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Lesson Learned in a Support Group
By Antoinette Brilliant
Let me start but saying I am not an
RSD sufferer but I live with RSD every day. While I am not
one of the founding members of our support group, I have been
since the day my husband, who has RSD in his left ankle, decided
it was time for him to meet other people with this devastating
condition. Until then, I felt that we were the only people
in the world who had their lives shaken and turned upside
down. But I quickly learned I was wrong. Instead, I met, and
continue to meet new people whose lives were changed by some
act of fate that continues to transform strangers into friends.
Everyone reaches a point that changes his or her perspective
on life. Whether it’s having your heart broken, giving birth,
the death of a loved one, or RSD, no one is immune from physical
and emotional pain. At the same time, when the world seems
against you, that is the exact time you are growing. Helen
Keller said, “Character cannot be developed in ease and quiet.
Only through experience of trail and suffering can the soul
be strengthened, vision cleared, ambition inspired and success
achieved. Silver is purified by fire and so are we. It in
the most trying times that our real character is shaped and
revealed.”
A support group can help give perspective to your pain and
the changes in your life. You may see others confined to wheelchairs
while you are able to walk without assistance or with occasional
use of a cane. You may hear a friend say her arm feels like
it’s on fire and realize that yours isn’t so bad today. While
it is hard to be in a good mood when you are in pain, our
group meetings are always in a positive light. There is always
more laughter than tears, more cheerful thoughts than depressing
ones. And I think most members walk away, having forgotten
about their pain for an hour or two.
In a recent survey of our members,
we learned that for some people their RSD brought certain
relationships to new levels of understanding and tolerance.
Unfortunately for others, it also drew them away from loved
ones. The support of family is critical to any type of care.
We all hear stories of families rallying around a cancer patient
while undergoing chemotherapy, or a heart patient trying to
recover from bypass surgery. Even happy occasions like the
birth of a child find family and friends offering hope. This
is not always true with RSD patients. While family may offer
help they may not truly understand the pain you are suffering
or grasp the scope of the disease. And the longer you suffer,
sometimes the less help you receive.
Family members and friends can help patients, not just with
chores around the house or by driving them to the doctor’s
office. They can and should be encouraged to attend the medical
appointments and ask their own questions. Spouses and parents
should be aware of the medications and the side effects. Most
RSD patients suffer from short-tem memory loss and may not
always realize that something is wrong because of their medications.
On several occasions, I have advised my husband and his doctors
that he has had reactions to his medications. For example,
in the beginning, we had a doctor who switched my husband’s
medicine frequently to find the prescription that worked.
But it wasn’t until one day in tears did I tell a friend that
I didn’t know who my husband was anymore that I realized he
was going through withdrawal from the medication. Once I told
the physician, he said he wouldn’t use it anymore. I also
learned not to let anyone take him off medication “cold turkey.”
Living with RSDS, Inc., has many active family members who
offer insight into the pain of watching a loved one suffer
and talk about feelings of helplessness. Open dialogue between
both sides benefits everyone. People should not have to fight
their pain along.
Both our family members and the RSD patients feel the most
important aspect of the group is learning that they are not
alone in this pain. Whenever we have new members we take the
time for them to tell their stories, talk about their RSD
and their lives before and after their diagnosis. In addition,
several times a year, our meetings are open for all members
to update each other about their treatments and offer suggestions
on living. These meetings are important for the members to
share their experiences and feelings about who they were and
who they have become. It is equally enlightening to spouse
and children to talk and listen. It is not at all neither
serious nor adult whining. There is a lot of compassion, camaraderie
and humor used to distract from the seriousness of the pain
sometimes the best medicine is just being able to talk with
people who understand your pain and what you are going through.
Last year I read Still Me by
Christopher Reeve. While I am a Superman fan, I read it more
in hopes of understanding my husband and his new disability,
even through his RSD wasn’t as tragic as a spinal cord injury.
The following sentiment from Christopher
Reeve helped me to better understand my husband and other
people whose lives changed in a moment. “People have
asked me what it’s like to have sustained a spinal cored injury
and be confined to a wheelchair. Apart from the medical conditions,
I would have to say the works part of it is leaving the physical
world—having to make the transition from participant to observer
long before I would have expected. I think most of us are
prepared to give up cherished physical activities gradually
as we age. The difference is that I would have had time to
prepare for other ways of enjoying the things I love to do
the most. But to have to have it all change and have most
of it taken away at age 42 is devastating. As much as I remind
myself that being is more important than doing, that the quality
of relationships is the key to happiness, I am actually putting
on a brave face. I do believe these things are true, but I
miss freedom, spontaneity, action, and adventure more than
I can say.
Accepting that loss of freedom doesn’t
happen overnight. To assist in modifying the daily tasks,
our support group invites a variety of doctors and other medical
professionals as well as holistic specialists to come and
speak to our members and their families. The one thing we
have learned is that what works for one person may not work
for the next. In our meetings we remind members that even
if the treatment reduces the pain for a few hours or days,
we all learned from the experience. As different as we all
are, our group strives to help each and everyone living with
RSD get the most out of life.
I would like to offer one closing thought.
I am sure many of you would agree that RSD changed your life
before you knew what was happening. Now you must learn how
to live with the pain, endure the doctor visits, put on a
brave face for loved ones, and still try to be the person
you were before. Whether you were an active sportsman, had
a successful career, or were an affectionate and playful parent,
times changed and so did you. Your opinion of yourself and
your world changed as well.
His accident, treatments and present
lifestyle caused Christopher Reeve to rethink his definition
of a hero. He once thought a hero was “someone who commits
a courageous action without considering the consequences.
Now he tells people he thinks a hero is an ordinary individual
who finds the strength to persevere and endure in spite of
overwhelming obstacles. I agree. Each of you fits his current
description. You are heroes to your loved ones, to your friends,
and to other RSD sufferers worldwide.
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