Having AS has created a time of my life in which I am experiencing more self-discovery, emotion, and growth than I have at possibly any other time in my life. I find myself thinking about the world and how it affects me in a completely different way these days. And my emotions seem to be all over the place! I have been trying so hard to be positive, take it one day at a time, and fight the fight… but sometimes it is overwhelming to think how I will be doing this the rest of my life… fighting for the rest of my life.
I try to remind myself that “worrying doesn’t stop the bad
stuff from happening; it just stops you from enjoying the good.” I can’t change that I have AS, and I can’t
control that it will be with me for the rest of my life. I still find it
challenging to come to terms with the idea that this is not a phase I am going
through… I want to believe that if I work hard and try the diets, the medicine,
the doctors, the yoga, the research… that I will get through it and go back to “normal.”
Is there such a thing anyways? What is normal? We all have our own battles,
complications, and trials. This one is mine. This is my dark cloud, my
thunderstorm, my challenge. I have AS, but the real challenge is in making sure
that it does not have me.
I want to be remembered as a positive person, a game
changer, a love spreader… I want to be inspiration for others… I want AS to
make me a better person, not a person that neither I nor anyone else should
feel sorry for. This is my moment, and AS will not define me, but how I handle
it will.
So, I have to look at the world differently… Can my food
change the course of my disease? Will yoga save my mobility and help me bring
awareness to my body? Does the course of this disease change what I want in my
life and what my priorities are? Are the drugs out there worth the risk? Are
they worth the side effects on my own body? Are they worth what that might mean
for future family planning? What is the cause of my exhaustion, and is it
physical or mental exhaustion that I feel most days? What does it mean to be strong?
I heard a quote in a movie I watched this weekend: “you don’t
choose your life, you live your life.” I did not choose this disease; who
would? But it is a part of my life. How I live with this disease is up to me.
The biggest battle is to not let the diagnosis, the hard days, or the
challenges ahead get the best of me. The challenge is to truly live with the
disease, rather than wallow in it. I must find ways to remain positive and
focused on the day in front of me. There is no need to let multiple days gang
up on me when I have yet to face them, and when I have yet to see what they
have to offer.
Life is an unpredictable journey. Sometimes it provides you
with beauty, and sometimes tragedy, but you control the course of your own
journey from that in which you encounter. Take the beauty, take the tragedy, and
make it your lesson and compass for the rest of your journey. AS is my
opportunity. It is my growing point… Having this disease is so hard. I wish I
could describe the pain that I feel, the ache in my little, 24 year old body… It
is emotionally trying and daunting. It’s completely unfair. Most days I feel
that I was robbed of something. Robbed of my youth and being carefree… Robbed
from eating what I want, doing what I want, and having all the time in the
world to make major decisions for my family, well-being, and career. But this
feeling of AS robbing me of my life and opportunity will do nothing but create
a course set for disaster. I will only let this one thing define me for the
rest of my life… and I don’t want to live like that.
That is why AS is my opportunity. It is the opportunity to
change the course of my life forever, and for the better. I have to remain
positive so that this will not define me, but rather invigorate me. I will know
my body better and take better care of it. I will bring awareness to this
disease, so that others might find early diagnosis and intervention. I will eat
better and make it a priority in my life, which will help more than just the AS.
I will create strong personal boundaries and remember that I am the most
important thing I can invest in. I will put my family first and take the major
decisions one step a type. I will process through my thoughts in this blog and
hopefully inspire others to be positive, no matter what their challenge may be.
I will have a better understanding on how important it is to be grateful for
the simple joys in being active and moving. I will have more mobility and self-awareness
than I did even before I was diagnosed thanks to my yoga practice. I will be
better in doing what’s best for me. I will find more ways to be happy and grow
from the tough times.
It’s all easier said than done, but I have a plan. It’s my
challenge… to be positive even in the darkest of times. If it wasn’t this, it
would be something else. I challenge you to live the same way. We all have
pain, heartache, challenges, and downfalls. Use them as your opportunity to
grow and to better yourself. At the end of the day, you are the most important
thing you have. Take care of you, nurture you, and remind yourself… it’s going
to be okay, but only if you believe so.
Fighting the battle, one day at a time…
Amanda
