How many people can say that their adult age nearly matches the number of surgeries they have had over their lifetime? Well… it’s true. As Bill Cosby used to say, “I’m as serious as a heart attack.” For Ladyjustice, the number used to be exact, but alas, LJ is behind on surgeries. LJ is 56 years young with a “resume” of 55 surgeries. And… just as if LJ had cracked open a great fortune cookie message, it was during that last surgery in 2010 for carpel tunnel of the dominant hand (#55), LJ would never have discovered ImaginePublicity and Susan Murphy Milano! Now that was truly fortuitous!
Before you gasp in wonder or start to feel sorry, this blogger requests that you save your sorrow for others. For the record, let’s clarify the difference between a permanent disability and a chronic illness, as there is a major difference when it comes to this writer.
A permanent disability is a disability that is with you for the balance of your life, whether acquired from birth or as a result of life circumstance as in a sudden trauma or accident.
A chronic illness is a condition that can be disabling, whose symptoms are recurring, can happen intermittently or frequently and causes one to feel sick or unwell.
As a child Ladyjustice vaguely remembered the “March of Dimes Telethon” against birth defects” featuring among others, the “Schnozzola” Jimmy Durante. However the Jerry Lewis Telethon for Muscular Dystrophy was a staple for Lady justice’s growing up years. After the Telethon aired, invariably, upon returning to school, children and adults would think or verbalize something like, “Oh, you’re one of those”… (Jerry’s kids.) to which LJ would respond, “No, that’s not what I have.”
LJ would “get her revenge” and created this little response: “I’m not one of Jerry’s kids. I’m not going to turn into tissue paper and die in five years. I have cerebral palsy and I’m going to live until I’m 95!” (Well said, Littlegirl justice!)
Many people, including “learned adults” tend to lump all physical disabilities together as if they were indistinguishable. As a little girl, Ladyjustice did not really have “something wrong with her legs” as it appears to the naked eye, but rather damage to the motor area of the brain, and a two month premature birth of unknown etiology (about 30%). Other causes may include lack of oxygen or birth trauma.
“Little girl Justice” needed to make her entrance sooner! LJ’s Mom used to tell people, “Donna got her holidays mixed up… She was supposed to be born on Lincoln’s birthday, but arrived on Christmas Eve instead.” Yes… Christmas Eve is special. Me and Baby Jesus Ha! It is usually overlooked, but LJ doesn’t care at this age.
In case anyone has interest, below are some basic facts regarding the “misunderstood/lumped together” disabilities. As it pertains to cerebral palsy, there are various types of associated impairments which can be present or not, varying in severity from mild to severe depending upon the part of the brain that is damaged.
(See possible associated impairments below).
[There is no chronic pain, weakness or “illness” associated with Ladyjustice’s spastic cerebral palsy….Maybe a little arthritis, occasional balance issues and difficulty bending at the hips or knees known as “contractures”- [a shortening of a muscle due to spasm, or paralysis of opposing muscles]. However, when the normal aging process is overlaid on the developmental disability of CP, it can feel as if the aging process progresses more rapidly. Other than these minor inconveniences, LJ is unaffected in terms of everyday living.
Cerebral Palsy: Literally, cerebral refers to the brain and palsy refers to movement or posture and is a neurologically based impairment. It is characterized by an inability to control motor function, especially muscle control and coordination. There are three major types and a mixed type. It is not degenerative or progressive.
Spastic– inability of the muscles to move in pairs. [One contracts while the other relaxes.] The muscles are always active (high tone) causing rigid, stiff or jerky movement , abnormal muscle growth and deformed joints. ‘Difficulty moving from one position to another, holding or letting go of objects.- Mobility is decreased in colder climates. 80% prevalence
Athetoid– Characterized by involuntary purposeless movements of the extremities grimacing, tongue thrusting. ’Difficulty maintaining posture and sitting (Low tone – similar to a “floppy rag doll).” Other associated problems can be seizures, intellectual impairment, speech, hearing vision swallowing and eating problems. 10% prevalence
Ataxic– Characterized by low muscle tone and poor motor coordination, balance and depth perception. Walking is noted to be a wide gait with feet far apart , and tremors “shakiness” particularly when holding small objects.. 5-10% prevalence
Muscular Dystrophy- Best known as a result of the long-standing Jerry Lewis Telethon) Is characterized by a group of genetically transmitted diseases with progressive atrophy “wasting away” of skeletal muscles with loss of strength, increasing disability and deformity. The basic cause is unknown, but thought to be an inborn metabolism error. Different types are seen depending upon age of onset, types of muscles affected, mode of genetic inheritance and rate of the disease progression. The most common type is known as Duchene’s involving the X chromosome and characterized by muscle degeneration, difficulty walking, breathing and eventual death. Life expectancy is in the late teens to mid-twenties. Incidence = 1 in 3,000
Multiple Sclerosis: Is a progressive disease caused by the attacks on the body’s own immune system. Nerve fibers of the brain and spinal cord lack the insulating sheath (myelin). Those afflicted have periods of exacerbations and remissions. Symptoms include weakness, abnormal sensations in the limbs, vertigo and vision problems. As MS progresses, other symptoms appear such as tremors, decreased motor coordination, pain, extreme emotional liability, speech & swallowing problems, fatigue, loss of bowel & bladder control, changes in memory and cognitive abilities. MS symptoms are worsened by heat. Incidence ranges between 2 and 150 per 100,000. Prognosis is difficult to predict, depending upon many factors. However, in general, the life expectancy of patients is 5 to 10 years lower than those without MS.
The reader can now see that there is wide variability among these disabilities including causes, symptoms, types and progression. (Not to mention treatments not included in this blog). However, to the casual observer, is it any wonder that all of these physical (and more) conditions are “just disabilities” if you do not happen to have a family member or friend with one of the aforementioned disabilities? Ladyjustice can forgive ignorance to a point…. However, once enlightened, there is no excuse!
Now We Return to the Story of 55 Surgeries…..
Can you imagine a young mother in the 1950’s getting up to speed on the previously unknown disability called cerebral palsy in which:
Her fragile, premature daughter had a 50-50 chance of living (before technology and neonatal centers); Her family moves from a first home in the woods (constructed by her carpenter father) to the city in order to access “handicapped classes” and a renowned Children’s Hospital; “Little girl justice” being diagnosed with still another medical problem totally separate and distinct from cerebral palsy that would continue to involve the lives of her and her family members for at least another three years, at another medical facility….and added 33 surgeries to the list.
Juvenile Papilloma of the Larynx involves the growth of numerous warty growths on the vocal cords in children and young adults. The human papilloma virus (HPV) occurs at birth in approximately 300 infants. These growths cover the vocal cords and effectively block off the airway and normal respiration. Therefore, a tracheostomy is performed [construction of an artificial opening through the neck into the trachea/windpipe to allow the person to breath and speak.]
During those three years from approximately 9 to 12 years old, “Little girl justice” was required to put her finger over the opening/stoma to allow her to talk each and every time she had something to say!
These growths required surgical removal every 3 to 6 weeks (under anesthesia) involving a hospital stay of a day and a half in which the vocal cords were “scraped” with instruments to clear the masses. Consequently a hoarse voice quality results and maintenance of the metal equipment inserted into the neck. Typically, these masses discontinue their growth until puberty, allowing surgical closure of the opening and normal breathing and talking. What a joyous time for “Little girl justice!”
A little postscript… Apparently LJ’s growths were so prolific and unusual that her case was written up in a Boston medical journal… probably Otolaryngology and now collecting cobwebs and dust somewhere…
In the 1990’s while working as a speech-language pathologist. Ladyjustice learned from an ear nose and throat physician that …. Had laser surgery been available at the time, the number of surgeries might have been reduced from 33 to perhaps 6!
Wow! In some ways, Ladyjustice would not have traded her “hospital childhood” for there were positives. Her parents indeed tried to provide as much normalcy and fun times as possible… in between surgeries. There were positives… Hartford Hospital and Newington Children’s Hospital staff became “a second family.”
It was a very unique existence and a good story…
Frequent hospitalizations was a visceral experience engrained in a little girl’s memory with all of the familiar sights sounds and smells LJ was a little girl who had to grow up fast and “be a brave little soldier.” God only knows how this blogger’s mother and family “held it all together, “still raised a family with two other children.
LJ has visited each hospital years later and the memories come flowing back…
What specifically was it like? A snapshot follows:
The familiarity of the routine, expectations, and nursing staff at each institution; If “Little girl justice” had to be there for yet another surgery, it was better to “make the best of it.”
- Having many visitors who cared… and the anticipation of going home again;
- Choosing meals following the NPO (nothing by mouth) status after the surgery;
- Playing board games with Mom like Candy land and Chutes & Ladders;
- Going to physical therapy to have muscles stretched. The therapist felt like a “second mother;”
- Receiving comfort/asking to hold the hand of the operating room nurse prior to receiving the anesthesia mask;
- The warm feeling of a plaster cast being wrapped on LJ’s legs after certain surgeries;
- Ice cream and movie night at Newington Children’s Hospital. They rolled the old steel beds into the auditorium on Friday nights. Heaven!
- A steady diet of ginger ale and jello to settle the effects of the awful and formerly used anesthetic–ether– Yuck! We used to say “Little girl justice” was “allergic” rather than suffer the vomiting;
- Plaster casts being removed- Ouch!
- Sadness felt for other kids who never had any visitors – ever!
- Cold temperatures and anesthetic smells while waiting in the ‘holding room” prior to laryngeal surgeries; LJ always asked for a towel to cover her nose…
- Missing out on school and family outings due to being hospitalized so much
- Skimpy hospital gowns;
- “Being on parade” for curious orthopedic doctors wanting to gauge the progress of or need for another surgery. “Walk for us” they used to say… (in the hall in those skimpy nightgowns);
- Having to use heavy metal orthopedic braces that locked and unlocked at the knees.
Sad, but True….. One Hospital Story
A memorable, but somewhat horrific tale speaks to the sickness of a little boy (unlike “Little girl justice”) and the compassion and emotional effect felt by LJ’s father.
During one of LJ’s many hospital stays in recovery, she had a roommate, a very sick little boy. This boy, unbeknownst to his parents, got into the kitchen cupboards and removed a household cleaner (either Comet or Draino- ‘can’t recall) and consumed a considerable amount. This boy sustained severe burns to his mouth throat and internal organs. [This occurred many years before the invention of safety locks].
When LJ’s father saw the grave condition of this little boy, he was so horrified and sad that he went home and immediately inquired about our household products. Although LJ’s mother assured him that they were well secured in high cupboards, he insisted that henceforth, she buy the Comet or whatever, use it once and immediately discard and buy new for the next single use. At the time, such products cost about 39 cents each.
The little boy was not expected to live long and did pass away, LJ thinks… “Little girl justice” may have been told this story as one of life hard lessons. Indeed it has struck with her all of these years…
And so it goes…the sterile medical and eventful childhood of ‘Little girl justice.” She paid a price in more ways than one. However, such valuable lessons could never be taught from a textbook or classroom. Despite it all, Ladyjustice has “survived it all” and doesn’t ask much of life going forward…
Her main objective is to help crime victims’ full time! [From God’s ear to the right employer, please!]