It’s Okay to Look

Robert looks different from other people his age. He is 45 years old but uses a walker, he wears a very hard helmet, he drags his right foot and sometimes he trips. He is slow to respond to questions (he’ll get there, he just needs a lot of processing time). He even has seizures (in public! Oh My!). These can involve slumping down in a chair for 20 seconds or could entail falling flat on his back and laying on the floor twitching for a couple of minutes.

When he was in high school, it also usually meant wetting his pants. That was a brutal time for the poor guy. Sometimes kids can be pretty mean spirited to those who are “different.”

When we were kids I don’t really remember Robert being all that different. He did have seizures and was the most hyper kid I knew but he looked like me and my brother (other than the curly hair – still a family mystery). Shopping excursions to the mall almost always included hearing Robert’s name announced over the loudspeaker. “Will the mother of a lost 5-year-old boy with curly hair and dimples please report to security?” I never liked being the center of attention so was mortified whenever this happened. Couldn’t we go to the mall just once and not have our last name blasted over the loudspeaker?

Through the years, Robert had more severe seizures, was on numerous medications to control the seizures and even underwent more than one brain surgery. Robert was well into adulthood before he started to wear a helmet (we finally convinced him his head couldn’t take any more blows). He didn’t start using a walker until a couple of years ago.

Looking different sort of crept up on him. When we go to the mall now, he doesn’t get lost but he does attract attention. I’ve learned to live with the attention being with Robert brings and don’t usually mind it. In fact, I want to educate people about seizures but most adults look away and children, while they have no qualms about looking, are usually scolded by their parents and dragged away. I don’t mind people looking at Robert just because he looks different and actually would prefer if people asked us questions instead of staring and then looking away. I think people are trying to be polite but they usually come across as fearful instead. It must be the helmet that makes people uncomfortable.

Robert’s seizures are unpredictable so he can have them when we are out. I get very angry with the ignorance about seizures and have to remind myself that I have been around them my whole life so they are not weird to me.  I understand they can be frightening to others.

Several years ago, our family was out to lunch and Robert had a seizure in the restaurant and ended up on the floor. (No, we don’t just let Robert fall over. Of course we try to catch him as he goes down but it’s not always possible to do so. When he “goes down” it is quick and without warning. Plus, he’s a big guy and you better make sure you can catch him before attempting it.)

Quite a commotion broke out since someone just landed on the floor. Fries drop to the floor; not people. It’s a bit unexpected during the lunch rush. As Robert lay there and we sit by him, waiting for the seizure to pass so we can finish our sandwiches, I overhear someone say “he’s probably on drugs.”

I can still feel the anger swell up when remembering those words. At the time, I was one of those cartoon characters with steam coming out of their ears. However, I stood up and calmly explained that Robert had epilepsy and was indeed on drugs but they were prescription drugs to help control his seizures.

Well, “calmly” may be a bit of a misrepresentation. I did do a little bit of educating that day, however.

I am happy to answer any questions about epilepsy or helmets or why Robert walks “funny.” It really is okay to ask. It’s okay to look. It’s just not okay to make assumptions about someone and how they look without knowing the facts.

Avatar 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!)

3 thoughts on “It’s Okay to Look

  1. Avatar of DeniseDenise

    Hi Trish–I LOVE this post.

    I often think: We all have a disability, some are just more visible than others.

    I think you just wrote a moving piece that all Trish’s in the world are grateful for.

    Reply
  2. G-J

    Trish, this is a wonderful piece! Everyone needs to be directed to your blog here so more people can read it. And I loved your line, “Fries drop to the floor; not people.”

    Reply
  3. Sharon

    Thank you, Trish, for this wonderful post. Your love for your brother shines through. I agree with Denise. We all have a disability, some are just more visible than others.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>