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Hello, It’s Me

This is just a brief hello. A hey, I've been away for three weeks and I'm sorry.

I was on vacation. With my husband's family. Out East. For ten days. It was interesting. It was a wonderful trip, don't get me wrong. It's just stressful to be with 9 other people in one house for a long period of time. Especially when you're introvert personified.

I have so much to say. So much to tell you. Both of my kids have had birthdays. One is a year shy of 21. One heading into Junior High in two weeks. I've had a lot of personal breakthroughs the last two or so weeks. Some of which I can't explain. They've just happened.

I saw and experienced things. Let myself try to be happy when I was out east. We were in Maine for a week and apparently Maine agrees with me. I'd never been there before until last week.

Last night I had the chance to finally, FINALLY, see one of my absolute favorite singer/artists ever. A long story short: Nearly 17 years of trying to get tickets to his shows has resulted with each and every one sold out within minutes. Some I couldn't attempt due to oh, maybe childbirth. But hey, this time I lucked out and it was one of those times my husband said "Get them, we'll figure out who takes the kid later" situations. And that day, I lucked out. Last night I saw him. He closed with my favorite song in the world. The one song that turns me into a weeping, freaking mess. The spouse turned to me when it started and said "You're so happy, aren't you?" I was. It made my freaking world last night.

The story I've been working on for two years. The one I've come back to off and on, that upsets me, I based the main male character on a combination of a couple different artists I've admired. He's one of them. Last night made me realize I need to rewrite some things. Though this has been a suspicion for a while now. There are parts I'm no longer comfortable with. At times I want to scrap the whole damn thing and rewrite it. It frightens me because I have about 20K words written. Maybe more. Again, I've been trying to work on research for another project so I've forsaken this one. Though, personally, it means more to me. Which maybe, is why I don't give it more of my time.

It frightens me. It's too close to me.

I'm going to stop here. It's been a long couple weeks. Especially a long two days and I need sleep. I just didn't want to keep this page so quiet.

I'll explain the rest in the next few days.

Goodnight.

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What I meant to Say

(This is what I tried to post last night but unbeknownst to me I accidentally created another version of this blog and posted it there. The moonlight does some strange things to my brain)

When I was younger, when I was just past 12. My parents had just officially, truly separated.

My father had taken us on this yearly trip to Elkhart lake in Wisconsin. Just a couple hours or so north of where we lived in these suburbs of Chicago.

This was before he met my stepmother, whom he’s been married to for about oh maybe 3o some years.

It was me, my sister, often our younger brother and mostly my sister’s and my best friends.

I lost T’s earrings at this resort one year. T was my longtime best friend through childhood. Most of it. She went everywhere with my family post this time. . This resort was something I loved and lived for every summer. It was my nearly 12th year when I was introduced to Rickie Lee Jones via my dad’s cassette tapes. I was too young to supposedly understand but yet, no, no I wasn’t. Subtlety wasn’t a strong suit for me.

I understood so much due to what I had read. I read books and subjects that would curl the toes of most parents nowadays. Which often makes me laugh considering that we’re parenting the same age group, and that we’re restricting our children from knowing about things that we know even before they did. Why are we so scared? There’s no good reason. Just fear.

Back to Rickie. She became my everything that summer. And for years beyond. There were times when I would find myself upon a stool inside my dad’s house, with rum & coke in one hand and cigarette in the other, alone I’d sing along to her songs trying to rectify the pain I’d dealt with the last several years. This was my coping mechanism.

Years later, especially realizing the pain that Rickie had dealt with in regard to her own issues, I had to try not to idealize her pain and romanticize it.

She was my biggest influence growing up, I didn’t want to use her music as an excuse to hurt myself. I don’t think that’s something she would want. Instead as I grew up I found the ways to listen to it as I should have all along, as an admirer of the craft. The creation itself, not the artist’s own pain behind the scenes.

She was the first of a small handful of artists that over the years would come to mean the world to me. Whose music I could put on and find myself climbing out of the depths of pain surrounding me, or who could bring to me a sense of solace that everything in this great big world finally makes sense.

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Where Is my Mind

I’m here, I’m there. I’m everywhere.

Influences far and abroad have brought me to who I am. I try to come to some sort of rectification as to who and what I am.

There are artists who have brought me to these points there are also situations that I have tried to explain away and though that in this world I grew up within there is no out. There is no explanation. You just exist as they taught you to.

Only, I refused to do such that.

I found my solace in artists like Rickie Lee Jones. Whom my father inadvertently introduced me to when I was 12. I was TWELVE. However between Rickie and Todd Rundgren , and the artist such as Queen and so many others I grew up within the 70’s/ 80’s  I found a way to survive.

There’s so much I could elaborate on, but I’m tired. I’m angry. I was asked tonight why I don’t talk to a certain sibling and I couldn’t explain this without shrugging. Shrugging with little conviction.

I want to love them. I of course do, but they’ve hurt me, they’ve hurt themselves. And here, I quit.

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Breathe Me

I’ve been dealing with the every day pain in stride. The panic attacks are still there, however I’ve started to chart them and I’ve noticed there’s a pattern as to when they occur. And it’s not often. I’ve developed techniques to keep them at bay. It’s a lot of work, dealing with this illness.

I haven’t been to the Doctor in a while. Partially because I don’t know what she can say or do for me at this point. I know where I am, what I’m dealing with. I know what I have to do.

In a couple of weeks I’m going to restart the oral med Tecfidera. Too much has been going on to have started it again. From 17 losing his grandfather & his emotional fallout, to my own depression/panic attacks that had left me feeling as if I could barely leave the house most of summer and the panic attacks that would ensue when I would drive. Thankfully these I have under control. I’ve got it. I think I do, at least.

However, my eyesight is messy. I’ve been putting off scheduling the appointment to find out why the blurry spots are showing up. I know what it is. They told me as much a few months ago. Optic Neuritis.

The lawyer handling my disability case has disappeared. Somewhat. His secretary told me two months ago that the appeal takes a very long time. Well, no contact in two months is too much of a long time. This week I’ll make the effort to contact them.

Oh but hey, the confession. I was going to get to that point.

This past weekend was my 25th HS reunion. I didn’t go. One major reason was that it was the same night as my husband’s birthday. I know him, and I know that he wouldn’t have wanted to spend his night making small talk with people he didn’t know.

Another? I don’t remember a lot of people. And not for the reason you may think.

This is the part that kills me. What so many don’t realize and understand that comes with having MS. Our memory fades in odd ways. For me, there are people that stand out. Those I had the most contact with. Most of these people are those I went to grade school and junior high with. My memories about them remain strong.

If it comes to those who I had just met in High School, I have less of a chance of remembering who they are/were. Some I remember well. Others I know the faces, or perhaps, just the names. It’s frustrating and confusing. I remember bits and pieces.

And after what happened to me at our 20th I couldn’t put myself through it again.

During my freshman year I had the typical experience. That which you learn where you stand. By sophomore year I hung out mostly with the class ahead of me. I knew many in my class, and by junior year I met a few people who I still adore to this day, a couple of which are my best friends to this day. However, I never felt as if I belonged. And trying to go into this reunion at a time when I’m not at a physically strong point seemed like the wrong thing to do. I didn’t want to let myself down.

This is the hard and sad part of having this illness. Little things that we all take for granted, that we expect every day that we go on, they come at a price for some of us. It’s come at a price for me. I wish I could have gone to my reunion, however the chance that I could put face and name together with so many would have been daunting.

My accomplishments the last few years have been few to inferior compared to theirs. I’ve lived within dealing with this illness and trying to raise my children, handling the day to day, that I don’t expect much more. I try to write. I try to be.

I just won’t be who I thought I’d be nearly 30 years ago. And I just won’t try anymore.

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Where you Belong

Humbling.

Frightening. Thought provoking. Terrifying. Laughter. Tears.

These are the thoughts, the emotions that I felt while finally finishing the documentary When I Walk by Jason DaSilva. We started this two months ago when it first aired. Me being myself and my husband J. A small part of me didn’t want him to watch this. I knew how difficult it was going to be for him to see it. Another part of me wanted him to understand what I felt day after day, even though Jason’s diagnosis & experiences were more severe than what I’ve dealt with over the 20 something years of my diagnosis.

It was too much for me at the time. There was so much more going on. So I set it aside.

It was time to finish it. I knew it would be painful to watch. I wanted to reach into the screen and hug both Jason AND Alice. Alice stood out for me for her selflessness, for her deep devotion to him even though he was already deep into the physical and mental symptoms that MS can cause. Sure, she was already familiar with it to an extent because of her mother, but she then went and fell in love with this man who was PPMS which is the extreme on the MS stratosphere and she stood by him. She loved him, took care of him in his darkest times. She married him and lived her life. I worried briefly while watching the documentary that people/caregivers of those with MS would come down upon her for at one time need to be free, to go do what she needed to do, what she had done so often before being with him. I turned to J and told him ” I’m not mad, I understand her. This is why I give you your freedom to do what you need to do. I won’t hold you back”.

It’s painful for those of us with these illnesses that have little hope of improving. Me? I’ve been RRMS since 94(officially) but I had symptoms for nearly 4-5 years before this diagnosis. It’s 20 years officially in a few weeks since I was diagnosed. I always speak of it to others as the date when the symptoms first appeared. It feels right because it’s so hard to diagnose. Or in my case, I had no insurance so I suffered until I was able to finally see doctors without being charged an arm and a leg. Which sounds funny, because now that’s precisely some of the body parts I’ve lost along the way with this illness. Not literally. They’re just hard to move some days.

It’s not formal but I’m fairly certain I’ve entered that stratosphere of SPMS, which is the gradual progression of RRMS. My doctor marveled for so long over how far I had come, especially since I was one of those skeptics who wouldn’t take the medications and who took them very briefly over intervals throughout the years. The side effects hit me so hard I couldn’t function.

Granted after 20+ years I’ve had some serious setbacks. Some physical, now some emotional as the MS does take a toll on you mentally after a while. For me it’s panic attacks. I’m afraid of driving and the circle around me has shrunk. It upsets me on a daily basis since some days when I get in my car to go to the grocery store I’m not sure if it’s going to hit me. I can travel to my daughter’s school and the immediate neighborhood with no problem. But some roads provoke the issues.

I’m exhausted all the time. I hate going up and down stairs. I’m afraid to go running or exercise because my legs feel so weak afterwards. I can’t do a lot during the summer with my kids because the heat becomes unbearable. My vision has become horrible. And like the driving, I have good days and bad days with it.

I’m not going to lie, so many times over the years, especially the last two, I’ve given my husband the option of leaving. I don’t want him to deal with me like this. I don’t want him to be subject to my bad memory, my irritability, or ability to not want to get off the couch for a few days when the heat is unbearable. I feel like a failure during these times. He however, has told me he’s not going anywhere. Some days I’m happy when he says this, there are others I feel guilty. Because I feel he deserves better.

Yet, isn’t that what we who have disabilities, illnesses think and feel often? We have to get past it somehow with our self-esteem already taking this hit, we have to find a way to still love ourselves. I try. I really try. I miss writing. I don’t do it as often and when I don’t it takes me a while to realize how much I’m suffering. But my mind works slower, my thoughts are many, my fingers can’t keep up.

For me, this documentary opened up a lot within me. I’d been avoiding the meds for so long. Rather I’ve had horrible experiences with them and though I’ve had the new drug sitting in my cabinet for three months I’ve yet found the right time to re-start it. The tecfidera.

We decided after watching this documentary tonight that I start October 1st. Especially since I’ll be on the lowest dose possible for a long time. I can’t put this off anymore. I can’t get in my car. My eyes are failing me. The other day as I was sitting here my left thumb started convulsing. Not to mention I just may be having seizures again, of which I had on a regular basis from the time I was a year old until my late teens. There are little signs, signs I’ve called my mother with often trying to figure out if that’s what’s going on.

Lately I’ve felt like the neurological enigma.

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Damage Control

A new day, a new month.

Last month saw loss. Grief. Instability and anger.

My son has been going through the stages of grief at rapid pace, up and down, day to day. Trying to be patient and let him deal with them as they come. This was the worst thing he’s ever had to go through. The first loss. And one so close, one so painful. His grief has been tearing me up because I’m trying to help but there are days I’m not sure if I’m being too easy-going or too tough. I see his dad dealing with it better then he is.

He may be turning 17 in a month, but with his Aspergers he isn’t always able to deal with his emotions the same way someone without it might. Not to mention that he’s also hypersensitive. Something he comes by naturally courtesy of his mother.

I know he fell short with his classes and his finals the last four weeks. I expected nothing more. His father didn’t either. Which makes it complicated because we know that some of his grades are probably not going to be as good as we had hoped, and the two classes he was suffering with the most may possibly result in failing grades(one class it’s been discussed already with the teacher that if it happens he’ll retake it next year). How are you supposed to approach a situation like this when the child’s experienced a hellacious loss within weeks of finals, when they already deal with depression?

I’ll tell you.

You cut them a break. You have to. For their own emotional health and growth and for your own.

Sometimes coming down hard & giving them consequences during really hard times does nothing but compound a situation and possibly propels the child into further depression/anxiety/doubt about their ability and self-worth.

Being a teenager sucks. Add divorce, alienation by peers, bullying, loss, grief, self-doubt, and the never-ending stream of impossibilities set upon the teens of today by the media blasts(social in specific) and it’s complex to try to raise a well-rounded teenager without any issues at all. If you have, I congratulate you, you got lucky. Really lucky, because I’ve yet to come across more than a few without the above.

I grew up in the early-mid 80’s. Or rather I was a teen during those times. My parents divorced when I was 11, my Junior High & HS years were awful off and on. However I found my way, I had my books. I had my writing. I had the theater(secret: I was in plays). Sure, I didn’t always like how I looked but I look back on those pictures and laugh now. I appreciate myself as a teenager now as a 40 something more than I could ever before. I didn’t have facebook, twitter and instagram telling me I was ugly or dressed wrong. I was punk rock. In High School my go to by junior year was a leather jacket and ripped stockings, and knee high black boots. I found solace with the other kids who didn’t feel as if they fit in, but at times we didn’t even always fit in with each other. However it worked. And I forgot my pains.

Sometimes I feel it’s kids like my son, those who straddle that in between, of feeling as if they don’t fit in anywhere and wanting to fit in everywhere that have it the worst. I want people to love him the way that I do, who understand him the way that I do. I want him to find his way eventually. Next fall he’s a junior and while he has friends in school and a couple of kids he texts without outside of, I want him to find out who HE is. He has to.

Because he’s worth it. Because he needs to be someone. He already is someone but he has to believe in himself. And for now the only way to help him in this is to let go a little of my expectations and let him develop his own.

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The Last Goodbye

For years you know people, you meet them and some of them make a mark upon you that you can’t explain.

Sometimes you grow apart, which is only natural. However, they’re still there in your life one way or another and what you felt about them is not something you can easily let go of.

The past three years my son’s grandfather fought a very valiant fight against cancer. He was strong and endured the chemo, everything the doctors threw at him. He was 6’4 and strong. However over time he weakened and parts of his jaw and body suffered along the way.

He kept going, and going.

I know many never understand this, but my son’s father and I never hated each other. It was quite the opposite. In the 13 years we’ve been divorced we’ve always been there for each other. Sure we both remarried the same year and had kids a short time later with those spouses, but we stayed friends. At one point we both lived less than two blocks from one another. We did this for our kid. His wife and I would babysit for the other’s kids. His wife and I would go to movies together. We liked each other. It was just natural.

Eventually we moved further away from them, yet closer to where 16’s father grew up. Where 16’s grandparents lived & where his father worked. Weekends and weeknights worked. Over the years from the time he was a baby we spent so much time with the ex’s parents that our son saw his grandfather as a second father. Every tuesday night he would spend the night there with his dad.

Then.

The day came several weeks ago when B’s wife called me to tell me how they didn’t think it was long. My ex FIL was in hospice.At home, but still.

Four weeks later upon picking up 16 for the night B took me outside to talk. He told me it was maybe a week. Maybe two. It was that severe. After he left I poured a glass of wine and cried. For his father. A great guy who loved my son. Who always treated me well all these years. For my son, who adored his grandfather something fierce.

A few days later they brought all of the family members in from Wisconsin. They said their last goodbyes. This was a close family. My son was so torn up his stepmother brought him back to me that night.

Days later I knew it was coming. His dad and grandmother didn’t want him there. But I pushed. His stepmother and I both knew it was either he said goodbye that day or else. We were right. His step-mother pushed. He went over and spent an hour. We took him with us to a baseball game.

Four hours later the call came. He was gone.

He’s been up and down for the last two weeks. The memorial service was hard. My ex FIL was one of those men that you can’t help but adore. My mom was there, my dad & stepmom were there. One of my brothers attended with me. Not a dry eye was within the house. He really was someone that changed people’s lives.

Last minute I was invited to the luncheon and it was awkward. I didn’t belong there. But I will say that the reception and love I felt from B’s cousins who once upon a time all those years ago while married, was overwhelming. They hugged me and cried with me.

I’m not good with the death of others. I experienced this with my grandparents but I couldn’t deal. This time because I had to be so strong for my own child who was dealing with it for the first time I felt a strength I never felt before.

There have been days he talks to me about how his stomach hurts. He will suddenly curl up next to me and cry. I’m trying.

He’s trying. I want to be the best parent for him I can be.

And I wish that sometimes we didn’t have to say goodbye.

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