My Ocean’s Sweet Song
By Bryan Arnold
The day I feared most was coming. I could tell when I woke up sweating profusely. My breathing must have stopped and started quite a bit, because I couldn’t stop coughing. My mom was helping me cough, pushing on my back and stomach again and again. All night long we endured, neither of us sleeping. We were just waiting for morning to come. When the light came on I was a sickly gray, and I knew I was beginning the long journey that was supposed to help me live again. I was so scared of that journey. I was afraid all of my dreams would now be unattainable.
There were three trips to the emergency room before the inevitable day that those of us with Duchenne muscular dystrophy know is coming. The disease slowly robs us of our muscles, all of our muscles. The pulmonary function tests had shown less and less lung capacity every time I went to the MDA (Muscular Dystrophy Association) clinic, and I knew I was heading towards ventilator dependence, almost a life sentence I thought.
The day was February eighth for me, a cold dark Alaska day. I woke up feeling like I had something stuck in my throat, before I realized it was from the hole in my throat from the tracheotomy they had done. In the background I heard a sound that reminded me of the ocean. It was a whoosh, whoosh sound, constant and rhythmic and ever so sweet sounding. And then I pinpointed the sound. It was the sound of my new ventilator I would never again be without.
At second glance it wasn’t as bad as I thought it would be, except my parents were looking so anxious. I couldn’t talk to be able to tell them I was alright, that I wasn’t scared anymore. We tried pointing at the alphabet written on a torn piece of paper, but it was so frustrating. It was so hard to make them understand what I needed. We spent seventeen days in the hospital, my parents frantically learning how to care for a ventilator dependant child so we could finally go home. We spent another seventeen days, six months later when I had scoliosis surgery to correct the curve in my back and expand my chest so my new ventilator had more room to give me those lifesaving breaths. Six months of nurses, lifesaving machines, respiratory therapists, back braces and my ever so patient parents learning everything they needed to know.
It’s been a long, heart-wrenching year, but I made it through. The ventilator is making me feel better than I have in a long time. I think the finest words I ever heard came from my doctor as I was leaving the hospital. “You have just extended your life by ten years.” Those nine words will ring in my ears for a long time to come. Those words and the lifesaving melody of my ocean’s sweet song.
>> Post your comments
>> Notify me of future VSA arts literary calls
Comments
Bryan, your Aunt Betsy has told me so much about you through the years. Today was the best news! To read your wonderful essay and know all that you have achieved is truly inspirational. Enjoy your time in Delaware and Washington D.C. with your proud Aunt and Uncle. I'm thinking that you have lots more impressive accomplishments in the future!!!
- Susan S.
Vero Beach, FL
Bryan,
You never really knew me at Steller, but I always thought you were the coolest person there. Your writing is beautiful, and it really makes me appreciate the world around me. Keep doing what you love, you are amazing!
- Lorryn W.
Anchorage, AK
Bryan, You have written a beautifully crafted essay. The metaphor of the ocean reminds me how the sounds and rhythms of our bodies are sounds of the world outside our bodies. When you are ready to take a creative writing class, stop by my office in the English Department at UAA. Best Regards.
- Aisha B.
Anchorage, AK
You are truly an inspiration for all MDA kids. I enjoyed your poem so much and marvel at you strength you have to go on. All Americans should have challenges that you have had to endure. Your Mom & Dad have every right to be proud of you. Best Wishes to you at the University of Alaska this year.
- Linda G.
Anchorage, AK
Wow, Bryan! You are such an inspiration! How far you have come!
- Suzanne B.
Shippensburg, PA
It took me many years to be aware enough of my own emotions to express them and I'm not sure even if had I known at 17, I would have had the courage to share them. Thank you for sharing your gift with us.
- Bari S.
Woodbridge, VA
You are so strong to cope with your fate in this way. Next time I hear your ventilator in the library, I'll think of the sound of the ocean. It's a sound I truly love and I'm glad the ventilator is there to help you live life. Congratulations on this accomplishment from a Steller library mom.
- Anne K.
Anchorage, AK
Congratulations Bryan! The Stelller community was notified of your achievement and after reading your piece I certainly see why you were selected. Your writing is moving and inspiring and I thank you for that. Enjoy your trip and best of luck in all you do!
- Anna P.
Anchorage, AK
What a beautiful story!!! Everyone is so proud of you. Good luck at UAA.
- Donelle F.
Anchorage, AK
The journey through Fear is an amazing one when we choose to face it, to face our situation of our living existence. Thank you for this insight and for Love that is demonstrated in your story, and in Life.
- KJ F.
Eagle River, AK
Bryan, It has been many years since my girls played at your house daily. You are older now and I can tell that it has been a long journey for you. I can see that you have matured into a fine young man despite the obstacles. You have a wonderful writing style and I enjoyed your composition about your new ventilator. It will surely inspire others to overcome their obstacles, too. I know your parents are very proud of you. Hope to see you around the neighborhood! Take care!
- Cheryl C.
Anchorage, AK
Beautifully written!
- Shannon F.
Anchorage, AK
Bryan-you are an amazing young man with more courage than anyone I know. You inspire so many people and I am sure that your wisdom has influenced many people to embrace life and live it to its fullest. I am honored to know such a special person as yourself. You AMAZE me!!!
- Allison C.
Anchorage, AK
We are loving the journey as you and your family are. From Station 4B all our sincere adoration and friendship.
- Grant W. and Fire Station 4B
Anchorage, AK
Bryan, you have an ever so refreshing way of demonstrating how precious life is. I profoundly appreciate and thank you for your inspiring thoughts. Good luck to you always!
- Arno K.
Anchorage, AK
Bryan, You are truly an amazing young man. I am so fortunate to know you and your family. You are an inspiration to all! Nurse Lynne
- Lynne S.
Anchorage, AK
Bryan, you are truly one of a kind. I am so proud to know you. Thank you for sharing your story with us.
- Sandy B.
Anchorage, AK
Bryan, do you know why you are my hero? It is simple, being a hero does not mean being able to leap tall buildings in a single bound nor does it mean being able to run the circumference of the earth in under a minute. No, for me a hero is one that inspires others to go beyond themselves, a hero helps people to see the value and worth of all life.
I suppose it would have been very easy for you to just quit Bryan and ask the proverbial question everyone cries when hardship becomes their constant companion, “Why me?” But, you never did that Bryan, the only questions you ever asked were, “How can I do this better, what can I do next, how can I extend myself and how can I become a better person?”
The American Heritage Dictionary defines a hero as:
1. In mythology and legend, a man, often of divine ancestry, who is endowed with great courage and strength, celebrated for his bold exploits, and favored by the gods.
2. A person noted for feats of courage or nobility of purpose, especially one who has risked or sacrificed his or her life: soldiers and nurses who were heroes in an unpopular war.
3. A person noted for special achievement in a particular field: the heroes of medicine. See Synonyms at celebrity.*
4. The principal male character in novel, poem, or dramatic presentation.
Bryan, as far as I am concerned they could as easily stated this as the definition of a hero: Hero – Bryan Arnold…
- Harlod G.
Anchorage, AK
That was beautiful Bryan, you are truly an inspiration.
- Alisha S.
Anchorage, AK
Bryan - What an awesome piece of writing. I can hear your ventilator just reading about it! The title is so perfect. I especially liked the tribute to your parents.
- Betsy B.
Wilmington, DE