Fear kills Joy
Kill the FEAR!
Fear kills Joy
Kill the FEAR!
This is not the name of a military drill.
This term describes the progression of a focal seizure up the motor cortex of the brain.
The seizure slowly spreads along what I call the “motor strip.”
I do not need to look at a diagram to remember the order of its areas.
That is because Rose’s first big, thirty-minute seizure involved
a Jacksonian March.
I watched as the chin twitch turned into, blinking eyes.
Next, her hands pivoted down at the wrist.
Then her little arms pulled in toward her chest.
Her torso began rhythmically writhing .
Her legs bent up toward her body.
She was in a tight knot.
Even her toes were curled up.
Then she started turning blue, because she could not breathe.
The doctor on the phone instructed me to get Rose to a hospital, FAST.
I carried this knot of a girl to the car.
When I placed her in her seat, she vomited and went limp.
The Jacksonian March was over.
Rose was four years old at the time.
This was the dramatic beginning of our journey with epilepsy.
She is twenty-six now.
She is the strongest person I know.
I pity the fool that makes fun of a person having a seizure if Rose is around.
I just hope she lets them live!
My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped, curtained rooms. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed, my dad was in the only chair. We did not share the fact that Rose’s graduation was followed by a seizure in the parking lot. We were all focused on what the doctor was saying about mama for a few minutes before the ruckus started on the outside of the curtain.
The first sounds were from a woman who was clearly miserable. She was loudly complaining about getting no help for her problems while a female doctor was calmly explaining why there had been delays. This conversation grew louder until the patient was screaming about pain and needing to pee. I sent up a prayer for this poor soul. Apparently her physician had not authorized the medications needed to end her suffering. I peeked out of the curtain to see her stumbling to the restroom with a specimen cup.
That’s when I saw the policemen. There was a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but so much security? As I was pondering my question, I heard the saddest sound I have ever heard. It was a long, soulful howl from a person around the corner and out of my view. The hair on the back of my neck stood up. My heart felt heavy in my chest. What was wrong with this person? Then there was a scream and a crash. The blue swarm circled the source of the sounds. It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to this desperate person. He was almost cooing to him. It was like one calming a scared wild animal. The other officers were young men and women in uniform. Their faces showed concern for the source of the scream. They were letting him release his anguish while forming a barrier between him and the rest of the people in the Emergency Room.
I stood behind my daddy’s chair with my arms wrapped around him. There was only a curtain between us and this sad situation. I was fervently praying with tears rolling down my face. I was not afraid. I was not praying for my mama. I was not praying for my Rose. I was praying for this encircled stranger who was at the end of his rope, broken and alone.
Those officers, they were heroes. They were forming a barrier between this crazed young man and the rest of us. When you are looking for angels in this world, you may not see their halos and wings. Instead, they may be wearing badges and uniforms.
So Seizure Mama’s pity party was abruptly ended by a look at real suffering. Once again, I was shown how blessed I was. I am a slow learner, but I eventually figure it out.
The day of Rose’s college graduation finally arrived. She was super excited. There were over four hundred graduates and she was leading the line. She looked glowing in her cap and gown with gold tassels and sash. She had worked hard for this day for six years. She had taken classes at the community college part-time and worked at a restaurant just down the street. This ceremony was a victory for all of us.
We arrived early so that we could save the entire front row for family and friends. I was there with my camera to get photos of Rose and her fellow students as they paraded past. I knew hundreds of these students. It was like a reunion for me. What a wonderful night for our family. My parents could not attend due to mobility issues, but my sister was there, along with Rose’s dad, aunt, uncle, cousins, brother and her other set of grand parents. It was a big event for the whole family. One we thought we may never witness. But here we were watching our Rose. Smiling brightly as she lead the line of graduates to their seats. She looked so happy and beautiful.
The ceremony was really long, but I enjoyed watching many of my former students marching across stage. I felt like I was graduating, too. In a way I was. I would no longer be driving here every day and spending hours in the library, the science building and parking lots. Our time here was officially ending. Rose had a plan of what to do next, but I did not.
The ceremony ended. There were more photos and many hugs. As we were all parting ways, my sister’s phone rang. Our parents’ neighbor called to tell us that our mother had fallen down some steps backwards. She was being transported by ambulance to a hospital. The neighbor was driving my dad to the Emergency Room. The hospital they were going to was over an hour’s drive from where we were. We decided not to share the news with Rose. We wanted her to have this special night without the worry.
My sister and I raced to her car.We stopped by my house to pack a few things before heading to the hospital. I was rushing around my room tossing clothes in a bag when my cell phone rang. The man on the line stated that he was with the Emergency Medical Services. He told me my daughter had fallen and gotten injured. “No.” I said, “My mother has fallen. We are on our way to the hospital now.” “No ma’am.” he replied “Your daughter has had a seizure and gotten hurt.” I collapsed on the bed screaming. My sister rushed into the room. I told the man to call my husband’s phone. I gave him the number. I hung up my phone only to hear another one start ringing in the other room. My husband had left his cell phone at home to finish charging. My phone rang again. It was Rose’s friend Carol trying to find anyone in Rose’s family. I gave her Rose’s brother’s number. Carol called back minutes later to tell me that Rose was fine now. I was hysterical. Lightning might as well have struck me. God PLEASE, I am not this strong! Two people I loved most needed me and I was apart from them both. There was nothing that I could do. Helpless and hysterical! The combo from hell.
My son called the house phone soon after. He and his dad and run back up the street to the college to be with Rose. Her dad got on the phone and told me to go on and head to the hospital to take care of my mama. My sister drove that hour to the hospital as I rode in silence, wondering why life can’t just come at you in single file instead of a damn Charlie Foxtrot.
SEIZURE MAMA SPEAKS NOW
This is the last story I will post on Seizure Mama.
There are two more. The blog will not get those.
Rose will have to write the sequel to this book herself.
This mama is done.
I began with Rose in a “Hot Diaper ” and ended it with her in a cap and gown.
What’s next is up to Rose. I can’t wait to see where she goes.
We’re tough, real tough!
Rose went back to our favorite hospital’s Epilepsy Monitoring Unit the last semester of her senior year in high school. Her seizures had come back with a vengeance. They were long and strong. She was getting hurt during the falls. She had gone home bound from school due to the falls and injuries.
We were hoping to get new and different set of scans this time. These two SPECT scans together would reveal what was going on in Rose’s brain during a seizure and between seizures. Then the two could be compared. We hoped this new information could help pinpoint the source of her seizures.
Rose arrived at the EMU just two weeks before the prom. We were all hoping to get the results early enough for her to get out and get ready for her prom. Rose’s brother was coaxed into taking her. He planned to come home from college that weekend to be her escort.
Her dreamy satin dress had been purchased and altered, his tuxedo had been rented. All that was needed was to be released from the hospital in time to get there. We thought that surely two weeks was enough time. We never dreamed we would cut it so close.
The story of the scans will have to wait. They deserve their own pages. Rose did get out of the EMU in time for the prom. We checked out on Thursday afternoon, the prom was on Saturday. Rose did get to go. She did get to dance. Her brother was there to watch over her. She had her emergency medications in her tiny purse. We dropped Rose and her brother off at the Civic Center and we went to wait at a restaurant across the street. Her father, my sister and I were only a phone call away. We had pulled it off in the nick of time.
She looked beautiful. Her hair had roses in it that matched her salmon-colored dress. The bodice was covered in dangling sparkles. The corsage on her arm contained roses and baby’s breath. Our Rose was a princess and a warrior. While her classmates had spent the week getting their nails done and going to tanning beds, our Rose was in a hospital with electrodes glued in her hair.
So after nine days in the hospital, Rose goes to the prom. From hospital gown to ball gown. That is how Rose rolls.
SEIZURE MAMA SPEAKS NOW
Here is an example of balancing needs and wants. Rose needed new medical tests to get information to treat these terrible seizures. We were not going to wait any longer. When the opening in the schedule came, we took it. Rose wanted to go to her school prom. We planned for it and she went. We could relax because her brother was with her and we were right across the street, ready to swoop in. The faculty and her friends knew where Rose had been the previous weeks. No crown needed, she was queen.
One afternoon, Rose and I were shopping in a large department store. Rose was several yards away from me between the clothes racks. I could see the top of her head. I saw her head turn to look at two people and a dog strolling through the aisles in her direction. I knew she had spotted the dog’s vest. I also knew that she would be interested in watching the dog in action.
The big, shaggy hound was wearing a red triangular vest on its harness. The vest was a sign that the dog was a service dog of some sort. Our family had discussed the possibility of getting a ‘seizure dog’ several times. Rose had no aura before most of her seizures. Having a dog that could alert her that a seizure was coming would be a nice warning. Rose could at least get to the floor before falling down.
I watched Rose watching the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. As I stood watching, the dog turned and walked away from the two people. It stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
The trainer was surprised by the dog’s behavior. He pulled on its retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose. He paused for a few more seconds, before rejoining his trainer. The two seemed surprised by the dog’s break in training.
I spoke to the two people. I told them that Rose had epilepsy. Their looks of dismay turned into smiles. This gentle giant of a dog was a seizure dog in training. What they first thought of as bad behavior on his part, now took on a different meaning. The dog knew that Rose had epilepsy. His name was Mr. Biggles. He was with his trainer and new owner.
I got the name and number of the company that trained the dog. The threesome continued to slowly stroll around the store. Rose and I looked at each other in wonder. “How did he know?” she asked me.
It was my turn to be concerned. My first thought was that maybe he sensed an on-coming seizure. I told Rose that possibly he could smell the various seizure medications in her sweat?
Either way, I had a new hope for Rose. Maybe someday a dog could help to keep her safe.
SEIZURE MAMA SPEAKS NOW
We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up. This would have complicated the training of a companion pet. We did seriously consider one during the times when her seizures were frequent. They can be very expensive.
I did talk to a woman from this company about training a dog for Rose. She said that the dog must be trained with the person while having seizures. Roses seizures became so infrequent, that it would not be possible to train a dog for her. This was a mixed blessing.
Now that Rose is an adult, she may need a service dog just for protection. She goes places by herself. She is very independent. Several weeks ago, Rose had a seizure while away at college. It was at night while she walking beside a road. A dog could have at least stopped traffic.
If Rose ever needs a seizure dog, this little incident that happened in the store years ago convinced me that there are dogs who can sense more than her mama can. I am sure that Mr. Biggles has been a blessing to his owner.
She fought gravity with her face.
Knocked off her feet, but not defeated.
She got up and walked away
and left that bloody asphalt lying there.
Keep it up Champ.
You won again.