Personal: crystalstair or What’s In a Name?

I’ve been sick a great deal of my life, as many of you know.  For me, life was always about finding optimism and fighting for something better.  You know, a better life, better opportunities, better health… I grew up in a farming community and my mother rarely fed us gluten, since we didn’t grow it on the farm.  You know, so I wasn’t exposed… we don’t really have a good idea as to when the big change really happened.  All I know is that when I started working at age 16 and eating out late every night after work, I started going down hill really rapidly.  My attention span started to diminish… and I found that while I was once an avid and hungry reader, I couldn’t read novels anymore.  So, I started consuming poetry in mass quantities.

That was how I discovered Langston Hughes and how he moved me.  He was a black poet in the 1920’s and 30’s who was born in Missouri (parts of which are culturally similar to the South and are frequently grouped in with the South) and later moved to Harlem.  His work talks about the oppression of his people, the experience of blacks in the South, but it also expresses so much hope.  Since reading “Mother to Son” in my teens, I have been inspired by Hughes and I really think that his optimism affected me at a time that I needed hope most.  It’s funny, retrospect, it shows us things that we probably didn’t notice the first time around… the themes that seem to permeate my life most are optimism and hope in spite of crushing defeats.

For your pleasure, I will post the poem that moved me most at a time I needed to be moved.

“Mother to Son” by Langston Hughes

Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor —
Bare.
But all the time
I’se been a-climbin’ on,
    And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
    Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
‘Cause you finds it’s kinder hard.
Don’t you fall now —
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.

And why did it move me?  Well, I knew that there were others out there who were at least as bad off as I was and they were still fighting, they were still living their lives and sometimes even reaching their dreams.  I knew that if I fought, anything could still be possible.  I had no idea that it would take so long to figure out who the opponent was… or how simple the remedy would be.  My mom told me a few weeks ago that when I was a child, my doctor mentioned Celiac to her in passing.  She said that at the time I exhibited many of the symptoms, except for the classic wasting away… my brother was the child with the failure to thrive.  She said she tried to get us both tested, but being in rural America, with rural doctors in the early 1980’s, it was impossible.

I stresses me to think about it, I play the “What If” game.  What if I was well when I went off to college?  I could have attended an Ivy League school, I could have a much different life… maybe the damage of living with undiagnosed Celiac wouldn’t have happened and I could have been more normal and had a more normal experience.

But, in saying that, in being normal, I would have lost a lot of lessons.  I would have probably taken my health for granted and done more drugs and drank more and generally abused my body more.  I wouldn’t have developed a sense of compassion for others who are less fortunate or who have been dealt a worse hand in life… I wouldn’t have understood what it was really like to be a Human.

I frequently wonder what happens to children who are prodigies.  Do they burn out early in life?  Do they turn criminal?  Do they go insane?  I saw a great deal of success in my youth, at age 15, I was a regular contributer to our local newspaper and doing the only thing in life I ever wanted to do, really.  They started paying me when I turned 16.  That was even better.  I got some national coverage for some of my photographs and I began helping to teach photography classes before I had even graduated from high school.  But that was all I had.  Moving away from that small town was exhausting, living on little more than semolina and wheat was my downfall.  I dropped out of college after my second semester, having achieved a 0.70 GPA and loosing my scholarships.

Maybe… just maybe… those experiences have made me a better person.  I certainly hope there is something to be gleaned from them other than suffering and crushed dreams.  I am thankful to have finally found out what was making me so sick… and I am thankful to be part of your healing as well.  I am mortified at the condition of the medical system in America; I am appauled at the needless suffering and agony it puts us through.  If we had cancer or AIDS or gall stones it would have been sooner (wouldn’t want to loose those pharmacutical dollars) rather than later, it would have been the doctor who did the research and not the patient who had to insist that something was indeed physically wrong.

It’s about time for my afternoon vitamins, so I’m going to leave you with these thoughts.  I’m certain you’ve had them, too, or similar ones; I see them running rampant through the other blogs.  How much we have lost, how much we have gained.  We’re not sick enough to be disabled, but we’re not well enough to be dependable, either.  It’s a horrible sort of limbo that we exist in, but we have to keep fighting for ourselves and for our kindred… those people who don’t yet know about Celiac and those who have yet to find the help and hope we’ve found in each other. 

This community is anguish and exstacy.