When Medicine Isn't Enough: What Love and Certainty Can Do

I started writing about my personal journey with epilepsy because I felt that those of us who can, should start a cycle of sharing. The more we talk about a condition that has so often been whispered about - kept in the shadows - treated as a secret - the better off we all will be. When I speak of we - it's a collective we - any condition, be it severe allergies, asthma, epilepsy - changes not only the individual - but affects the family members and impacts the people who surround them.

The other day, someone reached out to me from halfway across the world from a part of the US that is close to my heart - the South --- and started asking me questions about my experience. I know I'm not a doctor. I do know the power of sharing an experience with someone who has undergone something similar. While we chatted for days, his story of hiding things to make people more comfortable, seemed so familiar - and yet I could feel how isolated he must have felt not having had anyone to speak about this with. So at some point, he asked me to tell his story. Let's call him Louie.

Louie was diagnosed as having ADD when he was in 13 years old in the 7th grade "...but they did no real test. They asked me questions and I took an academic style testt" Since then, Louie was put on ADD meds immediately, and then after high school a doctor told him his panic attacks would be resolved by Zoloft. " I did do good in school while taking it though, but I got sick of it before leaving high school and hid my partial seizures, thinking they were side effects of ADD."

"My parents are awesome ---- he said it was time to see a neurologist at age 22. From the age of 13 to that point at 22, I would get deja-vu and precede to vomit 4 or 5 times a week. I thought they were stress/panic attacks and being the idiot I was at the time, I didn't mention them to my parents because I thought I was just a big wimp who couldn't handle stress." It was only then 9 years later, that Louie was told he had been having partial seizures caused by gray matter heterotopia.

A few things strike me about this: First, that Louie was put on pretty strong medication for ADD without any real benefit of thorough testing. Today, children who are diagnosed for any developmental issues go through a battery of tests - to see if their behavior changes in the context of the environment, Louie shrugs it off, and says, "Well that was 1995, a lot has changed then."

Second: Like many people with a condition, like epilepsy, or ADD, or anything for that matter: Louie doesn't want his parents or loved ones worrying about him, or spending so much time taking care of him. So much so that Louie, like myself, and probably like many others, will go to the extent of hiding things. I've not been completely upfront about some seizures, I admit. Louie, for 9 years, hid the fact he had been having episodes until his father witnessed it one day and brought him to the neurologist. "We were both shocked when we learned what it really was."

Third: I had never heard of grey matter heterotopia (GMH). And I'm sure very few of us have. In fact Louie spends quite a bit of time reaching out to other people in forums looking for other people like him - because he has never met anyone else with the same case. And that's the point really isn't it - no two people have the same case. We all have unique experiences. But I did some research - and again, I am not a doctor - so I asked my neurologist, and since it is so rare, she had to do a bit of research on it too. And of course Louie told me about it himself. So what is GMH? Grey matter heterotopia is a neurological disorder that is characterized by the grey matter in the brain being located in the wrong part of the brain. It is associated with epilepsy and can affect higher brain functions and motor skills. Seizures are generally resistant to medication.

"Apparently 98% of people with my brain disorder are severely mentally disabled...but I'm part of the 2%," says Louie, who at 32 is graduating this summer with degree in Computer Sciences.

I was shocked - I had never heard of a type of epilepsy that was resistant to medication. Then I recalled Louie's last episode. "Almost 3 weeks I went to the ER because I had a partial seizure that would not stop from10:00 pm til almost 6 in the morning with they shot me up with Dilantin and some pain medicine to stop the horrible headache that accompanied it....It was the longest seizure I have ever had in my life without losing awareness and I thought I was having a heart attack or stroke and could not think straight. My arms went tingling and numb along with the headache. I had a really long dream-like deja vu episode the whole time."

Since then Louie has seen his neurologist (take note: 3 weeks after a major episode), who has moved him off from Dilantin to Depakote. Louie had been struggling with headaches and the feeling of dullness that Dilantin gave him. I told him that I had experienced the same when on Dilantin - and that essentially most anti-epileptic medicine are downers to manage spikes in brain activity. He then asked me if it was ok that his doctor instructed him to wean off Dilantin while starting on Depakote. I could only speak of my experience where my doctor worked with me to get me down from 14 pills a day to 1.5 and we had to have a system to step down from various medicines to not induce any reactions.

Louie's mistrust of the medical system seemed to be so clear. But who could blame him? He had been misdiagnosed with ADD and anxiety disorders - and only 9 years later was he properly tested and diagnosed. He reaches out to other patients for assurance - and that too I think is important - to have others to speak with. To not feel like you are alone. We may not have the same diagnosis - but we have the same language. We talk about auras - and the power of having a journal so that he can articulate what he feels before and after a seizure - to see what are the contributory factors - a change in diet, stress levels, medication? This we can understand.

We also talk about how important it is to have been in an environment where our parents thought of possibilities - not limits. He's had dark days - where he got angry. I did too. You wonder : Why me? Why am I so different and why do I lose control? And you do things impulsively like get off your medication to try to control your condition and realize it's foolish. The one thing that's struck me is that Louie thinks those days are behind him - and it's time to focus on the future because he's part of the 2%. He's 32 and he's graduating. He has life ahead of him. He's appreciative his parents let him lead a life of a "normal" teenager. He continues to research on GMH and seeks to connect with others who have it too hoping he can also help them. In spite of the dire diagnoses of the doctors - Louie is hopeful.

"My parents are awesome people." It's such a simple and powerful statement. It's filled with admiration and respect for all the care, support and love he's received and continues to receive. That's what love and certainty can do, beyond any diagnosis. It can fill your heart with dreams and courage. It can fill your spirit with strength to withstand an 8 hour seizure while you think you're having a heart attack. It can fill your brain with dreams so large that a short circuit in a your short term memory is not a problem while you finish building a code frame before you graduate.

It makes you say, - look, there's a lot of people who don't make it, but me, I'm part of the 2%.

Falling down and getting up

It's 5:55 am.  I've been awake an hour. I'm still jetlagged.  And I will not complain.  There is nothing to complain about.  I've been reading Humans of New York and while I feel such a swell of empathy for this woman in the picture - I am elated that finally,  there is a face to the hidden condition and effects that epilepsy can have.  For years,  many of us have been petitioning Google to bring awareness to epilepsy for dedicating a day to epilepsy by changing its doodle to purple for seizure awareness - to no avail. 

"I've probably had more than a thousand seizures in my life. I've fallen down everywhere. On the street, the sidewalk, the subway tracks, and down the stairs. I wanted to be a nurse, but I had to drop out of school because the epilepsy took my memory. Anything that I studied at night, I would forget by the next morning. I've got medicine now that keeps the seizures down to once a month, but that stuff messes you up too." - Humans of New York

 It's one of the "hidden conditions"  I suppose -  sometimes, many times,  you can't tell  someone you're speaking with has epilepsy.  Offten, they,  I mean,  we don't have any physical markers.  Often,  we  can go about our daily lives, at play, in school, at work, with friends --- until for that brief moment when things freeze.  When things just go blank.  Depending on what kind of epilepsy someone suffers from --- the experience can go from blanking out in the middle of a conversation as if you have left they physical world for a moment in time only to come back again ----  to  losing the ability to process words, fighting to string a sentence together, because your brain is firing signals wrong and you feel as if you are spouting gibberish. And you are.  

It can also be something as random as a Christmas Eve, when you are at check out counter of a Toys R Us,  you are paying the bill,  and suddenly, you swoon,  your head hits cement --- you faint.  You wake, confused, awash in a growing pool of warm liquid (you quickly realize it's your own urine) and there are a dozen people around you -  concerned shoppers jockeying  to give you CPR, another is the store manager calling 911 and not wanting you to leave because you might sue him, then your family just worried.  You close your eyes, feeling that you have failed again,  you are not normal - others have seen it.  You  just want to go home -  get clean - you tell the kind person from EMT this - he says you need to sign a waiver.  It is Christmas Eve,  the last place you want to be is in an ER in a foreign country.  You sign the waiver shakily and slowly get up on your feet and accept ride quietly back to your hotel room and drift back into a dreamless sleep fatigued.  The next day you tell everyone you are ok ---  you want to be ok.  You look at yourself in the mirror and you look rested.  You play with your niece and your head spins you can not shake the sensation that the world is shaking. You say gravely, bring me to hospital. Two hours later - you are told - you have a concussion.  It was from the fall.  It is Christmas.  And because you are surrounded by family, you are grateful.  

Or, you could be at play, when suddenly, your body freezes,  you fall, your eyes roll back, your little body starts convulsing.  You are unaware this is happening because you are somewhere else.  This could go on for seconds, or minutes.  Those around you will never forget the sight are terrified and panic.  They will remember this vision of a 3 year old shaking forever.  

Epilepsy to many, is a literally a condition without a face.  You can't tell who has it - only that when it happens to someone you love, it marks you as well, because you are hit with the realization of how seemingly random and almost uncontrollable it is..  All of the above, were seizure activities I personally experienced.  Of all - I can say  the two most difficult to manage are publicly falling - and the loss of control of speech.  

But it is important to note that for as many times as I have fallen -  as the woman in Humans of New York, has, I have gotten up.  That is what I am happiest about. This is what I am celebrating this early morning.  I count myself very blessed to have had the opportunity to have had great medical care - to have a doctor who cares about me like a mother - who is tireless in finding me the right cocktail of medicines that suit me the best.  She knows that I want an active life. For years other doctors had given me a list of Do Nots: do not do sports, do not swim by yourself, do no travel alone, etc.  My doctor met me and understood this was not going to be how I would live my life. She helped me find medicine to help me live a life that would enable me to complete my Must Dos:  complete a half marathon, swim freely in the ocean,  travel without constraint.  Today when I have seizures, they are much milder.  I've fallen down on my bed,  lost consciousness, woken up, and then completed a 10K hike with a friend.  I don't take this for granted.  

My doctor tells me it is a miracle I have no memory loss - because with each seizure, brain cells die. My heart bleeds when the woman from HONY says epilepsy took away her memory.  I am not sure what makes me different, I know I am blessed.  I  know however how painful it is to lose even a second of time, when you can't remember what happened and you have to rely on the memory of others to stitch things together. "What happened? What did my face look like? How did I fall?  How long was I out?"  I  also know the pain of what it is like to lose control of what my ability to speak - when I was in the middle of a conversation with my father -  I couldn't connect words together - I don't think I have ever been more panicked, more scared in my life.  Thankfully it didn't last long --- yet to know that it was a possibility was frightening.

Most of all, I am not impervious to the effect my epilepsy has had on the people around me.  And this is where the real blessing is --- I know I could have grown up surrounded by fear, doubt and constraint -  just waiting for the "next one" .  My family and friends -  just allowed me to be me -  that is to their credit. I have memories of swimming in the ocean at such a young age - that my love for it was so heavily imprinted that my parents would never tell me to follow my doctors's advice.  They encouraged me to push my limits. I finished a half marathon because my i had friends pacing me -experienced runners who gave up the idea of their personal best to allow me to get over a personal hurdle.  And yes, I had a boss who fired me because he said that having epilepsy put his company at risk.  I also had several bosses who looked at me and said - big deal.  Just let me know when you need to rest.  

So yes, I am glad that there is a face to epilepsy - that now people know that it is no longer a hidden condition.  But there are other ways to live through it.  We all have our own stories to tell.  I am grateful that mine turned out differently.  I am glad to present another face to it.  

"

Sunday morning lessons in appreciation

It's so very easy to let a Sunday morning slip away.  To lay in bed so comfortably under the covers,  wrapped in the sheets,  blisssfully letting the morning light drip away.  That was my plan.  I had woken up early  -  but then realized there was no need to and fell easily back into the abyss of dreamless, easy sleep.

And then I was woken up by a loud ringing.  It sounded like a doorbell.  So i jumped out of bed - and nothing.  I decided it must be a sign  that it was simply time to get up.  I made myself a latte - got together a plate of cherries and was ready to get myself on the terrace and start my Sunday ritual of a few minutes of prayer and meditation.  

Then I stopped.  

Sitting on my terrace, just beyond the glass doors was a bird - looking right at me,  he was sitting next to my chair across the riot of bougainvillea.  It was a a beautiful sight.  It was as if he was saying - I've decided to rest here if you don't mind.  So i stayed indoors and let him have my spot on the terrace.  The funny thing was - he kept looking at me - as I was saying my prayers.  In Kabbalah, birds are a symbol of Chesed, or mercy --- and it seemed as if the Light was sending me a companion to share my blessings with this morning.  

Three hours later, my friend is still on the terrace - I've opened the door -  and put a dish of water for him.  He looked at me as if to acknowledge me and has now turned his back and sat down.  He hasn't touched the water.  He's very comfortable - he's looking at the flowers.  The breeze is ruffling his feathers.  He's being very present. And still.  And he's teaching me about appreciation.  

How many times have I sat on the same terrace had a cup of coffee -  and just sat and looked out?  Never.  I've always been out there with a purpose - to tend to my garden, to read a book, to get on a phone call.  But to be still and just appreciate the present moment?  

How many times have I sat with a friend and truly listened and not fiddled with a phone or thought of the next place I needed to be?  

So enjoy my terrace my little friend -  am really happy that you chose to stop and rest here.