Helpless
Couldn’t protect my little sister
Pain
Pray
Relief
Tempered steal
Strong beyond measure
Stronger
Braver
Courageous
Faith
Be informed
Love
Remember what we are living for
Prepare us for something much greater
Research
Scary disease
One person’s disease is not other person’s disease
Struggle
Aware
Ask questions
Part of you [but] does not [en]compass all of you
Worried
Future
Emotional
Horrible disease
Be thankful for every day, hour, minute, and second
Effect
You cannot dwell on what might happen
Not letting it control her
Confused
Uncertain
Do research
Terrified
Family history
Determined
Stop at nothing to reach a goal
Know more
Be patient
Laugh
She rocks
When an individual is given life-altering news, the
potential internal backlash could become detrimental to his or her well-being.
When diagnosed with MS, the news seems to be immensely devastating because of
the lack of information one receives or one may know. Multiple Sclerosis, in and
of itself, is a disease that very few people understand. What can happen during
a life altered with MS is terribly unpredictable and cause an array of
emotions – confusion, terror, fear, anger, sadness, grief – which can seem,
from the outside looking in, bleak.
When an individual is diagnosed with MS, the person he or
she was before the diagnosis soon disappears. In its place, another life is
born, so to speak.
Before my diagnosis, I was a selfish, cruel, and unpredictable
human being. Though my family has always been undeniably important in my life,
for a couple of years, I was purely concerned with what I wanted. Period. No
one else seemed to matter to me, and to a certain extent, during that time of
my life, I was okay with that.
Often, when an individual is diagnosed with MS, talks about
how he or she changed, how he or she handled the diagnosis, what he or she
was/is scared of, etc. are constantly at the forefront of many conversations.
What many fail to realize is, although one person is diagnosed with MS, the
diagnosis affects more than just that individual. Although MS does not have me,
I have MS which means that those I am in constant contact with also must endure
the disease, as well. Often, the feelings of those who are indirectly affected
with MS seem to be pushed aside. It is in my experience that these “other
individuals” have lives that change, as well. They may not have MS. They may
not have to directly endure the daily struggles, fears, pain, anxieties of MS,
but indirectly, their lives can change as much as the life of their loved one,
spouse, significant other, family member, friend, co-worker, neighbor…
It is incredibly important that the voices of those affected
with MS are heard. Those affected with MS are more than just the individual
with the disease. I believe it to be extremely important to understand how an
outsider looking in – friends, family, significant others – feels about how the
disease has affected me, what they are scared of concerning MS, and how they
feel about the disease in general.
These are their
words.
My brother is a 32 year old husband and father of two. He is
immensely intelligent, captivatingly charming, and highly protective of those
he loves. Throughout my struggles, he and I have gotten closer. He is, by far,
one of my strongest support systems, but I never truly knew how my MS diagnosis
changed him nor did I realize how strong he has been for me during my
struggles…
1)
How did you feel when you heard the news of
Desiree’s MS diagnosis?
Helpless. I have always been very protective of my sister. I can still
remember incidents from our childhood of bullies trying to pick on her
resulting in my angered retaliation on her behalf. But with this, I for the
first time felt like I couldn’t protect my little sister and it was the worst
kind of feeling I could have.
2)
What are you scared of concerning MS?
The pain my sister has to endure. The unknown and even mortality have
never truly scared me as much as having to stand by and watch my loved ones be
in pain. Every time I hear of another issue that causes Desiree pain, I sit and
pray that [somehow] I might be able to take her place so that she might find
some relief. I still pray that prayer today.
3)
How has Desiree’ changed since being diagnosed
with MS?
She has become tempered steal. Not cold, but strong beyond measure. Just
like the tempering of a sword, she has come through the fire a stronger and
more brave woman. It’s a change that I am thankful everyday she has gone
through. I just wish it could have come under better circumstances.
4)
How has the diagnosis changed you?
I have redirected my personal development to become as strong and
courageous as my sister. She has become one of my most important role models
and a living example of some of the most important characteristics every good
person should strive to possess.
5)
What would you tell others about being a family
member/friend/significant other of someone with MS?
Stay strong. The world [may] seem like it is crashing down around you and
that you are losing someone you care deeply for, but the fact is that having
faith and courage during times like these can be better therapy than anything
modern medicine can develop. The therapy of a good support system is
immeasurable and invaluable. Also, be informed. It is absolutely true that
knowledge is power. You cannot be a truly supportive person without having the
knowledge of what is happening. Finally, don’t forget to love. There is no
emotion within the human experience stronger and with more healing power [than]
love. Become the medication your loved one so desperately needs.
6)
What is your wish for Desiree’ when continuing
her life with MS?
That
she never loses her strength, courage, and faith. When we give up or give in,
that is when life begins to take a turn for the worse. As long as we remember
what we are living for and have faith that the trials we are enduring have been
put in place to prepare us for something much greater then we will always
succeed.
I recommend reading
“Multiple Sclerosis: A Guide for Families” by Rosalind C. Kalb, Ph. D
For privacy purposes, the following name has been changed:
Jane came into my life about four years ago after starting a relationship with my father. Though the prerequisite to have a relationship with my father did not include knowledge of MS, she has taken it upon herself to learn about the disease to try to understand my struggles.
Jane came into my life about four years ago after starting a relationship with my father. Though the prerequisite to have a relationship with my father did not include knowledge of MS, she has taken it upon herself to learn about the disease to try to understand my struggles.
1)
How did you feel when you heard the news of
Desiree’s MS diagnosis?
I am not sure when your dad actually told me that you had been diagnosed
with MS. Since I was a special ed[ucation] teacher, I wanted to know more about
MS and looked into it. I did research it more when you came to stay with us for
those three weeks.
2)
What are you scared of concerning MS?
MS is a scary disease, but I have found out that one person’s disease is
not another person’s disease. I hope that you will continue to stay where you
are in it, but I also realize that is not going to happen.
3)
How has Desiree’ changed since being diagnosed
with MS?
I really cannot comment about since being diagnosed, but can comment on
the fact that in the last few years I think you have changed. I see that you
struggle some days and hate that. I wish that there was something I could do.
Somehow take it away, but reality says that I cannot. I do know that you are
happier than what you have been and I think Chris is good for you. When Desiree
is happy and stress free she is well.
4)
How has the diagnosis changed you?
I hope I am more aware of your cues when you need to be left alone to
chill, when you need to talk, or when you just need someone there to listen.
5)
What would you tell others about being a family
member/friend/significant other of someone with MS?
I have told you as well as others to research MS, to ask questions either
of Desiree or someone that also has the disease. Get that persons perspective
of their disease.
6)
What is your wish for Desiree’ when continuing
her life with MS?
I
wish you to be happy, to fulfill your life as you wish. MS is unfortunately
apart of you it does not compass all of you but it does.
I recommend reading
“Awkward Bitch: My Life with MS” by Marlo Donato Parmelee.
I have known my sister-in-law, Eden, for over a decade. She
came into my life as my brother’s girlfriend and then as his wife. My relationship
with her has given me the strength to question everything and find ways to
improve the overall quality of my life. She is a strong, determined, outspoken,
and fierce woman. The way she constantly makes me laugh is one of the numerous
reasons why I love her as much as I do. However, she is an incredible wife to
my brother, absolutely amazing mother to my niece and nephew, and my constant
voice of reason when I need one. I never knew how my diagnosis of MS affected
her as much as it has and am pleasantly surprised of her devotion to understanding this disease.
1)
How did you feel when you heard the news of
Desiree's MS diagnosis?
I
was confused. I thought she was one of Jerry's Kids, but then I realized that
was MD, not MS. Then I was uncertain about what was going on. I had to ask a
lot of questions and do some research.
2)
What are
you scared of concerning MS?
I'm
terrified that Desiree' will be on some kind of trial medication that will
mutate her into a superhuman that feels no pain and shoots spoons through her
hands. But seriously, looking at the family history of MS, I am afraid that one
of my kids will develop MS.
3)
How has Desiree' changed since being diagnosed
with MS?
She's
more determined. Well, determined is an understatement. She will stop at nothing
to reach a goal that she has set for herself.
4)
How has the diagnosis changed you?
I know more about MS.
5)
What would you tell others about being a family
member/friend/significant other of someone with MS?
Be patient. Learn. Support. LAUGH.
6)
What is
your wish for Desiree when continuing her life with MS?
That
she rocks it like a hurricane.
I recommend reading “Multiple
Sclerosis Fact Book” by Richard Lechtenberg, M.D.
1)
How did you feel when you heard the news of
Desiree's MS diagnosis?
When Desiree told me that she had MS, I was first scared and even more so
worried for her and also us, as we were just starting our life together.
Wondering what would this mean for our relationship and our future together. At
the time I had next to no knowledge about MS and how it was or could affect
Desiree. It was very emotional to hear everything that she has been through,
overcome, and was currently dealing with on a daily basis. All I wanted to do
is hold her, and make everything better, if I only could.
2)
What are you scared of concerning MS?
I am scared that this horrible disease will take away Desiree from me as
I know her, however I try not to think of it in this matter and be thankful for
every day, hour, minute, and second that we get to spend together doing things
that make us happy.
3)
How has Desiree’ changed since being diagnosed
with MS?
He is unaware of how I was before the diagnosis. Although I have
explained to him the person I used to be, he continually focuses on the person
I am today.
4)
How has the diagnosis changed you?
Since learning that Desiree has MS, I would say that I look at life
somewhat differently. I try to be more aware of my surroundings, activities and
the risks I take doing so, not only knowing how the outcome would affect myself
but the woman I love.
5)
What would you tell others about being a family
member/friend/significant other of someone with MS?
That you cannot dwell on what might happen, but to enjoy today and be
thankful that you have today.
6)
What is your wish for Desiree when continuing
her life with MS?
That
she is able to continue to pursue her education, career path, and starting a
family. All while she is controlling this horrible disease and not letting it
control her.
I recommend reading “Me
and My Shadow: Learning to Live with Multiple Sclerosis” by Carole MacKie and
Sue Brattle
The books mentioned will not only help but will greatly
inform those who read them. Yes, MS is an unpredictable disease that causes a
terrifying world. However, with more knowledge and support, being able to
endure and overcome the daily obstacles will become less difficult. We are stronger, more independent, immensely driven and capable human beings. Having MS will never take those qualities away. Ever.
I promise.
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