Ray of Hope

Written one week ago via Facebook as a Living Tribute to my best guy friend. Shared to shed light on an understudied disorder. Passing along to solidify the fact that nothing is ever promised and love should be shown throughout life, not only upon death.

Dedicated to Raymond Wilson, who shall forever be my “Ray of Hope”.

 


Backstory: Alpha-1 Antitrypsin Deficiency (A1AD) is an inherited, genetic condition which revolves around a deficiency of alpha-1 antitrypsin (AAT) in the blood. This enzyme is produced in the liver to protect body tissues during infection. Low blood AAT builds up and can cause liver disease. Alpha-1 Proteinase Inhibitor is also made in the liver and its job is to protect delicate lung tissue against substances released by white blood cells. Chest infections are typically controlled by the liver and it releases more AAT to neutralize the enzyme before it causes too much lung damage. But with a decrease of AAT in the blood this often leads to lung disease. [¹WNDU]


 

In my life I have delivered eulogies, added words within life celebrations. Thought long and hard about how best to encompass an existence. Today is different. Today I learned my best male friend is coming upon the end of his road. And it is so fucking unfair! He doesn’t drink or smoke. He doesn’t do drugs or lead an unhealthy lifestyle. Instead he has a genetic disorder which has overtaken his body, past the point of medical interventions, at this point.

It is said that “only the good die young” and in this case, it couldn’t be more true. It is also said to “tell those you love they matter before they’re gone”. I have decided to do just that. To give my friend the opportunity to read my words while present, so when the time comes where his spirit lives only in my soul, he will rest knowing how special he is…how loved he will always be.

About ten years ago when my job was still Corporate they decided to file bankruptcy and close several stores. West Yarmouth was one of them. The offer to transfer was put out and we received a few new employees at our store in Hyannis. Ray was part of the group. In walks this quirky, hilarious guy who knew none of us, yet fit in as though he’d been with us from the start. His sense of humor was unmatched and he was precisely what we needed when we needed it. He was like a human book of adult jokes and a glossary of terms you’d never heard before. He was quick-witted and sarcastic. He was the type of guy you sought after a bad date or the ear you spoke to when you couldn’t imagine facing another day. He was never too busy to help, in any way, and he also became a father-figure to many of our staff kids.

When I met Ray I was newly divorced. I had very little. Furthermore, I had very little faith in men as anything. Ray taught me it was possible to be “just friends” with a guy, and the payout I received in taking a leap of faith is quite possibly the most profound reason I am who I am today. When my kids needed a ride and I was stuck at work, he dropped everything to help me. If I had to take my kids to work due to unforeseen circumstances, he played with them, and kept them entertained by teaching them everything I didn’t want them to know. He was, himself, like a big kid trapped in the body of an adult. This is probably why all our kids grew to admire him so much. My kids weren’t the only Ray befriended. He played roles for many others, too. They will all miss him. My two are devastated by this news.

Ray and I both lost parents fairly close together, yet he lost both before I lost my father in March of 2008. He was there every step of the way, a soundboard when I wasn’t sure if how I felt was normal or when I wondered if I would ever smile again. He attended the Wake and checked on me daily throughout that first week. Moreover, when my father-in-law succumbed to a battle with brain cancer, Ray was there again. To cover my shifts and listen to my thoughts. It was a trying time. After losing my father I lost a close friend and then my father-in-law and finally my mother-in-law. After all these losses in a short span, I was concerned about my kids. Ray set out to assist, watching YouTube videos about loom bands with my youngest and helping my oldest set up a new IPod.

In over a decade and a half at the same job I have watched people come and people go. I have witnessed changes and alterations, some good and some not. I think the most pivotal came about five years ago when our GM was fired suddenly. Many of us were shocked and saddened. Some didn’t know what to do. Once word spread Ray messaged me asking if I planned to stay? When I told him I did, he said he also would. And so we moved on. Through the array of bodies shipped to our store, then replaced, and replaced again. We celebrated when we finally saw the only woman fit for a replacement land in our “home”. Our life as servers would make a great television drama…and Ray would certainly have a starring role.

I share a special work bond with this man. Companies such as ours enjoy high profits at little price. And so the “Ray and Hope Show” was born. It consisted of afternoons with two lone servers doing quadruple duty as dishwashers, secretaries, carry-out salesmen, and ice cream creators. It was a roughly three hour sight for sore eyes, but we always made it work. And we made it work damn good! The place stayed clean and organized. Customers were happy, albeit via sheer entertainment. Side-work was completed and the night shift set near perfectly. We were like two left feet who made great dance partners against all odds. It was my therapeutic time where I could speak my mind and know someone was there for me. Those hours, though short, served as my sanity. Alas, our final curtain call arrived many weeks ago when Ray began working less and decreased the length of his shifts. It leaves my heart heavy and my mind uneasy. How am I supposed to put on a show with people I haven’t yet clicked with? Who will scoop Fribbles while I ring, or vice versa? They don’t know how to cook so when will they know the stupid Fishamajigs are done frying? And who will make me laugh…and throw trays with me…and who will clean up the nasty bleu cheese dressing when I forget to put the bottom on the bottle?

In over two hundred months at my job I have made many friends, and watched many friends walk out the door for the last time. Their lives led them to new journeys of opportunity. They relocated or chased their dreams. They set forth on paths which kept us connected in mind but without daily vision. Our friendships remain, our lives continue. We stay abreast of what’s up by social media. If we bump into one another out in the community, it’s as if no time has elapsed. Even if brief, our conversations are never forced. They flow and cease like the tide rolling upon the shore. I leave happy, anticipating what lies ahead for them.

This current situation leaves me upset. Because a man who deserves to find opportunities and to chase his dreams must let them go. He must face the hard facts by no longer planning life but instead pondering death. He is doing so with courage and strength. He illustrates integrity, sharing his decision publicly without need for recognition. Simply so those he cares about learn his fate directly. I am writing this as a result of his choice to vocalize his situation. Not beforehand because this is his story, not mine. I’m just so darn grateful I got to be a part of it.

Dearest Raymond,

There are so many things I had left to share with you. For you to watch my oldest graduate high school and see my youngest overcome hurdles. I wanted to eat at Olive Garden and then maybe bake our own lava cakes afterward. I wanted to but you a non-alcoholic Pina Colada and laugh at Tiki Port for hours again. I wanted to hear more crazy New York City alley stories and see pictures of you under women’s bathroom stalls. I wanted to hear about your next cruise and the ports you’d visit and the hundreds of photographs you’d take. I wanted to eat rice crispy treats with you this Christmas. And bitch about annoying customers. And take pictures of the dish room. And crank call the store phone. And make up new languages. And watch you grow old…

I understand we can’t always get what we want. I know I can’t control everything. Sadly, I realize no matter how much I wish I could, I can’t cure you. I can’t swap places with you nor give you any of my organs. But I would. Because the world needs more people like you. People who give selflessly and care genuinely. People who do the right thing simply because it is the right thing to do. People who love unconditionally, like in the truest definition, and in turn make us better people in leading by example. People who help others not for recognition but because the act alone is enough to make them feel satisfied. People who don’t complain, when they have too many reasons to make it alright to. People who appreciate life, the good and the bad and everything in between.

I cannot fathom how you must feel right now. I can’t imagine the thoughts in your mind or the tensions in your soul. I can’t comprehend the tasks in front of you. I can’t pretend it all away for you, either. But I would. Because you would want to for anyone else. Because you are never jealous or spiteful. Because you celebrate triumphs with people, instead of merely beside them. Because you value relationships more than material. Because you know what really matters.

You were the exact type of friend I needed when you came into my life. Your encouragement kept me going and your praise kept me motivated. Even when I didn’t like what you said, I’m so glad you said it. It was always what I needed to hear but no one else could say. I appreciate all the moments you gave to listen to my latest issue. I appreciate more that you heard me. You have an ability to voice what others can’t and make it sound sensible. It has to do with the way you portray your messages, to people individually and uniquely. It’s one of your greatest attributes.

In this precious time we have remaining, I want you to open your eyes each day and know how much I value our friendship and how deeply I love you. You have been a gift from Heaven to me. When the time comes where your eyes open no more, when you go to rest eternally, please fly high and remember how immensely you touched my life, and how I will strive to keep your spirit alive.

Much Love Always,

Hope


Consider donating to the Alpha-1 Foundation.  For more information, click here.

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