Retinitis Pigmentosa. Living an Active Life

When I was diagnosed with Retinitis Pigmentosa there was an unknown of how could I be active.  Through the years, I have learned many different options and activities to living an active life with blindness.  I am SO grateful.  You might enjoy this video.

I love living an active life

Surrendering into Serenity

Surrendering into Serenity

This is what I am faced with right now in my life's journey. While I'd like it to be different, I must allow myself to face the reality of what is happening -- when you surrender you release attachment to how you feel your life should be and invite yourself to be in the presence of your life exactly as it is. While naturally difficult to do, surrender is an act of courage. Dr. Alan Wolfelt

Picture of the family - all Aggie gradutes now.  (And why did the photographer have Kendall be on top of sweet Pantera!?  Thankfully it was brief! 

 In the spring after my diagnosis actually around this time,  we travelled to UCLA for a consult with a specialist in Retinitis Pigmentosa.  In the gift shop at the UCLA Medical Center was a magnet with the Serenity Prayer.  Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.  At the time, it didn't mean a lot.  I was engaged and even though I was sitting in a retina specialist's office, blindness seemed far into the future. The message of Surrender began to come much sooner than I anticipated.  After I turned in my driver's license as a young mom,  I felt a heaviness and a sense of being alone.  I recognized that although I had wonderful support, Retinitis Pigmentosa was mine.  I had the choice on how to respond. The last of all human freedoms, the power to choose one own's way given any set of circumstances.  Victor Frankle  To bounce back and have joy in my life, I would need to surrender to the changes/losses that were happening as my vision continued to decline.  I could learn new ways to complete my education.  I could learn new ways to travel independently.  I could learn new ways to manage my home.  I could learn new ways to enjoy the activities that I loved to do. Although the world was going dark for me physically, I could create so much light in my life.  

Such peace comes as we surrender to what is ... 

What has been your experience with surrendering?  

Courage

We all have moments etched in our minds: joyful ones and hard times that become opportunities :).   One of those days for me was a spring afternoon many, many  years ago.  I even remember what I was wearing on this day: khaki pants and a favorite lime green and orange blazer :).  Maybe it would be back in style now!? The time frame was: young wife and mom, working part-time at an elementary school,  still adjusting to loss of my driver's license, in the middle of cane training and my vision was declining. I had recently gone to the retina specialist where I learned I had a secondary complication in my eyes -- Macula Edema (swelling in the macula - which causes further damage to the vision).   I was taking a medication that was a diuretic and was making me very sick.  The previous day I had been in the hospital getting an IV.  They were trying to find the balance of using the drug to be effective with the swelling while not impacting my health in other ways.  On this day I was beginning to experience kidney stones and was exhausted and in pain. I was also feeling discouraged as I knew the doctor would probably need to take me off this medication that was reducing the swelling.  I recall walking up the stairs hoping to have a few minutes to lie down before the kids came home from school and had various after school activities that I wanted to attend.  This simple quote helped me recognize my courage in that day and allowed me to cut myself some slack as well :).    
  

Does a day of courage come to mind for you?  

Yielding in our Resilience

A previous post resharing:

Yielding in our Resilience

Now probably seven years ago, I was running up the steps on our side yard with Cricket, my guide dog at the time.  (She was on leash and not guiding.)  The sprinklers suddenly came on.  In an effort to get out of the way quickly, I became disoriented and ran full force into an electric box on the side of our house!  I hit so hard that it knocked me down and out.  I got up and after sitting there for a few minutes went into the house and told Steve about my latest adventure!  Other than my head felt a little sore, I felt fine so we didn't go into the hospital.  I actually ran the next morning.  I was training for a marathon.  After that I started feeling worse.  However, I went into work.  We were getting ready to go on a big vacation.  I felt I could push through the day.  As the day progressed I began to feel a little, perhaps my colleagues would say a lot, spacey. My colleagues intervened, called Steve, cancelled my appointments for the rest of the day and reminded me it was time to pull back and get to the hospital! I would learn I had a concussion.  I was told no running or anything else that wold raise my blood pressure and lots of rest.  In the days ahead,  I learned about fatigue like I had never  known.  It seemed even having a conversation was draining.  As much as I wanted to push through ... it was time to yield.

Lao Tzu said,  "Water is fluid, soft, and yielding.  But water will wear away rock, which is rigid and cannot yield.  As a rule, whatever is fluid, soft and yielding will overcome whatever is rigid and hard.  This is another paradox.  What is soft is strong."

I love this quote.  One of the lessons learned from my blind resilient journey over and over is to be flexible in riding the ups and downs.  Finding that balance of  pushing with tenacity and grit and also the times we need to let go - surrender - yield.  It isn't easy to yield.  However, I have found so much joy in this process of letting go and yielding to what is.  An authentic journey is about finding that balance, listening to our hearts and bodies, and finding that adaptability to cope with those harsh realities of life.  

During this time of recovery, I had a friend who sent me the sweetest email basically acknowledging that sometimes blindness (could insert whatever challenge we are facing) is hard and to be compassionate to myself.  Her kindness and compassion helped give me the space to yield and heal.  

"When we ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand.  The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief.  Who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness.  That is the friend who cares." Henri Nourwen

I wouldn't advise anyone running into an electric box.  However, the last two years when I plant the flowers around this electric box, I reflect on the beauty and the lessons learned from this experience.  Even though I reassured Steve this won't happen again he placed padding around the electric box.  This is a reminder of his love and support.  

I returned from our trip and was able to resume training for the marathon.  As I sat out and couldn't run a good friend kept telling me ... your body will remember and catch up.  Indeed it did.  

Becky, Cricket (who passed away last year) and Georgie (current guide dog) by the electric box and flowers :).   Shady morning sorry not great picture. 

Can you think of a time that an electric box was turned into flowers? Perhaps a more common phrase is lemons turned into lemonade?  A time of pushing became yielding and lessons and beauty learned in the journey?  

Diagnosis Day. Power of Support in our Resilience.

Diagnosis Day. Power of Support in our Resilience.

I was diagnosed with Retinitis Pigmentosa (a degenerative eye condition) on a December morning at the age of 18.  I was a freshman at Utah State University at the time feeling like my big challenge was which boy to date on a Friday night :).  After leaving the opthalmologist's office,  a 'good friend' (now my husband :), Steve was one of the first people I shared this new information.  We were at a dance that evening and I said ... I've got Retina something - Pigment or something like that.  I couldn't remember what it was called.  I just knew that my clumsiness, inability to see at night and no peripheral vision now made sense! I hadn't grasped yet that my vision would continue to deteriorate.  It would take a while for the diagnosis to set in.  That night I recognized the power of support and friendship in our challenging times.  He sincerely cared.   

I didn't know anything about navigating blindness and some of the challenging and amazing waters to come.  As I reflect on this day 35 + years later, the ability to reach out to others has blessed my life and helped immensely.  

Steve and I kayaking in beautiful Sausalito, we will soon to celebrate our 35th anniversary.

I selected the name of our business:  Resilient Solutions, Inc. because I love the concept of Resilience and am inspired each day by the stories of others' ability to bounce back from difficult situations.  Indeed: 

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

We each have a story.   My resilience grew as I heard from others ... their examples, their strength inspired me.  I recall shortly after my diagnosis, my parents took me to California to meet with a therapist - she had Retinitis Pigmentosa.  She had a thriving practice, and I recognized that just maybe that could be me someday.  I am touched and appreciative of my parents' amazing support and  helping me see the value in reaching out to others. 

The power of support/connecting with others is indeed an attribute in our Resilience. Reflecting on the many, many incredible people who have been on my team.    

Supportive people give us the space to grieve and work through our emotions.  They know how to listen and when to offer just enough encouragement without trying to solve all of our problems with their advice.  Good supporters know how to just be with adversity -- calming us rather than frustrating us.  Brad Waters, LCSW

Sense of Humor in our Resilience

Sense of Humor in our Resilience

I remember the first time I could laugh about something funny about my blindness. Steve and I were at the video store - I had wandered off to another isle and then gone back to who I thought was him and was being a little flirty. Only problem was ... it wasn't him! Okay yikes! After I recovered from my embarrassment, found Steve and we got in the car we laughed about this embarrassing now funny experience. Below is one of those other funny embarrassing moments.  I had to think for a few moments to remember what the actual embarrassing experience was as the memory I hold dear is the three of us laughing hysterically.  Let's do it again, girls!  (I didn't realize it but I was bringing another man into the picture (not realizing it was a stranger :)).  Poor guy!

This is a great article on Sense of Humor Tips.  It starts with a smile!  I remember when I started using the cane and felt like people were looking at me.  I decided to simply smile back. This has become such a habit now for years ... I always greet someone with a smile.   I recognized that it felt great and also was helping my awkwardness be replaced with connecting with others.

I hope you have had a good laugh today - finding something a little funny in your Resilience Journey.

The Story we tell ourselves. Blind Runner.

So, a funny story from our recent family trip to Hawaii.  We started the mornings with a relaxing routine ... some family members ran, relaxed, slept in - before we met up for a Bonsai Acai or Smoothie - stop at Teds Bakery and then over to sit on a concrete pad by the beach and enjoy breakfast.  Loved these moments together as a family.  

I love a vacation with a combination of some relaxation and some planned adventures!  As a woman who is blind, I love some routine and familiarity, too.  The running trail had some bumps -- some rather large unexpected ones.  Steve and I chatted about what was our best communication plan after a bit of a twisted ankle.  321 big bump ... little bump - we chatted away.  I thought to myself, I love love how we problem solve and are creative!  Whether it is running along a trail in Hawaii or something else ... it works!  Find a way!  

So, this last beautiful morning, we had  gone out for a run.  After my knee surgery, I'm still getting back into running!  We did some stints of walking, too.  We ran past the crossing guard (picture below) and then turned around and were running back.  On our way back Steve high fives a lady -- with my peephole of fuzzy vision I could see she was in maybe a grey tank.  Here is the funny party -- in my mind I think Steve is really friendly to her - must have been a lady we passed on the way going the other direction and this lady must have been friendly too.  Cheering each other on in running is pretty common.  I love the camaraderie of runners.  He mentioned after we had run by -- she was in her zone.  It still didn't click until we were further past when he said Natalie was in in her zone.  What I said - that was Natalie (our daughter) we ran by!  Yes, she seemed to be running in her zone -- didn't want to disturb her too much so I just high fives her.  We get back to the Air BnB we were staying with and I said Natalie I'm sorry I wasn't more friendly - I didn't realize it was you!!!  She said -- yeah, I had started running and planned to run to you -- but I ran there and you guys weren't too friendly so I kept running.

We laughed.  So, my story in my head was Steve was really friendly with another runner that we didn't know; Steve's story was Natalie is focused in on her running and so I'll just give her a high five and not disturb her too much.  Natalie meanwhile was wondering why her parents ran past her with simply a high-five.  

Picture One:  Steve and Becky standing in front of the beach in Heleiwa on North Short of Oahu.  Becky is wearing a running vest that says - Blind Runner.

Picture Two:  Becky and the crossing guard.  Fun note:  as we were crossing to go on the hike:  Pillbox; I had my cane.  He asked me some questions about my vision.  Turns out he has a good friend with a sister who has Retinitis Pigmentosa.  Small world!  

Picture Three:  Becky and my daughter Natalie (who I ran past!) smiling with our helmets on at the Zipline.  What an amazing adventure!!  

Happy Sunday!  What story have you told yourself -- that may or may not be true :)?  

What adventure would you like to try?