The older I get, the more suffering and pain
I’ve experienced; and the more of both I stand witness to. From my wife’s (and
many, many of our friends and coworkers) battle against breast cancer; to my
dad’s (and the parents of many of our friends and coworkers) process as he
fades away as this complex disease breaks the connections between more and more
memories, I have become not only frustrated with suffering, pain, and having to
watch both, I have been witness to the suffering and pain among the students I serve
as a school counselor. I have become angry and sometimes paralyzed. This is my
attempt to lift myself from the occasional stifling grief that darkens my days…
I was looking for encouragement for people who suffer lymphedema; in
particular those who suffer from the condition because of lymph node removal
due to cancer; specifically breast cancer.
I can’t find anything…
Is that surprising? I don’t know. Lymphedema doesn’t have a “wow!”
factor, I think that might be the problem.
Everybody cringes when they have to talk about cancer. Its many different
colors and the fact that it can strike anyone, anywhere, whether multi-millionaire
movie star to the poorest of the poor on Earth inspires countless responses
from terror to story. Virtually everyone has a “cancer” story, and when the
diagnosis comes, people flock to support and attempt to alleviate the suffering
of both victims and those close to them.
Lymphedema doesn’t inspire the same response at all. In fact,
lymphedema inspires such an insipid response, that until very recently, medicine
consigned the condition as “something you’re just gonna have to live with; here’s
a compression garment.”
That has changed. During recent sessions with a lymphedema specialist
(which are very few and very, very far between – because being a lymphedema specialist
wasn’t really a “real career”…), we received new hope that lymphedema IS
curable.
But even in recent history, a diagnosis of lymphedema was met with a
shrug: “…the history of lymphedema
treatment begins a mere three decades ago. Before the RECOGNITION that lymphedema
was a treatable condition, doctors just laughed at it, shrugged their shoulders
and said, ‘Oh, well.’
“That was mostly
because the doctors were males and the victims of secondary lymphedema caused
by node excision in the treatment of breast cancer was a ‘woman’s problem’. I
imagine it would have received a bit more attention from the medical community
if cancer node excision had caused the shrinkage
of another extremity near and dear to the heart of every man...
“At any rate, with
the founding of the National Lymphedema Network and their pioneering work in
the treatment of lymphedema, more and more doctors are recognizing that not
only is lymphedema treatable – it NEEDS to be treated rather than ignored.”
I’ve written on
the topic of lymphedema eleven times since starting this blog. I have found
virtually nothing regarding encouragement. The 2012 (in case you can’t do subtraction,
that’s seven YEARS ago) article linked below in Resources expresses this
response precisely: “Voices from the Shadows: Living with Lymphedema”.
Lymphedema is a
shadow disease, disregarded mostly and certainly not the subject of super-star
fundraisers! Kathy Bates, the actor now best known as being Amy Farah Fowler’s
mother on the recently concluded BIG BANG THEORY, is a lymphedema advocate. I’ve
linked to her recent appearance on WENDY, the Wendy Williams talk show where
she discusses her life, including her experience with lymphedema – https://www.youtube.com/watch?v=iWcZqQXBOOM.
In Voices from the
Shadows, participants were encouraged to “…write about your deepest thoughts
and feelings about how lymphedema and its treatment has affected you and your
life. Really let go and explore your deepest emotions and thoughts.” By the
same token: “…some positive feelings were also present. These positive feelings
centered around perceived support from other people and strength gained from
belief a higher power assisted them in coping with this chronic disease. Other
people and God appear to have a positive, fortifying, effect on breast cancer
survivors with lymphedema and partially fill the void they experience from
societal marginalization. The women in this study offered moving stories of the
encouragement of friends and family members, coupled with their acceptance and
willingness to help in any way.”
So, some
encouragement from the study:
“I have wonderful
friends and family. They take me as I am and are very concerned about what I
call my leftovers from cancer. I don’t think I could ask for better people in
my life.”
“My husband has
been very supportive with this. He wants to know about it as well, and so do my
friends and family. I share with others about lymphedema who are going through
Breast Cancer, and I hope that I will help others.”
“I am truly
blessed to be able to somewhat go on with my life and my family dealing with
what God has dealt me. He doesn’t waste your pain. There is life after cancer
with lymphedema”.
“I am living with
this condition everyday but not as an invalid but as a survivor. God spared my
life and lymphedema was part of the package. That’s OK when you consider the
alternative.”
We, as friends,
family, and even as a community of those that have been touched by lymphedema, can
play an important role in encouraging those who suffer from lymphedema…
I have learned
that I can do MORE to support my wife and here publicly promise to do more!
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