#RPAwareness

Many days I don't really give Retinitis Pigmentosa a lot of thought .. its just part of who I am.  It has provided humor, growth, compassion and understanding.  I have an amazing partner that supports me every day.  I often reflet as I text Steve, 'ready' when I'm finished with work and his response .. be there in ten.  Not once has he complained about dropping whatever he's doing to give me a ride home. Just be there in ten with lots of emojis :).  

Realizing it was RP Awareness Month, I've been reflecting on some of the days when the significance of Retinitis Pigmentosa was very present in my life. 

Sometimes we work so hard to move forward that in the midst of a change we don't perhaps give ourselves the love and compassion.   Today 24 years later, I'm giving that young wife and mom, who had to make a major life change some love and compassion.  Today is a busy day -- saying good bye to our beautiful daughter, Natalie before 9 clients doing what I love (Licensed Clinical Mental Health Counselor at the practice I built 11 years ago)  at Resilient Solutions, Inc.  My guide dog Georgie will spend most of the day sleeping peacefully with a nice walk mid-day.  I feel joy and gratitude.  This journey isn't easy yet the people I have met, the lessons I have learned, the strength that has come, the creativity, flexibility, patience I have learned have blessed my life.  

Each day at the office I hear beautiful self-compassion letters I've encouraged clients to write to themselves.  Here's mine for the day. 

Dear Beck, Sending some love and compassion to that mom both the young one of past years and the one today.  You keep finding a way.  You have learned creativity, compassion, and patience for the journey.  In the early years it wasn't only you trying to figure out how to get a ride -- you had two sweet children that needed to get to their activities.  You took it a day at a time with joy and gratitude.  You reached out of your comfort zone, became vulnerable, and learned amazing lessons.  It still can be hard at times, yet you do it with a smile on your face.  You got this!  Love,  Beck

February 28, 1993.   As a young mom, age 28 with a 1st grader and a 3rd grader it was time; I quit driving.   It had been something weighing on our minds.   I had restricted my driving to short, close places during the day time.  I was basically driving to the school I worked at just a few miles away and to the grocery store.  Steve was working in SLC and did not have a lot of flexibility to help with transportation during the day.  He did all he could and more, for sure. Incredible friends and neighbors stepped in and gave me rides and made that transition so much easier.  I will be forever grateful.  

As I share in my book, Look up, move forward:  For such a momentous day, Monday, February 28, was a little anti-climatic.  I didn't hand over my driver's license to a state official.  No one came and took the car away.  I just hung up my keys on their little hook in the kitchen and didn't ever use them again.  I was done driving.  Forever.  page 51.

Time again to live by my familiar mantra:  one day at a time.  Take it one day at a time in gratitude and joy.  By this time, I realized there must be a way to do this.  I had met many people who managed to live wonderful lives without driving.  We could do this.  

It wasn't an easy day to face that unknown future.  This was before uber/lyft, even cell phones to text someone asking for a ride.  It was one of those losses that you just had to keep moving forward and navigate.  

If you are reading this and facing this transition, please know you are not alone.  Also, give yourself permission to grieve and process the loss.  Surround yourself with supportive people as you navigate the adjustment.  Believe that you can do what you set your mind to do.  Know that destination you want to travel to is still there and attainable ... at times we just have to get more creative.

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

With love,  Becky Andrews

   

Retreat Scholarships

Our retreats last year were life changers.  It was amazing to experience with so many remarkable women who are blind.  We are hoping to expand our circle and make these retreats available to more women through scholarships.  If you'd like to learn more:  visit our website at:  oasiscenterforhope.com

More scholarship info is at:

https://www.givegab.com/nonprofits/oasis-center-for-hope/campaigns/rise-strong-in-your-story-scholarships

Thank you!!

Love your story Podcast

Listen here:  Love your story Podcast

Thanks Lori Lee for the opportunity to share our story.

Love Story. Retinitis Pigmentosa. Look up, move forward

Thirty three years ago on Valentine's Day Steve and I talked about marriage.  A few excerpts from  my book:  Look up, move forward.  my journey of losing vision and finding resilience: On Valentine's Day I told Steve I didn't want to date other people.  He surprised me by responding,  "Does this mean I can't date anyone else?"  My heart sank and I looked at him in shock, hoping he was joking, but he held out.  "Well, I'll have to think about it,"  he said.  I wanted to hide.  He smiled slyly as he took my hand.  "Yeah, I think I can agree to that."  He admitted that he actually hadn't been dating anyone else for months.  He'd already cleared his schedule and had been patiently waiting for me to clear mine.  (Love his sense of humor)

     Steve scheduled a visit to the Merrill Library to request my dad's permission for my hand in marriage.  In this conversation, the two  men I admire and respect the most discussed how they would be there for me in the coming year.  My dad told Steve that he and my mom would always be there to support me, and us, in the journey ahead.  (Love his respect for my parents.)

     Steve had timed my tour so that after a moment near the temple, we could drive off into the sunset, and that's exactly what we did.  (Love his romantic side :).
  
     As Steve and I pulled up to the Capitol building just after dark, the city lights twinkled below us.  He wanted to start our life together the same way  his parents had begun theirs, and his admiration and respect for them made me love him even more.  We climbed the stone steps and he led me to the third pillar.   He lifted me onto the huge stone base and took my hand.  "Will you marry me?"  There was only one thing for me to say, "I'd love to."   (Love his love and respect for his family, tradition, and always putting me on a pedestal :).

      He calmly listened every time, and then informed me, again that he loved me and that we'd be there for each other, no matter what our future held.  "I'm the luckiest guy to be marrying you,"  he'd say.   (Love his friendship, support, and belief in me.)

     When my fears returned, I borrowed Steve's courage again and again until I gained my own.  

     As I prepared for our wedding, I didn't think much about details like my dress and flowers and decorations.  My biggest concern was how I would navigate the receiving line.  Not only would I be greeting my friends and family, but Steve's friends and family, too.  I wanted very much to do that with confidence and ease.  When I shared this worry with Steve, we came up with a plan.  We would tap my elbow when someone had their hand extended, and I would know to extend my hand, too.  Simple!  Though it was a minor problem we solved in a matter of moments, it was the first of many, many systems and workabouts that we have developed over the years.  (Love our teamwork and creativity.)

     That evening each time Steve tapped my elbow served as a sweet reminder that he was on my team, for always.  

     I love when someone tells me this book is a love story.   

 #LoveStory #Rpjourney #lookupmoveforward

Guest Post

Grateful to share some of my thoughts at:  Guest blogger at Blind, bold beauty

Surrendering into Serenity

Surrendering into Serenity

(blog post from May 2014)

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.  I have no idea why the photographer had Kendall 'not quite' sit on Pantera in this picture :). 

 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.  

Now years later looking back; joy, relationships, experiences, lessons learned have come into my life from surrendering to my life which includes Retinitis Pigmentosa. And yes, there are still days when I miss hopping in that car.

Right now I am experiencing a different surrendering.  I love to run.  I have some amazing friends that through the use of a tether are my guides.  I have run a marathon, many half-marathons and 10Ks.  One of my dreams has been to run the Boston Marathon.  I missed the qualification by 12 minutes at our last marathon.  Last year while training for a Marathon to qualify, I broke my foot.  This year we are six weeks out from a marathon.  I am experiencing IT band issues.  Is it time to surrender into serenity?  Not ready to surrender on this one ... searching to make sure I'm doing all I can in the process while trying to be still and listen to what is best.  Surrendering.  Searching.  Serenity. I'm in the space of sadness on this one.  I'll be there for a bit and then will be ready to surrender if that is what is needed.  My head knows there are many new dreams I can create if this one isn't a possibility. 

What has been your experience with surrendering into serenity? 

(**This was a blog post from May 2014.  Thankfully, through lots of work my foot healed, I qualified for Boston and am still running!  Grateful that was not something at this time I have had to surrender ... just times as an injury comes.)