By Katie O’Leary.
I used to be the type of person who would tackle a problem head-on, with the kind of strength and perseverance that demonstrated my desire to survive no matter what. I knew what needed to be done, and I would neither hesitate nor deliberate on my decisions.
But so much has changed.
I wake up in the mornings, terrified out of my mind. Wondering if I can live my life the way I used to. Wondering if I can rebuild my life, drive my car, be a contributing member of society, be something other than SICKLY.
I have to force myself to eat something as I dress and brush my hair. I try to find that routine. I try to step outside my comfort zone. I sit on my bed, dressed and shaking as I tell myself over and over – “You can do this. You can go out there and do this. You can walk. You can be there. You can start again.”
The fear that grips my heart is overwhelming. The pain in my leg is ever present and pulsating, like a second heart, beating constantly in my flesh – reminding me every second what I have to lose if I have a flare or if I slip up. What if I can’t return to the world? Pain has defined my life for over 3 years now. I have lived by it, suffered by it, and nearly died by it. It has warped my mind, spirit, and emotions into believing that I cannot do anything. I am no longer capable of achieving the goals or even small tasks I used to be able to do. Pain can convince you of the most incredible lies.
I want to live beyond my physical pain. I want to walk in a crowded square and not feel my entire body tense as I see hordes of people, terrified that they will bump my leg. I want to go to a busy café and not hold my arm horizontally away from me to divert passerby from hitting my hip.
But I don’t know how. How do you rebuild your life when your disease has no guidebook or no end in sight? When those around you have no answers or medical advice beyond a shrug or, “Well we don’t know when you’ll get better but maybe soon?”
That’s the problem with surviving – you forget how to live.
And so I wake up every morning and I force myself to get up and follow a new routine. I get up outside my comfort zone. I’m terrified. I’m scared out of my mind. Every day. I do not know if I can keep it up for a long time or forever. But I have to try. I have to take a walk out that door. I tell myself, “You can always walk back in, regroup, and try again”. For now, all I can do is be thankful I have a door. I have a door, and I have arms to welcome me back if I need them.
And for now that is enough.