NOAH celebrated it’s 25th anniversary last weekend in Philadelphia.  Hats off to Mike, Lori, and the local planning committee.  It was wonderful celebration of where NOAH has been and a glimpse of where NOAH could go.

Here are my comments from that night.

“25 years of NOAH, wow, that kind of blows my mind.

I don’t remember that trip to the doctor at 6 weeks when I was diagnosed with albinism. Now as I parent, I can’t imagine what it must have been like to hear “don’t expect a lot of her, she probably won’t graduate from high school”. Thank God my mother didn’t listen. She battled long and hard with our school district for “reasonable accommodation” while at the same time refusing to let me use albinism as a crutch. Although it did come in handy for school projects.

I have to blame my 8th grade health teacher Mrs. Dougherty for my participation in NOAH. While conducting research for a term paper, I met this “older” woman with albinism named Jan Knuth. Yeah, I’m probably as old now as she was then.  Sorry Jan, age has very different meaning when you’re 14.

I did get an A on the paper by the way.

So Jan had this idea to do a conference for people with albinism.  Cool! You mean I could meet other people that look like me? Oh I am all over this. I have no doubt that Jan would have done this without me, I’m just glad I got to come along for the ride.

At dinner the night before, when Dr. Carl Witkop outlined the necessity for a support group and shared the name NOAH, I was exuberant, but I had ulterior motives. I’d already met Jeanne Leek, a talented artist with albinism who was, by my estimation was the coolest, but I wanted to meet MORE people like me.

In 25 years, I’ve met lots of people with albinism.  Some very much like me, some very different, but I am better for having met each one.

So if you’ll indulge me for just a few minutes, I’d like to share some memories.

I remember the first time I saw another person with albinism read.  I finally understood why they made fun of me.

I remember the first time I ever saw nystagmus in another person with albinism. No wonder I was the staring contest champion.

I remember many trips down I-95 with my mom and Dennis for endless discussions at board meetings about by-laws or what color the brochures should be.

I remember the teen rap session in Minnesota that just wouldn’t end. And, at that same conference, scaring the bejeezus out of my mother because she was unable to pick me out of the crowded swimming pool.  For once, I blended in!

I remember thinking I was “all that” when I traveled from Boston to the Hartford Connecticut conference by bus, all by myself.

I remember hanging out on the helicopter pad in Chicago in 1992 and really feeling an incredible sense of belonging.

I remember my friend Jennie George telling me about this guy Mike McGowan.  He had albinism and she was on a crusade to get him to come to the Adult Day in Chicago. He was a little hesitant at the time.

I remember seeing my old friend Tim Laughlin at the 1994 conference and knowing then he was the man of my dreams who just happened to have albinism. He hates compliments and the limelight, so I won’t dwell, but I will say 13 years and 2 snowballs later, I’m one lucky woman!

I remember the thank you post on the NOAH webboards from Haroon’s father. Haroon was 6 days old in the spring of 1996 and the California hospital didn’t know what to tell his family about albinism. Dad found NOAH’s web site and got the information and reassurance he needed.

I saw Haroon, and his Dad at the conference in Minnesota last year. They are thriving.

Then there was that photographer from New York who wanted to take photos of people with albinism.  Yeah right buddy, over my dead body. Who knew that 3 years later, I’d be travel traveling through Australia with that same photographer. Who knew what an incredible impact his work would have on the albinism community?

I remember Jeaninne Stearns suggesting NOAH hire someone to handle some of the administrative tasks.  Whhhaaaaa? Not do it all ourselves??? The board voted to give Lori Aubrey & precise processors a “trial run”.

I remember thinking I’d have the youngest child at the Boston conference and getting beat out at the last minute by a family from Maine with a 6 week old.  Cool! They were getting the right information from the start.

I remember thinking that I’d have the youngest child for sure at the Atlanta conference.  Timmy was 6 weeks old and we were both in a post partum haze, but we were beat again by a little girl born the day after him!

I also remember the Atlanta conference because my then 4 year old daughter Trisha met a 6 year old girl with albinism. As we walked away Trisha excitedly said ”Mommy she has alvinism, just like me“ never mind the chipmunk reference, it was all I could do not to lose it right then and there. Isn’t that what I’d wanted for myself all those years ago?  To find friends who looked like me?

I’ve given a lot of my time and energy to NOAH, but gotten ten times more in return.  25 years ago when we sat at that table eating dinner, I really had no idea what I was getting into.  All these years later, I’m just grateful to everyone who has worked so tirelessly to grow and support NOAH.

So, with all due respect to MasterCard, I’ll leave you with this:

Trips to board meetings and conferences at least $5,000.
Hours spent as a volunteer, writing articles and html and planning conferences, too numerous to count
Meeting some of my closest friends, pigmented or not, Knowing that parents now have immediate access to accurate information about albinism and, most importantly that my kids won’t grow up feeling isolated by their genetics

Priceless.”

I’m a sap and I know it.  There were more than a few times that my eyes got watery both as I wrote and read my presentation.   My contributions to NOAH are among some of my proudest accomplishments.

NOAH presented each of the founders with a beautiful clock commemorating the occasion and thanking us for our dedication. The clock is truly lovely, but I got all the thanks I could ever want when Kelsey Thompson stood up at the end of the formal presentations and said “I’m 27 years old and I don’t remember a time without NOAH”.  I got goose bumps when I heard her speak those words. 

Long live NOAH and heres to everyone with albinism getting connected to NOAH and the albinism community.

This month, I have had my driver’s license for ten years. It’s kind of hard to believe especially, since I never expected to drive.

Growing up, I was told repeatedly that I would not be able to drive.  I was also told that I couldn’t get contacts or ski.  I would later disprove both of those statements, but even I believed I wouldn’t drive.

When I was 26, Dr. Paulette Turco, my low vision specialist, casually mentioned that I had enough vision with my new contacts to qualify for a learner’s permit in Massachusetts.  I promptly burst into tears.
Me? Drive? Nooooooooo.  I wallowed in self doubt for a year and finally decided that I had to determine for myself whether I could drive, or not.

I took professional driving lessons with Mark Whitehouse of the Adaptive Driving Program, Inc. in Dedham Mass.  I also spent a lot of time driving with my friend Jeanne Spellman. Mark taught me what I needed to know to pass the driver’s test, Jeanne taught me “the rules of the road” for survival on the roads of Massachusetts.  Both groups of knowledge were and are incredibly useful.  While both Mark and Jeanne played a part in getting my license, it was Jeanne’s unwavering patience and faith that really got me through the whole process.  Over and over again she would say “You can do this.” and she was right.

Getting my license lead to opportunities  I wouldn’t have had otherwise.  Including the ability to drive to Rhode Island to support Jeanne when personal circumstances required she live there for a few months.

After five years of driving in Massachusetts, we moved to New Hampshire.  The laws and the roads here are different.  We live in the country, and the only way to get around is by car, but in New Hampshire, my vision requires that I wear a bioptic telescope, now I don’t know how I got along without it.

Ten years and 3 cars (the first two were leased) later, I can say I am a good driver.  Though I am not accident free, all but one of my accidents happened within the first 2 years of getting my license and by all accounts can be attributed to driver inexperience, not vision. I can say that no one has ever been injured in any of the accidents I had, but there is a newspaper box in Waltham, MA that will never quite be the same.

The most recent accident happened four years ago at 25 mph on an icy road in a car that I had yet to drive in winter conditions. There was relatively minor damage to the front end of the car and my daughter has a story she likes to tell again and again and again and (you get the point).

Mark Whitehouse once told me it takes 6 years to become a competent driver.  I scoffed then, but in hindsight, I see his point and I agree with him.  It takes that long just to encounter all the different types of road conditions and wacko drivers. So, it ten years of driving, what have I learned?

When it comes to choosing a car, go with function over form.  Yeah, that sports car LOOKS cool, but the visibility can be atrocious and I need all the visibility I can get. I’ve had 2 Dodge minivans and now have a 2003 Honda CRV. Lots of windows to scrape in the snow, but worth it.

Some times the long way is the best way.  Especially if it means avoiding road construction or head-on sun early in the morning or late in the day.

Knowing my limits can be disappointing, but it keeps everybody safe.  I’ve missed an activity or event here or there because the weather was unpredictable, or I was just too tired, but I’m still here in one piece.

Don’t drink and drive.  While this should be a no brainer for everyone, it is especially true for me.  I am a lightweight when it comes to alcohol, so If I’m drinking, I’m not driving, no way, no how.  Besides, I owe more than a few turns as designated driver.

When renting a car, it is worth the extra money to rent one similar to what I regularly drive. It is also worth it to spend a few extra minutes memorizing where the critical controls are (i.e. speedometer, wipers, lights and turn signals).

There should be a federal law that says anyone directing traffic is REQUIRED to where brightly colored gloves.   Most don’t so when in doubt, I wait for very clear directions.

There are lots of high tech tools for driving, some are distractions, some can be a Godsend (I’ll write more about my favorites in another post).

I’ve met people who say “my vision is XX over 200, can I drive?”.  That depends on where you live, and you. Driving is not for everyone. Even normally sighted people forget that driving is a privilege, not a right, but I encourage you to do the research, talk to you doctor, talk to the Department of Motor Vehicles and if you have the vision and the laws allow, give it a try.  You will meet resistance, but persevere. You may decide that it requires more vision than you have and that’s OK, but at least you will know that you gave it your best shot. On the other hand, you may decide that yes, you can do this.  Good luck!

 

With my annual eye exam approaching, I knew it was time to consider a new prescription. Reading was getting progressively more difficult and less comfortable, even with 2x flip-down magnifiers over reading glasses, with an occluder clipped on to the clip-on, covering my right eye. (My bad eye, which also insists on pointing in the wrong direction, normally closes automatically to let my good eye focus. This causes muscle aches around the right eye.)

We determined that we could leave the bifocals alone, but could do better with the reading glasses. After careful examination, and with consideration for my non-existent glasses budget, Dr. Taylor advised that changing the left lens on my reading glasses would do the job.

Armed with a prescription for one new lens, I headed to our family’s favorite optical shop. After calling around to find the right high-index lens blank, they created a new lens and put it into my old glasses. Indeed, this did make reading easier, and eliminated the need for the magnifier, as Dr. Taylor had predicted. Of course, I lost the occluder in the bargain, as the glasses lens is too thick to hang the occluder on directly and the clip-on magnifier is no longer necessary. Since reading is now easier, however, the occluder is at least less crucial.

But alas, that isn’t the end of the story. For as long as I can remember, I have used my reading glasses to work at my computer. Now, glad to have my reading glasses back, I sat down to go to work. Since my old reading lens used to work at both focusing distances (holding a print document closely and sitting before a monitor), I assumed the new lens would do the same. I was wrong.

I immediately discovered that I simply cannot use the new lens to see the monitor. I was thus forced to resort to using bifocals for computer work—an untenable solution, at least for the long-term.

Enter, Plan B. Dr. Taylor suggested that I could put the old lens, which still works for monitor reading, into a new frame. Of course, I also had to get a new right lens to finish filling the frame. Thus, I ended up with the equivalent of a new pair of glasses, but spread over two units.

I am now the proud owner of three pair of glasses: one for walking around (old bifocals), one for reading (new left lens—the thickest I’ve ever seen—in old glasses), and one for computer work (old left lens and new right lens in new frame). Add to that clip-on magnifiers, a now unusable occluder, a CCTV, and ZoomText on my computer, with a 19 in. monitor.

How did reading become so complicated?

So, who am I and why should you read my posts on this blog?

The short answers:
I’m still figuring that out.
I’m not sure.

The long winded answers:
In all seriousness, ok, semi-seriousness, I am an albino. I embrace that term, but that is for another blog entry so let’s start over. 

I am a woman with albinism.  I’m married and in my late 30’s (eee gads how did THAT happen?). I have a great husband, two kids (all of whom have albinism), and all in all I have a pretty good life.

I work for myself as an event manager, planning educational seminars and conferences.

I’ve been around NOAH since the very beginning.  I’ve served on several committees and held a variety of leadership positions within the organization until last year, when I stepped down as National Conference Chair so that I could try and regain some sanity in my life.  I’m happy to say I’ve been mildly successful in that area.

I am a passionate person and sometimes that rubs people the wrong way.  Over the years I’ve worked to tame the “It’s my way or the highway” attitude, but it does occasionally still rear its ugly head.

One thing I am not is a victim.  I don’t suffer “Oh Poor Me” types well.  I believe life ain’t always fair and you have to play the hand you are dealt.  I also believe what goes around comes around. Oh and just to throw in one last cliché, when life gives you lemons, it is time to make lemonade.

That’s not to say I don’t have my bad days. I do and I can complain and whine with the best of ‘em, but at the end of the day, I am the one who controls my destiny.  I can’t change how I was made and I can’t change what others do, but I can control how I react to different situations and individuals and I get lots of opportunity to practice!

Having albinism isn’t always a picnic, but it is a big part of who I am and it has provided me with some incredible opportunities (e.g, appearing on several TV talk shows and traveling to Australia with an exuberant photographer, not to mention meeting a fantastic man and marrying into a wonderful family that I’m not sure I would have had otherwise.

Ok enough about me.   Why should you read this blog? One of my passions is learning.  I love to learn new things.  I love talking with people and hearing what they’ve done and what has and has not worked for them.  I also like to share what I’ve learned so that others might benefit from my experiences. So, I’ll share my stories and you share yours and hopefully we’ll all learn a thing or two.

I know that not everyone has had the experience living with albinism that I have.  I am fortunate that, throughout my life, I have had tremendous support and encouragement from those close to me and strangers alike. I know this is not true of everyone.  I’ve never walked a mile in your shoes and you haven’t walked in mine. Your experiences may be different than mine and that is not right or wrong, it is just the way things are.  My only request is that we all make an effort to dialogue respectfully.

One last disclaimer and I’ll wrap it up for now.  I’m sure it says this somewhere on this page, but I want to reiterate.  The  views and opinions stated in my rambings - er, writings, are my own and do not necessarily represent that of NOAH,  the albinism community, or even my dog, my thoughts are mine and mine alone.

So, buckle your seat belts and let’s take this thing for a spin, shall we?