Seems like as my age increases, so do the chances that someone will tell me that I should write a book about my life. I suppose that’s true of anyone, but I feel like I get told that same line far more frequently than the average bipedal mammal. Although I don’t know if you can really consider yourself a card-carrying biped if you don’t walk and never have.
Hi, my name is Nathan Herman… I’ve known Les since I was a teenager (I’ll be 33 next month), I have SMA type II – http://www.mda.org.au/Disorders/Atrophies/SMAII.asp – and I’m writing a book which I will begrudgingly label an autobiography. Although it is true that the majority of the content of this memoir is centered from my point of view, I am not the hero of my own story, I’m more of the damsel in distress. I’m the enduring apostle, the loving Herald, the bard dedicated to singing the praises and building the immortal legend of the woman who saved my life.
Her name was Ali, and six years ago she lost her own life.
About six years before that we fell in love despite the fact that we lived over 3000 miles apart. I was 20 years old, I weighed somewhere around 35 pounds, was bedridden, suicidal, and on hospice. Ali had just graduated high school, recently attempted to commit suicide, suffered from depression, anxiety, and a few minor to moderate learning disorders. Both of her younger siblings had special needs… Her younger brother is non-verbally autistic, and her sister has Williams syndrome – https://williams-syndrome.org/what-is-williams-syndrome. I excelled in school up until high school where I nearly flunked out, I’d never been in a relationship, and had three completely able-bodied younger brothers. Ali and I met on a message board for fans of punk music in general, and the band Green Day specifically. I mistakenly thought she was gay, and she correctly thought I was a geek. We were friends for a few months before I realized she was hitting on me. We fell in love almost instantly. She lost 40 pounds, I gained 40 pounds and she flew across the country to live with me. We saved each other’s lives, though for Ali it would only be the first time either figuratively or literally she would save my life… It kind of became a habit for her in intervening years. That’s the extremely condensed cliff notes version of our early relationship. If you’d like to read a little bit more about this, here is a article written about this a few months before we moved back across the country to get married: http://www.heraldnet.com/article/20050214/NEWS01/502140713
Ali would prove to be first person to consistently tell me that I should write a book about all of my experiences. Though I didn’t think that I had really done enough to warrant an entire chronicling of my life, I did admit that my disability had given me a somewhat unique perspective on the human condition. I felt like unless you had done something truly noteworthy or were famous in some way, you didn’t really deserve an autobiography.
A few months before Ali died, I relented and began writing a few prototype chapters for what would become my book. It would start out as my book, but end up as Ali’s book. To say that we were in love would be a disgustingly serious understatement. Ali and I wove the very fabric of each other’s lives. She was my best friend, my wife, my caregiver, and my muse. Most of my life I wanted to be an artist, and after finding Ali I was the most productive and successful I had ever been. So when I lost her, I shut down for about a year. I disappeared into a haze of pain killers and anti-anxiety drugs. Those months are a mottled, ugly fog for me.
When I managed to emerge, I knew what I had to do. I had to tell the world exactly what Ali had done for me and who she was. I wanted to tell all of humanity exactly what they lost. I was able to get around my aversion for the audacity of writing an autobiography by telling myself that it wasn’t REALLY about me, it was about Ali. I had never seriously written anything in my entire life, and hadn’t even tried to write anything more than emails and journal entries since high school English.
So how do you start writing about the most important thing in the universe to you when you have zero confidence and experience as a wordsmith? I clenched my jaw, and just… Wrote. Slowly, one chapter at a time, over the course of years. Just like I waded through the hip deep quicksand of grief day after day, I trudged through Ali and I’s story one page at a time. Every week I would try and focus on one story, one memory, and drag it out of the mental vault where I kept all of my most painful and cherished experiences. As my condition has left me practically motionless save for the use of my right thumb, I write almost solely by dictation.
The training text for the dictation software states that you should try and speak evenly and without emotion, like a television newscaster. Yeah, good luck with that when when you’re narrating the most painful months and years of your entire existence.
Nevertheless, I have come to a point where I need to begin thinking about publishing this story which has become nearly sacrosanct to me. I’ve heard almost nothing but horror stories about the entire process of getting published. Stories of heartbreak and merciless rejection. I’m a little bit about delicate snowflake when it comes to critique and ESPECIALLY rejection, so the concept of blindly throwing out my and Ali’s story for strangers to swat down seems like excruciating torture. One thought, one fear screams maddeningly around in circles within my head:
What if it’s not good enough?
Every time I’ll be rejected, it will be like someone is telling me my life isn’t good enough… Ali’s deeds of heroism and love are not compelling enough for the average reader to plop down five dollars for. It’s one thing when you craft a story from scratch from characters and settings in your imagination… It’s quite another when it’s your life; when it’s the memory of your most beloved that you are trying to market. The thought of failure and rejection is paralyzing (something people already think I am, anyway). So how do I move forward from here?
I don’t know yet. I think I’m just going to have to close my eyes, take a deep breath, and jump. The same way I woke up that first day after my wife had died, the same way I embarked on a quest to immortalize her memory while knowing nothing about the craft of writing, I must now see if the past five years have been a fool’s pursuit… To see if I’ve been chasing windmills. Because really – that’s all you can do in life. Sure, you can be afraid to engage, to put yourself out there… To talk to that girl, to apply for that job, to be true to yourself, to risk failure, or to face death… But you can’t let it stop you.
For every person that’s told me that I should write a book, I’ve had 15 tell me I’m “inspirational”. As flattering and well-intentioned as that is, it’s bullshit. I’ve done what billions of people have done since the dawn of man: I’ve lived my life.
I’ve loved more deeply than I ever could have imagined, I’ve left everything I knew to protect that love, I’ve seen great and terrible things, I’ve been submerged in the blackness of the brink of death only to come back to the land of the living staring into the crystal blue eyes of a girl named Ali. I have touched the sun and I have lost everything. All of those things are experiences however, not accomplishments. I hope that if people do find inspiration in what I write, it’s not because of my disability or the tribulations that I’ve endured. I hope it’s because I was able to help them get to know the personality and feats of love and courage demonstrated by a 5 foot tall, painfully shy girl from Boston.
Anyway, I’d like to thank Les for allowing me to ramble on his blog and thank you, the reader for actually making it this far. If you’re in publishing, an avid reader, or just a believer of the concepts of hope, love, and salvation, feel free contact me.
Because, man… Have I got a story for you.