Becky is single and lives with her cat Ruby. She likes to write and drink wine. She an expert wine drinker but a beginning writer.
It was July 1980, and my 30 year old mother went into premature labor. She already had a 10 year old girl and a 7 year old boy, but this baby was "a happy accident”.
“Surprise” the doctor told her it looks like twins.
My mother was shocked; my father was excited. Those were the days when ultrasounds were not done regularly unless there was an issue. Hours later after an emergency C-section we were born.
My sister and I were born very premature, and given a slim chance of survival. We weighed only 2lbs each which was a very low birth weight to survive at that time. My father could hold us easily with one baby in each hand. We were skinny,red,and covered in tubes.
Although we looked very much alike we were fraternal twins not identical twins. Fraternal means we were conceived from two seperate individually fertilized eggs. Whereas Identical is from one egg splitting apart into two embryos.
Miraculously we pulled through and eventually went home after a few weeks in Intensive care.
But it was soon apparent something was wrong. I was not reaching the same milestones as my sister. I was not rolling, crawling, walking…
After being brought to a specialist. I was finally diagnosed with Cerebral Palsy or CP.
This was likely caused because I was premature, and at some point before or during delivery my brain was deprived of oxygen, causing permanent brain damage.
Dr. Explains Spastic CP
My twin and I (I’m on the right)
What is CP
What is Cerebral Palsy?
Cerebral Palsy is a condition that causes a loss of motor muscle control. Symptoms can include shaking of limbs, a loss of balance, an inability to walk, seizures and a delay in growth and development. Cerebral palsy is also linked to learning disabilities and to mental impairments.
Sometimes thought of as a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed.
There is no cure for cerebral palsy. However it is not progressive. The goal of treatment is to help the person be as independent as possible.
The most common form is spastic CP, symptoms of spastic cerebral include:
- Muscles that are very tight and do not stretch. They may tighten up even more over time.
- Abnormal walk (gait): arms tucked in toward the sides, knees crossed or touching, legs make "scissors" movements, walking on the toes.
- Joints are tight and do not open up all the way (called joint contracture).
- Muscle weakness or loss of movement in a group of muscles.
The symptoms may affect one arm or leg, one side of the body, both legs, and both arms and legs. I have spastic diplegia which means both of my legs are affected, and there is also some upper body affects as well.
I was awkward, and had poor coordination. I had many surgeries and stays in the hospital as well as many hours of physical therapy to improve my condition.
I finally walked at age 4 with the help of leg braces and a walker. My parents devoted much time to enrolling me in therapeutic programs and bringing me to specialists. I had physical therapy every week. I was given extra care and attention.
Raising twins is hard enough never mind if one is disabled. I am sure my parents were overwhelmed. As a child it was a little confusing. I thought “why can’t I be fixed?” And like most children I believed in some degree of magic. If I wished hard enough could I be normal? Maybe if I just thought about it hard enough I could jump or walk up that step.
I was also painfully shy and never spoke to anyone I didn’t know well. Socially it was hard to make friends. My twin sister was more outgoing so I became friends with her friends.
Today I can walk unaided without a walker or crutches, however I do still use ankle braces or AFO braces. Tip see below amazon link for Billy’s shoes. I find these shoes fit most Ankle foot Orthosis braces I use. They avoid you trying to shove your foot in a shoe as you can totally unzip the top of the shoe and step in.
I can’t say that I am completely comfortable with my disability even as an adult. It is not so severe that it is immediately recognizable to strangers, and not so minor that it isn’t noticeable.
I have been asked if “Oh did you hurt your leg.?” Also I have been accused of being drunk since sometimes my gait may resemble a drunken stagger. It is not so common that you can say “I have Cerebral Palsy” and it will be immediately understood what that is, or that you are not necessarily mentally impaired.
Billy’s shoes (good for fitting AFOs)
It's Kind of a Funny Story
I have had some funny encounters with people who are curious about my disability. For example I went to get an oil change with a friend and when I walked to the register to pay. The cashier said casually said “So scoliosis” as if he was asking cash or credit.
”Excuse me” I said.
“So you have Scoliosis” he said
“Umm no…I don’t” I said.
“Oh” he said and just stared.
I finally offered “I have “Cerebral Palsy”.
“Oh okay” he said blankly “Well $29.95 for the oil change”.
My friend was nearby and when we walked out she asked “What did he ask you”? I told her once we got in the car, and we laughed all the way home.
Another funny thing is when you know people for along time they sometimes literally forget that you are disabled. I remember me and some college friends were piled in a car going to the movies. The parking lot was crowded and there were no close spots. I said “that’s ok just park in the Handicapped spot.”
My friend asked “who’s handicapped” ?
“Ummm me…” I said and we all cracked up laughing until we cried.
(I guess you had to be there).
I am grateful as an adult that I can live independently. I can walk, swim, write, talk, type…
I am grateful to my parents for all they provided. And the many doctors, nurses, and physical therapist that made me reach my physical potential.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
b4murray (author) from Massachusetts on January 21, 2012:
With the right treatment and therapy Today. Hopefully anyone can improve. Good luck to you and your sister :)
Anik on January 21, 2012:
I'm a 13 year old with an identical twin sister who has Cerebral Palsy. I could connect exactly to this story. Reading this gave me hope that one day my twin will be able to walk alone.
Thank you :)
b4murray (author) from Massachusetts on May 01, 2011:
I am glad people fing it interesting to read.
Robert P from Canada on April 30, 2011:
Thank you for sharing your story.
JLClose from OreGONE on March 12, 2011:
Thanks for sharing your honest story. :0) What a silly man in that store... "Soooo, scoliosis?" As if that is any way to strike up a conversation. People can be so odd. :0)
ChristineVianello from Philadelphia on February 28, 2011:
Wow, thank you for sharing this story. Only 2 pounds! God Bless!
b4murray (author) from Massachusetts on February 02, 2011:
Thanks hemustincrease. I am glad you enjoyed it.
I will be sure to checkout some of your hubs also :)
hemustincrease on February 02, 2011:
I liked the handicapped parking space part. LOL I guess that's when we know we have true friends. When WHO we are is not defined by anything external but everything internal. I enjoyed reading this hub. :)
b4murray (author) from Massachusetts on January 27, 2011:
Thanks Cari Jean... Yes It is amazing what they can do for babies today.
Cari Jean from Bismarck, ND on January 26, 2011:
WOW! I find it so amazing when preemies born 30 years ago were able to survive! My daughter was born 2 1/2 months early and she was in the NICU for 2 months. I was always thankful for the medical advances we have to help ensure a preemie's survival but preemies in those days didn't have any of the advances we have now. I believe God has a purpose for your and your sister's life and if you look to Him you will find that purpose. I felt blessed reading this hub - thanks so much for sharing.
RTalloni on January 19, 2011:
Don't laugh! :)
Did you know that most of America's charities only give a very small percentage of the monies given to the actual people they are supposed to be helping? Much of the money goes to "administrative" costs. Translation: galas, trips and other awards for those who bring in the most money, a large staff, etc.
I did the research once and there are one or two charities that make sure the people in need get the largest percentage of funds given. Now that I think of it, I need to check on that again... Anyway, you might be the person America needs to step up to bat on this issue! There are organizations that offer information to get you started in charitable work.
Maybe I should be looking for your smile to lead a worthy cause. Remember there a lots of options for working for charities. Something tells me you are not afraid of work!
b4murray (author) from Massachusetts on January 19, 2011:
Thanks RTalloni & WildirishRose!for the comments
I am currently looking for a job after my company downsized maybe fundraising LOL...
WildIrishRose21 on January 19, 2011:
Great post. Reminds me very much of my sister and I.
RTalloni on January 19, 2011:
Sounds like you could write a hub on the benefits of people making these donations rather than government taking charge and controlling the hospitals and doctors. I'm always amazed at the way Americans respond when given an opportunity to help others through charitable donations. Very often one special spokesperson can motivate large numbers of people, or even one person with large amounts of money, to give to a good cause by simple and honestly alerting them to the need.
b4murray (author) from Massachusetts on January 18, 2011:
Thanks! RTalloni I have had much support. I would encourage everyone who is able to make donations to the local children's hospital. So many babies young adults need their help.
RTalloni on January 18, 2011:
Well, I don't know if I've ever read a better hub. What an adorable photo and what a great perspective you've shared. Your anecdotes are priceless and your closing is outstanding. I am looking forward to reading your other hub. Definitely voting up and hoping to see more of your work!