Remembering Retinitis Pigmentosa Diagnosis.

I don't know where this picture is but it is titled PlanB. I like that title in writing this post :).   I think there are so many times of embracing and loving 'plan b'. I also love pictures where Cricket is smiling!

Life goes by so very quickly. It was 29 years ago this time of year that I received the diagnosis of Retinitis Pigmentosa.  For some reason, I've been reflecting on this journey the past few days.  I was a freshman in college in my first semester. I was having a blast - both in school and the social life. There was one guy that was particularly becoming a great friend (Steve). We'll see how my memory goes (correct me, Steve, mom and dad if I'm remembering differently, when this diagnosis came). I had recently visited a neurologist because my hands were going numb. As part of the routine exam, he held his fingers out to the side and asked me to tell him how many fingers he was holding up. I said I didn't know -- people can't see out to the side like that! Well, apparently you can! It was a situation of not knowing what I couldn't see to say I couldn't see it! Anyone reading this relate? Note: I had been to the opthalmologist yearly since I was a little girl and we were aware that I had poor night vision but reference to RP had not been made and this was 29 years ago -- before internet. I feel old :)!

After this visit to the neurologist, I was referred back to the opthalmologist who confirmed that I had Retinitis Pigmentosa. It was the Friday right before Christmas. I remember going to an Institute dance that evening, seeing Steve and telling him of the diagnosis.  At this point, not even sure how you pronounced this condition!  He was kind, caring and supportive with such humor on many topics.  We laughed a lot that night. I also was very aware how much he cared and believed in me.

Although I wasn't seeking it, I recognize that Retinitis Pigmentosa gave me the gifts of vulnerability and uncertainty at age 18.  I had been given the diagnosis of blindness and an opportunity to gain insight in different ways.  As some with a degenerative condition can relate, you are put in the place of finding that balance of enjoying today - preparing for tomorrow and navigating new losses and adjustments as they come up.

A friend while we were chatting over hot chocolate and crispy creme donuts (YUMMY combo) today said to me, you just seem to let things come and go. Well, thank you for the kind compliment:), I thank RP for the lessons and growth learned the past 29 years.    

As Brene' Brown, writes in Daring Greatly:  Vulnerability is the birthplace of love, belonging, joy, courage, empathy and creativity.  It is the source of hope, empathy, accountability, and authenticity.  If we want clarity in our purpose or deeper and more meaningful lives, vulnerability is the path.  She defines vulnerability as uncertainty, risk and emotional exposure.   She invites us to fill in the sentence Vulnerability is ______________.  Here are some of the replies (from her book): standing up for myself, asking for help, starting my own business, trying something new, exercising in public.  I can relate to each of these!  I recall with blindness -- pulling out that very useful mobility tool - the white cane out for the first time, I felt so vulnerable but then empowered as I felt the courage of showing up and letting myself be me.

I love her line - Often the result of daring greatly isn't a victory march as much as it is a quiet sense of freedom mixed with a little battle fatigue.  Oh yes, amongst the amazing joys and freedom, there are times of battle fatigue.  Isn't that the truth for us all?

A friend recently said to me -- I like that you are real and so joyful about your life.  Oh, I said - thank you. I like that and think I can thank RP for that.  I think when we feel space to feel vulnerable and authentic we also have the space to soar with joy.  These amaryllis are amazing.  They are bursting with blooms.

I have learned much from those times of 'battle fatigue' with Retinitis Pigmentosa.  I have also experienced incredible joy and a beautiful sense of freedom from daring.  I've been thinking about a friend who wrote me an amazing email after my battle wound/concussion earlier this summer.  She simply acknowledged the roller coaster of Retinitis Pigmentosa, its changes and offered her support.

I often feel some vulnerability when I put a post up like this.  Then there is something also fun about just typing out my thoughts and receiving comments or not :(, so here I go pushing publish and feeling a bit vulnerable :).   It is risky to feel deeply but it also brings deep joy and love - can't imagine any other way.  As my shirt that just arrived in the mail for the marathon says:  Get out and Live.  Love it and I think that is one of the gifts of RP is to have the courage to get out and live ... being compassionate to the challenges as we do so it gives us space to create new adventures.  Okay, I'll stop. I'm sounding like a therapist :) oh I am a therapist and that's okay!