Friday, July 17, 2020

In Loving Memory of Jenn Tingwald

My dear friend, Jenn Tingwald, passed away unexpectedly on July 2nd.

I’ve been experiencing the full spectrum of grief. I have tried turning to writing, as it’s always been how I process my emotions and experiences. As I’ve found, though, words are often insufficient to express the fullness of universal human experiences… including, grief. This may be a long, bumpy post; but, I want to share some things I’ve written since I heard the news of Jenn’s passing. 

Words in the Moment 
Today, I found out that Jenn Tingwald passed away last night. I don’t know how those words together can be true. I can’t wrap my mind around it. I know that she was in and out of the hospital a lot over the past few months, but how is she gone? When I read of her passing, my heart broke and my body collapsed. We messaged earlier this week. She wasn’t well, but she was a warrior… like she always was. 

How do I even find the words to describe what I’m feeling? 
I’ve lost people in my life, from drifting away to death. 
This loss is different than others. 
Of course, it hurt badly when my grandparents passed, but they were ill for years beforehand. There was much grieving, sometimes for years, as there were a series of losses before the final one. 
This was different. 
This was completely unexpected. 
Jenn had a lot of health challenges, but she always made it through… until she didn’t. 

I know that grief is a process. I know that the waves will continue to come. Waves of disbelief, sorrow, overwhelm. The waves will vary in size and frequency, but they will continue. 

Today, it’s waves of disbelief and overwhelm. I can’t grasp it, and then it swallows me. It’s such a difficult part of being human. All day, I’ve sobbed and keep saying, “I don’t understand.” 

I know that a lot of things I do will remind me of her, as we shared so many ups and downs together. Living with chronic pain (struggles, successes, treatments, disability, etc), Mayo Clinic, advocacy work (including, Headache on the Hill and Miles for Migraine). Right now, that seems overwhelming. I'm reminding myself that each of these is an opportunity to respond with gratitude for our friendship and move forward with courage and perseverance, knowing she's with me in spirit.

Every ounce of me knows that she’s finally out of pain and with our Lord. I know that I’ll carry her with me, as will the many others whose lives she touched during her time on earth. I’m grateful for all of that, truly. 

Letter to Jenn
My dear friend, 
It’s been a week since you passed. I’m still trying to wrap my mind around you not being here. My heart aches and tears continue to stream down my face as waves of sorrow and overwhelm wash over me. I’ve been thinking a lot about you, and about our interactions. 

I remember the first time I met you. We were at the final American Headache and Migraine Association conference in November 2017. We sat next to each other all morning, but neither of us spoke to one another because we were both managing a migraine attack and medication side effects. As we broke for lunch at the end of the conference, we started talking (my mind doesn’t remember clearly if we just started talking or if Dr. Starling introduced us). Either way, we learned each other’s names and chatted a little. Then, we connected through social media, and grew our friendship. I’m so grateful that we didn’t allow the opportunity to meet pass us by. 

You were the first local friend I made, after Jeremy and I moved to Phoenix. I didn’t know how I’d make local friends, given the limitations of this disease; but God crossed our paths and we became close friends quickly. 

Over the past couple years, we were open books with one another, allowing for a depthful connection that transcended the number of days we knew each other… 956 days. I cherish the conversations we shared about faith, advocacy, and the challenges and successes of living with chronic illness. 

You loved fiercely. I think that’s something we have in common. Your love for your family was unquestionable and second only to your love for God. I always enjoyed hearing stories and seeing pictures of your daughter. She is so precious, and I’m grateful that I was able to meet her in-person this March. 

Among other things, I will never forget your generosity and kindness. You always did your best to support and encourage me, despite the challenges you faced. Thank you for that. 

You made a difference in so many people's lives. Amongst the darkness of losing you, your light continues to shine. It's there in the lives you touched. It's undoubtedly you, and it's beautiful. 

It’s been two weeks since you passed. How can that be? My experience of time is warped. I want to tell you that it was such an honor being friends with you. Thank you for always encouraging me to simply be myself and reminding me to speak from my heart. What a beautiful gift. 
Goodbye, for now, my friend. 


I was asked to share an overview of Jenn's headache disorders advocacy:
Jenn Tingwald was a fierce advocate for the headache disorders community. She participated in Headache on the Hill multiple years, spoke at two Phoenix Miles for Migraine events, and was featured in a PBS Newshour special that aired in February. Jenn openly shared about her and her daughter’s experiences living with headache disorders, and highlighted the importance of finding your voice and reclaiming your purpose through advocacy.
Jenn’s husband, Aaron, generously provided an opportunity to share a short video with a story about Jenn. I have many, but the one that was on my heart perfectly displays the kind, generous spirit of my dear friend: 
Jenn and I met at a migraine advocacy event in fall 2017 and quickly became friends and fellow headache disorders advocates. Last year (2019), Jenn and I were going to room together for Headache on the Hill. A couple days before the training, she canceled her trip. She desperately wanted to go, but she needed to focus on her health. When a horrible migraine attack knocked me down after my travel day, she tried to coordinate getting heat pads and Epsom salt delivered to me. Despite the challenges she faced, she messaged me throughout my travels and the Headache on the Hill event. She told me she’d be with me in spirit, and I could feel her presence every step of the way. 
Jenn was one of the strongest, most kind-hearted people I’ve ever known. She was a fierce advocate, especially for her daughter. And, she was a faithful prayer warrior. She always encouraged me to be myself and speak from my heart, especially when she knew I was anxious. I know she’ll continue to be with me in spirit, and I’ll hear her voice reminding me, “You’re going to do amazing!” 
For anyone interested: 
“The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.” - Elizabeth Kubler-Ross and David Kessler

Sunday, June 21, 2020

Shades for Migraine 2020

Today, June 21, is Migraine Solidarity Day (aka, Shades for Migraine).

Shades for Migraine is a global campaign hosted by the Association of Migraine Disorders to promote migraine awareness and show support for the 1 billion people living with migraine disease worldwide. 

The collaborative campaign is simple to participate in: wear a pair of sunglasses of June 21, post a photo to social media with the hashtag #ShadesForMigraine, and challenge others to take part, too.

"Show you care, wear a pair."

Quick shoutout to my Dad: Happy Father's Day! 

© 2020 Jamie V.
© 2020 Jamie V.
© 2020 Jamie V.

Tuesday, June 16, 2020

Headache on the Hill Fundraising Event

Taking part in headache disorders advocacy is an important part of my journey living with chronic pain. While I participate in advocacy work throughout the year, one of my favorite events is Headache on the Hill (HOH) - you can follow the link to read about my HOH 2020 experience.

HOH is an annual event that brings together a large group of advocates in DC to share our stories, and call on lawmakers to recognize the impact and take action to reduce the burden (individual and societal) of headache disorders.

The Alliance for Headache Disorders Advocacy (AHDA) organizes the annual HOH event and covers one night hotel for each attending advocate. Most advocates must cover the remaining travel costs out of their own pockets.

In order to support the HOH event and provide assistance with travel scholarships for advocates to participate, Miles for Migraine is collaboratively* hosting a first-annual walk/run/relax fundraiser event from June 29 to July 7. 

There are a few different ways you can show your support: 
  • Donate (any amount is greatly appreciated)
  • Participate by walking, running, or relaxing (from 6/29 to 7/7)
  • Share this post on social media 
© 2020 Jamie V.
This link takes you to the event page: HOH walk run relax event. From there, you can Pledge a Team (Chronic Migraine Warrior), Donate to a Participant (Jamie Valendy), or Register (and join my team). 

This link takes you to my team page: Team Chronic Migraine Warrior. From there, you can Make a donation or Join my team.

Please join me!

"Each one of us can make a difference. Together we make a change." - Barbara Mikulski

*Participating non-profit organizations for this event include:

Tuesday, June 9, 2020

Migraine World Summit 2020 Replay

The Migraine World Summit is a virtual event that broadcasts interviews from over 30 leading experts, including doctors and specialists, to share about treatments, research, and strategies to help you manage and improve your headache disorder. 

The 2020 event took place in March. Due to the significant challenges we’re facing in the midst of the Covid-19 pandemic, the event is being offered again from June 10-19
The event is FREE: the interviews will be open according to the event schedule (4 per day, plus 1 webinar), changing each day at 6pm ET. You can access the interviews directly on the website free for 24 hours. If you’d like to have lifetime access to the interviews, you can purchase the Summit All-Access Pass (affiliate link).

Tune in June 9 at 5pm ET for a Live Pre-Summit Q&A with Hosts, Carl Cincinnato and Paula Dumas. They’ll explain why the Summit is being replayed, what’s new about the June Replay, and answer other questions. It’s free to join, but you must register beforehand. Click the link to register (no sign up required) for the Live Pre-Summit Q&A.

Monday, June 1, 2020

Wear Purple & Headache at Work

June 1 is the first day of Migraine and Headache Awareness Month (MHAM). Today, we’re highlighting a headache awareness initiative and headache at work. 

© 2020 Jamie V.
Wear Purple to Work (at Home)

The National Headache Foundation (NHF) created an initiative to help promote migraine and headache awareness: Wear Purple to Work (at Home). On June 1, wear purple and share a photo on social media to show solidarity for the 40+ million people in America living with headache disorders. 

When you share on social media, please use the hashtags: #MHAM #MHAM2020.

Headache at Work

Work often includes facing a slew of headache and migraine triggers that can stack and result in increased attacks: bright lights, computer screens, strong odors / scents, loud noises, stress, rigid schedules and deadlines, the list goes on. 

Many people are working from home during the pandemic. For some, work being moved to a virtual / from home format is proving to allow the flexibility needed to be a more productive worker and have improved quality of life.

It’s unclear what the work landscape will look like, as more workplaces decide how to move forward. It remains important to recognize the need for employer accommodations for those living with headache disorders. Hopefully these months of virtual workplaces will provide the evidence needed for companies to consider offering employees more options moving forward. 

Once workplaces bring people back to the office, the Migraine at Work campaign provides tools and resources for employers and employees to utilize. 

"I don't have a dis-ability, I have a different-ability." - Robert M. Hensel

Sunday, May 31, 2020

Migraine and Headache Awareness Month (MHAM) 2020

June is Migraine and Headache Awareness (MHAM) Month. This year’s theme is: You need community. #MHAM #MHAM2020 #YouNeedCommunity

If you're interested in learning more or getting involved, Migraine Headache Awareness Month is a great resource for information regarding upcoming activities being hosted by various individuals and organizations within the headache disorders community.

I’ve participated in Migraine and Headache Awareness Month, since it started in 2012. Some years, I’ve been able to participate more than others. One thing that hasn’t changed, is the excitement of coming together with others in the community to share our stories and do what we can to raise awareness, decrease stigma, and make the invisible visible. 

In the past, there have been daily blog and social media challenges. I’ve enjoyed participating in those ways, but I’ve also struggled with feeling guilt and shame for not being able to keep up. That’s something I continue to work on, as the pressure to perform is self-inflicted. 

I’m not sure how this year’s awareness month will look, from my participation standpoint. Perhaps I’ll take the opportunity to share some photos and stories from previous advocacy activities and even some attacks (I’ll be sure to label with the date, so it’s clear when they were). Whatever it looks like, I’ll write and share… and, I’ll be proud to be part of a community of people that “get it.” 

Here’s how to find me and follow along: Blog subscribe by emailFacebookInstagram.

“One of the most important things you can do on this earth is to let people know they are not alone.”
 - Shannon L. Alder 

Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.