Over the years, I’ve learned of my seizure triggers. One of them is simply being too tired and not getting enough rest. Because of this, when I need it, and I can, I rest. I might not always be sleeping, but relaxing even for 10-20 minutes can do a world of good.

People think it’s weird that I carry blankets in my car, but they have come in handy from an impromptu stop at a beach to taking a nap in a park. Most often I’m just taking a rest in my car, but I’ve slept in the chair at my dance studio, on the bus, and even in a restaurant booth along with many other locations over the years.

Today was one of those days where I just needed to rest.

One of Those Days

Instead of rolling out of bed around 8 AM (my ideal wake-up time), the alarm was going off at 4:30 AM. Why? Because at 6:35 I was going to be on KCAA with Erin, Tobin, and Todd Brinker for their morning talk show—On the Brink! Over the years, I’ve learned it’s much more fun to be live, than to call in to the radio.

After the interview, I went to my monthly NAWBO-IE meeting to indulge in a panel discussion on marketing with Kim Lewis from Creative By Design, Margaret Brown from Socialize LA, and Allison Gutierriez from Jack Nadel.

Afterwards, I clearly needed to rest. I pulled my car into a shady parking spot, rolled down the windows, and leaned back to rest. Suddenly, I heard “Meghan, are you ok?” It was Joan from Jazzy Pen Communications wanting to make sure I hadn’t had a seizure.

When Sleeping Isn’t Really Resting

If you see me resting, 99.99% of the time, everything is ok.  Just over 20 years ago, though, I was on a plane and woke up in an emergency room.

There was no emergency landing. There was no ambulance waiting for me when we pulled up to the gate.

I was traveling alone and they simply thought I was sleeping. When the flight attendant from Continental (now United) couldn’t wake me up, they knew something was wrong and called for help.

It turns out I had a major seizure, worse than I’ve ever had before. The last thing I remember was looking out the plane enjoying the view of the clouds in the sky. I found out I had another seizure trigger—flickering lights as the sunlight was flickering between the propeller blades.

Thank You!

To the crew that day, thank you for taking care of me—and I still wonder how all my belongings made it to the hospital.

And to Joan, thanks again for checking up on me today—just in case!

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Today is February 8th, the 2nd Monday of February, and the 2nd time we celebrate International Epilepsy Day.  Epilepsy is a condition that’s been around for millennia dating back to the Code of Hammurabi over 4000 years ago.  According to the Code of Hammurabi, if a slave was sold who had epilepsy, or even developed epilepsy, the original owner had to take them back and give back their money.

Even in the 20th century, epilepsy colonies existed as did eugenics laws.  These laws weren’t just for people with epilepsy, but also included people with other disabilities, alcoholics, and even paupers.  The laws varied by state.  I happened upon the eugenics laws when researching Craig Colony for Epileptics (which I’ll be writing about in future blogs.)  These eugenics laws sometimes forced people to be sterilized or denied them the right of marriage.  People with epilepsy could be classified as imbeciles, feeble-minded, or idiots.  In fact, a famous Supreme Court case, Buck v. Bell, tells the story of Carrie Buck and her forced sterilization.  Interested in learning more, read this article from Trevor Burrus I read just last week.

Epilepsy Today

Today there are no colonies and no eugenics laws.  Many people with epilepsy live everyday lives–working, driving, enjoying time with their family, following their passions.  At the same time, there are many who can’t enjoy life, who have hundreds of seizures a day, who can’t get control of their seizures and lose their driving privileges and/or job.  Epilepsy is a hidden disorder, one of many invisible disabilities.

Supporting International Epilepsy Day at Epilepsy Awareness Day at Disneyland!

I never lost my job–well, I was laid off, but that was because of the economy, and luckily my employers made accommodations over the years as needed, even changing my schedule so I could participate in a clinical trial when nothing else worked.  I did lose my license, but made accommodations–bike, bus, carpool, walk.  I’m glad I have my license again, but when I was sick last month, I took myself off the street as a precaution using Uber to get back from the doctor’s.  I’ve had to deal with numerous side effects from bone/joint problems to rashes to excessive weight loss/gain.  Of course, my life with epilepsy cannot be compared to anyone else’s.  We might have similarities, but we all have our own challenges.

Even though things are better overall for people with epilepsy, it is still a challenge.  It is still a disability.  It is still misunderstood and people with epilepsy still face a stigma and discrimination.  In fact, 42% of children with epilepsy are likely to be bullied according to this study.  And even with all the new treatments available, only 2/3 of people with epilepsy gain full or partial control of their seizures.

What Can You Do for International Epilepsy Day?

• Check out the International Epilepsy Day site for more information.
• Get your purple on.
• Post your selfie on social media with #epilepsyday.
• Share an epilepsy truth from Epilepsy Education Everywhere‘s 24 Epilepsy Truths Facebook campaign.
• Learn more about epilepsy and don’t be afraid to ask questions.
• Mark your calendar for the 2nd Monday of each February to celebrate epilepsy worldwide!

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Yes, that was the question on my mind today.  I’ve had my license for over 15 years now after finally going a year seizure-free and getting the doctor’s permission.  Even so, I still have to “police” myself as there are times where it’s best I don’t drive.

Today was one of those days.  I’d been sick for a few days…one of those cruddy colds that just wouldn’t go away.  When I’m sick, and haven’t gotten the sleep I need, the possibility of having a seizure increases so I decided it was best for me not to drive.

What Were My Options?

I had a few options:

• Get a ride with my boyfriend.
• Reschedule my appointment.
• Take the bus.

As Frank had the late shift, he could take me to Kaiser, but he couldn’t bring me home.  The RTA stop is approximately a mile from the hospital and 1/2 mile from my house.  Usually this walk isn’t an issue, but I was tiring easily.  I called to reschedule only to find out that I couldn’t get in to see my doctor for almost 3 weeks and as I was in pain (not related to the cold,) I decided best not to cancel.

Somewhere throughout this process, I remembered Uber.  As Frank could take me to Kaiser, I decided today was the day I would try Uber for the first time!

Using Uber

That afternoon, I downloaded the Uber app and set up my account.  I also posted on Facebook to see what friends had tried Uber or something similar like Lyft.  A few had, in fact one told me to check for promo deals.  I found a deal giving me $22 off my first ride and put in the promo code on my app.

When it was time to leave, I opened the app, put in my location/destination, and within seconds saw that my ride was on the way.  Not only did Syed’s name and picture show up on my screen, but so did the make, model, and license plate of his car.  When he arrived, he had an Uber sticker in his window.

His car was super clean–almost as if it was new.  We chatted on the ride home.  Unlike a taxi, nothing separated the driver from the passengers making it a more friendly experience.  He offered me some water and I got to ride in the front seat. About 25 minutes after I made my request, we were pulling into my driveway.  Syed closed out the ride, we said our goodbyes, and I came in to rest.

Nothing to sign, no papers, the app took care of it all!

Thanks Uber and Syed for helping me out today.

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Although somewhat relieved learning that some colleagues were ok, I was still on edge.  No matter what, life had changed.  The shooting at the Inland Regional Center was impacting many near and far.

The IRC serves over 31,000 individuals including those with developmental disabilities, epilepsy, autism, and cerebral palsy.  How was this affecting them and their services?  Were any of them onsite during the attack?

Events were being cancelled, meetings rescheduled, schools and businesses staying closed or reopening, and the San Bernardino County offices were down to essential personnel until Monday.  At first, IRC was to reopen on Monday, but dates kept changing and now are set after the holidays to allow for a thorough investigation.  Other regional centers had closed temporarily as a result of this tragedy.

One new event, though, had just been scheduled…a candlelight vigil at the Inland Empire 66ers stadium.

Changing Stories

Over the last 24 hours, stories had changed so many times.  From 1-3 gunmen initially to the 3rd gunman running loose in San Bernardino that afternoon.  It was later determined that he was not involved with the event.  And there was one question the police wouldn’t answer–was this an act of terrorism?  By Friday, they did deem the IRC shooting as an act of terrorism.

I had initially heard that the gunmen had gone to the 2nd floor making me extremely worried for my friends who worked up there.  Later, I learned that the shooting was actually at a holiday party for the Department of Public Health in the conference room on the 1st floor.  The lingering question remained, who were the 14 individuals who were no longer with us?  Did I know any of them?

No matter what, friends, family, and co-workers had lost those close to them.  Life had changed.

Inland Regional Center Victim Names Get Released

Around 11 am, we learned of one of the victims–Nicholas Thalasinos.  Soon after, Mike Wetzel‘s name was released.

As the day went on, I looked for more announcements.  I still caught myself pacing and having problems concentrating.  I was told by a colleague that all IRC staff were ok.  I debated going to the Mingle Bells event as planned, or going to the candlelight vigil, but I just wasn’t ready to go to San Bernardino yet.

I left the house not knowing who all had been lost.  Perhaps by the 11 pm news, they’d have all the names of the victims.  I had just parked to go to Mingle Bells when I got a message from a friend about a posting on the coroner’s website.  All the victim’s names had been released.

Sitting in my car, I pulled up the list of the 14 whose lives were lost, whose families lives had been changed.  Most names I didn’t recognize, but I knew I’d have to see a picture to know for sure.  One name stuck out though, Daniel Kaufman, from the coffee shop.  I’d been worried about Daniel and the other coffee shop employees.  Of course, I didn’t know his last name.  I did a quick search, got a picture, and it was him.

I cried.  I called my boyfriend.  I called my parents.  And, I called a couple friends who might know Daniel.  One did.

Mission Inn Festival of Lights as seen from Mingle Bells

I had to recompose myself to go into Mingle Bells.  It was held next to the Mission Inn during their Festival of Lights.  I saw changes including road closures and increased security.  This year, it was a mixture of celebration and remembrance as others also knew people involved.  Even so, they had decided to bring people together that evening in lieu of canceling the event.  Although tears were shed, there was much laughter too.  Thank you!

The post The Day After…Feeling the Impact from the IRC Shooting appeared first on What's on Meghan's Mind.

I woke up, ate breakfast, and watched some TV…because it was just another Wednesday.

I opened my laptop, checked email, checked Facebook…because it was just another Wednesday.

I started doing some paperwork coming due for Epilepsy Education Everywhere…because it was just another Wednesday.

My boyfriend slept in late.  He had worked overtime and it was his day off…because it was just another Wednesday.

He woke up, we kissed, and he started checking his messages…because it was just another Wednesday.

He told me I’d missed a shooting in San Bernardino, but I thought he’d meant a shooting on Tuesday.  I’d just been in San Bernardino on Tuesday for the Give Big San Bernardino event in conjunction with Giving Tuesday.  Minutes later, I learned he was talking about the active shooter at the Inland Regional Center.

It was no longer just another Wednesday.

Active Shooter at the Inland Regional Center

Life was suddenly turned upside down as Frank showed me the video on his phone.  Besides knowing people who work at the IRC, I co-chair a monthly meeting in their conference room, and have had many a meeting in the coffee room next door.

I immediately emailed those I knew at the IRC–well, those whose emails I had.  I knew they couldn’t respond, at least not right away, but I still had to send it.  I emailed others who might hear from them.  I called my parents to let them know we were ok.

Then, it started…the emails, phone calls, text messages, and Facebook messages…coming in from around the community and the country.  Calls from friends, family, business colleagues, customers with questions and concerns.  Was I ok?  Were Frank and I ok?  Was I at IRC that day?  Did I have any news about who was injured?

I was pacing.  I couldn’t concentrate.  A few hours later, I caught up with the calls and callbacks.

I could remember two other times I felt this helpless–9/11 and the Flood of ’97 in Fort Collins, CO.  I had to do something.  Frank and I decided to do a simple project–cleaning and organizing the DVDs–to keep us busy.

Of course, it was no longer just another Wednesday.

The Breaking News

Every couple of hours we’d break and check the latest news online.  A couple times we caught a press conference live.

The news came out that they had killed Syed Farook and Tashfeen Malik, but a third gunman had escaped and that area was on lockdown.  Pictures of the car all shot up were plastered all over the news.  The neighborhood looked familiar, and then they gave the street names.  A friend’s family lives less than 1/2 block from the shooting.  I texted them right away…but didn’t hear back for hours.

Names of the victims weren’t being released.  I eventually started searching the media for names, but some people I only knew by their first name.  I found one name and then another in stories of how family members were reunited.  Two were ok, my friend’s family was ok, but there were still others I hadn’t heard anything about.

I was worried, but I was also a little bit relieved.  Starting to hear folks were ok, at least physically, raised my hopes that others were ok.  No matter what, people’s lives had changed significantly.

This was no longer just another Wednesday.

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Almost 25 years ago, Representative Tony Coelho and many other representatives voted to pass the Americans with Disabilities Act.  On 7/26/1990, this bill was signed by President Bush.

This Sunday, we celebrate the 25th anniversary of the signing of the ADA.

I have use of all my limbs.  I can see.  I can walk.  I can hear.  Growing up, I thought someone who was disabled had something major happen to them in which they couldn’t perform their daily functions regularly.  Being diagnosed with epilepsy was definitely a major life-changing experience so, am I disabled?

The Americans with Disabilities Act even covers hidden disabilities such as epilepsy.  Disabilities aren’t always visible as many people know.

Epilepsy is a chronic condition that I have had for 29 years.  I am lucky compared to many others with epilepsy in that my seizures are under control, but it hasn’t always been this way.

• I had my license revoked.
• I have dealt with discrimination.
• I have dealt with numerous side effects that have affected my ability to work at times.
• When I graduated, I couldn’t get health insurance to cover my epilepsy.
• My medical expenses have always been a major expense.

Again, am I disabled?  Technically, yes.

How has the ADA helped me?

• I was able to qualify for alternative transportation options when I was unable to drive.
• My work made reasonable accommodations for me as needed.
  • Changed my work schedule so I could participate in a clinical trial.
  • Allowed me to take a nap following a seizure to recover.
  • Enabled me to take longer breaks and a shorter lunch when my appetite was affected by my medication.
• I was able to get an annual disabled bus pass for a MUCH cheaper rate helping me financially.

A special thanks to the staff at Morgan Library from Colorado State University for being so accommodating during my “rough years.”

Celebrate the ADA!

So, how am I going to celebrate the 25th anniversary of such an event…well, there are various events going on throughout the nation.  Locally, we have at least two events going on at both Dodger Stadium and the Inland Empire 66ers.  At Dodger Stadium, they want to break the Guinness World Record for the most moving wheelchairs in a line.  The prior record was set 5 years ago at the 20th Anniversary ADA Celebration at Dodger Stadium.

If time and traffic permit, I just might make both ADA celebrations…or I might just enjoy my freedom in a drive up the coast!

Check to see what is going on in your area and also, check out the ADA Anniversary Pledge.

Remember, don’t celebrate your disability, celebrate your abilities!

Meghan

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Even if you don’t live in California, you’ve probably heard that we are in a major drought.  Let’s just say, water conservation is on my mind.

It was great to have not just one, but two days of rain this weekend.  Even though it got a little humid (something I was used to growing up in the South), I still had the door open so I could enjoy the sounds of the rain.  The sound of the rain won out over listening to some of my favorite songs on Pandora.  I was busy doing your typical weekend housework–cleaning, laundry, etc., but this time I added one more, the Bucket Brigade.

I have different buckets and containers that I’ve saved from Home Depot, Fresh Step, Folgers and Nesquik (yes, I’m a kid-at-heart who enjoys chocolate milk with her breakfast!)  Frank and I took all of these containers and strategically placed them to catch the runoff, or gray water, from the roof for our bucket brigade.  As they filled up, we put them in the large green waste bin from Waste Management.

Why is water conservation important?

We are in a drought and need every bit of water we can.  A couple months ago, I was able to tour a local Eastern Municipal Water District plant.  That day, one of their board members informed our group that California has less than a year’s worth of water reserves.  YIKES!

What gave me this idea?  A few months ago I was visiting my cousins in Sacramento.  While there, we discussed not just the drought, but ways to conserve water.  This included putting a bucket in the shower to catch extra water.

What to do with your gray water?

Of course, you can’t use gray water for everything.  My cousins are using it to water their houseplants.   As I have no houseplants, I reuse it on the roses and other garden plants in lieu of the sprinkler.

I’ve heard people use gray water to wash their cars or even to flush their toilets.  Of course, we can thank Mother Nature for washing the cars for us that day!  So, what other ideas do you have for gray water, or for water conservation?

And, some friends are talking about getting a cistern to save rainwater in the future.  I’d love to hear what other rain-catching ideas you have!

Keep on conserving that water!

Meghan

P.S.  I learned last month when saving water to not let it sit too long or the mosquitoes start buzzing around.   This option is for short-term storage only and if you get a cistern, make sure not to have it near any entryways.

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The other night, Frank and I and enjoyed the movie Selma, based around the civil rights marches from Selma to Montgomery in 1965.  I spent most of my childhood in the Carolinas, but it wasn’t until 2008 that I traveled through Alabama on a road trip.

While standing inside the Birmingham Civil Rights Institute listening to a recording of “I Have A Dream,” I looked across the street at a church.  I soon realized I was looking at the 16^th Street Baptist Church—the site where 4 African-American girls were killed when that church got bombed.  I remember getting goosebumps just being surrounded by history, although an unfortunate part of our history.

Across the street, a park exists which has various memorials back to the Civil Rights Movement.  A few blocks away, at the Alabama Jazz Hall of Fame, once again looking through a window, I was reminded of how much segregation was an issue in our country as the tour guide pointed out the Masonic Temple across the street.  Etched in marble on this building was the phrase “Colored Masonic Temple.”  Reminders of that era will clearly remain throughout time.

Memories

Watching Selma brought back these vivid memories as opening scenes showed various highlights from the civil rights era including 4 young girls walking down the stairwell of a church when it got bombed.  Even though I didn’t make it to Selma, it is on my list of places to go.  Perhaps I’ll make it when they reenact the march!

From Rosa Parks to Martin Luther King, Jr., to many others whose names will never be known, thank you for paving the way for future generations!  For some basic information about the Selma to Montgomery marches, check the Voting Rights Act of 1965.

What significant historical events have affected your life? Please share your story in the comment box below.

Meghan

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Every day I see people talking on phones.  Chances are you’ve had many a phone conversation yourself!

How about being on the phone, but not being able to talk?

Well, for me, that call was on a cool Fall evening in 1986.  I was in Wisconsin in my dorm room at Marquette.  My friend was in her dorm room in Virginia.

I don’t remember exactly what happened, but suddenly, I was unable to talk to her.  I don’t even remember if I was sitting or standing.

Remember, back in 1986 only a few people had cell phones or cordless phones.  Most of us were using phones that kept us attached to the wall.  And there were no plans with unlimited minutes each month.  We had to pay for each long distance call per minute.

Now even though I couldn’t talk, she stayed on the phone with me.  Eventually, I was able to communicate and remember her asking me what happened.  I couldn’t tell her because I simply didn’t know.

Let’s just say, both of us were scared by what had happened.  She made me promise to go see the doctor the next day.  When I went to the campus health care, the doctor had her concerns and wanted me to go see a neurologist.

The Start of a New Journey

That phone call was my first known seizure and the start of a new journey in my life which has led me here today.  I’ve faced many challenges and do admit, sometimes I wonder where my life would have gone had I not had epilepsy along with all the ups and downs affiliated with it.  Of course, without that journey, I never would have started Epilepsy Education Everywhere or be helping people with epilepsy as much as I am today.

Some things are just meant to be!

What, in your life, has happened to you that changed everything for you? Please share your story in the comment box below.

Meghan

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What if you were getting judged while speaking?

What if whether or not you graduated from high school depended on your Senior Project?

Today I had the pleasure of being a community judge at Valley View High School for the Senior Oral Boards.   VVHS Seniors are required to pick a thesis, research it, and do a 25 hour community project.   Then, they have to write a report, put together a binder, make a PowerPoint presentation, and do an oral presentation on what they learned.

I heard seven students covering topics from bullying to building self-esteem to scuba diving.  One student even made a solar panel as his project!  Each project was intriguing in its own way.

Why should a school have oral boards?

• Give students the chance to:
  • Research a career opportunity
  • Follow a passion
  • Try something they haven’t tried before
• Give students practical experience for the future including:
  • Public speaking practice
  • Technological experience with Powerpoint
  • Research experience

I remembered how scared I was when preparing for the oral boards for my Master’s Degree (and how happy I was when they cancelled them!)

Thank you to Mr. Harris, Mr. Harrer, and all the teachers who make this program possible!

And to all the seniors, at VVHS and elsewhere, congratulations on your graduation and good luck in all your future endeavours!

Share your experiences with public speaking. How do you feel about them?

Meghan

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