Posted on by Lawren McConnell

Dear Senator

Dear Senator,

I am one of many of your constituents writing and calling your office concerning the Senate health care bill. While relieved that the vote has been delayed, I am fearful for the future. So, I write.

You know the numbers. You know how many New Mexicans are covered by Medicaid, how many live with pre-existing conditions and how many need or may need treatment for addiction. You know how pervasive poverty is in our state and how not only access to care, but access to affordable care can make the difference between life and death for so many of us.

You’ve also, I’m sure, met with representatives from our hospitals and our large insurers. You’ve met with employers and with individuals who are concerned about their rising premiums. I know you meet with patient advocacy groups regularly who tell you their stories of living with disease, the personal and financial costs of the disease, and they tell you to please support research and access to care. I’m sure your staff have many leave behind packets with personal stories and statistics. This letter doesn’t re-state all that you have heard and read, but instead poses a question.

As an American, I can’t help but wonder what the philosophy is behind this draft bill, and why instead of working to repair the Affordable Care Act, the GOP is looking to completely replace it. We’re all reading about a possible future should this bill pass in which millions lose access to affordable healthcare across the nation including those on Medicaid who need it desperately.  “Healthcare is a business” and “this isn’t an emotional decision” are position statements that are beyond belief to me when we project how many of our fellow Americans may die as a result of this bill.  How is this at all even discussed as an option in a country that values prosperity and freedom?  In my mind, the question arises, do I have a right to health care? I’ve read conflicting arguments on this question. Many believe it is a basic human right, and others see healthcare as a business and believe that if citizens have a right to healthcare it is impeding the freedom of others, such as those that would be forced to provide it. As old-fashioned and patriotic as it may sound, one of the perks of being an American is, well, liberty or freedom. The Declaration of Independence states, “ We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Believe it or not, I didn’t choose to be among the millions with chronic illness. If I did, my story would read more like this.

“I remember when I decided to be diagnosed with my first chronic illness. At 14 years old, I thought, I would love a disease that allowed me to first, mooch off the government and second, provide me with social and economic limitations. Why would I choose to be diagnosed with a disease with such financial and emotional costs? Oh, to be a more grateful citizen than your average healthy person, I suppose. Oh, and to gratefully mooch off the government. If at all possible, I would use my disease to not work so that I could be lazy. After all, laziness is why I chose to have all these devastating illnesses. Totally worth it.  Right?  Still waiting all the great benefits of disease to kick in, but I’m sure they will eventually.”

Of course, I didn’t choose to be diagnosed. I also didn’t choose the illnesses that I was diagnosed with as an adult. Like all those living with chronic illness, we were dealt a shock. Why do we deserve to pay so much more in our struggle to be healthy, if we were never given the choice? I am so fortunate because I have insurance through my employer, but there was a time when I moved home and helped with the family businesses. I was only able to be with my family because my husband and I could get covered by Medicaid. Then, I found employment with health benefits. I’ll never take for granted that Medicaid was there when we needed it, and it kept me healthy.

I didn’t intend to be an expensive patient, but I do need comprehensive and affordable health insurance. The essential benefits packages that we fought so hard for just a few years ago mean that I won’t be thrown into poverty just to pay for my medical care, and for all those who are yet to be diagnosed, it won’t mean bankruptcy. It means we don’t have to choose between food and our prescriptions.

Here’s the deal. If I don’t have access to my prescriptions, I can’t work. If I can’t work, I won’t have access to my prescriptions. My prescriptions, and my many specialists, keep me able to do things like drive a car and hold employment. I can then pay taxes, and contribute to our economy. As simplistic (and slightly sarcastic) as that may sound, it’s the truth.

What would happen if my provider cut essential benefits like prescription drug benefits or coverage for my specialists?  Even with a pretty good paying job,  I couldn’t afford the out of pocket cost.   I would have to just stay home in pain, suffering from the complications of my illnesses that would eventually take my independence before taking my life? Basically, without affordable insurance, I couldn’t work. I would have to use the emergency room on a regular basis just to get medication and then I couldn’t pay for the hospital visits. Then, the complications of my disease would worsen. I would then be trapped by my pre-existing conditions.

I have already written that I am fortunate to be covered. If you met me and shook my hand you wouldn’t be able to tell that I live with chronic illnesses. I am not that constituent that will tell you that I would likely lose my insurance should this bill (or something like it) pass, and I know many have shared that story with you.  But of course, even being among the healthy and insured, I have pre-existing conditions and the protections I have seen for pre-existing conditions in this bill are anything but.

What I can tell you is that health care is freedom. So, do I not have a right to affordable health care so that I can work and contribute? Do I not have a right to manage my illnesses with medications, necessary tests and guidance from qualified doctors so that I can live and pursue happiness? Do we not all have that right?

Sincerely,
Lawren McConnell

Posted on by Lawren McConnell · 2 Comments

Awareness

“The Lord sustains them on their sickbed, and restores them from their bed of illness.”
— Psalm 41:3

Today marks another World Diabetes Day.

November 14th commerates the birth of Sir Frederick Grant Banting, one of the men who discovered insulin, saving millions of lives.  November is Diabetes Awareness Month, in which the diabetes community goes blue, or gray, or blue and gray.  The hope is that our neighbors to which diabetes is foreign will learn something about a disease that impacts hundreds of  millions worldwide, each one differently.

Just keeping up with what is new to learn in diabetes is a full-time job.  (I almost kind of sort of have that job.)  Each person living with diabetes has a unique perspective, a perspective that must be respected, because only one person knows what diabetes is.  It’s their enemy, it’s their greatest motivator, it’s their burden or its their success.  Learning about what diabetes means to different people living with it or caring for someone living with it, has became an ever increasing focus of creating awareness.

This month is also Epilepsy Awareness Month.  I know remarkably little about my own illness compared to the information I have accumulated on diabetes.  In fact, I know few others with epilepsy, enough to count on one hand.  I have more friends with diabetes than I do without.  I know my epilepsy as best I can from tests and discussions with specialists.  I know my epilepsy from how it impacts my daily life, how it impacts people’s opinions of me, and I am quite aware that it could be worse.

This month also marks new types of awareness for me.  I am now more aware of Parkinson’s.  My father was recently diagnosed with a disease I knew absolutely nothing about.  Search by search, I am learning more, becoming more aware, learning about our next steps.  I was also woefully in the dark about cancer, until my sister’s recent diagnosis sent me searching for information.  Information filled with very long words for complicated categorizations, treatments and stages.

At this point, I’m becoming tired of becoming disease aware.  It’s a lot of awareness to take in.

Through the health obstacles I know, all the new ones to learn about,  I found a deeper awareness.  I am more acutely aware than ever how fragile our bodies are, how susceptible to disease they can be, and how important the strength of the spirit is in attaining health.  I am more aware that my family is more important than the next paycheck to pay the bills.  I am more aware that the tight embrace of a new friend can lift an enormous weight of anxiety off the shoulders.  I am aware, through continuous reminders, that God is good, that he is all around us and that something will be learned of new challenges to the body.  Another new awareness to come…to make us stronger and able to lift up others not yet diagnosed..or even aware.

Posted on by Lawren McConnell · 6 Comments

My Storm Cloud

“No head injury is too serious to despair of, nor too trivial to ignore.”
— Hippocrates

I remember my last seconds of my life before epilepsy.  My great-grandmother had passed away, and my parents and I were making the three hour drive to help organize her belongings.  We stopped  for food.  I laid down in the back of the car.  My parents got out of the car.  Got back in.  Mom first *click* door closes.  Dad *click* door closes.

The next thing I remember were the first few moments of my life with epilepsy.  My mother had moved to the back seat, Dad was driving, speeding and swerving.  Mom had panic all over her face, and she was crying.  I asked her what was wrong, where were we going.  She told me we were going to the hospital.  I was shocked.  Why?  She said I needed to go.  Why me?  I was fine.  My heart started to pound in my chest.  This was a nightmare, this wasn’t happening.  When they sliding doors parted at the ER, nurses had a stretcher for me.  A stretcher!  There was a mistake, not me, what was going on?  Why were my parents in on it?  As they moved me to a bed, my dad grabbed my knee and said everything was okay.  They explained that I passed out and had a seizure.  No I didn’t.  Yes, I did.  No, I didn’t.  The doctor asked my dad about family history.  He said my older half-sister, his daughter, had epilepsy.  What?!?  No, she didn’t!  Then all focus came back to me.  I was shaking I was so confused and scared.  My whole body vibrated.  I started to understand that something was wrong with me when I realized that I didn’t know where I was.  Why were we in the car?  Why were we in a different town?  We were traveling?  When did all of this happen?  I kept asking questions as if I had entered a parallel universe.  Mom became noticeably worried.  I knew she was wondering if I had forgotten Nana had died.  I remembered that.  The doctor explained that short-term memory loss was normal, and it would come back.  Dad said everything would be okay, I would be fine.  Well, I had had enough.  I hate hospitals, being the one in the bed was a new and unwelcome experience for me, so I would be leaving.  The doctor said I needed tests, but that I should be fine to go.  I swung my legs around and hopped off the bed.  My legs were wet spaghetti.  Dad had to hold my elbows.  In that moment, I felt the split.  My body wasn’t mine anymore.  It had gone rogue, without my consent.  The shock wore off and I felt it.  Every muscle in my body hurt, my head hurt.  I had bitten my tongue pretty bad, and it was sore and stinging in my mouth.  Dried blood stained the corners of my mouth.

I was 14.

The tests that ensued made me feel like I was on the path to death, and they were just confirming it.  I’ve been through numerous rounds of tests since then, but the first round I remember as being the most scary, the most annoying.  Dad and his sense of humor and his fatherly obligation to make me feel safe, lifted my spirits.  Then my first neurologist called us in.  I had three oral medications to choose from.  All had side effects, but not bad, he said.  Two were the same, except one was extended release.  The other could cause severe liver damage, fetal deformities, but at 14, I was most threatened by excess facial hair growth.  Extended release it was.  Dad smiled and said, “See, all you have to do is swallow a pill a day, and you will be fine!  No seizures!”  As we left, my next appointment was put on a business card with a brain on it.  I was normal teenager, and then looking at that brain, I felt like I had a brain problem.

Our family doctor said it was best that I and my parents not tell anyone about my epilepsy, because of the stigma of the disease.  Epilepsy’s reputation, not it’s physical effects, would have more of a negative impact on my life, was the message we got.  So we didn’t.

I was 20 years old when I realized what absolute nonsense that advice was.  Eating one of my last lunches in Edinburgh before returning triumphantly seizure-free to my parents in the States, I had a seizure in a restaurant.  I knocked out my two front teeth.  That, and the giant blue bulge on my forehead were my souvenirs from face-to-tile impact.  Yeah, I was really upset about my teeth, and the embarrassment of seizing in a public place, but the look on my friend’s face haunts me still.  She was in shock, and scared.  She never asked to be put in this situation.  I should have prepared her for the “just in case.”  I didn’t trust to tell her, I thought she wouldn’t feel safe around me, she wouldn’t want to me friend.

In all fairness to my young mind, I still deal with the stigma of the disease, as does everyone with epilepsy.  I am fortunate.  If I had been born in the 17th century, I could have been burned at the stake for being a witch or possibly exorcised.  As I was watching an episode of Mad Men, I admit to judging a character who seemed to be a swindler, possibly a drunk or drug addict, taking advantage of his poor sister. What a loser, I thought.  He had epilepsy.  Unable to get work, he was forced to take small change from strangers and live on the road.  No one to call a friend.  Fifty years ago, I might have had a different world to face as well.  Now, when I tell strangers face-to-face I have epilepsy, their arms cross.  I usually get either a couple of steps backward or at least a lean backward.  Some people try to compliment me and say that I don’t look like I have epilepsy.  A couple of people began talking to me as if I had a developmental disability.  All of them seemed paranoid, that I would drop to the floor that minute and they’d have to deal with it.  To be completely honest, writing this blog post is making me uneasy.

All my seizures have been tonic clonic (also known as grand mal) with no warning signs whatsover.  For me this means I wake up in a place I don’t recognize, no recollection how I got there or what I was doing, and with a bitten tongue, sore muscles and a migraine straight from hell itself.  In thirteen years, I can’t tell you how many seizures I have had, not because they are so many, but because I was never in the mental state to take notes after having them.  First comes denial where I battle whoever is with me as they try to tell me I had a seizure.  Not only do I not remember, but admitting I had one means that I failed somehow.  Which brings me to the second step:  guilt.  Having a seizure turns me detective – why did it happen?  My medication wasn’t taken, I didn’t get enough sleep, I did something wrong.  After guilt comes further investigation into what I did wrong.  Very rarely is a reason found, which depresses me.  I have absolutely no control.  Complete helplessness.  I can take care of myself, and still have a seizure.  Anytime, any place, without warning.  Then I’m angry, depressed.

After one particular seizure, I came out of it with my boyfriend wiping a wet washrag over my arms.  I asked him what he was doing.  It burned.  He said I had a seizure, I thought no, because that’s not right.  He took me to show me the kitchen as proof.  When I got up, my knees almost collapsed under me.  Dammit, he was right.  I hurt, too.  I found my kitchen floor covered in glass.  The door to the stove was busted open.  Apparently, I had a seizure standing up, fell backward and my head hit the stove.   He heard the noise and ran downstairs to find me seizing in a pile of broken glass and blood.  Well, we needed a new stove.  I didn’t tell him or my parents that every step of getting that new stove made me physically ill.  I was not ashamed of my illness, of that seizure, but sickened that he had to see me like that, lift me from the glass and  toggle the line of waiting for the seizure to stop or calling 911.

The first seizure he had witnessed was a close call.  He found me slumped over in the garage, behind the wheel of the car.  Car was turned on.  He told my years later that he cried he was so worried.  I remember coming to, arguing with him about me having a seizure.  Then, as my short-term memory came back, I remembered I was on my way to church, and the very last thing I saw was my hand going for reverse.  So many close calls, that even after time has passed, the fear of what could have happened or could happen could stay with me, but I don’t want to live in a constant state of paranoia.

Dad taught me to think positively, to have a sense of humor.  I do have a sense of humor about my epilepsy.  One time, a piece of tongue fell off as it was healing right as I was talking to my boss.  I spit it into a Kleenex and said, “Whoops, tongue.”  It gave her chills and made me laugh.  Also, the fresh scars on the edges of my tongue were great when you are waiting forever at a restaurant.  I could have just told the waiter how hungry I was and stuck out my tongue.  Mom didn’t think that would be funny.  Having a sense of humor about it not only put others at ease around me, but it put me at ease and reminded me that one thing I can control is my attitude.

I have been seizure-free for over three years, thanks to a new drug.  I give thanks to God and the fact that now over 20 anti-convulsive medications are available to those with epilepsy.  Thank you medical science.  The pills I was taking for over 10 years were eroding my bones and hurting my liver, plus all the medications I was taking to combat the side effects of the drug also put a cramp in it’s effectiveness.   The pills that have controlled my seizures now are a “cleaner” drug as my epileptologist would say.  I feel good, I feel confident.  It has freed me.

Because I have a type of epilepsy I cannot grow out of, this chronic illness will preempt every decision I make.  If I have to take a new medication to improve other areas of my health, epilepsy comes first.  Going out, lights, entertainment, sleep loss, stress, work, relationships, illness – all can trigger a seizure.  An epileptic seizure is an electrical storm in the brain.  The way I think of it is that epilepsy can cause lightening, but all other times it looms over me like a cloud, following me wherever I go.  I have to make sure I am prepared for any lightening that could strike.  Constantly trying to avoid getting hit.  But just like those unfortunate enough to be struck by lightening, you don’t know if you’re going to be hit.  You just have to just keep watching the cloud.

Epilepsy is a chronic illness, and there is no cure for me yet.  I’m reflective enough to know that epilepsy has given me lessons about the importance of taking care of myself, empathizing with others, and the strength of finding yourself under a disease with an awful stigma attached.  Would I refuse a cure because of the lessons?  Hell, no on that one!  First, epilepsy has been a huge burden for my parents.  I’m an adult now, but they hate the idea of me being alone.  It is a huge weight for them, one they have carried since I was diagnosed.  If my child inherits epilepsy, I will be the one holding him or her, watching the blood trickle down their chin and their lips turning blue, praying that each second be the one where they take a breath and it’s over.  My child will learn to share their gifts, strengths and compassion with the world, but that they also have to do it under the context of epilepsy, that they will have to tell others, and the reaction of the world is something they cannot control.  Now, just for me, the worst thing about not being cured is the “what if.”

I had my hand on reverse.  If that seizure had hit 10, 20 minutes later, I could have hit someone with my car.  That is something I can’t imagine trying to carry.  I am fortunate today that my cloud looms above me, and although threatening, it does not crush me or others.  Hurting someone else, even if I had no control, that complication from my epilepsy would crush me.

I am so blessed, and well, lucky, that I am seizure-free, and that epilepsy hasn’t stopped me from going after my dreams, but not everyone with epilepsy is so lucky.  I can take care of myself, some cannot.  I can think, read, write, learn, communicate, and some cannot.  Some have seizures, and some have seizures every day.   Our doctors need a better understanding of this incredibly mysterious disease.  Three million of us in the United States alone have it.  Chances are, you have met someone with epilepsy and just didn’t know it.

I have many blessings, and can give back by telling my story.  It’s tough, but my old family doctor is wrong.  We need to let people know that epilepsy is an awful disease full of fear, moments of helplessness and paranoia, but with medical advances we can conquer epilepsy day by day, and by talking about it, we can conquer the unfair stigma that this disease can carry, day by day, person by person…until the cloud disappears for good.

For more information on epilepsy, here is a good article.

Posted on by Lawren McConnell

A Path of Blessings

As my last post indicates, I had a really hard, really weird couple of weeks.  So many things came at me at once.  So many answers were demanded of me, and I had so many questions.  It was at home and at work, and those two weeks left me stupefied, and a little crazy and numb.  I don’t really remember all the things I did at my level of stupefaction.  Probably said something stupid. 

If you can’t imagine my frame of mind, scribble on a piece of paper.  Yeah, that was pretty much it.  Maybe, Dublin captured it best in this photo.  This is kinda what I looked like for the last two weeks.

Now I’m still young, when the pressure to figure things out is at an all time high, or at least I perceive it to be, so I’m owed a little crazy.  I’m also old enough to learn something from these periods, of ” WTH?!?”

I’m not much of a drama queen.  I don’t like drama, I like excitement.  Please don’t confuse the two.  I’m an excitement queen.  I run on possibilities and caffeine.  If I’m bored, I’m miserable.  (And more likely to text you.)  So, when pressure and bad news are at all time high, and possibilities of excitement, adventure and happiness are low…and all this news comes at once, culminating in one weekend… I moan and I run in circles.  Phew, so tired.  You know, from the running…

So what did I learn from the running and the crazy?  A sparrow in the airport that landed at my feet was the first reminder.  Things might be falling around me, and the path ahead completely unclear, but there is a path, and there is a Guide. 

Another reminder.  This morning, I met a man whose young daughter was diagnosed with type 1 diabetes just days ago.  She is still in the hospital.  His world turned upside down and a flood of new information and new emotions hit him.  He looked shocked, he looked confused, and in his eyes I saw grief and resolve.  In a day, just like any other, his world and that of his family’s forever changed.  His world was confusing, but I had knowledge.  I had knowledge of an incredible life his family had waiting for him and friends waiting to meet him.  I hope he uses me, and our resources in the time that he is shocked, confused and heartbroken.  Because where he cannot see past her getting out of the hospital, we can see her playing and laughing with friends.  This meeting gave me perspective. 

Reminder three.  My appointment with my new epileptologist.  I had never been given a real diagnosis.  I was told I had epilepsy and ever since then, it was figuring out how to control it, the end.  I knew of people who had grown out of their epilepsy, and thought, in the back of my mind, that my condition could be temporary.  I have a type of epilepsy that does not go away, and was told that I would be dependent on medication for the rest of my life, with the threat of seizures.  It could happen, but statistically, I should not even consider it.  I could try tapering off my meds if going seizure free for two to five years (I’m in year three), but seizures are so terrifying to me that the thought of turning myself into an experiment that can’t drive, work or be left alone is not really an option for me.  This news was not disheartening for me, but I knew it would be somewhat of a let down for those who had been through this with me.  Looking at me, you can’t tell I have epilepsy.  I  haven’t had a seizure in three years, and you know what?   I might not have another one.  That’s an amazing blessing, and I cannot take it for granted.  Last weekend, I saw a young woman walking around with a helmet.  At this appointment, I saw patients with noticeable neurological disabilities – they could not walk, they could not speak.  I went to my appointment with my best friend, my rock.   He cares so deeply for me, and although the path ahead will not be free of epilepsy, I have so many blessings now.  In the midst of the crazy and heartbreak, I even have the blessing to see past it, to see the reminders.  The couple with serious health issues had each other, and in the gentle care they gave to each other, I could see that they could tell what a blessing they were given in each other.

I can get some really awful news tomorrow.  My dreams could become dust.  But in that dust come new dreams and new opportunities.  Taking hold of today, and finding the great in tomorrow.

Posted on by Lawren McConnell

On the Edge of a Coin

Every day I feel like I am sitting right on the ridge of a coin.  It moves back and forth a bit, but I do my best to stay right there on top, so it doesn’t fall one way or the other, and oh, it does.

My position with JDRF is on top of that coin along with my personal connections to type 1 diabetes, and my personal experiences with epilepsy.  I am sure my analogy makes sense to those associated with illness in one way or another. 

Thinking of type 1, one side of the coin is positive.  There are incredibly successful people living each day with type 1 diabetes, and they are successful in many different arenas.  In work and at home, these people are successful and live healthy, active lives.  In fact, I know many who put me to shame all the time, because I don’t work out as much or travel as much, etc.  Someone diagnosed today can do anything they dream of.  They can raise families, they can excel at school and in sports, they can travel internationally, they can become a justice of the Supreme Court, or hey even president!  There are some with type 1 who have worked hard to find every avenue they can to become pilots and race car driver!  Outside of joining the military there is nothing you can’t do!  The simplest and most powerful thing someone with type 1 can do is reach out to someone else who is having a hard time with the disease and work to lift them up.  The message on this side of this side of the coin is the positive one, the message that even with type 1, there is nothing you cannot do given the tools and the motivation to use them. 

The other side is a harder side to deal with, although it is just as real as the positive side.  Diabetes is a dangerous disease.  It can take a life in a moment, the management of it is a rigorous game that changes but never stops, and complications are devastating and sometimes debilitating.  While news breaks of those defying the odds and living beyond incredible lives with type 1, there also comes news of young children losing their lives and adults dealing with complications that impact their very quality of life.  Type 1 is a disease that doesn’t always come al a carte, either.  Other autoimmune diseases can add more strain to management.  It’s confusing and frustrating, causes depression and anxiety, and needs a cure.  Before another life is lost, before even another day is lost to diabetes, we need a cure.  We needed one yesterday.  This isn’t a disease that is easily managed, it’s a real life enemy, that strikes all ages and every one in a very specific way.  I have met so many people who work hard to manage their diabetes and are the pinnacle of health.  I also know many people who work hard to manage it, and struggle immensely from high blood glucose levels and scary low ones.  Even though long-term complications sometimes make you think that they come slowly, some can come so quickly that it takes your breath away. 

Professionally, I have used both messages.  In outreach, I am all about the positive side.  Children, parents, families and adults need to know that the choices they make today impact their tomorrow.  They also need to know they are not alone.  It is a constant battle, but because of advances in technology and treatments, and the support of millions, you really can do anything!  Just like anything else, it takes drive and work.  It also takes the ability to dust yourself off and try again.  I like outreach.  To bring people together in the spirit of family with the feeling that life is amazing, so fight for the one you want!  Incredible job.  I also worked on the other side of the coin as a fundraiser.  If someone doesn’t live with type 1 or they don’t know about the disease, it’s hard to say donate to JDRF.  There are so many places to donate money and to volunteer!  Other disease organizations all have the message that we need to get rid of the disease, or educate the public, or provide programs for those living with it, and so on.  So, knowing that this disease is dangerous and can strike at any moment, we need to convey that a cure is absolutely necessary.  You don’t just stop eating sugar, start taking insulin and that be it.  So, if we are asking to fund research into cure and treatment therapies, we need to say that we are saving lives.  And its true.  A cure will save thousands of lives a year.  Plus, it would have huge implications for other autoimmune disease cure therapies.  So, here I sit, on the edge of the coin.  Having to balance the messages.  I take my job personally, probably too personally for my mental health, but the Diabetes Online Community knows what it feels like when the coin falls on its end.  Blue candle.  The coin falls to the reality that this enemy took another, and I feel it physically when the coin tips that way.  Like a punch in the stomach.  And then, as Facebook profile pictures start to resume to faces of happy kids, family pets and vacations, the coin goes in the other direction.  Life must be lived to its fullest.  Between these two sides to the same coin we have to balance.

I always put a disclaimer that not having diabetes or a child with diabetes, makes my input a different one.  I honestly cannot know the experience of living every day with type 1 diabetes.  Mine was something different:  epilepsy.  I was a lucky kid, and am a lucky adult.  Yes, epilepsy almost took my life on numerous occasions and has had other effects on my health.  But because my management of it now consists of taking two oral medications a day and watching my routines, I feel incredibly blessed.  It’s there, but it isn’t a weight on me.  The other side to this coin is seen when I am faced with what epilepsy can do.  I don’t think too much about a cure for epilepsy, because right now I feel that my treatments are controlling my seizures, and I have a kind of cure.  When I was having dangerous seizures all the time, I wanted this disease gone and now, and was so frustrated by how confusing it was, not only to me personally, but to researchers and doctors!  Epilepsy almost took me, yes, but it takes many lives annually.  Also, some people try everything in the book, and they cannot control their seizures completely.  I can’t imagine this.  Thinking about it makes me cry.  Not having freedom?  Complications can even include loss of mental capacity.  What if I couldn’t do anything without a care taker?  What if I couldn’t read and understand or write?  But, I get to take my cure twice a day, and live my life.  I fear having seizures, and I fear that another unknown factor will come into play and my cure won’t work again.  But life is short and beautiful and I balance my own coin, knowing how lucky I am, and reminding myself of those not as genetically fortunate, who need a cure. 

I suppose I am writing because every conversation I have includes the coin.  I’m from the school of thought that people are not diseases, and there are no diabetics.  There are people living with diseases.  But we shouldn’t have to live with them either. 

Even after coming into consciousness right after having a seizure in a public place, I have never been an epileptic.  I’m Lawren.

Posted on by Lawren McConnell · 2 Comments

I Just Wanted a Soda

I thank my dependency on carbonated diet drinks for my safety last Sunday.  Just seconds out of the car, into the gas station (Allsup’s) and standing in front of the cold drinks…boom.  Seizure.

I should have known better.  I was tired, really sleepy.  I also couldn’t form sentences correctly.  I was misfiring.  After my father lifted me up, out of the store, back into the passenger seat of the car, I came to.  I didn’t know where I was, why Mom was driving, why the dog was with my parents, and I surely did NOT have another one.  No, not another one.  I was doing so good!  I was fine!  The medication was the right amount!  The hormone replacement was not interfering because I wasn’t going on and off. 

The worst part of epilepsy is the helplessness.  I can’t stop a seizure, and my little ques of an oncoming tonic clonic are usually only noticed in hind sight because they change or are very minor.  My loved ones look so angry…so angry.  I slept!  I did!  I took my Tegretol, I did!  I feel they hate me for this.  I just hate this.

I count my blessings.  God has protected me thus far.   Why I have epilepsy, I don’t know.  Somewhere in the genes of my father’s side it laid, waiting for the girls.  I have a different hypothesis:  we’re just too intelligent.  Our brains can’t handle it.  It’s overload.