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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Here it Goes

The last few months have been eventful.

Or rather at the same time, not enough.

Not enough to write about.

I’ve preferred to keep them close to the chest. Too much pain and confusion. Too much hurt.

See, I’ve been going through the worst depression of my life. Yet, I’ve done little to deal with it.

By now most people would have been to see a doctor and had a prescription given to them I’m wary. While I know that some work and they certainly work for my son to a certain degree, I am also acutely aware of how I want to feel and after all these years of feeling pain & confusion I’m not ready to rid myself of those emotions.

I’ve preferred to spend the last few months drowning, but coping. Helping my kids deal with whatever they were going through at school academically and with their peers. Just trying to be there for my husband through very exhausting and stressful times at work.

Yet…

There has been the usual.

Of course.

My health issues are always here. They’ll never go away and sometimes they’ll get worse. And lately that’s been the case.

I do try to pretend they don’t exist. Hell this is what I’ve done for nearly two decades. Pretend they’re not here. However lately things have been an absolute mess and I know that they’re the reason for the increase in the depression/anxiety issues.

I could start with the disability filing.It’s exhausting. What you’re subjected to. How to explain to a psychologist in a very short amount of time how angry and miserable you are. And really, you don’t get that much of time to explain this.You don’t get to explain that you have decent days. However those good days are fleeting and you have several hours within those days without issue. But most of those days you’re so petrified of driving because your sight is a mess, and because well, you can’t explain why but you’re driving home from the grocery store & your chest constricts. And the next thing you know you’re gripping your steering wheel, you notice that your feet are tingling, your eyes want to close, you feel as if you can’t breathe.

And nothing you do can change this. You try to change the station on the radio, or you turn it off.

Silence often helps.

This is a panic/anxiety attack. This is what happens when after 20 + years of MS you’re terrified to get behind the wheel. When there are only certain roads you can drive without the fear and bile rising within your throat due the fact that when you took them before you had flares.

This is life with MS.

Or rather…this is just a snapshot. This is a snapshot of my life. My life which used to seem so easy. Which has become so complex that I’m afraid to drive outside of my comfort zone that consists of the several blocks around my house. This is where things get so painful.

Imagine trying to leave your house to run a simple errand only you just can’t. It’s near impossible without that strange feeling beginning in your throat and your chest. Lately hitting red lights sends me into an absolute panic. There are certain main roads around here where when at a red light you’re on an incline. Because of this I’ve figured out ways to get around them & take short cuts. Just to avoid being stuck in that position. Again, this is just a snapshot.

And why the denial for disability was so heartbreaking. I was thankful however when my attorney’s office explained that an initial denial was almost the normal & that we had to appeal. Just last week I filled out those papers and sent them in. Next week I meet with a psychiatrist for the first time. I’m at the point where I need to do something to relieve the fears & anxiety that have been such a huge part of who I’ve been lately. Or rather, a detrimental part.

During all this I was fighting with the insurance & the pharmacy regarding the dosage issue with my Tecfidera. In case you don’t remember, I was on it for a short while last summer. Then I had the side effects that no one was supposed to have. Or rather, just the small minority. As my neurologist has now realized, if it’s a minor side effect I’m going to have it. Such as my colon going into distress after a couple of days on the high dosage. I’ve been off for nearly a year. It took this long to get us to agree I need to be on SOMETHING. I no longer have a choice. My once extremely passive MS has suddenly decided it wants to torture me. Which also makes me want to kick myself many times for not fulfilling many life dreams ahead of time. I’m working on trying to get things accomplished before the MS decides to go even more ballistic.

To make a long(sorry, VERY long) story short, after several months of insurance fighting the prescription being lowered to just one 120 a day(which is minimal) to give me a chance to adjust, they finally gave in two weeks ago. To say this argument was draining would be an understatement. It was a good deal of my depression the last few months. I spent at least an hour a day on the phone daily for 4 months with insurance or my doctor’s office. Who knew going on a lower dose would be so trying.

Deep breathes.

Ok, so we’re here. It’s all done. Just need to continue with the disability hurdle.

There have been other things going on, but I refuse to make this “the most depressing blog post ever”.

I’ll save it for a couple of days from now. At least that will bring my average of posting up from every few months to every few days.

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Greetings & Salutations

It’s been a while. It’s a New Year.

I disappeared. I had to.

Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.

Last I wrote I talked of some health issues.

They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-

I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.

- 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.

- His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.

-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.

Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.

Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.

I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.

After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.

-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.

Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.

- I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.

Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.

Another day…Another Time.

For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.

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Human on The Inside

I couldn’t write.

I would sit down and try to create something and then suddenly…my fingers stopped. My brain stopped. Whatever I was writing just didn’t make sense.

This happened several times over the last two months. I would sit in front of the computer, or my ipad, and try to come up with something witty, funny, interesting. I would go to work. It would work for maybe about five lines and suddenly, there was nothing.

The last two months have been an up and down of emotions and experiences that I suppose I couldn’t write about them. My views, my ideas, what I wanted to say changed every other day. Sometime they lasted several days. Some emotions lasted longer than I wanted them to.

September was evil. Sure it included our birthdays(mine & the husband’s- a day apart much to the joy of our daughter). However it also included one of the worst depressions or funks I had ever sunk into in history. I can’t even explain WHY it happened. The kids were back in school and usually at this time of year my energy level surges. The opposite of what it usually does in summer. However, I just couldn’t move. Day after day I would take 7 to school and I would come home and just sit on the couch. Usually reading. Or catching up on something I wanted to watch( I became extremely addicted to the show Haven via Netflix. All I have to say is WHY didn’t I start this show earlier!!).

I didn’t want to leave the house. Or shower( I did, I just didn’t want to). I did still manage to pay the bills, grocery shop, help my children with their homework or whatever emotional upheavals they were going through. Nothing here suffered.

Only me. I couldn’t recognize who I was and I pushed everyone away.

The prior months saw the beginning of what has now become my biggest downfall.

A few months ago I wrote about the issues with my eyes. The accident. My fears. My attempts with the medication.

I’ve never been able to talk about my health issues until the last couple of years. For years I swept them under the rug. In fact I pretended they didn’t exist. Yet, now they’re showing their marks in ways that I can no longer ignore them. And for me that’s been heartbreaking. It makes you feel like less then a person when what ails you defines you.

I’m fighting this in more ways then you can imagine.

The pain and exhaustion have kicked in.

The sleeplessness.

The anger. The depression. The anxiety. The feeling of “what did I do to deserve this?”. It’s a constant cycle of wondering.

My eyes aren’t getting better. In fact the other day I may have made a breakthrough into what I think is going on with them. I should know better to self-diagnose but in this case I think I really did nail it. All I know is that when I’m tired or upset my eyes shut down. The muscles droop, they shut down, I get spots and I can neither see nor move. Let alone drive.

And it all came to a denouement with a visit to an attorney.

See, this is hard to admit, no one wants to admit this. Because it makes you feel so much less as a person. Especially an intelligent one. But, my cognitive functions are slipping rapidly. I’ve been noticing it for a while but lately it’s becoming so pronounced I’m scared. And angry. And I cry a whole hell of a lot.

I was the reader. The early reader. The kid who managed to teach themselves how to read when they were 3 because they were jealous their siblings were going to school. I won spelling bees all through elementary school & even junior high. Well second place, I was in sixth grade and the winner was in seventh grade. We beat the eighth graders. So that was a big deal. My reading skills were always several grades ahead of where they should be because I was addicted to words. I still am.

However, with these issues they don’t make sense as they used to. Imagine reading a book and instead of being able to fly through it in a few days it takes you weeks. Why? Because your brain can’t compute the words. You can’t understand, you re-read the same sentences over and over. In fact really intense literature(something you once enjoyed) is no longer something you can handle. It literally makes your brain hurt. You keep trying though. And when you can’t, you feel like a failure. And you cry.

This has been my life the past year. Especially the past few months.

Writing? No. So many thoughts and ideas that should have been given a chance lay deep within my mind. I wish I could continue but I fear the worst.

My dream as a child? To be a writer. It has never left me. This is where I gave it that shot.

I have so many half-written stories it’s ridiculous.

Recently I found a book of poems. Poems that I had written in high school. Some were honestly pretty damn good. Dark, but good. I realized I’ve always been that girl, just in so many different incarnations based on where I should be and what society wanted me to be.

Back to the eyes.

I don’t think they’ll ever be the same. I have days where they droop on one end. Or one sees spots or double vision. It happens whenever I’m upset or stressed, or fatigued. It terrifies me. My biggest fear about this illness coming true. I’ve always been afraid of losing my sight. And with this, I don’t know how soon it may truly happen. And there’s no way of telling people, people close to me- that one day I may not see them. That I may not see my husband or especially my children.

It’s been so many years. I know I’ve been lucky according to the doctor. Symptoms including diagnosis it’s been 23 years before the progression. But at this point I wish it had been the lack of usage of a hand or foot. Not my eyes.

I’m in the midst of fighting for disability. People can look at this and say “well she can write”. Sure, however it’s taken me 2 months to do so. And I’m sad and angry about it. I can’t be who or what I was before these last few months. Life is no longer what it seems to be.

I don’t have any great message in all of this.

I just know that I’m trying to get through this the best I can.

And hopefully once I can get past the next few months of recouping medical records(of which there are many) and dealing with my normal day to day, I can get back to writing.

In a few weeks after some dastardly dental issues are taken care of I should be back on the low dose of the Tecfidera. For a VERY long time.

Until then…my opinions are many. And will resurface hopefully in some way or another here some day.

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When it Began

This is the beginning. I mentioned a book I was writing my last post. There are two. One is fiction. One is memoir.

This is the first chapter of the memoir. It’s a little rough, so please forgive me. But I like it. Especially the first half.

————————–
September 25th, 1970

A small, screaming baby arrived as fast as she possibly could. There was no waiting, no intense pushing. She wanted the hell out.

It was nine months to the day of Christmas Day. In which the story told is that that this baby was conceived that night by her parents who were under an immense amount of strain and wine. Their 3 yr old daughter had been sick with a virus and the concern was beyond overwhelming. That night they created this shiny and fast moving human being.

This was me.

My mother always told me that I arrived in a hurry. I had places to go and people to see. That the Doctor had to keep me from falling off the birthing table I was in such a hurry.

I was the third child born to Dorothy and Richard. They were childhood sweethearts on the south side of Chicago. He was four years older than her yet they had known each other for most of their lives, Richard had even briefly dated Dorothy’s older sister Mary.

Dorothy was dark Irish with shining eyes and the hopes of one day becoming a veterinarian. She and Dick had become engaged when she was 15. He was just graduating high school and hoping to go on to a career in business. She lived with her parents and younger sister in their small bungalow. By this time her older sisters Patty and Mary had married. As had her older brother James. Her and Jimmy were the ones that shared the closest genetics. They took after their father’s French/Irish side while their fair haired/ blue eyed sisters all took after their German mother. Their father was a policeman who eventually went on to own a very popular tavern on the south side called Flaherty’s. The mascot of the bar was a 6 foot snake that often slept in the basement of their home.

Dick in the meantime grew up from her just a few blocks over. His father was a fireman who passed away two years before I was born.

Upon my birth there seemed to be a problem with coming up with a name for me. My grandmother Dorothy(my maternal grandmother) wanted to name me Susan. My mother wanted to name me Jennifer and my father wanted to name Winifred. Now considering this was 1970 both Jennifer and Susan were crazy, popular names. My mother won this war.

Looking back I would have taken my father’s choice just due to the fact that now I could have at least had an inventive nickname.

Trying to give me a first name proved so exhausting for my parents that they skipped over that whole middle name thing.

Which at the time was fine, for a defining moment in my life came when I was 13 and watching the Live Aid concert in my father’s living room, I turned to him and decided that my middle name was to be Cristiane. The French version of Christine. At that time my parents were telling me that I could decide on my own middle name, as I truly felt like a fish out of water, as all my friends had really awesome ones like “Marie” and “Cecile” and “Catherine”. I was just plain “Jennifer”.

Although I wasn’t always just plain Jennifer.

I was the third of four kids. Before me came Richard and then Carolyn. When I was five Christian arrived. He damn near killed our mother. She spent several days in the hospital after his birth and I have these odd recollections of my father crying, trying to be strong for us knowing that my mother damn near bled to death giving birth to Chris. I instantly was pissed off by this little interloper who almost took her away from me.

My mother and I have always had an intense bond. It probably began the day I stood up in my crib and screamed. I was just a little past one at this point. And as it has been recounted to me it goes as follows:

I stood up and screamed. My mother came in, in time to see me put my hands over my ears and my eyes to roll back into my head. I fell backwards.
My parents took me to the emergency room. I was diagnosed with possible seizures. These graduated over time to psychomotor seizures. They became repetitive. They came on in force during times that I was experiencing colds or other illnesses.

A particular story my mother told me about occurred during one of my frequent hospital stays at Children’s memorial in Chicago.

It happened when I was about five years old.

I was having another one of my episodes. Which is what we used to call them. Mainly because not everyone knew when I was having a seizure. One of the oddness of a psychomotor seizure is that while my world is being turned upside down, very few would know something was wrong. With a psychomotor seizure the patient could come across very normal but removed from the picture. I would become very vague, almost as if I was daydreaming. But inside my head it was a completely different story. My neurons were misfiring at a rapid fire rate.

There were strange triggers for my seizures that went beyond the cold and flu. Often if words were spoken very slow or very fast it could trigger one. Lights that blinked too fast.
I would have these visions of a ladybug on a slow moving log or someone coming at me as if in a fast moving dream.

They were disturbing and having to recount them to dr’s was equally as petrifying. The dr’s had brought in several interns to observe. And a couple of the interns decided to diagnose me as Schizophrenic. Now this couldn’t have been as far from the truth of the situation going on. My mother was beside herself and became very angry with these people.

Which now that I’m a parent I understand her vigor in defense of my condition.

As the years went on the seizures never tempered themselves. Couple this with inner ear problems and you have a childhood that was less than ideal.

I spent so much time within the hospitals that I my only recourse was to learn how to read.
There are always stories circulating that those with seizure disorders are more prone to early learning and special abilities that transcend the normal.

At a young age my parents knew I was one of them.

When I was three I was bound and determined to learn how to read. Both of my older siblings were in school and I wanted to go with them as well. So I taught myself how to read.

According to my mother it happened very naturally. I also had the inane ability to understand people, to read into their thoughts just by being in the room with them. I was called Hypersensitive. It was so powerful that as I grew older there were times that all the sounds and feelings from all the kids within a classroom would overwhelm me and I’d run out of the room crying.

I had a hard time keeping friends. I had no problem making them. From the outside I was like every other little girl out there, it was just that on the inside my brain was fighting against me.

I made the best of it and retreated to my books & the stories I made up when things were tough. As often as I look back and see how alone I felt during those formative years I know now that I wasn’t. I had days & perhaps weeks, but for the most part there were those who did seem to get me.

Although it was when I hit my teen years I really came into who I was and when I met people who understood what I was going through.

The seizures abated when I was in my mid teens. In fact I took myself off the medication by the time I was 14. I was done with the monthly blood tests. I was done with feeling like a freakshow. Which was honestly how I felt back in the early 80’s.

They stopped. Not completely though. There were a few rare occurrences with them in my early 20’s. After that I never felt them.

Only as time had proven, this was only the beginning of my neurological issues.

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