Nothing is Lost Forever
"Nothing is lost forever. In this world there's a kind of painful progress, longing for what we've left behind, and dreaming ahead." --Tony Kushner, "Angels in America"
I just came across this quote from playwright (and screenwriter) Tony Kushner, from his 1993 Pulitzer Prize and Tony Award-winning play, "Angels in America." It resonates with me on many different levels, probably because the entwined trio of loss, grief, and hope are always important and recurring themes in my life.
Losing a large part of myself to RA and chronic illness at age 18 intensified these feelings and they have remained a complicated and permanent fixture, most likely inhabiting my body and soul for the rest of my life. Loss, longing, and grief are unavoidable side effects of RA, but I also firmly believe that hope can be another one--no matter how impossible it may seem to find or hold onto.
According to Merriam-Webster, "loss" is defined as follows:
1 : DESTRUCTION, RUIN
- to save the world from utter loss —John Milton
2 a : the act of losing possession : DEPRIVATION - loss of sight
b : the harm or privation resulting from loss or separation
c: an instance of losing - his death was a loss to all who knew him
3: a person or thing or an amount that is lost
4: failure to gain, win, obtain, or utilize
5 : decrease in amount, magnitude, or degree
6 : --at a loss
- uncertain as to how to proceed
- unable to produce what is needed
— for a loss: into a state of distress
That's a lot of loss, I know. For some reason, another definition of "loss," and a very important one, wasn't part of this online list: "the state or feeling of grief when deprived of someone or something of value" (via Google).
The definition of 'Living with RA'
Several of these definitions can describe what it's like to live (and lose) with RA. When I was first diagnosed, I remember being struck by an overwhelming sense of loss. Loss of being able to do the things I enjoyed and loved: playing the piano, drawing, painting, playing sports (softball, basketball, tennis), traveling. Feelings of loss and grief about "losing" the person I once was--healthy, active, youthful--were heavy emotional burdens to bear as I struggled to get a grasp on having this debilitating illness.
During those early years with RA, I was also at a loss, and definitely uncertain how to proceed in life and feeling "unable to produce what is needed." Today, 21 years later, I still often feel at a loss with both of these things. What am I supposed to be doing with my life? How do I move forward when constantly dragged down by pain and illness? What should I do? Everything is a guessing game. Along with that uncertainty and invariably a loss of self-confidence and self-esteem, feelings of guilt and shame overtake me due to not being able to "produce what is needed." RA not only makes you lose your ability to function physically (and emotionally/mentally), but it steals your motivation, energy, productivity, and inspiration. You lose your body and if you're not careful, your spirit.
But before I get way too depressing here, droning on about all of the things we lose because of RA, there is a little silver lining in the stormy clouds of our disease: hope. We often lose it, feeling helpless against the cruel invisible monster destroying our bodies, never knowing when or if the pain and destruction will let up. But we don't have to lose it forever.
I lose hope all the time, over and over again, overwhelmed by the never-ending cycle of pain and illness. Yet I also try hard to find ways to get it back, and surprisingly (magically?), it does return. Why, I don't know for sure. Maybe it's the strength and resilience I've been forced to develop over the years. Or, maybe I'm just fiercely determined to not let RA take anything more from me.
When was your last flare?