Some of us hide our inner struggles rather well. We may be choked by fear or overwhelmed by just getting by. Or, maybe we just don’t want to draw attention to ourselves when so many others have seemingly greater battles. I understand all of the above. Sometime it just feels easier to simply post jokes or cute pet pics or random thoughts about our world.
Today, I risk sharing something more profound, something that may actually save a life. I’m wrestling with full disclosure right now, but I write the following with the hope to be of help to others.
This past week, comedian, performer, and humanitarian Jerry Lewis died, but his legacy for raising billions on behalf of the Muscular Dystrophy Association (MDA) lives on. Even in someone you know. Me.
In August 2010, after four and half years of tests and waiting and more tests and waiting, I was diagnosed with a rare adult-onset metabolic muscle disorder called carnitine palmitoyltransferase II deficiency (CPT II). Yes, I still have to look up the spelling. A few weeks after hearing the results from my muscle biopsy, Jerry hosted his last MDA telethon. I wish I had written a thank you note to Jerry. He championed so energetically for those of us with muscle diseases.
Basically, at the cellular level, my body does not efficiently transfer fats for energy. Children born with the lethal neonatal CPT II form die within days, those with the severe infantile form often die by their teen years. I am grateful that my form of CPT II mainly results in occasional flare-ups of Charlie horses and overall muscle pain. A few years ago I consulted with the head of neurology at Denver’s University Hospital and he informed me that I am in .02 percent of the population. The U.S. National Library of Medicine reports there are “more than 300 reported cases.” I am a rare individual indeed. J
I daily take the enzyme my body lacks and I’m learning to pace myself with my diet, exercise, and rest. The docs also think the onset of the metabolism disorder triggered my zillion food allergies. But you know what? I am grateful to be alive and able to function pretty much without a blip. Some statistics report that 96 percent of chronic illnesses show no visible symptoms. Many of those with not-so-obvious health conditions (depression, chronic fatigue, etc.) grow weary from the skepticism or the well-meaning “but you look so well” comments.
After my brilliant neurologist broke the mitochondrial disease news to me, I quipped, “So I’m one of Jerry’s Kids!” It’s humbling to think about being a part of such an extended family. I want to thank Jerry and all of you for caring about the millions of people helped by the MDA over the years. It’s taken me seven years to feel comfortable enough to say something more publically about my being under the MDA umbrella. I share this post, not for my sake, but for Jerry’s Kids who still long for a cure. For their families who endure and hope for better outcomes.
Will you do one thing for us all? Turn on the Labor Day telethon this weekend and give a salute to Jerry. Without his untiring efforts that have changed the course of numerous neuromuscular diseases, I may not be typing this right now. If you’d like to make a donation to the MDA, please do. I think there’s still plenty of handsome fireman collecting with the Fill the Boot campaigns too.
So thank you for being the kind of friend whom I feel safe enough to share the truth. And although I’m a bit late, thank you, Jerry, for your decades of Labor Day weekends urging “just one more dollar.” THANK YOU!
“I shall pass through this world but once. Any good, therefore, that I can do or any kindness that I can show to any human being, let me do it now. Let me not defer nor neglect it, for I shall not pass this way again!” —Jerry Lewis
I can tell you are a strong person in your heart and soul. Your muscles just need some help to be as strong as heart and soul. Glad to know you are taking care of yourself.
Thank you, Jan. I truly appreciate your encouraging words.
Thank you for sharing so bravely and transparently! You are an inspiration with your attitude in the face of such challenges. Jerry Lewis was such a gift to the world and you are a gift to me personally and so many.
Thank you so much, Jessamy. I appreciate you and our friendship and thank God for YOU being a gift to our world.
You are a true leader and humanitarian Beth. All of us who know you truly appreciate you sharing and helping others to help themselves.
Oh, thank you, Allison. I appreciate all you’ve done to keep me in steady health. You’ve certainly seen me through some rough patches. I am grateful for you!
You ARE a treasure! May God bless your sharing and may you find new comforts and remedies in the next year. Happy birthday (early) sweet friend! KP
Thank you, my dear friend. You continue to be such a source of both wisdom and humor in my life. Blessings on your health and renewed strength.
You are brave and resilient, Beth.
I feel sad for you to battle these ongoing flares and setbacks…
but GOD…
You are fearfully and wonderfully made, dear lady.
Keep committing your ways to Him … trust, also, in Him and HE will do it!!!
You’re a blessing and you inspire me and countless others.
Love and blessings…
Beth, you are a champion to many of us who have known you over the years, and more recently from social media. Patti and I applaud you for your vulnerability and opening up your life for us to pray for you more diligently.
Thank you so much, Rick and Patti. I truly appreciate your friendship, encouragement and prayers. I am honored to know you! (I had a bit of a Mail Chimp glitch and just saw your comment here. Sorry for the delayed response.) Can you believe we were just kids when we first met?
Thank you, Reasie! I truly appreciate your prayers and encouragement through it all. I always value how you bring me back to the faithfulness of God.
Beth, I’m so grateful you are doing as well as you are and thank you for appealing for help for all! That fundraiser is undoubtedly Jerry Lewis’ most lasting legacy.
Nancy, I am so grateful that I’ve learned to manage the dailyness of this condition. I remember Jerry’s goofy roles in movies, but he was serious about helping thousands through his MDA work. Thank you for helping me remain steady life’s ups and downs.
Thank you for sharing. You are a gift with a beautiful spirit. And I love your dog.
Oh, thank you so much, Marie. I appreciate your kind words. Bellie sure is a gift from above. I miss seeing you!
Well written (of course). Thank you for sharing this here.
As you know, I also have an invisible disease, unless I have my cane with me. I know there are days where I do the “pity party” and then move on. I’m not suggesting you’re doing this in your post. I suspect anyone with chronic illness does this.
I don’t know how people do this without Jesus! I know He has me. That’s all we need.
Julie, thank you for sharing this. I know you totally understand the invisible side to a chronic health condition. Bless you for being a faithful encouragement and an inspiration of a woman who finds her true strength in the Lord.
Thank you for sharing. Brave you are and shall always be! Hug your collie often!
Thank you, Cindy. I will hug my collie right now. Good advice. 🙂
Thank you for sharing these words Beth! May the reach and soothe a heart that has perhaps received their own diagnosis. Love you friend!
Shelly, bless you. You certainly understand a diagnosis that takes you on a painful yet powerful journey. Thank you for being a personal inspiration to me and so many others!
Beth, you’re an inspiration. Having fought and still fighting some of my own battles I hope I’m as brave as you. Bless you my friend.
Thank you, Melanie. I hope that your battles are fading. You are such an upbeat, compassionate person and so many of us are honored to know you. Take good care!
Beth,
So good to hear from you! And what an amazing story you tell. God’s goodness just flows from your life and your creative pen. You are such a blessing. I am sure this has touched many lives. What an encouragement you are to us. Thank you for your obedience to His call.
I love your heart!
Sue, bless you for your encouraging words. I am so honored to call you friend and sister in faith. Thank you for always modeling such joy and steadiness. When I grow up, I want to be like you. 🙂
I totally understand the days when you just want to post jokes and cute pet pics… Keep going forward, Beth! You rock.
Thank you, Lindsay. I am so glad that Mrs. T introduced us. You are a joy to know!
Beth, as always, your faithfulness to our loving Saviour is evident. You are a testimony to all who know and love you! Praying He continues to hold your heart and give you strength for each day?
Thank you, Angie. I apologize that my original reply to you didn’t post. I appreciate your uplifting words and faithful prayers. You are truly gifted in being an encourager and being there for us all. Hugs and much love!