Aging, Albinism, and Audible.com

Aging, Albinism, and Audible.com

“Any way you want it
That’s the way you need it
Any way you want it
She said any way you want it
That’s the way you need it
Any way you want it”

–Journey

Albinism certainly isn’t the worst health problem to have.  In fact, I feel a little silly making it a topic for a blog post.  However, I have recently discovered Audible.com which has prompted me to reflect on how much of an impact albinism has had on my life.

The family lore is that when I was born, I came out squinting.  The doctors advised my mother to enroll me in a school for the blind.  Mom refused and said, “She’s not blind.  She’s just sensitive to the sun.”  In 1954, I don’t know if doctors knew enough about albinism to give me an official diagnosis at birth.  Regardless of what was discussed, the word “albino” was never uttered in my presence while I was growing up, not once.

Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. There are several different types of albinism, involving different levels of pigment deficiency.  In my case, I have no melanin pigment in my skin at all and I am unable to tan – something that bothered me greatly when I was a teenager.  My hair is naturally blond, not white, as is often stereotypically associated with albinism.    My eyebrows and eyelashes are white, which I hide with make-up.  My eyes are blue, not pink, although my ophthalmologist told me that my eyes have very little pigment behind the surface of the iris.  I have several vision impairments that are common in people with albinism:

  • Rapid, involuntary back-and-forth movement of the eyes (nystagmus). This condition prevented me from being a candidate for laser eye surgery.
  • The inability of both eyes to stay directed at the same point or to move in unison (strabismus, often called “lazy eye”). Many people have commented to me on this condition, which worsens when I experience eye strain.
  • Extreme nearsightedness, which is why I wear glasses.
  • Sensitivity to light (photophobia). I wear sunglasses whenever I go outside during daylight, regardless of the amount of sunshine.
  • Headaches. The visual impairments above often combine to cause chronic headaches.  I’ve had both migraines and tension headaches throughout my life.  Since I retired several years ago, my headaches have increased in frequency as I spend more time reading and using the computer.  This problem, combined with normal age-related declines in vision has prompted me to look at ways that I can continue to enjoy reading without triggering a headache.

Enter Audible.com.  I tried large print books but they go only so far in resolving my vision impairment and headaches.  Books on CD continue to be a good solution but my library’s selection is limited and they are expensive to purchase.  It is clear to me that “listening is the new reading” – a tagline for Audible.com and one that I believe will help me to prevent albinism-related headaches.

This week, my daughter sent me a set of wireless headphones.  Jim installed it on my laptop and I figured out how to “pair” the headphones with my Android phone.  I celebrated by listening to Journey on my new headphones at high volume while I loaded the dishwasher and Jim slept undisturbed in the next room!  Then, I joined Audible.com and downloaded the app on my phone.   My membership entitled me to my first two books free so I downloaded two selections and settled on the couch to listen.

Wow!  No eye strain and I can continue to enjoy the many, many books I want to “read.” While Audible.com was originally developed for busy executives on the go (reading while commuting, etc.), this is a wonderful technology for those of us who are experiencing vision decline from aging or impairment.

I have only recently begun to grapple with all the ways in which albinism has affected my life.  I don’t know if my parents were uninformed or in denial, but it doesn’t matter now.  I have started to research more about the condition and I now keep a Pinterest page, which I’ve titled, “Albinism is beautiful.”  Albinism is part of who I am and I don’t have to let it limit my mindful retirement journey.

 

Albinism Is Never A Curse!

by Preston Mwiinga

Each and every moment I walk in fear because I do not know who will take away my life.
It is not like I am a fugitive No! But because I am an albino,
Some do not even want to seat next to me,
Eating with me is like they are feeding on vomit,
They do not want to rub shoulders with me, as if a am a curse from God,
But listen to me even as I speak with tears in my eyes,
My tears shall no longer be in a bottle, I am spitting out the bitter truth.
Let the silence be broken now, we will no longer be silent like a rock cost hit by the waves.
Segregation is bad; we are humans like you are
God created man in his own image and likeness, of which we all know.
Why kill albinos for rituals, why discriminate and laugh at us?
We say we are a Christian nation and our deeds to people living with albinism are destroying the Christian name….
Love us, care for us and here our cry.
To all the parents out there, remember that having an albino child isn’t a case but a full blessing from God, and to all those who kill albino children please change for a better because God is not a God of discrimination but a God of love to everyone….
Blessed are those that are close to people living with albinism.
Remember we are not ghosts but normal people just like you…..

 

2 thoughts on “Aging, Albinism, and Audible.com

  1. Just being different is dangerous enough. You are essentially saying that there is such a thing as literally being too “white “. I hope you will go deeper on this topic. You have a lot to share about the social and the physiological problems of this condition. And I think raising this awareness will help others.

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    1. As always, Victoria, thank you for your support. I never thought of albinism as being “too white.” But it rings true in our world. I think we have come a long way toward more compassion and respect from the old days when we labeled and shunned people as “albinos.” We all have genetic differences. Albinism just is often, but not always, more noticeable.

      Like

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