Wednesday, May 4, 2016

Rant

*Note: I wrote this specifically for my Gastroparesis support and advocacy groups a little while back, but I thought perhaps it would be worth sharing here.  Since then, things have been very tough for me personally. I have done a lot of soul-searching and re-evaluating. I continue to do so. I want to fight for you, but I am somewhat shocked at the resistance and hostility with which my efforts have been met from some in our community. It may require that I take a bit of time away from this all -- or at east significantly decrease my role here. God Bless Ms. Emily Randolph Scherer for reviving this event (https://www.facebook.com/events/471111503080375/) and for all she has done to keep me (and us) encouraged. I am grateful for so many in this community who have done their very best to support me -- but it is a difficult road sometimes and requires thicker skin than I sometimes have. I encourage you all to please step up and help those in our community rather than discouraging and demeaning their efforts. Here is my original post:

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Good Morning, my beautiful Gastroparesis community – and anyone else who might happen to be reading this!  Guess what?  I am wound up!  Yep!  And you know what that means.  It means I am going to rant.  So, prepare yourselves, and please scroll on by if you don’t want to “hear” it!

Do you know why I say “my” people, “my” groups, and “my” GP community?  It is not because I am on some power trip or because I think that I have some sort of leadership position here.  It is not because I am egotistical or seek control.  No!  Rather, I call you all “mine” because I am a part of you.  You all are my life.  I love you.  I love you all.  And I claim responsibility for you – every one of you.   Indeed, I have an obligation to you, and this means that I cannot step aside, avert my glance, and ignore your problems.  No, I do not forget you for a single second.  I share your disease, your pain, and your hopes, dreams, and prayers for a cure. 

A couple of years ago, as I began to realize the seriousness of this illness, as I started to see my friends suffer and die, and as I started to understand that this could be any one of us at any moment, I decided that I could no longer sit back and do nothing.  I grew weary of watching us all get pushed around by the very family members, friends, and doctors who were supposed to be helping.  I became appalled at the number of times those in our community were accused of lying and making up symptoms, just to get attention.  I got to the point where I simply could no longer tolerate a situation in which we are all treated like something less than human by medical professionals, where we have no effective treatments, and where our illness is ignored, mocked, and dismissed.  It gradually became clear to me that I could not sit by on the sidelines any longer and listen to the people who told me I could not make a difference.

Since then, I have spent every waking hour doing what I can to help this community.  And I mean that – every waking hour.  There is not a moment where you all are not in my thoughts, where I am not contemplating our situation, or where I am not evaluating tactics and seeking solutions for this community.  I know you all have heard and likely said, “I am not my disease.”  Well, I am here to tell you that I AM my disease.  It is a part of me, and I am a part of it.  I am chained to it, often controlled by it, and keenly aware that it is never going away.  It does define me – at least in large part – and I am not ashamed of that.  It has changed me, every part of me, and it has given me a purpose in life.  I detest it and would rid myself of it in an instant if I could, but at the same time, I owe it recognition for the way in which it has made me realize how precious life and all the struggling souls around me are. 

Today, and every day, I wake up, come to my computer, and do my best to serve this community.  I do it not because I want thanks, praise, accolades, notoriety, or money.  I do it not because I wish to feed my ego, make others look bad, or seek to outdo my “competition.”  I do it because I have no choice but to do it.  No one is going to wave a magic wand and rid us of this disease.  I love you, I share this devastating illness with you, and I want our circumstances to improve.  I want to live – and I want you all to live.  But moreover, I want us to thrive! 

For weeks now, I have written (as have others in our community) about unity and the need to set aside our differences and work together to accomplish our goals.  But despite these attempts, disputes and division abound.  I am no threat to anyone – just one individual trying to make a difference – and it seems to me like that effort, and all such efforts along these lines, ought to be welcomed and supported.  We should all be working together – individuals, organizations, and any other bodies interested in advocating for this GP community – instead of trying to sabotage the efforts of others and promote ourselves at the expense of this community.   If we do not find a way to act in unison and begin exercising the power we have as a group that is 5 million strong, we will never change our circumstances.  We will never free ourselves from the effects of this cruel disease.

So, I am once again begging you to stop this.  Get over whatever grievances you have.  We have more important matters at hand!  I do not care whether you love me or hate me.  I will work with absolutely anyone who wishes to advocate for this community, and I hope everyone out there understands this.  As I have said many times before, we are all flawed.  We are human beings who make mistakes and get off track.  But there is no reason we cannot overlook these shortcomings and disagreements, set them aside, and work together for the good of this community.  Check the egos at the door, stop the power trips, push your “pet” projects to the background, cease your self-congratulatory tone, and start working together to benefit this community rather than yourself, your group, or your organization.   Get past the mistakes, the disagreements, the anger, and the jealousy.  Stop gossiping, accusing, and stirring up trouble.  Forgive, move on, and focus on what is best for this community as a whole!

I refuse to give up or be silenced.  I will continue to write articles and blogs; ask you to share my posts and links; attend tweet chats, blabs, and webinars; plead with patient organizations to include us on their sites; contact our elected officials and government agencies, the media, insurance companies, the pharmaceutical industry, and medical players; beg the public to understand and support our initiatives; and seek the help of any other group or body that might be sympathetic to our plight.  And make no mistake, I WILL NOT STOP until I am dead.  I will not shut up until I have taken my last breath.  I refuse to go away because I am threatened, my account is hacked, or your lawyer sends me a cryptic message.

We are dying!  I am dying.  Help is not going to fall from the sky and no knight in shining armor is going to come and save us.  It is up to us – each of us – to find a way to be heard.  I am one person, a person whose life has been forever altered by a chronic illness, but I am not weak-willed or powerless.  Open your eyes! Lose the excuses!  Stand up, speak up, and help! If we do not get this right, if we allow our apathy and our disagreements to paralyze us into inaction, we will continue to suffer and die.  I, for one, am not willing to lie down and perish without putting up a fight and giving it all I have.  Please, do not let this opportunity pass you by.  Unite and help our GP community!  

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