25 Random Facts About Robert’s Sister (yeah, that’s me)

The other day I posted 25 Random Facts about Robert and promised a few random facts about me too. Random facts in random order. I wonder how many of these are a surprise to my friends and family?

1. When I was 13 I had a pencil thrown at me by a little girl I was babysitting and the lead end was briefly stuck in my eye. (What is it about my family and getting poked in the eye? Obviously, Mom should have made us all wear protective eyewear).

2. I have two younger brothers. Robert is 5 years younger than me, is disabled and has epilepsy. Other Brother is not quite 2 years younger than me and is a very successful partner in an actuarial firm. Robert beats us both at cards.

3. I had heart surgery when I was 18 months old to repair a hole in my heart that I had been born with. My daughter had a similar problem when she was born and had her heart surgery when she was only 2 months old.

4. I still have a few baby teeth and I never got any wisdom teeth. (No comments from the peanut gallery, please). :-)

5. I volunteered at the Suicide Prevention Center when I was 18 years old even though their minimum age to volunteer was 21. I was able to talk my way into the job (if you read my book, you'll know why).

6. During college, I worked for Greenpeace soliciting donations door to door and was yelled at numerous times. My favorite thing yelled at me was “nuke the whales!” People can be crazy!

7. I failed beginning French in college and now worry how I’ll manage to get around when I go to France one of these days.

8. I had two majors in college: Psychology & Peace/War Studies. I thought working at the UN would have been a pretty cool job.

9. In my twenties, I acted in local theater productions and was an extra in a few movies and television shows. It was a blast!

10. Until the 6th grade, I was called Patti. I decided I didn’t like that name any longer so asked everyone to start calling me Tricia. Now it’s just Trish.

11. I really like cows. It may have something to do with the fact I grew up in Nebraska.

12. One of the houses I grew up in was across the street from the famous Boys’ Town farm in Omaha. We could smell the “fertilizer” when the wind shifted.

13. I love making snow angels.

14. I love animals and currently have 2 dogs, 2 cats and an aquatic turtle.

15. I was the oldest and only girl cousin on my dad’s side of the family until I was 12. This meant I wasn’t afraid of boys and could hold my own in a game of touch football.

16. The smoke alarm usually goes off when I cook something. My mom gave me a fire extinguisher as a present once.

Ask and You Shall Receive!

When New Home told me they no longer had television I wondered how Robert was going to fulfill his spiritual needs. Robert is in the habit of watching sermons on television and will actually watch a couple of hours’ worth on Sunday morning if he has the opportunity. He always wears a white dress shirt on Sunday, keeps his Bible close to him along with a pad of paper and pen so he can write down each verse referenced in the sermon. Robert does this whether he is watching a sermon on television, in person or at a funeral. He has several pads of paper filled with Bible verse references.

Sometimes I can get too caught up in the antics of New Home and end up being a little down in the dumps or extremely frustrated with them. New Home promised weeks ago to reinstate television and I keep hearing “it’ll be any day now” but nothing seems to be happening. The residents are still watching the same movies over and over again (luckily, the DVD player works). Robert had a few movies of his own that he shared with the others. Still, how many times can you watch Annie?

This latest problem of not having television is less of a problem now thanks to the generosity of a few churches.

At a recent meeting with New Home, it was suggested that churches might be willing to donate a DVD of their sermons to Robert. Excellent idea! I researched several of the big name churches who broadcast on Sunday to see if they had an avenue to request a donation of a DVD or just had an email address listed on their website. A few churches didn’t have a person to email directly but had a form to complete in order to ask a question or make a request. Many of these links didn’t work which was a little startling. (Hopefully, someone who is in dire straights doesn’t decide to email these particular churches. “I’m so sorry but God’s internet isn’t working right now!”).

To those I could get through to, I requested a DVD of a sermon and promised a mention on my blog if they were willing to donate the DVD to Robert. I explained his situation and asked for whatever they could send. One church turned me down and instead asked me for a donation.

Not letting this discourage me, I sent off a few more emails. Two churches responded positively and have already sent a few gifts to Robert! The Joel Osteen Ministries of Lakewood Church in Texas, sent Robert a DVD entitled, “You are an Overcomer.” Boy, isn’t that the truth! I told Robert he was sent a DVD but haven’t given it to him yet. He gave his standard understated response of “That’s nice” when I told him about it. He may not be able to ooze enthusiasm but he will watch it intently (and probably several times), Bible beside him with notepad in hand.

InTouch Ministries also generously sent Robert two CDs with sermons by Dr. Charles Stanley. When Robert visits us, he watches Dr. Stanley’s program so will really appreciate having these CDs to listen to.

New Home may be on week 4 and counting of trying to get their television back on but while they move at a snail’s pace to get the necessary approvals and wait for the cable guy, a few churches have come to Robert’s rescue and made him very happy. For that, I am extremely grateful!

25 Random Things About Robert

One of my favorite bloggers who is also an amazingly talented artist, Franziska San Pedro,  recently created a “25 Random Things About Me” post.  It was entertaining (mostly because it involved donkeys), it was very open (read it and you’ll see what I mean), and it was enlightening. I learned so much about this delightfully exuberant person in just five minutes!

I’d love for you to know more about Robert and this list is the perfect way to do that. (I promise to create something similar about myself but for now, this is all about Robert).

1. Robert stuck a fork in his eye when he was 6 or 7. Other Brother, Robert and I were having a picnic in our backyard and Robert was goofing around and stuck himself with a fork. He thought the eye patch he got from the ER was pretty cool! (Don’t worry, there wasn’t any permanent damage).

2. Robert’s favorite color is blue.

3. Robert’s favorite television shows are Wheel of Fortune and Jeopardy. Of the two, he likes Jeopardy the best.

4. Robert is very committed to his faith and considers himself Baptist. I know of no other Baptists in our family.

5. Robert has had epilepsy his entire life.

6. When living independently, Robert sent money to someone in Jamaica because they called him and asked him for it. I am still wishing for Karmic justice on this person for taking advantage of a disabled person.

7. As a child, Robert loved to play with LEGOs.

8. Robert can tell you all about being awake during his brain surgery in 1990 and how happy the surgeon was with him and his progress afterwards. He usually can’t remember what he had for lunch.

9. Robert had a seizure while in a swimming pool when he was 15. After being pulled out, he was in a coma for a few days and says God talked to him telling him it wasn’t his time yet. It certainly wasn’t!

10. Robert’s favorite meal is a cheeseburger and fries with Rocky Road ice cream for dessert.

11. Robert says he can sometimes fight off seizures. I believe him.

12. Robert’s medications currently include Depakote, Clonazepam and Zonisamide (for seizure control) and Levocarnitine to improve liver function.

13. When Robert was little he loved to carry around a blanket (the kind with the silk on the edge) and just rub the silk. It was very soothing for him.

14. Robert always wears button down, dress shirts. Preferably blue.

15. Robert loves 7-Up and is never without a bottle of it.

16. Robert can’t drink caffeine because it may trigger a seizure but he likes decaf coffee.

17. Robert enjoys doing Word Search puzzles.

18. When in the car or riding the bus home from his Day Program, Robert counts school buses and “diesel trucks.”

19. My parents took Robert to Switzerland when he was 8 to see a renowned neurosurgeon to see if he could cure Robert’s epilepsy with surgery. The doctor couldn’t do anything.

20. Robert’s best friend in elementary school was run over by a bus in our neighborhood. It was a horrible, awful thing.

21. Robert lived with a woman he considered to be his wife for almost twenty years. She also had epilepsy. When Robert could no longer live on his own and I moved him to a facility near me, she broke up with him.

22. Robert loves jewelry (rings, watch, bracelet, necklace with a cross) and wants everything to be 14-carat gold.

23. Robert is very routine-oriented, bordering on OCD.

24. Robert absolutely loves to play Kings Corner (a card game) and beats me 99% of the time.

25. Robert is the only one in the family with curly hair. I always wondered what the mailman looked like. :-)

I'd love to hear a few random things about you if you'd like to share in the comment section!

This is a Seizure

I have been trying to capture one of Robert’s seizures on video for a while. I thought it would be one way to raise awareness about seizures and make them (hopefully) a little less scary. I kept waiting for the just the right opportunity to get the “perfect” seizure (which, to me, meant Robert was sitting down, I was able to capture all of it, the surroundings were very calm and serene, my house wasn’t a mess, nothing got broke and no one got hurt).

That’s not how seizures happen. Seizures come on unexpectedly and sometimes things get messy. Dinner plates almost end up on the floor, for example.

Unless I have a camera trained on Robert 24/7, I can’t capture the beginning of a seizure. A young woman  who lives with epilepsy and is on a mission to raise awareness about seizures and epilepsy actually did this by setting up a webcam while she slept which captured her seizures. I commend her for her bravery and for the inspiring way she is living her life in spite of intractable epilepsy.

Robert’s seizures are called Complex Partial Seizures. He doesn’t convulse but he sometimes twitches his right hand or tugs at his clothes. If he has one while standing, he falls backwards (which is why he wears his super deluxe helmet). One time, he yelled during a seizure but what he was yelling about wasn’t clear and he had no memory of doing it. He actually rarely remembers having a seizure unless he wakes up on the floor. Only then will he admit to having a seizure. Otherwise, his standard answer to “how are you, Robert?” is “I’m doing well. No seizures.” There’s no point in correcting him since it makes him happy to believe he hasn’t had seizures in a long while. I don’t see the harm.

I finally let go of the idea of trying to film a seizure in the perfect setting and decided to post a short video of him having a seizure when he was at our house this past weekend. My husband and I were sitting down to dinner with Robert and Robert started to say grace, as he does before each meal. He prays he doesn’t have any more seizures and I think he prays that I go to church more often (he mumbles, so it’s hard to be sure). God, apparently, is ignoring his requests on all fronts.

The prayer was interrupted by a seizure.

The video shows Robert, hands clasped in prayer, head to one side, having a seizure. It shows a dinner of a lot of pasta and canned peaches – don’t judge (to add to this nutritious meal, chocolate ice cream was on the menu for dessert). The video also shows me running to catch Robert’s dinner plate so it doesn’t end up on the floor. Seizures are messy and unexpected and that’s just the way it is.

One thing I learned at the neurologist’s office yesterday is that once Robert is able to respond verbally, then the seizure is over even though he is still in a state of confusion (you’ll see that too on the video). I thought the confusion was a continuation of the seizure since he is pretty out of it. I’m still learning about seizures and epilepsy and hope this helps you learn a bit more about them (and us) too.

By the way, Robert said it was okay to post this.