Hope on the Horizon

I’m in Iowa City for my annual eye appointment and am feeling anxious, as usual, this time of year. Eye appointment week is exhausting because it forces me to sit with fears I usually try not to dwell on. I have to face my blindness head-on and talk about how my vision has changed over the past year, which feels vulnerable. Even though vision loss is my daily reality, it is still hard to talk about, and I do not like thinking about it more than I have to. There is always that fear of finding out just how much my vision has worsened. Being in Iowa City brings it all to the surface because this is where I have to stop pushing it aside and fully face my reality. At the same time, there is also hope here. The people are friendly, the food is good, and it is worth the 10-hour drive because I know I am receiving the best care possible. Dr. Drack is incredibly kind and caring. She is positive, supportive, very knowledgeable about BBS, and in the know when it comes to current and upcoming research. She is such a great doctor, and I always leave feeling hopeful and encouraged because of how positive she is about what may be ahead. I have been a patient of hers for the past five years, and I am so grateful for the care and encouragement she has given me.

Day one was visual field testing, which basically means looking straight ahead and tapping every time I see a light so they can measure how much vision is left. My visual field is very, very small, like a pinpoint. While I do my best not to let my extremely limited vision define my life, the daily impact of not being able to see is very real. Although the appointments themselves were a breeze, OCD was still present. After my first appointment, I went shopping even though I was not really in the mood because OCD was loud. But after a moment of internal battle, I put OCD in its place, took a minute to regroup, and was able to enjoy shopping. The store had so much pink, which made it even better- pink makes me happy and this little reset lifted my mood.  Resilience, for me, is not having a perfect day; it is refusing to let OCD steal every moment. What helps me keep going is talking back to OCD, taking a minute to regroup, and finding joy in the little things.

Day two was the bigger appointment day. After my eyes were dilated, I had more testing, including the VEP flash test, which measures how well the eye is communicating with the brain, along with photos of different parts of the eye. The appointment itself ended up being a positive one. My visual field was stable, which means my vision is essentially the same as last year, with only a couple of small changes overall. The research updates gave me so much hope. The most encouraging part was learning how close a clinical trial may be to happening and that it could be something I might actually be part of. It is a gene therapy aimed at helping preserve vision in individuals with BBS1, and hearing that it is on the cusp of reality was incredibly exciting. Even though my vision might not improve, the possibility of gene therapy saving my remaining vision feels amazing and beyond exciting. I am so thankful that research has come this far and that real hope is finally on the horizon.

I think the biggest takeaway is that hope and fear can coexist. I went into these appointments with a lot of anxiety, but I left feeling hopeful about what may be ahead.

Never give up hope!