I Wish I Had A Bell To Ring!

dancingwithalsandlife.blogspot.com 

After the initial shock of being told by my doctor that I have a terminal condition called ALS, the next step was to muster up the courage to tell my family, friends, and coworkers of the devastating news.  Sharing this information with others was a very painful endeavor.  Retelling it over and over again was overwhelming and emotionally exhausting not only for me, but for my spouse and my family who had to do the same with everyone with whom they interacted. I was soon ready to send certified letters in the mail so I didn't have to verbalize and relive the pain and grief I was experiencing. Not only was I facing my own grief, I was also facing the stress people felt when I told them the news. I never knew what type of response I was going to get. 

Here are some of those responses. People put their arms around me and start sobbing for a long period of time. One person said, “Oh,” and walked away. I guess he didn't know what to say to me.  Some would say, “This is so sad, that sucks, you're way too young, or I'm sorry.”  I actually had one person laugh in my face because she was stressed when she heard the news and didn't know how to respond appropriately in the moment. Then later she was extremely embarrassed and apologized. People became totally flustered and stuttered over their words. Some were arranging fundraisers or asking me to be a recipient for a nonprofit organization which assisted individuals with bills due to their medical conditions. Groups of people were taking collections for my husband and I to go on a trip. I had someone say to me, “You’re a strong person. You can beat this. Keep exercising to maintain your muscle strength.”  And lastly, I had numerous people say to me, “Well at least it's not cancer, right?”  It's not their fault. Most people really don't understand ALS.  It is a rare disease per  The National ALS Registry Dashboard  the US has a prevalence of only ten people out of every 100,000 who receive this diagnosis. Approximately 34,000 cases in the United States in 2025. Lucky me! Whereas, with cancer since it is a widely known disease, everyone in his/her lifetime has been exposed to someone who has or had cancer. There are even commercials advertising medication to use to facilitate the remission of cancer.

Being diagnosed with any disease is not ideal. For some, it is a very long and courageous battle that unfortunately, sometimes, is lost. However, depending on what stage of cancer is diagnosed there's a possibility of treatment and remission. Having ALS means it is progressive and 100% fatal with no cure. With cancer, if an individual becomes cancer free after treatment she/he gets to bring a bell and everyone cheers and celebrates. I was ecstatic for a friend who recently rang the bell!  Although I was happy for her, I'm very embarrassed to say, I remember one day getting extremely upset and literally having a temper tantrum stomping my feet.  It was not because she rang the bell, but because there was no bell for me to ring indicating I am cured of ALS. It would be glorious if ALS had a cure, and people could go into remission and ring a bell, too. I know there's a lot of research happening so I'm hopeful one day this may be an option.

Several months after throwing the temper tantrum and reaching some level of acceptance of my disease, I had a thought. At least I know where I stand. There is no cure, and this disease is here to stay.  It will result in my death at some point. I thought about this a little bit further. Perhaps cancer patients, who are remission, may live in fear of it always coming back. I think that would be difficult and a stressful way of living, robbing a little bit of their peace and joy each day. Sadly, my friend, who was in remission and rang the bell, died this past year. Prior to leaving this earth, we would be on the phone supporting each other. I always thought I would leave this earth well before she did.

So we never know when it's our time to go. My advice is please tell and show your loved ones you love them. Live in the moment. Don't live behind the camera taking videos or pictures or aimlessly scrolling on your devices because it actually means missing out on the moment in real time. Be quick to love and quick to forgive because tomorrow is never guaranteed. I pray every day for an ALS bell. Even if I don't get to ring it in my lifetime, my prayer is that future generations will experience ALS in remission.

  

Enjoyed this post?  Never miss out on future posts by  Following Me - Click Here

 

12/24