Friday, February 16, 2018


I am likely breaking from much of the general population and from some in the chronic illness community with the following denunciation.  So be it.  I do not view the world in the same fashion as many others, and I make no apologies for that.  I do not feel the need to “fit in” or be accepted by those who ignore the plight of the lesser and care only about their own state of affairs.  I am my brother’s keeper – and that is a gift.

My issue today is with a doctor’s remark made to one of our gastroparesis support group members after she sought to discuss with him the recent deaths in our community.  When she expressed her concern and distress over the numerous passings, he coldly replied, “That is not your burden.”  Now, I am guessing his intention was to calm her, his misguided attempt to assist her in coping with “unnecessary” stress, but, nevertheless, his comment rings shallow and heartless and conveys a deep and troublesome belief that we hold no responsibility for anyone beyond ourselves.

Let us begin with the concrete and most obvious issue: The good doctor’s statement does nothing to address our group member’s real concern – which is her fear that she will someday be a candle on our memorial wall, too.  (Yes, the effects of this cruel illness can be life-threatening, and many of us wonder much the same.)  The good doctor clearly lacks insight into his patient’s psyche.  In addition, his remark ignores the impact of community on his patient.  In our support groups, we become connected, not merely as patients who share information about our illness, but also as individuals with unique interests, passions, skills, dreams, goals, personalities, and traits which attract us to each other as individuals and not simply “sufferers” of the same chronic illness.  In short, we become friends, and we care for each other sometimes as deeply as we do our “real life” family members.  Our connections run deep, and when there is a death, it is not the passing of a random stranger with our illness, it is the death of a companion whom we have grown to know and love.  Not quite as easy to ignore as the good doctor might first imagine. 

But I take further issue with his statement – “Not your burden.”  Then whose, Good Doctor? Who will claim responsibility for the ill, the struggling and dying, the less fortunate?  

Clearly, our deaths are not the “burden” of our government, which fails to pass health legislation granting us access to affordable quality care and denies us much-needed research funds, despite the lack of safe, reliable, and consistently effective treatments or a cure.  Our deaths are likewise not the “burden” of the policymakers who refuse to establish disability guidelines which recognize the serious life-altering and sometimes life-threatening nature of our illness and grant us a measure of financial stability, and who, through the misguided notion of FDA “protection,” ignore our right to make our own decisions regarding risk and quality of life and, instead, prohibit us from accessing treatments which could (perhaps) alter our fates for the better.  They are content to ignore our dying pleas.

Our deaths are not the “burden” of the far too many doctors who lack the knowledge and/or will to help us, who are too few in number and too far from our homes to provide regular care, for whom we must wait months on end to see, who are content to dismiss us as hypochondriacs or drug-seekers, and who push us out their doors because we are "too complex" and there is "nothing more" they can do.  Nor are our deaths the “burden” of emergency rooms where we are refused meaningful treatment, turned away, left in agony, directed back to the very physician who likely sent us to their establishment in the first place, and offered no relief, no hope, and no reasonable alternatives in the midst of our fear, crisis, and pain.  They are content to ignore our dying pleas.

 Neither are our deaths the “burden” of the pharmaceutical companies who price potentially life-saving treatments beyond our reach in the name of the almighty dollar and who hide the risks and ill-effects of their newly-developed, priced sky-high, profit-making drug. Nor are they the “burden” of the insurance companies who deny us those drugs and other treatments we know from personal experience will help with our symptoms, and who, despite profiting from excessively costly premiums, continue to place greater value on money-making than on human life.  They are content to ignore our dying pleas.

Our deaths are not the “burden” of mass media members, who have never heard of our illness or, at best, view it as a “little tummy trouble” and either deny us coverage or continue to disseminate incorrect information.  Though they can sometimes tolerate the chronically ill when we hide our skeletal frames and “negative” emotions and present only sexy, prettied-up versions of having overcome incredible odds to survive, they want no part of our messy stomach and bathroom issues, our tubes and scars, or our despair at facing starvation and ultimate death.  They are content to ignore our dying pleas.  

Sadly, our deaths are often not even the “burden” of our families and friends, who refuse to believe, accept, learn, understand, show compassion, or spread awareness of our illness, and who choose, instead, to mock, belittle, ignore, abandon, and abuse.  They are content to ignore our dying pleas.

So, again, I ask: Whose burden, Good Doctor?

I will answer for you: These deaths are MY “burden” – and I willingly, gladly, and passionately take up the cross.  My own comfort and my personal happiness are infinitely less important than the fate of those who face hardships and death, and my well-being is intimately connected to and dependent on the well-being of those around me.  And there are others (including the patient who sat before you and who you so blithely dismissed) who answer the call and bear this burden beside me, as well, because, you see, these deaths may be burdensome, but our fellow human beings are not.  They are precious, priceless souls, worth the effort, and deserving of a voice.  I can bear that responsibility, be that voice – and so can you – as politicians, policymakers, medical professionals, insurance and pharmaceutical executives, media members, family and friends, and fellow chronic illness survivors.  Do not be content to ignore the dying pleas.

No, my group member’s (my friend’s) response to the suffering and death around her was genuine, virtuous, and true.  While much of the world screams, “live for self,” I will tell you, “lose yourself.”  It is only through attending to others that we find meaning and purpose.  My “self-care” rests upon caring for others, and it is through serving I find ultimate happiness and peace, well-being.  I am responsible for the lesser among us – and so are you – all of you.  Despite what you have been told by the world, you must not continue to ignore the plight of the less fortunate who surround us and daily cry for our attention and assistance.  This life was not meant to be all about “self,” and we cannot flourish individually or as a civilization so long as our focus remains only on our own success, pleasure, and gain.  How have we so easily lost sight of that?

Good Doctor… You err.  Whose burden?  Mine, yours, ours.

Saturday, February 10, 2018

As the World Turns

I remember thinking the day my mother died (and for some time thereafter) it was somehow wrong that the world should keep turning, going about its business as if nothing of significance had occurred. It seemed unjust to me that the whole earth did not stop to acknowledge one of its glorious souls had passed. 

Now, as I witness friends in my community dying, one by one, I have much the same thoughts. People pass from among us, and yet we seemingly do not have the time or the sensibility, the compassion, to pause for a moment and reflect upon the unspeakable loss this world has just endured or dwell for an instant on all the unique gifts these beautiful beings bestowed upon humanity.

Death is a cruel thief who steals our loved ones away when we least expect it. We are unprepared, and our grief is amplified by the refusal of the world to allow us to catch our breath and regain our footing, by its cruel insistence on ceaselessly revolving.

I, for one, will never forget the precious souls who have walked among us and touched our lives in ways we might not fully recognize until after their passing. Please stand still for only a moment and feel the magnitude and gravity of such pure loss. It matters. We all matter.