Sunday, May 21, 2017

Next Chapter in vision loss

This past Monday I had scheduled an appointment with my retina specialist.  Just a routine exam to check in.  After a visit three years ago to a retinal specialist that was brisk with our appointment, I decided the next time I would return to my retina specialist that had helped me through some of the major transitions in the journey of Retinitis Pigmentosa, a degenerative eye condition.  Diagnosed at age 18 I am not new to this journey of going into the opthalmologist and getting the news that my vision has declined further.  One would think perhaps that after 32 years it would get easier.  In many ways, it does.  I have learned to follow the appointment up with a fun lunch with a friend, tandem bike ride with my husband, or something else besides quickly returning back to work.  A day for self-care and breathe and recognize that losing your vision gradually at times isn't an easy journey.

This Monday was different.  Work was so hectic - there wasn't going to be time to take a day off.  It was going to be a quick visit to the retina specialist and then back to the office for a busy afternoon/evening.  I even told Steve, who is always by my side, drop me off and I'll go in while you visit your mom.  He said, I'll be there for you, Beck.  I know, I know. Its not a big deal.  I'll do this one on my own.  I told him.  I'm not sure why.  I just wanted to go to this appointment by myself.  

I entered and Dr. Swartz was so glad to see me.  He greeted me with kindness and immediately such a personal interest in how I was doing, how was work going, and how was the family.  I reflected back to my first visit to see him many years ago.  I still recall him turning to me as the patient and recognizing that he was going to see me through this.  

Now, many years later here I was back in his office.  I was giving him an update on the latest marathon run, my recent book published, my thriving private practice with 15 therapists and telling him his belief in me years ago made a big impact on my journey.  After a few moments, his tone shifted as he looked at the pictures of my eyes.  He was telling me my maculas were extremely swollen and this was very serious.  My eyes were at risk of a macula hole.  He also said we were going to fight to keep this last 3 degrees of fuzzy vision as long as we could.  We were going to try eye drops first and then would move on to a stronger diuretic if needed to try to avoid a macula hole.  

We completed our visit and scheduled again for two weeks with my promising to follow the eye drop regimen seriously.  I left there so grateful for this kind, caring and knowledgeable retina specialist.  I also left there recognizing that I needed to ramp up my blind skills.  

Its an interesting journey to experiencing gradual vision loss.  Each decrease brings feelings of loss to navigate and experience.  I get that and value the importance both personally and professionally as a licensed clinical mental health counselor.  This past week it has felt like the light is dimming.  I have felt an increased sense of gratitude once again for that light.    

In the morning I will contact the Division of Services for the Blind and Visually Impaired so that I can return and get some more training in computers and braille.  I feel a sense of gratitude that scheduling this additional training is not going to be easy - I work full-time with a busy caseload as well as manage a busy office -- Resilient Solutions, Inc and preparing two retreats this summer at - Oasis Center for Hope.  There is lots of tandem biking and travelling scheduled this summer with Steve.  My life is rich and full.  I have colleagues cheering me on and asking how they can help in this change.  Ironically, I have to present tomorrow with the topic they requested:  I can do hard things.  


  1. You are so generous, always, to share both difficult and joyful news, and I am grateful for all I learn from you. You noted that, this past week, it has felt like the light is dimming. I so regret that is the case for your vision, but there will never, ever be anything dim about your spirit. There is no doubt.

    1. Lablove, you just made my day. Thank you so much for your sweet comment. I hope you have a wonderful day!