VIRTUALLY ALIVE?

I woke up this morning to two more deaths in our Gastroparesis community.  These days, I dread opening my computer because it seems there is never a break from the death and grief that surround us.  I was expecting to put up a cheery post about Virtual Advocacy Day.  I was all prepared to write a nice little commentary on how we should fight to be heard – ready to try to spur our community into action.  But instead, I was once again forced to post the ever-looming green candle that I have come to both love and hate.  I no longer have unique or special words to announce these passings.  I have offered prayers and condolences so many times that I cannot find a new way to express my sorrow.  I want to curl up and hide somewhere; but it is Virtual Advocacy Day, and we have a bill that needs to be passed, so I once again tell myself all the many reasons I must ignore my feelings and move on with the day as planned.  Indeed, if I need motivation, it is times like these that should inspire me into greater action. 

This grief and these deaths, this fear that it will be one of my very close friends today or that perhaps it will soon be me, this love I have for all those who have passed away and for all those who very well could, this is why I advocate.  These people, who fight so hard to stay alive and to remain upbeat, to live their lives as if the threat of death did not hang just above them – they are why I cannot remain silent.  It is because of the many souls in our GP community who come into our groups every single day and do their best to spread cheer, offer advice and information, and speak kind words to those in dire need that I do not sit and stew in my grief.  And it is for those poor, weary, struggling friends who are in physical agony, who are fighting alone with no one to help them or comfort them, who can no longer afford to care for themselves and their families because of their hopeless financial situations – the mounting medical bills and unemployment, that I pull out my soapbox and encourage others to do the same.

I hate these green candles for the deaths they proclaim, but I love them for the beautiful souls they represent.  These are not people who “gave up” or “lost” the fight.  Nothing could be further from the truth.  No, they battled as hard and as long as they could against a vicious illness that robbed them of everything and against which they had few weapons.  The flame on these candles has not been snuffed out; it forever burns to symbolize the endless effort these individuals put forth to persevere despite all the hardships.  These are not people who failed; they gave it their all and fought to their last breath.  They inspire us and compel us to continue to wage our own wars against the cruel illness that ravages our bodies.

They remind us that even in the midst of pain, grief, and looming death, life is precious, and we must live it to the fullest because we are not guaranteed a single day.  They implore us to believe that we did nothing to deserve this affliction, that we are not worthless, or valueless, or insignificant, or “lesser” because we fell ill, and that our lives MATTER.  We are ALL fighters, and we are doing the very best we can to survive. 

But we merit so much more than mere subsistence.  Indeed, our goal is to flourish.  We desire and warrant treatments that allow us to thrive.  We seek the kind of support and respect, treatment and conditions, and attention to our needs that will allow us to genuinely LIVE our lives rather than spend them in hospital beds and dark lonely rooms, struggling to meet basic needs, consumed with pain and fear.  We deserve a life free from the limitations imposed by Gastroparesis.

And so, I advocate – day after day, all day long, without ceasing.  I post on my personal pages, in groups, all over social media, and on websites.  I write articles and poems, create memes and graphics, establish and administer groups, and invite you to “green” events.  It is my duty to myself and to all the members of this community to do so.  I cannot look away and pretend that all is well.  I cannot ignore the pain, loneliness, hopelessness, despair, and death that surround me – and I hope that none of you can either. 

I ask you all – members and non-members of the Gastroparesis community alike – to please help us in our efforts to find an end to this life-altering, destructive, and often deadly disease.  I ask you to sign our petitions, support our bills and proclamations, send letters to your congressional representatives, and light your green candles for those who have fallen.  Educate your family, your friends, your doctors, the media, and the public.  Join our events and shout our pleas from the rooftops and streets if necessary.  DEMAND better treatments and a cure for those in the GP community.

Please do not avert your glance.  Do not ignore our pleas.  There is no one else – only you.  We will not be magically cured or relieved of our burdens.  We need YOUR help – every single one of you, ill or healthy.  We cannot afford to sit back, back down, remain complacent or apathetic, or cease our awareness efforts.  Our very lives depend on it.  How many more candles can we bear?

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We encourage you to join in our Virtual Advocacy Day and fight on our behalf to pass HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015, which would expand research and promote awareness of functional/motility GI disorders such as gastroparesis. This bill is designed to help promote education of physicians and the general public, increase efforts to find new and effective treatments, expand clinical research, and create new medical centers designed to study these disorders and share information with others. I urge you to read the text of the bill and contact your representatives. Ask them to sign on as cosponsors and support this bill! I cannot overestimate the importance of this bill. You can find additional information and read the text of the bill at either https://www.congress.gov/bill/114th-congress/house-bill/2311 or https://www.govtrack.us/congress/bills/114/hr2311.  You can electronically sign and send a letter urging your congressional representatives to support HR 2311 at https://buildquorum.com/actions/1996.

Please consider joining our event at https://www.facebook.com/events/1725246334422271/.  Show our Congress that we are indeed 5 MILLION STRONG!