Over the last three years, since my diagnosis with Gastroparesis, I have gradually become more comfortable with publicly sharing information about GP as well as stories regarding both my personal struggles and the types of hardships I see every day in our support groups. I am not certain how my non-GP friends feel about this. I am guessing they sometimes find it boring or even annoying. In any case, it is not something for which I will apologize, nor is it something I will cease. You see, the message is too important for that. We need awareness – and not just within the GP community. We need the non-GP world to know our plight.
But as important as it is to extend our message to the world around us, the one thing I have refused to do from the beginning (and will continue to reject) is to publicly name those in the GP community who have passed away. I am sure you have noticed the (far too) many green candles that have appeared on my page over the last couple of years and have perhaps even wondered about some of the details of the lives these candles represent. We have chosen, as a community, to largely keep this information confined to our private groups out of respect for the people who have passed and their loved ones.
What I can tell you, though, in general, is that Gastroparesis itself is not considered a terminal illness. Good news, right? Only it is not quite as rosy as it first appears. While GP itself may not directly cause death, the conditions resulting from it and the effects of our illness on our bodies over time most certainly can and do lead to death. Many times, there is an underlying cause of Gastroparesis (such as Diabetes or an autoimmune disorder) that contributes to this. It is also somewhat common for people with GP to have a “cluster” of other conditions such as IBS, Mitochondrial Disease, Lupus, Lyme, etc. that can contribute to decline in condition. Further, those with tubes, ports, and PICC lines must constantly be alert for infections (such as sepsis) and other complications that can lead to crisis. But there is also another contributing factor – one that is sometimes not pleasant to discuss but must be confronted nevertheless – and that is death due to outright malnourishment and starvation.
Malnutrition and the gradual decline and starvation resulting from it is what we all fear, and yet many in the outside world (and some within the GP community) wish to pretend that the threat is not real. Well, let me tell you, it is, sadly, quite real. On a very good day, I am able to consume about 750 calories or so, but many days, I do not achieve 500. Five-hundred calories per day. Did that register? Can you imagine the toll that this must be taking on my organs, my appearance, my cognitive abilities, my very being? I read stories every day from group members who are losing their hair, their teeth, their energy, their organ function, and their ability to function mentally. It is overwhelmingly difficult to function with so few calories and such poor nutrition.
We try to prepare ourselves (as if that is possible) for the loss of those around us the best we can. But how do we as a community and as individuals process all of this? We rise every day knowing that we may hear of yet another death in our community. Will it be someone we know? A close friend? How long before it is us? Death surrounds us, and the unspoken fear that this will be our all-too-soon fate as well is ever-present in our lives. We push it to the backburner so that we can get through the day, but when someone we know, someone we love, someone we spoke with just yesterday passes, it becomes a little more difficult to confine the idea to the corners of our minds. And we wonder – am I next?
So, when you see my articles, blogs, stories, awareness and advocacy efforts, petitions, and the like – and when you see the green candles that I have come to detest – please try to understand that this is an attempt to garner attention and to win the support and assistance of those in the outside world who might intervene and perhaps alter our fates. It is, indeed, an endeavor to honor those community members who have earned my respect, admiration, and love by virtue of their existence and by virtue of their struggle to survive. It is an effort to keep their deaths from being in vain.
And though I may not be able to share the names, rest assured that these are people, real people, with families, friends, hopes, dreams, goals, and wishes. These are people who have fought hard to survive, who have never given up, but who, through no fault of their own, have been forced to pass from this world far too soon. These are not stories or statistics to me; they are my friends. They are people who mattered, who touched my life and the lives of so many others. They are people who needed help and deserved far better than this fate.
