By Amanda Swanson

(Editor’s Note:  Amanda is a member of the NFB of Minnesota, and lives in Bluffton, Minnesota.)

I stand on a crowded city sidewalk and feel that everyone is staring at me.  I’m insecure, of whom I was, who I am, and of whom I want to be.  I’m not happy.  I wanted more when I was younger.  I had envisioned my life to be picture perfect.  This meant an education, a successful career, marriage to a man who loved me unconditionally, beautiful children, and a house in the country.  These things should equal happiness, or so I thought.  Since then, I’ve had to re-define the word “happiness” countless times. 

Happiness is the one thing I have always wanted.  I throw a coin into a wishing well and wish for happiness.  I blow away a loose eyelash from my cheek and wish for happiness.  I blow out my birthday candles and wish so much to be happy.  I’ve even wanted this so bad, I got the word “Happiness” tattooed on my left shoulder in Chinese, just for good measure.  You would think for someone who wants it so bad, it would come.  But what is happiness? 

I have now concluded that happiness is something you create.  Let me explain.  I am sitting on the bus one day; we pull up to a busy transit station.  I see a man waiting to get on the bus.  He is clearly homeless, for he has dirty looking clothes, a long dirty white beard, and what looks to be all his possessions with him.  He gets on the bus.  He shuffles through the seats with his bags until he finds the one open next to me.  I have already had a horrible morning and I was not feeling chipper at all.  His off-colored bedding happens to find its way to my lap, and the smell of dirty scalp and a garbage dumpster manage to reach my nose.  I am truly irritated and disgusted.  But to my surprise, this man starts to hum a jazzy little tune, and he hums as loud as one could hum.  A baby sitting in the seat in front of us looks past her father’s shoulder in curiosity.  The smelly gentleman next to me laughs and hums even louder for the wide-eyed child.  I thought to myself, why is HE so happy?  He should have NOTHING to be happy about!  He clearly does not have a job or even a home for that matter!  Yet he was still humming to a beat I could not find.  I pulled the cord for my stop, clumsily stepped over this man’s belongings and got off the bus.  I stood there at the bus stop and thought: “I have a roof over my head, a job, and a family who loves me and supports me in every way possible.”  And I cannot hum a happy tune for the life of me, even to myself!  So, my question is, what is happiness?   

I lived a mostly normal childhood.  I had friends, did okay in school, and did all the things other kids did.  Until I reached my teenage years, I was slowly noticing a change in my eyesight and I couldn’t quite pinpoint exactly what was happening.  For example, I would be outside at night with my friends at a bonfire and somehow everyone could see me but I couldn’t see them.  I was clumsy as a bear, tripping over the smallest things.  On average, I seemed to trip on or over something at least two times a day!  But why?  I knew it was time to see a professional. 

After multiple visits to multiple doctors who could not figure out what was wrong, I finally came to one who did.  I found a nationally recognized retina specialist.  I walked into the office expecting another doctor who was just as confused about my vision as I was.  I sat in the waiting room with my mother for what seemed like years waiting for the doctor to go over my records and exams.  Finally, I heard in a low tone, “Ms. Swanson, you may come back with me now.”  I hesitated slightly, but my mother quickly grabbed my hand and led me into the small dark room.  The doctor looked into my eyes one last time and sat back quietly for a moment.  “I’m sorry, but it looks to me that you have a condition called Usher Syndrome,” he stated. 

“What does that mean?”  I quickly snapped back. 

“Whatever it is, it’s treatable, right!” my mother remarked. 

“Look, I hate to be blunt but you need to know the facts.  It’s a genetic condition, a rare condition in fact, that has no cure and will lead to blindness.”  My heart sank that very moment.  I wanted to scream at the top of my lungs, but instead I just blankly stared ahead.

The doctor continued to talk, but it seemed like he was a million miles away.  All I could feel was the gentle squeeze of my mother’s hand in mine.  All I could think about was how can I do anything now?  The thought of only seeing darkness terrified me.  The idea of not seeing a mystical pink sunset, or a lake shimmering like thousands of diamonds in the sunlight, or even simply seeing a smile started to seep into my brain.  After sitting in the office for another hour with the doctor and my mother getting all the information about this “thing,” I slowly left the office in a daze.  The following weeks and months ended up being an emotional roller coaster.  How could this happen?  I’m already partially deaf, now I get to go blind!  All I could think about were my criteria for happiness: an education, a successful career, a husband who loved me unconditionally, beautiful children, and a house in the country.  How can I go to school and get a job if I can’t see?  I can’t raise any children if I can’t see them!  And forget the house in the country; I won’t be able to drive into town!  I had every negative thought imaginable, that even a pessimist would have been annoyed. 

Throughout the next several years, I slowly dissolved my misconceptions of blindness through education at Blindness: Learning in New Dimensions (BLIND) and meeting so many successful blind people in the NFB of Minnesota who appeared to be happy.  Through my struggles of how to read again in Braille and simply to cook a meal, I was slowly beginning to hum a happy little tune in my head.  I think I have finally begun to “create” my own happiness!  Although I have yet to fulfill some of my dreams, I am beginning to hear that jazzy little tune in my head.  Through life’s struggles and challenges, life is only what you make it.  Through the years, I have felt like I have been bent, stretched, and compressed and now I feel I finally have sprung back and am ready to take on new challenges and new goals.  And that’s okay, I am happy.