My life has been so full and blessed. I had a happy childhood, met my husband of 30 years in college and we welcomed the births of our four beautiful children together. We have a wealth of close friends and family and have shared many wonderful times. Our family photos chronicle a life of fun and fullness. We’ve seen the Lord’s hand in our lives and ministry. We’ve had some pain and a few bumps in the landscape (and we’ve helped many others through personal pain and heartache), but there has been relatively few clouds to darken the horizon of our lives personally. I am blessed! Life is beautiful and sweet.
So in the context of this peaceful backdrop I began experiencing some strange neurological symptoms in June and more in July while on a family mission trip to Jamaica… just some slight slurring of my speech and difficulty manipulating food in my mouth while chewing. Disturbing, but easy to “brush off” as nothing when I had good energy and felt great.
On returning to the Atlanta airport, I realized that my lower jaw and lip felt numb. But, after a CT scan and MRI of my brain and a lot of blood work, nothing showed up. My PCP referred me to a neurologist in Little Rock and after the first visit on August 28, she said she was “stumped” by my symptoms, but would order some further testing. “No big deal; perhaps this was something the dentist or the chiropractor could fix”, I thought.
I confidently went to the nerve conduction study and EMG on September 13 truly believing that this was all “nothing”, my symptoms would just mysteriously go away and that we’d never know what caused them. Yes, I was very confident, until the doctor doing the test said my tongue muscle was atrophied and my tongue was “fasiculating” (twitching). Could something be seriously wrong?!
Then came the “new information”…
She said the nerve study was not normal, my symptoms were very concerning and she “suspected ALS” (that’s Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease!). My foggy recollections about ALS from nursing school helped me know that this potential diagnosis was NOT good!
I came home from that appointment and spent 3 hours in my hammock by the lake wrestling with the Lord…crying, praying, journaling and trying to surrender my will to His. Please let this cup pass from me, I begged.
I asked for an anointing service for the next day, on Sabbath afternoon. What a blessed, poignant time of faith and prayer with friends as we shared the very real possibility of a life shortening illness, but trusted together that God will give healing, either instantly, over time, or for sure at the second coming of Jesus…as He sees best.
Then came a battery of more tests…more MRI’s, barium swallow study, mammogram, uterine biopsy, lumbar puncture and a ton more blood work. All came back “within normal limits” or “negative”. I knew this was not necessarily “good news” as ALS is partly diagnosed by ruling out everything else.
I wasn’t as confident going into the follow up with my neurologist, October 2, as I had been two weeks before. Surrounded by my supportive husband and siblings we awaited her diagnosis. She was compassionate in sharing all the results and then said she was “95% sure” I have ALS. We shared some tears with her…and then left her office.
What does one do with that sort of “new information”? I didn’t sign up for this! How can one doctor’s visit suddenly change life as you know it? Researching on line in my times of wakefulness in the middle of the night did little to help my insomnia and restlessness.
So many questions….
How do I “do life” from here with a faith based optimism? Where do we turn for help? How can God direct us with this mind numbing diagnosis and bring something beautiful in my life and experience with Him? He makes no mistakes. How can I learn to trust Him no matter what my future holds?
Hence begins my journey…and my blog about this journey.
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