Wednesday, October 17, 2018

The Fall


If you have never met adversity and no troubles have crossed your path...

If you have never fallen, never scraped and clawed, never fought desperately to scale the slippery walls of the black pit of despair...

If you have never rued your frailties and inadequacies or railed against the injustices which keep you mired in the muck, stuck in your sorrow...

Then you have also never known the exhilaration of the climb, of survival, of defying the odds. You have never felt the power which throbs within, never loosed the beast which longs to roar.


If you have never met obstacles or confronted hurdles...

If you have never watched helplessly as hope slowly crumbles and slides through your fingertips, never desperately gripped the receding ground, the quicksand which surrounds, as you cling tightly to your sanity...

If you have never felt the bitter loss of the fall or known the pain of beginning again, time and time again, never sure of the ascent...

If you have never felt the sting of defeat, the gut-wrenching agony of the loss...

Then you have also never known the sweet bliss, the gentle kiss, of victory.


If you have never known hunger or deprivation...

If you have never gazed up from the murky bottom of the endless abyss of self-loathing to the towering heights of pride, never felt the longing to reach the light, ever so dim...

If you have never glanced in the mirror of your failures and shortcomings, never cried out in horror at the image before your eyes... 

If you have never yearned for your release, never regretted your crimes, never acknowledged your lows...

Then you have also never known passion or desire, never lusted for pure freedom, never craved nor tasted the satisfaction of accomplishment.


Saturday, October 6, 2018

Taken by the Wind

I had a dream last night.  I was sauntering through sunny fields, cradling a box filled with all the jewelry I have collected and held so dear over the years – priceless pieces, though only in my estimation, I am sure.  It was a glorious day, peaceful and calm, and I was content to stroll leisurely, without a care in the world.  I was happy, oblivious to the storm which was brewing.

Then, in an instant, the sky darkened, and the wind howled, the force of it propelling me forward, causing me to stumble.  The tempest came from nowhere, disrupting my peace, catching me off guard, and frightening me with its intensity.  I was thrown off balance and my box of precious treasures emptied itself into the swirling gale.  I cried out, clutched tighter to my prized possessions, longing to hold on, but to no avail.  The contents were caught up in the whirlwind, snatched from my grasp, my attempts futile.

When the winds died down, I surveyed the aftermath and ran frantically through the fields in search of my belongings.  They were scattered about, some in large inaccessible pools of water, some embedded into the ground so deeply they refused to release, and many nowhere to be seen at all, seemingly gone forever.  I collapsed to the ground and wept over my loss, but after a time, I pulled myself up and went to gather any articles which might be left. 

One by one, they appeared to me:

… a necklace with a raven, black as midnight, proud and strong – a representation of logic, cleverness, sharp-thinking, and intelligence – a meaningful favorite of mine.  It was dusty, covered in film, and, though I tried my best to wipe it clean, the coating remained. I confirmed the damage and dropped it in my box.

… a tiny pin, a small bunny, given to me as a child by a friend, holding little monetary value but a wealth of sentiment, a reminder of my untroubled youthful days.  It was mangled, bent, beyond repair.  I grieved the loss but returned it to my box.

… my high school class ring, which I once esteemed and swore to never remove, lay in the mud, scratched, and emptied of its stone.  I ran my fingers over the hole, accepted the regret, and placed it in my box.

… my wedding ring, a cherished symbol of my eternal commitment to another who loves me as deeply as I love him.  It was dented, misshapen, a perfect circle no more.  I clenched it tightly in my hands, caressed it, uttered silent appreciation its ends were still joined, and gently placed it in my box.

… a beaded bracelet, dangling a spoon, handmade by my daughter, whom I value above all, as a tribute of her adoration and a recognition of my frailties.  It was tarnished and worn, but as I gazed upon its new patina, it somehow seemed more charming than ever before.  I kissed it lightly, full of gratitude, and added it to my box.

The damage was done – my collection incomplete, imperfect.  I wept bitterly over my forfeiture and mourned that which would never again be whole. But I acknowledged the remnants as well, thankful I had not lost all, and as I slowly lifted the box and sifted through my remaining trinkets, I noticed a small chest at the bottom, one I had until now overlooked.  It had not been tossed to the wind with the others but had stayed safely tucked away through the storm.  As I marveled at the thought, I opened its lid, and revealed its contents: encased in glass – a present bestowed upon me by my youngest brother when he was a small child, relegated to the bottom, covered by the grander jewels for so many years – a tiny mustard seed… my hope, my faith, my future.  As the message sank in, tears of gratitude flowed.

Monday, September 10, 2018


There is a false presumption among some that the chronically ill do nothing more than spend their days in bed, wailing in agony, and, if those of us with chronic illness are ever witnessed enjoying a rare good moment, it is further presumed by these misguided souls that we “must not be that sick” or that we have somehow been instantly and magically cured.  Unfortunately, because of this subtle pressure (intended or not) to perpetually appear and act ill, lest we not be taken in earnest, many in the chronic illness community conclude we must never allow others to see us in a lighthearted, pleasant moment.  We question in our own minds whether we can indeed be ill and have relatively good times and feel incredible guilt over any enjoyment.  We doubt ourselves and often feel compelled to appear in a constant state of agony, ceding to those who judge us as inventing or exaggerating our condition merely because we seek attention, pity, or avoidance of responsibilities.  We make the mistake of believing we must sacrifice the good times and speak only of our misery so that others will take our illness seriously.  

Much of the problem stems from a misunderstanding of “chronic” illness.  To be chronically ill does not necessarily mean that every moment of every day we suffer.  Unfortunately, some do, but others experience intermittent symptoms and/or symptoms which vary in intensity from mild to quite severe.  Chronic illness can be unpredictable – disabling one day and bearable the next, stable for a spell and beyond control, even life-threatening, at other times.  We must take advantage of the fleeting moments in which symptoms are minimal to have any sort of decent life.

In addition, even those of us who do have constant symptoms have often become masters of disguise and have learned to mask our symptoms for the benefit of others.  We have become accustomed to pushing our pain to the back of our minds so that we can participate, if only briefly, in everyday “normal” life.  What the world sees is what we allow it to see, and our private moments of pain and anguish remain secret.  We are ill, but we hide it well. 

The impact of an illness on one’s life should not be judged by a single moment in time.  Those who doubt and induce guilt would do well to understand that outer appearances often deceive.  The chronically ill need not feel guilty for rare feel-good moments nor for clinging to their desire for normalcy.  I leave you with the following explanation of sorts, thoughts from my own life which has been deeply impacted by Gastroparesis, a life-altering digestive motility disorder which has robbed me not only of my ability to eat but also of any semblance of “normal,” in the hope you will truly “see” what is often “unseen” and we might finally set aside the judgments and be lifted of our guilty burdens:

It does not mean I am "cured" if
... you see me eating a forbidden food. I am sometimes so hungry and tired of protein drinks that I am willing to cope with nausea and/or vomiting for a moment's pleasure, for a mere morsel of a food I have not tasted in years. I am also likely fully convinced I will die TODAY if I do not find a way to consume more calories, even if doing so results in agony beyond compare.
... you see me donning makeup and a nice outfit, laughing, enjoying a movie, a concert, or my daughter's school play. There are times I am so weary of looking at four walls I could scream. And even though I will pay for this excursion dearly with pain and fatigue, it is worth it just to see a smile on my daughter's face and to know that, for a brief time, we did something "normal" together and I did not disappoint her, as I have a million other times. Please note, my attendance likely means I have gone without food and drink for the last few days, as that is now the only way I can manage to stop the symptoms which otherwise prevent me from attending such outings. And when the event ends, I will most assuredly go a few days more without nutrition, as the exertion will sicken me to the point I cannot immediately bear the added suffering of eating and drinking.
... I say I am fine. I do not mean "fine" as you perhaps define it. I mean that as a serious, excruciatingly painful, life-altering, daily chronic illness goes, this is not one of my absolute worst days, and I may actually survive it. Alternately, I may mean, "I know you do not really want the truth and are simply being polite, so I am going to do us both a favor and tell you what you wish to hear, even though I feel as if I may collapse at any second." My smile often masks my true emotions and symptoms and is intended only for your comfort.
... I speak of a medication or therapy improving my symptoms. Perhaps one of my treatments brings my pain level down from a 9 to a 7 or lessens my nausea. This does not mean I am suddenly able to function at 100% or that I can now fully participate in all normal, pre-diagnosis activities. Further, simply because a therapy helped today, that does not mean it will tomorrow.

... I write an essay, post a meme, record a video, or join a chat. To avoid total isolation, I largely connect online now.  Further, it is the means by which I advocate, and, despite my struggle, I manage to show up, speak up, and fight -- because NOTHING is more important to me than finding a genuine cure.

My good moments are few, and I refuse to feel guilty for taking full advantage of them.  Thank you for your willingness to see past initial appearances and for acknowledging the serious nature of my illness.

Sunday, August 12, 2018

Be Bold for Gastroparesis (#BeBold4GP)

August is national Gastroparesis Awareness Month, and we need your help!  

Gastroparesis, or “paralysis of the stomach,” is a gastrointestinal motility disorder in which the stomach muscles fail to contract and move food through from the stomach to the intestines at the proper rate.  It is marked by symptoms such as nausea, vomiting, GERD (or acid reflux), early satiety, and stomach/abdominal pain, and it can lead to some potentially serious complications such as extreme weight fluctuations and erratic blood sugars, chronic fatigue, esophageal damage, blockages of the digestive tract, dehydration, and malnutrition.  Currently, there are no consistently safe, reliable, and effective treatments, and there is no cure.

The NIH estimates 5 million or more of us live with gastroparesis, but despite our numbers, we are considered an “orphan” disease due to the lack of resources, support, and attention we garner.  Gastroparesis is little-known to the public and often misunderstood by healthcare professionals and others who impact our care.  And, so, it is imperative that we, as a community, lift our voices in a united front to raise awareness and bring about much-needed change.

On a personal note, I began to advocate for the gastroparesis community shortly after my diagnosis (February 2014), upon joining an online support group where members shared stories of their struggle to be heard, understood, and cared for, by not only their loved ones, but also by segments of the medical community blind to the nature of this illness and the requirements of this population.  It quickly became clear to me that many of us felt stigmatized and abandoned and were in desperate need of proper care, and, so, I decided I could not remain on the sidelines and do nothing or listen to people who told me I could not make a difference.  I decided to “be bold” for the people in my community who feel as if they have no control over their circumstances and to serve as a voice for those who sometimes feel voiceless. I have since been joined by many others who share that desire to make a difference and that passion for change.

Collectively, we fight for all involved in our care – loved ones, medical professionals, insurance and pharmaceutical companies, and policymakers – to work together for our good.  We wish to be valued as the unique individuals we are, to be believed, and to be treated with compassion and dignity by all who touch our lives.  Further, we push for those in power to respect the seriousness of our illness, acknowledge the hardships that flow from it, fund research, support education and awareness, and recognize gastroparesis as the debilitating condition we know it can often be.

We work toward a healthcare system comprised of doctors/specialists who are informed about our illness, who are near enough and plentiful enough that we need not travel long distances for treatment, and who are readily available for appointments, so our care is not delayed. We seek physicians who acknowledge our humanity and respect our individual wishes and goals, who are willing to help us understand our care options and collaborate with each other and us to find treatment plans which improve our quality of life, as we define it, rather than abandoning us because we are "too complex" and there is "nothing more" they can do.

We urge researchers and pharmaceutical companies to search diligently for innovative, safe, effective, and affordable treatments and cures – and we call for adequate funding of such pursuits.  We implore the FDA to streamline processes and expedite new drug approvals, and we ask our insurance companies to cover treatments which we know from personal experience help with our symptoms.  We fight to be free to make our own choices and to weigh the risks of medications and therapies for ourselves.

We beseech our loved ones to look upon us with compassion and treat us gently, to believe this illness impacts our lives in meaningful and significant ways, and to respect and accommodate our very real physical limitations.  We ask for their kindness, patience, and support, for their listening ears and accepting hearts, and for their assistance in spreading awareness. 

We demand nothing short of a world in which all involved in our care are educated about our illness, comprehend its impact on our lives, offer support, respect our right to self-determination, aid in spreading awareness of our disease, and assist us in getting the help we so desperately need. We hunger for the day where we are no longer overlooked, unknown, taken for granted, mocked, or mistreated, but, rather, where we are heard, cared for, and valued by all those who hold the power to spread our message and transform our care.

We in the gastroparesis community face daunting challenges, but we are not without hope, passion, ability, or recourse!  We encourage providers, patients, patient groups, family and friends, and the public to educate others about this life-altering chronic illness.  And this August, we invite you to join our #BeBold4GP campaign, as we stand up, speak out, and fight to raise awareness in our quest for better treatments and, ultimately, a cure. (Please see our video presentation at 

#BeBold4GP and help us usher in the changes we seek!

Thursday, July 12, 2018


It does not mean I am "cured" if

... you see me eat a cookie. It most likely means I am so hungry and tired of protein drinks and Kefir that I am willing to cope with nausea and/or vomiting just for a moment's pleasure, for a mere morsel of a food I have not tasted in years. It might also mean I am fully convinced I will die TODAY if I do not find a way to consume more calories, even if doing so means agony beyond compare.

... you see me out, perhaps enjoying a movie or concert or watching my daughter's school play. It most likely means I am so tired of looking at four walls I could scream, and if I do not get out for just a few hours, I fear I will go insane. It also means that even though I will pay for this dearly with pain and fatigue, it is worth it just to see a smile on my daughter's face for a change -- to know that for a brief time, we did something "normal" together and I did not disappoint her, as I have done a million times before, by my absence. It also undoubtedly means I have gone completely without any sort of nutrition for the few days leading up to this event because that is the only way I can manage to leave my home now -- as eliminating life-sustaining food and drink is the best chance I have at also eliminating the pain and nausea which would prevent me from attending such outings. Oh, and when the event ends, I will most assuredly go a few days more without nutrition, as the outing itself will sicken me to the point I cannot immediately bear the added suffering of eating and drinking.

... I say I am fine. I do not mean "fine" as you perhaps define it. I mean that as a serious, excruciatingly painful, life-altering, daily chronic illness goes, this is not one of my absolute worst days, and I may actually survive it. Alternately, I may mean, "I know you do not really want the truth and are simply being polite, so I am going to do us both a favor and tell you what you wish to hear, even though I feel as if I may collapse at any second." My smile often masks my true emotions and symptoms and is intended only for your comfort.

... I speak of a medication, food, or therapy helping a bit. Perhaps one of my treatments brings my pain level down from a 9 to a 7 or means I experience nausea but no (or rare) vomiting. This does not mean I am suddenly able to function at 100% or that I am now fully participating in all normal, pre-diagnosis activities. Further, simply because a therapy helped today, that does not mean it will tomorrow, and, in fact, all "remedies" I have ever tried have eventually failed to improve my situation. Oh, and one more thing... when you ask me if I have tried "X," rest assured, I have.

... I write an essay, post a video clip, or join a Twitter chat. It means that, despite the struggle, I manage to show up and fight because I love this community dearly and NOTHING is more important to me than finding them (and me) a genuine cure.



Sunday, June 17, 2018


My husband has always been a loving father, one actively involved in our 14-year-old daughter’s care, but I am not sure we fully understood the implications of being a “good dad” until I was diagnosed with gastroparesis.  Some days, it seems my husband has, out of necessity, been called to be both mother and father, in a sense.  His life now consists of rising every day, performing the household chores I can no longer complete, taking care of our child’s many needs, acting as chauffeur, maid, butler, and general caretaker – all while holding down a job outside the home.  And though I am sure the pressure is sometimes intense, and he surely must feel the weight of his additional responsibilities, he has never once approached his expanded role as anything other than a privilege.

He is the kind of man who chooses to embrace rather than reject the hardships sent his way, and instead of seeking to lessen his load, he strives to find ways to accomplish more, to better assist and serve our family.  He is the kind of father who loves his child whole-heartedly, who teaches and guides, who models compassion and concern, and who would gladly sacrifice most anything to help our daughter reach her potential.  He puts the needs of our family, and especially our daughter, above his own and has sacrificed both career goals and personal pursuits in the interest of our household.

The nausea, pain, and fatigue which accompany my illness and which take not simply a physical but also mental and emotional toll, limit my engagement in activities outside the home and prevent me from completing household tasks and chores which once fell squarely on my shoulders.  The division of responsibilities, once nearly equal, has shifted heavily to my husband’s side since my diagnosis.  He is now tasked with toting my daughter back and forth to school, extracurricular events, and family gatherings, where he is almost always the sole attending parent. And when he arrives home at the end of the day, exhausted from his outside job, he cannot yet rest; his evening is filled with cleaning, homework assistance, and menial duties related to my medical care.  I hear him sometimes, late in the night, working on some unfinished project while my daughter and I lie snug in our beds, toiling to complete whatever assignment was left undone for lack of time.

He is a playmate and friend who spends countless hours losing board games, taking walks, and engaging in a good game of basketball, softball, or badminton with our child – all the things I once gladly joined but must now largely view from the sidelines.  He has become art critic, voice coach, speech teacher, wardrobe coordinator, chief trick-or-treater, birthday cake baker and party host, and teenage shopping-spree director.  He does his best to make up for my absence.

And on top of it all, he is often called to act as peacemaker and consoler.  When I am fatigued, overwhelmed with my symptoms, and not quite thinking or behaving rationally, he is the one who must calm me and comfort our daughter – shield her from the cruel effects of this illness (and my frustration) and assure her all will be well.  Many is the occasion I have heard him whisper to our child, “You have to try to understand and forgive Mommy.  She’s just tired and sick.  She doesn’t mean it.” He listens endlessly to my daughter’s complaints about homework, classmates, and the “unfairness” of life, though I know he must surely wish to tune it out, sit and relax, and escape his own troubles for just a moment, and he prays with her for my peace, strength, and healing and for mercy on us all.

He is the voice of reason, a calming presence, and a steady hand, the “glue” which keeps our family intact, and he exerts a never-wavering confidence that we can continue to get up every morning and do what is necessary to get through the day, whatever that may mean.  He pushes forward, onward, and pulls us with him, alongside.  He is teacher, counselor, caretaker, role-model, servant – and, above all, “Good Dad.”

Happy Father’s Day to my husband and to all dads called to serve in this challenging world of chronic illness.  Here’s to you!

Tuesday, March 6, 2018

The "Chin Up" Approach

I am a “suck it up” kind of person. I allow no excuses from myself and demand much. I am strong-willed, confident of my ability to survive and master difficult circumstances, and determined to persevere regardless of sometimes poor odds. I am educated, assertive, and capable of taking control over those aspects of my life which can be controlled. I am not helpless, hopeless, or weak. My outlook on life, though admittedly realistic, is, nevertheless, optimistic and positive overall. I am generally at peace, have a deep sense of purpose, and experience great joy despite the hardships in my life.

But I also have periods of doubt, sadness, and anguish, and because of this, I can appreciate human frailties, even in myself, and I accept them as a given. Further, I have profound compassion for those who find it difficult to see the light at the end of the tunnel, whose lives have taken unexpected and unwelcome turns, and whose outlook is less than sunny. Life is not a circus, and people do not spend their days in a perpetual state of bliss. They have times of great suffering, despair, and depression. This is normal, and, I would argue, not necessarily harmful but, rather, an essential part of the eventual healing process – confront and repair, so to speak.

Now, I must say, as one who views the world in this manner, I have currently had my fill of those who seem intent on making the struggling souls who surround me feel as if they are engaging in wrongdoing or somehow failing at life should they have a sorrowful thought, a not-so-rosy momentary perception of the world, fleeting feelings of grief and loss, or a brief sense of hopelessness. This “tyranny of positivity,” as it is named, the reign of which is heralded in some segments of society, particularly disturbs me when it pertains to my Gastroparesis community. As many in my community reflect upon their current circumstances, they find they sorely miss the things and people of the past. They face loss, regrets, disillusionment, unfulfilled dreams, broken promises, and shattered relationships. This all seems a part of life to me, and I view it as a cry for empathy rather than an admission of utter failure and a desperate plea for instruction from those enlightened few who feel the need to instruct others as to how to live.

Yet, all too often, when I see a pronouncement of hardship made by someone who has lost a loved one, is mourning her old life, or is lamenting the fact that she can no longer care for her home and family, maintain employment, complete her education, attend events and celebrations, or engage in other activities once a normal part of life, I likewise witness an array of responses which, rather than seeking to comfort this person, blithely dismiss the significance of her struggle, reprimand her approach, or attempt to nullify her very real concerns and emotions and usher in their personal vision of positivity to the circumstances at hand. (“Oh, honey, it is for the best,” “Well, at least you don’t have X disease,” “It doesn’t do any good to cry about it. Find the blessing in this,” “Chin up,” “What you should do is…,” and “If you would try harder to…,” come to mind.) Some may merely view this as encouragement, but it seems to me people are quite eager to offer unwelcome criticism and advice and not nearly willing enough to console a hurting, grieving human being.

Well, let me tell you plainly, from what I have been able to surmise, sometimes people do not need nor want your words of wisdom or your (perhaps) well-intentioned but ill-timed advice. They do not wish to hear what YOU would do or think they should do, and they do not desire diatribes about what is “healthy,” where they went wrong, or how their situation affects YOU and others. They do not need one more person pointing out their flaws, their shortcomings, or the error of their ways.

What they long for, what they require, instead, is your understanding and your compassion. They simply need you to sit with them quietly, wrap your arms around them, and let them feel, genuinely and passionately, the overwhelming sorrow and pain. They need a moment of self-pity, regret, guilt, shame, sadness, anger, or loathing of their circumstances. They need to “vent,” cry, wail, and rage without fear of condemnation and minus subtle indictments that they have somehow failed by not being “upbeat” enough. They ache for you to save the cheerful speeches and rally cries for a moment when they are not in such dire straits. They yearn to hear are sorry for all they have gone through and all they have lost. They want to know that although you may not be experiencing the same emotions, you genuinely understand and care that they have been touched by them – and that no matter how bad things get, you will be there for them, offering a nonjudgmental shoulder to cry on and a gentle, sympathetic touch.

They seek your acknowledgment, your confirmation, that what they have lost and now mourn holds significance and meaning – that the absence of such is, indeed, a great hardship. When one overlooks or downplays this sorrow, one essentially communicates that the circumstances or the people being grieved are not nearly as remarkable as those lamenting their loss believe them to be. And when one decides for others that it is time to let go, that there have been enough tears, or that “harmful” behaviors must now end, one minimizes the struggles of others and denies them the validation they require to adequately process their loss and move forward in meaningful ways.

These despairing, brokenhearted souls cry out in agony because they long to know someone, somewhere sees their tragic losses, the outrageous injustices they have endured, and the monumental effort it takes to overcome such adversities. They are not weak or senseless or incapable of optimistic thought and positive emotions; they are merely suffering and must grieve as it suits them and progress in the manner of their choosing. So, please, save the stern, accusing denunciations and the “buck up, rah-rah” speeches, and simply offer your open ears and hearts. The philosophizing, moralizing, reproach, instruction, and advice can wait for another, better day.