It's a Small, Small World

I wrote in a post yesterday morning: “A few days ago, my doctor asked me what I eat in a typical day, and I had no answer. I just sat there – because the answer really is, ‘Nothing.’ I am so tired of starving. I am so tired of the pain and of seeing my friends go through this. I want a normal day, just one, just a break... but it is never there. And it likely never will be again.”  That is a difficult truth to face, but one that I must if I am to cope with this illness.  My world is contracting, and I can choose to either hold tightly to the things I still have, appreciate them, and spend every precious moment cherishing them, or I can elect to feel like I did yesterday – embrace the pain, loss, heartache, and grief and allow them to steal away the moments that remain.

I am not normally one to dwell on how I wish things were or how they used to be.  But yesterday?  Yesterday was a rare exception.  I am not sure what set me off.  I think perhaps it was a picture of my daughter and me together at an event from a couple of years ago.  Or maybe it was watching her play basketball in our driveway and realizing that she was not the same small child I had once observed.  I am not positive, but what I am certain of is that something put me in a reflective and brooding mood – and things went downhill from there.

I permitted myself, for a moment, to think about the friends I have lost, the family members who no longer call, the many times I have sat alone while others have gathered together, the isolation that being homebound has brought, and the immense world that moves on around me and without me.  I allowed myself to experience all the physical pain and the sheer agony of trying to get through each day without food.  I chose to feel, really feel, the loss I have endured.  I did not distract myself.  I did not pursue alternate actions or thoughts, and I did not change my perspective as I usually will myself to do.  I practiced none of the techniques I know to be beneficial.  Instead, I sulked, pitied myself, and mourned the passing of my old life.

Since the day of my diagnosis with gastroparesis, I have tried to accept and make the best of my circumstances.  I am not an optimist nor a pessimist; I am a realist, and I believe in doing what I can with what I have.  No point in dwelling on what might have been, right?  Further, I have, for the most part, come to understand that though my life will not be exactly what I once envisioned, it still has value and meaning.  I am an advocate and an administrator in several online support groups, and I find that helping others aids me in shifting my focus away from my own problems and maladies.  It helps me to feel that I am making a difference, albeit small, in the lives of others and in bringing awareness to this cruel disease.  My efforts in this area have given me purpose – and that is generally enough to get me through the roughest of the long days.  But yesterday it struck me just how small my world has become, and it made me wonder how much more it can and will diminish. 

As I looked at the photo of my daughter and I visiting with the survivors of the USS Indianapolis who had graced us with their presence in downtown Indianapolis, I remembered how it felt to be there that day.  It was a good day.  I used to relish book signings, trips to museums, watching movies at the theater, dining in restaurants, visiting relatives, attending concerts and sporting events, and a whole host of other happenings.  I used to have a life outside the walls of my home.  But those days are long gone and are likely not coming back.  Nowadays, I am fortunate if I make it to my medical appointments. 

As my daughter made basket after basket while I watched through the window, clinging to the heating pad covering my stomach and abdomen, I recalled how I used to play “Horse” with her when she was smaller and was reminded of the leisurely walks we once took through the neighborhood.  I thought of our trip to the ocean from several years back, the ocean that I love more than any place in the world, the ocean that I will likely never see again.  I remembered the times we visited the zoo and sat by the pond eating a picnic meal, and I reflected on how much I miss not just those outings but the food itself.  (It has been more than two years since I have consumed anything close to a meal, and it has been many months since I have been able to take more than a couple of bites of even soft foods.) 

As I sipped my Ensure, I thought of sitting with my husband at an ice-cream shop shortly before my child was born and experiencing the strange realization that it would likely be the last time we would make such an outing without our child.  I thought of our many vacations, visits to festivals and fairs, walks alone, anniversary dinners, and holiday gatherings with family.  I recalled the elaborate desserts I used to make him when I was trying to perfect my newly-found baking skills just a few years ago – a hobby that holds not quite so much delight for me now.  I recollected the ballroom dancing classes I forced him to take and the joy they ended up bringing us.  I permitted myself to reminisce about every single moment, and I grieved over the fact that I failed to realize then that I would never get these times back.  I guess that all this time I have held out hope that these things would someday happen again; but yesterday, when I took a good hard look at how this disease has already progressed, I suppose it hit me that this will surely never be.

As a family, we have made the necessary adjustments.  We do what we can to enjoy our time together at home, and my husband attends (solo) the events that require an appearance.  We have learned to cherish the small moments and to be thankful that we can rely on each other for love and support.  On rare occasions, we still manage to delight in a brief excursion (although I pay for such outings in pain for many days afterward), and we relish those times.  But yesterday, there was the nagging… the memories flooding my mind.

I was reminded of my child’s conversation with a relative a short while ago: “Today was such a good day!  Mommy took me shopping and we were able to stay out a whole two hours!”  I thought of the many times she has stood behind me, gently caressing my back, whispering, “Are you okay, Mommy?  Is this a bad day?”  I heard the echoes of her sweet voice comforting me, her graceful and compassionate response to being told that I would have to miss yet another choir performance, play, Tae Kwon Do tournament, or birthday party: “It’s okay, Mommy.  I understand.  You can’t help it if you don’t feel well.  Daddy will videotape it.” I replayed in my mind all the moments when I have heard her patiently explain to teachers, friends, and everyone else who has inquired a thousand times, that her mother has gastroparesis and this means her mother cannot do the things that many parents do.  I further recalled how this beautiful, precious little being has participated in every “Go Green” event and campaign we have ever held – and has done so with enthusiasm.  All the nights I have heard her pray for healing and comfort for me and for all of those in my GP community came to mind as well.  I considered how difficult it has likely been for her over the past couple of years to hold her tongue when I have screamed at her for no reason at all other than my pain getting the best of me. I contemplated how significantly this illness must be impacting her well-being and happiness, and while I admire her fortitude, I mourned her loss of a “normal” life.

I thought of my husband who comes home exhausted every night from work and still must help care for this beautiful child and attend to the chores that have piled up during the day – tasks that I could easily complete a year ago.  I remembered the many episodes where I have watched him “hide” from me as he eats so that he will not intensify my torture.  I played over the moments in my mind – him patiently enduring my screaming fits of anger and apologizing even when he has done nothing wrong; him holding onto me when I am crying and on the verge of throwing in the towel, despite the fact that I have likely just scolded him, pushed him away, and blamed him for every horrible thing that has ever happened to me; him telling me that I am beautiful, though anyone can clearly see the truth in the dark circles under my eyes and in the skeletal reflection in my mirror.  I was reminded of the many evenings he has rubbed my shoulders and feet, despite his own fatigue, so that I can relax and sleep well.  I thought of how often I have heard him whisper a prayer with our child in the other room, for my healing, strength, and peace.

Yesterday, I dwelled on all we have lost, all we have borne, the abnormality and horror of it all, the “smallness” of my world – and it was nearly unbearable.  I tried to focus on the good that has come out of all of this, and there is much: friendships, compassion, understanding, wisdom, passion, spiritual blessings, and more – but there was still the nagging.  What if my world, our world, diminishes even more?  What will happen when my daughter graduates or gets married, and I am left alone?  How can I endure her absence when I have so few treasures left?  (I have often wondered if I will be around to witness the significant events in her life, given my current deteriorating state of health, but I rarely think about what will happen if I do survive that long.)  And then truly awful thoughts came.  What if my husband gets sick – or decides this burden is too much and abandons us?  What if he passes away?  Who will care for us?  Who will be my support system then?  What if I am truly on my own one day?  What if, instead of dying early, I actually live to see those days?  Yesterday, those uncertainties and fears were too much, too much.

But today I am in a different state of mind.  Today, I grasp that I cannot remain in my dark thoughts.  Today, I am focusing on other truths and approaching the moments with a fresh perspective.  I have a devoted husband; an affectionate, trusting child who admires and adores me; compassionate, supportive friends and loved ones; groups and projects that give my life meaning and purpose; and a loving God who still watches over me and directs my path for good.  I have beautiful, precious memories that no one can ever take from me.  I have a family that knows the true meaning of love and appreciates every moment we have been granted.  Most days, I have hope, however dim, for a brighter future – if not for me, then for the millions who follow me and share in this cruel diagnosis.  

Today, I choose this life, whatever bit of it I still have left.  I choose purpose and willpower.  I choose faith and hope and the struggle to overcome the hardships and obstacles.  I choose to advocate and to support others on this same difficult path, and I choose the fight that goes along with this journey.  I choose to pursue the thoughts, feelings, techniques, and actions that I know will get me through the day.  I will embrace the good for as long as I can and recede deeper into the center of the shrinking circle of my life until I can retreat no more.  It has been a good life.  It is still a good life – if I choose for it to be.  

Oh, the Joys of Advocacy! Should I Throw in the Towel?

Let’s talk about GP reality!  GP reality is that every single day I struggle to get out of bed, and when I accomplish this, I sometimes wish I hadn’t.  GP reality is that I am often nauseous and occasionally vomit.  I am starving, miss food, cannot eat, and am in pain much of the time.  My stomach and abdomen are bloated, and they are burned and permanently scarred because I must use a much-too-hot heating pad just to make it through the day.  GP reality is that I can almost never leave my house, and when I do manage it, I can only stay out for short periods of time and pay for it dearly the next few days.  I miss nearly all family gatherings and significant events in my husband’s and daughter’s lives.  GP reality is that I am so tired I cannot walk up the stairs at night by myself anymore, and, in fact, I cannot even remember how I got into bed most evenings.  GP reality is that I see people suffer and die around me every day and wonder if I will be next. GP reality is that no one wants to hear this.

GP reality is that even though I am quite sick, I work in the support groups.  And because I am an administrator in many of them, I have to make tough decisions based on the rules and what is best for the groups – and many people hate me for that.  No matter what decision I make in a dispute, or regarding a rule, someone ends up unhappy with me.  I try to be gentle, and I try to explain, but it does not ultimately make a difference.  They still detest me.  Yet I go right on making those difficult decisions, despite their attitude and push-back, because I care about the groups as a whole and want them to survive.

GP reality is that because I have chosen to advocate, I sit here sick at my computer every day, all day long, and beg someone, anyone, to help us.  GP reality is that very few do.  Most of what I do is ignored by those inside and outside of the Gastroparesis community.  GP reality is that probably very few are reading this. 

GP reality is that not all those who proclaim “love” and “light” demonstrate these qualities toward others.  I am mocked, threatened, harassed, and told I am an embarrassment.  I am accused of ignoring and dismissing people, stealing ideas, taking credit where none is due, and “bullying” people.  GP reality is that no matter which projects I decide to pursue, someone thinks these are not quite as worthy as their own “pet” projects.  GP reality is that I can get almost no one to pay attention and contribute anyway. 

GP reality is that when I say “my” people, “my” groups, and “my” community, I am accused of being on a power trip or of thinking that I have some sort of leadership position here that I do not officially hold.  GP reality is that it is not because I am egotistical or seek control.  No! Rather, I refer to people in the Gastroparesis community as “mine” because I am a part of this community.  These people are my life.  I love them, and I claim responsibility for them – every one of them.   Indeed, I have an obligation to them, and this means that I cannot step aside, avert my glance, and ignore their problems.  No, I do not forget them for a single second.  I share their disease, their pain, and their hopes, dreams, and prayers for a cure. 

GP reality is that though it makes me uncomfortable to discuss the most intimate parts of my life, I share very personal stories, thoughts, and feelings in an attempt to make people understand what we go through, only to be told that I am self-promoting and egotistical.  GP reality is that my words, and my story, are the only weapons I have in this battle against GP.  GP reality is that though I try very hard not to harm or upset anyone, it is never enough, and those who want drama and strife still actively seek to create it, even to the point of inventing stories. 

GP reality is that there are those in this community (individuals and organizations) who refuse to share articles, posts, pictures, memes, events, blogs, and other awareness-related information simply because I have written or endorsed it.  There is no thought or concern regarding what is beneficial for the community as a whole.  If it does not promote their own personal cause, then it is not acceptable.  If I do not mention their name, their cause, or their organization, then it simply does not get shared – and, in fact, they work to shut down such information entirely – merely because it was not them or their group that accomplished the goal or initiated the movement.  GP reality is that everything I do now is public, every breath I take is scrutinized, and if I have an “off” day, I lose followers – which means I hurt our cause.  GP reality is that this is a heavy cross to bear.

GP reality is that we, as a group, are largely ignored, that very few care about our plight, and that even the ones who do are highly unlikely to get involved in any meaningful way.  GP reality is that we push for awareness proclamations, bills, disability, better medical care, effective treatments, and a cure – but that these things will not likely come in our lifetimes.  GP reality is that right now, at this moment, many of us are mistreated, misunderstood, receive sub-quality care, are in financial ruin due to unemployment and outlandish medical expenses, and that we mostly go unnoticed. 

GP reality is that GASTROPARESIS STINKS!

But you know what else is GP reality?  GP reality is that even though I am sick and many, many times want to throw in the towel, I keep going – as do all of you.  We find ways to “suck it up” and move on.  We tolerate the pain, nausea, and weakness, and we manage to get through the seemingly endless, meaningless days, hoping for something better in the future.  We do what we can, despite the limitations this illness imposes on us, and we live to see another day.

GP reality is that even though some in my groups dislike my pronouncements (and me), most do not.  Largely, they understand that not everyone will always agree upon specific rules and that disputes are bound to happen.  We often have different perspectives and manners of dealing with our illness and the complications of life that stem from it, and the bulk of our members accept and respect the choices of others.  Most people enjoy the groups and find them to be a source of support, information, friendship, and understanding.  They are safe havens for the vast majority of GPers who join.  GP reality is that most group members come into these groups every day and try to help people, complete strangers, because they care and want to make a difference in the lives of others.  They are kind, compassionate souls who sacrifice their own comfort and set aside their own needs to assist those who are lost in finding a way to survive this cruel disease.

GP reality is that though I am often harangued for my advocacy work, I am also praised and thanked far more than I deserve.  Many people here go out of their way to show their appreciation with their kind comments, “likes,” and private messages expressing their gratitude.  Some have even sent cards and gifts.  Others simply follow along and remain on my friend list and in my groups, which is, in and of itself, a means of support.  GP reality is that though I often feel like I must defend myself against untrue and unkind accusations, the pressure to do so comes only from me. 

GP reality is that when I want to “throw in the towel,” scores of you write me or comment on my posts to show me that I matter and that what we are all trying to do together matters.  GP reality is that I have real, true friends here who show me more gentleness and support than I have ever known before in my life.  And every now and then, GP reality is that someone “important” out there notices an article, meme, poem, or video that I have made and shares it.  Occasionally, someone contacts me to let me know that we are being heard and that there is hope for the future, and on rare occasions, even an organization that finds me distasteful admits that advocacy is really taking off and our efforts are being felt. 

GP reality is that, sometimes, I have a far better turnout for “green” events than I expected, or a project like “Right Care Action Week” inspires those who normally pay little attention to take notice – or even to participate.  On occasion, someone who has never heard the word “Gastroparesis” calls or writes to let me know that because he saw my blog or video, he now knows of our struggle.  And there is the hope that one day, one of our projects, perhaps #TakeABite4GP, might really take flight outside of our little GP community.  GP reality is that it only takes a few people in the right places to get us the help we so desperately need.

GP reality is that though I detest this illness and the damage it has done to me and so many of my friends, I am truly far more blessed than I was before being diagnosed with Gastroparesis, and I am likely wiser, more compassionate, and more connected to others than at any other time in my life.  I have experienced genuine kindness, understanding, friendship, love, hope, and belonging.  I am more keenly aware of the pressing needs of those around me and of how desperately they require help.  GP reality is that I now have a purpose.  And that purpose is you – it is serving the needs of my Gastroparesis community, the chronic illness community, and my fellow human beings.  GP reality is that I need to learn how to “shake off” the negative comments, attacks, jealousy, and harassment and do what I know I need to do: advocate. 

Yesterday was a very bad day – one of the worst I have ever had – but today, I still stand.  My community is in need.  My friends are suffering.  How can I turn my back on that?  I am weary, and I get discouraged, but I have to continue the fight.  It is life or death. 

So, I ask you to please pardon my rants, my insecurities, my lack of understanding, my bad decisions, and all my other frailties.  I beg you to forgive me for not doing more, for my lack of ability to accomplish our goals, and for all my other failings.  GP reality is that it is not due to lack of desire or will.  GP reality is that I am trying. I am trying.

TAKE A BITE 4 GP!

Thank you for your interest in our new awareness campaign: ‪#‎TakeABite4GP! We were inspired by a movement that the Cystic Fibrosis Foundation recently undertook and adapted it to fit the needs of our community (https://www.cff.org/Take-Action/Raise-CF-Awareness/Raising-Awareness-With-TakeaBreathforCF/). We are hoping many of you will wish to get involved by creating your own brief clip and by recruiting friends, family members, medical professionals, the media, and anyone else willing to join in this effort. Challenge them to create a video or snap a picture that will help us spread this campaign and increase awareness for GP!

We would love to see supporters of our Gastroparesis community "Take a bite for GP!" Can't eat even a bite? No problem – hold an empty spoon. Don't like video? Hold a sign and take a picture! The idea is to get people to notice that we cannot eat with the ease that "normal" people can. Be creative. We know you can!

If you would like to include a request for donations to one of our digestive disorders organizations, we have set up two funding sites/links for your convenience:

·         International Foundation for Functional Gastrointestinal Disorders (IFFGD): www.razoo.com/us/story/Take-A-Bite-4-Gp

·         Association of Gastrointestinal Motility Disorders (AGMD): https://www.razoo.com/us/story/Take-A-Bite-For-Gp

The intention is to start spreading the word and creating these brief video clips and/or photos for release. Post them on your personal pages and all over social media sites. Challenge your loved ones to do the same. We hope to have the campaign off and running during July and in full swing during August, our Gastroparesis Awareness Month. We want to see these clips all over social media!

Hope you will join us and spread awareness for GP!

** For additional information, discussion, and ideas regarding this campaign, please join our public group at https://www.facebook.com/groups/TakeABite4GP/.  For more information about GASTROPARESIS, please see the brief summary below. **

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Gastroparesis literally means “paralysis of the stomach.”  It is a digestive motility disorder in which the stomach muscles, controlled by the Vagus nerve, fail to contract and move food from the stomach into the intestines at the proper rate.  Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles in preparation for further digestion in the intestines.  This process is slowed in those afflicted with Gastroparesis, resulting in food being “stored” in the stomach for an abnormally long period of time.

This slowing of the stomach emptying process can cause debilitating and sometimes life-threatening symptoms, including stomach/abdominal pain, bloating, nausea, vomiting, heartburn/GERD, and early satiety and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, esophageal damage, blood sugar fluctuations, bezoars, and overwhelming fatigue.  

The National Institutes of Health (NIH) estimates that more than 5 million people live with Gastroparesis.  The most common known cause of this condition is Diabetes, which accounts for about one-third of the cases.  Other known causes of Gastroparesis include neurologic disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders, complications resulting from surgeries, various medications (such as some narcotics and antidepressants), and direct damage to the Vagus nerve.  Most cases of Gastroparesis, however, are labeled “idiopathic,” meaning that there is no known cause.  (Some researchers and physicians theorize that in such cases the cause may be a viral infection, but this has not been scientifically proven.)

Gastroparesis is most commonly diagnosed by the Gastric Emptying Study (GES), a procedure in which radioactive material (food) is traced by a scanner as it moves through one’s digestive tract.  This test allows one’s doctor to track the rate at which food travels from the stomach to the small intestine.  Other methods of diagnosis include upper endoscopy, barium x-rays, gastric manometry, and (less commonly) the smart pill (which, when swallowed, transmits data regarding the rate of passage through the digestive tract).

As of now, there is no safe, reliable, and effective treatment for Gastroparesis – and there is no cure.   Available treatment options include often ineffective surgeries, such as Gastric Electrical Stimulation (pacemakers) and pyloroplasty; medications which carry the risk of serious side effects, such as Reglan (which comes with a “Black Box” warning from the FDA) and Domperidone (which has not been FDA approved); feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief.

Living with Gastroparesis is challenging, both physically and mentally.  It is truly a life-altering diagnosis.  We seek awareness, better treatments, and, ultimately, a cure.