"Acceptance of one's life has nothing to do with
resignation; it does not mean running away from the struggle. On the contrary,
it means accepting it as it comes, with all the handicaps of heredity, of
suffering, of psychological complexes and injustices." -Paul Tournier
Lately, I have been thinking about acceptance and what that
really means. Over the course of my short 24 years (25 next month : P) on this
earth, I have had various troubles with acceptance. Accepting my parents’ divorce
was the first real challenge of acceptance that I remember encountering in my
life. It is hard to know the balance of working through an issue, and avoiding
it. Sometimes, I think my form of acceptance has been learning to live without
thinking about that something... as if it does not affect me. But, I am not
really sure that is "acceptance" at all.
A.S. is my reality, but I think most days I find myself
crawling into the hole of "maybe this isn't really happening to me."
I talk about it, I blog about it, I think about it... but many days I try to
pretend I am not LIVING with it. Sometimes, I think my stiffness and pain…
Well, just maybe that is from a new work out. And maybe the starch won't hurt
me since there isn't any "real" research to support the diet aiding
in the disease... I find myself thinking about why this could have happened to
me. What I did to trigger the disease in myself, as if I ever had control over
it. I think about how to avoid it as a lifestyle, rather than accept it.
My NSAID has made such a difference in the sharp, unbearable
pain I was having. That pain took over my whole body. I would take a step...
and it was if a snake of sharp jagged knifes ripped through my heel, tore past
my knee, left my thigh completely numb, and coiled deep into my SI joint until
it triggered every nerve into full agony. From there it made a straight shot
into my skull leaving me physically and mentally useless in helping myself. My
NSAID has made me comfortable, which I am extremely grateful for, but I worry
about being too comfortable. I am worried that being too comfortable will keep
me from accepting the long journey and battle ahead. I am worried I will forget
that pain. I am worried that I will not be dedicated to my other life changes,
and when my next flare comes… I will break down. I fear the break down because
I am not sure I am emotionally prepared for it at this point. I have this small
voice telling maybe it won't ever happen again. I am not sure I am not ready
for a time when a drug does not solve the worst of my symptoms.
I know that it is all about taking it one day at a time, but
I don't ever want to leave many days at rest, not preparing for the next war.
This is a disease where I think avoiding its reality may be the worst course I
could take. I think I need to be extremely proactive to save my body, it just
can get exhausting when every day seems like preemptive battle. But honestly, I
just don't know what I am doing... and that in itself is terrifying. I am
pulling at strings as to what might help me, what might save my back. I love my
back, you know? It's not really something you think about until you think about
your spine not being a part of you... not moving with you. I love that I can
bend, twist, jump, curl, twirl, somersault, back bend, halasana (plow pose),
arch, flip... not only do I, as a person, love to move... but I have such an
appreciation for how my spine moves me and moves with me.
My exhaustion is growing. But, how much I sleep is not...
Falling asleep and waking up are the worst... I think this stealing the motivation
I have left and letting me fall of being “comfortable” with the NSAID... I
don't want that. My goal is to be off of the NSAID at the end of the year,
and... I don't want to take anything else. At least not for now... It’s naive
to think that modern medicine isn't a helpful and an essential tool in this
disease, but it’s just as naive to believe that you can't make changes in your
daily life to help control the symptoms. But, it is hard. It is the hardest
part of all of this. You live your life a certain way, for your whole life, and
then you find out that this new part of your identity is going to help dictate
the way you live the rest of it. Some days I tell myself "Que sera,
sera." Other days, I just cry... and those days almost always take me by
surprise.
I think a huge part of acceptance, for me, is the emotional
component of it. How do I feel about it? Why do I feel that way? How do I work
through that? How do I feed the emotional needs of this disease to keep me
motivated and happy? Lately, I feel that I have been thinking about what I HAVE
to do. What in my life I have to get in order before I go on drugs that scare
me. What I shouldn't be eating. What I may not be able to do. What vitamins I
should I take.... everything is a chore! Of course I am exhausted. Of course I
am losing motivation. This is not the way to think about the challenge I have
ahead of me, nor the one I am facing today. I need to accept my life and think
about ways to better it. What can I do to better my situation, not what I have
to do to "deal" with my situation?
I want to accept the identity of being an A.S. patient and
make something of it. I will be a better person because of this, I can already
feel it. I am now meeting some other physical needs that my body has needed for
years. I have a new awareness and now, I need to accept that. And integrate it
so that it is not a chore, but simply a way of life... like I don't know any
different, therefore I embrace it. I may not get there today, and maybe I will
not be there every day... but I am identifying the problems with the way I am
thinking about my A.S. today. I think that will be one of my strongest tools in
the battles ahead.
I need to accept my body for what it is, and challenge
myself to see it as a gift. I have been blessed, not cursed. I will cherish and
take care of myself that much more now... I need that. Use today to see what
you can accept and grow from in your own life. You are bound to surprise
yourself...
Hugs,
Amanda
