Yes, I am epileptic

Did you know March 26 is PURPLE DAY - ?  Do you know that is Epilepsy Awareness Day?

...and some might be surprised to find out that aside from being a mother of two, a cake designer, and a talker...I am also someone who lives with epilepsy.  I was diagnosed when I was 11 or 12.

The diagnosis
The journey started when I was still living in Peru.  I had started dropping things for no apparent reason.  At first, mom and dad would scold me for breaking things (I broke a lot of bowls during dinner time).  I was told I was clumsy and was scolded many times at first.  Thankfully my mom was observant enough to realize soon after that something was beyond simple carelessness.

So my mom took me from doctor to doctor, trying to find out if there was a medical cause for my carelessness.  I had blood tests, CT scans, MRIs and ultimately they did an EEG test on me (ElectroEncelography).  

There was no diagnosis until our trip to Hong Kong, where I was born.  During the trip my parents took the opportunity to seek more medical advice.  And as a result I was diagnosed with Epilepsy and given medication.

I really do not remember much of this period.  I don't remember anyone really speaking to me.  I only knew from thereon I was told to take pills.  I only knew I hated EEGs and blood tests.

The Seizures
Soon after we got back to Peru I started forgetting to take my medication.  But I was too scared to let my parents know so I kept quiet.

I did not know at the time missing a dose was a big deal.

So in the span of a short time not only did I start to drop things again but I developed seizures.

I still remember the seizures like yesterday.  It is one of those experiences you will never forget.  The helplessness you feel before losing consciousness.  Wanting to scream "Help" but completely unable to.  Wanting to control your body from shaking only to find that the more you try the more violently you seem to shake.  The waking up completely confused.  The aches and bruises (I was lucky the hardest thing I ever hit during a seizure was a ceramic floor) afterwards.  I had a total of 4 really bad seizures and they ranged from falling in the bathroom while bathing (dad had to break the door to get in to help me and ever since then all the locks in our house were taken away), simply coming out of a room, teens camp and lastly during a Short Term Missions Trip during breakfast time (the latter happened in a relapse - read on).

After 3 bad seizures and countless of dishes broken amongst other things my parents had no choice but conclude that the medicine I had been taking since our visit to Hong Kong were not doing what they were supposed to be doing.

The Good Help

This was when we found my God-sent neurologist.  She was great at what she did and was patient with us teaching us what epilepsy was about (and not).  She guided our entire family to accept to live with epilepsy, but she also encouraged me to continue to living life as usual:  to continue studying, to not let this disorder change my quality of life.  As a child, of course, I simply remembered her gentle hands and smile and her care.

The deepest impression was simply that for the first time in my life I felt the doctor was looking at me in the eye and talking to me.  He/she was not talking to my parents.  In fact I remember one time she asked me about how school was going and my mom responded.  She stopped her from continuing and explained she wanted to hear from me directly.

I wonder if she had any idea how much support that meant to me.

Peru does not have universal health care and at the time there was no way our family could have afforded this neurologist.  We would go to her office and find ourselves sitting in the waiting room with nannies caring for children while their mommies were all dressed impeccably reading the latest fashion magazines.  In many ways I often felt so odd in that waiting room.

But once I saw her in her office all that changes.  I am just any other patient to her.  And her desire was for me to feel good, to help me control my seizures, and to achieve the best potential in life WITH epilepsy.

I am forever grateful for my doctor.  She would sometimes see us for free, other times charge us basic charges and many times would simply ask me to call her home to read her my regular blood test results instead of going into her office.

Accepting the new me - with epilepsy

This is when I personally consider myself being aware of living with epilepsy.  At first it was scary to think I might be having another seizure anytime.  Or the thought of having to rely on medication for the rest of my life saddened me.  I felt labelled sick.  I felt stigmatized and didn't want to let anyone know I was epileptic.  I would hide it whenever I had my medications.  

People that did know had the best of intentions but once we found the right drugs and dosage I really did not feel any different.  Yet people would approach you and ask you questions that would make me feel 'different' in a bad way.  It took me years to learn how to appreciate people's care without feeling labelled or threatened.

As I entered puberty I also noticed that exhaustion would trigger things.  Not quite seizures but I can't explain it other than to say I would sense things would not be all right if I did not stop and rest.  So in time I learned to be more sensitive to what I could or could not do.

The Drugs

I was taking quite a bit of drugs and at the time these were not cheap in Peru.  And even with money I remember having to go from pharmacy to pharmacy quite literally scouting for drugs.  It was not uncommon to hear us tell the pharmacist "we'll take them all".  Thinking back, I make a mental note to be thankful at the free health care I get now here in Canada...and refills are quite literally just a phone call away.

Lowering Dosage

So the years passed and I had gotten used to taking regular blood tests, taking pills three times a day, and talking with my neurologist who continuously and religiously would ask about not only my physical condition but also how things were going in terms of friendships and school.

Then the time came for me to go to Canada to continue my studies ... alone...in a boarding school.  Just before coming to Canada to continue my studies we started talking about trying to lower my medication dosage as I was quite drugged at the time.  We managed to lower the dose by almost half and it felt good not only to not have to take so much medication but saving mom and dad the money and the hassle of looking for medicine. However, we did not have time to continue the trial so we stopped at the half mark hoping I'd find a good doctor once settled in Canada.

Failed Attempt

I spent the next 3-4 years focused on my studies, on adapting to life in Canada alone, and eventually on helping my brother who was battling Leukemia.  But after his passing, during my second year in university I had decided to look for a neurologist to discuss cutting my medication further.  

Unfortunately, I had a bad referral.  The neurologist took me off all my medication all at once.  Thank God I did not have a seizure but I responded negatively in many other ways.  Something was very wrong and when I tried to find the doctor, I was told he was on vacation.

Even my family doctor knew better.

So back to the meds again.  I was very disappointed and felt like a failure.  I was embarrassed I had made friends focus on me because of my epilepsy.

The Third and Last Try

A few years later I moved to Vancouver and found a neurologist there.  I liked this fellow from our first meeting.  He asked if he could take a polaroid pic of me which honestly took me aback a bit at first.  He did explain though that he wanted to remember me every time he saw my file and having a picture helped.

We discussed the pros and cons of trying to lower my dosage again.  It was also at this time that this nice neurologist also talked to me about having children in the future.  I have been living with epilepsy for many years now and I was approaching the time in my life where marriage and children would become possible.

When I heard him tell me there was a slight chance women who have epilepsy might conceive genetically defective children, or that I would have to consider the pros and cons of keeping with my drugs despite the fact that traces will go to the baby because it was either that or risking seizures while holding or bathing a baby, my heart sank.  I remember leaving that office that day feeling like, yet again, epilepsy wanted to rob me of something 'normal'.

Yet I felt if I had to battle through this, at least God had provided me this time with a caring neurologist whom I trusted.  I was now a young adult and I no longer needed tender care, but I trusted this guy and he was honest and supportive.

So after some discussion with my then boyfriend and now husband, with my parents and with God, I took some courage and decided we would try to gradually monitor weaning off the medication one more time.

I was so scared of .... failing.  I wasn't as concerned about the seizures.  I was scared because in a way I had let weaning off the medication define part of who I was.

We successfully weaned the medication off my system and for the first time in my life I felt awake.  It's not to say that I was always sleepy but being off the medication now I did sense a difference.  I was more alert, more awake.  No wonder why my first neurologist would always ask me how I was doing at school!

The Set Back

A few months after I went to a Short Term Missions Trip to Peru.  On my 5th week, on the day I was to hop on the local bus from the village back to the capital I had a seizure.  It happened so fast I had no recollection of anything only knowing that by the time I woke up I was extremely disappointed.  I was in tears.  Not only had I had a seizure.  I knew what this meant - back on the medication.

I eventually got back to the capital and went to see my first neurologist.  My fears became true when she told me I had to be back on my medication right away and this probably meant I was going to be living with epilepsy medication for the rest of my life.

I tried to stay strong for the remaining week of the trip but when alone I would cry.  I would ask God why.  I would feel horrible inside me.  I would question everything I did or did not do up to this point.

Physically I felt so weak and drowsy.  Knowing now how I could feel without the medication and now with the medication, this was a very tough journey.  Being back on medication meant giving up on being more alert.  Having more energy.  But it was a no brainer.  I had to be on medication.  The alternative was way worse.

Having Children

After this set back I went back on the medication and began to live accepting the reality that I was going to be taking meds for the rest of my life.  I needed to re-learn that I am not defined by epilepsy.  I am not better or worse if I am able to wean off my epilepsy medication.

I soon also realized that in Canada being epileptic sometimes meant you had to tell people if you were filling official forms.  I would have to check that I had a 'disorder'.  At first I was taken back -- I never ever felt I had a 'disorder'!  But for me, the lesson was to learn that no label should define who I am because I knew I was God's child.  And HE has been, is and will be journeying with me.  I had to let Him define me...in Him, I find myself...not in epilepsy or whichever way people or society chose to label me.

And soon enough, I had learned to discreetly take my medications in public, to continue living while watching myself and how much energy I spent on activities, and on persevering even when sometimes it took more brain power to concentrate.

Then I got married and the conversation about having kids began.

And my heart sank.  I was not optimistic.

And having a miscarriage did not help.  But God knew what He was doing and He surrounded me with amazing people and doctors.  I am now a happy mother of 2 wonderful kids.  Before conceiving we had spoken with my neurologist on ways to lower the chances of birth defects.  We also talked about how much of my drugs would go into my children's system, including whether or not to nurse them.

Epilepsy lives in me, but I do not let epilepsy dictate who I am.

Yet...despite it all, because of my epilepsy, I have seen, heard, experienced things other people might not have.

The journey continues...and every year at my neurologists appointment my current neurologist asks me if I still want to try one more time to wean (though chances of success are minimal).

I am happy with what God has given me.  Living with or without the drugs do not matter as much any more.  I would rather be labeled as someone dependant on these drugs to control my seizures so that I can have a better quality of life...to enjoy my kids and family, to laugh with friends, to go out as I wish, and to live to tell others about what God is doing through us.

I am thankful...because I know many others that live with epilepsy struggle way more than I do.

So on this purple day....

Take some minutes to think about all the people that perhaps are quietly living (or even struggling) with epilepsy.

Take some time to separate the facts from the myths (do this test)

And say a little prayer for the people who live with epilepsy, the families surrounding them, their doctors...and ultimately you...the people that surround people like me.

Epilepsy Resources

http://www.purpleday.org/resources.php
http://www.epilepsy.ca/en-CA/Home.html
http://epilepsyontario.org/