I have a friend who is so wonderful, so unique, so artistic and so talented she defies description (you should follow her artistry, recipes and design on Instagram). She is a core member of my village and has been with me every step of the way on this HSCT journey.
Marcella, pronounced MAR-CHELL-UH, and I have been friends since we met in undergrad. But we fell in love when we traveled abroad and studied in London together. Our fate of life-long friends was sealed more than twenty years ago.
We share another bond, we both have MS and were diagnosed within the same year. She’s been my go-to call when I don’t want to explain how I’m feeling or to cry, rail, be angry, be confused. I asked her what this experience has been like for her as I underwent treatment and she supports me from the other side of the country.
I always wonder how she is, but everything I’m doing has direct and immediate impact on her life too.
In the thick of it
I hadn’t heard from Carolyn in days; I knew she was at rock bottom. Numbers as low as the doctors could get them so her body could begin again. A clean slate. A fresh start.
The stakes were high. Death was certainly there, sitting at the table… but across from it? Across from death was the possibility of a life without MS, a cure. Sitting there next to death was hope. Glowing brightly, lighting the path of a future. Carolyn was in a fight for her life.
She wasn’t fighting for the life she had been living. No, that old life sat on a shelf. She had walked away from it. The path lit by hope was a new one. A life without fatigue; without infusions, drug cocktails, walking devices, despair, worry, anxiety or depression. A life I know well because, I too am living it.
Carolyn was there from the beginning. She was who I called when I couldn’t feel my legs anymore. When the tingling of nerves had finally ceased and all I felt was nothing; heavy flesh hanging from heavy bones. Legs which, that very morning, had pirouetted across a huge room filled with mirrors, now lay dead as the doctor pricked them with needles, tickling them with safety pins. I didn’t know what was happening, neither did Carolyn, but she stayed with me for days, holding my hand, sleeping with her head on the edge of my bed. We recited lines from Shakespeare back and forth to keep the pain and the fear at bay. Carolyn and I weren’t the only ones without answers. I would wait for 10 years to be given a diagnosis. The shocking turn of events? Months before finally being told I had Multiple Sclerosis, Carolyn found herself in a hospital room receiving the same diagnosis.
One step apart
Though I had been living with MS for a decade without knowing, Carolyn was now ahead of me. We stepped slightly out of sync for the next decade. She would try a drug and I would be put on it a month later. The tears, the phone calls, the false “cures”, the notes, the articles, the studies; each passed between us like other friends pass gossip about reality shows. Our friendship was never mundane, even before chronic illness. We had traveled the world together. Graduated with degrees in performance and moved to big cities, worked exciting jobs, dated, adventured. Staying close each step along the way. We didn’t need to share a diagnosis to bring us closer, but how could it not? We speak the same slang, use the same shorthand, have felt things so odd that they defy description, but we know; we both know. We know the fear, the embarrassment, the crippling fatigue, the worry, the overwhelming sadness of a future stolen.
A shared experience
I can say without a doubt that sharing this journey with her has helped me stay on earth. The personal loss has been profound over the years. Mobility, vision, passion, energy, hope; they have all been extinguished slowly. MS has been a smoldering forest fire in my life; never extinguished. Maybe you falsely believe it’s dormant, but just like that it ignites again, clearing anything in its path. Sometimes there is regrowth, other times, tragically, there is not. The rollercoaster of loss, the constant battle to just stop the progression is endless and exhausting. Friends and family have certainly attempted to be there, some with more success than others. There is no comparison to a companion who is also on the battlefield. A “sister in arms”.
Now my dear friend lies in wait as her immune system rebuilds. I’ve been sending her video messages, “content” we call it. We both know, in battle sometimes the only place your brain feels safe is with a friend. In lieu of that, staring at a wall can be your only escape; tuning out and turning off. She didn’t have the strength to respond, but I knew what she was thinking. She was willing herself to live. She has been given a second chance at life. She wasn’t going anywhere without a fight. Holy hell, did she fight. She’s only two weeks post stem cell transplant and her numbers are in the “normal” range. Tell me that’s not one badass warrior.
Carolyn is still ahead of me, being only the 10th individual who has had this procedure at Cleveland Clinic. It’s hard to pen my feelings on it. When I first heard the news, I jumped out of my skin with excitement. There were others who would be fearful, but me? I could barely wait for her to start. I knew what this had the possibility to do for her life, I had been reading about it for years. Now, here she was, standing in front of me with a golden ticket! I can’t wait to see it all. To hear the stories, to see the change, to witness her taking her life back. To be by her side as she navigates this new gift. Yes, there are still battles to wage. Yes, there will be loss that may not heal, scars she will live with on her brain and spine, but she has been given a second chance at a life without MS.
Feeling all my feelings
With all this joy for her, I would be remiss if I didn’t express that it’s a bit hard too. It’s hard not to feel left behind. Like those other grandparents in Charlie and the Chocolate Factory. Over the moon to watch Grandpa Joe dance off to a new future but, still stuck in bed. Do we ever find out what becomes of them once Charlie gets the keys to the factory? I’m holding on to a bit of hope for our unknown ending.
Maybe one day I too will live without MS. Maybe one day Carolyn and I will sit around a table clinking glasses of champagne, hair silver and eyes wizened, slurping oysters as we recall those battles we waged, the fires now extinguished, dancing down a path together lit by hope and filled with dreams.