None For Me

“You can ring my bell, ring my bell.” I feel like Anita Ward. I initially threw it out as a suggestion, but lately I’ve graduated to begging. Now, before you stop reading, Mrs. Ward and I are talking about two different things. The bell she wanted rang is an area we have not yet ventured into. We shall very soon…but not quite today. 

A few weeks ago I went in for my routine Remicade infusion. Now, I have been receiving these infusions every six weeks for 4 years now. But, this infusion, was different. During this recent infusion, I was hit in the face with a truth I honestly never considered. I gotta be honest, it took me a few days to process the new found truth. Candidly, just when I think I have accepted it, I discover that I have not. 

As you may know, Remicade is a low dose chemotherapy medication. Yes, that’s right. See, Crohn’s disease, like other autoimmune disorders, is routinely treated with low dose chemo medication. Chemo medications like 6mp, methotrexate, which I also take, and Imuran, are commonly given to treat “aggressive” Crohn’s disease. I use quotes around the word aggressive because I have yet to find someone with “easy” Crohn’s…I digress. Because Remicade is a chemo (although low dose) medication, it is usually given in a infusion center where other forms of chemo therapy is given. So, it is common to find myself surrounded by Cancer warriors while I take my Remicade infusion. 

One of the neat things about taking my infusion with Cancer warriors is that it tends to help me keep this disease in perspective. It is always a reality check for me when I find myself feeling particularly low. Yes friends, I have those days too. Now, let me be clear. Crohn’s disease is a HORRIBLE, ABSOLUTELY TERRIBLE DISEASE, but somewhere along the way I decided it was not as bad as cancer. Oddly enough though, a Cancer warrior reminded me recently of why people battling chronic illness and pain should not look at other illnesses as a way to stop themselves from feeling bad about their illness…. 

At my recent infusion I was placed in a pod next to Amy, a breast Cancer warrior. When I walked to my recliner to be savagely poked (because my veins are awful and I am always stuck 5 or more times) for my iv to receive my infusion, I noticed her laying back in her recliner with her eyes closed but a BIG smile on her face. Confused as to why she seemed so happy, I could not help but stare at her. Awkwardly, she opened her eyes and caught my shocked gaze. Startled, I immediately diverted my eyes to the floor. Unnerved, Amy said “hey there, how you doing. I’m Amy?” I quietly replied, “pretty good”, while gazing at the floor and positioning myself in the recliner next to her. Amy slowly pulled the lever on her recliner to bring the head of the chair completely up and asked me my name. Upset that I would now potentially spend my infusion talking with a stranger, (I was looking forward to my graham crackers and the smooth sounds of Whitney Houston pre-drugs, as I drifted off to sleep), I curtly replied “oh, it doesn’t matter. I didn’t mean to disturb you, I just saw you smiling and it caught my attention. But, you can rest.” 

Amy sat on the edge of her seat and said “I’ve seen you come here for a year now. But today is my last day. My last chemo treatment…I kicked Cancer’s ass. I can’t wait for the bell!” I immediately got a big smile and replied, “oh my, congrats. That is amazing. Way to kick Cancer’s ass.” I then asked “wait, what bell.” Amy then proceeded to explain to me how the infusion center rings a bell when Cancer patients complete their last chemo treatment. Excited, she then asked “so, when is bell day for you.” Suddenly saddened and confused, I softly replied, “I only have Crohn’s, I don’t get a bell.”  

Immediately it became clear to Amy what had transpired, although I was still clueless at this point. Amy realized that only people that complete treatment get the bell…for crohnies and other types of auto-immune disorders that will never happen. Amy quickly stood up, walked over to my recliner, kneeled down and said, “oh dear, I am so sorry.” Confused as to why this stranger felt the need to comfort me, when I am SO not the “comfort me type”, I sharply replied, “lady it’s fine. It’s not Cancer…ya know. You beat Cancer, honey this is a small battle.” Amy stood up and said “no, no honey. Don’t do that. See, you have Crohn’s. It is not Cancer, but unlike Cancer, you have no end.” As Amy talked, I processed her words and tears involuntarily began to flow out of my eyes and down my cheeks. Her last two words echoed in my ears…”no end.” While this is something I’ve known conceptually, I have never given much thought to it. As she continued talking, I couldn’t stop the tears and her words suddenly seemed far away. Amy clearly noticed that my mind had run away, so she softly grabbed my hand and said “don’t ever use Cancer or any disease as a reminder to be grateful because it could be worse. Each illness is its own personal hell…for one reason or another. My battle ended in a victory, but you are fighting a battle that can’t yet be won on this earth. It was not my intent to remind you of that. I just assumed everyone here got a bell. Since you were here when I started, I assumed your time was coming since my was.” Friends, this was the first time this truth ever hit me.

I have watched the infusion center staff ring bells for people almost each infusion for several years, and never gave a thought that I would not have that. But suddenly friends, I needed to hear someone ring a bell for me. I wanted to hear my name and the ringing bell so badly it hurt. My mind raced as I envisioned what that would feel like…to see people stand and applaud and wish me well to live my life Crohn’s and Remicade free. But then, I grounded myself with a simple “that’s just not the way this works.”

Now, let me be fair to Amy. She did not come pee on my parade, make me cry, then happily run off. We talked the rest of my 4 hour infusion, and laughed. While we can pick apart Amy’s behavior in an effort to find flaws…I choose not to. I choose to find the real message in her words. Friends, Amy was right. Until there is a cure, my battle with Crohn’s only ends when I end. Think about that for a second. There will never be a celebratory bell rung in my honor to signal an end to my Remicade or other treatments. The end to my Remicade means my disease has progressed and requires something different, or my body has developed antibodies against the Remicade and it is time to move on to another medicine…neither of which is a good thing. This is a truth I refused to allow myself to process because I was so busy being grateful my illness was not something worse. Crazy right?

Friends, we have to stop comparing our illness or using one illness to feel better about another. As odd as it sounds, we have all likely done it at some point. We also have to be mindful of those around us. We are all warriors fighting a battle. While the battles may be different, and “victory” may come in different forms, never forget that others around you are fighting. So, all you Warriors that get a bell…enjoy it. Seriously, it sounds like sarcasm but I assure you I am being sincere. Enjoy it for yourself and your fellow Warriors that will never have their own. 


7 thoughts on “None For Me

  1. I have Ankylosing Spondylitis, yeah I hadn’t heard of it either until my diagnosis!
    I just found out that I will begin Remicade infusions. I’ve been searching the web for (real) info; not the stats from the manufacturer or medical professionals. REAL info from people in the chair! I’ve done a couple of injection meds in addition to my Methotrexate, with no lasting success.
    Thank you for this beautiful word picture. Your words resonated in my guts and put in perspective something that seemed out of balance. I too, had the same perspective as you. “At least it’s not cancer”. I’m certain that is the opinion of many. Thank you for speaking truth. Speaking the reality and the gravity of autoimmune disease treatment.
    Blessings to you as you continue to warrior on! ❤️👊🏻
    #iwantamadafackingbell

    Liked by 1 person

    1. Thank you so much for your words fellow warrior. I am so happy my journey continues to help others. Just when I wonder if I should continue blogging…I get a notification like this that confirms I should. I have been getting Remicade infusions for 5 years now and on methotrexate injections weekly for 3 years or so. I can definitely tell you my thoughts but both have been a God send for me.

      Liked by 1 person

  2. One of my doctors told me early on that my diagnosis was as serious as cancer, but the difference was that some cancers could be cured. Major reality check, and a huge shock to process. Sick, with no end in sight. I’m with you. I want a bell, dammit!!

    Hugs!

    Liked by 1 person

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