Monthly Archives: March 2015

TBI or TMI…..Huh!

When my friend, Lisa fell down a flight of stairs and suffered a traumatic brain injury almost six years ago, those of us in her inner circle, including Lisa, were completely unfamiliar with the rabbit hole we were entering.

Eventually, as we learned to navigate the medical system, the caregiver system, and the devastating financial consequences of just such a trauma, many in the inner circle, including Lisa became less and less cognizant of the fact that she continued to suffer from a TBI and that the long term ramifications were unknown and ongoing.

Because Lisa is an extremely lucky gal and has brilliantly navigated these shark-infested waters of unknown medical complications, many people, even in the medical field, and including Lisa, would take for granted that months and years into this recovery she was just fine.

So we would go to her neurologist, or neurosurgeon and they would tell her that this recovery takes time. And she would say, “but i feel fine!” Then we would go to the grocery store and the price of oranges would be higher, or they would be out of her favorite toilet paper and she would tear up. And I would tell her, “it’s okay, it’s the brain injury.”

And so I told her, ” it’s okay to tell people you have a brain injury. In fact, when you are interviewed by Social Security, or your family doctor, you need to tell them that things like that just happened  in the grocery store, and it takes you unaware. That’s the brain injury.”

We would be out with our friends, and Lisa would either just stop engaging or step out of the restaurant. The over stimulation was too much for her. At first, we all thought she was being rude, only interested in conversations that were about her, (because she always jokes that oh, this isn’t about me?), but then we realized, then SHE realized that she just had to go rest, her day was overwhelming her quickly and dangerously. She has to continuously protect herself from possible seizures. So again, we told her…just say you have a brain injury and it makes you take some actions that seem weird to others.

“Huh,” she said.

So for some time, we would be at a medical appointment for say, her wrist, or her toes which would not seem to be the stuff of a TBI.  And Lisa would wax poetical with the nurse, who was just trying to get her vitals, about how she has a brain injury and this is how it happened and these symptoms she is here for may seem odd to you, but not to me, since I have a brain injury.

Or we would be in the drug store buying shampoo and vitamins and nothing of any medical significance and she would tell the clerk that it was so nice to be out on such a beautiful day, and you really appreciate those things once you’ve had a brain injury. To which the 16 year old clerk would respond with a look of panic.

Or in a coffee shop, she would tell the waitress that she probably should not have any more coffee, because she has a brain injury and she’s thinking that since certain things can cause seizures and over stimulation is one of them for her, that perhaps too much coffee isn’t a good thing. But it really hasn’t proven to be the case, so what the heck, fill up the cup. To which the waitress looks at me with the coffee pot poised in mid-air with a “what-the-hell-do-I-do-with-that-information?” kind of look. And I just shrug my shoulders.

Or at the hairdresser when she tells her about the 40 platinum coils in her brain that stopped the brain bleed after her TBI, not that it affects getting her haircut or anything. To which the hairdresser looks at me with scissors poised in mid-air and I just shrug my shoulders.

That day I realized perhaps my advice had been taken a bit too literally and said, “maybe you can STOP telling everyone you have a brain injury.”

To which Lisa replied, “huh.”

“You Just have to Laugh…………”

©2015 Cathy Sikorski

Good Luck with that Appeal…….

This  is a Medicare Card. Everyone’s Medicare Number is their Social Security Number.

Conversation with Medicare Appeal Board:

“Do you have the Social Security Number of the person who is appealing?”

“Sorry, I don’t.”

“That’s okay. Do you have their Medicare Number instead?”

I rest my case.

“You Just have to Laugh…..”

©2015 Cathy Sikorski

Burritos or Betelgeuse……..

John and I were rumba-ing, quite nicely I might add, when my cell phone buzzed in my bottom. I was thinking I had the sexy rumba move down pat, but then realized it was my phone and the BIL (brother-in-law) moniker was flashing.

When I answered, I could hear a conversation but no one was talking to me. Obviously, it was some kind of a butt dial from one of the caregivers. I called the central caregiver dispatcher to tell her that she needed to call her peeps on their cell to disconnect BIL’s phone.

Ten minutes later, my butt jangled again. This time with some difficulty, BIL got on the phone and told me he was losing his mind.

After a long conversation with Howie, the caregiver, we were all losing our minds. Somehow, my BIL who hasn’t walked for 4 years had gotten out of his wheelchair and into bed with no visible assistance. He was distraught, he was disoriented and he was of the opinion that he could take care of himself.

Howie went to the Manager of BIL’s facility to investigate. Ten minutes later, I’m still trying to learn slow-quick-quick and the mystery is solbed. Howie reported that management had a freak out with BIL. At dinner no one could figure out why his power wheelchair wasn’t working. Management called the police, who came and pushed the behemoth chair to his room and apparently lifted him into bed, left him there and didn’t discuss it with anyone.

I have yet to come down on those people. First things first.

Howie says BIL was still very upset, so we leave the concluding ballroom class lickety-split and high tail to the apartment. We are seconds from pulling into the parking lot when my cell jangles yet again.

“Your BIL says he didn’t have dinner, so can you bring him something to eat?”

“Ummmm…it’s almost 10 at night, so I guess we can turn around and go to McDonald’s.”

I hang up, my hubby turns the car around, we drive 2 blocks, my phone rings. Life may have been so much better when there were no cell phones. Truly.

“He doesn’t want McDonald’s. He wants Taco Bell.”

Really? How distraught is he? I get his order and off we go to Taco Bell.

To make sure I get just the right order, I go in to Taco Bell. It is now after 10. This is a very small town. No one is in Taco Bell. No one is going through the drive-thru. There are three very sweet, young teens working behind the counter.

“Can I help you?”

tacos“Sure,” I said, “I’ll take a plain bean burrito, a 7 layer burrito, and a small Coke.”

The place is so empty my order echos throughout the joint.

“Can I have your name?”

I burst out laughing….because you might confuse my order with someone else’s?

“Ummm….I’m the only one here!”

“I know but I can’t place your order without putting a name into the computer.” I so wanted to say Betelgeuse, Betelgeuse, Betelgeuse, but I was afraid my night could get worse.

She hands me a cup and I go to the soda machine. Now, I haven’t been in a Taco Bell in years and years. This soda machine looked like a pinball machine. it was huge, had blinking lights of all different colors bouncing around and if I had had a brain injury, I probably would have gone into a seizure. I had no idea how to get the soda I wanted.

In that moment. I realized I, too will be handicapped in my old age. I won’t know how to get soda, I’ll have to give my ID to get anything I want, and young people and machines will wonder why I can’t navigate a world as simple as Taco Bell.

And yet….. I was still laughing at night’s end because an empty Taco Bell can put a laugh out there, bad night or not, McDonald’s wasn’t good enough, and the demand for bean burritos was to combat constipation. So even in our old demented age, we aren’t always the one’s who will be full of crap (bean burrito, anyone?)

“You just have to Laugh…”

©Cathy Sikorski 2015