Seizure Diaries: My Light
It happened one night. Not sure precisely when, but sometime over the last year, I lost my light — my “internal light for life.” Not that I am suicidal or anything. That fate may come later, but for now I am in a constant state of fear for the future, which creates darkness all around me.
My husband, Charlie, had a total of three brain surgeries last year (2016). The first one was at Milton Hershey Hospital in Pennsylvania. During the operation the doctors guided a robot to place 17 probes into parts of his brain. The hospital had never placed that many probes in one patient before. The probes were inserted for 10 days,with 240 hours of observation. The researchers needed 10 days to study his brain and select the best location to implant the Neuropace device.
The neurologists and neurosurgeons had said that Charlie was a “hard case,” meaning there are other brain issues at work here, well beyond the seizures. We knew that. Charlie has a cyst in his left hemisphere the size of a tangerine. Over the years his brain grew around the cyst. Nobody has ever confirmed that the cyst is the cause of his seizures, but we believe it is a primary reason. The cyst is inoperable so there is nothing they can do about it.
The probe placement operation started off poorly: the original monitoring equipment was not firing properly. After many hours of struggling, the technicians sent for and received new equipment. Charlie remained unconscious during the interim period. I stood over the doctors and technicians “like a hawk watching her young.” The remedy took hours and finally they got everything up and running.
The surgeons removed the probes after those 240 hours of observation. Charlie told me the worst part was the removal of the probes. “It was the most painful part,” he said. The hardest part for me was to see his head wrapped in those bandages with lots of blood on the white gauze. It was scary for me to see Charlie like that.
Ten days later, the probes were removed, and Charlie was released from the hospital. I got him home safely, but I had trouble getting him from the car into the house. After three steps Charlie said, “Steph, I can’t walk. My legs are too weak.” So I wrapped my arms around his waist, firmly planted my feet onto the ground and told him to bend his knees. As I eased him to the ground a neighbor arrived in his driveway. My neighbor helped me get Charlie safely into the house. He was my guardian angel that day. I am so very grateful for good neighbors.
I realized shortly after getting Charlie settled in that I had to go buy a walker with a seat. He needed support if he got too tired. Trips to the bathroom, the shower, or the kitchen table were never simple. Charlie fell in the shower a few times, which is so frightening. I got a shower seat for his safety. I stand outside the tub listening for the sounds of a seizure. I make him talk to me while he is taking showers so I know the point he may need help.
In October the neurosurgeon called to say that Charlies next surgery was scheduled for late October. We learned that Charlie was the 851st person to receive a Neuropace implant in the U.S. We were so excited to make it to this point! For years Charlie had been poked and prodded, tested and videoed, all in an effort to see what might help reduce or stop his seizures. Experts from Johns Hopkins and Thomas Jefferson Hospitals had thrown up their hands in frustration.
With pride we motored toward Hershey Hospital for a second surgery. Six hours later, Charlie was in the hospital bed sound asleep. During my time in the waiting room a technical rep from Neuropace gave me a laptop which we use to download information from the implant. We were to collect information every 24 hours and send it to their system. He taught me how to batch and download the information daily. After my tutorial he escorted me to my car to make sure I got there safely and back again to the waiting room. What a sweet and caring man! He told me his mother taught him to never let a lady walk to her car by herself.
Back in the waiting room, Charlie’s surgery seems to take forever. I prayed for strength. I always have to be the strong one. I prayed for the doctors in the operating room and I prayed for Charlie.
Finally he is moved to recovery. Yes. So I am up in his room waiting and I think the nurse could see the stress on me, so she told me he will be a little while when he gets in the room before they have him ready for visitors and she gave me a meal voucher and told me to go eat something and get some coffee and relax while she takes care of getting him comfortable. I was hesitant for only a second because I looked into her eyes and I saw the concern for me so I must of looked like hell . I put my trust into her to get him in and set up for his first meal of the day. She gave me a second voucher to bring him some food up after I finished my meal, because he should be awake and hungry by then. Yes, he was awake and famished and ate everything I brought up for him. He missed the lunch time for that day, but later they brought him in dinner and lots of ginger ale soda. I went home to an empty house later that night so I could get some sleep. Charlie was on some strong pain meds that knocked him out.
A couple of days later I took him home. This time I had no trouble getting him in by myself. He still had to use the walker for a short period of time. Our nephew, Joey Caplan, came up to York to help with Charlie. I gladly accepted the help because I also am the only working income for us, so I was limited to how much time I could be off before I ran out of vacation days.
I have been taking care of Charlie since the seizures “reared their ugly head” again in 2005. He couldn’t work any longer and most of the burden is on me. He does get a check from SSDI once a month for disability. That took a while to get approved. The stress has mounted: years of doctor’s / hospital trips for his many tests and procedures; my very stressful full time job; my worry for Charlie every minute of every day. These stresses have finally taken their toll on me.
On top of the mental and emotional stress, Charlie had some serious injuries where I almost lost him. I was working the night shift one period when he had a bad gran mal seizure. During the episode, Charlie hit his head so hard on a concrete decorative vase in the corner of the kitchen that he cut 3 arteries in his face, severed his ear in half, and slashed a long laceration on the side of his head. He almost bleed to death. Thank God he was able to get to a phone to call me. I drove home from work and all I saw was blood everywhere. It looked like a murder scene.
I flagged down a police officer who called for an ambulance and a special medic unit and I got in my car and followed them to the hospital. After 60 stitches inside and out, they put him back together and I took him home. That night I cleaned up blood for 4 hours. The bleeding was so bad we had to throw out our 5′ x 7′ kitchen rug. At 2:30 am I finally finished; tired physically, mentally and emotionally. Somehow I got both of us up to bed.
I think my internal light burned out sometime that night. I realized how close I had come to losing him. I felt numb. I have stayed numb ever since that night.
I don’t do anything for myself anymore. I am just too tired. I have no will to even go get a simple haircut. I haven’t had one in over a year. I don’t think about myself at all anymore. The only times I actually feel joy are when I see my grandchildren. But the internal light is still gone. If something would happen to my husband I have no reason to go on anymore. He is my life. I am his life. We both have already talked about this situation.
I work second shift. Every morning, when I wake up, I lie there for at least an hour. My body is strong but my mind is weak. I get up and carry on like everything is normal on the outside, even thou I am dead on the inside. I tend to hide the darkness well.
I am only sharing this with all of you, so you can possibly understand the burden of the caregiver. In times of medical emergencies and long-term care, they are all but forgotten soldiers in the battle for hope.