The Fellowship of the Afflicted

It took me awhile to come up with this title. I’ve been doing a fair amount of thinking back to my time spent in the infusion room. The room where I received more Arsenic than a gal should ever take. I went to that room, every weekday, for weeks on end, to receive treatment for my acute leukemia. The nursing staff and oncologists remained the same, but there was never a day that I was in that room with the exact same patients. Every day we created a unique time and space where, though we would most likely have never met in this life, we all became members of an organization which I like to call The Fellowship of the Afflicted.

Here are some other variations I thought about before giving the title that you see above – Fellowship of the…

Sick (nope, that word carries too much negative connotation).

Dying (definitely not, that’s too hard to hear let alone read).

Fighters against That Which Shall Not Be Named (I get it, but not everyone is a Potterhead, so I’ll shelve that for another day).

Champions (I like this one, but I have more than one cancer friend who HATE being called a champion).

Survivors (I LOVE this one, and since Cancer Survivor Day is coming up, sounds practical).

At the end of the day I chose to use the title I had given this group of humans many years ago, “The Fellowship of the Afflicted.” Tolkien is a master at his word craft so I just tweaked one of his masterpieces to fit my own imaginative sayings.

My time spent living in the hospital was intense and is the most difficult part of my story, both the living of it and the re-living of it. My human connection there was limited and I rarely saw anyone whose face wasn’t covered with a mask. When it was time, I was released back into the wild and it was unsettling. It was another “new normal” to adapt to and I missed the beeping from the machines and the constant visits from my medical team. I had left the loud, scary, poisonous, comforting, healing and commaradariness of the 7th floor and had to embark into the new world of daily trips to the infusion room.

The infusion room was where I reported every weekday morning, had some blood drawn for labs to make sure I was “healthy” enough to receive treatment, then was loaded up with poison and sent home to get some sleep before returning and doing it all over again the next day. Trust me, it was much less fun than it sounds. Every Monday I came in fresh with energy from 2 days off of chemo (think turtle on Ambien), some sleep (if I was lucky even 4 hours of sleep over those 2 days), a comfy blanket that was hand-sewn by dear friends, and my portable DVD player with a copy of the timeless classic,’ Arsenic and Old Lace.’ Yes, my friends, as I was willingly putting bag after bag of Arsenic into my body I would curl up, put on some headphones and laugh my way through Monday. (Christmas that year I gave a copy of ‘Arsenic and Old Lace’ to my oncologist. It was a big hit.)

On any given Monday, while I was laughing my way through arsenic treatments, there were others who were crying, or were angry, or were still in shock, or… fill in any number of emotions and I saw them in that infusion room. Actually, I felt them myself in that infusion room. It wasn’t just another room in the cancer center, it was where we met as members of The Fellowship of the Afflicted.

In that room there was no judgement, because we all got it. We understood each other and allowed the space for everyone to feel what needed to be felt. Some days we talked among ourselves and other days the room was filled with a heavy silence. Some days we rejoiced with the patient who celebrated the last day of treatment while other days we wept for a member who was no longer with us. One of the days I remember clearly was a quiet day and we could hear small, stifled sobs. We each looked around to see who needed a comforting glance or a fellow member to bring his/her own IV pole to sit next to, but it was not obvious until a small, quivering voice said, “When will you get your… you know… medicine?” I looked over as the lady next to me, who then completely drew back the small curtain barrier between us asked again, “I noticed that you are still getting regular saline – when will you get your… medicine?” I immediately understood, as did those in the Fellowship.

The young woman, mid-20’s, was receiving her first dose, and was feeling very much alone, and yet she still bravely reached out. Her simple question changed the entire room that day, and that one question began a day I will never forget. She asked when I would start my… medicine. I turned my balding-head, wrapped-in-a-blanket, shivering self to her and replied, “I’ve already started, but they give me the boring clear stuff. What kind do you have?” She smiled, looked up at one of the many bags of fluids on her IV pole and, while her eyes followed one line from the pole to her chest said, “I get the pretty blue stuff. I’d hate to have boring.”

Everyone laughed. Everyone cried. Everyone took turns talking about their “medicine” in terms of color, frequency needed and the “lovely” side affects. We talked about so much more than chemo that day, but we didn’t do so with the spoken word. We communicated love, compassion and hope with the subtext, with smiles, with nods, with sighs, laughter and tears. We were in this Fellowship, and though none of us wanted to be a member, we were thankful for the membership.

That day taught me so much! I’m never alone, though I sometimes feel lonely. Every day and every situation we are with a different and unique group of humans and therefore create our own type of magic that can never be repeated. What type of magic is up to us. I may not feel exactly what someone else is feeling in a single moment, but I can show compassion… I don’t have to “feel it to understand it.” I may have days when I need to be quiet instead of my sarcastic self, and that’s ok. During sad days I may need to laugh out loud, and that’s ok, too. I can experience different emotions at the same time: fear/faith, loss/grace, love/hate, sadness/laughter. Life is so much more about “and” than “or.”

We all have a Fellowship. We all have experienced some type of affliction. We are complex people who are at varying stages in this messy, beautiful chronic condition called life. When I am fortunate enough to come across someone who has been a member of my Fellowship longer than I, I find myself wanting to learn as much as possible from their journey. Isn’t that what makes this life, this membership, sweeter? We learn, grow, realize, feel, hope, change and begin to more freely express empathy and compassion.

Perhaps a better title would have been, “The Fellowship of the Circle.” Tolkien – the man was a genius.