Last week was the 15th Usher Syndrome Connections Conference in Rochester, NY. I always look forward to this time. This year was full of a lot of extra emotions after all the changes in my life. In this blog, I share my emotions and experiences surrounding the conference, and my appreciation for a community that means so much to our family.
This year’s USH Connections conference had over 500 attendees - the largest conference we’ve ever held by far. But the statistic that surprised me the most was that over half of the audience were first time attendees. Having been involved with the Coalition since the beginning, it was amazing to feel the energy in the room! It’s like no other.
It was 14 years ago when we first expanded the conference beyond researchers. In Seattle, a small group of us set out to plan a small conference where we were able to bring individuals with Usher syndrome and their families together meaningfully for the first time. The end result was a small 75 person conference at Seattle Children’s Hospital with a social event after.
Before we started to hold these conferences, it was difficult to connect with others and I remember feeling so alone. Out of pure luck, Dr. Bill Kimberling (who I am forever grateful for his contributions to advancing USH research) introduced us to the Dunning family and we became fast friends. Today, because of the Coalition's efforts, it’s easier for newly diagnosed families to find a community of support. It wasn’t like it was for us. So, as I looked around the room this year, my heart was full that these newly diagnosed families would hopefully have a different experience to the one we had.
Up until the last few years, I used to be in denial about how emotional these conferences made me feel. I’d board the plane with the kids, head across the country to the unknown, with excitement, jitters, hope, and fear. And, without knowing, I had to put an emotional wall up to get me through the conference.
I remember that first conference I attended like it was yesterday. I remember walking into the large room of people (even though the audience was much smaller than it is today) in awe. It was the first time I had seen tactile sign language being used, and I had no idea what a co-navigator or SSP (support service provider) was. The Protactile Movement was just emerging in Seattle, where the conference was. I learned so much - about research but also about what it meant to be part of this community!
I remember being so happy yet overwhelmed at the same time. Our kids were so young at this point and they had no vision loss yet. At the time, I was there only to hear about the research progress - about the hope for a cure. That’s where I was on my journey. I’m ashamed to say that it was difficult for me to see so many people who were deafblind all in the same room. I hadn’t yet come to terms with the fact that this was our reality.
My worldview has changed since then and now I look forward to the conference for different reasons. Although I appreciate the research updates, what I look forward to the most is being surrounded by community - these are our people. They are people who I connect with on social media, email, text, or Zoom throughout the year but there is nothing like face to face interaction. Maybe this shift is because I have, over the years, realized that to survive, I’ve had to balance hope for a cure with the reality of our every day. I want more than ever for a cure - for my kids to not be blind, but more importantly, I want them to be happy and for them to live their best lives - for them to have people who love and care about them. Honestly, it’s difficult to get into the right headspace to really open myself up to let that message of hope at the conference shine in me because I know that when I go home, we’ll just be waiting. I know there is so much progress in research but sometimes my mind and heart can’t reconcile all of that.
This year, I’ve struggled to answer the question of “Who am I and who do I want to be.” Part of this self-reflection has also been to figure out my place in our community and what I bring to the table.
I struggled this year with what I wanted to get out of this year’s conference. I initially told Krista, the Coalition’s Executive Director, that I couldn’t speak at the conference - that I, “just wanted to be a mom.” I was just feeling so vulnerable after all my life changes and honestly I wasn’t even sure emotionally if I would be able to even attend. About two months ago, however, I felt healthy enough to do what I love, help families. So, I said yes to do a workshop on IEPs. I’m so glad I did.
Attending the conference this year felt different. I had butterflies like I had never before - I was nervous and full of self-doubt. Was I too vulnerable due to personal life changes? Would I not be able to handle the emotions? Was I confident enough to promote my book (that is so scary!)? Would others be supportive of my life changes or judge me? Would I be able to do what I love - support families - while still protecting my energy?
But I was ready. As soon as I walked into the hotel and saw so many people in our community connecting and enjoying each other, I felt home. A huge sense of peace washed over me. These are our people. These people don’t judge me. These people care about me and our family.
The conference was amazing. I thoroughly enjoyed myself - I learned a lot and met so many new people. But what I am most proud of is my ability to get what I needed from this weekend, while still taking care of myself.
I knew I would walk out of the weekend exhausted from the cross country travel and from empathy fatigue. I always do. In fact, it took me a full week to write this blog about my experiences. I needed this week to recharge.
What I don’t share with people is what happens behind closed doors in order to take care of myself. On the Saturday afternoon of the conference, the fatigue of the travel hit me, along with the time change, and emotions of it all. I had been at my exhibitor table that morning and the day before, presented both on Friday and Saturday, listened to researchers share about the progress, met a lot of people, made sure that Dalton felt supported. At around 3 pm, I couldn’t process any more information, and I desperately needed a break - and I needed it NOW.
I hated to admit that I needed to prioritize my well being. I didn’t want to let Dalton down, or anyone down, and I felt like a failure for thinking about going upstairs to my room for a bit. But, I did it. So, how you would see me at 4 pm that Saturday was in the fetal position on the bed, overwhelmed by it all. This feeling is not new to me. I’ve felt this many times before and knew that, if given an hour of quiet, I’d be ok.
What I want new families to know is that, still 15 years later, I have limits - I need breaks. I look forward to this weekend more than anything but it’s hard. It’s hard to face reality, try to fit it all into two days, and there is so much to learn and people to connect with, and not enough time to do it. Then there are feelings of grief, still, and we all return to our respective worlds on that Sunday.
But through it all, I am so grateful - grateful for our amazing community and all my current and future friends, grateful that I chose deafblindness for my career, and grateful that sharing my story helps other families. Helping families like mine is my biggest joy. Yes, I need to recharge at times but I have learned over time what my limits are and know how to take care of myself so I can take care of others. I’ve come a long way.
I end this week, recharged, full of renewed hope and energy to carry on until we all can be together in person again. Thank you to the new families I met this past week. I hope you had a positive experience and were able to see the impact that you being there had on others. You are enriching the lives of those around you. Thank you also to those who have been on this journey with our family for years now. This year, especially, I needed you and you showed up.
What was your experience at the conference? I hope you feel a sense of connection and hope as you return home to your lives. I hope you found ways to recharge like I did - perhaps it’s finding a few minutes of quiet to recap the weekend, or a minute just to appreciate your support system? I’d love to hear about it. Whatever it is, I hope you find peace in knowing you are not alone.
Comments