Dear Universe

I was standing in the closet looking for a t-shirt to match my workout capris.  We all know that time on the treadmill feels much better when your clothes match.  Since tomorrow is laundry day and I've done my time on the treadmill 7 out of the last eight days, my clothing choices were limited…as in I had one pair of clean capris.  And as it turned out, my choice of a matching t-shirt was equally limited.  I pulled out my Human Rights Campaign shirt that boldly says across the front, ALL LOVE IS EQUAL.  

I turned to Weber and said that I was not sure that I should wear this shirt to our local recreation center.  Though Dallas county and the city of Dallas are forward thinking, the first tier suburb in which we live is known for is backward views on many issues of social justice.

But the t-shirt matched.

And, today marks the two year anniversary of the Supreme Court’s passing of Marriage Equality Act.

And why did I care what anyone thought of the message on my t-shirt?

I wasn’t worried at all about anyone’s opinions of me; I was concerned about someone trying to engage me in some kind of heated discussion.  I wanted my physical workout on the treadmill to get my heart rate up, not an intellectual workout.  

Then I decided that I was up for the challenge should the opportunity present itself.

Surely no one would say anything to me.  I was only entertaining a bunch of ridiculous “what if” scenarios in my head for reasons that I can’t even really explain.

Off to the city recreation center we went.

I have a favorite treadmill.  It’s in the middle of the row of eight.  The fact that it’s in the middle is not the important thing here.  What's important  is that it's right under the air conditioning vent.  This spot is almost always available when I go to workout.  It wasn’t today.  I should have known right then that the universe was trying to tell me something.  I opted for the treadmill on the end at the far left, right beside a major thoroughfare around the gym.  It’s a treadmill I’d never used before today.  An opportunity for a new perspective.

I put my headphones on, deciding to walk to Mary Chapin Carpenter’s album The Age of Miracles today.  Is “album” even still a part of mainstream vocabulary?  I got the belt moving on the treadmill and hit play on my phone.  I was on my way.  I felt good.  I was moving at a good pace.  I was enjoying the music.  I was, as they say, in the zone.

It was about thirty minutes into my walk/run.  I was hot and sweaty (since I didn’t have the benefit of normal A/C vent).  My hair was falling out of my ponytail and was sticking to my face.  My legs needed to be shaved.  But, one of the perks of having albinism is that my leg hair is white too so unless it glimmers in the sunlight, no one can really see it so I can get away with the stubble that you dark-haired ladies can’t. :-)  I tell you all of that to give you a visual…

Then next thing I know, a gentleman, probably in his sixties but I’m terrible at judging age so maybe not, rolled up right beside my treadmill in his wheelchair and was looking up at me.  My knee-jerk thought was Oh great.  Here comes the comment and discussion that I so didn’t want to have.  I was brave and polite and pulled off my headphones and said “hi.”

He hesitated for a split second and then said, “You are very pretty, especially your hair.”

That is so not what I expected to hear that I all I could say was, “Thank you.”  

He rolled himself over to a weight machine and I put my headphones back on and walked another two miles.

I don’t really know what that interaction was all about.  I don’t know what he saw.  I don’t know why he felt compelled to say something to me.  I don’t know anything about him.  What I do know is that what he said was not at all what I expected to hear.  I had mentally prepared myself for a negative interaction, one where I would be on the defensive.  In so doing, I was totally unprepared for the interaction that I had.

Dear Universe,

Thanks for the lesson.

Sincerely,

Me

The Many Shades of Friendship

It's been a whirlwind of celebration and good times around our house for the last five days or so.  I know how blessed I am to be able to say that as there are so many people in the world who have nothing to celebrate and not much to call good in their lives.  My hope is that I'll never take any of the gifts of this life for granted.

A good friend flew in last Thursday to spend a few days with me.  It just so happened that Thursday June 8th was National Best Friends Day.  I got to celebrate well!   It was also the randomly assigned date that I was given to write a daily devotion to be shared worldwide by my church.  I have written here before about how blessed I am to have so many wonderful people in my life to call friends...people near and far, old and young, male and female.  To be assigned National Best Friends Day as the inspiration for my devotion was perfect!  I'm not sure that I can call any one person my "best friend" because all of those that I call friends are near and dear to my heart and all add their own unique gifts to my life.

Here is part of the devotion that I wrote on and for National Best Friend's Day.   It is based on the  passage from Ecclesiastes 4: 9-10

It's better to have a partner then to go it alone.  Share the work, share the wealth.  And if one falls down, the other helps.  But if there's no one to help, it's tough! 

A Word of HopeToday is National Best Friends Day, "a day to honor that one special person you call your “best friend”.   This day is a time to show them how much you appreciate them, how special and important they are to you and how you cherish their friendship."
As an only child and thus never having a sibling relationship, my friends have always held an extra special place in my life.  Whether swapping my favorite marbles on the elementary school playground, lamenting the woes of adolescence, or sharing the joys and sorrows of adult life, friends have taught me that it is most certainly better to have a partner than go it alone.  In many circumstances of my life, I know that my friends have been the hands, feet, and heart of Christ.  And like Jesus, they are the ones who have shown me unconditional love, often when I didn't deserve it. Friends are those people with whom we are comfortable and willing to share trust, support, sympathy and empathy.  But, how often do we think about those particular words when we think about our friends?  
The Urban Dictionary defines friends in this way: [Friends are] "people who are aware of how retarded you are and still manage to be seen in public with you, people who make you laugh till you pee your pants, people who cry for you when one of your special items disappears. When you don’t have enough money to get an ice cream, they chip in. [A friend] knows all of your Internet passwords. They would never make you cry just to be mean."  
Though this definition may seem a bit trite on first reading, it exhibits trust, support, sympathy, and empathy.  It is, at its core, the picture of what we value most in those we call our best friends,  painted in a way that most of us can easily relate.

Yes, the official day to celebrate our best friends has come and gone; however, we can and should be thankful for those people and our relationships with them every day.  

Who are your best friends?  Do you see the hands, feet, and heart of Christ in them?  Can they see and feel Christ in you?  Do you see your friends as a gift from God?  Think about your friends today.  Tell them how grateful you are to have them in your life.  Thank God for them.

If I had to name one best friend, it would be Weber.  He is the one that knows everything there is to know about me - the good, the bad, and the ugly - and is still willing to go to sleep next to me every night and wake up and stand by my side every day.  I'll be the first to admit that some days that is not easy!

One of the reasons that my friend Joni came to visit was to help us celebrate Weber's 60th birthday.  I have to say up front, he is not a birthday party kind of guy.  His dislike of birthday parties is less about the aging thing and more about the party part.  We had to have a little "come to Jesus" discussion about how life is a gift and allowing your friends to celebrate your birthday is a way to say thank you for that gift of life.

We spent Saturday evening, his birthday, surrounded by friends, family, and barbecue.  It's hard to be grumpy when your world is filled with such awesome people!  Banana pudding, instead of birthday cake, helps too!

And as if Saturday night's festivities weren't enough, we reconvened with many of the same people Sunday morning in church  to worship together and afterward to break bread.  Several of us were together again Sunday evening to watch the Tony Awards.  Yep...that's what friends do - celebrate together, pray together, eat together, relax together.  And sometimes we share hugs, tears, laughter, and hard truths.  Oh...and banana pudding!

Today, June 13th, is  International Albinism Awareness Day.  Though albinism is something I have lived with for my entire life, it is not something that I have ever thought deserving of a celebration.  It wasn't until about seven years ago when I became active with the National Organization for Albinism and Hypopigmentation (NOAH) that I allowed albinism to be more than just a part of me, but a part of me that is deserving of a celebration every day.

Through NOAH, I have many new friends with whom albinism was the commonality that brought us together, but our friendships are bound together by the things mentioned above - trust, support, sympathy, and empathy.  We are now the kind of friends that will cry together when one of your special items disappears (like those stitches on your sock gusset, Joni), lend money for ice cream (Becca), and hopefully will never make one another cry just to be mean!!!  Stealing your salad fork does not count as being mean, Becca! :-)

Here Joni and I are rocking our friendship and the albinism twin thing.  Lol!  We got to share most of International Albinism Awareness Day together before she headed home.

Thank you to everyone that I am blessed to call friend.

January 8-16: Cleaning, Friends, and Tornado Sirens

Only sixteen days into the new year and so many good things have already happened!  Yes, I have taken a week long hiatus from writing here; though that was not exactly what I had planned, it is a good thing.  Last weekend, while on retreat, I felt compelled to write even though I was not supposed to be.  And this week, I have been at home with access to my computer, but other things were more important.

I returned home from last weekend's retreat tired, but ready to take on some tasks that I had been putting off for way too long.  Our guest room has been a storage unit rather than usable space in our home since I brought things back from my parents house over a year ago.  I have had lots of reasons excuses for not going through all of the boxes, but it was now time.  I needed a "good" reason to get started and get it done.  I finally had it!  My friend, Joni, wanted to come visit from Wisconsin for a few days.  Asking her to sleep either on the couch with the dogs or on an air mattress on the floor did not seem very hospitable; I had the impetus I needed to attack the guest room chaos and get it done!

It is hard work going through several generations of family papers trying to decide what to keep and what to toss.  I had lots of photos of people that I could not identify in places that I could not identify.  I finally had to tell myself that if the photos did not have meaning to me, they weren't going to have meaning to anyone else.  With this realization, I was able to part with a lot of them.

Then there was all of my dad's Navy stuff...his sword, medals, uniforms... It's funny.  I know that my dad was career Navy and I am proud of his service, but that is not how I knew him.  To me, he was not a Navy Captain, he was my dad...the guy who gave me piggy back rides, taught me to garden, talked to me about Carl Sagan books, educated me about investing, tried to convert me from a Coke drinker to a Pepsi drinker,  did not share my political views, called me Peanut, and shared my love of Sudoku puzzles.  And this is how I want to remember him.

I hung his sword on the wall in our library, sorted and packed the medals in a box, and safely stored them in the back of a closet.  This is not a permanent solution, but it is progress.  It is the best I could do right now.

We did the same sorting and thinning of boxes of stuff that Weber had.  Again, we are not done but now have labeled boxes. The most difficult part of this whole process is now done.  Our hands have touched every piece of paper and we know what is in each box.  We also sent items to other family members, various historical societies, and other agencies.  Our goal is to make sure that the things that we have that we are choosing to part with go to people who will appreciate them.  When Weber and I got married and combined our belongings,  our test for whether something stayed or went was, "Is it useful, beautiful, or joyful?"  If the answer was "no," then away it went.  We did have to think a little harder before answering this question during our latest round of purging.

Thanks to our friend Paul, who helped us rearrange some furniture, hang some pictures, and built us shelves in a closet, the house was in the best shape it has been in a long time when our friend Joni arrived.  Perhaps even more importantly,  I felt good emotionally about all that we had accomplished.  I was exactly where I needed to be to fully enjoy our visit.

I keep coming back to the importance of friendship.  I was touched and honored that someone wanted to spend their vacation time with us.  Of all the places to go on a vacation...Dallas...to spend time with us?  My heart knows that when push comes to shove, it is the who that is most important, not the where or the what.  My head, however, has a hard time really embracing that notion, especially when I am the who.

Thankfully, the frigid temperatures from the previous weekend gave way to springlike weather.  We were able to have a meal from the grill and also walk around downtown Dallas and visit the Sixth Floor Museum, the old Texas Book Depository, the building from which Lee Harvey Oswald fired the fatal shots at JFK.

(Ignore Snorri.  He thought it was still 17 degrees outside.)

Joni and I also spent a lot of time knitting together.  I am doing well with 2017 goals!  More knitting and a clean guest room!

I did have to start my Temperature Blanket over twice; the first time because an animal accidentally pulled my first few rows off of the needles and a second time because apparently my knitting skills are rusty and I made some stupid mistakes.  I am happy to report that now I am caught up on my blanket and I'm planning to roll smoothly through the rest of the year one row at a time!

On Saturday, Joni and I met up at the mall with another one of our pale pals.  We behaved fairly well while we were out unsupervised! :-)

On Sunday (yesterday), Joni got a taste of ugly Texas weather!  We had a terrible thunderstorm with high winds and the threat of tornadoes.  The tornado sirens did go off and we spent a few minutes huddled in the "safe room" with all of the animals.  Isn't that how everyone wants to spend their vacation?

I truly enjoyed my time with Joni.  I did take time out of each day to take my daily picture, but I did not want to lose any more time, so I chose not to write here.  I am happy about that.  The memories that I have of cursing knitting mistakes, making (and eating) cookies, downing a six-pack (of Diet Coke) every night, and getting to know each other a little better are far more meaningful than any words that I would have written here.

For that, I am thankful...

Friends are the siblings God never gave us. Mencius

True story...

Friday evening we went to a production by our local community theater.  Joni and I were in the restroom at intermission.  An older woman asked, "Are you girls twins?"  We both answered, "No."  She then said, "Oh.  Just sisters."  Again we both said, "No."  At which point she headed into a stall a bit confused.

Who Do You Say That I Am?

I just watched a story on the news about former Olympian and six-time gold medalist Amy Van Dyken-Rouen, now paralyzed from the waist down after an ATV accident in 2014, who is upset because a lock Dallas hotel employee referred to her as "a cripple."  Cripple is apparently an offensive term.  Interestingly, nowhere in any of the reports that I have read on the incident does she ever say how she prefers to be called.

This argument over how one refers to a person’s “differences” is a hot topic in the albinism community as well.  Many people find being called an albino offensive, preferring rather to be called a “person with albinism.”  For those that prefer the latter, it is the statement that they are a person first and their albinism is of lesser consequence, that they find appealing.  In short they preferred to not be defined solely by their albinism.

Albino is a scientific term defined as “an organism exhibiting deficient pigmentation; especially a human being that  is congenitally deficient  in pigment and usually has a milky translucent skin, while or colorless hair, and eyes with pink or blue iris and deep red pupil."  We'll leave the "colorless hair part of that definition alone since I don't really know what that means.  I am fairly certain that if I put "colorless" in the blank for hair color on my DMV ID or my passport application, it would be rejected!  Colorless as a hair color option may be more appropriate for my bald husband.  If he were to shave his facial hair, his head would be bald, colorless with regard to hair.  FYI, my hair color is listed as "blonde" on all of my government documents.

Back to the original discussion...

I am an albino.  That is a non-negotiable fact.  Am I offended when someone calls me an albino?  No.  It is what it is.  Being called an albino is no different than being called a wife, a mother, a professor, or even a b...ch.  Like albino, all of those other words describe only a part of who the complete person that I call me.  Yep...I am part b...ch.  I don't get upset when my girls call me mom, or my husband calls me his wife, or my students call me professor, so why would I get upset because someone calls me an albino?  My albinism is much more obvious than my marital status or my level of education; therefore, it seems perfectly logical to me that that aspect of who I am will be the first thing noticed by a stranger.

And what does "person with albinism" mean anyway?  "A person in the state or condition of being an albino."  Really?  So people prefer to be thought of as a person in the state of being an albino rather than just being thought of as an albino.  The seems to me like splitting those colorless hairs!  If I am going to be referred to as a person "in a state," I want to be in the state of sleep, or happiness, or serious caffeination, or relaxation, or joy, or excitement, or maybe Alaska...not the state of being an albino!  I prefer to be just an albino in some other state/

I actually find being called handicapped or disables much more jarring than being called an albino.  A disability  "places restrictions on an individual' stability to participate in what is considered 'normal' in their everyday society."  Any definition that relies on the word "normal" is problematic from their get-go.  Who is qualified to define normal?  No one that I know.  I can't drive.  Is that abnormal?  No person without a state-issued driver's license can drive.  Does that make all such persons disabled?  I can knit.  I can take photos.  I can write.  I can analyze music.  I can read and write cursive handwriting.  Those are all normal things in my environment.  Does that mean that all persons who can' too those things should be considered disabled?  If we agree that all persons have unique abilities, then I think that we must also agree that all persons have unique "un-abilities," things that we have no inclination or ability to do, but that do not render us "disabled."  My abilities and un-abilities may or may not be related to me being an albino.  Why does it matter one way or the other?

And then there is handicapped..."having a condition that markedly restrict's one's ability to function physically, mentally, or socially."  Socially?  My abilities to function socially may be restricted, but that has nothing to do with me being an albino.  It is to do with the fact that some people just get on my nerves.  That would happen regardless of my pale skin, colorless hair, and eyes with pink or blue iris and deep red pupils.  Perhaps this is due to the b...ch part of me.  I may navigate the world differently than those of you who are not albinos, and probably those of you who are too, but I do navigate it...perhaps even more efficiently than some with green or brown eyes and colored hair.  To do things differently should not be what earns me, or anyone else, the label of handicapped.  I prefer to think of myself as a problem solver or creative thinker, not as a handicapped individual.

I am still left with the question of how Amy Van Dyken-Rouer would like the world to recognize the fact that she is confined to a wheelchair.  She find cripple...a person who is unable to use one or more limbs, offensive.  Is paraplegic...a person whose lower limbs are paralyzed due to disease or spinal injury...more acceptable?  Since her devastating incident at the Texas hotel in which she was called "a cripple" occurred while a hotel employee was assisting her to her room, is she comfortable with being called disabled or handicapped?  How are strangers supposed to know what an individual's personal "hot button" may be?

There are always going to be people in the world who say things just to be mean and insulting.  Such persons can call me an albino or a person with albinism and their tone and the context of the words can be equally insulting and painful.  I firmly believe, however, that the majority of people who use a word or description that may be construed as offensive by some, do so unknowingly and unintentionally.  They simply just don't know what to say.  For those of us that are wheelchair bound, or deaf, or blind, or autistic, or albinos ( and our family and friends), the one thing that we can do to help the world grow in understanding, respect, and compassion for us us to use what could be negative circumstances, such as the one in which Amy Van Dyken-Rouen found herself, to educate those with whom our paths cross.  Is this always easy?  No!  Is it always effective?  Most certainly not!  Is it worth the effort to try?  Most certainly, yes!  If we can change the perception of one or two people, that is one or two people who will show compassion towards others and that will lead to a better world for all of us.

A Whirlwind Week

The past week seems to have flown by!  Last weekend we were in Baltimore because I had a NOAH board meeting.  Though it was a quick trip and I had little free time, I enjoyed the getaway and change of scenery.  Weber and I did have a bit of time to wander around Baltimore's Inner Harbor on Friday afternoon before my meeting began at 6.

It was interesting to see another lightship.  My dad was instrumental in restoring a similar one, The Overfalls, in Lewes, DE.

We didn't have time to do the on board tours of the Chesapeake or any of the other boats in the harbor. That will have to wait until our next trip to Baltimore.

U.S.S Constellation, constructed in 1854

Below is a seriously blown-out image of the Constellation.  I forget to check my camera settings before I shot the image.  It is so "not right", but there is something kind of magical about it that I like. Don't ask me why.

We had a nice lunch at an Irish pub overlooking the harbor.

After lunch and a little bit of shopping, where Weber got a new hat, we headed back to the hotel to rest a little before my meeting began.

The Friday night meeting only lasted about two hours.  It was during that time that the horrific events in Paris took place.  We emerged from the board room to see the chaos unfolding on every TV in the hotel.

While we were touring the city in the afternoon, we passed by the World Trade Center in Baltimore.  In front was a piece of mangled steel, a remnant of the devastation from the terrorist attack on the The World Trade Center in New York.

I had no idea when I took this photo that in only hours terrorists would again strike in one of the world's major cities.  We flew home early Sunday morning.  The security lines were long and slow at the airport and there seemed to be more TSA agents than usual.  I suppose this could have been my imagination or perhaps a coincidence.

Despite the uneasiness in the world, Monday morning came and we routinely started our school week like every other one this semester.  When I got to school, however, my students were not interested in analyzing Beethoven's Moonlight Sonata or writing four-part chorales; they wanted to talk about what was going on in the world.  My job is to educate; sometimes that means setting aside my own lesson plans and "teaching" something different, something that would never be included on any course syllabus. I can answer the students' questions about what chords Beethoven is using, or how to avoid parallel fifths in part writing, but I cannot answer, "Why did this happen in Paris?" or, "Do you think we are on the verge of a Third World War?"  I don't know.  For the duration of that discussion, my students and I were on equal ground, no teacher and students, only people waiting, wondering, and praying about what the future holds.

All week long, the flags on campus that flew at half mast were a constant reminder that we are a grieving world.

On a different note, here is a twirl and haiku from this week...

"The Kiss"

Carefully chosen

To express the hidden me

Words and images.

The cat has decided that the puppy is no threat to her.  Honestly, Piper has absolutely no interest in Frankie.  Though Frankie will never admit it, I think that hurts her feelings a little bit.  With all of the unrest in the world, it is comforting to have peace at home!

Little, dog, big dog, medium dog, and cat happily co-existing!

And the week ended with me making pumpkin butter, a sign that the holidays are fast approaching as pumpkin butter is one of those things that I seem to only make around this time of year.  For the recipe, visit www.pixelsplatesandlols.blogspot.com

Despite all of the ugliness in the world right now, there still exist many reasons to be thankful.  This week I am thankful for safe travels, caring students, loving family and friends, my four-legged furry family members, a forgiving heart, time to make pumpkin butter, and hope.

11/365-3 White

"A Picture of Albinism"

White?  I have white covered.  I'm glad for the days when I don't have to think too hard about the daily prompts.

279/365-2 October Macro - Whole

"Cups and Tea"

Very rarely does something happen in my life that I can't make fit the daily prompt.  Today, however, was one of those days.

A relatively new friend, but one who has become dear to us very quickly, made us these tea cups to go with two others and a matching pot that we won last summer as part of the NOAH conference silent auction.  They are "so us" and serve as a tangible reminder of the blessings that true friendship brings.  

I needed to take a photo of the cups, but I also wanted to attempt the macro shot that is today's prompt.  This photo is a compromise. And as is often the case where compromise is involved, it does neither goal justice.

Despite what my family says, that is loose tea, nothing more.  Neither my husband or my daughter wanted to explain to me how they knew that my tea looked like a mood altering substance that is perhaps a little stronger than caffeine.  I'll just have to take their word for it.

You know that you are addicted to photography when your first instinct regarding a "thank you" note is to take a picture.  Here is the photo that I posted on Facebook earlier to say thank-you to Richard for sharing his talents and his heart with us.  We are blessed to call him and his wife friends.

274/365-2 PWA's

"PWA's"

In the albinism community there are those who find it offensive to be called an albino, preferring the more politically correct term "person with albinism" or PWA.  So here I bring you politically correct PWA's - Pumpkins With Albinism.

195/365-2 An Old Bridge

"Not Leaving On A Jet Plane"

I am a firm believer in bloom where you are planted, even if that means that you are expected to grow and bloom in conditions that are less than ideal.  This philosophy made our travels home from San Diego quite pleasurable when others might have been seriously frustrated and angry.

We left San Diego Monday afternoon on a 4:15 flight to Dallas with a connection in Phoenix.  The first leg of our journey, San Diego to Phoenix, was flawless.  We were scheduled to leave Phoenix on a 6:30 flight, apparently a popular flight time since the seats were oversold.  The gate agent asked for volunteers to rebook on the later flight to Dallas, one that departed at 9:40.  The airlines offered vouchers for future travel as an incentive.  Since we had nothing pressing on our schedule for the following day, the fact that we would be arriving in Dallas in the middle of the night was no big deal.  Once our original flight had departed, the agents started to print our new boarding passes only to discover that the flight we thought we were going to be on, the last flight out of Phoenix to Dallas that night, had been canceled.

The USAir staff was super apologetic and friendly.  They said that they would get us a hotel room in Phoenix for the night and we could fly out first thing in the morning to Dallas.  The only catch was that we would have to connect through Tucson.  At that point, the wheels in the brain started spinning.

At the NOAH conference, we met some lovely new friends who happened to live in Tucson.  Though we had just seen them a few days earlier, it would be kind of cool to see them again.  As Weber made a phone call to them and I talked to the USAir representative, it turned out that there was one more flight to Tucson that night.  And the next day, there were seats on a flight later in the afternoon to Dallas.  When all was said and done, we were able to fly to Tucson and spend the night.  The next morning our friends met us at the hotel and we had a lovely together.  They then dropped us at the airport for our flight home.  For us, this whole chain of events turned out to be a wonderful blessing.

Back to our new friends...there are some people that instinctively you are drawn to before you really understand why.  Then, as you begin to talk with each other, that energy that initially drew you together begins to make a whole lot more sense.  

Richard and Mary are older than we are; they are retired. We're not bitter though; really, we're not!  Like us, their careers were in the fields of education and public service.  We share the same anniversary, which we all celebrated while in San Diego.  Their 43 years trumps our four for sure.  Their hotel room in San Diego was directly above ours.  Richard and I, the two with albinism, share similar views on how albinism has and how it has not impacted our lives.  Over brunch, we shared countless stories of our lives and came to know more about one another. We discovered a shared understanding of the power of the labyrinth as a spiritual tool.  I'm sure, given more opportunities to converse,  other  common interests, experiences, and shared intellectual ideals will emerge.

Thank you Richard and Mary for your friendship and hospitality during our unscheduled visit to Tucson!  We hope to see you both again soon.

196/365-2 Red

"Unpacking NOAH"

This photo is more appropriate to this blog post than it is to the photo prompt "red," but it will have to do double duty here if I am to have any chance of catching up with posts and photos!

Traveling to the NOAH  (National Organization for Albinism and Hypo-pigmentation) conference was an awesome adventure all the way around.  We spent lots of time enjoying food, fun, information and time with friends both old and new.  Many of us have said that these conferences are like a great big family reunion; I truly felt that as we walked into the conference center and I was greeted by my best friend from the previous conference in St. Louis, whom I have not seen in two years.  

Here are some of my observations, revelations, and simple musing from my week with NOAH.

 1. The NOAH family comes to know you by who you are on the inside, not the outside.  Most of us can’t see well enough to judge by external appearances.  The upshot of that is that there is no need for any of you to worry about those extraneous chin and nose hairs.  To those of us with albinism, they don’t exist.  That said, if you notice them on us, a friendly pluck is OK.

2.  If you want to know how to navigate mass transit, ask a PWA; we are experts!

3. Sunscreen is the preferred drug of choice.  The good news is that sharing lotions and sprays is much safer than sharing other drug paraphernalia.

4. The Red Hat Society has nothing on the hats at a NOAH conference.

5. The Swedish Bikini Team is not a fictitious group, but rather an up and coming professional sports organization.  Swim On!

6. No matter how blind, or blonde, we are, we can always find “The Spot” at night.

7. There can be as many birthdays as there are pieces of cheesecake.

8. Hotel security guards do not provide condoms.  (The drunk girls inquiring were not part of NOAH.)  This was an exchange that you only had to hear, not see.

9. A NOAH conference is the only gathering where a Pigmento can loose his or her significant other and experience that same feeling of panic that PWAs feel when in a large crowd of people.  This is just another service offered by NOAH so that those with pigment don't feel left out of the learning.

10. Pale is in; red is not.

11.  NOAH friends are forever!

193/365-2 Centered

"Sacred Center"

I have walked by this plant, whose name I do not know, several time a day for nearly a week.  To me, there is something beautifully fascinating about the sacred spiral that is the blueprint that creates the layers of petals.   I have also come to realize that I have a love of natural monochromatic images.  I love the gradient green tones in this.  The spiral in combination with the greens, to me, make this image cry out with a sense of abundant life.

Tonight is our last night in San Diego.  The memories made and shared here with friends both old and new surpass words.  I will try, however, when I get home to share the fabulous experience that I have had this past week here in San Diego.

I am still trying to play catch-up with my daily photos and blog posts.  This is actually Saturday July 12th's photo.  

191/365-2 On A Windowsill

"Have A Coke"

This was taken a few days ago.  I love this bottle of Coke with my name on it.  It was given to me by one of my friends at the NOAH conference.  It is so hard to find things with Kris spelled with a "K" rather than "Ch".  I wonder what prompted Coke to do this.

Weber and I celebrated our fourth anniversary today.  We had a fun day but unfortunately it was a day that resulted in no photos of the two of us.  I'l have to work on that this weekend.

186/365-2 July Selfie - A Favorite

"Linen Love"

I am not very good about naming "favorites" of anything.  Not food, or books, or movies, or restaurants...nothing.  It all depends on the day.  Today's photo is supposed to reflect something that is a favorite piece of clothing, or jewelry, or shoes...something that is worn, I guess.

I do have some favorite jewelry, by it is bracelets and rings and right now my arms and hands look awful because of having had some pre-skin cancer spots removed so those were a definite no-go.  I decided that during this time of year, my "favorite" is linen.  Because much of the time I have to wear long sleeves and pants despite the summer temperatures, I am a big fan of linen clothing.  It is cool and comfortable.  And, much of the time, styles that are made from linen are oversized, another big plus in my book!  This goes back to my serious claustrophobia; it is not only sunglasses and hats that make me feel closed in, but also clothing that fits even the least bit closely.  I may have been the one teenaged girl who got in trouble with her mother for wearing "sloppy" (translation: not form fitting) clothing rather than things that were too tight.  The only thing about my "style" that has changed in nearly fifty years is that my mother is not around anymore to yell at me for the way I dress.

Because we have plans this evening, this photo was taken outside with terrible light conditions.  Sometimes you just have to take what you can get.

158/365-2 Holding - June Self Portrait

"Drawing Mandalas"

So I have finally gotten used to, if not comfortable with, taking self portraits and then the focus changes to my hands, the part I hate most about myself.  My hands looks twice as old as the rest of me due to not enough sunscreen when I was younger.  Though I do many things with my hands that were worthy of photographing - knitting, playing the piano or clarinet, writing, typing, cooking - I had a hard time getting behind this prompt today.  

I finally settled...

123/365-2 A Vision Of My Eyes

"My Eyes"

My eyes...so much can be said about them.  For many, the eyes I have have are their greatest fear; these eyes are legally blind.  There are many things that they prevent me from doing, and many other things that are just more challenging for me because of my eyes.  It would be easy to get stuck on all of the negatives associated with my eyes and their vision, but what would be the point in that?

These are the eyes with which I have been blessed.  They reveal my world to me.  I suspect that my world may look a little different than yours does to you.  I'm OK with that.  I have seen many wonderful things with these eyes.  For each of these experiences, I am grateful.

With my eyes, my camera, and a strong inner vision, I am able to see much beauty in this world.  There are many people with perfect eyes that sadly cannot say that.

121/365-2 Healthy Vision

"Seeing The Bright Side"

May is eye health month and being that healthy vision is important to photographers, many of the Capture Your 365 prompts this month relate to vision, eyes and seeing.  This could be a challenge to the blind kid here:-)

Actually, I like the prompts that challenge me to look carefully and intentionally at my inner world as well as my outer world.  For me, photography definitely has some challenges because of my vision, but working to overcome them is well worth the patience and energy.  Some days I know that my accomplishments are simply the result of hard work, patience and perseverance.  Others days, I have no doubt that it is through divine intervention that the images were created.  I'm OK with both.

I may never be good at photography, but that matters less and less to me.  I enjoy it.  It feeds my soul.   Photography is my spiritual discipline of choice right now.  Through it I am getting to know myself better and am strengthening my relationship with God and God's creation.

67/365-2 Drive

"Driver's Seat"

For most this photo represents the everyday, probably even something that is taken for granted. For me, however, because of my vision, sitting in the driver's seat is something I have never done.  When I went outside to take today's photo I had planned to shoot from my place in the proverbial passenger's seat; but my plans changed.  When I got out to the car, thanks to spending the entire day with the CY365 Birthday Bash, I opted for a new perspective and thus slid into the driver's seat instead  When I looked at the image on the computer, the most poignant detail to me is the speedometer on "0".

4/365 - 2 A Little Bit - January Self Portrait

"Here I Am"

I think that at one time or another we all struggle with our self image.  This is a place where our own reality often differs from the reality seen by those around us, those who see us as a whole person  rather than as a series of disconnected imperfections.

As a person with albinism, as one who looks different from most of society, this struggle has been extremely difficult at times.   In fact, it has taken me fifty years to get to the point where I can say that I honestly don't worry too much about this particular aspect of myself anymore.  I am who I am and that is good enough.  This is due to the amazing NOAH community.  I only wish that I discovered this awesome group of people earlier in life.

I also have lupus.  Fortunately, for the most part I have had no serious manifestations of the disease.  My body and I have an agreement with one another:  I'll do my best to take care of it - feed it what it needs to be well nourished and let it rest when it needs to rest if it will cooperate and not keep me from doing the things that I want and need to do.  So far this arrangement has worked.

Two and half years ago it was discovered that I have a benign nodule on my thyroid.  It is just there, not affecting anything one way or the other.  The only time I pay any attention to it is when I go for my yearly sonogram to check on it, which I did last week.  Though the rest of me has grown a little over the past year, the nodule has actually gotten smaller.  I don't know why or how, but that is a good thing.

So, as an attempt to be thankful for the body that carries my soul and spirit around, I have pushed myself out of my comfort zone for this first :official" self portrait of 2014.  I want to celebrate who and what I am - all of it.  This photo has pushed me creatively and emotionally.  Living beyond the confines of "the box", no matter how big or small our personal boxes may be, is what allows each of us to grow into a whole and happy human and spiritual being.  I'm doing my best to become that being.