Charles is one of the newest members of our Angel Family. He and his wife are working hard on Meningitis Awareness in Florida. Charles is also one of the newest members of our support team. We are blessed to have you, Charles.
I have been told by my loving family and others that I need to write this story for my self and at the same time for all those who are not familiar with the problems of Survivor of Meningococcal Meningitis. This is not just for me but all those that have had to deal with the side effects of this deadly disease.
I also dedicate this book to my parents Edward Joseph Moore and Marjorie Marie (Bourke) Moore and my Aunt Lu for being there with my parents and all the family members that prayed for my recovery. Also I would like to thank all the men at Todd Shipyard that donated funds to help pay for the medical bills so long ago, and those that donated blood to help me to survive.
I want to especially thank my wife Linda for all her help for editing, proof reading and helping me with my story. I can never repay any of them, but maybe by writing down these words, maybe I can help others understand. It all started on an early Saturday morning at 2:13 a.m. when I was born. Just after 2 days out of the hospital my mother took to see the doctor. According to my aunt it was a very summer day and the doctor asked my mother to remove my clothing and lay me down on the table. The office was very cold and the exam table was just metal without any covering. As soon as she brought home, she noticed that I had a fever. According to my mother I was red with a rash and very hot to the touch. When she tried to pick me up I would start screaming. She called the doctor right a way and he told her go get me strait to the hospital and that he would call ahead.
I was taken to the Children’s Infirmary at St. Mary’s Hospital in Galveston, TX. They did a spinal tap and as it turned out I had Meningococcal Meningitis (Neisseria meningitidis). I was placed in the children’s ward in an isolation room with a fever of 106 degrees and above. My parents were not allowed to go in or to touch me. My parent was told at the time my changes of survival was one in seven. Today, according to the Meningitis Foundation of America there about 80,000 cases in the United States each year, of the only 5,800 are caused by bacteria that are life-threatening of which I had. Death can occur within 24 to 48 hours even with early treatment.
My father was working a machinist at Todd Ship Yard in Texas City at the time. He had a boat at the time which he had to sell to pay the hospital. He also worked extra long hours and some of the men also donated money to help pay the bills. At one point I was in need of a blood transfusion and the only person that had the correct type as an Italian workman that volunteered. My father often told me that I looked like a pin cushion with all the needles from the Penicillin IVs sticking in me.
The nurse came to my parents and told them that I probably would not live pass the night. She told them that they should go to the chapel and pray. My father, mother and aunt went down to pray. Just after midnight the nurse came down and told them that I had just passed the danger point. I was in the hospital for two week until they were allowed to take me home. The doctor told them at the time that I could have problems with lungs and could get pneumonia; my back could develop scoliosis; they did not know about the acute neurological complications and other problems. The first two I did not develop, but did develop others.
Growing up my mother would remind me that I was very sick and almost died, anytime I wanted to do something, such as joining the Boy Scouts, or play football in school. I know that she was only going on the information that the doctor gave her at the time and was afraid that something would happen. With her being overly protective of me, my aunt thought that I was very spoiled child. I was the third child; my brother was the oldest and then a sister. My brother never had anything to do with me, because I was a lot younger then he was and did not want me to gat along or he thought I was favored by my mother. I have always been closer to my sister, she watched over me and most of the time I hanged around with her and her friends.
School was another challenge for me, I was a slow reader and my comprehension and writing was not all that good. I went to a Catholic school and spent two years in kindergarten. The teacher told my parents that I was not ready for the first grade. I was also put back in the second grade; again they said that I had trouble with comprehension and reading. They were going to hold me back again in the third grade, but my parents placed me in Public School, they told my parents that it would be very uncomfortable for me because I would be a lot older and taller than the other children. They went and placed me in the fourth grade. One of the problems was that I had trouble expressing myself it seemed like my brain had a short circuit. Things that I wanted to say just would not come out of my mouth. I would have to read something two or three time before I could under stand it. Even then I had trouble retaining the information. I would get so tired of trying to read, that I would just stop and hope that I would retain enough information to pass the test.
We had moved from Galveston, TX to Port Arthur, TX where again I had problems with at school. The schools would test me and I would wind up in a special class for challenged children. Most of the other children would say things which at the time made me feel ashamed. Even in high school I was placed in a special education reading class for slow readers. There theory was that if they projected words on the wall and then changed the speed that they could teach you to read and comprehend faster. I did have one good teacher; he recognized that I was having problems comprehension and would fail his class. He told me that if I answered the end of the chapter questions that I would pass his class. He is the only teacher that every recognized that I had problems, he was also the biology teacher, maybe he did understand. I would also try to read out loud to my self hoping to retain more. My father would get up set because I would be bothering him. I would also write things down five to ten time and try to visualize the words as I wrote them, thinking that might help also. Because of all this I had low self-esteem knowing that I would never be the same as normal people, at least in my own eyes, but then what is normal? But never the less I did graduate from school.
Survivors of meningitis are left with many problems. Some of them stem from neurological deficiencies, such as hearing loss, seizures, blindness, abnormalities in speech discrimination, and in some with school behavior problems.
I joined the Texas Air National Guard in Nederland TX in 1965, in 69 I became a full time Technician working at Ellington AFB, Houston, TX for the 147th Fighter Interceptor Group. I was working in the press shop. My job was to print every thing for the Command, from orders for personnel, to command instructions to training syllabus using an offset press. We sere using a paper like plate to make the images then etch the plate. The Colonel of the flight training school wanted me to put some photos in the training manuals. At the time all I had available to make copies was a Xerox copier. Needless to say the photos look washed out, as anyone who tries to make copies of photo using a coping machine. I decided to go the base print shop to see if they had anything that I could use to make good copies. They showed me how to use their camera to make rubber plates. We had to send out to have metal plates made to for graphics multi color prints. I made a home made plate maker by making a wooden box with a place to hold a piece of frosted glass a heavy rubber cover and lots of light bulbs. The instructors were very pleased and for the first time in my life I felt that I had really accomplished something on my own. I received several letter of Commendation from Generals on down. I spent six years with the National Guard and then I started to get what I thought was asthma. The doctor that I was getting allergic to the air pollution and that if I did not move it would get worse.
My wife and I were married in 1968 before leaving Houston we had four lovely, and most importantly healthy children. My wife’s parents had already moved to New Mexico, so we decided to move out there also. After a while I joined the Naval Reserve then one year later I went active duty in Training and Administration of Reserve (TAR) program. Our duties included training reserve personnel at the Naval Reserve Centers and to keep all records up to-date and handle all the Administration aspects of the command.
I was sent to a Yeoman “A” school in Meridian, MS for the first four months. They showed us how to type Naval letters, endorsement, figure out travel time on transfer reporting endorsements, and to work on Officer Records. After that I was sent to my first duty station. That is when all hell broke loose. The personnel man that I work for acted like that I had 10 years of training as a Yeoman. I told him at the time I had had never worked with personnel records before. I started to read the manuals to find out what to do.
Even in the Navy I started having problems, it had gotten so bad that I doubted my self again. After working on a few records I would take them to him and ask that he check and let me know if there was anything I need to change. Instead he would through the records across the room and start yelling how stupid I was and that I did not belong in the military. All the self-esteem that I might have had from my last job when out the window. No matter what I did would never please him. Every thing came easy for him, he had a photographic memory. He could tell you what page, and paragraph even the number of lines down in the paragraph something was. The manual was over 1000 pages thick and he knew every paragraph, line and word in it. He was also the type that would act like a friend but would stab you when he had the chance.
My first evaluation was major unsatisfactory and was not recommended for reenlistment. I was asked to write a statement and I told them no. I received a message from the Bureau of Personnel in Washington stating that I had to make a statement and would not be able to reenlist or re-affiliate without their permission. I wrote a two page statement and enclosed it with 13 letters of Commendations from Air Force Generals to Colonels. After a few weeks Washington sent back another message to disregard the first message.
After a few months, the same individual went to inspect the records on one of the unit that we were responsible for and reported back to our Commanding Officer that the records were messed up. In stead of sending a message to our higher command telling them of the problem. They sent one out telling the whole chain of command about the problem including Washington. Needless to say, this did not set well with the higher echelons. Washington notified that they were going to send an inspection team down not to inspect the ship but to insect his command to possible replacement of Command.
The Commanding Officer and the Personnel man as me if I would look at the pay records for the ship and to see if I could straighten it out. At the time we were in the process of changing from paper report to computerized pay reports. I had to get the muster sheets the muster records and the personnel report and check each individual muster with each of the other records. I came up with a ledger sheet with each individual names listed and along side there name I showed the information for each record for every day the mustered and was paid for. I found out the some were missing up to one days pay and as much as two weeks pay. Also I found that some of the aviation officers were not getting their flight pay even though they were not flying but were still eligible for the pay. Some of the people received on 20 dollars to as much as 2,000 dollars (for the officers) for missing pay. I never receive a thank you from the Commanding Officer or the Personnel man. I was just glad that I was able to help the personnel get the money they were entitled to. Needless to say I also save the Commanding Officer’s and the Personnel man’s job.
The job did not get any easier; I still had trouble with the same individual. The medical chief was really worried about me, he told my wife he was afraid that I might have a nervous brake down or to even try to comment suicide. When my wife told me about this I told her that there was never a chance of me commenting suicide, maybe murder jokingly.
When I finally transferred to my next duty station with a Patrol Squadron, I was assigned to the Operations Department instead of Administration. I did all the typing for the Operations and Training, flight schedules, training manuals, travel orders for all the squadron personnel and also did some of the flight records for the pilots.
The Commanding Officer would need to know how much funds were available at all times for travel. I came up with a ledger that showed the estimated amounts and the actual amounts after the orders were liquidated. I was able to tell me almost down to the penny was available so he could plan his missions. When I was inspected for the firs time by the Wing, they wanted to see my books. I brought it to the inspector and he looked at them and told me he has never seen such a good system and asked me if he could use the system for the whole Wing. What was I going to tell him, no. Each time after that when they would come in to inspect they would see me walk in with my ledger and told me that they did not need to see the books, they knew it was correct. For the first time in long time I felt really proud. After that I found out that before I was transferred to the Command, the Administration Chief with the Patrol Squadron called my previous Command and asked with kind of person I was, and the Chief was told that I did not know anything. Needless to say I proved them wrong and the Administration Chief wanted me in Administration. The Operations/Training Officer told the Chief he had his chance when he first arrived and did not want him, and now he was going to stay in Operation. The Commanding Officer had me typing all of his speeches when he would have to give a briefing to Higher Command. To a big surprise to me I received the Navy Achievement Medal for my accomplishment at the command.
I was transferred to other commands, but never did I have the same feeling or since of accomplishments and friendship as I did with the Patrol Squadron. From then on when I transferred to another command, I made it a point to tell the Commanding Officer the problems that I have, it seemed to work out a lot better that way. I never had any more problems with the commands after that and still was able to pass inspections with no problems. All the inspectors that I had after inspecting my office the first time would come in and say, “You still here, I don’t need to inspect you.”
I was transferred to Naval Air Station Jacksonville, FL at the Personnel Support Detachment (PSD) and assigned to Reserve Officer Records as supervisor. I was in charge of over 1,300 records in Florida, George, Alabama, Mississippi and Tennessee. All the records were in alphabetical order; after a few months going through the records I decided to re-file them by state, location and unit. As the supervisor of the section, I started pulling the records and placing them on the floor. The supervisor for the Active Duty records asked me what I was doing. Apparently, filing the records in this way had never been done before. It made more sense to me to have records located within the unit rather than filed with all the others. When the re-filing was finished, we started checking the records with the units’ manning documents and found out that we had between 150 to 200 records that we were not supposed to have and were missing over 100 records that we should have had on file.
I located the commands the extra records belonged to and sent them to the correct PSD commands. I also discovered that many of the officers had their records in their own possession and was able to get them back. The other records that were still missing finally had to be reconstructed. Most of the records were not up to date and I devised a schedule to ensure that they were caught up to date. I was also able to persuade the Command to let me hand-carry the records to each command site to have them verified by the officers themselves and to get papers that were missing. Most of the officers told me that they had not seen their records since they left Active Duty, and were glad for the chance to review them.
Until I arrived in Jacksonville, the reserve Officer Record’s section had never passed an inspection. Eight months after I began my duty at PSD, the Inspection Team arrived to inspect the records. My section passed the inspection for the first time, and the inspectors said that this was the first time they had seen the records so organized and complete. We were also the first PSD command that actually took the records to the individual commands for the officers to verify, since they were not able to personally travel to PSD.
retired from the Navy after 30 years of military service. In my career I received three Meritorious Service Awards (for each 10 years of serve), five Navy Good Conduct Medals, Navy Achievement Medal and the Navy Commendation Medal.
By the way, the first Personnel man that gave me so much trouble in Pensacola eventually got his just desserts. learned that he was forced to retire because he said the wrong thing to the wrong person at the wrong time. He was assigned to Naval Headquarters and the Admiral himself told him to either fill out his retirement request or face charges. He filled out the paperwork and the Admiral personally got in his plane and flew it to Washington. Like they say, every dog has his day.
Despite all the years that I was on Active Duty, even with my accomplishments, commendations, and medals, I still have trouble with self-esteem. It is mostly a fear of failing and not living up to what is expected of me. There were times I would walk into my office and would just stand there, not remembering how to do something, even though I had done the job many times. But after sitting down at the desk things would come back. I was always scared of doing something wrong or not being able to learn something new. Sometimes I could be working on something and just stare at a piece of paper in a fog. When someone would come up to me and ask what I was doing, I would just tell them that I was looking over the information. There were a lot of times I was afraid I was just stupid.
I retired in 1996 after 30 years plus with the military. I am now working for the Jacksonville Sheriff’s Department here in Florida. I work in Data Entry for Central Records inputting reports from the officers on the streets. It is not as stressful as when I was on Active Duty, and I am more at peace now. The Department Supervisors seem to feel that I am doing a good job, and appreciate what I do, and my supervisors told me that I contribute greatly to the unit. It is real nice for a change to feel wanted again.
I was not until a year and half ago that I really started looking into my problem and the disease I had so many years ago. I would guess you could say that I was delighted that I was not crazy after all. Some of the side effects of Meningococcal were the same problems that I was having, even the short circuit in the brain (that is what I call it). I have never been able to express my feelings the way I would like to be able to. My loving wife would get upset with me when she would ask, “How do you feel?” or “What do you thing?”. I would just draw a blank and could not speak; it bothered me more that it did her. When I go to buy her a card, I try to find the best on that expresses the feelings I have toward her.
When trying to learn something, I must actually do it hands on; I cannot just read about it. It might take me a few days to learn something but when I do it normally stays with me. A lot of times I have bluffed someone and told them, “sure I can do that”, and then tried to learn it as fast as I could to get the job done. I have always tried to do the best I could and have told my children that if they do the best they can then they have nothing to be afraid of. I have never told them that they were stupid or lazy and always praised when they felt they accomplished something. It does not matter what I think or others think, it is what they think knowing that they have done the best they can. I just wish my father had treated me the same way when I was growing up.
I have just started trying to find a support group of adults that have had to deal with the same problems. I did find a wonderful group of parents that have children with this disease, most with even worse problems than mine. I have been trying to answer the questions that they have, to help them better understand what their children are going through, and at the same time help myself. By helping them I am able to feel better about myself in that I can finally contribute something back for all those that helped my parents save my life.
Some of them asked me exactly what problems I have and the names of them. I never had a follow up by any doctor or hospital except what my mother was told by the doctor when I had this. I have been trying to get my medical records from the hospital where I was born so I could take it to a doctor and be reassessed and see just what type of problems I do have. Maybe it is all in my head (laugh). St. Mary’s Hospital has been closed and is now operated by the University of Texas Medical Branch in Galveston.
At times I still have low self-esteem, but I try not to have it bother me that much anymore. I know that there are others who have survived, some with more problems and some with less. For years I have been looking for answers as to why I have so many problems. Recently I started searching the Internet for answers and when I found sites that described the after-effects of meningitis, everything started falling into place. All the symptoms I have experienced were listed and I finally realized that the reason of all my challenges is the meningitis I had all those years ago. I have been able to learn to work with them and through them. I have asked prospective employers and supervisors to work with me. Some of them were understanding, but others that did not seem to care or want to understand.
You can find support groups for cancer survivors, diabetes, muscular dystrophy, severe brain trauma, and scores of others, but there are no local support groups for meningitis. There are only a few of websites on meningitis, and two with bulletin boards with parents and survivors asking questions. In comparison Meningitis Angels has the best forum and is more active than the others. Parents can ask question on how survivors how they’ve handled the problems and help encourage them. The United Kingdom has a largest support group that includes Scotland, Ireland, New Zealand and Australia. It has a 24 hour, seven day a week support line and is called the National Meningitis Trust Foundation. I have sent an e-mail to them and they replied letting me know that I can call on their International toll free line if I need help. But I do not understand why there is nothing like that here in the United States.
From Chuck's wife, Linda. Living with the after effects of meningitis.
I met Chuck thirty-eight years ago when he came to my house to have my younger brother install a CB radio in his car. I opened the door and saw the broadest set of shoulders sans football pads that I had ever seen. Then I looked into his eyes and that was that. A year and a half later we were married. We celebrate our thirty-sixth wedding anniversary in March of 2004.
We have had our share of problems and disagreements, like any two people who have been together that many years, yet there is a deep and intense soul connection that binds us together and keeps us going even when we encounter difficult times.
The three years we spent in Pensacola during his first active duty tour were the most challenging to each of us individually and as a couple. We were separated for the first time in our eight year marriage while he went to “A” school to learn his yeoman rating. I was left in New Mexico with our four small children, my ailing mother, and our two homes to try to keep up. Luckily, my Mom’s trailer and mine were next door on her property so the distance was not a problem. It was hard for me to be without Chuck’s support while I cleaned, cooked, and tried to deal with teachers, doctors, and all the rest of the craziness of those days in the late seventies.
We have always been a team, from the moment we married until the present day, and this separation of four months was the first, and the worst, of those to come. As hard as it was on me, it was even harder on Chuck. He was in Meridian, MS, trying to learn all the ins and outs of initiating and maintaining officer records and administrative procedures. Although he was active duty, his job involved only those officers in the Naval Reserve. His learning methods were unique to him and, though he learned and retained much of the information, anything that was not hands-on training remained more abstract than concrete in his mind. He finally graduated and moved to Pensacola to wait for the kids and I to join him.
As you read previously, the supervisor that he was assigned to was an impatient and egotistical person with no people skills, tact, diplomacy, or empathy for anyone else. His belief was that since Chuck had 12 years previous duty with the military (Air National Guard) in the administration field, he should be familiar with personnel records and pick up the knowledge, jargon, and acronyms immediately. Anything less than a perfect record was literally thrown back at him with no instructions other than “fix it.” Chuck was trying his best, working long hours trying to get everything done that was expected but he was given no support or encouragement and no peace at all.
Chuck had a very hard time growing up. Little was known about the after effects of meningitis or the many ways that it affected learning. He was labeled as a “slow learner” and suffered from the humiliation and ridicule of the other children when he did not grasp a concept or knowledge as quickly as others did. He was even assigned to special education classes for English and reading, classes that were primarily designed for people with lower than average IQs. In Chuck’s case, mental ability was not in question, merely the difference in time and method required for his learning.
His self esteem suffered greatly during his growing years. He was often told he was stupid by teachers, peers, and family members. It took me the whole eight years of our marriage before he requested active duty to convince him that he was not stupid and that he could be successful in whatever he did. Emotionally, he had come a long way and had begun to believe in himself as a worthwhile person. Then he went to Pensacola. In the four months we were separated, the Naval organization and the people he worked with (primarily the one supervisor and the commanding officer) had nearly destroyed all the self esteem and confidence that Chuck had managed to build up. When I arrived in Pensacola in December 1977, I was appalled at the difference in him. The next three years I fought the effects of his office and did all I could to help, with one exception. That exception was our Marriage Encounter weekend.
Music "As Long As You Love Me"
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