Category: Family

International Albinism Awareness Day

I wrote this article and it originally ran in the Concord Monitor Friday June 13, 2015. It is reprinted here with permission.

My daughter is reviewing brochures for educational travel programs. “Sooooo I’m guessing Tanzania is out.” I look up at her and give her the “look”. She’s sitting across the room from me so I know she doesn’t see my face. Not because she’s not looking, but because like me, she has a hard time seeing details like facial expressions at distance. “Sure honey, you can go to Tanzania if you have a death wish or can spare a few body parts.” I wish I were joking.

The four of us sharing a laugh in Hawaii. My husband and I and our two children are albinos. We all have the genetic condition albinism.

Like their father and me, my children have albinism. Since the records started being kept in 2000, more than 147 people with albinism have been murdered primarily in countries in eastern Africa; and there have been another 229 acts of violence including mutilations, grave desecrations and kidnappings. These figures are as of June 3, 2015 and are compiled by Under the Same Sun, a Canadian charity focused on ending the atrocities and bringing basic human rights to all people with albinism. In Tanzania and other East African countries, people with albinism are hunted and their limbs hacked off and sold to witch doctors for inclusion in potions that are said to have magical powers and will promote prosperity and wellness. So no, my daughter will not be going to Tanzania, or anywhere in East Africa for that matter.

Albinism is a genetic condition. It causes a lack of pigment in the skin, hair and eyes. Most people are more familiar with the term albino but some in the albinism community find that label offensive. Albinism affects all races. In the Western world, albinism typically affects 1 in 20,000 people. In Africa that number is anywhere from 1 in 2,000 to 1 in 400. People with albinism are born with decreased pigment in their skin, hair and eyes (oculocutaneous albinism OCA) or just the eyes (ocular albinism OA). People with albinism, or PWA’s as we commonly refer to ourselves, have light colored hair and are fair skinned, and we also have varying levels of decreased visual acuity. A large majority of PWA’s are considered legally blind, which means that their best corrected vision is 20/200. That doesn’t mean we’re totally blind, but small print and things at a distance are hard to see. We have nystagmus which is an uncontrolled motion of the eyes. Even though our eyes shake, we don’t see the world as always in motion, but it does mean our brains have to work harder to provide a stable image. PWA’s are sensitive to the sun and bright light (photophobia), so it’s not unusual to find me wearing sunglasses even on an overcast day. We also burn easily. In the U.S. we are fortunate to have easy access to sunglasses, sunblock and sun protective clothing. Also, people with albinism likely have jobs that are indoors.

A Tanzanian woman who lost her right arm to attackers that wanted to sell it to witch doctors.
Image courtesy of Under the Same Sun

In Africa, things like sunglasses, hats and sunscreen are virtually impossible to come by. According to Asante Mariamu, a U.S.-based non-profit committed to providing education and support PWAs in East Africa, most people with albinism die from skin cancer before the age of 30. Less than 2% of PWAs in Africa make it to their 40th birthday.

A lack of understanding of the genetics of albinism and prevalence of myths means PWAs in Africa are shunned and often live in fear for their lives. For example, it is believed that having unprotected sex with a woman with albinism will cure AIDS (it won’t). Another common belief is that touching a person with albinism can bring illness, bad luck or even death, because albinism is a curse brought by the gods or the dead.

A Tanzanian Toddler already showing signs of severe skin damage from the sun
Image Courtesy of Asante Mariamu

People with albinism face discrimination and bullying in the U.S., but on a completely different level. There are social stigmas and challenges to becoming gainfully employed. When I was in school, I was teased and called Casper the Ghost or White Cap. There was the high school physics teacher who used to like to yank open the shades so that the sun would shine right in my eyes. Then there was the prospective employer who upon discovering I might need accommodations (a larger computer monitor), altered the job description so I was ineligible. When I was alone, I felt very alone in my struggles.

I finally met another person with albinism when I was in the 8th grade and researching albinism for a health report. Jan Knuth was a social worker in Philadelphia. When I watched Jan, I was able to step outside of myself and see myself as others did. She squinted in the light and when she read things, it she brought them right up to her nose. I did those things too, but never gave much thought as to how those behaviors might look to others. In so many ways, that meeting changed my life forever. As a direct result of our meeting, Jan and I and six others, including my mom and my step-dad, founded NOAH, the National Organization for Albinism and Hypopigmentation (www.albinism.org), a non-profit that provides information and support for people with albinism and their families.  33 years later, NOAH is thriving and considered one of the leading resources for people with albinism.

Through my work with NOAH, I’ve met many other people like me and formed lasting relationships, including one with a special man. Pat Laughlin was an early member of NOAH’s board of directors. Sometimes she’d bring her son Tim to board meetings and we’d hang out and were just friends. In 1994 the NOAH national conference returned to Philadelphia and attracted more than 400 attendees. At that event, Tim and I saw each other for the first time in a few years and the rest, as they say, is history. We were married two years later.

We talked early on about wanting children and the likelihood that they would have albinism. It was thought that Tim and I had the same type of albinism. which means that, we only had defective genes to pass on so there was a 100% chance our children would be affected. We proved the theory in 2000 with the birth of our daughter and again in 2004 with our son. We were very fortunate to have very supportive families. We were raised to live to the best of our abilities and not to use albinism as a crutch. We were encouraged to ask for help when we needed it, but to seek and find our own limits.  We were college educated and self-supporting. We figured we’d be in a good place to support kids with albinism. We already had shades on the windows, an ever-growing collection of hats and gobs of life experience.

Because of the support I’ve had, I view albinism as an inconvenience. Not everyone is that lucky. Some parents can’t handle a child with differences. The children are raised to believe that they are victims of their albinism and I personally find this hard to stomach, especially in light of the conditions that PWAs in Tanzania are born into.  Albinism is a challenge, but to me, in the bigger picture, it is an aggravation.

The first reports of people with albinism being attacked in Tanzania came in 2008. On June 13, 2013, the United Nations adopted its first ever resolution expressing concern at the attacks and the “widespread discrimination, stigma and social exclusion suffered by persons with albinism.”

In 2014, surrounded by representatives from albinism support organizations around the world, the United Nations declared June 13th International Albinism Awareness Day. The day is set aside to raise awareness of albinism and encourage increased human rights for people with albinism the world over.

Lee Laughlin with her children Timmy 11 and Trisha 15

2015 is the first International Albinism Awareness Day and groups around the world have scheduled events and educational opportunities. Today, I tip my hat and raise a bottle of sun screen to honor my fellow albinism advocates who have worked so hard to shed light on the atrocities and bring equality and basic human rights to people around the world.

For more information about please visit these websites:

International Albinism Day www.albinismday.com

The National Organization for Albinism and Hypopigmentation (NOAH) www.albinism.org

Under the Same Sun (UTSS) www.underthesamesun.com

Asante Marimu www.asante-mariamu.org

United Nations Website on Albinism albinism.ohchr.org

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He Goes to 11

Mim holding a fish he caught at cub scout campDear Mim,

Eleven. Really? Wow!

It’s been quite a year of travel for you. We went to Anaheim and San Diego last summer and saw Disneyland and had a blast at the NOAH conference.  Later in the summer and into the fall, we played tourists in our own backyard and saw Attitash, Mount Washington, and the Kancamagus Highway.  In November you went to Williamsburg with Grammy, Grandpa and Vern and had the tie of your life. In January you, Trisha and I made our second trip to Smuggler’s Notch and skied while Dad was in Vegas. MAN was it cold, but the skiing was great. The icing on the cake was our family trip to Hawaii in February. You sure get around kid!

Your tenth year has been a year of growth and maturity. With help, your focus has improved, your impulsivity has calmed and your frustration threshold is much higher. You’ve had a great year in 5th grade with Miss L. Your Exhibition project on the impact of video games was excellent. You are excited about Middle School but at the same time you aren’t really looking forward to leaving elementary school behind. Can’t say I blame you on either front.

Mim 11 - 1

In November, you earned your junior black belt in karate. You took a little break to focus on ski club and then went back to it and are doing very well. You received your Arrow of Light award in Cub Scouts and have moved up to Boy Scouts. You are enjoying your new troop and all the outdoor activities they participate in. In April you rode 23 miles on your bike and you had a blast at the spring camporee. Minecraft is still your thing, and when I kick you off the iMac, you go upstairs to play Clash of Clans with your classmates. Your imaginative play offline is in depth and detailed. You also still really like to read.

Mim 11-2

Lately, you’ve been sleeping a little later and starting a little slower. You’re still a morning person, but not quite as quick to start as you once were. I’m endlessly grateful for all the “I love you mom” ’s and the hugs.

Eleven will be a year of change, but I’m sure you’ll meet it with your trademark grin and boundless energy.

Mim 11-3

Happy Birthday!

Love, Mom

15

Dear Fish,
IMG_043815.
Wow.
FIFTEEN years.
That’s a long time!

It’s been quite a year. You are discovering so much about yourself, your strength and weaknesses and what you want out of life. It’s exhilarating and exhausting and I’m only WATCHING.

You completed 8th grade wrapping up what you described as some of the best years of your life and made the decision veer from the beaten path that the majority of your peers followed. Your choice to attend a science and technology focused charter school IMG_1110_2was a good one. The environment suits your independent mindset and your self-motivated learning style. By all accounts, you are keeping your teachers on their toes as they strive to challenge you. Your grades reflect your commitment to learning and being the best you can be. We still need to get you to ask for help sooner rather than later, but that’s a work in progress (I know pot meet kettle).

Thank you for talking to me, for sharing your fears, your concerns and you dreams. I know for sure I’ve been helpful in some cases. In others the jury is still out and I’ve definitely made mistakes, but I will continue to listen and try to answer your questions and address your concerns as best as I can, even when they make me squirm.

IMG_2619You’ve had some challenges this year, but you’ve faced them head on and are working to find your new normal in an ever-shifting landscape. You’ve also had some major successes. You managed food and sunscreen at 2 weeks of Girl Scout camp and you biked 102 miles! Here’s to another active summer! In November you were promoted to junior black belt in karate and you continue to develop your skills. As previously mentioned your grades are great, and you are getting a lot out of your regular volunteer work at the elementary school. You’ve had your bioptic for a few months and I think it has broadened your world, but I’m looking forward to seeing you use it more.

We’ve traveled in New Hampshire and afar to San Diego and Hawaii. You are truly a pleasure to travel with. You handle yourself well and you are curious about new places. I’m looking forward to new adventures!

IMG_1595You’ve entered the world of social media and while this is a tad bit unnerving for me, I truly enjoy your posts. Your passion and sense of humor come through. Your passions this year include all things Grey’s Anatomy (Team #MerDer FTW!), equality for all and music just to name a few.

I love your style, it’s all your own and it works for you. Keep on rockin’ it girl!

I can’t wait to see what fifteen has in store for you.

Happy birthday!

Love,

Mom

IMG_1466_2

10

A collection of closeups from Mim's 9th yearDear Mim,

Did you know that today you turn 10? We did. You may have reminded us a time or two over the last few days. A decade. Double digits. Wow!

This has been another year of growth and maturity for you. You are much more in control of your energy levels and you are more aware of what is going on around you. You’re almost done with Swing for the Stars (OT). We’ll miss Ms. Meghan, but she’s given you lots of tips and exercises to keep building your fine motor skills and your core strength.

In karate, you went from green belt all the way to first degree brown belt (3 promotions). You completed another year of Cub Scouts and are officially a Webelos 2. You’ve had a great year at school and every day we see behavior that shows you are able to handle more responsibility. It’s a wonderful thing.

By far, the highlight of your 9th year was the Disney Cruise we surprised you and your sister with last August. You will happily recount your adventures with anyone who is willing to listen. It was a wonderful trip. We also went to Ohio and you reconnected with cousins we don’t see that often. For you it was as if time hadn’t passed at all.

This year you spread your wings a little and tried chorus at school. Despite your extremely outgoing personality, you ultimately decided you didn’t like performing in front of people. You’ve expressed interest in possibly trying an instrument next year, but we’re still talking about that.

You’re still a bundle of energy but you are much better at managing it. You’ve discovered the outdoors is a really fun place to engage your imagination and work out the wiggles. You are still a morning person although lately you’ve been splitting your time between imaginative play and reading on the love seat with me.

This year as been full of experiences around making and keeping friends. I see in you many of the same struggles I faced. It’s hard when you feel things so strongly, but you have a good heart.

Your first decade has been full of joy and boundless energy I can’t wait to see what the future holds for you!

Happy 10th to my baby boy!

Love,
Mom

In the Wind

*Deep Inhale*

It’s spring. The air is fresh. The trees are green and after such a long cold winter, it’s time to enjoy the warmer temperatures before it’s miserably hot and I melt like The Wicked Witch.

My husband has a jeep and this time of year, it turns even mundane errands in to a fun experience. It’s a 2008 Wrangler, and right now, the doors are off and the only thing it’s sporting is a bikini top to keep the sun off the driver and the passenger.

The jeep in shadow as we drive down the road

A trip to buy chicken supplies and chewing gum (the gum is for the kids, not the chickens), turns into some grown-up time. We make a stop at Starbucks to procure beverages. The wind is blowing and the tunes are cranked. There’s no deep meaningful discussion, just much needed time spent together enjoying each other’s company.

Errands completed with a 50% success rate (we got the gum), he says “Where to?” The responsible adult should say “home.” It’s late in the day and dinner needs to be concocted.

I abdicate “You’re driving, you decide.”

He heads away from home and I know we’re headed for some mud. The next town over has trails. He knows most of them by rote from childhood hijinks. It rained quite heavily earlier in the day, so this promises to be fun.

The trails do not disappoint. I’m sure that diehard mud enthusiasts wouldn’t be impressed, but I’m happy with our little adventure. It’s like mother nature’s own roller coaster ride/water park.

We’re back on pavement and the sun is setting, so it really is time to head home. I make him stop at the ice cream stand so I can ruin my dinner with my annual soft serve cone, a vanilla and chocolate twist with chocolate jimmies.

He was in Miami last week and this week he’ll be in San Antonio. There’s karate, Cub Scouts, homework and work deadlines but for a few hours we are “in the wind” and I am at peace.

I first heard the phrase “in the wind” on the TV show Counting Cars , Danny Koker from Count’s Kustoms  frequently talks about being “in the wind”, referring to riding his motorcycles. I’ve been a passenger on a motorcycle once and I really enjoyed it. I have NO desire to own or drive a motorcycle, but I do enjoy being “in the wind”.

One Year Later

I originally wrote this at the end of March. I delayed posting it because I wanted to extend the joy of celebrating Fish’s birthday. I am eternally grateful that my mother did not die on her granddaughter’s birthday. Time passes, the pain eases, but I still want to remember.

A close up of my grandparents grave maker with my mother's information addedA week and one year ago today at 8pm. My phone rang with a call from Massachusetts General Hospital that would forever change my life.

Your mother is dying, how do you want to proceed.

It was the start of 3 of the worst weeks of my life. A year later, I’m still here to tell the tale maybe stronger for it. I miss the mother who raised me, I don’t miss worrying about the medically fragile woman who would refuse to answer her phone for days on end.

It still hits me out of the blue that she’s gone usually during the good times. Which is good, because she really was a good mother when it mattered most. She gave me a strong foundation upon which to build strong relationships that continue to nurture and support me.

She had a will, but no assets, in general that made the process of disposing of her estate relatively easy, but it wasn’t without it’s bumps. Have you had the talk? Do you have a healthcare proxy? What about a Living Will? Durable Power of Attorney? A will? If you answered no to any of these questions get thee to an attorney PROMPTLY.

Hell even one of those online websites is better than nothing. It’s not for you, you’ll be gone, having your end of life matters in order is a gift for the people who love you. Do it. Do it NOW!!

It’s unfortunate that Fish’s birthday and the anniversary of my mother’s death are only one day apart but it is better than the alternative. I would rather focus on the joy and potential that is my daughter, but I never want to forget woman who played a huge role in the mother I am today.

My mother and I and my college graduation.

Candles In the Window

'Candles' photo (c) 2010, Lori L. Stalteri - license: http://creativecommons.org/licenses/by/2.0/ Last month, we awaited the arrival of a late day snow storm, and my mind wandered back to the early 80’s in Pennsylvania. I was in 8th grade. I had science last period so we were in Mr Bauer’s room. I had my coat on, but not zipped. It was important to be ready to bolt as soon as my bus was called, but one had to balance that with comfort while waiting for what seemed to always be an interminable amount of time. The room hummed with adolescent energy. We were ready to be done with school long before they were ready to release us.

Unlike recent years, at that time, the mid-Atlantic states weren’t know for heavy snow fall. Precipitation in December was typically freezing rain or sleet. A white Christmas was a rarity. This day was no different. I can’t tell you whether what was falling was sleet or freezing rain, but it wasn’t accumulating, so we didn’t pay it much attention. Just. Let. Us. Go. Already! Five minutes past dismissal, no buses. Ten minutes, fifteen minutes and finally at twenty minutes past dismissal there was an announcement. The roads were awful and the buses were delayed.

Mr. Bauer told us to take our coats off and encouraged us to start on our homework. Yeah, right. We chatted, we read. Eventually some of us caved and begrudgingly pulled out our homework. An hour and a half past our normal dismissal time, the busses started to trickle in. Half an hour after that, my bus showed up. As I skated down the walkway to the bus, I looked out to the road in front of my school and saw nothing but taillights. Uh Oh.

It was 12 minutes from school to my house without traffic. With traffic, it typically took us closer to 20 minutes to make the trip. That day it would take almost two hours. By the time I stepped off the bus it was almost 7pm. I was toast, exhausted, fried, frustrated and hungry.

As I walked to the house, I almost burst into tears. In my absence, my mom had pulled out the Christmas candles and put them in windows. I had always lobbied, for brighter, more colorful decorations, but that day, I came to appreciate the simplicity of an electric candle with a white bulb on the windowsill.

I was home.

She met me at the door with a hug and helped me out of my stuff. She sent me to the living room where she’d lit a fire in the fireplace, a rare weekend treat that was unheard of on a week night. She brought me a mug of hot chocolate and left me alone by the fire to enjoy Andy Williams album Merry Christmas while she finished dinner. I was in heaven.

I haven’t spent Christmas with my mom in more than twenty years (not for lack of trying), but this year, as I made my way through the season, I am noticed her absence more than other years. I’ve carried on the tradition of candles in the windows and I smiled every time my house came into view. I still listen to Andy Williams Merry Christmas, albeit in digital form. I couldn’t change her and I can’t change the past, but I tried to focus on the good memories and let the bad ones melt away like the sleet and freezing rain. Some days I’m even succeeded.