I had a good week, a very good week. I probably managed to consume between 500 and 600 calories per day this past week, every single day. I thought I was doing so well. I was feeling pretty good this evening, so I decided to take a couple of bites of a cookie – merely a couple of bites, not the whole cookie. I am doubled over in pain now, and I am in tears. It is agonizing. Who would believe this kind of pain could stem from tasting a couple of bites of food? I only wanted to taste a cookie. I miss food. I want to eat… I just want to eat! I want to have a normal day again, just once – one normal day, the way it used to be. It has been more than a year now since I have been able to consume a meal, and I don’t think I will ever be able to eat one again. I have a pretty good attitude toward my life and my circumstances, but the fact remains that like so many of my friends, I am not getting any better. I am dying, and it is a slow death, attributable to starvation. 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.
I know this is not what people want me to say, but nevertheless, it needs to be said. I am not depressed, and I do not fear death, but neither do I want to die. I am not frightened by the thought of death, but I am a little afraid of how painful it might be. I am also terrified about what will happen to my family when I die. I want to watch my daughter grow up. I want to see her graduate, get married, and have children. I want to see what career she chooses. I want to see what sort of woman she becomes. But mostly, I don’t want her father and her to suffer because of my absence. I don’t want her scarred by such a traumatic experience, and I don’t want her to struggle as a result of it. I don’t want it to change her, and I don’t want it to hinder her from becoming all that I know she can be. Quite simply, I don’t want her to have to grow up without a mother.
Does this matter at all to the people who make the decisions that largely determine my fate? Does it matter to the medical world, the lawmakers, the insurance companies, or the news people? Not enough. Most of them 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. Well, let me tell you, it is not just a little “tummy trouble.” I am not certain that anyone who has not experienced this disease personally can ever really grasp the true horrors of this disease, but if these decision-makers and life-shapers could spend a week in my support groups, perhaps they would begin to comprehend the never-ceasing torture we endure day in and day out. Perhaps then they would see what I see: tremendous physical suffering due to pain, nausea, and the inability to eat; seemingly endless doctor visits, emergency room trips, surgeries, and procedures; isolation, loneliness, depression, and resignation; financial distress and ruin.
Perhaps the medical world would understand the lack of compassion and concern we face on a daily basis. Many in my groups are in and out of emergency rooms, must tolerate lengthy hospital stays away from their family, and are forced to endure surgery upon surgery in an attempt to simply survive. Many of us have no effective medications or treatments and are denied insurance coverage for the few necessary drugs, treatments, and supplies we do have. Maybe after a week in my groups these doctors would see that we are frequently mistreated and even downright abused by a medical community that lacks knowledge, understanding, and/or the will to help us. Maybe these same medical “professionals” would feel guilty for their lack of desire to help and for treating us as nuisances to be swatted away like flies, without so much as an ounce of concern – guilt over making us feel humiliated, treating us like hypochondriacs and drug abusers, and for pushing us out their doors without providing any aid or any guidance as to where we might go for assistance. Perhaps they would think twice before leaving us to cry out in anguish while lying in a hospital bed being denied pain medication. Maybe they would reconsider their use of phrases such as, “there is no pain with gastroparesis” and “there is nothing more we can do.”
If the media could spend a week in my groups, would they begin to understand our need to be heard? They have no space for our stories; yet, they seem to find slots for such pressing matters as the perils of purchasing fake Final Four tickets and the opening of the latest local dog bakery. They can sometimes tolerate the chronically ill when we have sexy, prettied-up stories or when we have overcome incredible odds to survive, when we are upbeat and hopeful, but they want no part of our messy stomach and bathroom issues, our tubes and scars, and our despair at facing starvation and ultimate death. Perchance if we could learn to be a little more cheery about our circumstances, and pretend we are not bothered by our skeletal frames and hunger pains, we would gain acceptance. Perhaps if we could hide our tubes and ports and PICC lines, we would be more camera-friendly. Maybe if we could find a way to tie our stories into both local and national events, or manage to summarize our dying pleas in 140 characters or less and get enough people to “tweet” a certain hashtag, or manage to generate some sort of low-level controversy, we would get a moment of coverage from them. Would a week in my groups change their attitude and make them more amenable to assisting us? Would our pleas for help then cease to fall upon deaf ears?
If the policy makers, insurance companies, and researchers spent a week in my groups, would they put less emphasis on monetary concerns and more on humanitarian issues? Would they be more willing to fund our cause if they saw how ineffective our current treatments and medications are? Would they open their eyes to our suffering and make us a priority? Possibly the lawmakers don’t understand that when they refuse to grant us anything beyond a tiny portion of their research dollars, no one is willing to seek treatments and cures for us. Maybe they believe researchers work for free. Or maybe they believe digestive disorders are not cause for genuine concern. After all, what’s a little heartburn, gas, and bloating, right? Perhaps, after witnessing our pain and the tough choices we must make when we cannot afford the potentially life-saving drugs and treatments they refuse to cover, insurance companies would begin to appreciate our dilemma. Would they then understand what it is like to look forward to a surgery for pacer implantation as your last hope for survival only to be told it is experimental or not medically necessary and therefore will not be covered by the insurance company to which you have paid premiums your entire adult life? Perhaps after spending some time in my groups and witnessing the tics, cramps, pain, nausea, and heart problems caused by our currently available medications the FDA would consider streamlining and fast-tracking drug approval or loosening restrictions on “risky” and “potentially addictive” medications.
In the early hours of every day, I rise and head for my computer to work as long, and as hard, and as fast as I can to reach the people who might be willing and able to help us with our plight. I sacrifice time with the family I love in the slim hope that I might be able to persuade just one influential person to notice, to care, to help us. I panic if I must fritter away a day due to other obligations (which mostly consist of doctor’s appointments) because I recognize that this is time I will not be spending on advocacy. I do not know how much longer my friends and I have left, so I cannot afford to squander my time. Does anyone appreciate that we are people – human beings with the same wants, needs, goals, and desires as others? We are struggling. We are dying. We are STARVING FOR HELP. It’s not just a slogan. Does anyone hear us? Does anyone care?