Our community has been quite excited to share our #TakeABite4GP campaign over the last few months. It has attracted an overwhelming amount of attention and has, indeed, lifted our spirits. So, it was with some surprise that while viewing a new #TakeABite4GP “recap” video this morning, complete with pictures of the many who participated, I found myself feeling not just delight, but sorrow as well. My heart rejoices that others are able to enjoy so much of what life has to offer, and I am grateful to all those who joined this campaign and for their efforts to help us spread awareness of this devastating illness we call Gastroparesis; yet, watching the images pass before me, I could not help but be struck by how much we in the GP community have lost and how badly we wish to live “normal” lives once again. It is tough. It is tougher than we can sometimes convey.
The bloating, nausea, vomiting, and pain that accompany GP are heavy burdens to bear, but for me, it is far more difficult still to confront the daily challenge of NEVER being able to “take a bite.” I am thankful for the liquids and occasional soft foods that keep me alive, but, well, quite frankly, I miss “real” food. As I sip my Ensure, I long to once again open my refrigerator and pantry and consume any one of the tantalizing morsels that strike my fancy. I am tired of having to muster up the will-power to distract myself from hunger pangs and yearn to eat whenever I am hungry. Most of all, I wish I could enjoy a meal with my family – just a normal meal, nothing more elaborate. I want to one day go out to a restaurant and order something other than a drink. I desire to sample the appetizers and mouth-watering desserts ever-present at parties and holiday events. I would like to prepare and savor a Thanksgiving feast again. I want to eat. I simply want to eat.
I was reminded, in a weighty conversation this morning, that when my mother was near death, on a ventilator but still able to engage in non-verbal communication, I spoke to her, “Mom, I wish I could just have one more Thanksgiving at your house, the way it used to be. I miss that.” The holiday gatherings at her house represented, for me, happy times, with the family all together, enjoying good company and a sumptuous meal. Food and social events are so deeply connected. I knew then I would never see another Thanksgiving at my mother’s home, just as I know now there will simply never be any sort of Thanksgiving feast for me – ever again.
This is not easy to face. So much of our lives center around food. Can you imagine observing all the food that appears on television, on billboards, in social media feeds, and in various public arenas and not being able to consume even a few bites of it? Do you know what it is like watching everyone else seated at the table, enjoying beautifully crafted homemade meals lush with every food you dream about every single day while you sit to the side, unable to taste it? It is painful – physically and emotionally.
If I had known that I was going to lose my ability to eat, if I had been granted any bit of forewarning, I believe I might have taken the time to appreciate the whole affair a little more than I did. We tend to take things for granted until they are no more. I believe I would have worried less about my weight and less about what others thought. If I could go back, I would have had that extra piece of piping-hot bread, and I would not have left that last bite of cherry pie on my plate just to prove that I had exercised some self-control. I would have made a greater attempt to join family get-togethers and parties, picnics, church dinners, and food festivals. I would give almost anything to have one day where I could live like I wish I had when I had the choice.
I am starving, and it is agonizing. I do what I must do to get through the long, torturous days. I am careful to avoid all temptations. I follow my given diet, take my medications, exercise regularly, distract myself, work to help others, and pray – but this is no easy journey. Mostly, I manage to maintain a positive attitude and hold out hope that there will one day be a cure, or at least an effective treatment. I ceaselessly remind myself of all the many blessings I have been given – friends, family, and the comforts of home. But in the end, I still want to eat. Have I mentioned that? I want to eat.
So, when you are sitting down to your next meal, visiting the newest restaurant, indulging in a bit of birthday cake, or enjoying the many sure-to-come holiday treats, please think of us in the Gastroparesis community. We celebrate your health and good fortune, and we desire that they should be with you always. We are likewise grateful for even the smallest measures you take to assist us in spreading awareness. But please do not forget us. Have mercy and compassion. Understand and acknowledge our plight. Help us get back the lives we so desperately miss. And by all means – #TakeABite4GP.