My little red tether is my anchor in running with my friends. A beautiful guide dog has been my tether/anchor in mobility and independence for 17 years: 1. Pantera 2. Cricket, and now my beautiful 3. Georgina (Georgie). A life of family and friends is my joy and anchor in life.

The human spirit is stronger than anything that can happen to it. CC Scott

Thursday, December 20, 2012

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!


Erin said...

Hey I know what you mean when you say you don't know what you don't have. I am a congenital asnomic, which means I was born without a sense of smell. I didn't find out until the late years of high school, and it was more of a slow realization. I always thought that I was like everyone else and that people just can't smell very well, and when someone would ask "can you smell that?" I would just be one of the people that says no. I still have many reaalizations these days of how many things smell that I didn't think people could smell. I am flabergasted by the fact that people can smell things from a distance (like smelling a bakery or candle shop.) My most recent realization was "Crayons have a smell! What!"

Amanda said...

I may not comment often but I always love reading your blog. I find that my friends who won't allow themselves to be vulnerable are the ones who miss out on a lot of love. This year has fatigued me, and made me vulnerable but somehow also stronger. Thank you for writing. Hope you have a wonderful Christmas!

Becky said...

Amanda - Thank you so very much. So agree! I hope 2013 is a wonderful year for you!

Erin - Wow - that is so interesting and true. Yes, crayons do have a smell and playdoh :)!

Retired Duo said...

Happy winter solstice. It snowed this morning in southwestern Ohio, so our first day of winter is definitely wintery.
Thanks for your post. Your observations on vulnerability are so insightful - goes with Eleanor Roosevelt's quote, "Do one thing every day that scares you."
We hope you and your family have a happy and blessed Christmas.
Pat in Ohio

Karen said...

The doctor came out into the waiting room where I was that day so long ago and said he would like to privately visit with me. I was so shocked at the diagnosis of RP. We had never heard of it either and Dad and I (I think you were off with Steve maybe to the dance you referred to)went to the medical research sources at the University Library. What we found out that night stunned us and after much crying we contacted UCLA Medical Center(Jules Stein Eye Center) and set up an appointment for you. The first one they had available was 4 months later. We went and have yu been so proud of you and what you had done with your life. It was sad news that day. I had a lady tell me to day that the positive impact you have had on others lives could hardly be measured. Love you lots Mom

Anonymous said...

Your courage and compassion always inspire me. I hope your family has the brightest and best Christmas ever. And a warm pat on the head from me and a woof from my collie, Cubbie, to Cricket.

Kimberly said...

Thank you, Becky. Your blog is inspiring and wonderful. Ashley, granddaughter, said how she likes to read your blog! I was glad.

Allie Allisonabroad said...

Hi Becky,

I am really enjoying your blog. You sound like a really lovely and positive person. My name is Allison and I'm from New York. I was inspired to read your blog as I'm intersted in getting a guide dog. I'm trying to talk to as many people as I can to learn what life with a guide dog is like. If you could provide any assistance, it would be greatly appreciated. Thank you for taking the time to read this.


Becky said...

Thank you so very much for your kind words. I would love to connect with you and share further on what life is like with a guide dog. I'm trying to find how to connect with you -- can you email me: