Wednesday, January 17, 2018

PATIENT-CENTERED CARE? WE CAN DO BETTER!

And yet again, I must write about a patient who has gone through needless agony and expense in an attempt to garner assistance from one of the "top" motility clinics in the country only to be denied the help she so desperately needs. In this particular case, she prepared exactly as instructed for a procedure for which she had waited for years and upon which she placed her final hopes. She researched, obtained the necessary approvals, spent all her savings, and traveled to this clinic multiple times in preparation for the procedure. But an important instruction was omitted from her preparation papers -- overlooked, missed by all involved -- and so she arrived at the clinic only to be told she could not undergo the procedure after all. A mistake -- most likely innocent, as that does happen whenever human beings are involved, but a devastating oversight for the patient.
And your response, Good Doctors? Not compassion or empathy. Not an offer to make things right free of charge. Not even an apology. No, you sent her packing, devoid of hope, out of options, and ready to give up on everything. Can she reschedule after making the changes she needs to make to undergo the procedure? Absolutely. But she cannot gather the necessary funds to return, and she is so emotionally damaged she does not know how to pick up the pieces.
Good Doctors, you simply MUST understand that patients spend months getting referrals, scraping together funds they cannot really afford to spare, and travel long distances to see you. Not only that, but they prepare emotionally. They are frightened, terrified that this procedure will not improve their condition, afraid to hope their symptoms might actually lessen, and yet hopeful against all odds that it will. They FULLY invest and view you as their salvation from the horrors of this cruel illness. Do you not see that the patient before you is begging for someone, anyone, to offer a kind word, a little compassion, a shred of decency?
Now, perhaps it is unfair to saddle you with the entire burden of "hopes and dreams," but it is absolutely appropriate to expect you to comprehend the physical, emotional, and financial burdens your patient bears. It is absolutely appropriate to expect you to behave like a decent, caring human being. And it is absolutely appropriate to expect that if you have made an error, you offer the patient before you a resolution which does not create additional burdens for her.
What you have offered instead, and what I see you offer time and time again, is apathy, a lackluster effort, callous and inhumane treatment, and a rejection of your oath, as I see it.
I say again: If you cannot do any better than this, CLOSE YOUR DOORS and at least spare my people the expense! And I can promise you, from now on, I am going to start advising people to DEMAND REFUNDS! Oh, I know this is radical and likely will not produce the immediate results I seek for these patients, but I can also promise you this...
If patients begin standing up and fighting this sort of atrocity and injustice, it WILL eventually turn the tables in our favor. And in the meantime, you will be forced to respond and deliver an adequate explanation as to why this sort of reparation cannot be made. Make no mistake: patients share information. Your reputation is not flawless and is plummeting quickly.
YOU SHOULD BE ASHAMED!


Wednesday, January 3, 2018

MUCH ADO ABOUT DOM

*Note: I am just a patient, a Gastroparesis patient searching for answers for a community which desperately needs attention, and this is just a copy of my Facebook post.  My apologies if the following seems harsh or overly-aggressive, but my people are suffering, and the status quo is simply not going to cut it.  Someone must speak out for radical change, and if not me, then who?  Please, if I am wrong, offer clarity.  Correct me and I will pass along the proper information.

One further comment -- a personal story really.  My former GI, a motility specialist, prescribed Domperidone and instructed me to obtain it through a pharmacy in Canada or New Zealand.  This physician actually handed me a prescription, along with printed information citing the pharmacies' contact information, and when I objected that this was not the technically legal path, a staff member responded to me: "What difference does it make.  Are you running for political office?"

Is that the atmosphere you had hoped to create?*

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MUCH ADO ABOUT DOM


How is it that our "top" Gastroparesis clinics and motility specialists do not know the proper route for prescribing Domperidone? Good doctors, if I can find the information, you can, too! 

When you advise patients to circumvent the legal process and purchase directly from overseas, you put your patients in the awkward position of choosing between following the FDA regulations or the advice of their doctor (who assumedly has their best interests at heart). Your patients trust that you are following the law and are directing them to legitimate sources of purchase -- and yet you are not. These people are stunned that they have been given misinformation by the very doctors whose advice they are expected to follow.

It would seem, good doctors, you are either uninformed of the FDA guidelines regarding Domperidone (which I find unlikely) or you are blatantly ignoring those guidelines either due to a desire to help your patients obtain the medication they need to survive through simpler (though illegal) routes or because you are unwilling to put forth the time and effort required to jump FDA hoops. I sympathize, but you must understand the consequences and the effect this has on your patients.

Your patients are often completely unaware that obtaining medications outside of the US is illegal and are shocked that you would advise them to pursue such a path. I frequently hear, "My doctor would not tell me to do something illegal. Why would he do that?" In fact, many times, your patients choose to put their faith in you and take your words as the final authority because they believe in you, and, after all, I am just an administrator in an online Gastroparesis support group. What do I know? And so they remain unaware that their medication may be confiscated at the border and that, if this should occur, they will be left without the medication they so desperately need, without an alternative source and adequate time to secure a replacement medication, and without any sort of refund for their purchase.

Beyond that, by breaking their trust in this one particular area, you have broken trust with them completely. How can you now convince them you are honest and upfront about other issues? Have you really researched the treatment option you are offering? Have you fully informed them of all the potential side effects and risks? Have you thought through the needs of your patient in all matter which so deeply affect their well-being? Why would they ever again believe you have told them the whole truth and are acting in their best interests?

I have addressed this Domperidone situation many times with the FDA. I have told them point-blank that people are confused as to why their doctors would give them misinformation and direct them to violate the law and that I am confused as to why this is allowed to continue. Their response to me, while sympathetic, has been that it is "disappointing" to hear that doctors are handing out such advice (and that they should not be) but that the FDA is not the body of enforcement. In other words, the FDA lays down the law but has little power in what happens after that. As I see it, the FDA has washed their hands of responsibility as have physicians.

Now, I do not like the FDA regulations. As a matter of fact, I detest them. But we have them. And if we are not going to do away with them anytime soon, then we need to find a way to help patients legally obtain their life-saving Domperidone. There is a process in place, and I am guessing most of the players (with the exception of patients) know the details of this process. Why are we playing games that ultimately harm the patient? While the powers that be "duke it out," my people suffer. Get on board with the process or change it.

And I say to you, good doctors, please stop placing your patients in a position where they must break the law to stay alive. It is UNACCEPTABLE! You know the proper route so advise your patients accordingly and put forth the necessary effort to help them obtain their medication. Cumbersome and time-consuming? Yes. But you have a duty to do what is best for those you serve. Take it up with the regulators, and, in the meantime, do what you must do to help your patients legally obtain Domperidone.

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For all who are interested, this is the post I generally share in the group. If I am the one who is misinformed, please, by all means, give me clarity...

Regarding DOMPERIDONE...

I am going to post the information (below) I post almost every time this medication comes up. I realize some of you dispute this. All I can tell you is that I have contacted the FDA 7 times now (yes, 7!), and this is what they have repeatedly told me. I have explained to them that I admin a group of more than 17,000 and, so, it is imperative I deliver accurate information, and they have assured me this is accurate.

I also realize doctors are not telling you this and are not prescribing in this manner. Again, all I can say is that, according to the FDA, they should be. It puts the patient in a very awkward position when the doctor is telling him/her one thing and an admin in a Facebook group somewhere is saying another. I have raised this issue with the FDA on numerous occasions, and their only response to me is that they are not responsible for oversight and execution but that doctors should NOT be operating in this manner.

Further, I know most of you obtain your Dom in ways other than the FDA's IND program. I make no attempt to direct your behavior; nor do I pass judgment on it. I clearly understand all the reasons for this. (In fact, personally, I detest the FDA regulations and fight every day for them to be changed.) But my goal is ALWAYS to provide the legal, most accurate, updated information possible, and so I post what I have been told to be correct by the very body which regulates all drugs in the US. And, in addition, I do not wish to see any group members in a situation where their medication has been confiscated and they have no recourse. I know many of you have ordered overseas (or from compounding pharmacies) for years with no issues, but I also know the FDA has begun cracking down on these practices rather severely lately. This can and HAS happened to members of this group.

If you doubt this information, I encourage you to see the FDA packet at https://www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/ApprovalApplications/InvestigationalNewDrugINDApplication/UCM520728.pdf or to call the FDA directly at 1-888-463-6332. I do not get paid to be their spokesperson, and I am certain they are tired of hearing from me.

So, here is the most up-to-date, accurate legal information I have. I will not engage in argument over this. You are free to believe as you wish. This is the best I can do. If you dispute it, please refrain from commenting; rather, please contact the FDA directly.

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According to the FDA, there is only one pharmacy (inside or outside the US) whereby patients may legally obtain Domperidone: Dougherty's Pharmacy in Dallas, Texas. You can find Dougherty's on the web at http://www.doughertys.com/ or reach them via telephone at (214) 373-5300. The FDA has stressed that this is the ONLY legal method for obtaining Domperidone available to US residents.

It is a common misconception (even among doctors) that Domperidone may legally be obtained outside the US, but this is not the case. US residents seeking to obtain Domperidone outside the US technically do so in violation of regulations and run the risk of having their Domperidone confiscated at the border. This can and has occurred. In this case, the patient does not receive his/her Domperidone, nor does s/he receive reimbursement for the order.

It is also a common misconception that Domperidone may be obtained through compound pharmacies in the US. Again, this is a violation of FDA regulations. Compounding pharmacies are prohibited from making and distributing Domperidone and do so at risk of being fined. The FDA fines these pharmacies and orders them to cease production/distribution once they have been made aware. Many patients have found that local compounding pharmacies which once filled/refilled their prescriptions for Domperidone have now been banned from this practice. When this happens, the patient is left with no recourse and no access to the medication.

Here is a link to the FDA's website regarding how to obtain Domperidone: https://www.fda.gov/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/ApprovalApplications/InvestigationalNewDrugINDApplication/ucm368736.htm

Their website instructs, in part, "'Patients 12 years of age and older with certain gastrointestinal (GI) conditions may be able to receive treatment with Domperidone through an expanded access investigational new drug application (IND). These conditions include gastroesophageal reflux disease with upper GI symptoms, gastroparesis, and chronic constipation. Patients who are eligible to receive Domperidone have generally failed standard therapies. Expanded access INDs facilitate access to investigational drugs (such as Domperidone) for patients with serious diseases or conditions for which there is no comparable or satisfactory alternative therapy to diagnose, monitor, or treat the patient’s disease or condition. In addition to other applicable requirements, an IND must be in effect prior to the importation, interstate shipment, and administration of Domperidone."

*Please note that we seek to provide you with the most accurate and up-to-date information possible, but we cannot and will not try to direct your behavior. Your choices are your own, and we make no attempt to control them. If you have any further questions, we would advise you to call the FDA directly at 1-888-463-6332.*


Monday, December 18, 2017

For My Loved Ones, I Wish...

I was looking over some websites for caregivers recently and came across a topic I found interesting.  The host was discussing how some make Christmas "wishes," and inquired: “What is your wish for those who care for you?”  Now, I am not certain how my husband and daughter would feel about being categorized as "caregivers" in any formal sense, but they do care for and about me, so I believe that qualifies.  And while I appreciate the never-failing support they offer me during my darkest days, I have never really attempted to spell out in any proper manner what I wish for them.  I spent quite a bit of time contemplating that this weekend, considering and evaluating what my hopes for them truly are, and though my list is no doubt incomplete, here are a few of my fondest wishes:

* Above all else, I wish for them to know and genuinely feel the love and appreciation I have for them.  I value them above all others, and despite my sometimes harsh words, raw emotions, unreasonable expectations and demands, and temper tantrums to the contrary, they have never once truly disappointed me in any noteworthy way.  They are the constants who add stability and meaning to my life, the ones I know I can count on regardless of circumstances, no matter how difficult my days.

* I wish for them to grasp how special, how exceptional, they are for finding the strength to withstand the cruel realities of this illness, to persist despite the horrors of Gastroparesis which affect everyone in my life, but them far more than any others.  They bear physical, emotional, financial, and spiritual burdens which directly flow from my diagnosis and which cannot be ignored but must be daily addressed.  They are meaningfully and significantly impacted by my poor state of health; yet, rather than abandon, neglect, or disregard me, they exert endless effort to include, forgive, and accommodate me, and they fully believe their lives are better off with my presence than without.  Many times and in many instances, they have sacrificed material possessions, leisure activities, luscious meals, free time, and emotional peace because their love for and commitment to me outweighs their focus on “self.” 

* I wish for them to live free from guilt and with a focus, if only for brief spells, on their own well-being and happiness rather than feeling as if their lives must always center around me and my wretched Gastroparesis.  My husband and daughter are both brave and kind for silently and patiently enduring the limitations placed upon me and upon them because of this disease.  And though I am the one who cannot eat, perform typical (yet energy-draining) household chores, run errands, attend events, or participate in any number of activities which used to be commonplace, they are impacted by this as well.  They do their best to hide and downplay it, but I see the guilt and sorrow which haunt them when they choose to engage without me in celebrations, family gatherings, and school happenings, or, on the other hand, when they forgo those events because they are needed at home or do not wish to leave me alone during the holidays or on other such occasions.  In truth, in my heart, and in spite of my sometimes selfishly voiced objections, it is my hope that they pursue the activities and endeavors which bring them joy, even if those pursuits do not include me.  They have lives, dreams, and goals of their own, and they have already forfeited so many of these for my benefit.  I want them to live the most “normal” lives possible without fear I will feel abandoned or excluded and without regret that they somehow “missed out” on opportunities. 

* I wish them peace in their hearts and contentment in their souls regardless of circumstances and outcomes.  Hardships abound, and my fate may not be the one we would all prefer, but they must be at peace with whatever occurs, as I am.  That sort of serenity comes from inside and from knowing there is something beyond our current state, a purpose for our existence, an ultimate plan for our being – and it is possible to rest in that knowledge.  It is difficult to endure adversity, and it is almost never welcome, but one can experience overall happiness and tranquility despite the trying days, and this is my hope for them.

* Lastly, I wish – hope beyond hope and dream beyond what is rational – that one day, we will all live free from the punishing effects of this illness, that there will be a cure, or a remission, or merely a more effective treatment, which allows my family to once again participate in long abandoned endeavors and which frees our lives from the burdens so cruelly imposed upon us.  And short of this, I wish for them joy in the times we have together and certainty of knowledge that I am grateful for each moment spent with them, even when I fail to express this. 

* To my husband and my daughter: What we have endured together has strengthened us, sealed our commitment, united us for eternity.  You are my one wish come true, all that I value and all that I love, happiness, contentment, fulfillment, and delight.  You have made my life worth living and, despite the hardships, the sorrows, and the ever-increasing difficulties, I would trade this life for no other.  


Tuesday, December 12, 2017

MANAGING THE FINANCIAL BURDEN OF THE HOLIDAYS


























The holiday season can be a financially challenging time for those who live with chronic illnesses.  Many of us are disabled, unemployed, and/or have high medical expenses and are financially strained under normal conditions, but especially so this time of the year. And though we would love to purchase goods and presents for all, we struggle to pay for our basic medical and living expenses and cannot afford to spend extra on things above and beyond the essentials for our survival. Oftentimes, our loved one extend gracious invitations indicating we are not obliged to pitch in for the meal or reciprocate gifts, but for many of us, this creates a sense of guilt and makes us feel as if we have not done our part or contributed in a meaningful manner.  How are we to cope?

Beyond relying on the understanding and compassion of our family members and friends, there are several steps we might take to minimize the pressure and guilt we feel and to participate in the festivities and gift-giving in meaningful ways.  I offer the following suggestions for your consideration:

* Let go of others’ expectations and refuse to feel obliged to participate in any activities or exchanges which stretch your finances beyond what you can bear.  There is no need to feel guilty for circumstances beyond your control, and protecting your financial well-being is an act of self-care which is borne out of necessity. It is perfectly appropriate to offer a polite refusal: “My apologies.  I am afraid I will not be able to exchange gifts this year.  It has been a rough spell for us financially.”

* If you choose to participate, refuse to exceed your budget no matter how small.  This may mean sacrificing the “ultimate” gift you had hoped to purchase or giving gifts to fewer people than you would like, but in the long-run, it will save you from being in a financial bind and allow you to avoid the additional stress when payments you cannot reasonably meet come due.

* Suggest family or groups of friends draw names for gift exchanges rather than buying for everyone in the circle.  This will allow you to spend a larger amount on one gift instead of divvying up limited funds among many.  Or perhaps “White Elephant” exchanges of used or “re-gifted” items would be a welcome option.

* Purchase small gifts throughout the year when you have additional funds available and set gifts aside until holiday time.  That way, the expense of gift-giving will be broken up over time and will not feel so overwhelming when the holidays arrive.

* This might be obvious, but shop for sales.  Many stores have fabulous deals on Black Friday (the day after Thanksgiving) and Cyber-Monday (an online version of Black Friday on the Monday after Thanksgiving).  Check clearance sales both in-store and online, as some are exclusive to one location.  For additional savings, look for free shipping offers and percent or dollar-off coupons in local newspapers and on store websites.

* If your goal is to purchase for everyone on a long list of recipients, and you cannot bear to omit anyone from the list, perhaps very inexpensive gifts are an option.  Thrift stores (such as “Good Will”), overstock and limited-stock stores, and discount retailers (such as “Dollar Tree,” “Dollar General,” and “Dollar Time”) offer low-cost goods and one-time deals which might suit your needs.

* If you have children and cannot afford presents, contact charities such as the Salvation Army, church groups, or clubs/organizations which operate assistance programs.  A good place to begin your search for relevant charities is with the United Way.  This organization can often direct you to local charities which might be of assistance.  Food pantries can also cut down on the cost of preparing meals.

* Consider gifting homemade goods, crafts, or foods.  If you have a talent, share it with those you love.  Baked goods, hand-made ornaments, crocheted scarves, paintings, poems written on fine paper, well-intentioned notes in a hand-made or virtual cards, and other such items are often welcome and appreciated for the skill and effort they require.  After all, such presents cannot be found at retail stores and can be personalized to fit the exact tastes of your recipient.  They are unique and from the heart.

Whatever choices you make, please remember that, ultimately, the holiday season is not about the material items we give or receive; rather, its true meaning is found in giving of ourselves, our time, and our companionship.  A precious moment spent with loved ones is an unmatched and priceless gift of joy.

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ADDITIONAL RESOURCES

Sunday, December 3, 2017

IN THE SHADOWS

























Death is a nearly tangible being to me, an ever-present dark figure who lurks in the shadows and creeps nearer to me daily.  He knows me intimately and follows my every move.  He is constant, ubiquitous, endlessly prowls the corners of my rooms and my mind.  He looms in the background of every celebration, each joyous event.  He haunts my waking moments as well as my sleep, refusing to grant me peace, and robs from me carefree moments and untroubled thoughts.

At times, he seems warm and welcoming – promises such solace and release.  He speaks delicately and sweetly and softens me with his offers of relief from my pain and my burdens.  He waves his hand and paints a picture of glorious liberation, which is both sweepingly beautiful and horrifyingly deceptive.  For though I welcome sweet escape, an end to this anguish, I am still conscious of my yet unfulfilled purpose, as I await my appointed time.  And though his lips drip with honey, I feel the sting his fate brings, know the sorrow of those who will be left behind when I finally meet my demise. 

Oh, yes, I have caught glimpses, insights, into the true nature of this Pale Rider who torments me.  He is neither a comforter nor a gentle soul; he is a beast and a torturer who seeks solely to destroy my body and soul. In truth, behind the tender fa├žade and beneath the splendid mask, he is a leering, sneering, mocking creature, a murderer and a thief who has stolen the lives of many before me – friends, loved ones, mere acquaintances – some who joined him willingly and some without choice.  Indeed, from my own shadowland, I have witnessed his spiteful taunts, am repulsed by his delight, his sense of triumph, his sheer revelry in the plight of those taken far too soon for my taste.  He relishes the misery and fear of those deaths – celebrates the alarm his cruel twist of fate, the seeming randomness and unfairness of it all, creates in the tattered beings he leaves in the wake of his destruction.

In an instant, if I listen with care, his beautiful whispers are revealed as cruel shrieks, punishing reminders that there is ultimately no escape, and that, in the end, the victory is always his.  He implores me to succumb.  Why delay?  My resistance merely spells prolonged suffering, agony beyond compare.  Perhaps my surrender would grant me serenity, tranquility, a measure of dignity I might not otherwise be spared, he coyly suggests.  But I recognize his lies, as there is no path to his realm which is not fraught with misery – if not for myself, then for the precious souls who pray for my continued presence here – be that only one more day.

No, though my tempter, my tormenter, speaks of the inescapable conclusion I must conclude, I know his true essence and will not be fooled or swayed by his lies.  My existence is marked by struggle and marred by grief.  My days are tarnished and impure, even the most blissful moments touched by sorrow as well.  It is true that I have been forever altered by this demon who overshadows my life, and I can never again be the carefree, untroubled soul I once was, but I will not succumb to his deception nor surrender to his false offering.  Victory and peace lie not in Death’s hands.  For I know where there is shadow there is light, though sometimes dim, and I have also glimpsed my true Redeemer, who has numbered my hairs, counted my days, preordained my path, and appointed my time – who has won the battle before it ever began.  And, so, I endure and hope beyond hope for brighter days.

Tuesday, November 21, 2017

A THANKSGIVING NOTE

I do not often publicly share the aspects of my background which truly haunt me because, although the person I am today has been shaped and influenced by those past experiences (in some beneficial and some not-so-beneficial ways), I largely believe I am who I choose to be now, regardless of history and circumstance. For many reasons, which I cannot always bring myself to discuss, the holiday season is and always has been my least favorite time of year. Nevertheless, I am thankful for all I have been given.

My life has changed in unimaginable ways over the past few years, and I sometimes barely recognize the creature who stares back at me in the mirror -- one so physically worn and beaten, yet emotionally and spiritually worlds ahead of where she began. You cannot possibly know the person I used to be or the torturous personal journey and difficult paths I have traveled to arrive at this place of relative peace and joy, as I cannot truly know yours. By the Grace of God only do I survive each day.

I am a strong-willed, independent, driven, opinionated, oftentimes stubborn soul, who rarely seeks comfort or direction, and, as such, I frequently fail to adequately express my gratitude to all of you who have taken the time and put forth the effort to genuinely understand and care for me despite my sadly-lacking virtues. I am overwhelmingly thankful for my friends and family who support and love me through even my worst and most unyielding times; for those in this community and in my groups who generously and freely offer kindness, gentleness, and unconditional understanding; for those who endure my rants and listen to my musings, and who read and share my words when the mood strikes; for those who feel my pain right along with me and see past the hurt and anger spoken in my lowest moments; and for all those who listen, hear, accept, welcome, and truly appreciate my differences, flaws, and shortcomings.

I never forget you, not even for a moment. You are my entire life, everything I value, and I love you with all my heart. Despite everything you may be facing, I wish you peace, offer you my deepest and most heartfelt appreciation, and hope you have the best Thanksgiving possible!  

Friday, November 3, 2017

WHEN THE MUSIC STOPPED

*Note: I hesitated to share this poem because it is a bit dark. It was written at a time when I was not feeling especially hopeful. I still have those days now and again. I think we all must experience them at times. But, in the end, I decided it does no one any good to plaster on a smile, pretend the dark thoughts never come, and act as if only rainbows and sunshine grace our paths.

I do not believe in denying the negatives or suppressing my feelings; rather, I seek to expose and work through them. I think it would be misleading and harmful to present a facade and to act as if there are no hardships associated with chronic illnesses such as Gastroparesis. The "tyranny of positivity" is real to me, and I think it less than helpful. I prefer to deal honestly and openly with issues (even dark thoughts) and help people address them. I am not a walking ray of sun, but I am determined, self-confident, and capable, and I am quite certain I can and will survive and thrive regardless of circumstances and that others can, too. That is the basis of true empowerment -- not to have ignored your fears but to have faced them and to have managed to move forward.

I am in a different frame of mind these days, a state of peace, acceptance, and hope -- but it has been and still is a struggle to remain there. Though I once believed the music had died, I see now that was false thinking. I promise you, the music still plays. But you must be willing to uncover your ears and bend to hear it. Albeit distant and, at times, unfamiliar, it plays.*



























WHEN THE MUSIC STOPPED

Roam these halls that music filled,
Empty now and hollow,
Chambers once so bright and gay,
Abound today with sorrow.

Long ago, sweet music played,
Wonderous familiar tunes,
Twirled and spun, my spirit free,
Laughter lit the room.

Danced and whirled the night away,
Light and unencumbered,
The beating of my heart kept pace,
Unaware those days were numbered.

Gloom and blackness nowhere near,
Thought the anthem would ever play,
The song untouched by grief and pain,
But, then, life got in the way.

All at once, the music changed,
Jarring – out of key,
The verses strange and unsettling,
The words unknown to me.

The notes began to rise and fall,
Disharmony louder and growing,
The crescendo reached its bitter peak,
With the discord overflowing.

A harsh cacophony of tribulations,
Pounded down my hallways,
Regret, remorse, trials, misfortune,
Marked the end of melodious days.

My mind confused, conflicted,
Piercing noise too much to bear,
The volume raucous, deafening,
Closed my eyes and covered my ears.

And then – the music stopped,
The clamor rang no more,
The din both brash and daunting,
Ceased its thunderous, roaring war.

No sound at all did reach me,
No whirling, twirling fests,
No beating joyful heart,
My dance steps out of step.

The song now dead and buried,
Dark and empty the rooms,
The ballroom full of sunshine,
Frozen – a lifeless tomb.

I long to hear the melodies,
Yearn for my soul to sing,
Even sad forgotten ballads,
What comfort they would bring.

At times, I catch a note or two,
A faint and far-off sound,
A haunting, calling, faded tune,
Wanting to be found.

Perhaps someday I’ll hear it clear,
And the concert will begin again,
The light and laughter and dancing,
Write the chorus and pen the refrain.

But this day it is merely fancy,
Lyrics hoped but yet unplayed,
A sorrowful, fleeting aria,
A verse adrift in better days.