Ugly Like Me...

The light. At night. Goes on.

“If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.” ~C.S. Lewis

 

Memories have been coming back to me in flashes, sequences during dreams. They start with Peter, one of my closest and longest confidants in this life. In the dream he is walking me through high school (he played the drums in the band, I was in the musicals), and then he’s with me in the Bronx (I followed him to college) and through our life after. It was an overlay of his life and mine. I saw things I thought I had long forgotten for good. I think I chose to forget certain things to survive. I’m just too soft. I am an Empath. I couldn’t afford to remember.

A flash to us in the Bronx, laughing. Dead people. She’s died. He’s hiding under her body. Shot. Pizza. Bound. What they did to those girls. I see one giant tear on my face. I’m in a stairwell and the swat team is there. I step over them to go study. The apartment. The rats.

Running through the Poconos after his first marriage fell apart, before he earned his doctorate and I was diagnosed. I could see the long drive to him, visiting his parents. I could see the worry right through me. I was afraid I might lose him and drove hours away to go for a jog. I needed to be beside him during his Season in Hell. Like Rimbaud, we all have one, or two, or five. Depending on who you are and how long you have lived.

Side note: The only one who doesn’t fit into this is Keith Richards. Homeboy can climb a coconut tree in his late 60’s, fall, crack his head open and roll over and see the coconut was cracked too and drink from it and walk away. After years of reckless drugs and sex etc. He is happy and free and untouchable.

The dream is him walking me through my life. Through times I would have sworn never existed, but the dream brings them back.  The violence of Fordham was all buried deep below. These happened. I had to forget. I forgive myself. I know why. Near the end of the dream, I see myself covering up my ears. Everyone’s yelling, “Jamie, don’t look into it! Don’t look into it!” But Peter is not yelling.  I could see a playground. An abandoned swing. Patch of grass in motion, like a breeze was moving through it.

The invisible breeze is more beautiful than the blades of grass. At first the grass is how I envision Hyannis Port, only this blade was creeping up through gravel. Pan out to an old, worn and torn, paved playground.

Cracks in the pavement looked like the pavement was trying to tell me something. It needed grass. The grass was reaching out, “Help me!”

I turn and ask Peter what they mean, “What light Peter? What do they mean? Hurry!? I don’t know where to look!” Was it a solar eclipse again like in 5^th grade when Mr. Peters made us draw the blinds? Don’t look into the sun. I remember the drill, I could see it like I was a student again.

I turn to Peter and I ask him again, “What light buddy? Please, hurry!” I was so confused and everything was muddled, and yet, loud. It felt loud and confusing and fast like how I imagine it feels if you are on Who Wants to Be a Zillionaire and you have three seconds left to answer and no lifelines left.

I see a porch flash and then I do the unspeakable, I look directly into the light; the light everyone warned me not to look at. The light we were convinced would melt our eyeballs, in a single blink, when I was eleven, I was now too curious to not let melt me. I am laughing at myself. Of course this bugger looked into the light lol.  In my defense, I wasn’t convinced it was indeed a solar eclipse. I was convinced it was something else.

Peter lets me choose. He doesn’t flinch. He doesn’t stop me. I can’t tell if that is a smile on his face. I look at the light, and my eyes open. The dream is over and I am sick in bed. The same bed. It’s grim reality.

For the past few days I wonder if there is some other meaning to the dream and the light. It sounds like a near death experience. A journey through life; a childhood I’d almost long forgotten up until now and the choice accompanied by light. I start to panic and sweat at the thought. As much as I long to see the ever after, I know I am tired and long for my maker and my loved ones passed, I’m upset with myself for quitting.

Part of me has always known I don’t belong here-THIS is WHY I always believed in something else. I was not raised to believe. I came to these conclusions on my own, alone. It was a feeling. The only way I could understand and survive. I have always known that all there is love and it is all we take with us. My entire life, even though I have AlWAYS felt inherently alone, no matter who I was next to, I sought love, fought for love and always aligned myself and surrounded myself with it. I do not surround myself with haters. Love. And despite feeling alone, I am always surrounded by people I have met and loved. So, what did I just leave behind by agreeing to go? Would my children grow up pissed that I quit? Definitely. I did not choose to stay to LOVE them. THAT is what I would have left behind.

I had an infusion last week and it was the first time I looked at my doctor, his white hair and cowboy boots, he’s handsome and witty. He didn’t like what he saw and I looked up at him, crying and asked point blank, no time to blink, “How will you feel when I die? Doc, this won’t end well. You are going to watch me progress (what a euphemism for degenerate). Are you going to be okay? What will you be like at my funeral. It’s on doc, and it’s running. I feel it.”

He sat on the chair with wheels and scooted next to me and took my hand, pretending he cared about my blood pressure. He didn’t miss a beat and smiled like a father would to a child. He is a man of numbers and said he had a plan. He had it all worked out. if you consider the average mean of his parents and grandparents etc.’s life expectancies, the worst-case-scenario is he will perish at 80 and by then we have blah blah years and a cure lol. He made me laugh. I wiped the icky mess off my face, it latched onto my sleeves I had pulled over my knuckles, and I said, “You know, the most important thing to remember is I will kill you if you die first.” He laughed and we let it go.

He didn’t factor in what I have learned so long ago-we do not control a thing. Even if the numbers are accurate-how does he know he won’t get hit by a drunk driver tomorrow?  I never factored in MS. I had a graduate degree, a career a home and a life and running was such a passion and kids and the sun and I could hear them in summertime laughing outside, running with thick grass padding their bare feet. I never factored in MS. I don’t control much. Crunch the numbers all you want. It was still a sweet attempt. I wanted to hug him, but I didn’t.  I stopped crying though. I know it hurts him when I cry.

The dream, me asking the doctor what he would do when I died, all adds up to this-this time it doesn’t feel like the sick will go away. Everything is coming back to me now. This has been a pretty severe exacerbation.

With all of this medical ick around me, I couldn’t help but wonder, after these dreams, if that light wasn’t just a light or a RANDOM dream about a solar eclipse. I can’t help but wonder if that was THE light at the end of the tunnel and I just agreed to go. I looked right into it. I didn’t deny it. I didn’t feel alone. I wasn’t afraid until I woke up. “Shit, did I just give up?” is my first thought after each dream.

Peter found love again, and married the most perfect woman he could have ever written into one of his brilliant scripts. She matches his intellect, his art, speaks many languages and carries the same moniker as his favorite opera, Aida. She looks like the princess in Aladdin. They just had a baby.

The baby shower was down on Jane Street and I have never felt so full circle, so complete. My dear friend, childhood, through college, through life friend who is older than me and we were sure would not have biological children-would, and with his soul mate. I couldn’t ask for more than that. I sat and watched and celebrated. I looked off the terrace in the village, over the other buildings, with my friend.

It was the first time I felt like we had arrived.

After the dreams, I texted him explaining I needed to see the baby; that time is flying by. We talked about poetry and, finally, I fessed up. I told him about the dreams.

“I think I just let go, Peter. I think I told God I was ready when I looked into the light. I need to see the baby before I go. This has been the longest and craziest episode in my memory.”

Peter is this gentle atheist and poet. A romantic. A doctor in romance. He always was, even when we were kids. We’d be menacing something and he’d be running with us, but with a book of Sylvia Plath poems under his arm. All of us enveloped in darkness and youth. Always a book of poetry under his arms.

Peter didn’t flinch to my dream confession, which meant to me that it wasn’t rehearsed or bullshit. It was an honest opinion. He simply texted back that he didn’t think the light in the dream represented the ever after that I believe in. I did think about his composure in the dream when it came to me looking in the light. His face was almost daring me to look into the light in a calm, “trust me”, sort of way. He had a smirk on his face. Never smug, a smirk nonetheless.

“My friend, the light in your dream, the one you looked into, I believe it represented the light within you.” He told me I was always a light, one that couldn’t be denied, and to not fear. I woke up because of my light, because I didn’t deny it. It was symbolic of my light, not THE light that is my ultimate goal. He believed I was actually choosing to stay, to acknowledge it, and use it to go on.

I will always feel alone. I did before the MS. I have always felt alone, no matter how love is around me. I was born this way. Maybe MS made me feel like I had a reason to feel so alone. But I cannot lie, I am a loner with people around me. I drift into corners of the room, a book, my mind. Always having to remind myself to go back, to be with them-to love.

But for the night, I settled in without the feeling of being alone. It was a luxury offered to me by his words, that text. I was so tired, and scared. His words laid in bed with me and hushed me to sleep. Maybe I wasn’t giving up, maybe I was acknowledging that there was still a light inside me? I was choosing to stay.

I fell asleep soon after and I didn’t dream that dream again. I dreamed of babies. I could smell them. Rebirth. I woke up, not in night sweats or panic. I felt a calm. A rebirth. The smell of lavender and baby powder. I could feel the memory of my children in the summer, outside and below my window, playing in the yard. The wind and the blades of grass in summertime. This time I could hold them, AND the wind. I was calm. I was ready to go on.

Thank God I always chose love. I always chose my friends as family. I filled my world up with love. It's so necessary because texts like Peter's, they are the love that always leaves the light on, knowing you are afraid of what comes with the dark.I, and the light, go on.

Call me anytime. Things my grandkids should know.

Before I say what I need to say, I need to say this about a question my friend “C” and I have been wondering for years- why do people criticize other people’s social media choices? I always wondered about my friend’s question. I adopted it as my own. We have wondered together for a few years now.

Why? Hide them. Don’ be friends. Don’t look. HIDE THEM. Block them. The why always escaped me because there are so many reasons NOT to judge people for how they use their social media. I will say it again. Don’t be Facebook friends. Hide them. Block them. HIDE THEM.

After I shut down my personal page, it hit me. A longtime friend just said to me, “Oh, dude I JUST saw you on Facebook…” Like he just caught me with a smoking gun and a dead body because I'm off Facebook now "personally". I think I called him an “asshole” and smiled and continued reading. It would take some explaining. But yes, he saw Ugly Like Me, an MS page, on Facebook. I manage it. It’s my MS blog’s page. I share that aspect of my life on there. That’s the point. So, umm yeah, BUSTED. You got me!?

When my friend said this in jest, it hit me. People will criticize how you use Facebook and social media because we love to criticize everything and everyone, everywhere. He was just saying it in jest, but you know there are half-truths revealed in such jests. It’s what we do as humans. We hunt each other down with criticisms, nothing constructive, just for fun. We catch someone, unhook them and throw them back into the water again. Repeat.

I am no different, but I am trying. It hit me when he was messing with me-why should social media be any different?

I DID deactivate my personal account, but not my MS pages. I fear some people worried I didn’t “like” them or they hurt me. I hate hurting people. To those people, “No worries. I am still here. The MS part of me anyway.” These days MS is getting bigger. Sadly, that is the biggest part of me lately, and I have much to share and look forward to listening to your stories. I find them inspiring and healing. I just don’t have a personal account anymore.

So, why did I deactivate my personal account? What’s the difference?

First let me say Facebook can be a cesspool of drama and ick. It can ruin lives, cause drama etc. BUT, It depends on who is using it and why. Like any tool-it can be used for good or bad. A knife can be used to cut an apple or…yikes! For me, it saved my MS. I suddenly wasn’t isolated when I was sick and alone. The depths of my despair and depression were unknown until I spoke about it, wrote about it, and shared on social media. Finally, I wasn’t alone. Knowing that single truth has been so healing. I don’t think I’d have made it to the six year mark with my legs in tact (mostly)  if I hadn’t used it as a resource.

You don’t need multiple sclerosis to understand. You need something that weighs you down, something you can’t seem to get above, something that takes your breath away and sends your heart racing to GET it. If that is you, please know, you aren’t alone. That is why I started Ugly Like Me. That’s why I won’t let it go.

With MS and social media and technology, we can disseminate information and feelings that inspire us to heal. We can create technologies to adapt to how our disease presents. There are applications to help us better manage our disease. We can share information at lightening speeds. I organize with people from all over the world; people I would otherwise never have known. It is a magical tool. A gift of healing.

In my personal life, however, Facebook has done quite the opposite. It ruins families. People who should be interacting, calling each other, wishing them a “happy birthday”, holding hands, showing up, were using Facebook as an out, an excuse to do none of the above. People no longer have to call, or send even a weak text, they can say it on FB.

OR, they have evolved from the Facebook out and don’t get in touch at all but your pics and life are free. If they feel they got enough of their “family” by stalking walls and looking at pics, they don’t need to say it at all anymore. They have their fill without the drama. Facebook should be a supplement for families; a way to enhance when there is no other choice and we can’t engage in other, REAL ways of interaction, but it should never be a substitute for family. I'm tired of watching the destruction unfold on a computer monitor.

Facebook gave me many things; hope, a future, a way to make a living when I felt I was nothing and useless. Sanity during illness. I could see my grandfather when I was states away, while he was still alive, but very frail. But it cost me something dearly. It cost me my family too. I won’t let people “check” in on me to satiate their fear of real, meaningful, functional relationships. I won’t.  So I deactivated.

So, there’s your answer. That is why I choose not to reactivate my personal account. Personally, it took too much from me. But with my MS, I want to believe that whatever the heck is happening, I can use it to help someone else. If I don’t, I will live a life of pity and without purpose. That is my greatest fear. I need to find my Divine Purpose before I go on to the next world. ULM stays.

I feel quite pathetic lately. Perhaps even embarrassed. I won’t go into details. BUT, I hold on to this-if I keep Ugly Like Me, if I help someone, somehow, in some way, then my life has had purpose. That’s all I want my kids to get from knowing me. That we are endowed with these unique talents. Life’s circumstances, how you handle them, is what brings that OUT of us. I don’t care if it’s something “tragic”-as long as it comes out. I NEED them to know this.

Even if it’s small. Or icky. Or painful. I want them to know I had the courage to stand by whatever purpose this universe has dared me to find in the shittiest of situations, and nurtured it until it came out.

I want them to watch me do it face-to-face, not via Facebook. I want them to know my heart from words spoken to them, not through some monitor or page where they just happened to bump into them. Not just from social media. In case there are things I don’t cover, in case there isn’t enough time- I want them to have a paper trail, so they can hear my voice, my tone, my heart when I am no longer able to be in front of them. But while I am, I will be. I won’t use Facebook as an out of a difficult relationship.

It’s not easy for them to understand why I am always in my head and my body. Why aren’t I playing? Why do I cry? Why do I type so much? True love is messy and ugly close up. But we handle it. I fail a lot, tut I try, and I don’t run from my kids and my husband (poor choice of words). So, that is my answer. My personal life will be lived. The MS page, to gain a wider scope, must be lived with social media as a supplement. I can’t confuse the two anymore. I don’t want to.

My MS page allows me to do great things for people who feel alone and isolated due to sickness. It allows me to reach out to them in a thick darkness others don’t dare to separate. It allows me to advocate and speak through it. It allows them the chance to do the same for me. But I don’t know a damn positive thing my personal page has ever done for my family. So there you have it. Call me anytime. OR, maybe someday, I will get the guts to call you.

Footnote: I have a good life. I was raised by a GOOD family who loved me. They deserve more than Facebook as much I do. I know my grandfather would agree.