Personal hygiene is something that they teach in school, but looking at many kids, I do not think enough time is spent on the topic. Roll the tape back fifty years and you would think that a shower a week was excessive. There are a number of photos of John Lennon and Yoko Ono deciding to stay in bed for two weeks on two different occasions in 1969 to protest the Viet Nam war. The first one was at the Hilton Presidential Suite in Amsterdam, Netherlands. Several weeks later they had another one at the Queen Elizabeth Hotel in Montreal, Canada. There are pictures of their suffering. Room service, them having to get out of bed while linens were changed and of course they were able to have some privacy when they went to the bathroom. Other than those inconveniences, it was just like any other self-imposed passive demonstration against the policies exercised by a government against the wishes of a vocal and determined few who are willing to stand up to that government with personal sacrifice. All you need is love. This brings me back to personal hygiene. It has been insinuated in a number of biographies that John and Yoko were on par with the bathing practices of the time. According to today's standards, that would make them infrequent bathers. What would a room smell like if you were in it for several weeks and never really showered? What if you spent all of your time in bed, doesn't that create its own odor that is unpleasantly unique? There are other issues - flowers sent as good will gestures and food items sent. These pleasant scents all become a little overpowering when contained in a small space. There are the smells of other people. John and Yoko had the press in and out of their bedroom all of the time. What is it like to have people in and out of your room all of the time? What smells do they leave behind? These questions may have not crossed your mind. They did not cross mine. What kind of person thinks about this stuff? A person with too much time on his hands and just possibly in a similar situation. Not the save the world part from a posh hotel with reporters. Just the being in bed for a long-time part. I started to ask these questions in my modest room, even though the strongest scent was that of the antiseptic hand sanitizer everyone used upon entering and leaving the room. I spent about 25 nights chained to that bed, not able to leave the room. This was not a "specialty fetish spa" in Amsterdam. I was in the Cleveland Clinic Epilepsy Center at my own request. My first visit, I spent over two weeks in bed. Not my bed, that could just be considered aggressive sleeping. I spent my time in Cleveland Clinic's Epilepsy Center for a couple of brain surgeries. Ooohh…SCARY… Well, it is, kinda. As far as I know, in my case, they left everything in, so that was good news. But there are some odd things you notice being chained to a bed, specifically this bed. In my case, they had electrodes hooked to my skull. I mean ATTACHED. There were 52 the first time. Of course, they want those to stay put, so they use an adhesive to make sure. They apply either model airplane glue or Gorilla Glue™, I'm not certain. Then they wrap it all in enough bandages to stretch to the moon. Of course, it is necessary to bring the wires together and tape them like those cables behind your TV. Plug that into the wall and TA-DA! You are a locked in, a bed prisoner. You can't go very far because if you do, the back of your head will yank back as if you were on a pit bull chain. Let's get some of the accommodation descriptions out of the way quickly- 1. You are watched 7x24 from a camera focused on your bed to see and record if you have seizures 2. You have other monitors, (oxygen, heart rate, hair color…I don't know what else, just OTHERS), that are attached to you which the data are recorded every 4 hours and the location inventories are made by staff every 6 hours. I guess the inventory is taken just to determine whether someone has stolen the equipment or not. I’m not making this up. It seems that the thief would have to have taken me as well and I assure you I would have made a ruckus. 3. There are screens above your head behind you that are recording all of your brain waves to watch your 52 leads on your head. 4. There is a window you can look out. 5. There is a 13" TV you can see that is mounted up near the ceiling across from your bed so you can watch whatever programming is available. Ok, I think you have the picture- standard hospital room. Except for the screens, video camera and the brain leash, those are different. I think that I forgot to mention I cannot get out of bed to go the bathroom without a nurse in attendance in case I fall, so I have to call one. I am on the Epilepsy Floor, 13 suites, all filled with people being monitored for epileptic symptoms. When any of the patients have a seizure, four members of the staff immediately race to the room, cover all four sides of the bed to protect the patient. That staff has to determine if medicine, oxygen or some other immediate care is necessary. All of this is recorded. You know that a seizure has occurred if you are one of the staff because a very loud siren goes off and blue revolving lights like those on a police car, go off outside of the patient's room as well as in the room. It is a great facility and the staff is awesome. The alarm system is effective up to a 100 yard distance, possibly further. I did leave out a key detail. The Epilepsy Floor is not designed to keep patients from having seizures, it is designed to monitor them when they have seizures. The goal is for patients to have seizures. Thirteen patients, 7x24 monitoring and an environment designed to create seizures means lots of sirens and flashing blue lights. It is similar to being a married couple who has worked hard not to get pregnant for years and then decides to have a baby. The madness of not being able to have a baby is so frustrating. I was in a situation in which the only way for me to leave this prison of sight, sound and physical constraint was to have seizures! There are several ways to assist this process. The first one is to stop taking your medication cold-turkey, which I did. The second is to go without sleep, (which I was surprised that between all of the interruptions day and night there was a concern this would be a problem), and the third was alcohol. They don't give you good alcohol, they give you hospital alcohol, distilled to all of the proof with none of the flavor. I would have chosen Tito’s Vodka if a preference had been asked. It was five days until I had enough seizures to capture the data they wanted. Then there were another couple of days to stabilize and then five more days to titrate my medicine levels back to where they were before coming to the clinic. Seizures are not all the same, even though the movies make them out to be the same. The character hits the floor and shakes uncontrollably while someone helpfully tries to shove a spoon in the seizing person’s mouth. The movie seizures are called Grand mal seizures, and are only a small part of all of the epileptic seizures that are had by people diagnosed with epilepsy. BTW – forget the spoon. Just turn the person on their side, keep him or her from hitting his or her head and keep them safe. Grand mal seizures, (the big ones), are awful. They give important data, but after one or two in the hospital, they introduce some medicine to keep your seizures below that grand mal level. What makes them so rough is the momentary sensation that the lights and sound in the world are being switched off, and then they are. In that moment, just before, there is the terror that they will not ever come back on. I've only had six grand mal seizures in my life. I've had countless other seizures. They show up mostly in my speech and memory areas. I can't speak, or I stutter, or do not recognize or understand words and so on. Memory wise, there are all sorts of symptoms. There are many other types of seizures and seizure symptoms. There are websites with lots of information if you are interested. You are probably not. Sure enough, the data came back from my 11 nights in Cleveland and it was true; I had epilepsy. They also had a rough idea of where it was in my brain, but if you are going to do things to the brain to treat it, you want to be VERY certain of where it is. That means you have to go back to the hospital. By this time, we are buddies with most of the staff on the Epilepsy floor. We should have brought gifts. This time we were doing all of the same stuff as last time; head leash, camera monitoring, lights and sirens, screens for data. The one thing that was different was that sixteen holes were going to be drilled into my head to find out exactly where the epilepsy was being generated from. They call this brain surgery, I guess it is because they are putting that many holes through your cranium into your gray matter. It’s just linguistics, right? (By the way, why, for the love of all that is smart, are you still reading this? I am POSITIVE that you have either skipped this chapter by now or are skimming. It seems like all of the funny stuff is over. There are a couple little bits, but how funny do you think brain surgery really is? Spoiler alert: I live.) As I entered the operating room, they introduced me to the machine that was going to drill the holes and leave the fiber sensors behind in the gray matter of my brain on the left side, where my speech and memory areas are. It was like looking at the torture device out of "Star Wars: A New Hope" that Darth Vader uses on Princess Lei. Nine days later, a few more nasty seizures and there is new news; the doctors know where the epicenter of my seizures are and it is inoperable without high chance of permanent side effects. This means things like worse memory, speech and other complications. That's about a 20% risk. Hmmmm…..Jen and I decided that was too high. Next choice was to stick a metal tray inside of my skull that held the equivalent of a pacemaker for my brain to counter-act the electrical discharges which were causing the seizures. This was my best option. Oh, I also get to keep taking the four medications each day that I am taking, just maybe less dosage over time. Quick inventory; • 2 sessions in the Cleveland Clinic Epilepsy Center with 20 overnight • 1 invasive brain surgery with 16 sensors drilled into my head • 7 blood draws, 2 MRIs and 2 CT scans
Conclusion, surgery to install a device on the outside of my skull but below my hair. This device sits in a shallow trench dug out of my skull bone and screwed to my head. Two leads are inserted in my brain itself to read its activity and apply a counter charge to offset the epileptic activity. It reduces the epileptic activity 50% or more, 35-40% of the time. If it doesn't work over two years, they pull it out and fill the hole with bone plaster. During the entire process, the patient stays on the previous medication at some reduced level, possibly. Well, with those types of odds, what would you say to invasive brain surgery? We said, “I'M IN!” Of all processes I have been through, device installation is by far the easiest. It takes four days from beginning to end, of which I spend only one night at the hospital. It's the most painful of the procedures. The skull doesn't appreciate the trench and the scalp resents the 37 stitches. That having been said, we like the ice cream and Lulu's on the way home. We pick it up about half way home at a little place in Dayton. As I read all of this again, I realize that it is an out of body description. I'm describing what I was doing and physically what was happening and feeling, but I am avoiding the question of what was I feeling? There are lots of emotions to choose from. The one that comes to mind very often is frustrated because of a lack of control. For the majority of the time, I really was