Creativity in the Journey

This morning took some creativity with transportation.  It's all good but as I was working on my ride to work, I found myself reflecting on the opportunity that Retinitis Pigmentosa and the transportation challenges gives me to utilize some creativity!  Its not just a hop in the car and get to work journey :)!

I love my raised dots on the dishwasher and oven.  Someone's creativity in finding a useful, simple technique that I am benefitting from.  Thank you!

With this warmer weather I want to find bright colors to wear.  I pulled out this blouse - kind of an orange I think and this green sweater.  I was wondering if they would go together when I remember that I had a necklace these two colors so they must, right!  I pull out my phone and send a photo on an outfit often to get the vote on matches or not because I like to be creative and try new things together.  I am excited for my day of work which I think is often simply helping people create some ways to express and share who they are and what they are feeling!

How are you expressing your creativity today?

If you are following our running journey :).  Today was four miles with 13 on Friday.  Countdown to the marathon:  week 11!!

Questions. Retinitis Pigmentosa. Guide Dogs.

Cricket and I are nearing our six-year anniversary as a team.  More to follow as we celebrate this special month :).  Cricket and I both enjoy celebrating special days and turning them into a month long of celebration and reminiscing.  Oh how I remember this adorable 19-month old pup coming to meet me with Instructor Toby!  She instantly won my heart.

Cricket and I walked home from church today and she walked directly to the garage door opener.  One of many of the joys of having a seasoned guide dog is there are many things she just knows :) one of which is we come home from church and enter through the garage.  As the door begins to go up, she waits until the door clears my head.  There may have been space for her to walk in but she is continually thinking about me and waits until it is opened all the way so I won't bang my head.

We walked out of church today and she recognized that she needed to walk slow carefully stopping at the base of each set of stairs.  They were icy and snowy.

Necklace and earrings from mom and dad (Coldwater Creek), turtleneck from Steve (Ann Taylor),  skirt from J Crew

Recently in a conversation with someone that I had just met - he indicated you don't look blind.  When this occurs, I try to spend a few minutes visiting about blindness.  I know many people that are blind ... there is not a look - we are all individuals. I explained that I had Retinitis Pigmentosa and our retina is like the film (little out of date analogy :) in the camera.  The outside of the eye, camera,  remains looking fairly healthy even while the film inside is destroyed.

He said,  well you are walking around with such confidence.  I shared with him the story of walking into the post office that I often frequented after getting my first guide.  The postmaster asked me if my vision had been corrected because I was now walking in with such confidence.  That is what a guide dog can do!  

As we were standing there, he also asked me why I wasn't hanging on to Cricket's harness.  I had the opportunity to explain that when she is sitting down and not working, I hold onto her leash.  If it had of been warmer and we both had some time, I would have loved to go for a short walk to show him further what a guide can do.    

I recently also had someone tell me that I had waved as they passed by -- did I see them.  If I hear a car pass by - I simply smile and wave.  I hold the hymn book with Steve even though I don't read the words of the music.  Its still fun to enjoy holding the book and singing together.  There are some things that you just do with or without sight but apparently that sometimes creates questions and presents opportunities to answer questions :) from my perspective.  

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!

Running. Retinitis Pigmentosa

I have received various comments and questions about my running blind. (I have retinitis pigmentosa.)  All running questions I will certainly defer to my friends who are much more knowledgeable than I.  Running with Retinitis Pigmentosa - perhaps I know a few things about this adventure and get excited any time that I receive an email saying ... I didn't think this was possible and I can reply back it is so possible!

I feel deep gratitude for my family & friends that are my running guides.  I couldn't do it without them.  I look forward to our time together and the opportunity to run and talk together.  I have loved getting to know them better.  It is indeed a blessing.  Each time they knock on my door, I feel gratitude and appreciation.

As I've mentioned (sorry if you've read this many times :), I prefer a tether which my guide/friend puts one end around their arm just above their shoulder and I hold on to the other end that is looped.  My friend Shannon made me the most awesome tether.  I actually ordered one online and it didn't even compare - it was too long, itchy fabric, not stretchy at all.  I have a way of losing things :) and this tether has been my friend and not gotten lost for almost two years.  Love it.  I hope this isn't sounding like too much of a hint to make me another one, Shannon :).  Seriously, though hers is the best!  Love this red, sweaty, stretchy piece of fabric!

One of the reasons that I prefer a tether is because I am used to following the movement of a guide dog and the harness -- with a tether I am basically doing the same thing with a dear friend.  If my friend veers to the left, I recognize it from their movement and veer left without us having to interrupt our conversation about funner topics!  They still do some verbal cues but much is done through following the signals I get from this tether.  We are running at the same pace - with me just a pace behind.

I run with a vest that says - blind athelete.  This is simply an identifier so that someone else is aware to possibly watch out or step aside.

Today we ran 20 miles.  I have never run this far and it was amazing.  It was hard.  It was challenging.  It was also exhilerating.  It was a beautiful morning as we started out with a little coolness in the air and ended with it being hot.   I am full of gratitude for my friends, for my healthy body, and that now we get three days of rest :)!  I also have some pretty great support at home.  Cricket pops up in the morning and eagerly follows me around and sees us off.  She is waiting by the door when we return.  It was early, early this morning and she was still there.  Steve also was there to cheer us on as we left.  Thank you to both of you :)!

I tell clients often ... acknowledge your victories!  Recognize that 'marathon' you have gone through with compassion. You did your best.  True, I'm blogging about this experience, however, my victory is not in telling someone else that I did this -- the victory happened inside me one step at a time.  What happened to that girl who walked into the stop sign and walked so cautiously for a while?  She learned how to walk safely with a cane ... then a guide dog and she is now running!   

I'm not sure why Steve just smiles when I say - okay, I'm just going to do one marathon and then I can cross it off the bucket list.  Sometimes my head is just swimming (oh, I haven't swam for a long time!) in ideas of what else I want to do in life :)!  Perhaps it is time to create that list of 50 things before 50, right!  

Jam and Juicing and Support

Natalie and I made raspberry jam during the Olympic closing ceremonies.  Tradition :). She opted to wear the simulated goggles of what it looks like with RP while making the jam. Loved it and will smile each time we pull out some more raspberry jam.  Also laugh and appreciated her patience as she reminds me to stir ... got sidetracked and was checking emails.

Steve's juicing recipe tonight was delicious!  Fresh peaches and peach yogurt hid the spinach well.  

We ran fourteen miles today.  Countdown to the marathon.  Next week is the big pre-run week --  5,10,20, and 5 mile runs!   

I got to see a dear friend and her darling kids today.  

I am reflecting on a phrase that I heard at a conference 'the power of the stretch'.  I did something today that felt like a big stretch.  I couldn't have done it without the incredible support of my Steve and our kids -- who are now amazing adults reminding me to stir and encouraging me along in so many ways!  As I was getting ready for this meeting, I kept thinking - (positive affirmation) I can do hard things.  I also thought as scary as this is - the thought of doing nothing is more scary.  (I look forward to sharing the journey in a future post.)

Do one thing everyday that scares you.  

Eleanor Roosevelt

Connecting. Retinitis Pigmentosa.

This has been a busy week full of 'connecting'. Breakfast, lunch, and dinner with friends and family. Running early in the morning and connecting is fun. I realized that our last run we were so busy chatting suddenly we had arrived back home! Love it. Breakfast with a friend this week was so much fun. Look forward to our next time :). An evening of visiting with another couple that we cherish as friends on their deck was fun. Another evening of dinner and then sitting out late on our deck with some friends connecting was fun. Even sitting by one of my good friends and colleagues at a seminar on Ethics (which was excellent, by the way) was fun. Infact, we were afraid we were being a little too noisy as we were quietly laughing and enjoying each other's company. Afterwards, a lady came up to us and commented on how I was connecting and interacting and wondered if I was simply training my dog! I loved that my friend said I was a good connector but I needed this dog! Also on tap was a wedding for a niece. The lunch was held at Herm's Inn which was cool - close to where Steve grew up.

Connecting and Retinitis Pigmentosa. I prefer smaller crowds to connect. Although, I really enjoy speaking to a large group which is a different kind of connecting. Mingling is a little more tricky such as at a reception, open house or shower. Many times I am with Steve which makes it easy ... we are mingling together. However, those times when I am alone or with a friend or family member I have found a few tips that help: As we are interacting - meeting new people; I put out my hand first and initiate that connection. As the conversation lulls and its time to move on I may ask the person I am visiting with if they see someone else that I know to go visit with. Sometimes it is challenging when someone comes up and begins to talk and might not say their name ... it may take a few minutes to try to figure out who the person is, although often by the conversation you can tell or recognize their voice. So awesome when someone says Hey Becky this is ________ and the conversation can begin without the wondering :). Dinner today at our home with family. The # keeps growing - we are at twelve. I pulled out a peach recipe that I love from a friend when my kids were very young. It has me thinking about her and wondering how she is doing and wanting to reconnect. Update: The peach cobbler is gone. It was a little soupy but I just pulled out spoons and bowls instead of the plates and forks to eat it with :). My brother-in-law acknowledged my flexibility about continuing to pull out a little more chicken as the numbers grew :). As I reflected on this post, I remembered an earlier post on connecting and some of the challenges and blessings with vision loss and trying to connect from my perspective. Hope you have a great Monday. We are running 9 this morning in our marathon training journey. I look forward to the connecting and the sense of accomplishment afterwards. How do you like to connect? I find blogging such a connection.

Travelling. Retinitis Pigmentosa.

I was asked to write in a little more detail about travelling blind. One of the questions I was asked was - You seem to enjoy going on 'sightseeing' vacations? How? Why? I understand the wonder ... you are walking through all these places that are wow - that is beautiful. Very visual. Indeed, I am experiencing and seeing beautiful in a different way.

I certainly have friends that happen to be blind that also love to travel. I also have friends that are blind that prefer not to travel. I don't think it is about blindness but more a personality, preference and affordability. Cricket and I would hop on a plane much more often if we could :)! I love new adventures, learning and exploring with my family. Over the years as I have lost my vision, I have learned to adapt to experiencing this adventure in different ways. I have also learned how much is still enjoyed without sight. I did not see the brown bears doing somersalts at the Moscow Circus, but I thoroughly enjoyed sitting next to Steve as he described the whole scenario to me. I was surrounded by people from our group that I enjoyed having conversations with and loved the laughter from the crowd as the clown teased and performed.

After the Circus in Moscow

Moscow Subway - rubbing the dogs nose for good luck (it is gold from everyone walking by and doing so)

So my personality is a love of travelling and adventure but over the years I have found some additional helpful things to make travelling enjoyable.  

1. I have some amazing tavelling partners.  Steve has become a natural as a sighted guide (infact, we were told recently we looked like we were dancing as we were navigating a busy area ... ah sweet, I  know :) and also at describing.  He is great to point out things I may like to know or have described.  I also am not real particular about knowing all the visual details.  I thoroughly enjoy the aspect of us enjoying being together whether it is nearby or across the world.  Cricket is a fabulous traveller and the two of us are always game for an adventure!  I also love girls' trips with Natalie.

2.  Generally, I try to keep it simple - clothing that goes with each other so I'm not sorting through each morning or having to ask what a certain shirt is, etc.  The last trip I wasn't too good on this one as the craziness beforehand led to some forgetfulness in packing.  It worked and forgetting makeup made the mornings nice and easy!

3.  Orientation and Organization I try to get a layout of the ship, the hotel, the resort as soon as possible.  I've also learned it takes a little while so I don't get too worried if I get lost a time or two before finding my way around.  If I'm with Cricket she is awesome to 'find the room' after a couple visits to it. Keeping items organized and in the same place is so helpful so each morning I'm not asking or searching.

4.  Exercising is grounding for me so we try to keep a routine wherever we go.  We find the gym, or a route outside to run or bike (oh so fun when we come upon a tandem bike rental) or walk.   Especially on a vacation like this past where so many new days were a new environment, a new hotel to learn, etc it is helpful to hop on that treadmill, hold on and run.  

5.  I just don't sweat the small stuff.  A cliche used often but I just relax and try not to get too stressed over feeling lost at times.  Breathe in and breathe out :).  I look at it as a privilege to be there, an adventure and smile and have fun.

There are not any travel plans at the moment, and I am hoping that changes soon :).   I love a new adventure that I experience in many ways the same as someone who can see ... relationally, touch, taste, sound, and smell.  I will always remember the musty, old smell of the Basil Church in Moscow and the beautiful music.  I will also always remember how I felt when we walked along the remaining portion of the Berlin Wall or giggling on the zipline in Jamaica (feeling a little relieved that I couldn't look down).

I would love to hear how someone else who is blind may feel about travel.  What are your tips?  Also, are there other questions someone reading might have?  This is fun to share :) -- thanks for listening!  

Marathon Journey:  8 miles this morning on Week 11 of the 18-week training.  I feel so grateful that even with my time-off due to heal from a concussion I have been fortunate to resume this goal. 

Finding Lemonade

Today I had the opportunity to be interviewed and share my experience with KSL  about Ann Taylor on Friday. I emphasized that I live my life turning lemons into lemonade. Inspite of this being a very difficult experience, I wanted simply to make sure those employees were educated so that the next time someone entered their store with a guide dog or another service animal they would be welcomed and treated with respect. Simple. Unfortunately, Ann Taylor has issued a response to those who have advocated on my behalf that is totally incorrect. They have indicated that I entered the store without my dog in harness. Absolutely absurd!   I am so disheartened that they have misrepresented what is the truth. I am blind and require the aid of a guide dog or a cane by my side to walk independently. To make it very clear I walked into the store with my guide dog in harness, of course! Why would I enter the store without her in her harness?  I am so very grateful for the beautiful blessing of a guide dog that allows me to travel independently. I am so grateful for the Americans with Disabilities Act that allows me to have access to places that serve the public - guaranteed. These are privileges that I appreciate each day of my life.  

 I have had so many valuable experiences of turning a difficult experience in the past to one of education.  I still would be more than happy to take some time and educate the employees further about the Americans with Disabilities Act and the beauty of a guide dog.  Yes I walked in confident to the store, BECAUSE I was holding on to the harness of my guide dog.  She is my eyes and gives me the joy of not having to worry about each obstacle.  I put my trust in her and can hold my head up high - look in the direction where someone is speaking and enjoy the joys of independence which includes finding some fun clothes with a helpful associate.  

In finding the humor, I sat there being interviewed in one of my favorite Ann Taylor blouses.  I must say this skirt from Banana Republic is becoming a new favorite.  I love how the associate at BR was telling me all the fun things it could go with in my closet.  She even asked me do you have a fun print belt?  Yes!  


I am not sure what I will do with all my Ann Taylor clothes.  I know right now I have a really sad feeling about them.  I want to support a place that is respectful and speaks the truth.   Deeply saddened that not only did they treat me in such a discriminatory way asking me to leave more than once but now they have indicated my guide dog was not in her harness.

Simply put - Cricket was in her harness working as a guide dog and I simply entered the store hoping to find a fun outfit when I was asked to leave more than once because of my dog.  I explained she was my guide dog and even offered to show my identification.

What is the lemonade in this journey?  Support.  Thank you.  Education on blindness and guide dogs.   I am an active wife, mother, friend, professional, runner, cyclist, and yes, shopper.  Each day is a gift and I don't have time to spend on negative energy.  I am still hopeful that Ann Taylor Senior Management will choose to take responsibility, speak the truth, and educate their employees so that this does not happen to another customer.

In my corner

Someone recently emailed me and asked me if I was always so 'up and peppy'. I laughed. Of course, not.   I shared a little bit for Seeing Beautiful.   Life is beautiful and I am an 'up and peppy' person much of the time.  However, it certainly isn't all zip-a-dee-do-dah  -- blind or not.

Courage does not always roar.  Sometimes it is the quiet voice at the end of the day, saying, "I will try again tomorrow." Mary Ann Radmacher.  I like this quote a lot.  I'm a marriage and family therapist so I am a fan of processing and sharing our feelings.  Feelings have one desire:  to be felt and listened to.  I'm a believer in self-compassion and the research states as we are kind to ourselves we gain 'space' and the ability for further growth on our journey.  I had a tough moment a few days ago where I just was frustrated with blindness.  There were some inconveniences that in that moment I was wishing weren't the case.  Steve was there and listened.  I shed a few tears (pretty rare at this point) and felt so much better!    (Tears have a healing chemical - really!).  Dr. Barbara Siple quotes a man with RP:  It is much harder going blind than being blind.

We then went for a walk with Cricket and enjoyed a beautiful spring evening.

I like this quote from Steve Hanamura:   "Find two or three people who believe in you and make sure they're in your corner at your worst moments."  I am so grateful my Steve has been in my corner for 28 years.  He tells me I'm in his corner, too.  That warms my heart.  I reflect with gratitude on the others in my corner there for me throughout the years.    

I reflect on another time a few years back when my vision had taken another drop, and I was having a moment of discouragement.  Steve and I were in the car, and I felt that support of someone that totally believed in me.  It felt like the belief he had in me was transferrable, and I could borrow it until I had regained enough on my own.

We ran together in San Diego - four miles along the bayfront.  Amazing.  Beautiful in so many ways.   

Tonight Steve and I went on our 24-mile bike ride.  Such fun.  A friend saw us and stopped for a hug and to say hi.  Made my night.  We cycled further where another friend/colleague's new house is being started.  They were there so we got to stop and say hi and celebrate this new beginning for them.  Loved that our bike ride was a social event as well.

  

Marathon preparation with my two friends is going well.  I love having a schedule to follow - 4 miles tomorrow as we build back up after our last half-marathon in April prepping for the run in September.

Thriving with Retinitis Pigmentosa

Several years ago I had the opportunity to present on the topic Tools for Coping with Retinitis Pigmentosa in Chicago. I felt like I was sharing some positive tools in the adjustment process.   A few minutes into my presentation a woman spoke up and said something that I have always remembered.  I don't want to cope.  That sounds like I am just getting by.  I want to thrive.  I thanked her and wholeheartedly agree and shifted my presentation to thriving tools.

Today Cricket and I went to the Moran Eye Center for an eye exam.  I have incredible support in my home, but chose to go alone to this appointment.  It becomes a looong appointment by the time they do all the work and didn't want Steve to have to take a day off for this -- he has done so many, many times and will do so in the future many times, I'm sure.  I would much rather us be able to take the late afternoon off tomorrow and get on the bike.  Perhaps, that is thriving.

Some thoughts on the appointment today.   I sat in the waiting room with many other people visiting a retina specialist.  Spending all morning together we got to know each other infact, when one patient finished he said good bye to those of us in the waiting area.  I visited with one patient - his first visit just learning he had a degenerative eye disease.  I listened to his story and hopefully offered some hope that he would indeed thrive and continue to enjoy life.  His wife indicated to me -- you seem happy.  Perhaps, that is thriving.  Another woman had a friend that had RP and didn't know much about Guide Dogs - I offered my number to share and told her many stories of the joy of a guide dog.  Perhaps that is thriving.  We wished each other well as we went into our eye exam, back for photographs, over to get a visual field , or an injection.  It seemed we had a sense of understanding of what this journey was like and were cheering each other on.   We were thriving in our own way.  The retina specialist encouraged me to be healthy and active and take my omega-3.  He liked that I was running.  He liked that I was using my iphone when he came in the room :).  I shared some of the unique symptoms that I have been experiencing and he confirmed that is part of RP.  I liked that and felt validated.

The cab picked me up.   He was impressed with Cricket's ability to find the door.   He asked me about my eyes, and I said I had an eye disease called Retinitis Pigmentosa.  He said -- disease -- oh that's bad.  (It was funny because generally I don't use the word disease rather condition and after his reaction I know why!)  He was chatty and soon was telling me about he just had given up on his dreams.  I said - oh that's sad!  I encouraged him to not give up on his dreams!  He said he was here just making the best of each day.  I told him he was resilient.  He liked my word :).   I realized I missed a little bit my days of riding a cab frequently in the city.  As he dropped me off at Gateway in front of the cookie shop for a raspberry cookie I asked him to wait a minute.  Cricket and I ran in (well the best we can run in :) and bought him a raspberry cookie.

Time to crash for a bit after all those bright lights and various drops put in my eyes.  Perhaps it is thriving to also take some down time after an exhausting day :).

Snippets of Creativity. Retinitis Pigmentosa.

I stood in my closet this morning wanting to be creative -- would that bright blue top go with my animal print belt, etc :) or was it a little 'off'?  Steve was off to an early morning meeting so didn't have the visual okay.    One evening we practiced using our iphones - facetime that could be used for these types of situations (if he wasn't in a meeting :).   I don't need the whole meeting voting on whether my outfit matches.  So I opted for a green top that I knew was a go.  I am loving my Sanduk shoes that my friend convinced me to get ... so comfy and fun.

I spent years with a 10-2 (how is that for awesome hours?) job while the kids were in school.   My guide dog, Pantera, and I rode the bus to work with two transfers.  It was pretty structured - take the 8:45 bus to get there by 10 (many books were listened to and friends made during those commuting days)  2:10 bus got me home by the time kids were home at 3:30 ready for all the after school activities/evening activities.  I even cooked dinner regularly at that point!  Wednesdays were my day off to volunteer at their schools, clean the house, etc, etc. Those were sweet, structured days.

When someone learns that I didn't drive while my kids were growing up they ask ... how did you do that?  Well it was a team effort - grateful for a awesome dad on the team and much creativity.  We rode the bus often, walked, they took their bikes, and at times even though it isn't easy, we asked friends.  We found creative ways to help and contribute without being able to be the driver.  I used to have a play group for the kids of the moms that were carpooling my kids.  As our kids were older, we paid a driver to help us out as well.

Fast forward to life now.  I work lots of hours - sometimes early morning, sometimes into the evening, every once in a while on a Saturday -- the joys of self-employment and setting your own schedule.  It lends to some flexibility and also some additional creativity on transportation.  This week Kendall has been home and is my driver when he is available.  Awesome.  Most of the time Steve can take me and pick me up from work.   Later start days -creativity comes into play.   Sometimes it means getting there early (which is okay, there is always something to be done), sometimes it means calling a cab, or sometimes it means asking a friend for a ride.

Retinitis Pigmentosa hasn't stopped me from doing something ... it just may mean that I need to get a little more creative on getting from point A to point B, in finding that fun outfit to wear, in finding a way to run,  ... :).

Running:  Today was 3 miles.  We are on our 18-week training plan for the Marathon.  So cool!  Creativity.  I think of my friend that sewed my tether.  So special with great memories.  I think of my two friends who run with me now.  I recognize that because I have had to be creative with Retinitis Pigmentosa I have met many wonderful people and have some great friends.

Snippets of Adjusting. Retinitis Pigmentosa.

We have been rediscovering past journals and reflecting much on what we have learned through this Retinitis Pigmentosa Journey.  We've been reading through and remembering different challenges, bumps and bruises, growth, and laughing.  There are positives and challenges to losing one's vision gradually versus suddenly.  At a conference a speaker worded it - With every nose dive of vision loss, I lose something I love.  I would add simply then, it is finding new ways to love what is lost.  Retinitis Pigmentosa lends itself to gradual adjustment vs. sudden adjustments:  losing the ability to drive, losing the ability to enjoy reading by print, losing the ability to recognize faces, losing the ability to distinguish colors, came gradually in their own time.  It comes in http://cruisinwithcricket.blogspot.com/2010/08/snippets.html">  snippets  of adjusting.  Also, one is blessed with snippets of growth and learning new alternative ways on a more gradual level.   In my journal I wrote a snippet about one of the first blindness/problem solving that Steve and I made together.  It was for our wedding reception.  At the time my challenge was no peripheral vision and thus, knowing when to put my hand out to shake our guests was the challenge of the day.   The thought of hundreds of people walking through a reception line was feeling overwhelming.  Our plan:  he would gently touch my elbow when their hand was going out and I would know to reach out and shake hands.  So easy and helped what seemed like a challenge be a special evening and on our way to problem solving.  Twenty-eight years later, this is still our system and a subtle clue when we are in many social situations.

Today we ran five miles on our journey of preparation for our marathon.  Perhaps, there are some similarities with Retinitis Pigmentosa and a marathon.  They both seem to really be helped by preparation and there is both challenges and joys in the journey.

Little Things. Retinitis Pigmentosa.

One of my philosophies on life in general and particularly in the blindness journey is to learn, learn, learn.  Be open to ideas and if something isn't working to seek out options and other ways to do it.  I have learned time again that when something isn't working there is generally a new technique or tool that helps immensely.  Often it is a little thing that can make a big difference. Through the years Steve and I have done much brainstorming and problem solving to have things running pretty smooth.  He is incredible.

Last Thursday morning I had a teacher, who assists individuals who are blind - she is blind as well, come to my home.  I have loved getting to know her.  She once again was fabulous and so helpful.  We walked through my home - my routines from organizing the kitchen, using the stove, organizing my clothes, make-up, etc.   She gave me some further tips on using my ipad to record some of those frequently used instructions on the back of boxes, etc. She marked our appliances with further raised dots.  I forgot how helpful that can be!  It also gave me a little boost of confidence as I told her different adaptive ways I did things and she would say - that's a great idea.  She loved that my closet had a coral section :) and my jewelry organization was also a hit.    As we walked through the house I was able to share and describe with her different pictures on the wall - mostly family and places we have visited that have special meaning to us and sayings - our house has many sayings throughout.  She indicated that she loved how our walls were emotionally connecting.  Loved that phrase and the new little tips she shared will mean a lot and also felt a burst of confidence knowing that the techniques I am doing are mostly working.  I just need to use my oven.

We ran 4 miles this morning.  Beautiful.  Crisp Air.  Talk of a Marathon to come with friends.  Busy Monday at the office with good things to share.  

Teamwork. Running. Retinitis Pigmentosa.

My legs are still slightly telling me that I completed a 1/2 marathon on Saturday.  Trying to put words into the experience. Deep Gratitude for my friend who ran 13.1 miles with me every step together in stride.  (not to mention all the training and being my guide from the time we got out of the car to crossed the finish line and reunited with Cricket!)  As I was running along chatting or listening at times it would cross my mind that she was keeping track of not only what was in her path but mine as well. A quick left for a sudden pot hole in the road, etc, etc, etc,. Forever grateful. Gratitude for my body for meeting the challenge. Gratitude for a beautiful organized course through tulip fields, waterfalls, golf course, with the mountains on each side of us. Visualizing it was joyful. It was a course with many twists and turns, various road textures - gravel, cobbled sidewalks, and road. We did it. Kind people cheering us on with many commenting on our teamwork.

We did it.  

My two biggest fans were near the finish line cheering us on.  

Later in the day we enjoyed a beautiful hike with the family.   I'm a lucky girl.  

Fun Fashion, Plan B, & Special Songs

My friend and I went shopping to one of her favorite stores -- All Tucked in. I was there to cheer her on and tend her kids while she found something with her gift certificate. Well, these cute little shoes were 50% off so Lisa felt like they had my name on. I think I'm going to love them!

Special evening at the Salt Lake Temple with our friends.  Can you tell it was just a little chilly and that I'm hunched over saying hurry Steve take the picture :).  Yellow and grey are the colors again!  This skirt bunches up and is just a little short so I think it will go in the pile of -- just doesn't work!  I'm trying to simplify and have hanging in my closet clothes that I love.    

Today was one of those days where I really longed to get in a car and get my to do list done.  I recognized early in the day that I needed to accept that plan was not going to happen - funny , that hasn't been the case for almost 20 years, now but sometimes sure do miss this part.  So, I got busy cleaning, organizing, decluttering some areas and getting some work done.  Cricket and I danced to our song  over and over.  I know a little sappy but she loved it and so did I. Listen to the words. It just fits.  One of my favorite lines - 'old webster could never define what's being said between your heart and mind' :) This will always be a special song for us.  As we were walking down after sharing at the Holiday Luncheon this was playing with amazing clips of guide dog teams.  Chills :).   Yes, Pantera and I also had a special   song too .

Have a great weekend!

Resting :) with some Therapist's Thoughts

The next two days are rest days for preparing for our 1/2 marathon on Saturday.  I've been telling Steve I'm on rest mode and he just doesn't seem to believe me :)!  Sounds kind of nice for a moment but really would be so hard if you had to, right!

What is it with grey/yellow combo that is just so fun?  Whenever I wear the combo it seems someone tells me its a good combo so I just keep going with it.  I think my new little purchase, yellow belt, from Target is going to be put to some fun use this summer.   This little yellow tee from Banana Republic years ago has been a hit as are these old white capris from Old Navy.  This grey cardigan from Ann Taylor is a favorite - I wish I had it in other colors.  I recall someone telling me that after they went blind they generally just wore black.  I love black and that is great if that is what you like to do, but I have found my love for colors and dressing up has not changed with blindness -- just don't need the mirror like I used to.   I'm kind of excited that I actually got my belt in this picture that I took :)!

How do you give someone the gift of self-confidence, belief in themselves, and not worry what others think?  I work on this journey each day with clients.  One client told me today, you seem to be at peace.  I said, well I have the opportunity to share  this message with so many clients - perhaps a little bit stays with me :).
I also believe that is one of the gifts that Retinitis Pigmentosa has given me.  I laughed remember running into a neighbor at the grocery store years ago shortly after I had quit driving.  She said, wow I don't think anyone would want to be you.   When you think about that statement ... how freeing!  I just had to come from a place of feeling peace to be myself.

Ponder:

I exist as I am, that is enough,
If no other in the world be aware I sit content,
And if each and all be aware I sit content.  Walt Whitman

Deep thoughts ... maybe I better go rest :).

Running. Retinitis Pigmentosa. Gratitude.

My friend and I ran 6 miles this morning in preparing for our 1/2 Marathon in 7 1/2 weeks!  The back three we had the wind, and it wasn't easy. We did it. Its such a sense of accomplishment, and I feel such gratitude for friendships and a healthy body that lets me experience this journey. 

There was a time with Retinitis Pigmentosa where I cautiously navigated my walking ... prior to cane training and ultimately enjoying the freedom of a guide dog. So, to be able to RUN is pure joy.

There was a time with Retinitis Pigmentosa where I was on a medication that left me dehydrated and catching my breath. To now be able to RUN is pure joy.

There was a time with Retinitis Pigmentosa where I  had a harder time asking someone to guide me and help me run. Now, to RUN with a friend is pure joy. I love the friendship and conversation.

--Break in my day since posting this where Cricket went to the vet and her stitches were taken out. Yay! She is happily chewing on a bone. I'm so grateful she will be returning to her work as a guide dog sooner than later.

Later in the month, I will be attending a workshop in Atlanta entitled Healing from Within: The Use of Positive Psychology and Core Character Strengths in Coping with Loss and Grief. Doesn't that sound interesting for Cricket and I to enjoy and learn! We received an email asking us to take the  VIA Survey of Character Strengths.    If you have a chance, take the test.  I'd love to hear about your experience!  I was really surprised at some of the character strengths that reached my top five. There are 24 strengths and understanding where our strengths lie is fascinating. I keep having lightbulb moments about it all and I haven't even gone to the workshop yet :). I'm so excited to attend the conference. (One of my top five strengths is zest, enthusiasm, and energy if you hadn't guessed.) Thankfully, Cricket should be up and guiding by then as well.  Yay, Gratitude for a working girl, again.   (Gratitude was my top strength on this test.)

Mingling. Retinitis Pigmentosa

Steve and I recently attended an enjoyable evening with one of the organizations he belongs to with his employment. Another one is coming this Saturday evening. I will probably wear the dress I wore to the Guide Dogs for the Blind Holiday Luncheon. Cricket will probably change out into a black collar or maybe keep on her silver. We'll see what her mood is for the evening :).

Mingling and Retinitis Pigmentosa are not the easiest combination.  There are many visual cues that people catch in this type of social setting that I simply miss.  Its so much easier with a cane or guide dog as others have an easy visual cue that I am blind.  I recall one dinner several years ago that we were attending.  For some reason I didn't have my guide dog with me, cane was in my purse (its pretty unhelpful there) and a gentleman came up to me and started visiting and apparently he was holding his hand out to shake mine.   Steve saw the situation unfolding and helped us out of this awkward moment that I was unaware that it was an awkward moment.   Mingling is a part of life with church, work, social situations. 

Some of my tips are:  *Smile and be friendly and generally people will come talk to me rather than me finding someone, *Engage in the conversation - get to know them, *If it is an event where I know others, I may say to someone I am visiting with -- have you seen so and so, can you help me find so and so.  This becomes a natural break in moving on to mingling.  *Reach out my hand first to shake hands.  Let the other person find my hand.   *Brief introduction of Cricket so we can move on with the conversation and other topics.  However, she is often an intriguing topic for others that haven't had an experience with a guide dog and I am happy to share her amazingness.  Recently at a dinner with a table of people that had never met a guide dog before, the question came up - now just what does your guide dog do for you.  That was a conversation for a while on Cricket's amazingness :).

Preference is to sit down with a group of friends at a table and enjoy an evening, but I know mingling is part of so many events and although its a little challenging, I wouldn't miss.  We have fun. 

Educating. Retinitis Pigmentosa

Tonight I spoke to a group of Scouts earning their disability merit badge.  They seemed to enjoy wearing my goggles and walking through an obstacle course with a cane.  They also set up a great obstacle course for me and Cricket to walk through.  Great work, Cricket.  Thanks, Natalie for joining me. They asked some good questions. I hope they got the message that a guide dog or cane gives one lots of freedom and also that a person who is blind is simply a person who is blind.  I was so proud of Cricket today.  Miss Princess Paws, Cricket, walked well through the snow packed sidewalke in our quest to buy a Diet Coke. 

Great news. I have been wearing my brace less. The doctor said it would be helpful to start moving it around (places where I could almost guarantee I wouldn't fall :). Its nice to not wear a brace for the obvious reasons and also, this fun yellow sweater that I had bought on clearance at Anthropologie has had to wait in my closet. It is such a fragile sweater that I knew it would snag all up with my brace. I'm holding cute little Dahlia with her legs out so she doesn't snag my sweater. 

I left work today so inspired by my clients.  Wow.  One shared a quote that I enjoy:  

Courage does not always roar.  Sometimes it is the quite voice at the end of the day saying,  "I will try again tomorrow." Mary Ann Radmacher 

Simplicity. Shopping.

I quit driving on Feb 28th - many years ago.  Why that date?  Well, I had gone to the opthalmologist and he said it was time (actually past time to say goodbye to a restricted driver's license)   Random - I was wearing a light blue Mickey Mouse sweatshirt (we had recently taken the kids to Disneyland) when a neighbor came over and asked so how are you going to be a mom.  She also asked are you  really going to sell your car, because what if you change your mind.  We still laugh about these comments (she meant well) and wonder if I should just change my mind about this Retinitis Pigmentosa (RP) thing.   

We had prepared for this day.  We lived in an awesome location -- we walked to church, school, grocery store, dentist, bank, caught the bus two houses away.  Our neighborhood decision made our life so much simpler while raising our family.  Still, I remember when I quit driving the adjustment of not running to the store to pick up this or that.  For years, I was so organized with my shopping.  I had a list designed in the way the grocery store was laid out.  A consistent day that I went grocery shopping with a friend/driver/family member changed this time of crisis into such a simple routine. 

Now, years later Steve has a more flexible schedule, and we seem to grocery shop on a more random basis.  I still find it very helpful to keep a running list, now on my ipad,  of what I need so when I make it to the store I am somewhat organized.  I'm contemplating going back to those super organized days or maybe not :).  I seem to be at a different phase in life on what helps make life simple.  Often take out after a busy day at the office = simplicity.

What is on my running list of items? A solid black coat - fabric that doesn't catch dog hair (now is a great time to find a coat for a fabulous bargain... end of January even better), some more running socks,  Cricket food,  Trop 50 juice (pomegranate - my favorite), and a couple new plants for the office.  (I like having live plants at the office but struggle with the keeping them alive aspect of this concept.)  Steve is generally aware of my running list items, too so if he comes across that cute black coat he can make that purchase :).

Simplicity in shopping for me is some organization and some flexibility.