When a Community Comes Together – Experiences from Retreat Migraine 2021

Hello Readers. I’m happy to bring you a break from our regular programming. This is an article by Ronetta Stokes of our Diversity, Equity and Inclusion Council, about her experience at 2021’s Retreat Migraine. When people come together, like the migraine community did here, it gives patients, caregivers, providers, researchers the energy to keep working towards solutions by feeding the heart, mind, and soul. Here’s Ronetta….

“Some – times in our lives / We all have pain / We all have sorrow….”

While attending Retreat Migraine in person these words resonated with me. “We all have pain, we all have sorrow”.

The weekend brought together a community of people living with or caring for someone with this invisible disease called migraine. I was able to attend and be a speaker while soaking up knowledge, advocacy, and strength.

THURSDAY 10/14/21

I attended the ECHO (education council for headache online) dinner Thursday night while meeting some old and making new friends. Looking forward to the upcoming projects they have laid out.

FRIDAY 10/15/21

The following afternoon I registered and got my welcome bag full of goodies. I listened to two community stories from great advocates. Shortly afterwards I attended a session called Migraine at Work & Work Migraine (featuring Tom Dabertin & Kellie Pokrifka). This session discussed how much work is missed and the decrease in productivity. 

Moving on to yoga (by Adriane Dellorco) something I haven’t done in years. Lastly the dinner, which is where I saw strength in numbers. Witnessing all advocates in one area; powerful.

SATURDAY 10/16/21

I couldn’t wait to get started on Saturday events which was a morning walk with CHAMP Executive Director Kevin Lenaburg which gave views of the beautiful Pacific Ocean. My next session was a support group. We got to share our stories and hear other stories. What a remarkable group of people. 

After that, I had to take a much-needed break to rest. Once I was able to go back, I went to the green light room and I was able to try a lotus mat, some coloring, and more relaxation. There was a room dedicated to new migraine devices. I was able to chat with the vendors and try on these devices to bring information back to my migraine specialist. 

Allie Sealey

Lastly, we ended the night was a pajama party. We laughed, played bingo, and enjoyed a special appearance by country singer Allie Sealey who put her migraine into a song. This song still plays in my head.

What a great and exhausting day and night!

SUNDAY 10/17/21

Sunday, we had another morning walk, this one for Miles for Migraine. While on this walk, I got the privilege to walk and talk with Dr. Bill Young. I went to Dr. Young’s session on treatment updates. Research and awareness are finally being brought into the light, out from the darkness.

There was a giveaway bonanza. So many gifts lined up, from lamps, weighted blankets, and so much more. Once your number is called you get pick a gift.  I was able to get a lotus mat. 

Shortly after was time for me to share my community story. Anxiety started to kick in as I approached the stage. I looked out, and instead of strangers, I saw family. Once I was finished, I was greeted and thanked by so many for sharing my migraine journey. Amanda Chase was there to share her story as well.

I’m thankful, grateful, and blessed beyond measure.

What the Migraine Community had to say

I posted a question in my social media asking for one word to describe the weekend:

  • Community
  • Inspiring
  • Validation
  • Hopeful
  • Eileen! (as in Eileen Brewer, the Director of RetreatMigraine)
  • Empowering

These were to top but there were so many more words to describe RetreatMigraine. 

I’m thankful to Eileen, CHAMP, the vendors, everyone who made this event possible. Looking forward to the 2022 experience in Charlotte, North Carolina. 

Resources:

The Coalition for Headache And Migraine Patients (CHAMP)

Time to Accept the Truth – Migraine is not a Headache – by Morgan Fitzgerald for Patients Rising

Approaching Your Employer About Your Migraine – Ashley Halsey for Patients Rising


Ronetta Stokes

Ronetta is a case management associate for an inpatient behavioral health unit. She also has chronic daily migraine attacks with and without aura. Ronetta started advocating for migraines in 2019 and has since been awarded a proclamation in 2020 from the Mayor of Bristol, Connecticut for her tireless efforts during Chronic Migraine Awareness Month. She was also recently interviewed by Healthline where she discussed the diversity amongst women of color in the migraine community. Ronetta loves elephants with their trunk up – it means good luck. She’s got a room full of them. 

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