Friends

When one has therapy, physical, or mental, it is usually short and sweet. Consider having therapy for a combined totall of 7 months and 3 weeks. Sounds rough don't it? Well, I took the first three weeks after my first brain surgery as I've written in the previous blog. The last 7 months were after the third brain surgery some three years later. I didn't know what I was getting into when I entered the room for sign-up, but little more than a year later, I know that hospital backwards, forwards, and through the window. I had multiple instructors; most I got along with, some took a little coaxing to come out of their shells. I didn't have to stay in OT, long. That's short for occupational therapy. The physical terristry took longer; 6 or 7 weeks at the most. The part I enjoyed the most was the open group sessions. Now, I, was in a group with an average age of 63 or so, and loved every minute of it with a group therapist. The speech therapist and I hit it off really well together. For example, she plays the guitar as I now do. There were two ST's, and rarely did I see the second one, but she was with me after the great tackle. There was one physasachiatrist intern, and two doctors. Now I leave my nemesis 'till the last. She was from New Guinea, and I didn't call her "fridgid" for nothing. She softened her temperment towards the end of my stay, and was over the Cognitive Therapy department. I guess we learned a lot from each other, and she turned out to be a friend in the end. I was employed in the hospital in the early summer to middle of fall when the great tackle was made. My responsibilities included working in the PT Gym and doing assorted things the staff needed in there. Next, I cleaned all 12 waiting rooms in the hospital, and when I was done with that, I could go up to the 5th floor to help feed the elderly. The nurses got to know me real well when I came by to fill the candy jar on our therapy cart which had all sorts of goodies on it. I really appreciate the nurses looking the other way while I help feed patients, for I wasn't supposed to. I couldn't help myself. I'd do all sorts of activities on the 5th floor in group session with the seinors. Everything from ballon tossing to weight lifting. I made more than a few good friends at the hospital, and remember, "You can measure a man by the friends he's made."

Memories

It's been a rough 5 1/2 years, since my initial brain surgery, but there have been a few bright spots along the way. Take for instance the three weeks after my initial brain surgery that I spent recouperating at a hospital for children. I shared my room with a bunky that had been injured severely in a bus crash. That crash had made the news, and my roommate was in bad shape. He had to have multiple surgeries to fix different parts of the body that you and I take for granted. He was just 14. I pittied his mom. She was just distraught over her son, so much so, that she bought me a gallon of chocolate milk. Visitors were very welcome, especially on Sunday, as there was nothing planned for that day. My Scoutmaster, now deceased, brought me some implements of the latest troop activity, (Frisbee golf discs) and a lot 0f hockey things, including a player's stick. Also, a scout brought me a humongous cookie, almost a foot in diameter, and a Garfield comic book. We had one field trip. It was to the circus, and it was being held at the American Airlines Center. Before it started, we were allowed to go out on the floor and meet the preformers. I was intrigued by the clown, who was ballancing a large plastic ball with ball with one finger. He transfered the ball to my finger, and it actually spun! It must have been rigged. The circus was terrific, and I brought souvineers back for my roommate who wasn't able to make the trip. I didn't want him to completely miss the action. By the end of the 3- week stint in the hospital, I was well enough to want to race wheelchairs in the hallways. That's when they kicked me out. Actually, I was itching to get out. I 'll never forget the date; August 6th 2002.

Bad Medicine

Being on three seizure drugs at the same time is lousy. All the caffeine in the world is not going to do you any good if you accidently miss one of them. Not only do you keep odd hours, but the sleep you are unaware of is limited, maybe four or five hours, perhaps. This is what brings on the seizures for me, plus a thousand other related things. Also, the epilepsy drugs have a list of side effects. I've nearly tried them all, and they haven't worked, so this makes me an expert in doing absolutely nothing about my seizures. Did I mention the constant feelings of weakness? When you've been on a medley of drugs year in and year out, it does something to you. It makes you tire easily, and do things one step at a time, instead of many. I guess it is a good thing that I'm reminded of my weakness. Paul wrote in his Second Letter to the Corinthians that when he asked Jesus to remove his thorn, He replied, "My grace is sufficient for you, for my power is made perfect in weakness." Just keep that in mind the next time you want to complain about not getting there fast enough and before you know it, the job's done.

Signs

You know, there's nothing like a good build up to the first brain surgery. The first few weeks start out with headaches you can't knock out with a horse pill, seconded by light sensitivity that would make a blind man cry out for light, and then, near the end, yammying up your lunch. Of course the fact that your mom comes to you, the night before you go to the hospital, and said that she'd researched my symptoms, and most likely had a brain tumor. And the rest, from here, is as they say, history. Of course, the first surgery is the worst one you've got to worry about; the other ones follow soon after in the same fashion.

The Greatest Tackle I'll Ever Make

It was almost like yesterday, except it was 300 miles North and a year and a half ago. I was volunteering for this hospital where I was receiving therepy after my third surgery. I had gotten on great with the staff of the hospital, and was even down to a first name basis with some of them. I was there on an out- patient basis for almost eight months, but stayed on as a volunteer almost three extra months. Anyway, it was in these final months that I had one of my Goliath seizures. I was cramming some papers into an already full paper bin. The bin was heavy- duty plastic, and was at least 5'x 4'x 4'. I had already been feeling rather poorly that morning, but not what I was going to feel like in the near future. My seizure came on like ones that had come before, right shoulder jerking up, my teeth gnashing together. I lost control of my right leg, and half contiousness. It is in my nature to grab on to something and hold on to it for dear life when I'm like that. Apparently, that was the paper recycling bin. I just remember me on top of that bin, and the seizure was over. The people in the next room timed it at a minute and then some. Anyway, the paramedics were called, I took a short ride in an ambulance, my family was called, and the wound on my wrist healed. I stopped my job the next day, but how many days is it when a recycle tub gets knocked over? In my case, you don't want to know.

Strange, but True!

Funny thing about brain surgeries, things don't go as expected. For example, I've had three, and none of the above have gone as planned. Take the third one. I remember laying in the Pre-Op room joking with my family. I was hooked up to an IV that was administering the anastesia, and I had just asked the surgeon to take pictures of the OR with his camara phone. Wait 'till he hears I deleated them by mistake! Anyhow, that's what I remember before surgery, but afterwards, just half an hour after I woke up, I was ready for a three course dinner. Of course, they don't serve that in the ICU, and my old room was being prepared for me in the Hotel Presby Hospital. I love the staff there in that wing. Earlier, with one of the staff, I ordered some pudding over the phone, and I pretended I was dying! The male nurse couldn't believe I had pulled that off, but naturally, yours trully, the Scrounger, did. I was becoming a real pro at brain surgery, as you might imagine. You could almost say it"s a hobby of mine.

Run the Gammit

When I went to see the epileptologist today, I was semi-prepared with questions and comments, but not for the resulting options. They were: 1. More brain surgeries (if they could be done safely), 2. More up and down again with the anti-epileptic drugs (I've been on nearly all, and every variant of said same in my illustrious career. And last but not least, we have the option of the Vagus Nerve Stimulator, an option worth taking a closer look at, seeing that the medicines haven't worked consistantly for 4 1/2 years. We were looking at it a few years ago, but my seizures were more controlled then. It's High Noon in my body, and I want those secondary seizures out by sundown, preferably via VNS.

Things I've Learned That I Can and Cannot Do

Most kids start learning how to drive at 15, and get their permit /licensce at 16- 18. At least I am told so. I've had to take the back seat to my younger brothers, learning to drive, plus do some other things that are a little dangerous for me right now. I am 20, and while I have been out for some brief driving lessons with my mom a few years ago, I still have to remember what the Bible says "All things are possible for me, yet all things are not possible for me to do." I'll never forget my first driving lesson, it was at a golf course. Seriously, I was 15, and it was the spring after my initial brain surgery. I was on a rappelling campout with my Boy Scout troop from Carrollton, in North Texas. It was the last day, Sunday, and on a whim, my dad let me drive. We also had a special passenger in the car, the Assistant Scoutmaster of the troop. He sat right behind my dad, and I sat in front of my little brother. Now, the camp was someways back in the woods, about three miles. Well, I drove the three miles without a hitch, but when my dad asked me to park in the lot, I did things a little backward, quite unintentionally. First, I punched down the accelerator to 30 mph, and ran into a rock at the back of the parking space. Three things happened: I had my first seizure at the wheel, I tore a hole in the radiator, and I pushed a 27 ft cubed rock backwards 6 inches. It is still there today. Well, we all made it home all right, though some of us not in the same vehicle. Oh, yes, and if you think I needed a motor to push that rock around, just wait and see what I can do with a full, industrial, paper recycler bin mono e' mono.

The Good Times

This evening reminded me a little of what it was like to be 14 again, and no tumor, and especially no seizures. I thought I would always hate Mondays, (Garfield) but a few of them I have good memories of. Anywho, I was out with my Venture Crew, and we visited a hobby shop and had some ice-cream. It felt good to be own person for a set amount of time. Now to those that think I should always talk shop about seizures, I don't think so. With my relative history, goes all the fun things I 've done as a result of it. Except for the weeks of radiation I underwent, I will always remember that final day as being fun. I can recall the time of my last radiation treatment: 05:05:66 after all these years. It was a sight to behold! Me, walking out of that treatment room for the last time wearing my mask and solemnly waving a flag I had made up at home. On one side, it said "Fnished," and on the other side, I drew a checkered flag. It was pretty close to Thanksgiving then, so I offered to fry the turkey on my knoggin.'

Getting My Excercise

Well, it wasn't a day for the books yesterday. I had two grand mals, and I was only resting from whatever it was that was making me so tired. (Probably the three anti-seizure meds that I'm on...) When I have a grand mal, this has been the case: My right side always is somewhat subdued. I guess it has to do with the initial brain surgery when I was on the table all those years ago, I suffered total right side paralysis. From my my head to to my to toes. The surgeon didn't know what was the matter. The tumor was 95% removed. It is called an astro- cytoma. In my case the tumor was benign, or not dangerous. The other five percent could not removed, because it had attached itself to my memory. I have had close to 500 seizures, and that's being VERY generous. They have come in all shapes, and sizes, depending on the drugs I am currently taking. I have also worn out three epileptologists with my detailed and brilliant career.

1st Post

I can't believe I'm doing this! This is the first time the whole online community will hear about my case, and after 5 1/2 years, 3 brain surgeries, and close to 500 seizures, I am still a loaded pistol.