From The Editor, A Compilation of Lettersfrom Sanford J. Siegel,
compiled by Landy Thomas. Please tilt phone horizontally to read if on mobile.
January 1997-October 2001 / Volume 1, Issue 1-Volume 4, Issue 2
Letter 1
“Sandy Siegel is a champion you want on your side.
Sandy Siegel is someone who will have your back.
Sandy Siegel is a dreamer.
Sandy Siegel is a humble leader.
Sandy Siegel is full of passion and hope.
Sandy Siegel is a listener.
Sandy Siegel is someone who cares.”
—Lydia Dubose
What has remained of July 29, 1994?
After months of tests,
therapy,
and so many questions,
and so few answers.
Doctors and
nurses and
therapists,
—ambiguous, difficult
to understand.
Theories, reluctance.
Any future?
Risks,
probability,
Statistics.
Life without
Reassurance.
Confusion, no conviction.
Lonely and
frustrating times.
Pauline,
THE very special person.
Pauline,
a kindergarten teacher,
a truly
remarkable person who
has taught me much about
life.
We live.
We search.
We want.
We need.
We hope you all
understand that you are not alone.
Take good care of yourselves
and each other.
—Sandy
Letter 2
“Sandy Siegel is generous. Because of their experience, he and Pauline have been able to help many others. They stuck with it no matter what. That is very kind and courageous.”
—Angel Simpelo
Every good intention.
Ample opportunities
to develop good
strategies
and
patience
for
searching for the great cosmic
balance in life. In Their Own
Words,
members provide us
insightful,
sensitive
perspectives.
We are devoted,
responding to people
who contact us looking
for help—
for information—
for advice.
There is much that needs to be done—
newsletters,
brochure,
membership
directory,
survey research—
these contacts
are a constant reminder
about our purpose.
Understand? Think about
your own
fear,
anxiety and
concern
when you were told.
I have received beautiful letters and phone calls
from many of you. I am always touched by
your kindness, compassion, and generosity.
Wonderful and good people—we all struggle.
Do not become discouraged. We are getting
there, and in the meantime, we ask for your
patience. Pauline and I wish all of you the best;
please take good care of yourselves
and each other.
—Sandy
Letter 3
“Sandy is a remarkable human being, someone who means so much to so many. My family and I are blessed to not only know him and call him a friend, but he is chosen family. Sandy wears his tender and vast heart on his sleeve. The immense love and sacrifice of time, energy, and advocacy he put forth to build this community was out of love. Love for Pauline and her quality of life; love for their family. It’s that kind of love that grows a community, that creates change, and improves the well-being of other lives, including the lives of children, and makes giant advances with small, steady steps. Some days, I still wish that I never had to know about the organization because it would mean my child would not have to live with the ramifications of his diagnosis. But I also don’t know who I or my family would be without Sandy’s beloved friendship and his enormous, vulnerable, and tender heart.”
—Rebecca Whitney
I will begin.
I promise to continue the work.
I thank you for your patience
and understanding.
My goal is to yield good results.
We fervently believe in the work;
it offers us an important tool.
Our membership is growing
quite rapidly,
quadrupled numbers
in a year and a half.
People are just beginning
to find us. We are being found by the world,
thanks to wonderful work performed by Jim Lubin.
Our website, visited by thousands!
Our membership looks like the United Nations.
Our membership is a community.
We are a community,
a tremendous
diversity of cultures
and languages.
We are men and women, boys
and girls.
We are different
races and ethnicities.
We come
from every walk of life,
from every economic class, and
from every religious heritage.
We are a community.
We share
a common interest,
a concern that has become integral.
A part of all our lives.
It is a common interest that no one else understands quite like we do;
that no one else appreciates quite like we do.
None of us willingly
selected membership in our community—
all would gladly turn in their membership card
if given the option.
But our membership is a community.
A community
with a shared history of experiences.
A community
with a shared language—
a community
with a shared concern,
a shared desire to educate,
to support,
to encourage.
We are a community
so long as we are communicating.
Communication is the life-blood:
how we are held together.
Grow and flourish.
Expand and contract and expand.
New members appear
frightened,
confused.
Support,
encouragement and
information begin to flow immediately.
The communication goes on day and night, every day.
It goes on between members of a real community.
Recognize what contact means for the development
and the cohesiveness of our community.
Emotionally and
socially and
psychologically,
when a group of people
are brought together,
for even a short period of time,
who share something
that no one else in the world shares—
bonds accelerate and intensify.
This is important. Please,
take every opportunity to engage
in this communication. Find other people.
Volunteer. Come to the conferences.
Take good care of yourselves
and each other.
—Sandy
Letter 4
“Sandy Siegel is one of the most kind, caring, and passionate people I have ever met. He wears his heart on his sleeve and allows everyone he speaks with to feel welcomed and heard. Sandy has fought for the rare neuroimmune community for the past three decades, perhaps harder than anyone else in the world, because he cares so deeply about the people affected by these disorders. I am so thankful to have met Sandy and to call him a friend.”
—Krissy Dilger
An experience I have had—
when editing the
“In Their Own Words” articles,
An articles I was working on described a person’s
reaction to their severe pain: an attempted suicide.
Words came to mind immediately;
“Is this something I want to have communicated?”
“Is the description of his suicide attempt too personal for our newsletter?”
Depression is a critical issue for many.
Phone calls from people in the middle of the night
who need to talk through their dark thoughts
and sense of hopelessness.
A sense of despair.
Emotionally rocked…
sad,
angry,
frustrated,
frightened.
Who was I going to protect by not sharing these words?.
When we say you are not alone,
we really have to mean that you are not alone.
When you are so depressed
that you are not sure you even
want to see tomorrow, you need
to be able to feel these feelings,
you need
to be able to have these thoughts,
and you need
to be able to share these thoughts
and feelings
with each other.
None of these issues
are easy for anyone.
If we can’t talk about them,
how can we get help for them?
And if we are not made to feel
comfortable talking about them,
how can we feel normal
while having these problems?
Well, you are not alone.
And you are normal,
whatever it is to be normal.
Many of you are afraid to fall
and embarrassed when it happens.
You experience considerable grief,
embarrassment and frustration
about all of these bodily functions
that just don’t function like they used to.
You are anxious
to do things alone
and are angry about the loss
of some or much of your independence.
And many of you are
very depressed. Really,
you are not alone. I
have been reminded,
what responsibility I have.
There are times when I cry
while reading the surveys
and entering the information;
particularly
the information about the children.
I will try to make the best judgments
about what is published in this newsletter.
I hope and pray that today our members
find themselves without pain—with hope,
and comfort, and with peace.
I wish that for all of you. Please,
take good care of yourselves
and each other.
—Sandy
Letter 5
“Sandy is a fighter. Sandy and Pauline were fighting for me years before I ever heard the words “transverse myelitis.” For over 30 years, Sandy has advocated for our rare neuroimmune disorder community. He saw an immense need for resources and support and has dedicated so much time and effort to ensure no one else goes through one of these diagnoses alone. Sandy is one of the best people I know, and I am so lucky I get to call him a friend.”
—GG deFiebre
Being a caregiver is difficult to face.
Complicated:
there is no education or training you receive
for this job.
Learn how, caregiver. Sometimes our loved ones
do improve
and the job does get easier. And sometimes, our loved ones
do not get better,
and the job becomes more and more difficult.
It is not a job
people are applying for; it just happens: life.
It takes tremendous devotion
and intensity, to love with great care and nurturing.
These people perform
their tasks with diligence and competence—people behave
with incredible responsibility
and loyalty. The tasks are not easy—care, throughout
the day and night
is asking a lot of a person. Caregivers are
emotional, spiritual
supporters—they are schedulers, chauffeurs, therapists,
shoppers, organizers, homemakers.
Gladiators with the medical and insurance. Should a person
require long-term rehabilitation
and therapy, the caregiver is in the process alone, and there is nothing
easy or convenient.
There is little in life experience, training or education that prepares a person
for the issues they have to face
as a caregiver. You are going to be making this up as you go.
I wrote the following words to
Pauline after we lost our 16-year old dog, who we both loved very much:
“The really wonderful thing
about life is that there is constant change; it is also a really frightening part of life.
Turmoil is a constant.
These relationships are so complicated because people often have difficult times
traversing the journey of turmoil;
it is done on the inside, a constant battle of emotions and perceptions.
A one-person operation.
But when you are in a relationship, you become a part of a dynamic.
You have to relate and adapt to your person
as a part of their dealing with all of the turmoil. How that process
is negotiated and balanced
is an important factor in how relationships are maintained or destroyed.
Let each other into the process
and grow from it, or you can cut each other out and be pulled apart from it.
As with all else
in the relationship, you influence each other even in this process. You can
allow each other to feel safe
to share the turmoil and nurture each other, or you can feel defensive
or vulnerable toward the other person
and close them out. All very complicated stuff. Being there for each other
can make us stronger.”
As I wrote these words to her, my thoughts and feelings went back
to the times when
Pauline had first contracted TM. Our going through the experience
of Pauline’s TM
has made us stronger. I wish I had some magic formula to explain
why some people can accept
the things that happen to them and find a way to be positive about
their current life circumstances.
It is a blessing that they have that skill and that view of the world
and themselves. I just marvel
at caregivers—these people have taught me something of the capacity
of the human spirit.
What they are capable of giving out of love is truly incredible.
Caregivers, my heroes!
Caregivers! You, too, are not alone! Please take good care of yourselves
and each other.
—Sandy
Letter 6
“Sandy is intentional. He doesn’t just think about the now for our community, but also the future. He inspires us as staff to take action with purpose and to make sure that everything we do aligns with the needs of our community members.”
—Skye Corken
I hope that you are all doing well.
People are finding us from all over the world.
Our membership is thirteen hundred people.
Numbers grow, as do our responsibilities
It has been an uphill battle. Very few successes,
but we are not discouraged. We are learning
the ropes, telling our story to the right audience.
We believe we are laying a good foundation.
We are working feverishly, making you all a future.
We are so grateful to those who continue
to support our efforts by donating their time
and expertise to write articles for our newsletters.
Take good care of yourselves
and each other.
—Sandy
