In the spring of 2013, as a Creative Writing Major, for my senior thesis I got to write any type of creative piece of my choosing. I chose to write a memoir. A memoir reflecting on my diagnosis of NF2-Related Schwannomatosis and how I overcame the difficulty of going from training to being a professional ballerina, discovering a very large tumor in my lower spine, to finally finding the strength to walk again after being stuck in a wheelchair post-surgery. It’s a story I’ve always been told I needed to share with the world. That my life is an inspiration to others.
The problem was, 7 years after my diagnosis, I was far from ready to reflect on everything. During that time, I developed a detachment towards everything that had happened to me. I became depressed and didn’t care if I died. Most importantly, it made me question:
How can I advise people to be strong and believe in themselves when I’m still struggling to accept my own diagnosis?
Here is the story of how I figured that out:
Day 1
“Have you ever had an incident like this before?” (And by incident she means suicide attempt)
“When I was 16 I tried to drown myself in the bathtub with oxycodone.” I admit.
“How many did you take?” Donna’s pen continued to scribble across the paper.
“None.” Her pen stopped. “I was too chicken to go through with it.”
Her pen started scribbling again, confirming that she heard me.
It was my first day of The Partial Program, a.k.a. group therapy, Monday through Friday, 9am to 3pm. An outpatient program that supposedly will help. I’m hesitant, but it’s only the first day and when asked how it went, the most I can say is: Slightly optimistic.
A feeling, not a description. I couldn’t have just said fine? Oh well, might as well go with it.
I wasn’t surprised by the number of people in the room. It seems life these days is hard on everyone, and no matter the age, there are still people struggling with their lives. It makes me wonder if I’ll ever get a handle on things.
Day 2
Maggie led the wrap-up today. She’s a sweet woman, with a comforting mousey voice that always sounds genuine.
“What about you, Bob?” She asked. “What are you doing this evening?”
Bob’s nice. He showed me to the cafeteria the first day. He was also the first to say that it was amazing that I’m in the program without sounding rehearsed. Bob is a recovering alcoholic. He regrets doing a lot of things and is having trouble forgiving himself. I don’t know what he did specifically, and even if I did, it wouldn’t change how I think of him.
“Well, I’m going to try and eat with my family.” He replies.
“Do you know what you’re eating?” I could tell Maggie really wanted to know.
“Nope, not yet. Hope it’s good though.”
Some of us chuckle. Others just crack a smile.
“I hope it’s good too!” Maggie adds. “Do you feel safe today?”
The laughter stops.
Safe. “Do you feel safe?” – A heavy question that we all felt. And although it was only a couple of seconds for Bob to respond, it felt like time stopped.
Did I feel safe?
I suppose I did.
“Yeah, I feel safe.” Bob replies. “I feel good too.”
His answer confirmed it. I felt safe.
Day 6
Mom came to visit today. I think I needed the visit. It was–I don’t know what it was, but it wasn’t happy. She had this look on her face. It was the same look she had when we discovered the first tumor… and the second tumor… and the brain tumors.
It was a look that said: I want to take all of your problems away and make everything better. Which I know for certain if she could have she would have. I told her I want to continue going to Group. It’s helping me exist in the outside world.
I think my mom has trouble accepting — no, that’s not quite right… dealing– yes dealing– with something else wrong with me. After I was diagnosed with NF2-Related Schwannomatosis, a genetic disorder that causes tumors to grow throughout the body, I can tell she doesn’t quite know how to talk to me. Especially now that my depression has come out of hiding and started wreaking havoc in my everyday life.
It’s like she wants it to be ‘x’ number of days into the future, where I’m no longer suicidal and my depression is back in hibernation. She speaks of the future and all my possibilities after I graduate from college in a couple of months, but I don’t want to think about that. Thinking of the future is what got me here. It’s what made having NF so life shattering.
I would love to go to that ‘x’ day in the future, and see how happy I really am. But in order for the ‘x’ to even exist I have to deal with the now, even if my mom is having trouble.
Day 8
Shannon, a clinician I have never seen before, led the group topic of ‘tossing’ old baggage away. According to the handout she gave us, old baggage are issues from the past which cannot be changed and consume energy that should be used for self improvement.
One problem though.
My issues are from the present and will be my future. My body will always produce tumors, and I probably will be deaf in ‘x’ amount of years.
She had us write down three issues in our life that we consider to be baggage and then write a letter to a friend as though our baggage was theirs instead.
- Inadequacy and fear of being alone because of my diagnosis. I’m hesitant about relationships. Who would want to commit to someone going through all that I potentially will?
- Guilty for making my mom think she failed at raising me.
- Hatred towards myself for letting my mom think she failed as a parent.
Dear Friend,
Why do you think you’ll be alone? You are surrounded by people who love you and care about you. And if someone can’t accept your medical situation then they’re not worthy of being with you. You will find someone who will cherish you and be by your side through every surgery, and even learn sign language just for you. You will find him.
The only way your mom will know she didn’t fail is if you tell her. Holding on to your thoughts and feelings hasn’t worked in the past, so why would it work now? Only good came from you expressing your feelings and letting people in. Stop trying to take on the world all alone. Just let people in and accept the love that surrounds you.
Love, (Because you are loved)
The person who remembered she didn’t want to die.
Day 10
I felt giddy today. I think it has to do with being my last day of group therapy. A lot of people have ‘graduated’ this week. (Graduation: at the end of your final group, we go around the room and say something nice about the person leaving, and then they pick a spirit rock from a basket that holds the group’s positive energy. Each rock has a positive word painted on it.)
It’s weird when people leave. The next day always feels like they were never there, and new people come in to take their place. I wonder who will take my seat when I’m gone.
Instead of meeting with my usual clinician, I talked with Beth. Beth is an older woman who seemed curious about me. I don’t know why she was curious. Maybe it just had to do with my not being one of her regular patients. (A question I never get answered).
I told her my life story. All the way from how I got here, through the surgeries, the rounds of chemo, being diagnosed with NF, back to high school when I learned how to walk again, and even as far back to when I was 9 years old and decided I was going to be a professional ballerina. As I was telling my story to Beth, I realized something. I finally saw where I went wrong, and how blind I was for not seeing it before. I’m still here, in this world, existing despite the tumors.
I kept trying to write my memoir as though everything was perfect and fine. I thought people saw me as strong for overcoming everything and it was all in the past. When in reality, it was because I kept going even though this was my future. I inspired people to be strong and believe in themselves because I’m still struggling to accept my own disease.
I turned my spirit rock over in my hand. Hope was written on it.
Day 21
It’s my last day of spring break. Mom woke me up early to spend time with her before I left. It was a bittersweet day. I was happy being home and out of group therapy, but I was nervous about classes. I haven’t gone in 3 weeks. And while eating breakfast I realized the next time I’ll be home, I’ll be a college graduate. A college graduate who doesn’t have a clue about the future.
“Well, I’m all packed.” I said standing next to my mom in the driveway looking at my car.
“Please call to let me know where you are and when you get there.”
“Yeah, yeah, yeah. I know. Stop being such a mom.” I smiled as she pulled me into a tight hug.
“I’m really proud of you. I hope you know that.” She said, still hugging me.
“I know.” I hugged her tighter.
“And don’t worry about graduation. You’ll live at home, you’ll get a job, and earn enough money to get started with whatever you decide to do.”
“I’m going to live at home forever and ever. Don’t you worry!” I replied, finally letting go of her.
“No, you won’t.” She looked at me differently at that moment. As though I were 9 years old and aged right before her eyes. “You’ll be gone within the year.”
“I love you.” I said getting into my car.
“I love you too.” She replied.
Before I pulled out of the driveway, I rolled down my window.
“Bye Mumzy!” I yelled out the window waving like a little kid.
“Drive safe, you twit!” She waved back.
I could hear a faint “And get the pink out of your hair!” as my window rolled up and I left towards school for the final time.
I don’t know where life will take me, but I’m certain:
- My body will always produce tumors
- Life was never meant to be easy
- Family will always be there.
- “The only way to stay sane is to go a little crazy” – Susanna Keysen
- There is good in the world, even if it’s sometimes hard to see.
- Certainty isn’t everything.
- I don’t want to die.
Present Day-
It took me another 9 years to build the confidence to share my story with the world, and it couldn’t have happened at a better time. I was lucky enough to have my NF stay stable for as long as it did, but in 2022 everything changed. My right vestibular schwannoma tumor got too big and I needed to go on another drug trial. On day one of the trial, I opened my phone camera and pressed record. I shared everyday of the trial online. Documented all the highs and the lows.
Even after the trial ended, and ultimately failed, I continued to document my journey. From running my first marathon, to brain surgery, coping with being deaf in one ear, as well as facial paralysis. My hope is for others to see that our lives don’t have to be bound by a diagnosis. I want to show the world what NF is and that living with it is just as fulfilling as any other life.
