This brother-sister duo reminds us what’s important in life.
…being there for our loved ones…through thick and thin…
This brother-sister duo reminds us what’s important in life.
…being there for our loved ones…through thick and thin…
Got a surprise call from a blogging friend today. Jaclyn and I met months ago in Cat Rambo’s “Blogging 101” class at Bellevue College. I got good vibes from Jaclyn while in class. And she’s every bit as nice as I thought she would be.
During our conversation today, she reminded me what her life is like on a daily basis. For 18 years Jaclyn has been caretaker for her only child. While this doesn’t seem an unusual situation from that of other moms, her situation is unique in that her daughter has a rare disease known as Galactosemia, a milk sugar disorder.
Galactosemia is a rare congenital disorder which affects the body’s inability to convert galactose into glucose. Galactose is a type of sugar, which is a breakdown product of lactose. Lactose is found in milk and milk products, including breast milk. Given that the galactose can not be broken down, it builds up in the body and acts as a poison that can cause serious damage to it‘s carrier(“galactosemia“). “As milk is important to a baby’s diet, early diagnosis is essential to avoid lifelong problems from this potentially fatal disorder.”
The first trace of information that was brought to light about galactosemia was in 1908 by Von Ruess. He composed an article of his findings in an infant with many of the symptoms we now relate to galactosemia. This work has widely been accepted by scientists as the first reported case of galactosemia. However, at this time the diagnosis of galactosemia was not yet possible. It would be nine years before a similar diagnosis of galactosuria was largely accepted by scientists as a hereditary disorder.
At the time Jaclyn’s daughter was born, galactosemia was not yet within the mainstream of medical knowledge. So doctors failed to correctly diagnose her digestive problems. Meanwhile the disease took its toll on the youngster’s body, leaving her permanently handicapped, mentally and physically. Having recently turned 18, the young woman reads at the level of a 4th grader.
Needless to say Jaclyn has been at the forefront of fighting her daughter’s fight to make the most of her life, such as it is. Where schools were not willing to pursue academics at a more challenging level, consigning her daughter to classes for children with special needs, Jaclyn decided to home school instead. With the help of other adults, her daughter is experiencing as full a life as she can. Their assistance also allows my friend some much-needed respite from her 24/7 role as caretaker.
Surprisingly, or maybe not, I never find anything in my friend’s voice to suggest that she is pained to be saddled with her daughter’s predicament. Jaclyn sounds like other moms I know who love their children, and do what needs to be done for them. Jaclyn is always upbeat, never belaboring the fact that her child is, in fact, unlike those now capable of venturing forth to make their own way in the world.
When Jaclyn calls it’s usually to ask how I’m faring with my blog. The last time she phoned it was to suggest an online site where I might want to self-publish. Today she recalled that I’d mentioned that my writing skills were honed when I had served as a paralegal for TWA in NYC. She wondered if I had the title of the book which had been instrumental in my learning to write. I replied that I learned on the job. I was enrolled in classes at night to obtain a paralegal certificate, a condition for the job to which I had already been promoted. So writing legal briefs for the attorneys with whom I worked during the day, quickly instilled me with the skills I still possess today. I learned to organize my thoughts on paper, and offer support for my assertions. Blogging has enabled me to regain my skills as a writer, after a 24-year hiatus.
When I asked with what she was currently involved, Jaclyn explained that she’s trying to secure social security benefits, however meagre, for her adult daughter. We both agreed that government bureaucracy can be mind-boggling. Because galactosemia is unfamiliar to most, she has found it daunting trying to convince bureaucrats of her daughter’s disability which has essentially robbed her of an independent life.
Ending the phone call with her usual laughter, Jaclyn admitted to signing up for Cat Rambo’s class on the writing of fantasy stories. My friend wants to take a breather from reality, and escape to the land of fantasy. God knows she deserves to enjoy a little make-believe.
The last Sunday before Christmas, Liturgically there are no surprises. Advent, the season in which we Catholics prepare ourselves for Christ’s coming, has been celebrated in the same way ever since I was a child. Actually, there might have been a change after the Ecumenical Council.If there was, I couldn’t tell you specifically what. I do remember that as a result of the Council, Mass was no longer spoken in Latin, but rather in English, and the priest faced the congregation, instead of having his back toward them. Both changes were memorable when they first occurred, and for some time afterwards.
But today’s Mass unfolded as usual, until Father Bryan introduced us to a group known as REX, or Religious Experience. It had been organized by a handful of female parishioners to benefit disabled Catholics. They numbered between 10 and 12 individuals, with their ages ranging from the mid-teens to the mid-fifties. There were more men than women. Several had Down Syndrome, with other disabilities not being as readily identifiable. But it was obvious they were all handicapped.
Father Bryan explained that for the past couple of years, the REX had entertained him with their version of the Nativity in the basement of the church. This year they agreed to Father’s request to perform for the congregation, which they did during our Mass.
One of the founding ladies narrated the story, while members of the group enacted the roles, the angel who acts as guide, Mary, Joseph, the innkeeper, the shepherds and the 3 wise men. The infant Jesus was a very realistic-looking, baby doll. The story was simple, and while the actors were not overly expressive, they were still engaging. What garnered them a standing ovation was their genuine commitment to do a good job, which they did, in spades! The looks on their faces were priceless. They seemed not to expect such affirmation of their work. In that moment, they were the least accomplished of God’s children, uplifted to the highest.
The REX bestowed a great gift upon us who have so much more, and oft-times forget that we do. Their joy is simple. Their pleasure is in the small things they achieve, and receive, like our standing ovation which lasted for several minutes. I went to church expecting nothing life altering, and came away changed, if only in a small way. But big enough to instill in me a new appreciation of Christmas, and the liturgy.
father bryan is always full of surprises, ones that make us better christians…hugmamma.
I THINK I’ve experienced tinnitus, “ringing” in the ear, but I can’t be certain, because I tried to ignore whatever it was. My mom often spoke of it, so I thought only elderly people heard “ringing” in their ears. And, of course, I was trying really hard not to get older. Looks like my reaction was the right thing to do.
According to an article in today’s Wall Street Journal, “A Most Annoying Ringtone,” many causes can be blamed for tinnitus. It can result from “hearing loss-due to aging, exposure to loud noise, accidents, illnesses, auditory nerve tumors, wax buildup, drug side effects, history of ear infections, brain injuries from explosive devices, head and neck trauma, TMJ (temporomandibular joint disorder), or hormonal balances.”
Tinnitus, from the Latin root word for “jingle,” is the perception of an external sound when none is there. It varies for people. Some hear a high-pitched buzzing, others hear a “ringing, roaring, hissing, chirping, whooshing or wheezing. It can be high or low, single or multi-toned, an occasional mild annoyance or a constant personal din.” Experts surmise that when hearing is lost in certain frequencies, the brain attempts to fill the void with noise that’s imagined or remembered. Audiologist Rebecca Price, who treats tinnitus in Durham, N.C., at Duke University’s Health Systems, says “Those auditory centers are just craving input.”
The CDC, Centers for Disease Control, estimated that 16 million American adults experienced frequent bouts of tinnitus in 2009. An estimated 2 million are unable to function normally when sleeping, working, concentrating, and interacting with family. Thanks to baby boomers, the elderly population is rising in numbers, as are the incidents of tinnitus. Remarkably 12-year-olds are also complaining of the ailment, according to Jennifer Born, speaking on behalf of the American Tinnitus Association, a nonprofit education and advocacy group. The culprit it seems might be “personal music players cranked up high.” Vets from Afghanistan and Iraq also suffer tinnitus, the “No. 1 service-related disability,” as a result of brain injuries from explosive devices.
Treatment for tinnutis runs the gamut from hearing aids to antidepressants. “The first step in treating tinnutis is usually to determine if a patient has hearing loss and to identify the cause…ear-wax buildup…infections, accidents, aging, medication side effects and noise exposure.” If loss of hearing is reduced, chances are it also dramatically reduces tinnitus, or at least makes it more tolerable for the sufferer, according to Sujana Chandraskhar, a otolaryngologist in New York and chairman-elect of the American Academy of Otolaryngology-Head and Neck Surgery.
Surgery can help as in the case of 42-year-old, New York, pipefitter Frank Scalera, who’s suffered tinnutis since age 15, when a firecracker blew out his eardrum. After 10 surgeries his hearing is restored, and the ringing he’s experienced for 30 years has lessened. Hearing aids help about 40% of patients because they restore “sound in lost frequencies, so the brain doesn’t need to fill in the void. But some also have hyperacusis–in which normal sounds seem unbearably loud–so a hearing aid may be uncomfortable.”
Sound therapy is another treatment option. Soothing external sounds are used to drown out the internal ringing. Some people are relieved by running a fan, a humidifier, or a machine that emits the sound of waves or waterfalls. At night when tinnitus is most noticeable, thereby disrupting sleep, some even prefer to listen to the static on a radio. Hearing aids also intermix soft “shhhsssing” tones to mask the ringing. But these are not usually covered by insurance and are expensive at $2,500+ per ear.
More sophisticated, and costlier at $4,500, is the Oasis by Neuromonics Inc. A device that is similar to an MP3 player, it “plays baroque and new age music customized to provide more auditory stimulation in patients’ lost frequencies as well as a ‘shower’ sound to relieve the tinnitus.” According to the company, the brain is gradually trained to filter out the internal noise. “Users listen to the program for two hours daily for two months, then the shower sound is withdrawn for four more months of treatment.” Duke University political science professor Michael Gillespie, claimed the device helped him after he got tinnitus from an ear infection. He says he became accustomed to hearing the music, and then his brain filled in with less irritating sounds.
Some people find tinnutis a cause for anxiety. As mentioned earlier, I identified the “ringing” in my ears with old age. I would’ve dwelt upon other illnesses associated with the elderly, making me a captive of my own fears. Luckily my bouts of tinnitus only last several seconds. “Researchers long theorized–and have now seen on brain scans–that the limbic system, the brain’s primitive fight-or-flight response, is highly activated in some tinnitus sufferers. Patients often have generalized anxiety disorder or depression and a few become suicidal; but its unclear which came first.” Antidepressants or anti-anxiety medication can bring relief for some. Stress can bring on tinnutis, so that alternative health practices can be helpful, like yoga, acupuncture, deep breathing, biofeedback or exercise. Supplements such as ginkgo, zinc, magnesium, as well as other over-the-counter remedies are advertised to relieve tinnutis, but are not supported by scientific research.
RTMS, repetitive Transcranial Magnetic Stimulation, a new magnetic pulse treatment has served to treat severely depressed patients for years. Some found that it also stopped the ringing in their ears. Patients feel the treatment is “like a mild tapping on the head and brings no harmful effects.” Brain scans are done to identify tinnutis. Those with severe cases are found to suffer abnormal “communication between parts of the brain responsible for hearing and maintaining attention.” Dr. Jay Piccirillo, a otolaryngologist at Washington University in St. Louis, likens rTMS to “shaking an Etch-a-Sketch to erase an old picture.” Pulses are sent through the skull by a magnetic coil that is placed over the auditory cortex outside the head, to disrupt the faulty communications.
Cognitive behavioral therapy has been found to be one of the most effective treatments for tinnutis. Patients are treated for their emotional reactions to the ailment, not the noise itself. ” ‘The goal is to make your tinnitus like your socks and shoes–you’re wearing them, but you’re not actively thinking about them,’ says Dr. Chandrasekhar.” Or as one patient, Mark Church, an entrepreneur and investor, put it ” ‘It’s like living near an airport. After you’ve lived there for a while, you don’t pay attention to the planes…’ ” Having lived with tinnutis for 11 years, Church favors being in his shower, where the water drowns out the noise. Duke University Medical Center psychologist Michelle Pearce, begins therapy by having her patients identify “the automatic negative thoughts they have about tinnutis.” One claimed no one would marry her, while others felt their lives were over. Working with them, Dr. Pearce helped them realize that their lives didn’t revolve around tinnutis, that it was only one aspect which could be managed.
The local, evening news ran a segment about the growing effects of tinnutis, especially amongst youngsters. At fault it seems is the ramping up of noise levels with the invention of iPods and the like. Looks like what use to be an old age issue is now open to all ages. It’s not something I want for myself at 61, so it’s unfortunate that 12 year olds can now suffer “ringing” in their ears as well. It took me 50 years to experience what can affect them in their youth… if they’re not careful.
before their time, here’s hoping youngsters don’t get old…hugmamma.