WHEN LIFE IS NOT A DREAM

I am prompted by a post in one of our Gastroparesis support groups to share a story I might not normally share.  I have made a conscious decision to refuse to live in fear because of this cruel disease, but, unfortunately, I have little control over my dreams (and perhaps my subconscious mind).  So, last night, I found myself haunted by a nightmare in which I was left alone to care for myself and my young daughter after the passing of my husband.  I do not normally dwell on such matters, but I must admit, I was impacted by this more than I would like.

In the dream, I was completely unhinged.  I did not how to cope with my daughter’s feelings; nor did I have any idea how I would care for her.  As it stands today, I am rarely able to leave my home and cannot participate in most of her activities.  I am unable even to transport her to and from school.  I have trouble completing the simplest of household chores and could not possibly pursue employment.  I ran through our living arrangements and our financial situation in my mind and could see little hope.  It was frightening.

This morning, in the light of day, fully awake, I can examine this with a clearer mind – but, though I am calmer, the outcome is essentially the same.  I do not know how we would survive should this fate befall us.  It is senseless to worry about “what-ifs” and panic about scenarios which might not soon occur, of course, and I do not permit myself to take this path, but I still must ask myself how I should prepare for this. 

This is a scenario many in our groups do face – perhaps not death, per se, but coping alone, with no family members or friends to assist them.  I read their stories daily, as this is not rare.  This cruel disease robs us of our physical strength and endurance.  We are nutritionally deprived, weak, fatigued, and must bear a whole host of debilitating symptoms such as nausea, vomiting, and pain.  Managing this illness, even with the help of caring others, is problematic at best.  I can only imagine the added difficulties that come with surviving alone.  The physical hardships are many: lack of transportation (or simply the ability to drive) to medical appointments, stores, and social events; inability to adequately keep up with household chores; unemployment, underemployment, and lack of financial stability – generally accompanied by outstanding medical debt; and the inability to adequately care for their own medical needs – timely administration of medications, personal grooming routines, exercise, preparation of food, etc.  It is no doubt nightmarish.

But what seems to me worse still is the mental anguish these souls must endure.  The sheer loneliness and isolation many experience is beyond compare.  Though we do our best to provide for their social needs in our online support groups, we pale as a substitute for genuine human contact – an embrace, a gentle touch, a soothing word at the end of the day.  There is no one physically present to hold their hands and comfort them when they are weary and ill, receive disturbing news, or merely wish to celebrate and share a minor victory.  There is no face-to-face conversation, no one to sit by their side, no gentle smiles directed toward them, and no words of encouragement, love, and adoration. 

My heart breaks for these poor souls; I grieve for them as I do for those deceased.  I beg you to remember the unfortunate ones, the kind beings who would give most anything for a moment of your time.  The smallest of gestures on your part would mean the world to them.  Open your hearts and give of yourselves: call, text, write, transport, visit, donate your time and money.  Do anything – but not nothing.  These people matter and they are counting on you.  

FLEETINGLY SWEET

FLEETINGLY SWEET

Fleetingly sweet our numbered days,

Swift and completely they fade,

Here but for a moment in time,

For only as long as we are graced.

Embrace the good as long as I am able,

Live with purpose and breathe with faith,

Treasure each moment as if it were my last,

The splendid ones are few, none to waste.

Why squander my hours living bitter and cold,

In turmoil, rage, loathing, and anger?

Why fritter my short-lived instants away,

In malice, spite, resentment, and rancor?

I endeavor instead to cling close to the joy,

Each new sunrise does so kindly offer,

Love and accept the glorious cracked vessels,

So wonderfully, caringly made by their Potter.

Brand vindictiveness rare and hatred unheard of,

In conflict and confrontation disengage,

Turn a blind eye but break open my heart,

To those souls who seek to madden and enrage.

For we all fall far short of perfection,

But hold our value, our worth, nonetheless,

Forgiveness, understanding, and gentleness,

Are the gifts which I offer and am blessed.

CHRONIC ILLNESS: IS KNOWLEDGE ENOUGH?

Knowledge is not the same as understanding.  Knowledge is a mere accumulation of facts and data, while understanding requires a bit more.  It demands insight, sensitivity, and intimacy with any given situation – and, sometimes, it necessitates you have borne a particular burden.  I am convinced there is a basic lack of understanding regarding the effects chronic illnesses have on the lives of those afflicted.  But though I recognize this deficiency, I do not believe it must necessarily lead to discord and strife.  Please allow me to explain.

You may have knowledge of my illness; perhaps you can even define it, explain it, and list its symptoms.  But you have not lived with Gastroparesis nor felt its effects on your own life.  As one who is unafflicted, you cannot fully appreciate the agony, the mental and physical torment of this punishing disease.  You have not met the horror of being surrounded by a virtual cornucopia of foods, of savoring their tempting aromas, of longing to take just a bite, and of ultimately having to reject them.  You have not faced the fear of perhaps never again being able to delight in these tantalizing treats, nor have you desperately clung to the slowly fading memory of what it was once like to partake of them.  You have not experienced the overwhelming nausea which comes out of the blue and which, at times, tethers you to your couch – or the bathroom floor.  You have not endured the never-ending daily pain which cannot be tamed and which drives you to tears, confines you to your home, chains you to your heating pad, prevents you from sleeping, and haunts you as you lie in bed contemplating how you might face it again tomorrow.  You have not watched your body wither away, felt the energy drain from you with the slightest exertion, nor endured the bone-deep fatigue and weakness which weigh on both body and soul.

You may have knowledge of the available treatment options associated with my condition and be able to recommend the top physicians in the field, but you cannot comprehend the depths of the disillusionment and rejection which accompany failed medications and contemptuous, cold-hearted physicians.  You have not felt the condescending glare of the doctor who has accused you of imagining or inventing your symptoms in hopes of gaining sympathy, attention, or mind-altering medications, who has blamed you for the very existence of your illness, or who has admonished you for not trying hard enough to overcome its effects.  You have not spent your life savings, travelled cross-country, and held out hope that a certain new doctor will take your case and finally “see” your agony and alleviate your misery, only to experience the utter devastation of having your hopes dashed when this “tops in the field” doctor turns you away with a simple, “I’m sorry, but your case is too complex.” You have not anticipated healing and relief only to discover your “miracle” medicine comes with serious risks and harmful side effects or that, in reality, it simply has no effect on your symptoms at all. 

You may “know” what is best, endlessly reprimand me for my lack of “positivity,” and direct me to “fight through the pain,” but you are not the one who must look your child in the eyes and tell her yet again you will miss her latest performance, school activity, or birthday party.  You are not forced to deny your spouse a celebratory evening on the town or miss the family Christmas gathering because your body refuses to cooperate with the demands of such an outing.  You do not bear the burden of being unable to work or provide financially for your family, help with basic household chores and errands, or contribute in any productive way.  You do not ceaselessly relive the memories of earlier times when such tasks were easily performed and such activities were readily attended, nor do you live with the anguish surrounding all you have lost and all you can no longer accomplish.  You do not suffer the guilt of constantly disappointing others.

No, you may know of my illness, but you lack understanding on any meaningful level. 

Nevertheless, you need not wholly comprehend the full effects of my illness to offer your kindness and co-exist with me in peace and harmony.  I will settle for your knowledge alone if that knowledge is unaccompanied by judgment and reproach.  It is not necessary for you to intimately understand my deepest longings, aches, and needs, my fears and regrets, so long as you will simply offer support in the ways I desire and not in the ways you deem best.  You must merely recognize I am truly ill and doing the best I can to survive, to thrive, despite this cruel disease.  You need only sit by my side, present a listening ear, believe my struggles are genuine, offer comfort, respect my choices, acknowledge my efforts, forgive me my failings, and refrain from criticizing that which you do not – cannot – comprehend.  

A PATIENT (NOT SO SECRETLY) RESPONDS

I am disturbed by Dr. Brian C. Joondeph’s article, “8 Things Doctors Secretly Want to Tell Their Patients” (http://www.kevinmd.com/blog/2017/04/8-things-doctors-want-secretly-want-tell-patients.html). While I understand the good doctor/author wishes to share the physician perspective on the topics in question, it strikes me that this piece exudes a tone of near resentment toward patients – toward the “patient as center” philosophy.  At the very least, it does not scream “patient as partner” to me, nor does it seek to reconcile patient and physician.  It simply points out perceived patient misdeeds and makes no attempt to reflect upon the possible reasons behind patient “shortcomings.”

I understand the challenges physicians face, and it is not that I find fault with those who wish to discuss the physician condition under our current healthcare system; nor do I wish for my physicians to suffer.  I would like for my physicians to be happy, fulfilled, and well-compensated for the care they provide.  I have had mixed experiences with doctors, but most I have encountered have been dedicated professionals who have provided skilled care and have treated me with dignity and respect.  I sympathize with physicians who must tolerate long hours, overcrowded schedules, under-compensation, and less-than-reasonable patients.  But, out of necessity, if nothing else, healthcare must be centered on the patient, as it exists to serve his needs.  And in any case, we should not be at war, intentionally antagonizing each other and manufacturing tension and drama.  Should there not be attempts at mutual understanding?

To this end, let’s begin with the physician’s points, and address them one by one from the patient’s perspective… 

1. “I’m worried about health care reform, too.” – Though you state that you appreciate the challenges patients face under the ACA (or any other healthcare program), I am not certain you actually do.  Your worries center around your financial concerns and the possible closure of your practice, but mine revolve around my health, my very life.  My finances are already in ruin because I am too ill to work, and my medical bills continue to mount.  I am barely getting by as it is, and if I have no (or very limited) access to affordable care, I will die.  You will simply lose your business.

2. “If you’ll be late or need to cancel your appointment, please let me know.” – This seems reasonable, and I will do my best; however, I expect the same courtesy in return.   If you are running late or will be rushing through my appointment in an attempt to “make up time,” please let me know so that I have the option of canceling.  My time is valuable, too, and I have likely gone through a lot of trouble to get to your office in my sick and weakened state.  Lengthy waiting room times, when one is vomiting, feverish, and one the verge of collapse, do not help the situation.  And please think twice about canceling my appointment at the last possible moment.  I do not appreciate prepping for a colonoscopy only to be told a couple of hours prior to the procedure that the doctor is “running behind” so we simply must reschedule.  Please understand, also, that, like you, I am not always able to give 24-hour notice of cancellation.  My life is chaotic.  I may awaken to a sick child, a car which decides not to run today, or any other number of unexpected and unplanned catastrophes.  Life is not always perfectly predictable.  Oh, and I receive no compensation when you cancel.

3. “You really need to… [fill in the blank]” – Yes, I am probably already well-aware that I need to… [X].  Now, I realize that you feel it is medically appropriate to tell me what is already very clear to me, but it is not necessary to do so in a condescending, hateful manner.  Often, it is the tone which is the issue and not the statement itself which I find offensive.  Believe me, there is a difference in saying, “You might really consider dropping a few pounds” and “You are fat!”  And in any case, your “edicts” are, in truth, merely recommendations to me, and I may very well see things differently based upon which quality of life aspects I wish to emphasize and which goals upon which I choose to focus.  You do not have the right to make unilateral decisions for me.  And one final point: not all of my health issues can be attributed to unhealthy lifestyle choices.  Sometimes, through no fault of their own, even when they have done everything right, people get sick.  They get infections, viruses, and diseases which were not caused by living a sedentary lifestyle or eating too much junk food. 

4. “Think before you call us.” – Well, the next time I am vomiting non-stop and scared out of my wits by the pain, I will try to consider how this might disrupt your evening.  That middle of the night call you hate receiving?  Got news for you: I hate making it, and if I were taken more seriously by ERs and physicians alike, I likely would not be taking this approach.  (Please see “Whatever Happened to Good Old-Fashioned Outrage” at http://melissarvh.blogspot.com/2017/02/whatever-happened-to-good-old-fashioned.html.)  And while we are at it, I would greatly appreciate it if you would think TO call me.  I deserve timely notice regarding lab results over which I have been wringing my hands with worry.  A follow-up call to check my status after a major procedure and reminder calls regarding upcoming appointments would be nice as well.

5. “Be polite to my staff.” – Politeness should always be the goal, of course, and that should go both ways.  Please also inform your staff not to take their frustrations out on ME.  Yes, that happens!  Eye contact, smiles, a simple “please” and “thank you” and an apology for long wait times would be most appreciated.  Please remind them I am a unique individual and not a number, and that though they might have asked the same set of questions to a hundred other patients, they have not asked those questions to me.  So, please forgive me and exercise just an ounce of patience should I ask for clarification or elaboration.

6. “I can’t always run on time.” – Nor can your patients.  Please do not assume I am not concerned about getting to appointments.  Many times, I have waited weeks, even months, to get in to see you.  I do not take that lightly.  So, if I am a few minutes late, it is not because I set out to ruin your schedule; rather, I was likely interrupted and delayed by one of life’s unexpected situations.

7. “Saying ‘thank you’ goes a long way.” – As mentioned above, it most certainly does, as does your kindness toward patients.  We all wish to feel appreciated.  Without me, you would not have a job, so please address me as a valued individual client.  I would love to hear how grateful you are for your loyal patients, like me.

8. “I’m only human.” – As are your patients.  As a matter of fact, we are sick humans.  I cannot always be at the “top of my game” when I do not feel well.   I am weak and struggling, sometimes in a fog, and, try as I might, I do not always put my “best foot forward.”  Neither do I welcome your criticism and judgment for my transgressions.  I am not apathetic or generally unkind; you see me at my worst.  I am doing the best I can, given the circumstances.  My apologies for the times I am less than perfect regarding the social graces.

In addition to the responses above, I beg you to please consider the following subjects we, as patients, would (maybe not so) secretly like our physicians to know as well:

1. I am frightened and unsure. – I have just been diagnosed with a disease or condition about which I know nothing – not the cause, the possible treatments, or my prognosis.  I have no idea how this will alter my life, and I am terrified to hear the answer.  In fact, I know so little about my condition I can barely formulate basic questions for you.  I fear you will mock me or that you will not believe me.  I fear you will not take my concerns seriously or will not focus on the aspects of my care which are important to me.  I fear my condition will worsen.  I fear I will die.

2. I am overwhelmed physically and emotionally. – In addition to my fears about our upcoming visit, I am coping with the very real daily negative physical effects of my illness and the stress related to it.  How can I cope with these symptoms for the rest of my life?  How will I work like this?  How will we pay our bills?  Will I be a burden to my family?  Will I survive to see my child grow up?  These matters weigh heavily on my mind, and I am drowning in worry.   

3. I am not stupid. – It may take some time for me to adjust and learn, but I am perfectly capable of understanding complex material and processes when I am comfortable with the language and terms and am given proper information.  I can make informed choices and wish to be presented with all my options as well as the potential risks and benefits.  I welcome your educated recommendations, but it is ultimately my life, and these are my choices.  Furthermore, rather than admonishing me to “stay off the Internet,” you should be encouraging me to do additional research regarding my condition and its possible treatments.  I need to understand what I am up against, and I cannot always trust that my physicians have the latest or best data about my condition, especially if it is rare.  Please welcome my suggestions and engage me in reasonable discussion as to whether the questions I raise are sensible concerns and the treatments I present are viable options.

4. I can handle the truth. – Please do not hide information from me.  I want and expect the whole truth about my condition.  Yes, I might be upset, but once I have a chance to process the information and evaluate my options, I will be just fine.  You do not need to hint around, speak with my family as if I am not in the room, or downplay the nature of my condition.  In addition, please do not attempt to define for me the seriousness of my illness; I will decide that all on my own.  That is not up to you to determine because your life is not the one impacted by this illness.

5. I wish to be believed and treated with respect. – I should not need to “prove” I am experiencing the symptoms I report to you.  If I am in your office, it is a pretty safe bet that I am, indeed, struggling.  When you smirk, seem uninterested, or dismiss my symptoms without further evaluation or discussion, it is difficult for me to believe I am being heard.  Further, please do not assume that because only a small percentage of the population is afflicted with a certain condition about which I am concerned, I could not be in that small percentage.  My fears may be justified.  And, finally, please do not tell me, “I wouldn’t worry about [X].”  You wouldn’t, but I do.  Explain to me why you do not believe I need further examination or evaluation. 

6. You are not seeing me at my best. – You are most likely seeing me at my worst.  I am weak and ill, and your personal situation and feelings are not my chief focus.  I am normally a very nice person, but these are difficult times.  Yes, you deserve to be treated well, and I should be polite under all circumstances, but I sometimes neglect the social graces when I am on the verge of a breakdown and in the middle of a health crisis.  Forgive me my failings and please do not reciprocate.

7. I don’t want to be here. – I am not inventing symptoms because I seek attention or have an unmet psychological need.  I am not an addict seeking drugs for a “fix.” I am not lonely or in need of your company.  I do not wish to waste your time or my money.  I am in the midst of a genuine medical predicament and could use your help rather than your accusations and scorn. 

With a little bit of effort and adjustment in perspective by both parties, many of these issues could be resolved.  Physicians and patients should not be at war.  We share many goals, and we are trapped in the same faulty healthcare system.  Can we not find a way to understand each other? 

THE ROAD TO SUCCESS: AN ADVOCACY STORY

A post by Ms. Marsha Wright (www.iLoveMyFans.io) reminded me of this quote by Mr. Robert Collier, a successful self-help author: "Success is the sum of small efforts, repeated day in and day out."

I believe this is true in terms of advocacy. Some seek to be heroes, to lead some sort of one-man charge in the advocacy world; some seek celebrity endorsements as a solution to all our woes; some search for that one big campaign that will lead us all out of the darkness. In contrast, others refrain from participating in advocacy efforts because they feel their efforts are somehow less important or significant that what they view as the "major" players.

In truth, though advances in awareness are, at times, made through giant leaps, most progress is made gradually, incrementally, over time. And it is not those who seek self-glorification, fame, praise, or positions of leadership who lead. It is those in the trenches, fighting small battles and sharing small victories who usher in real change. It is not the generals who achieve victory; it is a joint effort by all involved.

Awareness is about our illness -- about finding solutions to the struggles we face. It is not about any one individual or campaign. It is larger than you and me, more significant than any group or campaign, and is led by the sum of us. Everyone here is equally important. YOUR success is MY success, and vice-versa. It cannot be any other way if we are to survive this cruel illness. Celebrate the successes of others -- for they are ultimately your successes as well!