Monday, November 21, 2016

Epilepsy Awareness Month – Follow-up Interview with Leslie

Get ready for my soapbox. You know it’s coming.

Graphic provided by
Epilepsy Foundation of Greater LA
Every year during November I work to spread awareness of epilepsy and to tell the stories of people with epilepsy or their caregivers. Usually, around the midway point, I rant and rave because there are so many good people dealing with such crap due to epilepsy not being controlled or medications causing damage, and my frustration boils over!

We need a cure. Simple as that! Leslie, Robert and everyone else deserve nothing less.  

The follow-up interviews tear at my heart and Leslie is one who has held a special place in my heart since her last interview.  

Leslie was kind enough to participate in the Epilepsy Awareness Month interviews in November 2012 and her story broke my heart and angered me all at once. Leslie’s story is so compelling that it was told in two parts. (You can read Part One and Part Two to learn more about Leslie.)

Leslie is one of 50 million people worldwide who live with epilepsy. She is also, unfortunately, someone who has experienced first-hand the misconceptions and stigma that often comes with having epilepsy. (Yes! That still happens!)

Leslie’s seizures are uncontrolled which is a fact of life for one-third of those with epilepsy (Robert is in that group as well). Leslie deals with depression along with her epilepsy (a common occurrence) yet soldiers on and has hope for the future.

She perseveres and deals with what is thrown at her – even when it is horrific and crappy and awful.

I admire Leslie’s strength and her willingness to throw others a lifeline and, frankly, to not give up even when that option is very, very tempting.

Robert’s Sister:   I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

I first developed epilepsy in 1974, when I was a 17 year old junior in high school. As a result of this tremendous life change, I lost most of my friends, and most of the faculty avoided me. The majority of people believed I was either mentally ill or possessed. That was the thinking in the 70's. My family didn't talk much about it. I was expected to just take my medication and get on with things.

After a seizure free year, I was weaned off medications and then had another seizure, resulting in a black eye. That's when I first lied and said I'd walked into a door because it did look like someone had punched me. Years later, my ophthalmologist found a severely detached retina, the first in a journey of medical interventions for various injuries, which I still suffer to his day.

Unfortunately, my epilepsy has never been fully controlled although my husband and I were blessed with a healthy baby daughter in 1995.

Robert’s Sister: What is the most significant change in your life since our last interview?

Aside from my increasing number of seizures, which we try to take in stride, the biggest change has been in our daughter. She has graduated from homeschooling (yes, you CAN homeschool as a parent with seizures) and is maintaining an A average in biology in community college. She travels the world independently (her last trip was from the USA to Australia, where she would like to complete her education.)

I suppose one could say my biggest change would be a diagnosis of Conversion Disorder, to which I say, "Just add it to the pile." My psychiatrist and I are currently exploring why I feel guilty for everything. I have a suspicion it's tied to all the things I cannot do because of the seizures.

It's funny – I keep getting an image of a woman who ran a marathon despite having multiple seizures. Why don't I do that? Oh yeah, I'd break multiple bones. But still . . .

Robert’s Sister: Has the treatment changed for you?

Drugs, drugs and more drugs. Because I have absence, complex partial, simple partial, and occasional tonic clonic seizures, I'm on a cocktail of multiple medications. In addition, I'm seeing a psychiatrist for Conversion Disorder which started after a violent crime was committed against someone I love. (I cannot go into more detail regarding the crime because it has not gone to trial yet.)

Conversion Disorder also causes seizures, but for psychiatric, not neurological, reasons. In addition to the seizures, I also feel very depressed, so I am also being treated for that, both with medication and talk therapy.

My husband and I are currently looking into medical marijuana since both surgery and implantable devices have been ruled out. I am not an advocate nor against the use of medical marijuana; my theory has always been: if it works for you, go for it.

Robert’s Sister:  What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?


I have more trouble with recall of memories and words. I have time lapses more often and, for those of you who also experience this, it means that often strangers have to fill in the blanks. Who are these people, and can they be trusted? I don't know. It's one of the more frustrating parts of this disorder. 

I fall down more often, due to seizures and lack of balance. Right now I'm using a walker, which I'm determined to get rid of soon. I fell into the car, an accident I don't remember (except for telling my poor husband to stop pulling on my leg), and have zero memory of the three medics who inched me out, getting to the hospital, nothing until I was in ER. I truly hate losing these patches of time.

Since we talked last, I have been placed on anti-depressants, which have helped some, but I am becoming more emotional, probably due to my loved one being sexually assaulted.

Robert’s Sister: What caregiving help do you use?

In general, my husband (who I would compare to Trish or her husband Richard). And, believe it or not, I use Robert and his "excellent" attitude. If I'm injured, I use a caregiving service. If I have no balance, I use my bed (lol).

I also see a see a psychiatrist (who is also a neurologist) weekly to work on my Conversion Disorder. This disorder turns emotions into seizures. I was diagnosed with this a few months ago, along with the epilepsy, and we are hoping successful treatment will cut the seizures in half. 

I urge anyone who receives an odd sounding diagnosis to get a second, third, even fourth opinion, plus read up on the diagnosis. Initially, I will admit feeling offended. The more I learned about it, however, the more it turned out to be the way the doctor presented it than my reaction to it.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?

Both. How is that possible? On the seizure front, I have many more, and different kinds of seizures, most of which are not responding to treatment. And I have a new diagnosis in addition to epilepsy: Conversion Disorder, which is a psychiatric disorder that causes seizures. That part has become worse.

What has become better is that my neurologist was able to diagnose the Conversion Disorder, and my internist was able to refer me to an excellent psychiatrist. You need to be able to "click" with your therapist, so don't hesitate to shop around. I anticipate things will get worse, then better, as I work with her, and I will need less medication. I see the future as much better, so all I have to do is hang on.

Robert’s Sister:  What has been your favorite moment these last four years? 

Definitely when my husband and I traveled to Ohio from California to help celebrate the birthday of an Internet friend. We met a total of four Internet friends in all, including the birthday "girl's" dog, who took a liking to me. We played the game Taboo, which was great fun, and went out for a lovely dinner for her birthday. I did miss some of the fun when I had to nap in order to avoid having a seizure, but it was a small price to pay.

Robert’s Sister: What do you see for yourself in the next four years?

I see the Conversion Disorder being successfully treated and the seizures being cut more than in half. I hope, of course, they will be gone, but since I've had them since 1974, a reduction would be nice. Then I would be able to do volunteer work somewhere, be in better physical shape, and perhaps travel some with my hubby. I would have a reduction in medication, better cognitive skills, and regain my ability to crochet.

That would all be a dream.

Robert’s Sister:  Is there anything else you want to say?

Don't give up.

As I read that, it sounds nuts, coming from someone who has wanted to give up so many times. But if you can think of one, just one person who would miss you, that is reason enough to keep going. If there is one, just one person you can call, no matter where he or she is, who she is whom you can talk to, call that person. If there is no one, call your doctor. If you’re not comfortable talking with you doctor, get a therapist. Depression is very common among people with seizure disorders. Or email Trish ( so she can put you in touch with someone. Or call suicide prevention (phone number: (800) 273-8255). Or 911. You can always reach out. And you are always worth it. Always.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.

Rather than joining a group, I would I would urge everyone to follow or friend Trish Hughes Kreis and her husband, Richard. Trish writes mainly on epilepsy and caregiving, while Richard writes regarding many other subjects of interest to us all. If anything else catches your eye, by all means join it. You can always bow out.

I am inspired by Leslie and every single person I have interviewed this month. Each story is unique but the drive to fight and to find a way to stop the seizures is so very strong. My heart breaks with every one of them as they struggle through the seizures, the medications, the crap life throws at them.

And yet . . . what I see from them is strength, resilience, perseverance, tenacity. These are the qualities of those with epilepsy. These people do not give up.

We have to honor these people and not give up until we find a cure.

Nothing short of a cure is acceptable.

Leslie, I want your dream to come true.


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