It is physical agony beyond compare. It is days and nights spent on the bathroom floor, crying, pleading for someone to make the crippling pain, nausea, and vomiting stop. It is being too exhausted to focus, too drained to complete chores, and too weak to climb up the stairs to your bedroom. It is hungering for food, relief, a moment’s peace. It is praying for an end to the never-ceasing torment while knowing in your heart you will face it again tomorrow.
It is frustration and anger. It is watching others eat, work, and play, and wondering why they were blessed with such normalcy while you are fated to be ill. It is seeking independence but knowing you must now rely on others to perform basic tasks. It is seeking consistency but realizing you are subject to the whims of this cruel disease and your symptoms can worsen in an instant, destroying the best-laid plans. It is pushing yourself to the point of collapse and going without eating some days, though you know you should not, just to show this disease who is in control. It is being endlessly asked if you are okay, listening patiently to well-meaning yet misguided souls offer “remedies” and unsolicited advice, kindly overlooking their pronouncements that you “just need to eat,” explaining the nature of “chronic” illness time and time again, and ceaselessly trying to convince those around you that you might never be “okay” again, not in the sense they imagine. It is doing everything you are supposed to do – following the diet, exercising, resting, taking your medications, keeping your medical appointments – but still receiving no healing.
It is multiple levels of worry and fear. It is checking the menu in advance and wondering how it will look when you only order a drink. It is searching for a bathroom as soon as you enter the building. It is carrying emesis bags and a change of clothes in case of accidents. It is reading the room to know how embarrassed you will be should such an incident occur. It is checking your watch because after an hour or two you might not be well enough to drive yourself home. It is worsening symptoms, comorbidities, and flares that grow longer and are more frequent. It is scary-low blood pressure, poor lab markers, shaky footsteps, and mental confusion. It is 500-calorie days, liquid diets, tube feedings, and TPN. It is ER trips and hospital stays that leave you wondering how long you can survive this. It is not knowing the cause and believing that doctors will never find it. It is watching your GP friends struggle and sometimes die – and pondering whether you will be the next green candle on someone’s wall.
It is disappointment and lowered expectations. It is trying a food again and again, hoping against hope that this time you will be able to tolerate it, and then dealing with the pain of your mistake. It is going to doctor after doctor, trying treatment after treatment, eagerly anticipating relief, only to have your dreams dashed when it makes no difference. It is the look of dissatisfaction you see from your boss when you cannot complete an assignment, from your friends when you call to cancel, and from your family when you cannot do your fair share. It is being unable to meet the demands placed upon you by yourself and others, though you wish with all your heart you could, as you once did. It is watching your world shrink before your eyes as you constantly try to readjust.
It is grief and loss.
It is knowing that despite your best efforts, you won’t make it to your
job tomorrow, that you will miss your daughter’s play later this week, that the
vacation you planned for next month will be put on hold, and that you will be
absent from the family Christmas gathering again this year because you are
unable to function. It is wishing your
friends would invite you over like they used to but knowing you have
disappointed them one too many times. It
is yearning to share a meal with your family, just a simple meal, but being
nauseated by the mere smell of food. It
is lying on the sofa on your anniversary instead of spending the evening out
and then wondering why your spouse does not look at you quite the way he used
to. It is gazing into your child’s
pleading eyes and for the millionth time saying, “I can’t.” It is the loss of your career, your social
life, your enjoyment of food, your spontaneity, your independence, your sense
of security, your dignity, and your peace.
It is desperately wanting your old life back, longing to have just one
more carefree, symptom-free, “normal” day like the ones you once took for
granted.
But Gastroparesis is more than this…
It is a teacher of compassion and empathy. It opens our eyes and our hearts to the struggling souls who surround us who need to be heard and understood. It demonstrates the depths of physical and emotional pain and makes us far more open and responsive to the similar needs of others. It admonishes us that there are failures in our approach that must be addressed, that all lives are valuable and all people are deserving of dignity, and that the chronically ill are not merely statistics but living, breathing beings who still have hopes, dreams, and goals. It develops in us sensitivity, understanding, and a sense of responsibility to those around us. And it creates in us a desire to make it all better, to serve, to educate, to guide, to dedicate ourselves to easing the pain of others; it reveals meaning and purpose in an otherwise seemingly random world.
It is a developer of appreciation. It reminds us that we are not promised
another day and that the people and things we once took for granted are
precious. We let go of grudges and
embrace our loved ones without restraint because we have learned there is no
“perfect time” to tell those who matter that they do. We embrace the small, beautiful moments
because they are so few now. We pause,
soak them in, feel them to the depths of our souls. We seize each second of joy
and fully grasp the significance of what we once thought mundane. It is the ordinary that is special,
priceless, and it is sometimes only when we have lost this that we understand.
#ThisIsGP
