Finding your voice with Crohn’s: How music helps Anna Tope cope

Songwriting has been a coping outlet for 22-year-old Anna Tope, for as long as she can remember. When she was diagnosed with Crohn’s disease in June 2019, she worried if her aspirations of sharing music with the world would be silenced. COVID-19 hit during her final semester at York College of Pennsylvania. She looked forward to and worked hard for her senior recital all four years. The event was scheduled for March 13th, right when the world started to shut down. IMG_6972

Luckily, the music faculty were able to work things out and held the recital before campus had to be cleared out. Anna gave the best performance she ever had. The whole audience was on their feet, followed by a huge line of people waiting to greet her afterwards. The moment was a dream come true. Check out her recital performance here.

The song inspired by Crohn’s

“My favorite part was being able to end my recital with a song that I wrote about my Crohn’s Disease journey called “Renewed.” This is a song that has moved people to tears, and people have told me how much the song has impacted them, especially during the pandemic,” said Anna.

Anna wrote “Renewed” in January 2020, while sitting at a Barnes & Noble. Click here to listen to the song.

She says quarantine has enabled her to focus more on creating music and writing.

“My songwriting is essentially reflecting through some of the hardest times of my life, such as my illness/diagnosis, but also showing how my hardships have been so eye opening and influential,” says Anna.

Finding joy through the suffering

Anna’s main goal with her music is to bring joy and hope to those suffering from chronic illness. The unpredictability of Crohn’s often leaves Anna feeling worried about whether IBD is going to rob her of her musical dreams, but not only that—like many of us, she worries about her future. Two of her biggest fears are finding love and being able to have kids one day. Ann is incredibly grateful for her amazing support system and how her friends and family have rallied around her since diagnosis.image0 (1)

She wants to use her voice, energy, and the broken parts of her experience to bring comfort to those who feel alone.

“IBD has impacted me in so many ways. It’s turned my life upside down, but at the same time it’s given me even more of a passion to sing and to help others.”

Use quarantine to your advantage

Living with a chronic illness in the middle of the pandemic is complicated and challenging, but Anna hopes others use this time to explore their talents and see beyond their IBD. IMG_6121

“Go write some songs or poetry. If you want to learn an instrument, now is the time! Go write that book you’ve been wanting to start. Do whatever brings you a feeling of accomplishment, joy, and comfort.”

The success of Anna’s senior recital pushed her to continue writing. At a time when many of us feel tapped energy wise—mentally, physically, and emotionally, try and find what motivates you outside of your illness. And like Anna, you’ll see, while IBD may change the course of the path you’re on and re-direct you for a bit, just because you have Crohn’s, doesn’t mean you can’t follow your dreams.

Connect with Anna

Instagram: @myvoice.myjourney

Facebook: Anna Tope Music

Twitter: @annatope_

YouTube: Music and Covers

 

 

Growing through the grief of COVID-19: Love, A mom with daughters recently diagnosed with Crohn’s

Life was much different for Michelle Manasseh and her family of Orange County, California, one year ago. For starters, her daughters had not been diagnosed with IBD and we weren’t living in the middle of a global pandemic. This week, Michelle shares what it’s like being a parent of two kids newly diagnosed with Crohn’s Disease, while trying to navigate everything that is COVID-19.

It hasn’t even been nine months since Eve (age 11) and Ruthie (age 9), BOTH of our kids, were diagnosed with Crohn’s, and BOOM—COVID-19 happens! So yeah, let’s pile pandemic on top of chronic illness, on top of school being cancelled indefinitely, on top of no contact with any. other. human. soul. for. weeks. on. end. What do we call this? Grief. 5EEF5B29-5EB9-407F-9154-F708F04B5F38

There’s no other name for it. Our whole culture is grieving. One important lesson that the kids’ diagnosis has taught me is how to grieve. And I mean how to really grieve. Parents of kids with IBD know a thing or two about grief. We went through it when our kid was diagnosed, when the next kid was diagnosed, when the flare hit, when the medication changed, when the game plan failed. It comes in waves and it comes out of nowhere.

Our culture has taught us to numb and distract – don’t do it! Don’t miss the chance to be refined by the pandemic fire. Yeah, it’s uncomfortable, but we need to let ourselves feel emotions so we can come through this with true peace and wisdom. If we avoid the fire or pretend it isn’t there, we are doing ourselves – and our kids – a disservice. We need to teach them that grieving is normal and ok. It’s ok to cry. It’s ok to be angry. It’s ok to be sad. We need to remind them that we are all feeling the same things and we will get through it together.

We can’t fix this

Something I realized pretty quickly after my girls were diagnosed with Crohn’s Disease is that I couldn’t fix it. There wasn’t a single special diet, mix of herbs, supplements, exercise, tincture, oil, weed, seed, handstand, or flip that could fix it. And this was a painful truth to learn. As a parent, our natural instinct is to fix things for our kids. We’re stocked with band aids, kisses, and unsolicited advice.

Crohn’s is beyond my control. This has been very humbling for me. Likewise, COVID-19 is humbling our culture. I think it’s revealing a huge blind spot. With the rise of self-proclaimed health experts and medical misinformation circulating broadly across our connected culture, people have believed that they can fix all their own medical problems. Now that blindness is obvious. Just as IBD is not a stomach ache, COVID-19 is not a common cold. We can’t fix it. People are feeling helpless and turning to doctors in desperation. I hope a silver lining is that it invigorates the medical profession and brings to our culture a profound respect for doctors, nurses, and all healthcare workers.

Uncertainty illuminates

For the first time in several decades, the whole world is living under a bleak cloud of uncertainty because of COVID-19. A similar dark cloud rolled over our home last summer when Eve and Ruthie were diagnosed with Crohn’s. I learned that with great uncertainty comes deep discomfort. It forces us down tunnels of self-examination, to take stock of our lives and our purpose. It illuminates our utter dependence on God.

Crisis also has a way of illuminating our deep-seated motivations. Who are we seeing on TV and across social media lately? People with the purest motivations. Doctors. Actors reading sonnets and bedtime stories. Public officials creating guidelines to protect us. Musicians playing across balconies. This is a great teaching moment for our kids. Become a financial advisor to help people. Be a writer to reveal truth. An artist to bring joy. A doctor to bring healing. A musician to bring beauty. An actor to tell stories that need to be told.

What can we do?

Parents – we are navigating a global pandemic with immunosuppressed kids with chronic illness. Let’s be honest, we have massive fears. I had to bring Eve in for an MRI two weeks ago. In my mind, the machine was basically a plastic tube crawling with yellow spindly germs. Never mind a mask – why didn’t someone plastic wrap my child?!? IMG_8604

We are dealing with a heck of a lot, and none of us is perfect. I’m quite certain that my kids will never again ask to be home schooled. The main skill we’ve mastered so far is how to do a Zoom conference while driving to infusions! On Friday night I sipped wine while the girls smeared Nutella on crackers after eating only half of their dinner. Two days later I inadvertently put Eve’s daily Miralax in Ruthie’s water bottle. (Oh gosh, is she flaring!?!) I, for one, would relish a shirt that says “WORK IN PROGRESS” printed in bold neon letters.

No, we aren’t perfect, but we do have something to give. We have a unique perspective and experience. We can be a voice. More importantly, we can be an ear—for our kids and for others. Call a friend and listen. Tell people the good things you’re thinking about them. Tell them you love them. And very importantly, take the time to thank your kids’ teachers, doctors, and nurses for all they have done and continue to do—they are real life heroes.