In February 2014, I spent a week in the hospital and was diagnosed with gastroparesis, and since that day, my life has changed in ways I could not have imagined – overnight. One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness. For the next few weeks, I was on a liquids-only diet and told that I would gradually work my way up to soft foods and solids. Unfortunately, nothing like that has occurred. Today, I am able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts.
After first being diagnosed, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life. But with the passing of time, I see how foolish that was. Every single day, every second of every day, I think about food. I see it, smell it, cook it, and feed it to my family; but I cannot have it. I look in the mirror and I barely recognize the skeleton staring back at me. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I did not think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs. My 15-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. She has been so frightened at times that she has asked me to get “Life-Alert.”
I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions. I worry that I will not get to see all the significant milestones to come. I am not on the verge of death today (at least I do not think so), but when I look in the mirror, I realize that people like this do not have long life spans, and it bothers me. I worry about what will happen to my family when I am gone. I fear my daughter’s reaction to my death and the consequences that might result from her growing up without a mother. I want to be there for her when she is sick, scared, or needs advice. I want to see her turn “Sweet Sixteen.” I want to hear about her first kiss. I want to see her grow up, graduate, get married, and have children. I want to know that she has a good career and a loving family. I cannot bear thinking about the pain my death will cause my husband, and I am concerned that he might not be able to function when this occurs. I want to grow old with him. Facing the strong possibility that none of these things will occur is anguishing.
I get frustrated because people do not understand how my life is affected by GP. Just seeing me on the street, you would likely not realize I am sick. I do not look all that sick. People frequently ask me if I am better now, as if I’m just going to be healed one day. I cannot seem to convince them that I am never going to be “better,” not in the sense they mean. I am told I “just need to eat,” or that if I would try yogurt, I would heal. My own doctor accused me of being anorexic and advised my husband to “watch me” because she didn’t understand the nature of my disease. And though I know people mean well, it still bothers me.
I am angry because I am a control freak, and I do not like being a slave to this disease. I do not like being “helped” with everyday tasks and always having to rely on others for aid. I have screamed at, smacked, and pushed my husband away for simply trying to assist me more times than I care to remember. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control. But mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and none of it matters. I am still sick.
There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die. He does not – and I am thankful for that. I am blessed to have even one more day with my family. I think about others who have this disease who are much worse than I am. I know many, many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes or ports for nutrition. I sometimes look at them and think that this will surely be my future, too, and it scares me.
I am dying a slow death, a death by starvation. I am not getting better no matter what I do. I am dying, and there is no help, no cure, few treatment options, and little concern about it from the media, the public, the policymakers, the doctors, and the researchers. I am dying, and no one wants to hear it, or face it, or stop it from happening.
Most people have never heard of gastroparesis, and the ones who have, don’t fully understand it or decide to ignore it – dismiss it as if it is a stomachache. I am not certain that anyone who has not experienced this disease personally can ever really grasp the true horrors of it, but if these decision-makers, these people who shape my life could spend a week in my support groups, maybe they would see the never-ending torture we endure day in and day out. Perhaps then they would see what I see: tremendous physical suffering; endless doctor visits, emergency room trips, surgeries, and procedures; isolation, loneliness, depression, and resignation; financial ruin.
I don’t understand why I have this disease, why all the others in my groups have it, but what I do understand is that it is important for me to share my experiences and try to find help for us. We are struggling. We are dying. We are STARVING FOR HELP. That’s not just a slogan. That is our reality. Does anyone out there hear us? Does anyone out there care