Inside the Miracle
Last weekend, a user on MyRACentral named Laurie posted about the change in her life brought about by Humira. Less than a year ago, two
separate doctors told her that she'd never be strong enough to do the physical
things she loved, would never kayak or hike again. So she sold her kayak and I
can only imagine the grief that followed. Actually, I can imagine the grief, because I've been there, too. A different
expression of losing what was an essential part of you, but I suspect the same feeling.
It's a devastating sadness, this necessity of redefining who you are, of giving
up something so much part of you that you may as well amputate a limb. The
phantom pain echoes as you move forward, becomes scar tissue, a
reminder of what you no longer have.
But this is not about sadness, this is about joy. Because in
that post, Laurie tells of confounding the soothsaying of the doctors and after
five months on Humira getting back into a kayak. And every time I hear a story
such as Laurie's, the miracle of the meds that are now available hits me again.
It is never far away, this awareness of how revolutionary the change in
treatment has become - we are at a place I thought I’d never see in my lifetime
and every year, more changes happen. More drugs, more tests, more changes to
the approach to treatment and because of it, the goal is now remission. Actual
remission. It boggles the mind.
And when I hear a story such as Laurie's, it reminds me of
the change in my own life. Because as I said in my comment on her post, after
seven years on Biologics, I am still getting stronger. Enbrel took me the first
bit of the way, gave me back my life. And then Humira jumped in and created its
own miracle, changing my life every year, sometimes every month. Because I am
still getting stronger, am still regaining parts of my life I thought I'd lost forever.
Because of Humira, I am allowed to take care instead of
being cared for. Because of Humira, my belief that I would never have the
strength and energy for everything that is part of a romantic relationship
again was proven wrong. Because of Humira I have a job and an almost-finished
manuscript with my name on it. It is as big as that and it is as small as the
ability to buy my own groceries, to go down to Sugar Beach, to play Angry Birds and to
complain about being too busy.
And it is more than that, more than this embarrassment of
riches that has become my life. It is a gift that has changed how I view life
and how I fit within it. This gift has made me a deeply happy person even
during the times where I am bashing my head up against limits. It has given me
the gift of believing - really, truly believing - that it all will not be taken
away tomorrow.
And there is more, something that is difficult to wrap my
head around. Because Humira has given me back possibility. In helping me get
stronger and helping me regain what I thought I had lost, my expectations about
where my limits are, where the line is between what I can and cannot do keeps
changing. Keeps growing, keeps moving further than I ever thought possible
again, keeps proving me wrong in my assumptions about what is possible. And it
means that now, when I speak of things I cannot do, there is a small voice
inside my head that says for now.
That says you never know.
I live within a miracle every day. And it comes with a joy
and awe so profound there are no words to describe it.
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