Disappear

Some days, that’s what I feel like doing.

Just taking off to places unknown. Where no one knows me. Where perhaps I could start over my life. Taking the fewest belongings and running.

But…

Every time I think of this, every time this desire to move or to run has come over me these days(especially these days, because earlier days I came really close to just running) I’ve come to the conclusion that whatever it is I’m trying to run away from is going to follow me.

I constantly want to move away from every town I’m in the last twenty years. I figure that if I keep going, if I find this so-called utopia that exists in the back of my mind all would be ok, my pain and my problems would all disappear.

Then I grew up. Or rather I figured it out. I’ve been trying to escape the pain for so long that I’ve thought that running would fix it. A change of place. New people. However, that doesn’t change that just maybe I’m still me. I have some friends. Some they come and go. I can’t seem to keep them for long. Or I keep them as if they were in the back of my pockets and only taken out when needed. Only it’s me that they don’t need.

I’m still the me with the same desires. The same fears. The same tragedies from the past holding me down mentally and often physically. I fall into bad patterns and can’t seem to crawl myself out from under them. For years I ignored them and figured it was just the pain seeping through and all I could do was push them aside, these patterns, try to find a way to muddle through. Be it through cigarettes and alcohol, or through one bad relationship after another.

Part of my reason for writing this is that I feel alone. Don’t we all. We all always feel alone. I have friends who have literally disappeared. Some I’ve grown apart from. Our ideals no longer match, and that’s hard to realize and accept. Others, they just decide they want nothing to do with you because you no longer fit what they need. You aren’t good enough perhaps. I don’t know. I try with others so often that I’ve come to the point of rejection that I’ve decided I won’t try anymore with anyone.

I had so many dreams growing up. The earliest of course being that I wanted to become a successful writer. After that, actress, forensic psychologist and salon owner fell into place one behind the other. The writing was part of me, it became ingrained in me from a young age when I taught myself how to read at a very young age out of determination and jealousy that my older siblings could go off to school and I couldn’t. From there, as my mother would recount, was when I fell in love with the written word. When even the smell of books would makes me happy. It still does to this day.

Books were my escape as a child and even now. When things become unbearable I know that I have different lives that aren’t mine to escape into. Both fiction and non-fiction.

To go back to where I started with this however, I’ve come to a point where I’ve realized that I can’t run away. I wish I could. I wish sometimes I could pack up my kids, my cats and dog, my husband and my many books, and just go. Anywhere.

I’ve yet to find a town that understands me. It could be turned around that I’ve given nowhere a chance.  I’ve given everywhere a chance. Everywhere just hasn’t given me a chance to be who I am.

I’m going to turn back to writing. I have a book I’ve been writing off and on for about two years. About a woman and her experiences with MS but, there’s a twist, a couple twists and it’s not what you’d expect. There have been few to no books or movies/shows that have dealt with MS and I think it’s time.

I need to refocus myself and finish this book. I’ve been afraid of it for so long because some of the tribulations the character goes through are what I have with MS. She’s me, but not me. There are parts of the book and characters that now looking upon them after all this time I think needs tweaking but for the most part, I like the direction the book has been going. I just need to get back to it.

I need to forget everyone who seems to have forgotten about me. That includes friends AND family.

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Easily Undone

glasses

 

This week has been a strange blur.

First, I’m dealing with the fact that I’m back here. Here. Writing. Trying to put myself out there. Even if it is just for me, or for the few who actually bother to read what I have to say. Still, I’m doing what I need to do.

This week has been strange. Emotional. Physical.

The holiday being in the middle of the week threw me, and my family, off. Nothing has been normal. Add the full moon tonight, a power which I strongly believe in, and my energy and my output and emotions have been thrown all over the place.

Let me start with this: With the longtime MS I’ve had physical limitations. And over the last two years they’ve been more intense than usual, partially due to my mental/emotional issues/responses to the MS. My anxiety and depression being so deadening I found myself spending a good part of the year curled into a ball in bed or on the couch when the youngest was at school. I lost a good portion of who I was. This year was my worst. It was late spring when I slowly, but surely started to climb out of this. I’m still climbing. And this summer, knowing that summer is usually my roughest time of year, I’m actually doing fairly well, considering.

Anyways, with these issues, I gained weight. My legs became weaker. My legs have always been a huge issue with my MS. They were one of the first indications I had MS. Years before I was officially diagnosed. Sometimes they feel like dead weights. But late spring I forced myself to get up and start walking. I would push myself till I could start walking to meet the kid at school a few blocks away. While to most of you out there, you’re thinking “I can do this any day”. For those of us with decades of a neurological illness that affects every aspect of your daily being, your daily movement, to fall into this type of trap and eventual ability to crawl out of it, is monumental.

As I said in my initial “I’m Back”, there is a lot I could go into regarding the hell I’ve been through with the MS the last couple of years, but I’m not going to drop it all here and now.

The weight gain isn’t huge, but for me it is. I’m not who I remember, yet at the same time I’ve come to love myself a lot more now, in my nearly late 40’s, than I ever did in my 20’s or 30’s. I’ve come to understand that my body has its moments, its limitations, and it’s still worth being here. I have a spouse who loves me. Who doesn’t mind that I’m not perfect. I’m not a waif. I was, back in my 20’s and early 30’s when I was post divorce and smoked my brains out.

When I was a size 2/4/6 I pushed myself hard. I was a smoker. I smoked because it was for the most part, what I was taught was the way to keep my weight down. It’s been 12 years now. Since I quit. I don’t talk about this often. I’ve had my few moments where I’ve had one in serious times of stress. Every couple of years. There was the time 11 got her head stuck in the railing(age 4) and the fire department had to pry her out. The time my AC died and we were fairly broke at the time and it cost and arm and a leg. And I had to take the kids to my mother’s. My brother was there and he handed me one on the porch and I didn’t blink. I knew better and felt worse the next day.

May I add that I took myself to the immediate care this week to rule out a blood clot in my leg due to serious pain? I knew I was being dramatic. That the pain was me and the new workout routine aggravating a former muscle tear. After two hours and an ultrasound, I was right. But it was worth the peace of mind. Also, never Google leg pain. Ever.

Also, late night fights with glasses are rough. The winner is usually undetermined. Especially when the amount of wine drunk is a catalyst.

 

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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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The Simple Story

I’m back. For now.

The last three years has been eventful and at times, not so much.

It’s been equal parts exploration and misery.

The MS hit a point that it’s never hit before and it caused me to stop driving. Period. Nothing. Nada. Nope. 18 months ago.

I’m still on the precipice of starting over. Only in the last two months have I tried. It’s been…ok.

Much of this was caused by a severe uptick in anxiety. Most of it due to my MS. My vision issues bite.  Primarily social anxiety.

I’ve always dealt with not always fitting in with others, though usually I would find those who stood on the outside, just on the very outside, just like me, that I could be friends with. This town however, it broke me. It broke someone like me. It’s good at breaking people because of who you have to be on a regular basis, but I could never and will nor want to, fit in. Therefore, I’ve been a prime target by other parents.

There it is. Parenting is a bitch when you aren’t custom made, custom ordered. When you don’t try to be everything for everyone else. And you god forbid, have tattoos and fight against the normal. Listen to music that can’t be found in the top 50, and understand the ways of others that think outside the box, who might deal with feelings in ways unorthodox to you.  In a town so dead set on being normal that if your daughter doesn’t wear the right brand of underwear she’s an outcast.

I won’t abide by this. I never thought I would. I grew up in a town similar to this. It’s where I lost myself. Where I realized I would never be what my family wanted me to be. Despite the traumas I experienced that I never asked for. Not that anyone ever asks for any traumas.  This I’ll go into as time goes on.

I’ve chosen to keep this off social media this time around. I’m not looking for the hits. I just need the output, the ability to write my feelings out. I had to start seeing a therapist on a regular basis this past year and she’s finally sussed out that my problems with feeling dead inside sometimes has to do with my family and especially what I dealt with growing up in the town I did. The abuse I experienced emotionally and mentally from family and friends. From expectations. Why the past year I’ve kept a serious distance from most of my family.

I know this is the most depressing “Hello” you might read, however this is what it is. I promise, it won’t always be this dark, but for me, some days it will be.

 

 

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The Awakening

A couple of days after my last post I found myself in the Emergency Room.

It was something I wasn’t expecting at all. Despite what I had written about a few days before, things had been relatively stable.

It was monday morning. I took 8 to school. I was in a good mood, a productive one. I took my iPad and phone up to my bed. I was sitting there making long needed appointments for the family. My cats were curled up near me. I was on hold with one doctor’s office. Suddenly something came over me. It was like a “whoosh” feeling that began from my head and went down to my toes. I couldn’t explain it then, I can’t explain it now.

As that happened I suddenly fell over to the left. My whole body just tilted over. The tremors began. I grabbed the side of the bed to keep myself steady. I was aware of what was going on, but I was terrified. My eyes wanted to close. I struggled to keep them open, and my head up. I was dizzy. Just trying to grab my phone to find someone, anyone, felt impossible. I cried. I tried calling my friend Jess. No answer. Then my mom. No answer. My husband. No answer. I managed to text my brother who would know where our mother was. Told him it was an emergency. He called me back. I explained what was happening. He told me she was out of town for a day. Something about Galena. Ok.

I told him I think it’s a seizure. Not sure. I’ve had this happen before the last couple of months. A couple of times. Not sure why or what they were.

Jess finds me first. She says she can be there in a half hour, she’s out. I call the doctor, talk to the nurse. She tells me she will not hang up until my friend gets there. We have a 30 minute conversation. In that time, I finally stop tremoring enough to lift my head. To walk downstairs. Husband calls and he immediately leaves work. Jess arrives.

The nurse told me to go to immediate care which I didn’t think twice about, but now disturbs me because with their limited ability to treat me whether it was a seizure or my MS, why would she not tell me to go to the ER? Because I went to the immediate care. They couldn’t do anything for me and within 45 minutes they sent me to the hospital. Where I spent the next five hours.

Tests. Tests after tests. The focus for some odd reason was on my chest. At one point the technician came to get me for a chest x-ray. Now here’s me, in a hospital bed, thinking either I had a seizure(as I had epilepsy as a child) or it was a rather odd & wicked MS exacerbation, and someone wants to take a picture of my chest? It made no sense. And as someone who has spent the majority of their whole life in and out of hospitals, I questioned it.

Later it turned out my blood tests showed mild clotting, which they then told me was also common in those of us with MS & other immune disorders. So then I spent nearly 2 hours taking in radioactive fumes via mouth to light up my lungs to check for a blood clot. Which was, surprise! Negative. I could have told them that and saved my insurance a lot of money.

I was discharged and told not to drive till I saw my neuro later that week. And when I saw her, she told me she didn’t think it was a seizure. Despite my mother sitting there saying that she dealt with my seizures for nearly 2 decades and my descriptions of what was happening was damn similar. The Neuro’s reasoning was that I wasn’t unconscious.

I have no words. So angry. I think I’ve read more about my type of seizures over the last 44 years(I developed them age 1, they slowed down by 20 with only two in my twenties that we know of) than she has. I recounted this whole visit to my father that day. And he said the same, ” you were NEVER unconscious during your seizures”. I knew this. They weren’t the typical. I lost faith in my Neuro that day.

We’re still not sure what’s going on. I’m noticing a pattern. I thought they were panic attacks. But I don’t think so anymore. It’s something else. The Neuro wants to think it’s a combination of MS and hormonal.

Whatever it is it threw a monkey wrench into my life this week making me feel as if I couldn’t even take care of my own family. My friends were amazing and I owe them everything. They took care of 8, picking her up and driving her everywhere when I was unable to drive. I don’t like asking anyone for anything so this was hard for me.

Next weekend I restart the Tecfidera. My mother told me after the Neuro’s appointment “You put everything off, to take care of everyone else. But now you’re seeing the end result. You’re actually getting sick. They need you here to take care of them, so it’s time. Take the meds, or you won’t be here for them “.

I’ve gone this long. Nearly 25 years with minimal medication. I’ve defeated so many odds according to the doctors over the years. But I’m no longer invincible, I’m not the superhero I thought I was.

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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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