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Defining
a "Meaningful Life" when one has Chronic Pain"Two
Roads diverged in a yellow wood.. And sorry I could not take them both.. I took
the one less traveled by.. And that has made all the difference!" Living
with chronic pain... Yup!! Whether I "chose" the road less traveled
by, or FELL into it after my car accident left me with chronic trigemminal pain
behind my left eye, it certainly has made ALL of the difference!! 1.
Perhaps that is one of the first big hurdles to accepting your new life. You
did NOT choose this "road." It was forced upon you. That infuriates
anyone, but since there really isn't anyone to blame, that rage often turns inward
and is transformed into hideous depression. A double whammy! And, as if that isn't
enough, the pain continues to deplete your brain chemistry of its necessary seratonin,
causing the brain to sputter into an even more severely depressed mode. So, just
when you need your mind to be able to jump above the pain and hope for the best,
your brain's "fuel" has been depleted of its "optimism" quota.
It cannot produce "happy" thoughts. The synapses are simply not able
to communicate with each other positively due to the chemical imbalance that now
exists! So the first big cognitive chore is to - and I'd even write this
down to read each morning - remind yourself that no matter how bad you may feel,
it is only logical. It is not "crazy" and, if possible, GET MAD NOT
SAD!! At least for a while. 2. As time goes on, if no medical procedures
offer any relief, big dreams that are only smothered with the horror of awakening
from anesthesia with the cold recognition of perhaps even more pain. And certainly
less hope, further draining the brain of its correct balance of chemicals. Depression
finds a home in our heart that is breaking. 3. BE ANGRY! That's
normal. Don't be a stoic. Cry if you feel sad. Silent tears are only for Barbie
and she has a plastic heart - you don't. 4. Acceptance! Oh, what
a hurdle. I am embarrassed to tell you that it took me three decades of doggedly
pursuing surgeries, refusing that there was no cure, before I finally accepted
my pain as "what is for now." I don't know how to make that step any
easier. In my case, I just became worn out. I couldn't bear one more hospital,
one more doctor, one more disappointment. And I guess I had finally realized that
there was no magic cure. So, I finally gave up hoping that some doctor
was going to "cure me." I stopped pretending that I was going to be
OK. I stopped smiling. I collapsed. By that time I had become so nervous and agitated
that I could no longer force my mind to block out the pain signals howling in
my ears long enough to hold conversations with people. I'd try to focus, but my
mind finally just quit! I began to stutter, shake, make no sense. So I withdrew
into my bedroom, hoping to find the "courage" to die. Bordering
on mute, no longer a part of my own family, no longer more than a cartoon character
in my own eyes - a useless, pathetic travesty - I was filled with self-contempt,
self-loathing, and I crashed to the bottom of the well. I no longer answered any
phones and no one called anymore anyway. My thoughts were so ugly, so perverse.
My insomnia was so chronic that I couldn't ever get away from them. 5.
But, when I stopped even hoping to find that miraculous medicine man who would
take over and heal me, I began to ponder what I could do. So
I wrote up this list... 1. NO ONE cares about me like
I do. I am going to change doctors until I find one I can communicate with. 2.
I read the ACPA
list of rights and I scotch-taped it onto my mirror. It says I have the right
to be treated respectfully and to ask for good medical care. I might make mistakes,
but at least I'd be the one calling the shots!! Hmm - pretty heady stuff for a
dependent, lowlife, spineless chronic patient!
3. Knowledge
is POWER!! So since no doctor could feel how I felt and none were as interested
in curing me as I was, I began, timidly at first, to research my own condition.
I flew through websites, emailed doctors and posted messages on bulletin boards.
I entered chats. I called pharmacists. I got INVOLVED. That was the beginning
of my renaissance! Not only was I beginning to feel more independent about my
life, but as it was a subject that was dearer to my heart than any other, studying
about it often allowed me to overlook the pain for hours! 4. I found
a psychologist who was willing to do our first sessions by phone. I had become
so agoraphobic that I couldn't make it to her office. But after many therapists
turning me down, I found her. (There is a wonderful therapist online at www.mhsanctuary.com,
Patty Pheil whom you can also have therapy with via the phone if you so choose.
And I am sure there are many others too.) The key here is to PERSEVERE. Never
imagine that it CANNOT be done. Call enough numbers, contact doctor referral sites
on websites, crisis lines... Look under Pain Management sections in your phone
book..etc. Do not give up!! Write or email the ACPA!
Log onto the links they provide on their website. 5. I discovered
through talking to her and to fellow pain patients I met online that it was NATURAL
to feel nervous, panic, and "brain dead" when pain is constantly disturbing
your limbic system in its effort to make you attend to it. When the pain never
stops, it is natural that the crippled nervous system begins to break down. That's
also not mental illness. It is natural. 6. The more I reached out,
researched, and learned, the more POWERFUL I felt. And the less fear I experienced
as I understood what was going on. 7. Luckily, I managed to find
a psychiatrist who was not afraid to prescribe pain killers on an ongoing basis.
That is such a sore issue in this country. I have my own opinions, but it is an
individual thing. People often say when someone dies "Well, at least he didn't
suffer." Death often appears to be preferable to long term pain. 8.
Do your research!! There are many non-addictive pain killers now available. Talk
openly with your doctor about them. I am very aware of the potential of addiction.
But if you are resourceful and use your mind, that too is easily manageable. Why
not ask your doctor to prescribe in two week increments? Then if you do take more
than you should one night, you simply are SOL until the two weeks are up and you
can pick up your next prescription. And if you are concerned about abuse, ask
him/her not to write for any refills. That way you truly cannot get into trouble!
In the meantime you may find several hours a day where you are in control of your
life and the relief and joy of experiencing some mastery over your own body will
be well worth it!! Remember, there is no blueprint for how to live with
chronic pain that often becomes acute. It is a hit or miss art still. You are
the artist of YOUR tapestry, not the physician. Don't imagine he/she is somehow
more in tune with your pain than YOU are. Don't put doctors on pedestals. They
can fall off just as easily as you can. And meanwhile it is YOUR life. I respect
and value doctors. But I don't assign magical attributes to them. Nor do I think
they want me to. I find that they treat me with respect if I insist on being treated
with respect. Be they doctor, lawyer, or Indian chief, anyone who treats me dismissively
doesn't belong in my solar system. Nor I in theirs. Life is too short! My health
is too important to me to waste time with someone I cannot communicate directly
with. I am belaboring this only because as a "chronic" patient,
it is so very easy to become so dependent,clingy, and needy of ANYONE: we will
stay with a doctor who isn't helping just because we are feeling so insecure and
want SOMEONE, ANYONE, to love and approve of us. If you need that, buy a dog!!
But find a physician who fosters health, independence, respect and believes in
YOU. 8. Once I got on the proper meds and as my commitment to stay
involved with my own health care grew, I started to become a tremendous advocate
for patients rights. And this has given me something to FOCUS on, something to
be PASSIONATE about. In short, something to think about beyond the pain. FINALLY,
pain does not define me. It does not control my every minute. I have an illness.
It may often encumber my life. When it does, I get mad if I want to. I cry if
I feel like it and then I can honestly say I have learned to accept it. It
has made me a more compassionate human being. And it has forced me to slow down
and see the divinity and sweetness in little things. I am not in such a rush anymore.
I no longer see my life as something to be "graded" by accomplishments.
There is so very little I can accomplish anymore. So now my challenge is to fan
the fires of self-love just because I am me. I am leaning, slowly, that the value
of my life is not what I can DO or ACCOMPLISH, but in how intensely I can use
this experience by transforming its tears of pain into the ache of love!!
9. Find something you love to do and do it. 10. Find
those you love with every fiber in you and practice really loving them NOW! 11.
And, mostly, practice loving YOURSELF. Your life has been a very, very rough one.
Mother yourself. Nurture yourself. Remember that God knows how incredibly difficult
every moment is for you. That's all you need.! 12. As you start
to feel better, build your support system back up. It doesn't need to be huge.
But you do need it. 13. Find a way to help others . It is such a
relief to focus OFF yourself. And if you are housebound, there are myriad of virtual
volunteer opportunities.
Do a google search for
volunteer opportunities online. Laugh!! Practice gratitude for what you do have!
Even when you don't feel grateful at all, it seems to make you feel more mellow
- honest! And, one more time, if you feel "stuck" and medically mismanaged,
make appointments for second, third, even fourth opinions if you must. It is tiresome.
But, again, you alone are responsible for making this work. And you can. Just
be relentless when it comes to finding the best individual pain management for
YOU. The "road less traveled" may turn out to be the luckiest
thing that ever happened to you!!
A true experience by Debbie Cole
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"If
I didn't define myself for myself, I would be crunched into other people's fantasies
for me and eaten alive."
- Audre Lorde
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