He’s Still Writing A Beautiful Story.
(I wrote this for my writer’s conference — but wanted to share it for disability awareness month here as well. My story has changed with my illness — but God has been so good.)
Through many dangers, toils and snares,
I have already come;
’Tis grace hath brought me safe thus far,
And grace will lead me home. — Amazing Grace, John Newton.
Over the years, since the beginning of my journey with autoimmune disease and chronic illness, there have been times when I thought it would absolutely break me. Honestly, there have been times when it HAS broken me — found me crying into my hands, my pillow, or the fur of my precious service dog, Henry, and telling God I could bear the pain no more — but He has seen me through.
Looking back, in the darkest moments, when it seemed that my life was forever changed and I felt as though my whole self had been taken from me for lack of a better way to describe it, God, in His grace and mercy, was rewriting my story, creating a more beautiful one, using the pain for my good and His glory.
See, the story of my illness begins a month after I married my best friend and amazing husband back in 2012. After having come out of a terrible situation — and just sure I would never consider sharing my life with anyone, the Lord had other wonderful plans and we had a beautiful wedding and had just settled into our fabulous new home in my small town. It was a dream come true.
Then one weekend, a month later, I — a healthy nurse and long-distance runner at the time — fell terribly ill with weakness and shortness of breath. When all was sorted out, I was profoundly anemic due to undiagnosed celiac disease that had caused a GI bleed.
I was shocked — but made the necessary dietary changes immediately and treated the anemia and prayed that all would be sorted.
Unfortunately, autoimmune diseases both tend to travel in groups and run in my family — and it was not long before I had symptoms I just could not contain — extreme fatigue, burning knees, night sweats, swollen joints, heat intolerance, pain throughout my body. I worked in an urgent care clinic at that time and was requiring steroid injections just to function.
I would eventually be diagnosed with rheumatoid arthritis and several other autoimmune conditions that required long term steroid therapy in addition to maintenance medications. This caused stress fractures in literally every metatarsal in my feet so by 2017 my days of working as a nurse had to come to an end.
I was so distressed and unsure of what would happen, only in my late thirties at that time, losing abilities often, and feeling like I would not be able to do anything productive again.
I wish I could say that was the bottom of things — but it was not.
From there, I laid down for a nap one evening and woke up literally feeling like my left foot was on fire. I have a very high pain tolerance after all these years — but the pain was almost unbearable. Even the air blowing on it was excruciating, and it would not hold weight.
My husband rushed me to the emergency room where even IV morphine would not touch the pain.
I was eventually diagnosed with Complex Regional Pain Syndrome (CRPS), a neurological disease that is considered one of the top three most painful in the world. On the McGill Pain Index Scale, it ranks a 46 of 50, above unmedicated childbirth and amputation without anesthesia. It is called the “suicide disease,” because the intractable pain can be so devastating.
I remained in this state of Stage One burning pain for several weeks, eventually going to a Stage Two — which is still awful but somewhat less intense. That lasted for months. Finally, I went to a Stage Three, where the limb was numb.
Some months later, the whole experience would repeat in my right leg.
After that, I would also develop many symptoms of systemic CRPS, including autonomic nervous system issues, full body “jerks,” heart rate abnormalities, and major GI problems. Nothing would be the same again — and there will always be a lingering fear of another limb “spread” and the agony that brings.
Because I was now also immunocompromised, I somehow developed osteomyelitis in my right foot, which required surgery, a week’s hospitalization for sepsis (which was terrifying), and then six weeks of home antibiotics via a PICC line.
I came through that — and then the whole thing recurred in my left foot. So, we repeated the whole process again.
This kept happening — with the worst of it occurring during the height of COVID, so I was in the hospital for a week, on contact isolation for MRSA myself, with no family able to come to me, and terrified of being there.
(After all of this, I, already a person with anxiety disorder, have some serious medical anxiety issues I have never had before. It is almost impossible not to.)
But the Lord saw me through.
Finally, because I suddenly lost the ability to hold weight on my left hip, the source of the infection was found in my left SI joint, and I had a major surgery to remove the infection and implant antibiotics — and another six weeks of home antibiotics via PICC.
Whew!
In fact, as I write to you now, I am recovering from a smaller surgery to take out some old hardware in my right foot that was harboring a bit of bacteria, so it had to go as well. That was a God thing too — it was found before it escalated into a total situation, and I am so grateful.
Through all of this, with all the medications and procedures, I have seen GI bleeds and gastroparesis and migraines and falls and times where I could not walk and was in a smartchair.
When I had to give up my work as nurse and kept losing more and more abilities, it truly seemed to me that I was just sort of done being a productive person. My family had to do everything for me for quite some time while I was physically so weak. I began to fear that I was forever a patient only now — like my identity, myself, was gone.
I was frightened and in pain and filled with dread at the thought of more medical challenges. It was a dark forest to wander, and it felt like I was getting in deeper.
But. God.
This is not just a story of how crazy sick I have been — it is a story of how God — in His amazing grace and mercy — has used it all to start rewriting a story better than I could have ever dreamed, even in the midst of my suffering.
See, when I was young — in youth group — I felt called to some sort of ministry. However, my life choices took me off that path — and I long ago assumed that would not be for me.
In fact, several things had changed over the years, some due to my life choices and some due to circumstances beyond my control.
I had an academic scholarship to Mississippi State but ended up being unable to go when I was young.
I always wanted to teach — but ended up taking a scholarship to a local nursing program as it was the best choice for my family at the time (and it worked out that my years of nursing were a God thing and a blessing).
I dreamed of being a writer — but, in my mind, it was too late for that. . .
As it turned out, God had other — more beautiful — plans.
In 2 Corinthians 12:9, in writing about his thorn in the flesh, the Apostle Paul says, “But my grace is sufficient for you, for my power is made perfect in weakness (NIV).” As I fell more and more ill, I learned to lean more and more into the grace and safety of our Father — and He held me and saw me through, as He does every day.
As I was at home, I started a little blog, The Autoimmune Hippie, to share my thoughts and experiences — and was surprised to see it begin growing. I really did not expect anyone but maybe a few friends to read — but it turned out that many spoonies — chronically ill people like me — really needed the comfort and encouragement of someone they could relate to. I began to see God using my pain to reach others who were walking the same path.
From there, because of the encouragement of one of my dear friends, I also became involved with the Southern Christian Writers Conference, which was — and continues to be — such a blessing and a source of inspiration in my life.
Slowly, I wrote more, and God gave me grace to dream bigger dreams — and the opportunity to go back to Mississippi State Online as a much older — and deeply grateful — student.
After all these years, I am so thankful to be attending in a way that works even when I am unwell. My heart’s desire is to ultimately get my MDiv — but — as wonderful as all of this is — that was not even the best. . .
My first three weeks as a student at MSU had me standing on my head in the best way I could have ever asked for — because I was also working to finish my first book at the same time.
The Lord, who was not done and did have a ministry for me, placed on my heart to write a devotional book for spoonies. I cannot explain the redemptive grace of His using the pain and suffering of my illnesses to hopefully help even one person. It has been so healing for me.
He gave me all my writing dreams — and showed me where my tiny place of ministry is as well. I could still just burst with joy and praise when I think of it. It is a story only He could have written.
Brennan Manning in his book, The Ragamuffin Gospel — one of those life-changing books for me — wrote, “It remains a startling story to those who never understand that the men and women who are truly filled with light are those who have gazed deeply into the darkness of their imperfect existence.” Having gazed through the darkness of illness and anxiety and my own faults and flaws — and living with them all — I stand it awe that our Father can use my brokenness in a small way to shine His light for my people.
He is such a good good Father.
I still have many days of severe pain and fatigue, days that are just rough. There are new symptoms and medical appointments and side effects. . . This is just the chronic illness life.
However, I am so thankful that His grace has redeemed this suffering for my good and His glory — and I pray that He will continue to use me in any small way He wills.
