I was 24 and I had just graduated from film school in February of 1998. I had big plans, dreams, and ambitions of going to Los Angeles to conquer Hollywood. I wanted that golden statue. I wanted to be on film sets working, learning and then one day directing my own films.
My plan was to move back to the parent’s house in Tampa from where I was attending school. I had slacked off during the school year and did not truly save money for the move to L.A.
I had always been a person to quickly find a job and not wait and have other people pay my way. I consulted the newspapers and could not find anything. My brother had informed me of a company that paid well and I could work there for a few months, and while I was living at home I could save money and be in L.A. within a short few months.
The month of May came and I was still making the concrete mud. Yeah, I had gotten hired on at a concrete plant, and I was a Batcher. I was the guy who mixed and batched the concrete for those trucks you see with the weird tumblers in the back.
Well, I now planned to move in two more months. After July 4th, I would then move to L.A. Now I’m excited. The move was happening for sure.
Well, 4th of July passed, still here in Tampa. Something wasn’t right. I wasn’t ready to leave yet. My other brother told me I would know when the time was right. Well, I had now planned to leave after my birthday which was in October.
During this whole time I was working at the concrete plant, I was making good money. But it was due to the fact that I had been putting in some serious hours. 12-14 hour days and most times it was six days a week. Then on top of that I would go out and have a social life and be out for long hours through the night and especially on the weekends.
It was sometime in late August or early September that I started to have sharp pains in my lower legs. I didn’t know what it was from. Thoughts had ran through my mind; not exercising due to me sitting down all day long at work. Cramps in the legs. A family member had thought it could had been Lou Gehrrig’s Disease or MS.
I finally made it down to the Doctor’s Walk-In clinic and I had them stumped. Well, like they say, you always get what you pay for. They couldn’t figure it out. They thought too, it was from lack of exercise. So they prescribed me muscle relaxers.
Well, it was working, somewhat. But now I was waking up in the middle of the night with sharp pains in the legs. My arms would be asleep and I wouldn’t lay on them to cause it. My legs would fall asleep when I would sit in a chair.
I went back to the Doctor’s Walk-In Clinic after the prescription ran out. So what did they do? Prescribed me more!
A couple weeks had passed and my condition had not really worsened, but it had not gone away. I finally went to the Tampa VA Hospital. I waited for a few hours till I got to see my doctor. She gave me an HIV test, asked me questions and then prescribed me…that’s right, muscle relaxers and to come back for a follow-up in a couple weeks.
Well it was almost a couple weeks and it was a Saturday and I walked out of the house into the garage and was about to head somewhere. I had my CD case (yes this was before iPods) and keys in hand and without any warning I was laying face flat on the floor of the garage.
I pushed myself up and sat up. It wasn’t funny anymore. My dad came out what seemed like milliseconds from when I fell. He helped me up and wanted to know what I was doing and I told him I was going off. He and my mom had taken my keys away and they ordered me to stay home.
That night I was suppose to go to my cousin’s house for dinner. It was for a birthday dinner they were giving me. My birthday, October 2nd was the day before though. He called me later that day and I had told him what happened and that I could not drive anywhere. He said he would come pick me up and he did. But there was a problem. I could still walk. I just couldn’t climb the stairs to his second floor apartment.
We get there and he walks with me to the door and he opened it. He walked in first and then he carried me up the stairs like you see in those old Vietnam movies. He was hunched over and I was almost riding him piggyback.
Later that night, my poor mother was so worried about me. She as a matter of fact had medical experience and worked at a hospital. She told me it could be a pinched nerve. Now picture this. She tells me the problem, and one possible solution. Next scene, I am laying on the floor and mom is massaging my legs, my arms, and my butt to possibly work out the “pinched nerve”. It was very embarrassing experience.
That Monday, October 5th, my dad drove me to the Tampa VA Hospital for my follow-up. This time we weren’t playing. We wanted answers. The doctor said she would get the resident neurologist and within minutes of meeting this fine man, he diagnosed me with Guillain-Barre Syndrome. My dad and I looked at one another and said, Gilligan who? Dr. Orlando Maldonado was a great person. He explained to me what all it was, what I had in store for me and that I had a great chance of a full recovery.
Guillain-Barre Syndrome is a neurological virus that attacks the body. It turns the body onto it’s self. What happens is these proteins are created and they are stored in the spinal cord. It starts at the lower regions of the body and works it way upward and then out the arms, to the hands, to the wrists, to the fingers. The recovery process is the opposite. It all goes back in reverse.
I was told whatever region the virus hits, pretty much bet on losing that function of the body. This virus, this disease whatever it is, because truly no one knows exactly what it is, it has hit famous people like Andy Griffith, the actor and Joseph Heller, author of “Catch-22”. It has a small percentage of deaths and a great percentage of full recovery.
I was admitted into the hospital that day and unbeknownst to me, that would be the last time I would walk for a long time. Well, what would see like an eternity.
Ever been in a hospital? Well, here’s what happens. They process you in. Then they get you to a room, thank whoever, I got a private room. Then shortly after you get into your room, nurses make their rounds. Poking, prodding, taking vital signs. Oh God, leave me alone. But hey, I had my old GameBoy and I was playing Tetris. Until I finally lost the full use of my arms.
It was a couple days later that they finally started me on the main treatment for GBS, Plasmapherisis. A blood exchange. Tubes got inserted into my chest that would reach down into my heart. It would take out the pumpiong, circulating blood and it would flow into a machine, taking out the bad plasma and then put the cleansed blood back into the body with a solution. I was to receive five of these, one every other day and then ten days later I was to find myself on the floor for Physical Therapy and then be discharged. Well that was the game plan.
I did do the ten treatments. I then was shipped down to the Physical Therapy floor to stay there for two weeks to get back my strength.
One of the cool things about the VA was that they let me go home on the weekends, granted there was someone there to take care of me. Well, my parents didn’t mind. But they didn’t know what was in store for them, especially my dad.
A couple weeks before my diagnosis with GBS, two of my brothers were in a very serious car accident. One brother, who was not wearing his seat belt, had fractured his back and was shipped over to the hospital where my mom worked. Then you had my ordeal over at the Tampa VA a couple weeks later. Between my parents they were always driving back and forth to different hospitals seeing me or my brother. My brother Chris, was ordered to stay in bed for six weeks in this bed that rotated 45 degrees each way and that was to heal his back. Lucky bastard. Day he was discharged; he walked out of the hospital.
I was told that I would only be in the VA for maybe a month. I had received the Plasmapheresis treatments two times for a total of ten treatments. I then went to the next treatment IVIG, or Immunoglobulin and they were big bottles of this solution pumped into me every other day and I got five of those. By this time there was talk of me being put into a nursing home and more or less forgotten. A family meeting with my health care providers, me and my parents was held. My dad pretty much told them where to stick that nursing home.
It’s almost Christmas time and I was now on the spinal cord injury floor and completely paralyzed. I was still able to go home on the weekends and it was getting to be a bother to my parents, I could tell. They had to sleep in the spare bedroom next to mine. I would wake up in the middle of the night screaming in pain due to the inflammation of the nerves. My muscles were like jelly and would just lay there. I would wake up in pain about every hour on the hour.
In the mornings, I would need for them to put me on the hospital issued toilet chair, need to be groomed, bathed, dressed and fed. I am their baby son and they were treating me like I was their newborn again.
Although this was tiring on my parents and myself. We felt it was better therapy mentally to go home to be around my family and my natural surroundings. In the end it helped. Especially when I started to recover.
My mom always researched things in the medical world. She was already putting together a huge portfolio on GBS for me to read for myself when I got the full use of my hands back.
So the first two treatments didn’t work. Was their a third? Not really. Mom had read many testimonies about Prednisone, which is a form of steroids mainly given to infants with asthma problems. She came to the hospital one day to talk to my primary doctor. He then called and consulted with the neurologists. They have advised us against the possible treatment of it. Get this; they said that I may not have GBS. I could have something else. I remember when I came back for the follow-up Dr. Maldonado had ruled out MS, Parkinson’s, Lou Gerhrigs Disease and said what it was. From what little I knew and what I could read while I had the use of my hands I had GBS. If it acted like GBS, looked like GBS, then it was GBS.
I had many spinal taps to see where the protein levels where with the virus. They were dropping. But not where they needed to be.
So we started on the regimen of Prednisone. That first day was a Friday and my doctor would not allow me to go home. They wanted to monitor my blood sugar due to being on the med. I was pissed. I needed to go home. That was my true recovery. I threw a fit. Told the nurse that came in to get me ready and dressed for the day to get the hell out of there.
She went to go talk to my doctor after she asked me what was wrong. Doc came back in and within a few mins and making a few promises to him, he allowed me to go home.
It wasn’t until the following weekend that we noticed a miracle. I moved a finger. I was at home sitting in a chair. I called the parents in. They asked me to do it again and I did it.
We told the doctors, they were ecstatic. Especially this new neurologist I had. Because he told me that after the last EMG or nerve conduction test I did, I would be paralyzed for life. Man did that suck. I was 24 going through all this and he walked into my room like he just scored at a party and told me point blank, that I had a garden variety of GBS and was stuck the way I was. That was like taking a balloon away from a young kid. I then gave up all hope and gave up on therapy.
Thank God for my mom and for her researching GBS.
Well, within a month of being on Prednisone I was up, walking and discharged out of the hospital.
But it didn’t end there. I now had drop foot and had to wear braces on my legs.
I write this memoir almost 13 years to the date and I still have numbness in the fingers, and lower legs. I still wear the braces, different ones now, lighter ones. I still get fatigued. But most days I am good. I still have poor circulation down in my legs. Some days they are ice cold and then some days not. I have calluses from the braces on my feet. I feel I am stuck with the braces. But it beats where I once was. I can relate to spinal patients because I was there. I am still a patient at the Tampa VA Hospital. I have now been transferred out of the spinal cord department. I still have physical struggles everyday. I do my best to live my life the best way possible. It's hard to forget where I once was. I can still see myself in that chair, being helpless when I couldn't take care of the simple needs or do the simple things like wiggle my toes. I still think about all the ones who still live in the same situation to this day. The ones who will never recover until the cure comes. Until science has a breakthrough and helps the ones that need it the most. So I thought long and hard about my career, about my life. I still wanted to go to L.A. I still wanted to make those Hollywood films. I didn't know what would be in store for me for the next few years. How I would work for the VA, then get into my field of film and video production, then later finding out that what my true calling was to be.
I hope my readers are still with me. This blog is not even 24 hours old and I do not have anyone following me. One day I will. I always said, if I can motivate and inspire just one through my films, then the whole experience was worth it. I say the same for this, if I can get one true loyal follower then it was worth it.
Until then, keep your chin up and know that each and every day you are closer to achieving your personal best.
For more on Triple Knot Productions, Inc. please go to www.tripleknotproductions.org
Brian K Dery
