Why Don’t We Get to ‘Ring the Bell’?

Why Don’t We Get to ‘Ring the Bell’?

One of my closest friends, a fellow MG warrior and mom to an MG teen with juvenile arthritis, told me tearfully one day about how her daughter never got to “ring the bell.”

You see, her daughter’s primary juvenile arthritis (JA) treatment was chemotherapy infusions administered in an infusion suite surrounded by pediatric cancer patients. And each time one of the cancer patients finished their treatment, they get to ring the bell proudly to announce their victory. They suffered the same drugs and similar heartbreaking side effects and illnesses no child should ever face. But her daughter’s suffering inadvertently was not recognized equally like her peers. As a heartbroken mom, she watched over her child’s struggles, knowing they would never be counted the same, all while cheering on the others. Her daughter didn’t get to ring that bell. 

It made me think about the disparity in how our culture, and even medicine, views diseases like MG and JA versus cancer. 

Cancer is a dirty word that immediately gains both sympathy and attention. In one broken whisper, there is a sense of compassion for the hell a cancer patient and their caregivers must endure. The treatments, the devastating consequences of medicines, the emotional suffering that is sure to come. They are indeed brave and beautiful heroes in so many ways, and so are we. Do we not struggle against devastating side effects, the inability to afford treatment, and the anguish of our symptoms? Yet we are not seen on the same scale; our suffering is deemed incomparable, and by extension, unworthy. 

I recently watched a story on social media about a young cancer survivor. She recounted her fight with her wicked illness and the tearful joy at the astounding support she received from friends, loved ones, and the community. I cheered her on, but found myself asking, “Why not me, why not us?” Her race and ultimate finish line may differ from mine with MG, but when did we learn to measure suffering against suffering and find someone else’s journey lacking? 

I know, historically, that is not how cancer was always seen. The perspective on cancer has grown by leaps and bounds as it has challenged and changed cultural stigmas — it’s evolved into this beautiful butterfly of compassion and support. 

Still, my heart cries out in tearful anguish at the misguided hypocrisy of it all. I cry out for relevance and understanding, for sympathy and honor, to be known as brave, too. My fight may not be against cancer, but my fight is no less worthy of your love, your attention, or your steadfastness. 

When you don’t have cancer, and the battle is long enduring, you quickly find out the difference in perceived suffering. There are no banners waved high at your finish line or bells rung in victory. Our finish line in many cases is lifelong; our victories masked in the invisibility of our day to day, often unseen. 

My heart, in turn, begs the question, “Why is my battle not worthy? Why are my scars and pain and hell not worthy? Why is my lifelong fight not worthy of being believed, supported, and properly treated?”

Our culture has been conditioned and taught who is most worthy of compassion. Tell people in general conversation that you have cancer, and watch their reaction. Now tell them you have a rare and incurable muscle disease that has nearly cost you your life, and has invaded your life. A disease that slowly erodes relationships, love, passion, and dreams. 

Tell me that the years of procedures and surgeries and code blues and medicines that made me sicker than the disease are unworthy. Tell my mother who held me in her arms as I suffocated on my own saliva, that my fight is not as worthy. 

My heart cannot help but whisper, “Why not me? When will I get to ring my bell?” 

If I lost my hair, would I be worthy? If you saw me on a ventilator, would I be worthy? If I needed money for a life-saving surgery or research, would I be worthy? Would you show up during my treatments, even if it’s not chemo (which many of my fellow myasthenics now receive)? 

Would you stay by my side in the darkness, or run when you realize I cannot offer you what I used to? Would you make films, news stories, photo campaigns, and clothing lines about me? 

When will my fight against an incurable disease that stole so much from me ever be worthy? 

I AM worthy. And so is the cancer patient. And so are you. I pray one day soon, that the world will see that our battle is also worthy. And maybe, just maybe, we will get to ring the bell, too. 

***

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

11 comments

  1. Bravo Rebekah, bravo. As a fellow “MG warrior” I connect and echo your laments about the lack of recognition of the fearful changes that have r taken over my life. I’m just 11 months into my diagnosis, so am still in a lot of discovery. Probably the greatest take away I get from your well written articles is, ok so it’s not all in my head. These weird anomalies, large and small are not just me. I’m not whining when I report them. Whew! And while the man I am on the outside may be “withering away”, it’s still me inside here!

      • I don’t know if you’d be interested, but something I have been trying is CBD Hemp Oil. No THC! My Neurologist and I have reduced my meds because my lab numbers have come down. Wowzer! Right?

        • Rebekah Dorr says:

          Hey Charles!!
          Just be careful having your dr treat you that way. It isn’t how we get to base stability or success of treatment sadly. The titration level of antibodies doesn’t correlate to our stability or severity although it does trip up a lot of doctors. I know some patients who love the CBD oil. Big hugs and lots of success to you!!

  2. Ginger Dorr says:

    Soooo Beautifully Written! Soooo well expressed!!! Excellent!
    Bravo!
    There are so many precious people out there who are suffering with Chronic illness of all types who need to know they are loved, treasured, supported and valued!

    Thank you Rebekah for feeling their pain and giving them a voice. Validation is part of the healing and support they need.

  3. Maria Aren says:

    That made me tear up! But in a good way! Thank you for saying the thoughts many of us think pretty much daily. Big and warm hugs!!!!

  4. Carol Jones says:

    So well worded Rebekah, really expresses what a lot of us are thinking, but our thoughts and actions with this MG are not recognized by the populations at large. It is so unknown to many, including doctors!! We need understanding too! Bless you!!

  5. Doris Keen says:

    I know how very much you have gone through, but what is beautiful is the way you have reached out to others & helped them over many years. I pray for you daily, Dear Granddaughter & know that only Jesus gives you the love & words to write something this special to help others.

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