I am Lou
My name is Megan Mishork and Marilyn Silva
When you first think of the word "family", one tends to do so in the
most basic terms- "all the members of a household under one roof or a
group of persons sharing common ancestry". Beyond that definition, there
is much room for debate and discussion. Families can share many common
belief systems, physical characteristics, personality traits, and
personal histories. But, they can also hold vast differences in
interests and experiences.
Mishork and Marilyn Silva are a living definition of all of these interpretations. They have many things
in common- their wit, their love of travel, and, sadly, a shared history
and genetic commonality. They come from a family that has had been
fighting and living with ALS for over five generations.
And now, they
each are living with it too.
Megan with her dad Jeff, and Aunt Marilyn in 1991
Marilyn Silva was diagnosed in May of 2009 at the age of 51. She had lost her
father and grandmother to ALS, both died at age 42. Her aunt died at the age of 19.
This disease has also taken the lives of her three brothers.
brother died just three years ago", she shared. "It has not skipped a
generation in our family from as far back as we have researched."
a month of her diagnosis, Marilyn had decided to move on to hospice.
"Now it has hit our family hard, both myself and my 25 year old niece
are dying from it at the same time." Marilyn said.
is receives her care and treatment at The ALS Treatment and
Research Center at UCSF. Marilyn's sister, Mari Betti is actively
involved in her care. "Although it is a very difficult job, I am very
fortunate to be here to help with such wonderful, brave people." Mari
Megan Mishork was only 24 when she was diagnosed November 12, 2008.
"I had dealt
with ALS for the past 17 years. My father died when I was six from this
disease." Megan shared. "Since then, my Uncle Johnny and Uncle Jimmy have passed. Also,
my great grandmother, my grandpa and great aunt
prior to being diagnosed with ALS, I was about to celebrate six years
with my boyfriend and was wishing to get married. There was nothing more
in life that wanted than being a mom. I was saving money to build up my
nest egg in hopes to buy my first home. I was at the beginning of the
rest of my adult life and excited for my future.
"At 24 years old, you
can imagine the shock I felt when my doctor turned to me and said 'You
have ALS'. I always knew it was a possibility, now it was a certainty."
Megan Mishork in 2008
Megan and her team Mishork Misfits
at the 2009 East Bay Walk to Defeat ALS
Once a resident of Orange County, Megan began receiving her care and
treatment and worked with the Orange County chapter. She has since
relocated to Northern California, to be closer to her family,
and is currently receiving her care and treatment at The Forbes Norris
Megan's mother Linda Bracciotti feels an incredible blend
of agony and pride for her daughter's fight with ALS. "I lived knowing
that I was going to have to bury one of my kids in my lifetime." she
says. "It has been like the ticking time bomb in the room. My son has
fortunately has tested negative, but that doesn't help my brave
daughter. The craziness and the headaches with just trying to navigate
care system for just the basics to cope with the disease are a constant
Life has had many other changes and disappointments for Megan since her
diagnosis. But she has maintained her sense of humor and sense of
optimism. "Sure- I am no longer with the man I thought I wanted to spend
the rest of my life with. I'll
never walk down the aisle on my wedding day and that's if someone would
marry me. I will never experience being a mom.
"I had to sell or give away all of my things and moved back in with my
parents. All so someone could spoon-feed me, dress me, bathe me, and
yes, wipe my butt." she said, with a chuckle in her voice. "Which by the way, there is a very small, but prestigious
list of those who are allowed to wipe my royal caboose." she jokes.
"But I am pretty lucky to have the opportunity of knowing how and
approximately when I am going to die," she shares. "I have learned there is no reason
to ever worry. It is an incredible freedom to do whatever I want as long
as it makes me happy and I am not hurting anyone. I don't feel guilty
about not going to the gym or spending too much money on things I enjoy
doing. I don't worry about the extra calories in eating dessert, or
being lazy, or getting tattooed."
"It is a privilege to know, and to work with Marilyn and Megan", says
Madelon Thomson, Director of Patient and Family Services for the Greater
Bay Area Chapter. "They have such great senses of humor. I admire their
perspectives and focus on living in the now, while taking advantage of
medical opportunities for treatment. Their extended family is
absolutely amazing in the depth and scope of the support and love for
Megan and Marilyn"
Mari Betti, also shared her thoughts. "In working on this
article, I again realized how strong these two women are. They are my
sister, my niece, and they are my ‘bestest’ friends."
The Mishork family are passionate advocates in doing everything that
they can to help in the fight. Whether it is traveling to Washington DC
to participate in Advocacy efforts, or help to raise funds for
research. But, they also recognize that there are families that facing
incredible challenges with the disease now. So, they were proud to
participate in the 2009 Easy Bay Walk to Defeat ALS to help to support
the chapter and it's Patient and Family Services and
Programs. Megan is also very active in the social media community, on
Twitter and Facebook. She also writes a well known blog-
Mari Betti shares, "I know the months ahead are going to be difficult,
watching my two ladies progress. They both do indeed have a great
support system which I hope and pray will carry us all through this
terrible disease once again. I do hope I live to see a cure and
definitely hope I do not live to see another member of my family die
from this, " she said.
Marilyn shares her point of view. "My niece
Megan, and I each struggle everyday to keep our quality of life as'
normal' as possible. With everyday, we hope to hear a cure will be
found but in our lifetime we know that is not possible."
"We both hope
that through research and public awareness of this disease that someday
there will be a cure or at least a treatment for our children and future
generations." Marilyn says.
"I have four children of my own, so if I can or could do
anything to help fight this disease I will do it."
Megan offers a similar perspective. "For me, just bringing this disease to public attention would be truly a
gift I would leave in the hopes that, someday, no one else would have to
suffer with such a horrible disease.
"I have 15 cousins who are at risk
and odds are half of them will suffer and die from ALS. Most patients
get two to five years after diagnosis, looking at my family history, we
get less than a year. I would never want anyone to feel sorry for me. I
knew I had a 50/50 chance of dying from ALS, but never thought I would
endure it at 25 years old. This is my reality, my life, and I just
"I do not believe I will live to see a cure." Megan said. "But I hope in
sharing my story I will bring some awareness to this disease and my
efforts will make me the last one of my family to die from it."
November 30, 2009
Marilyn Silva and Megan Mishork