“The doors we open and close each day decide the lives we live.” – Flora Whittemore
Everything has changed. Everything. Yet it’s the smallest of these changes that tend to bother me the most, such as my once naturally beautiful nails that now crumble like carefully baked cookies, symbolizing the destruction of the life I once lived. Things that seem so inconsequential on the outside can tear you apart from the inside. It’s hard in the moments that feel as if you’ve lost the things you once loved and must force yourself to overcome hurdles you never asked for, just for a fleeting glimpse back, to stand in the kitchen for 15 minutes as the burning begins to forcefully set in and feel powerless to make what you once loved dearly enjoyable once more.
I often times find myself wishing. I wish my body had waited to manifest this disease until after I finished graduate school so that the hill did not seem so far to climb. I listen to the complaints of others and wish those were my major concerns. I wish my treatments – the physical therapy; the medications that blur my thoughts, steal my memory, and muddle my overall cognitive abilities; and the nerve blocks – were somehow more tolerable and…perhaps even sometimes easy. I wish evenings were more enjoyable, rather than exhausting and painful. I wish to avoid special treatment from others, yet find myself providing internal excuses for why I’m different than others – a hypocrite that I can no longer look in the eye. I wish for so many things, big and small, rational and irrational.
“Hope never abandons you; you abandon it.” – George Weinberg
But I seem to have lost my hoping in all of this wishing. Hope for tomorrow, hope for the milestones, hope for relief, and, most of all, hope for the future. I’ll admit some days are easier than others, and I’ve nearly mastered hiding the pain (physical, mental, emotional) from those around me, but I have yet to master the art of pure, blissful hope.
“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” – Dale Carnegie
I accept my world has permanently changed, both in ways I prayed would never be seen and in ways so beautiful verbal descriptions are elusive. I fully believe this is the first step towards finding hope – the same hope I have been chasing 14 months that wriggles away from my arms not long after its capture. Hope is here, somewhere deep inside. I can feel it, and it emerges with each accomplishment. Though each achievement is accompanied by another milestone full of its own setbacks.
This journey requires considerable courage and self-reflection. Sometimes this new awareness reveals alarming new character traits that I must work to amend. I am horrified when I find myself thinking I deserve something more than another simply because of what I must overcome, fully realizing the truth that others must bear could be just as painful, if not more, than my own. In these very moments I squash my chances for hope with my selfish wishes. It’s a tough self-truth that I have come to realize. Simultaneously, I have gained strength, grace, and the ability to be more objective. There are times in life that you must take several steps backwards in order to move forward.
You may ask yourself the events that spurred this post. The symptoms of my condition have recently magnified, and the sympathetic nerve block administered on Monday was not successful. Few treatment options remain, at least for the moment. Additionally, I have reached my final semester in graduate school. The weight of working full time and attempting to finish my graduate education sometimes feels more than I can bear.
But each accomplishment brings more hope – hope that I cannot allow to be suppressed by wish and anger. So today, to you, I vow to set aside my selfish wishes to allow more room for hope and the courage to change who I have become into who I want to be.
Hope has two beautiful daughters: their names are anger and courage. Anger that things are the way they are. Courage to make them the way they ought to be.” – Saint Augustine