A chance meeting

Today I went on what I perceived to be a new adventure. A music festival, that my now ex invited me to, those many months ago when we were still happy.

Despite our breakup I thought it prudent to still attend. I love music and freedoms, everything this festival was about.

But I didn’t expect to find what I did.

I thought I’d find myself again, something that in recent months I felt I’d lost. I give so much of myself in relationships. I give everything. And it’s not always reciprocated. In polyamory, it’s very often not reciprocated. But that’s who I am, and I refuse to stray from my truth. I will give until nothing is left, and I am often left alone when someone moves on to another they can receive more from.

I live with a chronic illness that many will never understand. It consumes me daily, and yet I am always optimistic that I have something extraordinary waiting for me out there. That maybe I was given this disease to prove how much I can handle, and maybe one day I will be given something lovely in return.

Tonight I felt sad. Overwhelming sadness that came out of the depths of my being and brought me to a stand still. So much so that in the middle of a festival I had to sit down and feel it moving through me.

And during this sadness, someone found me on that bench. I don’t know who he was. Maybe an empath, maybe a psychic, or maybe someone who just understood deeply my pain. He touched my hand and asked if I was ok. I said “sure”, not wanting to ruin anyone else’s mood.

But this man looked at me, and when he did it was like he looked inside my soul. He saw everything that was me and understood.

And he said, “I see your pain. And not the physical, though I know that also hurts you.”

I was confused, and thought he might be high or drunk.

He said, “You’ve met him, you knew him well, and he could have been your love. But he chose another, and thats on him, not you. You are exceptional.”

And with that, he got up and walked away.

I will never forget those words for as long as I live. This man who didn’t know me, saw inside my soul, inside the world.

He saw my sadness at the loss of love in my life, and though it wasn’t great news, it calmed me in a way I can’t explain. He took away my sadness. He took away my pains. And when I feel pain at the loss of love again, I will remember that I had it once.

I’ve lived a life worth living and loving.

Mommy, make it go away

When we were sick as children there was always that one person who could make us feel better. Or at least help us get through our qualms faster. It could have been a favorite aunt, a grandparent, or an older sibling, but for me as an only child, it was my mom. And when I was really sick (with a bad cold, or the flu, or maybe belly aches,) she became ‘Mommy’, and Mommy could do no wrong. She anticipated when I needed hot tea, another warm blanket, help to the bathroom,  or sometimes just a hug and a channel change (our first cable box in the 80s didn’t have a remote). When we were young these relatives that helped us were more like superheroes, they could do no wrong, and they cured our ailments with a well timed cup of hot chocolate.

I miss those days. The days of waking up and only needing to holler down the hallway for help, and in flies Super Mom to the rescue. But those days are long gone.
I didn’t even have to open my eyes this morning to know it was a bad day. Every inch of my body was silently screaming. The trek to the bathroom was child’s play compared to the excruciating job of getting up off the toilet once finished. My knees said no. My hands and wrists said no. My arms and shoulders, feeling like broken bones flopping around inside my skin, said no. If only Mommy had been there to help. To soothe me with soft words and French toast.

Everything  hurts. My hands are the size of baseballs, my fingers won’t bend. Crying does nothing to help soothe except bring my confused cats into the room with pleading meows to feed them more. Oh the joys of motherhood.

I want some hot tea. I want to watch Cartoon Express on USA. I want hot oatmeal and another blanket. But no one comes when I holler down these halls. The pain stays.

Gone are the days where our knights in shining armor are here to make us well. Gone are the days of walking into a kitchen to a ready made breakfast. Gone are the days that a hug makes all the difference.

Gone are the days of Mommy making it feel better. I hurt all over. And no one is here to fix me.

If you would like to help me, please visit my donation campaign at Christine Lilley’s Life Fund

I walk alone

I know a lot of people who have a problem with being alone. I don’t just mean relationships, as in they have to be in one always, though that is correct for quite a few of them. I mean generally they have issues with being alone in life. They don’t like spending time on their own, preferring a constant stream of people and activities to keep them occupied. The idea of going to a movie theater or a show without a companion is a preposterous idea, something to not even be considered. They even get antsy if their weekends aren’t filled with a myriad of activities, involving friends, family, and generally a crowd.

I think this is a really unhealthy behavior or mindset to have. I believe that it’s important to know how to be by ourselves, and are even comfortable doing so. A wise friend of mine once told me ‘if I can’t be happy when I’m on my own, how can I expect to be happy with other people?’ And she is right. Where is that fear coming from? What makes people so afraid to be alone, to be on their own?

Well in my case, I’m not. I think it stems from being the only child of my parents. Early on I had to learn to be happy on my own, to be able to entertain myself. I think this is also how I came to have such a vivid and creative imagination. Then later as a child of divorce, being ferried between two parents (including one who moved a lot), entertainments had to be created when playmates were few and far between.

To this day, as an adult, I still enjoy time spent alone. I love going to movies on my own and never having to deal with an annoying movie chatter (a companion who talks throughout a movie, especially during important dialogue), I enjoy shopping on my own as I only have to go into the stores I like (never getting caught in a snobby shoe store for hours on end), and I adore going to the beach on my own ( I can leave whenever I want, which is usually early on because I get bored). I’m comfortable in my own skin. It doesn’t bother me if I have no plans on a weekend. I’m ok with staying in on weeknights with a good book or my artwork. I’m not filled with anxiety if an entire day is spent on my own, with no other companions but my two kitty cats, who can be quite entertaining to watch as it is.

Now, don’t confuse me with being a hermit, or recluse. While I enjoy time alone, I also love being around people. In fact I’m a real people person. I make friends easily. I’m very comfortable starting a conversation with strangers at Starbucks, or the couple standing in line behind me at the local gelato shop. I have no problem asking for directions, chatting with the old biddies in the produce section at the grocery store, or striking up a conversation with the handsome guy sitting two seats down from me in the theatre. I like people. And I like alone time. I’m versatile like that.

But I still don’t understand why others are so afraid, and why there seems to be a negative stigma around people who are alone. There’s nothing wrong with being by yourself. And if I were on the street and saw another person walking on their own, I wouldn’t jump to a conclusion about them. Unfortunately, I’ve seen it happen though. In fact it happened to me last night and I’m still puzzling over it. I just can’t grasp why the sight of me on my own seemed to be such an issue.

After a lovely evening at the season opening of the Hawaii Symphony Orchestra, that I attended with a companion, I arrived home and decided I wasn’t quite ready to turn in. In fact, my sweet tooth was nagging at me, telling me to end my night with a treat. Unfortunately, my fridge and cupboards left me with nothing to be desired and I realized I’d have to go out in search of dessert. Luckily, I live in a great cosmopolitan area with many shops, restaurants, and a fantastic new gelato shop, all within a short walking distance. I grabbed my wallet, my keys, and my whistle (cosmopolitan as it may be, I never go out at night without my rape whistle, there’s no such thing as being too careful).
I walked the three blocks up to a gelato shop that I hadn’t yet visited, but had heard rave reviews about. Local and  homemade gelato in interesting flavors. Even at 10:15 on a Saturday night there was a line, and the shops tables were all filled with hungry people devouring waffle cones piled high with gelato, and hot espresso drinks. It was drizzling outside and I was praying that customers might leave by the time I had ordered so that I could sit inside with my dessert and not get wet.
Luckily, my wish came true, and once I was armed with a small cup of Earl Grey gelato (divine!!) I sat at a large square table where two other pairs were seated. To my right were two girls eating huge waffle cones and sharing what sounded like a very funny story about a mutual friend. They looked to be in their early 20s, maybe college students, and they smiled at me as I sat down, in between loud laughter and boisterous musings at their story. To my left were two other women, in their early 30’s, immaculately dressed to the nines in tight dresses and high high heels, full faces of makeup, and carefully done hair, sharing a kids cup of gelato. I smiled at them as I sat down, a courteous gesture since we were all sharing a space. I did not receive a smile back, if anything, it almost seemed like a look of distaste. Well, I’d be upset too if I had to share a tiny cup of gelato….
As I ate my gelato, and pinned on my Pinterest app on my phone, I became aware of their not-so-whispered conversation. It was loud in the shop, so the fact that they were attempting to whisper caught my attention I guess. Except I could hear them pretty clearly. They were talking about how embarrassing it must be for someone to be alone at this time of night. And how silly this person was for publicly announcing that they didn’t have friends or a date, by coming to a gelato shop on their own. I snorted at the stupidity of their conversation and looked around to see who they were insulting, and then realized it was me. They smirked at me with their painted lips and perfectly plucked eyebrows like how dare I be in their presence. And why insult me? Because I’m by myself? Since when is it a crime to get ice cream at night time? I was struck by their audacity to judge me when they didn’t even know me. And the entire premise was that I was alone. That I had no companion, and how “embarrassing” that must be for me.
I finished my gelato and got up to throw away my cup, aware of their eyes on me, their rude giggles following me out the door. I puzzled over it, the entire walk home, short as it was. Is this really what has become of society? The mocking of people on their own? And I know it had nothing to do with me personally. Those two women were just like many people that I know, who just cannot fathom doing things by themselves. In fact would prefer to stay home than be seen in public alone. And why? Why is that seen as an embarrassment? What is so wrong about being by yourself? Has this turned into the latest faux pas? Be alone and be ridiculed?

The whole scenario didn’t upset me. I won’t be put down by childish behavior and rudeness. It saddens me that there are people out there that feel joy by judging and ridiculing others. I feel sad for them. They only mock what they do not understand. What they can’t understand. Grabbing a cup of ice cream by myself at night isn’t a sign that I have no friends am alone in the world. It just means I wanted some ice creAm so I went and got some. End of story. I walk alone. And there’s nothing wrong with that.

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Thank you

Helpless

My hands.

They hurt. They hurt so bad. I knew it before I opened my eyes this morning. Stupid weather and stupid barometric pressure. Ruining my life.

It’s amazing what you use your hands for without realizing. You really take them for granted. Without them you would be helpless.

This morning I can’t grip anything because they hurt too much. And they hurt because my Rheumatologist is tapering my medications so I can get off them. This is the result. Overwhelming pain and the inability to do ANYTHING. So for all those people out there that feel the need to tell me on a daily basis that I would feel so much better if I just got off my meds… How about you spend a day in my shoes? Spend a day in my body. Then YOU can feel exactly what it feels like to stop taking your meds to “feel better”. You can understand what it feels like to not be able to straighten your arms because your elbows are too swollen and stuff. You can relish the feeling of not being able to hold your toothbrush because your fingers can’t grip the plastic and holding it to your mouth is too painful. Once you know what it feels like to be stuck on the toilet seat because it’s too painful to hold onto the wall or sink and pull yourself up, then we can have coffee and discuss war stories.

They hurt so bad.

10 minutes on the toilet (only 1 minute doing actual business), because that’s how long it takes me to maneuver standing again. 20 minute cold shower, the hot flashes are almost intolerable this morning, and I can’t squeeze shampoo out of the bottle without crying. 10 minutes trying to get my bra on, can’t wear a dress as usual today because they are all dirty and it’s too painful to carry my laundry basket downstairs and do the washing. Another 5 minutes buttoning my shorts because the only clean ones left are the three button fly ones that I absolutely have to wear a belt with. Ugh.

Can’t squeeze my toothpaste or hold my toothbrush properly. Shit. Guess mouthwash will just have to do this morning. Cupping water in my hands to rinse might as well be circus entertainment.

Gosh I’m hungry. So so hungry. Nausea last night stopped me from eating dinner. Plus when you feel like you’re sweating to death the last thing you want is to put food in your mouth. But now it’s a new day, and I’m hungry. But I can’t open my fridge. As soon as I make an attempt to pull the door open I scream out in pain. My wrists won’t take the weight. Ok so what food is in my cupboards… Tea? Nope can’t boil water. Coffee? Nope, I can’t lift my keurig down from the top of the fridge. Oatmeal? Can’t lift the pot from under the sink. A hearty breakfast of triscuits and Dijon? Nope. Guess I’ll skip breakfast today, again.

You don’t realize how much you use your hands. You don’t realize that without them, you are helpless.

I am helpless.