Was it a stroke of luck?“You’re lucky.” It’s a phrase I’ve heard often since my stroke—lucky to have my sight, lucky to have avoided more severe deficits, and lucky to be here.
I don’t feel lucky about what happened. But I do feel grounded in gratitude for the path of healing I’m on, for the people walking beside me, and for the ways this experience continues to shape how I see myself and the world. This blog is where I make sense of that journey in real time—through story, reflection, and the quiet work of rebuilding. |
On Thursday I had to make some decisions. I was still tired and overstimulated. I couldn’t imagine sitting through an hour of someone touching my face, so I canceled my makeup appointment to give time for my system to reset in advance of the night ahead. I was also struggling with getting ready. I still need help with some stuff so trying to be self-sufficient was a lot harder already a little run down. I underestimated not having a support person with me. I also struggled with what to wear: I had two dresses to choose from, and in the end, I went with the longer one. I think it was more about fitting in than what I actually wanted to wear. My intention had been to wear a tuxedo jacket, which I did, but I now realize that the shorter dress might have been a better choice. Looking back now my struggles getting ready were not a great sign. As I started to get ready, I became less and less present. I wanted to be, but I had so much anxiety about how the event would impact me physically and mentally that I couldn’t let myself fully enjoy it. In those moments before boarding the shuttle to the venue, I was definitely more of an observer than a participant, even though I could feel everyone else’s excitement. When we arrived, it quickly became clear that I had never experienced anything like it before. There was an actual red carpet, with paparazzi capturing the celebrities as they entered, which immediately made me realize the magnitude of the event. I wasn’t fully prepared for what I was walking into, but the energy of the event became clear as soon as I was there. Sure, it was exciting in a way, but I struggled to manage it for myself. Looking at the entire scene was overwhelming—the sensory input from every direction, from the multitude of people to the sounds coming from all corners. It felt like there were too many places to look, and my focus kept being pulled in different directions which was tiring. But if I focused on the small circle of people I knew, I could manage the environment more effectively. There were lovely moments, but I wasn't open to receiving attention from strangers or engaging with the larger crowd. The VIP cocktail reception alone was more than a full day of engagement for me. They had arranged for a quiet spot where I could step away for a moment of solitude, and I did take advantage of that briefly. But I also wanted to stay close to my group because they were a source of grounding and support. After all, there was still the concert and fashion show to attend. Another point where a support person would have been able to see my struggle before it overtook me. I still get a look when I'm fading and when I need someone to step in and provide support, but if you don't know me well you won't see it— I mask it well. You might notice my getting just a little quieter, closing my eyes a little longer for a brain break — becoming the quiet observer. In my quiet inner moment practicing the akasha mudra, I hadn't noticed the energy of the crowd shifted and everyone moved into the auditorium, I found myself having to catch up. The change in atmosphere was notable, and I didn’t enjoy the rush of it. With some help, I found our group’s section in the auditorium. We had two rows: one with chairs and one with higher stools. There was only one spot with a chair left, and the rest of the seating was in the back row. My group decided it would be better for me to sit in the chair, since I’m short and my legs would dangle from the stools, all true. In retrospect, though, being seated in the far corner of the back row, near the wall, might have been a better choice for me —lesson learned. Sharon Stone, a stroke survivor, was the host of the event, and she did a phenomenal job. I was in awe of her confidence. I could relate to some of her struggles, especially in finding words. Anyone who has had a stroke is working toward a new normal, and we are aware of when it feels like something we never had to deal with before. It's a continuous process of adjusting to the changes and challenges, and seeing someone like Sharon Stone, who’s gone through it and stands with such strength, was incredibly inspiring. First up was Suki Waterhouse, whose performance was both delicate and powerful. Following that, the fashion show took center stage, showcasing a beautiful range of ages, body types, and women confidently strutting their stuff. It was a celebration of diversity and empowerment, a true highlight of the evening. Then, Sara Bareilles took the stage, and she was an exceptional performer and storyteller. I feel incredibly lucky to have seen her performance, it felt special. While I’m not sure how long the program lasted, there were moments when I found myself pushing through, just trying to make it to the end. At times, I had to fight the urge to leave, which felt like a missed opportunity—almost as if something beautiful was wasted on me. But in the end, I did my best and that's all I could do. Afterward, there was an after-party I was physically there for, but I was shutting down --caught between the energy of the night and my own fatigue. It was a part of the experience, and I’ll take away what I can from it --like my chat with the AHA president's lovely wife who gave me the warmest hug. At coat check I connected with Jennie Garth who was there with her daughters - another warm hug. Maybe I just needed more hugs, lol. In retrospect, I had no idea what to expect from this event. It was unlike anything I had ever experienced. And while I enjoyed some moments, it was a challenge to stay present, and it’s taken me a few days to process everything. I’m grateful for the opportunity, but it was a lot to take in. If you read all of this, thank you.
BackgroundFinding an adaptive climbing program was important because that meant people at the gym have worked with people with disabilities. I still wasn’t sure how things would go for me, I’m always conscious that having non-visible disabilities means that you’re not seen - so I was excited and nervous. The intake form had the opportunity to explain my my concerns and limitations - it was great to get that all laid out prior. I tried to be very explicit since I knew it would help them plan for the help I might need.
So what are my challenges in this situation? I had an ischemic stroke in the RMCA so I have a weaker left side, and both my ankle and wrist can have poor range of motion as well as my (my previously frozen) shoulder. Since I can’t feel anything in my hand I was worried about being able to hold on or accidentally slipping off the holds- and since the concussion my hand’s been wonky (that’s a technical term). I just had no way of knowing if I could functionally do the work of climbing and pretty sure I hadn't given my cognitive disabilities much thought, more on that later. So how did I get here? At the start of the Summer of 2022 I needed to take a break and focus on my health and well being after a little over a year and a half of attempting to go back to work. It's kind of interesting because if you think about it why should I have felt the need to slip back into that space?
So I began my sabbatical October 3, 2022 engaging in an intensive therapy program and embarking on the 30 Day Journal Challenge from Passion Planner; I've been using their planners and love them. Anyhow, so I'm going to start posting those entries from my journal here (back-dated). Looking back, today it's been 8 month's since the stroke. I think about that morning often. I imagine it would have been disorienting to have help of any kind in the condition I was in, but Covid added an extra layer. Suddenly, men in what I remember to be gas masks came into the room where I was slumped on the floor. They came from behind me and I don’t remember how they identified themselves. One was in front of me and the other was to my right. I know they asked me questions. I don’t remember what they asked, but I think I was able to answer them. My arm was still moving on its own. The man in front told me to stop moving my arm. My arm did not listen to his orders.
I don't know how I stumbled upon the Love Your Brain Foundation, but I am thankful that I did. Among their programs, I found they offered interactive six-week courses. I missed out on the yoga, but was very lucky to get into their Discussion Group. Lucky, because I met the most incredible group of survivors. Their vision: A world where everyone affected by TBI can fully access their resilience, connect with a compassionate community, and reach their full potential. My experience:
I signed up for their six-week online mindfulness program, motivated by the tools they'd provide to support mental flexibility, physical strength, and positive thinking. What I got, was much more. In future posts I'll be exploring each week's topics:
2020 Christmas cookie baking. Baking from scratch had too many moving parts but thankfully @traderjoes has awesome baking mixes. That said, there were challenges. I forgot to set the timer, I got distracted after the timer went off and forgot the cookies in the oven, and finally dropped a bunch moving them from the baking sheet to the cooling rack. Overall setting this one as a success. #strokecooking #strokebaking #strokesurvivor #strokerecovery #christmascookies #triplechocolate #cinnadoodle #toffeeoat #pfeffernüsse |
Archives
February 2026
Categories
All
|


RSS Feed