specialist determined that what Jonathan had could not be infectious. He had been on antibiotics for weeks and by then, any self-limiting virus would have worked its way through. His conclusion was that perhaps it was autoimmune. Autoimmune disorders come from the body’s own normal immune system response. The problem arises when the body begins attacking self instead of, or in addition to, foreign, invading cells. Therefore, the most common treatments are immunity suppressants that dampen the body’s immune system so that it will stop attacking self.
Jonathan began taking a corticosteroid known as prednisone immediately. We still didn’t know what he had, but finally we had a direction and a treatment worth a shot. Within five days or less, Jonathan was discharged and significantly on the road to recovery. He was down in the 130’s for weight, moved like a 90-year-old man and looked like a Holocaust victim the way each vertebrae in his back stuck out, but THIS was an improvement from his health in the hospital.
After a month in two different hospitals, two weeks as an outpatient at the Mayo Clinic and a visit to a specialist at the University of Utah, we still did not have a diagnosis for the sickness that nearly relieved us of my husband and child’s father. But, this was okay. As long as he was improving, I didn’t care what he had.
While the worst of the trial was over, this was a gift that kept on giving. After that, we were told we were denied for coverage and would have to pay the $250,000+ in medical bills ourselves. We very nearly filed bankruptcy. Jonathan was forced to take a year off from school because he could not continue in his courses until he had finished the prior courses—the very classes for which he was studying when the sickness began. It took him three months to have the strength enough to study for and take his semester’s finals and was too far behind to catch up. He would need to resume with the following year’s class. But perhaps worst of all, we didn’t know how to believe that good things could still happen. Believe it or not, this book you’re reading is the nutshell version of the events that went on. Even before this devastating sickness, 2007 had already brought us the death of a family member, a rollover high speed car accident (we left the freeway going over 70 and landed on the roof of the car), and the theft of my custom wedding ring among other challenges such as fears of our baby’s safety after he’d stopped moving in utero. After all of this and other things, we began to feel that only bad things could happen in our lives—that we should hope for good because it was only that much more heartbreaking when the inevitable trial persisted. This hopelessness lasted most of a year before we could finally begin to see the sunshine through the clouds.
Then, slowly, life began to turn around. Just because something went missing, that didn’t mean it was gone forever. Just because you felt a little anxious, it didn’t mean the worst possible thing really WAS about to happen. I began to see hopefulness and happiness again. Throughout all of it, I recognized Heavenly Father’s promises. I knew Jonathan would be well. I knew He must have had things He wanted us to learn through all of this. BUT, years later, I still wasn’t sure what.
Well, I’m still not sure of all He wanted us to gain through those darkest months of our lives. BUT, I do know some things and over three years later, I can honestly say I’m grateful for the lessons learned.
About a week and a half ago, Jonathan began relapsing. The muscle pain and weakness returned. After trying the steroids to suppress the symptoms, with no avail, Jonathan returned to the hospital. He has been there now since last Friday. They still don’t know what he has. His muscles are beginning to waste again. He is needing to endure pain and I am needing to step up things at home as well as with him to be the strength he needs me to be.
But, I can. I know now that I can. My perspective has grown immensely since those first dark days over three years ago. I know Heavenly Father did not simply lend us strength to endure, but in fact strengthened us. I know this time around is much easier to endure because the treatments of yesteryear—when administered in an IV and in connection with powerful pain medications--are working. It is easier—no question. But, if this had been the FIRST time instead of the relapse, I’m certain I would not be handling it as well as I am.
So, I’m grateful for growth. I’m grateful—not necessarily for trials—but for the opportunity and the integrity that develops in the hottest part of the fire. I know Heavenly Father’s promises are sure and do not doubt that though Jonathan’s condition may be chronic, he will endure and be healed. I know that the sealing power under which Jonathan and I were married is absolute and that we have used it to weld together in times of difficulty. I always loved my husband, but enduring trial together has made what was good and strong, enduring and unbreakable. This is but a small moment and I feel grateful to say that because we have been asked to endure much worse, this trial is very manageable. We are getting along fine and assured in the knowledge of God’s love, His power and His plan.
I know the strength of prayers and ask any who have read this verbose post if you would please add Jonathan and our little family to your prayers, we will all be blessed by it. Jonathan is improving and doing quite well on his medications, but is not ready to come home to us, which is of course where we would have him be.
In the meantime, I am so grateful. We have a blessed life. I’m grateful for the perspective enough to feel that as well as know it. And maybe this trial will reveal there was more to learn, but I’m thankful for some understanding that the last time didn’t break me, but did in fact make me stronger.