This is your pilot speaking…
The radar lit up like Christmas lights with blobs of yellow and orange surrounding a central area of red situated right over my connection city. My flight was diverted to Knoxville on my way to the national Myasthenia Gravis Foundation of America conference. Seems we were running on empty and didn’t have enough fuel to wait out the storm. I am all too familiar with unscheduled stops.
THIS IS NOT WHERE I PLANNED TO BE
When I de-boarded I noticed a wheelchair sitting on the ramp and it occurred to me, the last time I traveled by plane it had my name on it. Never again will I take the ability to walk for granted. I’m thankful my myasthenia gravis (MG) is controlled; albeit with 14 pills a day and an IV infusion every three weeks.
None of us planned to spend the night in the airport. We could not choose our circumstances, we could only choose our attitude, and it’s highly contagious. Apparently some people thought the airline controlled the weather, but most were pleasant. I met some fascinating people, including a biblical archaeologist. I smiled as I watched grandparents Face time with their four-year old grandson before we finally flew on to Charlotte, North Carolina.
NOW I WAS RUNNING OUT OF FUEL
Actually, I was running out of neurotransmitter; my eyelids drooped and my feet dragged. These are the first signs I need to take another pill. I hadn’t stayed up this late since I delivered babies, before my diagnosis forced an unscheduled stop of my career as an obstetrician.
I”LL MAKE THE BEST OF WHERE I AM
As a member of an online support group, I’ve met other MG’ers from around the world. Only someone with MG can understand what it feels like to have gravity turned up several notches every time you try to move. I consider them genuine friends and they proved it.
Expected to arrive at my destination at 3 a.m. I wondered if an Uber would be available to take me to my hotel. That’s when I received a Facebook message from a fellow MGer who lives 1,000 miles away from me. She was rerouted too and now on my flight. Bonus-she had a rental car.
COMEDY OF ERRORS
The rest of the night was a comedy of errors, except sleep deprivation is not funny with this disease. She walks with a cane and sat to rest while I went to baggage claim. Her luggage made it, mine didn’t. I could see her looking more and more like a rag doll, but she never complained. Walking to curb, we looked like we were carrying an invisible load that weighed a ton. Delirium set in when we discovered the shuttle didn’t run and the rental car office didn’t open until 4 a.m. Now it was my turn to wait.
Finally I got to my hotel at 5:15 a.m. and slept a couple of hours before our first meeting. All-nighters used to be an occupational hazard for me. Not anymore. That was a different body and different life.
Still without a clean shirt, my friend pulled into Ross so I could buy a new one and we met a couple of cyber friends for breakfast. We were literally from four corners of the United States, bound together by an online friendship and a disease most people have never heard of.
RESCUED
I can’t recover from exhaustion and in my stupor I set the alarm wrong. I would have missed my flight home except another MGer, who offered to take me to the airport, called and woke me up. You should have seen my weak arms scrambling to organize my suitcase while I sat in the backseat as if I were being chauffeured.
Philippians 4:11, “I don’t say this out of need, for I have learned to be content in whatever circumstances I am.” HCSB
MG is called the snowflake disease because everyone is affected differently. In reality, life affects us all differently. The crux is, are you content in your circumstances?
You may have delays and unscheduled stops in your plans. You may not get to the destination you envisioned. Life deals all sorts of interruptions and diversions. Make the best of it. Enjoy the people who cross your path and be thankful for the blessings.
Snowflakes are fragile, unless linked #IHaveHeardofMG #TogetherWeAreStronger Click To TweetOur muscles are weak, but our wills are not. Together we are stronger.
Thanks for helping promote MG awareness during June. Spread the word. If you know anyone with MG please encourage them to stay tuned for more info about an upcoming support group and click her to watch a video about the walk to”Stomp out MG.” To get us all connected we are encouraging all patients to register with the MGFA.
My life plans too have been diverted – by my choice but because of someone else’s poor decisions. I agree, attitude is important. I believe God has a plan for us all and His is much better than ours – i must walk by faith and not understanding. I LOVE MY FAITHFUL LORD!!!
Thanks for sharing that
Thank you for sharing your experiences. I use a cane and am still not diagnosed with anything yet. It turns out I had the EMG test and no Myasthenia Gravis, nerve or muscle disease, (nor is it MS, Lupus, yet I am still struggling. I see a Rheumatologist at UC Davis Medical in Sacramento mid July. I do show arthritis on my spine. It took me 7 weeks to be OKed by Insurance, several for an appointment. I am thankful to have coverage however. Is there any way to speed up the process of getting ok from Insurance that you know of? That is part of why it’s taking so long to get a diagnosis as the wait time between Insurance and the appointments is terrible. I think that is part of the reason it takes so long. I’ve been going at this for 15 months now.
Fortunately in January I blessedly improved a little so that I don’t have to spend 3-8 hours in bed, and get to do more even out of my house. I do a little walking around Walmart with a cart to assist instead of a cane then. I’m thankful to God for more mobity and the vibrations have gone away.
I still don’t know how to pace myself because I can’t tell from day to day how much strength I will have for doing. Any suggestions would be appreciated?
Praying you get answers soon. Pacing is definitely the hard part. Feel free to email me vickie@vickiepetzhenderson.com
Vickie, you are such an inspiration! GOD is using you in a very powerful way, sweet sister. Thank you for sharing your journey with us. GOD bless you, beautiful friend! 🙂
Thanks for sharing Dr. Henderson. My Dad has MG, and I’ll be letting him know about the coming support group and walk! 🙂 I appreciate that your posts are real, but God focused. Our hope comes from the Lord, the maker of heaven and earth! Thank you for using your story to encourage others. God is strong when we are weak.
Yes He is! Hope to meet your dad