Keep going - I’ve had a hard time writing lately. My mom died on Oct. 27^th, 2020, and she ALWAYS read my posts. Often, she commented. So, knowing that she will no longer read, and there will be no feedback from her is difficult for me. But I know that she’d want me to continue writing. In fact, she’d be sad if I didn’t. So, I need to keep going.

Raise awareness - One of the main reasons I’ve written in the past, has been to raise awareness about my invisible disorders. So, I’ve also thought about how I can best continue to spread awareness about my invisible disorders, which include migraine associated vertigo (MAV), a vision disorder, PTSD from the sudden onset of my illness, and irritable bowel syndrome (a common companion with migraine disorders).

Yes, it’s all part of my package, and there still aren’t a lot of people writing about these, in particular the MAV and vision disorder. Some people don’t have the ability to write about their journey, or simply choose not to, which is OK. I’ve never shared everything, but rather what I consider to be snapshots of my experience.

Write about my experience - I’ve explored and thought about options, taking into account my limitations. I’ve come to the conclusion that truly, as before, my best path still is to share VeDA (vestibular disorders Association) Facebook posts occasionally, and to share my own story.

My writing used to focus on rehabilitation/therapy. That will no longer be the case. I currently do Feldenkrais - every other week by Zoom. This is challenging for me, and I’m still working out how it works best for me, and what I want to accomplish with this therapy.

I talk to my cognitive behavioral therapy (CBT) specialist monthly, and it’s much more focused on what my life looks like now, and dealing with my mother’s death. Just as my CBT is now focused on what my life looks like now, so too will my writing.

Life does not revolve around therapy - So, what DOES my life look like now, living with my invisible disorders, but trying not to let them be the whole picture? What does my life look like with some therapy, but after all these years, not having rehabilitation/therapy as the focal point? Therapy of any kind is always a means to an end, not an end in and of itself.

My music - Doing my best to focus on what I CAN do, what is positive in my life. One of the real positives in recent weeks has been playing my flute over the phone for my dad. We both share a love of music, though he does not play an instrument. He really enjoys it, and so do I. I realized I really miss playing for others, and getting feedback is enjoyable, and very different than a music teacher.

Perspective - This is where I want to try to focus going forward – acknowledging the challenges, and also holding on to the positives. Knowing that I’m doing the best I can with a difficult situation. My life is very different - *I* am different than I was prior to getting sick. I am much better than I was in the beginning of my illness, AND I’m much changed.

One day at a time - My life could be much worse, and as many people talk about getting “back to normal,” I don’t know what my normal will look like. What is in my power is to take one day at a time, keep going, keep in mind what my mom would want for me. And what my dad still wants for me. What I want for myself. A life with some enjoyment, and a sense of purpose.