Hello Recovery Friends and New Friends,
Many times in life, special people seem to enter our lives from nowhere. They can be in person, or even in cyber-space. I always say, “the lord brings people into our lives for many, many reasons.” I want you to meet a new friend of mine I met on Facebook, Charlene Childers. I happen to be on FB posting some information about how I share my own mental health disabilities on my recovery blog.
I looked up to see a FB message, and there was Charlene. She shared with me that she to lives with a disability as well. So we messaged each other a few times, and she shared her WordPress blog where she writes about her living with Spina Bifida. I know we were to meet so I could be inspired by her story. Her Blog Link:
I told her that I’d love to share her story her on my blog, so others can learn more about Spina Bifida, help raise awareness, and share about the disability she lives with on daily basis. Charlene is a true ‘inspiration’ to me and many. She is very adamant of not letting her disability stop her from enjoying all that life has to offer. Yes, I’m sure physically it is difficult for her, but this woman’s tenacity is amazing. She even works a full-time job in Panama City, FL. Before we learn more about Charlene, here is more about what her disability is.
What Is Spina Bifida? Courtesy of The Spina Bifida Association:
Spina Bifida is the most common permanently disabling birth defect in the United States.
Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine. Scientists believe that genetic and environmental factors act together to cause the condition.
There are several types:
Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, hyperpigmented patches on the back, tufts of hair or small lumps. In OSD, the spinal cord may not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests.
Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.
Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.
A child with Meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage. A child with Meningocele usually has it treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up fine, but they should be checked by a doctor because they could have other serious problems, too.
A child with OSD should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows. Spina Bifida Occulta usually does not need to be treated. ‘
Women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children. Women who have a child or sibling with Spina Bifida, have had an affected pregnancy or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy.
Now we know a little about what Spina Bifida is. What is like living with this disability? I will let Charlene tell you, and share what she has shared with me. She is not a professional writer, so be kind! LOL.
Living With Spina Bifida:
HELLO MY NAME IS CHARLENE CHILDERS AND I HAVE A DISABILITY CALLED SPINA BIFIDA.
I AM 41 YRS OLD AND I’M DEALING WITH MY SPINA BIFIDA EVERYDAY.
I USE A MANUAL WHEELCHAIR TO GET ME WHERE I NEED TO GO. I DO NOT LET MY DISABILITY STOP ME FROM GOING PLACES, I ALSO HAVE A SHUNT THAT PUMPS FLUID OFF OF THE BRAIN, AND INTO MY STOMACH. I HAVE HAD NUMEROUS SURGIES TO REPLACE MY SHUNT.
I HAVE MULTIPLE GROWTHS ALL OVER MY BODY THEY ARE EXTRA BONES THAT GROWS ALL OVER MY BODY ESPECIALLY ALL THROUGH MY LEFT KNEE AREA.THE DOCTORS CAN NOT REMOVE THOSE IN MY KNEE BECAUSE THE LIGAMENTS ARE GROWING OVER THEM.LIKE I SAID EARLIER I DO NOT LET MY DISABILITY STOP ME I HAVE BEEN ON NUMEROUS TRIPS, MY LATEST WAS GOING TO CANADA TO SEE NIAGRA FALLS, A LADY I GO TO CHURCH WITH GOES WITH ME ON MY TRIPS SINCE I DO NOT DRIVE AND ALSO I NEED HELP WITH OTHER STUFF. MOST KIDS WITH SPINA BIFIDA DO NOT HAVE CONTROL OF THERE KIDNEYS OR BLADDER. I HAVE CONTROL OF BOTH MY KIDNEYS AND BLADDER, BUT THAT DOES NOT MEAN THOUGH THAT I DO NOT HAVE PROBLEMS EVER SO OFTEN.
I WORK A FULL TIME JOB AT TYNDALL FEDERAL CREDIT UNION. I HAVE BEEN WITH TYNDALL 20 YRS. GETTING BACK TO NOT LETTING MY DISABILITY STOP ME I HAVE BEEN TO SEVERAL NASCAR RACES IN TALLADEGA ALABAMA. I ALSO HAVE BEEN TO CHATANOOGA TN, TO THE AQUARIUM PLUS NUMEROUS OTHER PLACES. MY CHILDHOOD WAS PRETTY MUCH LIKE EVERY OTHER EVEN THOUGH I HAD A DISABILITY. I HAD A GO-CART THAT WAS EQUIPPED WITH HAND CONTROLS SO I COULD DRIVE IT MYSELF. I AND MY FAMILY WENT PLACES JUST LIKE EVERYBODY ELSE ME AND MY DAD WOULD GO HUNTING EVERY HUNTING SEASON HE WOULD PUT MY CHAIR THAT I HAD THEN IN THE FRONT SEAT OF OUR JEEP AND WE WOULD TAKE OFF TO THE WOODS FOR HOURS ON END.
WE WOULD ALSO GO FISHING AND JUST TAKE A LAWN CHAIR AND SET IT UP AT THE BANKS OR EVEN ON THE BOAT WE HAD. IN SCHOOL GROWING UP AT FIRST I STAYED IN ONE CLASSROOM ALL DAY BUT AS I GOT OLDER LIKE IN MIDDLE SCHOOL I WAS MAINSTREAMED OUT TO REGULAR CLASSES, I WILL NOT FORGET THE FIRST TIME I STARTED MIDDLE SCHOOL THEY HAD NOTHING ACCESSIBLE FOR PEOPLE WITH DISABILITIES, NOT EVEN ONE RESTROOM, SO MY MOM TOLD THEM I WOULD NOT BE BACK UNTIL IT WAS ACCESSIBLE AND THEY TOLD THE PARENTS THAT THEY AGREED TO TAKE US IN THE MIDDLE SCHOOL THAT THEY DID NOT HAVE TO TAKE US SO I WAS OUT OF SCHOOL FOR 2 WEEKS UNTIL THEY MADE EVERYTHING ACCESSIBLE FOR US.
THE ELEMENTARY SCHOOL I WENT TO WAS JUST ONE CLASSROOM FOR THE DISABLED SO IT WAS SET UP FAIRLY NICE, IN THE SUMMER TIME THE SCHOOL WOULD TAKE US DOWN TO THE BILLY JOE RUSH STATE PARK WHERE THEY HAD/HAVE A VERY NICE SET UP FOR THE DISABLED STUDENTS, THERE CABINS ARE ALL 100 PERCENT ACCESSIBLE FOR THE DISABLED THEY EVEN HAVE AN ACCESSIBLE POOL THAT PEOPLE WITH DISABILITIES CAN USE, MY HIGH SCHOOL WAS FULLY ACCESSIBLE I RODE THE SCHOOL BUS EVERYDAY TO AND FROM SCHOOL , GETTING TO MY CHILDHOOD LIKE I SAID EARLIER I DID NOT LET THINGS STOP ME I TRIED TO DO AS MUCH AS POSSIBLE FOR MYSELF.
I WENT TO ALL THE SCHOOL ACTIVITIES THAT I COULD GO TO MY JUNIOR YEAR ME AND MY COUSIN WENT TO THE JUNIOR PROM BY OURSELVES, MY SENIOR YEAR I WENT TO THE PROM WITH A GUY FROM THE CHURCH I WAS GOING TO AT THE TIME BOTH PROM’S AND I HAD A BLAST AT! I DO NOT DRIVE SO I HAVE SOMEONE TAKE ME AND PICK ME UP WHEREVER I GO, EVEN AFTER I FINISHED SCHOOL I DID NOT STOP GOING PLACES LIKE MOST PEOPLE WOULD THINK I WOULD, I WENT OUT TO DIFFERENT PLACES I DID NOT LET THE WHEELCHAIR STOP ME, I WOULD HANG OUT AT THE SKATING RINK ON A FRIDAY AND SATURDAY NIGHT, UNTIL I WAS OLD ENOUGH TO START GOING TO THE CLUBS. THEN A FRIEND OF MINE AND I WOULD GO SEE THE GROUP CLUTCH UNTIL THEY QUIT PLAYING. I WOULD ALSO GO TO ANOTHER BAR THAT A FRIEND OF MINE PLAYED IN AND LISTEN TO HIS BAND. WHEN MY FRIEND WAS NOT WITH ME, MY MOM WOULD TAKE ME AND PICK ME UP WHEN I CALLED HER.
MY CHILDHOOD WAS A TYPICAL CHILDHOOD EXCEPT FOR THAT I WAS IN THE WHEELCHAIR, MY MOM AND DAD BOTH WORKED SO SOMETIME I WOULD HAVE TO GET UP AND GET READY FOR THE BUS BEFORE MY MOM LEFT FOR WORK, BUT WE MADE IT WORK. I HAVE A BROTHER AND A SISTER WE FOUGHT JUST LIKE EVERY BROTHER AND SISTER WOULD, THEY DID NOT GIVE ME ANY SPECIAL TREATMENT JUST BECAUSE OF MY DISABILITY I WOULD GIVE IT RIGHT BACK TO THEM IF THEY MESSED WITH ME, GETTING BACK TO MY CHILDHOOD I HAD NUMEROUS SURGERIES NOT JUST FOR MY SHUNT BUT FOR MY DISLOCATED HIP THAT WAS OUT OF SOCKET SO MANY TIME I CANT KEEP UP THE DOCTORS WOULD PUT IT IN AND THEY WOULD EITHER NOT PUT IT IN FAR ENOUGH OR THEY ROTATED IT TO FAR IN SO THE LAST TIME THEY DID IT THEY ROTATED IT TO FAR IN SO I FINELY DECIDED TO JUST LEAVE IT AND NOT BOTHER IT ANYMORE.
ONE SURGERY I HAD I DON’T REMEMBER VERY WELL BUT HAVE BEEN TOLD ABOUT WAS WHEN I WAS LITTLE MY GASSES GOT MIXED UP AND THEY HAD TELL MY MOM AND DAD ABOUT IT THEY LIKED NOT TO HAVE SAVED ME ON THAT ONE. WHEN I WAS IN SCHOOL I WAS THE POSTER CHILD FOR THE MARCH OF DIMES, I’M NOT SURE THE EXACT YEARS, BUT I THINK IT WAS WHEN I WAS ABOUT MAYBE BETWEEN THE AGES OF 6-12, MAYBE A LITTLE SOONER OR A LITTLE LATER. I JUST REMEMBER ONE YEAR I HAD TO WEAR A WIG ON TV BECAUSE I HAD SURGERY TO REPLACE MY SHUNT, WHICH I SAID EARLIER, WAS ALWAYS MESSING UP WHEN I WAS YOUNGER. I HAD SEVERAL OPPORTUNITIES TO MEET DIFFERENT STARS OFF OVER SEVERAL SOAP OPERAS.
I HAD A CHANCE TO MEET ISSAC OF THE LOVE BOAT, TWO OF THE PEOPLE I HAD A CHANCE TO MEET WERE DOUG AND JULIE, OF DAYS OF OUR LIVES, I MEET NUMEROUS PEOPLE THROUGH THE MARCH OF DIMES, BUT THAT WAS YEARS AGO AND I CANT RECALL WHO ALL I HAD A CHANCE TO MEET. EVERYBODY MAY THINK THIS IS CRAZY WHEN YOU READ THIS BUT I CAN TELL WHEN A STORM/HURRICANE IS COMING MY SHUNT WILL MESS UP AND I USUALLY END UP IN THE HOSPITAL BECAUSE OF IT.
FORTUNATELY AS I GET OLDER MY SHUNT HAS NOT BOTHERED ME AS MUCH, I JUST REMEMBER ONE HURRICANE, IT WAS HURRICANE ELENA I ENDED UP IN THE HOSPITAL HERE AT BAY MEDICAL AND THE DOCTORS WANTED TO DO SURGERY ON ME TO REPLACE IT BUT THE NEXT MORNING I WOKE UP AND I WAS FINE SO MY MOM TOLD THEM TO CANCEL THE SURGERY THAT SHE WAS TAKING ME HOME.
I DO NOT REMEMBER MUCH WHEN I WAS A BABY BUT DIFFERENT FAMILY MEMBERS HAVE TOLD ME THAT THE DOCTORS TOLD MY MOM AND DAD I WOULD NEVER LIVE OR IF I DID I WOULD NOT LIVE A FULL LIFE BUT I HAVE TOTALLY PROVED THEM WRONG. THE DOCTORS SAID I WOULD NEVER HAVE FULL CONTROL OVER ANYTHING LIKE SITTING OR EVEN TRYING TO WALK I ALSO PROVED THEM WRONG TO AN EXTANT WITH THAT ONE, EVEN THOUGH I USE A WHEELCHAIR NOW I DID WALK SOME WHEN I WAS YOUNGER BUT IT JUST TOOK ME TO LONG TO GET WHERE I WAS GOING, SO THEY SAID IT WOULD BE BETTER WITH A WHEELCHAIR.
I HAVE AN ELECTRIC CHAIR AT HOME BUT I ONLY USE IT FOR TRIPS AND LONG DISTANCES, I DO NOT WANT TO LOOSE MY UPPER BODY SO I HAD RATHER USE A MANUAL CHAIR. IN ELEMENTARY SCHOOL I RECEIVED PHYSICAL THERAPY BUT THEY CUT THAT OUT SAYING IF IT DID NOT PERTAIN TO MY SCHOOLING I WAS NOT ABLE TO RECEIVE IT IN HIGH SCHOOL I TOOK DRIVERS EDUCATION JUST LIKE EVERYBODY ELSE DID. THEY HAD SPECIAL CARS EQUIPPED THAT WE COULD US WITH HAND CONTROLS AND BRAKES. I WENT TO A DRIVING SCHOOL IN ORLANDO FLORIDA AN TAUGHT ME HOW TO DRIVE, BUT I NEVER FELT COMFORTABLE ENOUGH TO DRIVE BY MYSELF. THAT DOES NOT MEAN I DO NOT DRIVE, BUT I WOULD ONLY DRIVE WITH MY MOM IN THE CAR AND ONLY TO CERTAIN PLACES. WHEN I WORKED ‘THE PARKER BRANCH’ OF TYNDALL FEDERAL CREDIT UNION I WOULD DRIVE THERE AND HOME WITH MY MOM.
THEN THEY MOVED ME OVER TO THE ‘LYNN HAVEN BRANCH’ BEHIND HANEY, AND I DROVE OVER THERE, BUT IT WAS FARTHER THAN I FELT COMFORTABLE DRIVING. THE DAY I WAS BORN THEY DID AN OPERATION ON MY BACK TO CLOSE IT UP SINCE IT WAS OPEN WHEN I WAS BORN, THE DOCTORS TOLD MY MOM AND DAD HE WAS GOING TO GO IN THERE AND TRY TO REPAIR THE DAMAGE AND PUT THE SAC BACK WHERE IT BELONGED HE TOLD THEM RIGHT THEN AND THERE HE DID NOT KNOW HOW IT WOULD TURN OUT THEY WOULD JUST HAVE TO WAIT AND SEE, HE ALSO TOLD THEM THAT MOST PATIENTS WITH THIS CONDITION NEVER DO ANYTHING, SO I HAVE PROVED THEM ALL WRONG!
I AM ACTUALLY A MIRACLE BECAUSE THEY SAID I WOULD NEVER LIVE, AND NOW I AM 41 YEARS OLD WITH A FULL TIME JOB . . . THAT IS MY LIFE WITH SPINA BIFIDA.
Again, I have to share that I’m blessed to have met Charlene, and as you can read, she definitely does NOT let her disability of Spina Bifida slow her down from LIFE! I Thank Charlene Childers for letting me share her story. For more information about this disease, please visit. The Spina Bifida Association at: http://www.spinabifidaassociation.org today. And please visit Charlene’s blog too here: https://cchilders24.wordpress.com and share some support!
Catherine Townsend-Lyon, Author & Advocate