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July 31st, 2008 -
First, I would like to extend congratulations to the staff and volunteers
of the American Syringomyelia Alliance Project and Dr. John Heiss of the NIH
for organizing a terrific conference. I was able to attend last Friday
and Saturday and had the privilege to hear a number of excellent talks on
topics ranging from the Cognitive Effects of Chiari to Post-Traumatic Syrinx
Formation. And of course I was able to meet many wonderful people.
I encourage everyone to try to attend at least one ASAP conference, it is
definitely worth it.
In last month's Editorial, I reprinted a portion of my book, Conquer
Chiari: A Patient's Guide. Specifically, Step 1 in the 10 Steps
To Conquering Chiari. This month is Step 2: Prioritize &
Focus....
2.
Prioritize & Focus
Once you have moved past the anger and accepted
the situation for what it is, it is much easier to take positive, productive
steps to building a good quality of life. One of the most important early
steps you can take is to prioritize what is important in your life. If you
have real limitations, whether they involve pain, mobility, or something
else, they will have an impact on your life. The key is to manage their
impact, and maximize your capabilities and resources. In order to do this,
you need to decide what is important in life and focus on that.
Depending on your individual situation, this could
range from making minor modifications in your daily routine, such as lying
down for 20 minutes in the afternoon to rest your neck and back, to making
major lifestyle changes involving career and family. To accomplish this
takes introspection and the ability to take a realistic view of where you
are at in your life and what you hope to accomplish in the future.
Chiari strikes many people at a time in their life
where they are extremely active and involved in building careers, starting
families, and other activities. It can be difficult for someone who is used
to being able to accomplish many things to really slow down, take a look at
their life, and decide what is important. But the payoff is worth it.
Focusing on fewer things and being able to do them well will lead to a
better quality of life than falling short by trying to do too much.
At least that was the case with me. Four years after my
surgery, I still didn’t feel very good. My neck was so weak it seemed like I
couldn’t do anything without flaring it up. I wasn’t able to be the father I
wanted to be for my children and going to my job every day was an exercise
in pain and frustration. It was a struggle just to get through each day and
about an hour after waking up in the morning, I would look forward to the
end of the day when I could collapse on the couch. My surgery was
technically a success, but my quality of life was not very good.
I realized I needed to make a change. I was surviving,
but that wasn’t enough. I thought about what was important to me and quickly
realized I needed to put my family first. I wanted to have the energy to be
with my kids in a positive way, to play outside and go to fun places. Also,
I was tired of wasting time and energy in the job I was in. Boring meetings
which used to be a minor irritation had become intolerable. My time and
energy were precious and I didn’t want to waste any of it. Finally, I
realized that I needed to put a lot more effort into getting stronger and
recovering. I needed to work as hard on recovering as anything else in order
to do the things I wanted to do.
Needless to say, I left my job and career and started
what would become Conquer Chiari, working out of my home. Over the next
couple of years my strength, health, and quality of life steadily improved.
Being able to rest when I needed to and control my environment was a big
factor. Also, by eliminating the wasted time each day which comes with
working for a company (especially a big one) I was able to be more
productive work wise and still have time to focus on my family and perhaps
most importantly rehabbing. As I gradually increased my level of exercise, I
was able to do more and more, not only in the gym, but in life. I was able
to build the kind of life I wanted, while being aware of – but not
completely giving into – my physical limitations. And needless to say,
Conquer Chiari is by far the most rewarding work I have ever done. Today,
I’m able to do things physically that I once thought would not be possible,
and I’m still getting stronger.
Everyone’s situation is unique, and the point is not
the specifics of what worked for me, but rather to recognize that if you do
have limitations due to Chiari, a change in lifestyle, from modest to
drastic, can make a big difference.
Often, it’s all too easy to say, “Oh, well, this is the
way it is,” and just try to get through each day. But if you take the time
to take stock of your resources, reflect on what is important, and be
creative, good things can happen.
I realize that economic factors are an overriding
concern for most people, but there are many ways to make money and for
people with disabilities to be productive. With modern communications
technology, this is more true today than it ever has been before. Millions
of people across the country work out of their homes, and that is an option
I would encourage any Chiari patient to explore. Today’s work environment is
primed for people to work at home, work varied hours, and be independent.
What is important to you? Just because some dreams may
no longer be possible, doesn’t mean you can’t have new dreams, hopes and
aspirations. It just takes the mental effort and discipline to decide what
to focus on, and the creativity and willpower to make it happen. It may
involve sacrifice. It will definitely involve hard work, but nothing good is
easy and with some focus and effort you can find a new path.
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