Sunday, January 2, 2022

A Year in Review, Kinda (2021)

I like things to be in order. I always have. Sometimes, it gets me locked into place and prevents me from starting or reaching out or sharing at all. It's more than ok to start from where you are... from where I am. That's where we are: now, this moment.

This year has included many health-related challenges, including a hospitalization, multiple infections,
major surgery, new symptoms, testing, imaging, new diagnoses. Oh my!

Photo by v2osk on Unsplash
I've faced a lot, made it through a lot, and learned a lot. 

I'm still going through a lot, processing through a lot, and focusing on healing a lot. 

A lot.

It's been nonstop.

Generally, my primary way of processing is through writing. It's how I move through life's ups and downs... especially the latter.

This year, though, my writing has been more focused on documenting what's going on, defining a bunch of new to me terms, and doing my best to wrap my mind around it all. The processing part has been tricky, as I've often been merely trying to get through one moment to the next. 

I want to write.
I want to process. 
I want to share.
I need to survive.

There are times that the physical side of recovery consumes all of my energy. That's compounded by trying to strike a balance of allowing the emotional aspects to ebb and flow, and not getting completely swept away by the waves of emotion. Physical pain is rarely experienced without an emotional impact, at least for me.

So, I write thoughts down. What that looks like varies: snippets of thoughts or ideas, a list of questions, prayers, words or songs that resonate with me, unedited raw emotion, a moment when dots suddenly connect... even a complete blog post.

Then, weeks and months (and, sometimes, years) pass by before I finish or share / post what I started writing in the midst of it all.

I know that it's ok. And, it can feel overwhelming.

I have to start somewhere. Somewhere is here. Now.

I'm struggling. On multiple fronts. 

There are times that it feels like there's no time, space, or energy to slow down to process something before another thing drops. 

I recognize that I'm in a season of needing to focus on my health and hurts. I know that it's important. Crucial, even. I know that it's what I need to do. And, it's really hard. 

I'm not comfortable with needing to focus on my stuff so intently, for so long. It's exhausting. 

I'm well-versed in managing and seeking support for the chronic illnesses I've had for years. Asking for and accepting help have been things I've gotten much better at over the years (Help: A Four-Letter Word). The trouble is, there's been so much new health stuff this year, and I don't yet know what help or support I need to ask for. 

It's frustrating to so frequently have something new, worse, and/or more going on with my health. I feel like I don't have much left to give to others... and, that... that is so hard.
I acknowledge that feeling it doesn't make it true. It's a self-judgment / critique. I truly believe that a poll of my people would show that I'm giving others love, support, care in multiple ways and that I am and have always been enough.
I'm also able to recognize that I've grown in how I handle and face uncertainty, change, loss, complexity. I'm still learning and growing, for sure. 

I don't know how things will look here on my blog moving forward. I plan to continue to use this space as a place to process and share. I think that might look like a combination of words I wrote in the moment and where I'm at in the process now. 

I'm looking forward to writing and sharing more of my journey. 

"No matter how big or small, allow yourself the chance to reflect on all of the things you've championed in the past year. You are allowed to feel proud of yourself." - Olimatta Taal

Friday, October 22, 2021

13 Years Later, Now

I recently posted Reflecting 12 Years Post Accident, which I wrote in 2020. Please feel free to click over and give it a read. While I don't post about it every year, I felt the need to, again, this year (2021).

Mixed emotions. That's how I feel, as the 13th anniversary of my car accident approaches. Each year hits a bit differently. It doesn't always affect me. I took the power of that date back several years ago. I know that the date isn't inherently bad... yet, I feel the weight of it a bit more this year.

Photo by Tengyart on Unsplash

This year, it makes sense why it's on my mind more.

On September 30, I woke with what I labeled a "sleeping injury." I had pain and limited range of motion in my right shoulder and neck. I joked about how ridiculous our bodies are, that I could hurt myself while in an unconscious state.

I figured it was simply a matter of sleeping weirdly and that it would dissipate in a few days.

It didn't.

The tightness, pain, limited range of motion worsened each day. I've tried: heat, ice, muscle relaxers, nsaids, theracane, lidocaine patch, gentle massaging and stretching.

My sleep and daily functioning are both being disrupted and limited. I want to write, but I'm having a difficult time physically doing so.

There's an emotional component to this pain, as well, as it's reminiscent of past trauma / pain.

I know that our minds are prone to distort or misremember things, including pain experiences. This is often compounded by time. Understanding all of that, there's still a familiarity with the pain and limited range of motion I've been experiencing.

I injured my neck and right shoulder in a 2008 car accident. While I don't fully remember a chunk of time after the accident, I remember pieces. One of those pieces is that there was a lot of pain and I was physically very limited in using my right arm and neck.

Two years after the car accident, I had a neurostimulator implanted (2010). I had a very long and difficult recovery, including severely limited range of motion in my neck.

I've been doing a good job recognizing the connection to these past traumas / events that my mind and body are making, and reminding myself that they are separate. The car accident isn't happening right now. I am safe. 

In light of current struggles, I'm being reminded:
  • Healing isn't linear - past grief, trauma, loss, challenges keep showing up. Each time they do, I do my best to feel it and process through.
  • I'm safe - it can be especially difficult to remember this, when there's such similarity in how I feel (physically and/or emotionally). 
  • I'll get through this, as I have previous challenges.
Update: I was seen by primary care on 10/5. I woke on the 13th anniversary day (10/10) with the first notable improvement in symptoms since they started. I'm so grateful for that. I have imaging and doctor appointments on the schedule to help determine the path forward.

Sunday, October 10, 2021

Reflecting 12 Years Post Accident (2020)

I wrote this post last fall (October 2020), as the anniversary of the car accident approached. 

Over the years, the meaning and emotion of the event have ebbed and flowed in a way that perfectly illustrates the grief process. I've written about this multiple times before: 
When I moved to Arizona in 2017, I started seeing a headache specialist here. It so happened that the date of that initial appointment was the same as the accident. I consciously chose to take back that date; the move and new provider representing a clean slate of sorts. 

This year has been filled with so much loss, on both the individual and collective levels. Perhaps it's in light of this that I find myself more aware, as the anniversary of the accident approaches.

As 12 years post accident approaches, I find myself reflective. 
Photo by Faramarz Hashemi on Unsplash

Following my accident, I fought hard to get back the pre-accident Jamie. I finally reached a level of acceptance in living with this disease, and fought hard for the Jamie I am today. I'm still a work in progress, no doubt. But, in this moment, I recognize that I've come a long way.

I have to be very mindful about how I think about this. It can be all too easy to spin down a path of what ifs. The truth is, the person I was when the accident happened is frozen in time. She very well might've had a different journey, but the person I missed for so long (and sometimes still do) would be whoever she grew to be over the years. And, that, is unknowable. It will forever be an unknown. So, I must remind my mind that the grass may not have been greener. 

I'm grateful to have some people close to me that know me and love me as I am, not who they wish I was. I want to see me through their eyes, to believe in myself the way they believe in me...  with less self-critical judgment. I'm working on it.

Today, I recognize that living with chronic pain is hard, that each year that passes may affect me differently, that grief is a process with ebbs and flows... and... that I can do more than I think I can, that I can engage with myself with compassion and love, that I can give myself space to experience the grief process in all the ways it shows up. 

(As I'm posting this a year after writing it, I'll share about this year's anniversary in a separate post) 

"Loving ourselves through the process of owning our story is the bravest thing we'll ever do." - Brene Brown

Monday, January 18, 2021

In Loving Memory of Jordan Conkle

*Sensitive Topic / Trigger Warning: death, suicide

My cousin, Jordan Conkle, died from depression by suicide on November 3rd. 

Loss and grief are part of the human experience, happening in a multitude of different ways throughout our lives. It's never easy. Processing tragic, devastating losses is really hard. I want to share some things that I’ve written, as I've tried to wrap my mind around this loss. It may be a bit bumpy, but grieving is rarely smooth sailing. 

In the Moment
Today started like any other. When I checked my phone, however, I had a missed call and voicemail, overnight. I listened to it and reached out via message to find out more. It was about Jordan, but that's all I knew. I didn't feel up to a phone call, but my anxiety nagged at me, so I texted my sister in law to see if she knew what was going on and if Jordan was alright. She immediately called me. Ok, so it's something that takes explanation. My mind didn't immediately jump to the worst (which is actually an improvement for me). 

Then, she said the words. The words that made everything spin and stop at the same time. 

Jordan ended his life last night.
She repeated it.
I started to collapse down and lose it. Jeremy caught me and helped me safely down to the ground. 
I think I whispered, "Jordan's gone," in disbelief.

There is no good way to find this type of thing out. That said, I'm grateful for the family member that reached out during the night and for my sister in law. She was direct with telling me what happened, and was a soft and safe place for me to experience the initial shock and wave of emotions. I'll always be thankful for her love and care in such a heartbreaking moment.

Thoughts Day-of
Today, I found out that my cousin ended his life last night. I don't know how to wrap my mind around this.

Losing someone is hard. The circumstances around the loss, I find, can magnify different parts of the grieving process. You still must travel through the stages, in whatever order they present and re-present, but some come up more or are more pronounced.

This year, I've lost two people, both completely unexpectedly. I knew losing people would happen. It's part of being human. I wasn't prepared for the losses to strike so soon to people in their 30s, like I am. It's so hard to process, on multiple levels.

I don't want to sit in it, but I've been in the depths of depression. I know how bad that place is, and I'm so grateful that I've gotten out. I know others that have been in that place, too. We live with deep depression. There's a knowing that only people that have experienced that type of depth can have, even though everyone's experience is unique. I try to support those I can, in the ways that I can. They ultimately have to get out of the pit, but I can sit with them and shine a light for them when they're surrounded by darkness. 

I woke today, wishing it had only been a bad dream. It isn't, and that is crushing.

Memorial Service
The memorial service for Jordan was held in-person in Texas, followed by a graveside service. They streamed the memorial service on the church's social media. My sister and I were able to FaceTime and watch together. 

I attended a virtual memorial service earlier this year, but this one felt different. We weren't in Zoom rooms watching the service together. It felt like everyone was gathered together, and we were watching from afar. There was a disconnect. 

During the service, I learned that Jordan's favorite worship song was Here I Am to Worship. Jordan was someone who lived and loved big, and he's deeply missed by many.

I'm grateful for conversations with loved ones, both those also grieving the loss and those supporting me in my grief. I'm grateful for my cousins, who reached out and connected. I'm grateful that my sister and I were able to watch the service and be with one another in the ways we were able. I know that there will be waves of processing and grieving, much of which is done alone. I'm so grateful to have people that love and care surrounding me, who will support me however they can.

The Following Months
The holidays were filled with a lot of different emotions, for a lot of different reasons. In light of a loss in the family, my mind fluttered through memories, specifically those of growing up so close with my cousins. 

On Thanksgiving evening, I began to miss more... our big family Thanksgiving get togethers. Kristin and Jordan would get there later in the day and we'd play games. 

As Christmas approached, I felt the missing grow. Missing out being with family and friends, especially in light of a pandemic and unexpected family loss. I had dream(s) that included PaPa and Jordan, two family losses in as many years. I knew in the dreams that they're no longer with us, but they were special all the same. The one that Jordan was in: I think we were gathered as a family trying to watch his funeral service or something. Jordan came to me. He was younger. And we hugged, the way he did. 

I continue to give myself space to process. I wrote, "Jordan, it's Christmas Eve. We used to spend every one of them together (as we grew older, it was the weekend before Christmas). We would be eating, laughing, opening gifts, sneaking off to play with our gifts as the adults talk."

It's interesting the things we remember. I have tons of memories with Jordan, but many of them are simple moments. The silly grin on his face, his facial expressions, the way he hugged and laughed and smiled. 

As I've been processing, it's clear that we don't always remember the details of a memory or moment. That's ok. We can remember and hold onto how we felt in that person's company or presence. Love, laughter, comfort, calm, joy. All of these are so precious. 

Letter to Jordan
How can you not be here anymore? It's so hard to make sense of this world not having you in it. I know that we haven't kept in touch. But, you always have a place in my heart. I cherish the memories of all of us throughout the years. Watching Milan, playing games, playing pool, dressing you up, going to car shows, monthly family birthday get togethers, Thanksgiving at my parents' house, Christmas at your parents' house... I'm grateful that we were able to have that time together. 

We last saw each other in November 2019 at Grandma's 80th birthday party. When you were leaving, you stopped and chatted with me, giving me all of your attention. You told me that you read my posts and you asked me to tell you more about my advocacy work. We talked about Headache on the Hill and me speaking at RetreatMigraine and Miles for Migraine events. You shared that you wished I wasn't in so much pain, but that you're so proud of who I am and the work that I do. Then, you gave me a hug. Your hugs were so healing, a safe and loving embrace. I am beyond grateful for those moments and that memory with you. I felt seen. Beyond the childhood and familial connection, but rather one adult to another. That connection we had, I will always remember and cherish.

Jordan, I'm so sorry that you were in a place of such despair that you didn't see a way out. I won't get wrapped up in how I imagine you feeling or even what mental health challenges you might've been facing, as it's all conjecture, and truthfully doesn't matter... it won't bring you back.
I love you so much, cousin. 

Final Thoughts, For Now
I am working so hard to process the grief. To acknowledge and express the things I wish were different, without carrying the weight of regret. I will continue to process through the hurt places and grieving potential future outcomes. Learning lessons along the way that I can use to help shape how I move forward. Processing through the grief until what remains is love, cherished memories, and lessons to move forward.

About Suicide

"No one ever told me that grief felt so like fear" - C.S. Lewis, A Grief Observed

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.

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.