Hypnotic Eyes
May 9, 2017

Chris and I didn’t get along perfectly. It would have been nice if things turned out differently, but one thing I’ve learned in my 30 years of life, is that the world throws a lot of things at us that we cannot change after they happen. All we can do is accept our mistakes, decide to do better, and then move on.

In 2010, I attended an event at Silver Sands Beach called “Hands Across the Sand.” I was introduced to Chris there. Right off the bat, he made me nervous. Everything he asked me about myself was normal – what art I liked, what my education was, what I did for a living… all the usual things you ask people when you first meet them. All of his body language, his tone of voice, it was all as normal as normal could be. But you see, he had this intense gaze that was like a knife just jabbing right into my chest and refusing to budge. And I have this problem where I can’t hold eye contact with people because it’s too uncomfortable and at times painful for me. No matter how much I wanted to, I could not look away from Chris and I was frozen in place. This scared the hell out of me, but at the same time, I was fine with it.

Suddenly my mother needed help with something, so I had to end our conversation. I did not speak to Chris again for the rest of that event. I look back on that now and wonder to myself, what if I had spoken to him again? Would we have become acquaintances, or even friends? Would the dynamic between him and I, have been totally different, or was it doomed to fail all along?

Fast forward to 2012, when my mom and I opened our own thrift store. While we were cleaning around the store’s front entrance, this guy came strolling up to us with a mild limp. He had a big smile and bright eyes, but more importantly, he was confident. He inquired about our store, and I admit we both immediately noticed his thick, deep voice. I didn’t care to ask why, because I had known this guy for all of 30 seconds and it wasn’t my business. Not to mention one of my uncles had the same kind of voice, and every time I saw him when I was a kid, he was in a bed or in a wheelchair. Eventually, my mom asked this guy why he had his voice and his limp, and he explained he had recently been diagnosed with ALS, or what some people refer to as “Lou Gehrig’s disease”. Sooner or later while the three of us were talking, he looked over at me and our eyes locked. A nervous feeling swept over me and I asked him, “Haven’t I met you before?” He had no recollection of who I was, and I didn’t immediately remember ever meeting him in the past. Our conversation pretty much ended there with him introducing himself as Chris, telling us his apartment was right above our store, and that if we needed anything we could ask him. Like I said before, confident.

I never told him this but right then and there he left me with not only a feeling of nervousness but also feeling happy to have met him.

So I ask myself again, if I had become friends with Chris back in 2010, how devastated would I have been in 2012 when he was diagnosed? There’s a part of me that believes for my own sake, it was better for me not to have had any sort of bond with him before then. But another part of wishes I had had that bond, because then maybe I could have understood better and been more comforting toward him than I was.

I think about two moments in particular that are so memorable for me, for many reasons. The first is when Chris needed help reattaching the door to his medicine cabinet. Of course I’m dexterously challenged in my own way, but I was glad to help. When I walked into his apartment with him, one of his cats was there staring at me. He warned me that she didn’t like people but I called her over to me, and she let me pet her. Chris gave me a big speech about how strange this was because this cat only liked him, and as soon as he finished talking, she turned around and swatted me. He smiled for a moment and I think he might have been jealous. That’s okay, because we cat lovers are like that. In any case, Chris showed me to the bathroom, and after swearing up a storm in there for a good 15 minutes, I was able to get the door reattached. I remember Chris wanting to assist, but knowing that he wasn’t able to, even though he was standing there and would seem “able-bodied” to anyone who didn’t know him. That’s the crushing reality of ALS – it takes your body but leaves your mind intact. After that ordeal, we went outside and chatted for a while. What was interesting was he asked almost the exact same questions he had the first time we had met, and I probably gave him the exact same answers. I recall him smiling at me when I talked about my art and my education, and even though in that moment I still didn’t remember meeting him the first time, I think he may have remembered me. Now, I mentioned before that making eye contact is difficult for me. But having any kind of physical contact with people, even shaking hands, is difficult for me too. Chris thanked me for helping him and reached out to give me a hug. I didn’t feel like going into my speech about why I don’t hug people, so I let the hug happen. That was the first time in my life that I had hugged someone, and it felt normal. Here’s a man who had a terminal illness, and yet he had the power to hug me and make me feel normal. I challenge you to find another soul who can do the same thing.

My mom has a condition called multiple sclerosis, so she had an extra walking cane lying around, and asked me to bring it to Chris because he had mentioned having more difficulty with walking. Chris was in a frantic, agitated mood. He had been working on a huge drawing, but when it came to the finer details, he didn’t have the fine motor function to draw them. After trying to find his glue-gun to no avail so we could rig together a tool for him to use to make things easier, we got on the subject of the drawing itself. The drawing was morbid, but my perception of death is not the same as the average population, so my reaction to it was positive. Chris just smiled and put up with me. We had known each other for a couple of months up to this point, so I think he was getting a sense of the sort of person I am. He then mentioned that he had to get ready for a doctor appointment, and mentioned he was nervous. I asked why, and he said it was because he had to have blood drawn. I told him I understood because of my issue with my arms, and how I don’t like it when people touch my arms because I’m afraid I’ll lose them. He told me that one thing about having ALS that frightened him was losing the use of his arms. I had a similar conversation with my mom after she was diagnosed with multiple sclerosis. I told Chris something like what I told her, but speaking to him and what he was going through: “I want you to know that no matter what people say to you, that there are many people who have lived with ALS for a long time and have lived real lives. This does not define you. No matter what happens, you will always be Chris.” He cried and so did I.

I don’t want to talk about the negative things. Maybe far off in the future I will write about why Chris and I didn’t always get along and why we had to stop being friends. But right now, I just cannot do that. His friends and family are grieving, I am grieving. Yes, I stopped talking to him over 3 years ago, and still, I grieve. I grieve because despite all that happened, I think of his art and how alive it is. He was more than talented, he had a way of drawing and painting that could suck us in and never let us go. Just like his eyes, he could hypnotize us with his art. He had a profound effect on me during the time I was friends with him, and I will always cherish that. Not because of anything he did for me, but because of what made him who he was. One important lesson I have learned from life, is that the body can die, but what a person does for you will remain forever.

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What is ALS?
August 15, 2014

Amyotrophic lateral sclerosis, sometimes referred to as Lou Gehrig’s Disease, is a neuromuscular illness. ALS causes the death of motor neurons in the central nervous system. ALS is progressive, which means motor neurons do not die simultaneously, but one at a time or a small number of them at a time. The loss of mobility will also prevent adequate motion and exercise needed to maintain muscle mass, thus causing muscular atrophy. Most often, people are diagnosed after the age of 40. The average life expectancy for a person with ALS is between 2 and 5 years, however some individuals have lived less than 2 years. Others, like the graffiti artist Tempt, have lived for over 7 years, and in a rarer case, Stephen Hawking has lived with ALS for over 50 years. A large percentage of people with ALS die due to respiratory failure. ALS is always fatal.

Symptoms include difficulty swallowing and speaking. Muscles may ache or burn after routine exercise. Other signs are a limp or “dragging foot”, and a thick, deep voice, similar to cerebral palsy. ALS’s likeness to other neurological and neuromuscular illnesses makes it difficult to diagnose.

Yesterday, a local musician I’m acquainted with, posted a video of himself doing the ice bucket challenge for ALS. The purpose of the ice bucket I still don’t quite understand, but the videos that people do involve shout outs to friends/family they know to donate to ALS research. I appreciate the sudden outcry for effective treatments and a continuing search for a cure for this disease.

I have a feeling that such an outcry is late, because it takes a lot to understand what ALS is. Not just what it does physically, but what it does emotionally to those who have ALS, and what it does to their family members. There are many serious and terminal illnesses that people can go through in solitude. But when one person is diagnosed with ALS, their friends, family, neighbors, co-workers, are all diagnosed with ALS too.

It takes away your energy, and it can make you feel like a burden to other people. You can’t do everything that you used to do anymore, so you have to rely on people to take care of you. And if your caregivers aren’t doing their best to look after you, you can’t always say what you need, how you need it and what is hurting you.

You cannot control your body, you can’t touch your body, and in order to get somewhere, someone has to carry you. Simple tasks like going to the bathroom without assistance, brushing your teeth and hair, even scratching an itch are now a challenge, and as the disease progresses, impossible.

If you want to spend time with your friends, you are either too tired or don’t feel like struggling to be part of the conversation. You have to stop driving because sometimes an officer might confuse your delayed speech for being intoxicated. Sometimes you may feel too embarrassed to go out in public, for fear of what people will think of you.

Sometimes, your friends or family get mad at you if you can’t write back to them or just don’t feel like it because you’re exhausted.

But most of all you are frustrated, because you can’t change it.

I once told someone I knew who had been recently diagnosed with ALS, that the human mind is very powerful. That maybe the reason why someone like Stephen Hawking has lived so long with ALS is because he lives a real life, not a prolonged one. That this does not define you, and you will always be who you are. ALS can take away many things, but it cannot take away your mind.

Since we have to live with ALS, we deserve to live well. We deserve love, patience, and empathy. We deserve to be treated like human beings. And most of all, we deserve a cure.