What Epilepsy Means to Me: Slideshow

Robert does his part to bring about epilepsy awareness. On Global Day of Epilepsy Awareness (Purple Day) last March, he passed out purple cupcakes.

Robert does his part to bring about epilepsy awareness. On Global Day of Epilepsy Awareness (Purple Day) last March, he passed out purple cupcakes.

I know I’ve been absent – Robert was sick, I was sick, work is crazy busy . . . but on to the good news!  (Even though I wasn’t commenting as much as I would have liked, I was reading and thinking of all of you).

My local paper, The Sacramento Bee, created a gallery called “The Faces of Epilepsy” based on some of the interviews I did on my blog during Epilepsy Awareness Month.

This thrills me no end since I’m sure you’ve heard me say I cannot let Epilepsy Awareness be confined to one month.  This point was made repeatedly throughout November when people would apologize profusely for not being able to participate in the interviews.

Because they were dealing with seizures. Or their child was having breakthrough seizures. Or there were medication issues that needed to be resolved.

Epilepsy does not care what month it is and seizures do not care what a person is doing.  Just this weekend, Robert had a few seizures while in the bathroom getting changed (he has more seizures when he’s fighting a cold or flu – yes, he’s had his flu shot but he still gets sick).  I try to balance his need for privacy and independence with keeping an eye on him at all times so he is safe.  During one seizure, I caught him so he didn’t fall but the other time, I was giving him privacy and he fell against the toilet, giving himself a pretty good raspberry on his back.

Seizures don’t say, “Hey, I’m coming so get to a safe spot, clear your calendar and get comfortable.”

Maybe the unpredictable nature of epilepsy makes me admire those dealing with it all the more.  These people have strength, resilience, persistence and guts.  And they all have to have plans and back up plans and the ability to throw all plans out the window at a moment’s notice.

I am so grateful to everyone who participated in the interviews in November and learned more than I ever could have imagined from each and every one of them.

I’ve gained new friends as well as fellow advocates in our fight against the stigma of epilepsy, in our fight for more education and awareness as well as funding of epilepsy research.

If you have an epilepsy story to share, I want to hear it.  Please email me at [email protected] and I will tell your story.  Your story is important in the fight for epilepsy awareness, education and funding.

Enjoy the slideshow of just a few of the amazing people I was able to interview in November:

Faces of Epilepsy

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

8 thoughts on “What Epilepsy Means to Me: Slideshow

    • Profile photo of TrishTrish Post author

      Thanks, Denise! I was so happy with how the slideshow turned out. Plus, I’ve been getting people submitting their epilepsy story to me — some of whom say they’ve never told their story before. I’m thrilled people are comfortable telling me about their experience with epilepsy as it really cuts through the stigma when we talk about it. Thanks for letting me share my passion here!

      Reply
  1. Profile photo of CHRISTINE

    RobertsSister you are awesome and amazing to be strong and supportive for Robert. You inspire others to do the same. People in families that have loved ones need to step up and take care of them instead of Nursing Homes. That’s my opinion May God bless you & Robert!! XOXOXO

    Reply
    • Profile photo of TrishTrish Post author

      Hi, Christine. Thanks for your support and postive comments. Robert actually does live in a care facility (with 5 other guys) and stays with me on the weekend. Each person’s situation is different and sometimes nursing care is the best option for both the caree and caregiver. Believe me, it was a difficult decision to place Robert in a care facility after he had been able to live independently. Ugh! It was tough but he’s pretty happy and has adapted well. His goal is to spread awareness and education about epilepsy and I’m trying my best to help him do that! :-)

      Reply
  2. Profile photo of ejourneysejourneys

    Beautiful slideshow, Trish — and Yay for the coverage! :D Thanks so much to you and Robert for all your advocacy and outreach.
    I hope everyone is well on the mend from colds and flu.

    Reply
  3. Profile photo of TeresaTeresa

    I just saw this on here! Thank you for featuring me and my mom in the slideshow, in addition to interviewing me. Epilepsy needs more awareness! You and Robert do a great job of doing so.

    Reply

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