Thanksgiving is my favorite holiday.
Just when the year threatens to become frenetic, Thanksgiving intervenes with a hearty feast and family warmth.
When I was about twelve, I wrote a letter to my aunt Claralou praising her for the peaceful and welcoming atmosphere of her annual Thanksgiving celebration. She displayed my letter on her refrigerator door, and it appeared there again year after year as a remembrance of the true spirit of Thanksgiving.
My mother helped her and the other women with the turkey roasting in the oven for what seemed like forever, while my father, my uncle, and the other men drank beer, talked, and tended to us eight cousins stuffed into the house.
Nobody was a smoker, but on Thanksgiving my dad and my uncle would light up cigars and smell up the den where the football classics were playing on TV and I tried to learn how to use a nutcracker. One year they let us try a few puffs. I felt cool and manly.
Thanksgiving put the brakes on schoolwork, and, in college, when I spent the holiday on the East Coast, it saved me from completely exhausting myself.
I also like Thanksgiving because, of all the holidays, it has resisted commercialization the most. Aside from a trip to the supermarket for dinner items, the urge to buy is absent. (Black Friday is definitely not about Thanksgiving, but Christmas.)
Now in her 80s, Aunt Claralou still celebrates Thanksgiving in the same home, but, living in California with my own family, I haven’t had the chance to spend the holiday there.
My parents are gone – my mother the victim of Huntington’s disease in 2006 at the age of 68, my father, the “HD warrior,” dead at nearly 82 from a broken heart a little more than two years ago.
Ever since we learned of my mother’s diagnosis the day after Christmas in 1995, Thanksgiving has taken on a more profound meaning. For me, it really is a time to take stock of all the good in my life – even though I have lived in wait and dread of HD after testing positive in 1999.
Despite the enormous worries about our future, my family and I are thriving. My wife continues to work full-time as a teacher. Last weekend she ran her sixth half-marathon since taking up running in early 2010. Our “miracle baby,” who tested negative in the womb, is performing well in sixth grade and preparing to take the private-school entrance exam. And, as I look to my 52nd birthday in less than two months, an age at which HD had already stricken my mother, I have displayed none of the classic symptoms of HD.
Along with my wife and daughter, I have experienced the simplest yet profoundest joys of life (click here to read more). Last Saturday our daughter played her last soccer game of the season. As she played one of her best games, I doubled on the sidelines as the assistant coach and team videographer, and my wife cheered them on and made sure the half-time snacks were ready. Later in the afternoon we attended the year-end party, where I was moved by the girls’ unity and laughter and the realization that we parents were a team just as united in our devotion to our daughters.
I feel a special debt of gratitude to the many people engaged in the fight against HD: the members and administrators of the four organizations combating the disease; the HD people and their families fighting the good fight each day; the physicians and caregivers; and the scientists and pharmaceutical companies on a quest for treatments and a cure.
I am continually moved by the circle of close friends who pray for and support for me in numerous ways – especially Norman Oder, the editor of this blog and my “HD alter ego.”
I also want to thank you, my readers, for sharing with me the harrowing odyssey of living gene-positive for a condition described as “the devil of all diseases.” In posted comments, on Facebook, through e-mail, and even in phone calls, you have expressed your unflagging support for me personally and confidence in our collective fight to defeat HD.
Knowing that you are listening, challenging, and cheering me on provides me with an immense emotional strength, and hearing about your valiant efforts against HD inspires me.
As I share both a ham and turkey with our guests on Thursday, I’ll raise a toast of thanks to you.
Showing posts with label warrior. Show all posts
Showing posts with label warrior. Show all posts
Monday, November 21, 2011
Wednesday, March 23, 2011
Huntington’s disease, loneliness, and love
Imagine how lonely you would feel if you were a young person who knew you might never get married and have children because you faced a cruel and deadly genetic disease.
This is the harsh reality of many young people affected by or at risk for Huntington’s disease, which robs individuals of their abilities to walk, talk, think, and swallow. In the case of an affected male father, the children can inherit a far worse form of the disease, known as juvenile Huntington’s, with onset as early as infancy.
Starting in the teen years and extending into their mid-30s, dating for these people can become an incredibly difficult affair, instantly laden with fear and complex calculations about the future. Even though most standard testing centers won’t allow testing before age 18, those calculations can begin as soon as teens develop an interest in sex and procreation.
When will my symptoms start or worsen?
Should I opt for preimplantation genetic diagnosis to assure my children don’t have HD?
How will I be able to raise my children?
How will my spouse care for me, and for how long?
Why would anybody want to enter a relationship charged with such huge health and emotional challenges?
Will I end up alone?
Will anybody ever love me?
Understanding the pain
These are just some of the many questions that pass through the minds of young people in HD-affected families. The implications can become more serious as a person passes from at-risk to gene-positive status and ultimately on to the early symptoms.
As an HD-positive but currently asymptomatic person, I viscerally understand the emotional pain of young people in this predicament. Even though I have been fortunate to have a supportive wife, I have heard numerous depressing stories of the break-up of marriages and relationships where the mate could no longer handle the responsibility of caregiving.
And, as I await effective treatments to stave off the disease and advocate for the cause, I have experienced my own cascade of difficult emotions.
After writing about this in my last blog article, I received a comment from Nancy Hess, who tested negative for HD, about the deep loneliness we in the HD community can feel: “So often we find ourselves helping others comfort us when talking about HD. This can bring on an unexpected loneliness but then, as one might say to one's self from time to time, ‘Get over yourself!’ The truth is, there are only going to be a few in our lives who get it, and can stick with us through the dark passages.”
Fear of a lonely and love-less life dominate the stories of young people. Watch, for example, the short video “Five Women Speak from the Heart” on the homepage of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego).
“I felt like having kids was the number one thing in my life,” says Whitney, an at-risk woman whose father developed HD. “I felt like: is my life over?”
“The only thing I fear is just being alone, not having somebody, because I wouldn’t want to put anybody through what I’ve gone through,” says Kristen, whose mother was stricken with the disease. “So I couldn’t expect anybody to love me like my father loved my mother.”
Crying all day long
Recently, Jiyeon Kwon, a 19-year-old man with Huntington’s, wrote in an HD group on Facebook about the social burdens of the disease.
Sometimes I regret telling anyone about my diagnosis. Now I know that some of my friends pretty much define me by it. They probably look at me and see "the guy with Huntington's disease" or "the guy that's going to be dead in ten years." And some people treat me differently and let me get away with stuff they wouldn't let anyone else get away with. It's just frustrating, I guess. It's funny how people who you thought were good friends make a totally different image of you just because of one disease you happen to have. [quoted with Jiyeon’s permission]
We can gain even deeper insight into the emotional impact of HD on relationships by listening to words of the unaffected partner, as in this message that I recently received from a female college student:
I have an amazing and wonderful boyfriend who I plan on spending the rest of my life with. I found out a while back that his mother has Huntington's disease. To be honest, when I found out I didn't research much on what this disease was about. (I have also never met her.) So I didn't realize until today (from my science teacher) that my boyfriend has a 50 percent chance of inheriting this. I've never been so heartbroken and confused in my life. I don't know what to do. I don't know what to think. He's not one to really talk much about this so I don't even know the right way to bring it up. I've done nothing but cry all day long....
I'm so new to all of this, and all I know is all the negative things I've read on the internet. I'm scared for my boyfriend so much but I don't know if it's wrong to show my fear in front of him.
True, enduring love
Indeed, in these circumstances, love must be true to thrive and later endure.
My father and HD-stricken mother’s marriage was far from perfect, but they held on through the fifteen-plus years of her illness. My dad, the “Huntington’s disease warrior,” fed, bathed, and clothed Mom daily until she went into a nursing home in mid-2005. He visited her each day at the home until her death in February 2006.
Because Mom was falling ever more frequently, Dad probably should have relinquished his caregiver role even earlier. But then she may have died even sooner.
In this era of instant hero status, heroism has lost its meaning. Everybody, it seems, can be a hero for the proverbial 15 minutes. But Dad – and the millions of other caregivers in America looking after HD, Alzheimer’s, and other neurologically disabled people – are the real heroes. Nobody knew about him, but he got into the HD trenches every day for 15 years.
In my case, I am greatly blessed with the unbending support of my wife. We learned of my mother’s diagnosis just three years into our marriage and before attempting to have children. As a recent immigrant and still without an established career, she could have responded to the daunting prospect of caring for an HD-stricken husband and having affected children by taking the easy way out: returning to her home country of Brazil and her old job.
But she stuck with me then – and after I tested positive in 1999. The lasting bond we forged was further cemented by our good fortune in having our “miracle baby,” who tested negative in the womb. We know all too well the fear of passing on the defective gene.
In 2009 and 2010 she ran in a half-marathon to benefit HDSA. (Click here to read more about us.)
Support for families
I have gained an important lesson from my parents’ experience and my own family’s situation, as we face my inevitable incapacitation: HD families need greater support from HDSA, physicians, and local social services and clinics. As so many have stated before, HD is a family disease affecting everybody within the nuclear unit and often reaching far into the extended family.
Despite the immense health and social challenges of HD, many families and caregivers steadfastly support young people with the disease. The family of Terry Leach, a San Diego teen who first developed HD as an infant, has shown great love and togetherness in caring for him (click here to read more).
Many spouses and caregivers accompany their loved ones to the local support group. Some caregivers even attend after the patient has gone to a nursing home and can no longer join the group. In other cases, at-risk individuals are unwilling to participate in the group, but their potential caregivers attend anyway.
Doing the right thing
It’s also encouraging to see the young people who are standing by their partners and spouses. I was touched to read the comment to the Facebook HD group by one young woman who was “having the best week. I just got home from Disney World with my amazing boyfriend. We had the best time together. He takes such excellent care of me. I used my wheelchair at Disney World. It worked out great. I love my boyfriend with all my heart. I am so blessed that he is in my life.”
With such stories of commitment and my own years of experience in mind, I wrote back to the young, heartbroken girlfriend of the at-risk college student:
I think the best advice I can give is to be completely honest with yourself and your boyfriend. Do NOT hide or avoid or deny the subject of HD. It's best to meet it openly and head-on, although always with patience, gentleness, and kindness. I am a firm believer that hiding the truth can be convenient and easy in the short run but ends up doing very serious damage in the long run. You're doing the right thing by learning about the disease and all that it could mean for your boyfriend. And it's important for you to stand by him as a girlfriend and as a friend. We cannot predict the future, but even if you end up not being in each other's life down the road, you will have done the right thing by supporting him at this point.
This is the harsh reality of many young people affected by or at risk for Huntington’s disease, which robs individuals of their abilities to walk, talk, think, and swallow. In the case of an affected male father, the children can inherit a far worse form of the disease, known as juvenile Huntington’s, with onset as early as infancy.
Starting in the teen years and extending into their mid-30s, dating for these people can become an incredibly difficult affair, instantly laden with fear and complex calculations about the future. Even though most standard testing centers won’t allow testing before age 18, those calculations can begin as soon as teens develop an interest in sex and procreation.
When will my symptoms start or worsen?
Should I opt for preimplantation genetic diagnosis to assure my children don’t have HD?
How will I be able to raise my children?
How will my spouse care for me, and for how long?
Why would anybody want to enter a relationship charged with such huge health and emotional challenges?
Will I end up alone?
Will anybody ever love me?
Understanding the pain
These are just some of the many questions that pass through the minds of young people in HD-affected families. The implications can become more serious as a person passes from at-risk to gene-positive status and ultimately on to the early symptoms.
As an HD-positive but currently asymptomatic person, I viscerally understand the emotional pain of young people in this predicament. Even though I have been fortunate to have a supportive wife, I have heard numerous depressing stories of the break-up of marriages and relationships where the mate could no longer handle the responsibility of caregiving.
And, as I await effective treatments to stave off the disease and advocate for the cause, I have experienced my own cascade of difficult emotions.
After writing about this in my last blog article, I received a comment from Nancy Hess, who tested negative for HD, about the deep loneliness we in the HD community can feel: “So often we find ourselves helping others comfort us when talking about HD. This can bring on an unexpected loneliness but then, as one might say to one's self from time to time, ‘Get over yourself!’ The truth is, there are only going to be a few in our lives who get it, and can stick with us through the dark passages.”
Fear of a lonely and love-less life dominate the stories of young people. Watch, for example, the short video “Five Women Speak from the Heart” on the homepage of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego).
“I felt like having kids was the number one thing in my life,” says Whitney, an at-risk woman whose father developed HD. “I felt like: is my life over?”
“The only thing I fear is just being alone, not having somebody, because I wouldn’t want to put anybody through what I’ve gone through,” says Kristen, whose mother was stricken with the disease. “So I couldn’t expect anybody to love me like my father loved my mother.”
Crying all day long
Recently, Jiyeon Kwon, a 19-year-old man with Huntington’s, wrote in an HD group on Facebook about the social burdens of the disease.
Sometimes I regret telling anyone about my diagnosis. Now I know that some of my friends pretty much define me by it. They probably look at me and see "the guy with Huntington's disease" or "the guy that's going to be dead in ten years." And some people treat me differently and let me get away with stuff they wouldn't let anyone else get away with. It's just frustrating, I guess. It's funny how people who you thought were good friends make a totally different image of you just because of one disease you happen to have. [quoted with Jiyeon’s permission]
We can gain even deeper insight into the emotional impact of HD on relationships by listening to words of the unaffected partner, as in this message that I recently received from a female college student:
I have an amazing and wonderful boyfriend who I plan on spending the rest of my life with. I found out a while back that his mother has Huntington's disease. To be honest, when I found out I didn't research much on what this disease was about. (I have also never met her.) So I didn't realize until today (from my science teacher) that my boyfriend has a 50 percent chance of inheriting this. I've never been so heartbroken and confused in my life. I don't know what to do. I don't know what to think. He's not one to really talk much about this so I don't even know the right way to bring it up. I've done nothing but cry all day long....
I'm so new to all of this, and all I know is all the negative things I've read on the internet. I'm scared for my boyfriend so much but I don't know if it's wrong to show my fear in front of him.
True, enduring love
Indeed, in these circumstances, love must be true to thrive and later endure.
My father and HD-stricken mother’s marriage was far from perfect, but they held on through the fifteen-plus years of her illness. My dad, the “Huntington’s disease warrior,” fed, bathed, and clothed Mom daily until she went into a nursing home in mid-2005. He visited her each day at the home until her death in February 2006.
Because Mom was falling ever more frequently, Dad probably should have relinquished his caregiver role even earlier. But then she may have died even sooner.
In this era of instant hero status, heroism has lost its meaning. Everybody, it seems, can be a hero for the proverbial 15 minutes. But Dad – and the millions of other caregivers in America looking after HD, Alzheimer’s, and other neurologically disabled people – are the real heroes. Nobody knew about him, but he got into the HD trenches every day for 15 years.
In my case, I am greatly blessed with the unbending support of my wife. We learned of my mother’s diagnosis just three years into our marriage and before attempting to have children. As a recent immigrant and still without an established career, she could have responded to the daunting prospect of caring for an HD-stricken husband and having affected children by taking the easy way out: returning to her home country of Brazil and her old job.
But she stuck with me then – and after I tested positive in 1999. The lasting bond we forged was further cemented by our good fortune in having our “miracle baby,” who tested negative in the womb. We know all too well the fear of passing on the defective gene.
In 2009 and 2010 she ran in a half-marathon to benefit HDSA. (Click here to read more about us.)
Support for families
I have gained an important lesson from my parents’ experience and my own family’s situation, as we face my inevitable incapacitation: HD families need greater support from HDSA, physicians, and local social services and clinics. As so many have stated before, HD is a family disease affecting everybody within the nuclear unit and often reaching far into the extended family.
Despite the immense health and social challenges of HD, many families and caregivers steadfastly support young people with the disease. The family of Terry Leach, a San Diego teen who first developed HD as an infant, has shown great love and togetherness in caring for him (click here to read more).
Many spouses and caregivers accompany their loved ones to the local support group. Some caregivers even attend after the patient has gone to a nursing home and can no longer join the group. In other cases, at-risk individuals are unwilling to participate in the group, but their potential caregivers attend anyway.
Doing the right thing
It’s also encouraging to see the young people who are standing by their partners and spouses. I was touched to read the comment to the Facebook HD group by one young woman who was “having the best week. I just got home from Disney World with my amazing boyfriend. We had the best time together. He takes such excellent care of me. I used my wheelchair at Disney World. It worked out great. I love my boyfriend with all my heart. I am so blessed that he is in my life.”
With such stories of commitment and my own years of experience in mind, I wrote back to the young, heartbroken girlfriend of the at-risk college student:
I think the best advice I can give is to be completely honest with yourself and your boyfriend. Do NOT hide or avoid or deny the subject of HD. It's best to meet it openly and head-on, although always with patience, gentleness, and kindness. I am a firm believer that hiding the truth can be convenient and easy in the short run but ends up doing very serious damage in the long run. You're doing the right thing by learning about the disease and all that it could mean for your boyfriend. And it's important for you to stand by him as a girlfriend and as a friend. We cannot predict the future, but even if you end up not being in each other's life down the road, you will have done the right thing by supporting him at this point.
Monday, January 10, 2011
Memories of the DNA car
We all measure life by milestones: the first steps, graduating from high school, the big raise, sending a child off to college.
For many Americans, cars symbolize important stages in life, from practicing in one for the driver’s license test to buying that first shiny new one to driving the family on summer vacations.
We spend so much time in cars that they seem like members of the family.
For me, gene-positive for Huntington’s disease, my 1999 Corolla CE took on a very special meaning. Like a quiet but supportive partner, it literally carried me through many crucial moments.
Buying an Altima
With a deep tinge of nostalgia, I parted with my Corolla on January 7. In 2009, thanks to President Barack Obama’s efforts to get the economy moving, my wife and I refinanced our mortgage and included in the package a new swimming pool, aka the “Obama stimulus pool." As 2010 came to a close, my wife urged me to take advantage of the auto companies’ big sales, designed to put some pep into that sluggish industry.
I hesitated, but the moment seemed too good to pass up. So, on December 30, the day before my 51st birthday and just four days before the big sales expired, we took the plunge and bought a 2011 Nissan Altima 2.5 S. We got a great deal on the car and the loan.
I felt great driving the car home, especially because the Altima checked in as the top-rated family sedan in the Consumer Reports car ratings.
The Corolla, my first new car
After the holidays, I got to work on getting the Corolla ready for sale.
Important memories flooded into my mind, beginning with the night my wife and I bought the car on a Friday night in fall 1998.
The Corolla was my very first new car, which we financed with an auto loan.
Prior to that, I had a long history with used vehicles.
Used cars, family, and HD
My very first car was a 1970 Volkswagen Beetle that I bought in high school for $500. In 1982, I received a 1977 Oldsmobile Cutlass S as a gift from my maternal grandparents after graduating from Yale.
My grandfather and I had spent many an hour driving around the Cleveland area in the several Cutlasses that he owned. I couldn’t have imagined a better graduation gift.
Eight years after my grandfather died of heart failure at age 79, my mother received her diagnosis of Huntington’s disease.
I could only conclude that Gramps had carried the genetic defect at a low level of impact and, in one of the strange twists when the male is the HD carrier, passed it on to my mother in a more pronounced form, dooming her to more than 15 years of symptoms and ultimately death at age 68 in 2006. My grandmother, who died at age 87, also of heart failure, remained sharp until almost the very end. She never displayed any HD symptoms.
In 1991 I bought my next car, a 1987 Dodge Shadow, from my father. Soon thereafter he became the “HD warrior” who cared for my mother until she had to enter a nursing home in mid-2005. The Shadow was the car my wife and I shared at the time of Mom’s diagnosis in 1995.
A painful scrape
I’m not at all superstitious, but the Corolla came with an almost prophetic message attached. Its California license plate was “4DNA921.” DNA was playing a bigger and bigger role in my life as my mother deteriorated and I worried about my own at-risk status.
Not long after the purchase, in June 1999, I decided to get tested for HD. We needed to know my status to plan for avoiding the disease in the child that we had just conceived.
As I have described in other blog entries (click here to read more), the news of my positive result left me disoriented.
As I attempted to maneuver the still new-looking Corolla out of the space in the office building’s parking garage, I turned the wheel too sharply. The car pulled too far to the right, causing the right front fender to scrape against a column.
I was able to rub out most of the mark. Nobody ever noticed, in fact. But I knew exactly where the scratches were. For many years, just looking at the car brought painful memories of that fateful moment and the feelings of confusion and anger that followed.
License tag 4DNA921
By then, “4DNA921” had taken on an entirely new meaning. The car constantly reminded me that I was HD-positive.
But the tag was also like a badge that I displayed to other members of the HD cause as I became ever more active in the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego). The Corolla was my DNA-powered, anti-HD car.
For many Americans, cars symbolize important stages in life, from practicing in one for the driver’s license test to buying that first shiny new one to driving the family on summer vacations.
We spend so much time in cars that they seem like members of the family.
For me, gene-positive for Huntington’s disease, my 1999 Corolla CE took on a very special meaning. Like a quiet but supportive partner, it literally carried me through many crucial moments.
Buying an Altima
With a deep tinge of nostalgia, I parted with my Corolla on January 7. In 2009, thanks to President Barack Obama’s efforts to get the economy moving, my wife and I refinanced our mortgage and included in the package a new swimming pool, aka the “Obama stimulus pool." As 2010 came to a close, my wife urged me to take advantage of the auto companies’ big sales, designed to put some pep into that sluggish industry.
I hesitated, but the moment seemed too good to pass up. So, on December 30, the day before my 51st birthday and just four days before the big sales expired, we took the plunge and bought a 2011 Nissan Altima 2.5 S. We got a great deal on the car and the loan.
I felt great driving the car home, especially because the Altima checked in as the top-rated family sedan in the Consumer Reports car ratings.
The Corolla, my first new car
After the holidays, I got to work on getting the Corolla ready for sale.
My 1999 Corolla CE
Important memories flooded into my mind, beginning with the night my wife and I bought the car on a Friday night in fall 1998.
The Corolla was my very first new car, which we financed with an auto loan.
Prior to that, I had a long history with used vehicles.
Used cars, family, and HD
My very first car was a 1970 Volkswagen Beetle that I bought in high school for $500. In 1982, I received a 1977 Oldsmobile Cutlass S as a gift from my maternal grandparents after graduating from Yale.
My grandfather and I had spent many an hour driving around the Cleveland area in the several Cutlasses that he owned. I couldn’t have imagined a better graduation gift.
Eight years after my grandfather died of heart failure at age 79, my mother received her diagnosis of Huntington’s disease.
I could only conclude that Gramps had carried the genetic defect at a low level of impact and, in one of the strange twists when the male is the HD carrier, passed it on to my mother in a more pronounced form, dooming her to more than 15 years of symptoms and ultimately death at age 68 in 2006. My grandmother, who died at age 87, also of heart failure, remained sharp until almost the very end. She never displayed any HD symptoms.
In 1991 I bought my next car, a 1987 Dodge Shadow, from my father. Soon thereafter he became the “HD warrior” who cared for my mother until she had to enter a nursing home in mid-2005. The Shadow was the car my wife and I shared at the time of Mom’s diagnosis in 1995.
A painful scrape
I’m not at all superstitious, but the Corolla came with an almost prophetic message attached. Its California license plate was “4DNA921.” DNA was playing a bigger and bigger role in my life as my mother deteriorated and I worried about my own at-risk status.
Not long after the purchase, in June 1999, I decided to get tested for HD. We needed to know my status to plan for avoiding the disease in the child that we had just conceived.
As I have described in other blog entries (click here to read more), the news of my positive result left me disoriented.
As I attempted to maneuver the still new-looking Corolla out of the space in the office building’s parking garage, I turned the wheel too sharply. The car pulled too far to the right, causing the right front fender to scrape against a column.
I was able to rub out most of the mark. Nobody ever noticed, in fact. But I knew exactly where the scratches were. For many years, just looking at the car brought painful memories of that fateful moment and the feelings of confusion and anger that followed.
License tag 4DNA921
By then, “4DNA921” had taken on an entirely new meaning. The car constantly reminded me that I was HD-positive.
But the tag was also like a badge that I displayed to other members of the HD cause as I became ever more active in the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego). The Corolla was my DNA-powered, anti-HD car.
“Wow, now that’s an interesting license plate,” an HD caregiver remarked to me one time.
Our first pregnancy ended in a miscarriage, but in October 1999 we conceived again. In January 2000, we received the news that our daughter-to-be had tested negative in the womb for HD. That was one of the happiest moments of our lives – to be matched only by the day in June 2000 when we drove our “miracle baby” home from the hospital in the faithful Corolla.
Over the next decade I took the Corolla on countless assignments for HDSA-San Diego. I drove to board meetings at the San Diego Chargers headquarters, where board member Bill Johnston, the team’s PR director, arranged for us to meet. The Corolla seemed puny and insignificant next to the top-of-the-line Mercedes Benzes and other super-luxurious cars in the Chargers’ parking lot. But I didn’t mind. I had the DNA on my side.
I drove the Corolla to Celebration of Hope Galas, HD support group meetings, interviews with members of the HD community, and meetings of the California state stem-cell agency’s oversight committee. The Corolla transported thousands of copies of the HDSA-San Diego newsletter, which I edited and published from 2001 to 2007.
Last February I drove the Corolla to the Parker Palm Springs hotel for the fifth annual international research conference of the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.” At such a tony resort the Corolla once again seemed out of place, but it steadfastly carried me to my destination and back.
Balancing frugality and safety
For the longest time, I vowed to myself to keep the Corolla – and the DNA plates that came with it – until researchers found a cure for Huntington’s.
At the time of the sale, it had only 83,000 miles. I wanted to avoid sinking $25,000 into the new Altima because, like so many HD families, we need to budget conservatively. I will inevitably develop HD symptoms, and that will mean a dramatic loss in income and long-term financial security for my family. I also very much liked the fact that the Corolla got 29 miles per gallon in the city and 40 mpg on extended trips.
But my wife pointed out that the Corolla was starting to have problems. Indeed, although the engine could last much longer – I have a friend who drives a 1978 Corolla! – last year I had to spend several hundred dollars on a new visor and repair work on the starter.
My wife also frequently reminds me of the way an SUV blind-sided the Corolla in May 2009, sending me to the hospital and causing more than $3,000 in damage to the vehicle. Since then, she has become ever more worried that another accident could seriously harm or even kill me or our daughter, whom I drive to school and other activities practically every day. Recently, she started saying she would forbid me to take our daughter in the Corolla!
The 1999 Corolla has just a driver’s and passenger air bag, whereas the new Altima has six, along with many other features that make it safer. The Altima is also a much bigger car.
No matter how serious a financial crisis HD might bring for our family, I could not risk our safety on the road.
Opting for some comfort
On the more optimistic side, my wife convinced me that it was time to move up from the Corolla and treat myself with some comfort and enjoyment while driving.
The Corolla is a starter car, she pointed out. At age 51 and with perhaps not much time left before symptoms start, I deserved to drive something better.
At the dealership we could have gotten the base model Altima for $5,000 less than we spent.
“The $5,000 we’d save could go into our daughter’s education fund,” I told my wife.
But, after thinking about how my wife and I would have to manually adjust the driver’s seat with a clumsy system, I opted for the more comfortable S model. I also added such conveniences as a power seat and Bluetooth cell phone system.
The S model includes a leather steering wheel with radio controls accessible to the fingertips. This last feature is especially important, because my daughter constantly asks me to switch stations while I’m driving.
Compared to other cars in the market, the Altima is far from luxurious. But it’s definitely a big step up from the Corolla.
A new car, a new era in HD research
I’ll receive the plates for this car in the next month or two.
I’m wondering: what letters will I get this time?
The Corolla symbolized frugality, worry about HD, and my intense activism for the cause.
What will the Altima symbolize in 2011 and beyond?
In part, I purchased the car because just before Christmas I received a clean bill of health from my doctor at the local HD clinic. Because my mother most likely became symptomatic in her late forties, every moment that I live free of symptoms is a bonus (click here to read more).
When we bought the Corolla in 1998, only five years had passed since scientists had discovered the HD gene. Relatively little hope existed for my generation of gene-positive individuals.
In contrast, in late 2010 we could feel far more optimistic as scientists sought ways to turn some of the 700-plus potential treatment targets into actual medicines.
There has never been a more exciting time for HD research. Although there is no guarantee of treatments or a cure, for the first time our community can feel some confidence that help is on the way.
The upcoming drive to Palm Springs
My own confidence has grown in the last few years as I have observed CHDI pursue such revolutionary projects as its collaboration with Isis Pharmaceuticals, Inc., to stop HD at its genetic roots.
As I’ve written recently, I will deliver the keynote address at the next CHDI conference in Palm Springs on February 7.
With the Altima, I’ll drive to Palm Springs much more comfortably and confidently.
Let’s all hope that this new confidence will bring a major research breakthrough in 2011.
Our first pregnancy ended in a miscarriage, but in October 1999 we conceived again. In January 2000, we received the news that our daughter-to-be had tested negative in the womb for HD. That was one of the happiest moments of our lives – to be matched only by the day in June 2000 when we drove our “miracle baby” home from the hospital in the faithful Corolla.
Over the next decade I took the Corolla on countless assignments for HDSA-San Diego. I drove to board meetings at the San Diego Chargers headquarters, where board member Bill Johnston, the team’s PR director, arranged for us to meet. The Corolla seemed puny and insignificant next to the top-of-the-line Mercedes Benzes and other super-luxurious cars in the Chargers’ parking lot. But I didn’t mind. I had the DNA on my side.
I drove the Corolla to Celebration of Hope Galas, HD support group meetings, interviews with members of the HD community, and meetings of the California state stem-cell agency’s oversight committee. The Corolla transported thousands of copies of the HDSA-San Diego newsletter, which I edited and published from 2001 to 2007.
Last February I drove the Corolla to the Parker Palm Springs hotel for the fifth annual international research conference of the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.” At such a tony resort the Corolla once again seemed out of place, but it steadfastly carried me to my destination and back.
Balancing frugality and safety
For the longest time, I vowed to myself to keep the Corolla – and the DNA plates that came with it – until researchers found a cure for Huntington’s.
At the time of the sale, it had only 83,000 miles. I wanted to avoid sinking $25,000 into the new Altima because, like so many HD families, we need to budget conservatively. I will inevitably develop HD symptoms, and that will mean a dramatic loss in income and long-term financial security for my family. I also very much liked the fact that the Corolla got 29 miles per gallon in the city and 40 mpg on extended trips.
But my wife pointed out that the Corolla was starting to have problems. Indeed, although the engine could last much longer – I have a friend who drives a 1978 Corolla! – last year I had to spend several hundred dollars on a new visor and repair work on the starter.
My wife also frequently reminds me of the way an SUV blind-sided the Corolla in May 2009, sending me to the hospital and causing more than $3,000 in damage to the vehicle. Since then, she has become ever more worried that another accident could seriously harm or even kill me or our daughter, whom I drive to school and other activities practically every day. Recently, she started saying she would forbid me to take our daughter in the Corolla!
The 1999 Corolla has just a driver’s and passenger air bag, whereas the new Altima has six, along with many other features that make it safer. The Altima is also a much bigger car.
No matter how serious a financial crisis HD might bring for our family, I could not risk our safety on the road.
Opting for some comfort
On the more optimistic side, my wife convinced me that it was time to move up from the Corolla and treat myself with some comfort and enjoyment while driving.
The Corolla is a starter car, she pointed out. At age 51 and with perhaps not much time left before symptoms start, I deserved to drive something better.
At the dealership we could have gotten the base model Altima for $5,000 less than we spent.
“The $5,000 we’d save could go into our daughter’s education fund,” I told my wife.
But, after thinking about how my wife and I would have to manually adjust the driver’s seat with a clumsy system, I opted for the more comfortable S model. I also added such conveniences as a power seat and Bluetooth cell phone system.
The S model includes a leather steering wheel with radio controls accessible to the fingertips. This last feature is especially important, because my daughter constantly asks me to switch stations while I’m driving.
Compared to other cars in the market, the Altima is far from luxurious. But it’s definitely a big step up from the Corolla.
A new car, a new era in HD research
I’ll receive the plates for this car in the next month or two.
I’m wondering: what letters will I get this time?
The Corolla symbolized frugality, worry about HD, and my intense activism for the cause.
What will the Altima symbolize in 2011 and beyond?
In part, I purchased the car because just before Christmas I received a clean bill of health from my doctor at the local HD clinic. Because my mother most likely became symptomatic in her late forties, every moment that I live free of symptoms is a bonus (click here to read more).
When we bought the Corolla in 1998, only five years had passed since scientists had discovered the HD gene. Relatively little hope existed for my generation of gene-positive individuals.
In contrast, in late 2010 we could feel far more optimistic as scientists sought ways to turn some of the 700-plus potential treatment targets into actual medicines.
There has never been a more exciting time for HD research. Although there is no guarantee of treatments or a cure, for the first time our community can feel some confidence that help is on the way.
The upcoming drive to Palm Springs
My own confidence has grown in the last few years as I have observed CHDI pursue such revolutionary projects as its collaboration with Isis Pharmaceuticals, Inc., to stop HD at its genetic roots.
As I’ve written recently, I will deliver the keynote address at the next CHDI conference in Palm Springs on February 7.
With the Altima, I’ll drive to Palm Springs much more comfortably and confidently.
Let’s all hope that this new confidence will bring a major research breakthrough in 2011.
Saturday, September 18, 2010
'More to lose than ever'
Living gene-positive for Huntington’s disease frequently distresses me as I worry about the inevitable onset of its destructive symptoms and the impact my illness will have on my wife and daughter. I have struggled mightily to cope – a theme of so many entries in this blog.
But, as so many at-risk people have pointed out over the years, the threat of Huntington’s also forces them to put life in perspective and live it more intensely.
In early 2005, as I was just starting this blog, an old friend best summed up my situation by contrasting it with his relatively care-free life: “I envy you. I feel immortal. I don’t believe I’m going to die. But you know you’re going to die, and so you can live your life more fully” (click here to read more).
Life’s priorities
I especially struggled this past week with fear and anger about HD. On September 13, I published “Living in limbo,” in which I described the harrowing “waiting game” that I and so many other people who have tested positive for genetic diseases face as we are forced to imagine a bleak future. (This is akin to what one gene-positive woman calls “genetic roulette.”)
I felt overwhelmed after writing that entry and reading the responses (posted comments, e-mails, and Facebook remarks) of other gene-positive individuals and their relatives.
Feeling a sudden urge to protect my family, life’s priorities flashed through my mind.
I recorded these thoughts in my blog notes:
Our job is to pass down our culture/history/values to the next generation. I feel this acutely. Just as important now to do daughter’s soccer practice as attend an HDSA-SD board meeting. Feel in my bones and my blood: our time here is limited and the prime directive is to guarantee the survival and success of the next generation. Nationally: get rid of debt. Locally: active in community. At home: prepare daughter [for life].
Personal growth
I awoke the next morning at 2:30. I was very agitated and couldn’t get back to sleep. Somehow I got through the workday with the usual good game face, but I didn’t get relief from the agitation and adrenalin rushes until returning from work in the afternoon. I turned off the ringer on the phone and took a long nap. I awoke feeling disoriented.
Luckily, on September 16, I had my bi-weekly session with my psychotherapist, the person who understands my mind probably better than anybody, especially after my mother became ill with HD (and died in early 2006) and my father, the Huntington’s warrior who cared for her for 15 years and died a year ago. Besides the usual worries about HD, I’ve become more anxious because of the approaching first anniversary of his death (click here to read more).
I told my therapist about the difficult feelings generated by the “Living in limbo” entry, including the huge transition I've begun as I become more public about my situation with HD. On September 24 I will make my first-ever public presentation about HD to an American audience. (Click here for an entry on the talk I gave in Brazil last June.)
As we worked together to sort out the painful feelings, we reflected on how I’ve evolved as an activist for HDSA, the Huntington’s Disease Society of America. She also pointed out how much I’ve grown because of the need to confront HD.
A valuable insight
“You have more to lose than ever,” she said.
I interrupted her and asked for a slip of paper to write down this phrase. Right then and there I decided that it would become the topic of my next blog entry.
“You’re right!” I said about her insightful comment.
It’s impossible to know how my life would be today if it weren’t for the threat of HD.
But I believe that I’m a better person in many ways.
Gaining perspective
To begin with, I have indeed gained perspective. The preoccupations of the past now seem like mere details, and I’ve calmed my tightly-wound personality considerably.
The other day my daughter was late for an orthodontist’s appointment. I patiently and quietly waited for her to get ready.
As we got into the car, she asked, “Dad, aren’t you angry that we’re late?” She was wondering why I wasn’t upset with her.
“Will getting upset make the minutes on the clock go backwards?” I asked her. She thought a few seconds and responded, “No.”
“Being late once in a while is okay,” I continued. “Ideally, we should be early for things, so that we’re not late. There are many things we have to be on time for, like school. But it’s not the end of the world if we’re late once in a while.”
In her words, a lot of times I “freak out” about things. But it’s happening less.
It was a small but valuable lesson.
With ever greater appreciation for the gift of life, I’ve become more sensitive to my family’s needs.
A multi-dimensional life
I also feel that I’m a more tolerant person. This helps in my professional relationships and in working with the HD community.
Indeed, my HD activism has built many more layers onto my life: blogging, website development, volunteer recruitment, advocacy, fundraising, the translation of research advances into terms understandable to the HD community, and the building of mutual support within the community. I sometimes feel as I’m living in several dimensions at the same time.
I’ve definitely improved as a writer, because living at risk for HD has led me to explore the depths of human emotions about life and death. I’ve felt the impact of the worst kind of denial, but also the utmost of courage and compassion.
As I’ve written on several occasions, confronting HD has led me to a clearer understanding of my religious faith. I now see faith as going hand in hand with the movement to stop HD.
I feel inspired to help others. I’ve pledged that when and if the cure for HD comes and I finally break free of its destructive shackles, I will channel my energy into another volunteer cause.
The secrets of life
In sum, I feel more mature and more aware.
I think I’m beginning to understand some of the precious secrets of life. Possessions, power, and fame in the end are irrelevant. Love, sharing, and dedication are what count.
Clearly I am far from perfect. Nobody is. I stand only near the starting line of this process.
But in reaching this point, I now have a clearer view of the great potential of my life yet to be unlocked.
The threat of Huntington’s disease has brought me a load of worries. But it’s also given me so much more to feel good about in my life.
I indeed have more to lose than ever, and that’s why I’m ever more anxious to prevent HD from cutting me off in my prime.
But, as so many at-risk people have pointed out over the years, the threat of Huntington’s also forces them to put life in perspective and live it more intensely.
In early 2005, as I was just starting this blog, an old friend best summed up my situation by contrasting it with his relatively care-free life: “I envy you. I feel immortal. I don’t believe I’m going to die. But you know you’re going to die, and so you can live your life more fully” (click here to read more).
Life’s priorities
I especially struggled this past week with fear and anger about HD. On September 13, I published “Living in limbo,” in which I described the harrowing “waiting game” that I and so many other people who have tested positive for genetic diseases face as we are forced to imagine a bleak future. (This is akin to what one gene-positive woman calls “genetic roulette.”)
I felt overwhelmed after writing that entry and reading the responses (posted comments, e-mails, and Facebook remarks) of other gene-positive individuals and their relatives.
Feeling a sudden urge to protect my family, life’s priorities flashed through my mind.
I recorded these thoughts in my blog notes:
Our job is to pass down our culture/history/values to the next generation. I feel this acutely. Just as important now to do daughter’s soccer practice as attend an HDSA-SD board meeting. Feel in my bones and my blood: our time here is limited and the prime directive is to guarantee the survival and success of the next generation. Nationally: get rid of debt. Locally: active in community. At home: prepare daughter [for life].
Personal growth
I awoke the next morning at 2:30. I was very agitated and couldn’t get back to sleep. Somehow I got through the workday with the usual good game face, but I didn’t get relief from the agitation and adrenalin rushes until returning from work in the afternoon. I turned off the ringer on the phone and took a long nap. I awoke feeling disoriented.
Luckily, on September 16, I had my bi-weekly session with my psychotherapist, the person who understands my mind probably better than anybody, especially after my mother became ill with HD (and died in early 2006) and my father, the Huntington’s warrior who cared for her for 15 years and died a year ago. Besides the usual worries about HD, I’ve become more anxious because of the approaching first anniversary of his death (click here to read more).
I told my therapist about the difficult feelings generated by the “Living in limbo” entry, including the huge transition I've begun as I become more public about my situation with HD. On September 24 I will make my first-ever public presentation about HD to an American audience. (Click here for an entry on the talk I gave in Brazil last June.)
As we worked together to sort out the painful feelings, we reflected on how I’ve evolved as an activist for HDSA, the Huntington’s Disease Society of America. She also pointed out how much I’ve grown because of the need to confront HD.
A valuable insight
“You have more to lose than ever,” she said.
I interrupted her and asked for a slip of paper to write down this phrase. Right then and there I decided that it would become the topic of my next blog entry.
“You’re right!” I said about her insightful comment.
It’s impossible to know how my life would be today if it weren’t for the threat of HD.
But I believe that I’m a better person in many ways.
Gaining perspective
To begin with, I have indeed gained perspective. The preoccupations of the past now seem like mere details, and I’ve calmed my tightly-wound personality considerably.
The other day my daughter was late for an orthodontist’s appointment. I patiently and quietly waited for her to get ready.
As we got into the car, she asked, “Dad, aren’t you angry that we’re late?” She was wondering why I wasn’t upset with her.
“Will getting upset make the minutes on the clock go backwards?” I asked her. She thought a few seconds and responded, “No.”
“Being late once in a while is okay,” I continued. “Ideally, we should be early for things, so that we’re not late. There are many things we have to be on time for, like school. But it’s not the end of the world if we’re late once in a while.”
In her words, a lot of times I “freak out” about things. But it’s happening less.
It was a small but valuable lesson.
With ever greater appreciation for the gift of life, I’ve become more sensitive to my family’s needs.
A multi-dimensional life
I also feel that I’m a more tolerant person. This helps in my professional relationships and in working with the HD community.
Indeed, my HD activism has built many more layers onto my life: blogging, website development, volunteer recruitment, advocacy, fundraising, the translation of research advances into terms understandable to the HD community, and the building of mutual support within the community. I sometimes feel as I’m living in several dimensions at the same time.
I’ve definitely improved as a writer, because living at risk for HD has led me to explore the depths of human emotions about life and death. I’ve felt the impact of the worst kind of denial, but also the utmost of courage and compassion.
As I’ve written on several occasions, confronting HD has led me to a clearer understanding of my religious faith. I now see faith as going hand in hand with the movement to stop HD.
I feel inspired to help others. I’ve pledged that when and if the cure for HD comes and I finally break free of its destructive shackles, I will channel my energy into another volunteer cause.
The secrets of life
In sum, I feel more mature and more aware.
I think I’m beginning to understand some of the precious secrets of life. Possessions, power, and fame in the end are irrelevant. Love, sharing, and dedication are what count.
Clearly I am far from perfect. Nobody is. I stand only near the starting line of this process.
But in reaching this point, I now have a clearer view of the great potential of my life yet to be unlocked.
The threat of Huntington’s disease has brought me a load of worries. But it’s also given me so much more to feel good about in my life.
I indeed have more to lose than ever, and that’s why I’m ever more anxious to prevent HD from cutting me off in my prime.
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