FROM THE OUTSIDE LOOKING IN

To you on the outside looking in,
Whose baseless judgment knows no end,
Who pretend to know enough to comprehend
Our pain and suffering, the depths to which we’ve been,
 
You who shake your heads at our great disgrace,
You with lashing tongues that diminish and abase,
From your lofty, healthy, pristine place,
Spout venom dressed up in trite cliches.
 
“A thing to behold, a blessing in disguise,”
So preach the saintly, the philosophers, and the wise,
As if our cruel illness could have an upside,
As if we’ve been granted some “soul-perfecting” prize.
 
You wield your “positivity” as if it’s a club,
“Chin up! Don’t you know you must overcome?”
No compassion, no mercy, no warmth, and no love,
Bludgeon my poor spirit till it grows cold and numb.
 
But when you’re the one who is trapped deep inside,
Inhabiting the world of the forgotten and cast aside,
Where from your brutal fate there is nowhere to hide,
Where your agony and misery cannot be denied,
 
The view appears somewhat different to you,
Murkier, muddier, and harder to see through,
Not the land of the living the others cling to,
The luscious world of wonder that you once knew.
 
We reach for a hand that might lift us up,
For an extended invitation to the joyous world above,
But rather than sweet grace, you offer only rebuff,
No matter our efforts, we are never good enough.
 
Ms. Sunshine, Mr. Righteous, I implore you to see
That your patronizing speeches and harsh enquiries
Serve only to punish, belittle, and demean;
They do nothing to cheer, inspire, or set free.
 
For we live in darkness, and every day is a chore,
Our spirits are dampened, and our bodies are at war.
We can’t readily accomplish what we were able to before,
Takes more time and great effort to replenish and restore.
 
What you see as simple and command that we do,
Is much harder for us, though we try to push through.
We are weak and depleted, gone the strength we once knew,
And every day as we waken, we start the battle anew,
 
We fight to move forward through tribulations and trials,
As survival consumes us and our lives pass us by,
We search to find meaning, know our lives are worthwhile,
It’s not as easy as it sounds to greet this all with a smile.
 
We daily face hardships you will never understand,
And must live within the limits our illnesses demand,
So, your calls to “greatness” and “helpful” reprimands,
Mean little, as we’re already doing the best that we can.
 
If you truly wish to help us, then bend down on your knees,
Pray for our healing, our comfort, our relief,
Acknowledge our struggles and offer blessings and peace,
Live among us, walk beside us, see our hearts, share our grief.
 
The barrier between us that wounds and divides,
Must fall away, and you must come inside.
Come down from the mountain, set your judgments aside,
Lovingly embrace us and try to see us through our eyes.
 
Your wagging tongues you must silence and control,
For you are called to comfort and not just to scold.
Inside, we need understanding and warm hands to hold,
Gentle spirits that nurture, loving arms that enfold.

"Coping" with the Pain

This morning, I was thinking about (and fuming over) an article I read a few years ago in which a physician commented that we are a society lacking coping skills, a people seeking "quick fixes" for our pain, one that needs to acknowledge that "suffering is part of life." He was lamenting the fact that patients came to him seeking pain-relieving medications (opioids, to be precise). His tone was mocking, condescending, and completely void of empathy or compassion, and I immediately thought to myself, "I wonder how he would feel if he lived with Gastroparesis for a spell?"

Now, I would wish this illness on no one, of course, but I am guessing the good doctor has never experienced the sort of chronic pain that I and so many in our Gastroparesis community daily endure. Perhaps I should grace him with the details...

My pain is overwhelming, send-me-to-my-knees, curl-up-in-a-ball, beg-for-mercy suffering for which no level of coping skills can prepare one. It is daily, ever-present, a physical and mental torture that confines me to my home, tethers me to a heating pad, stains my cheeks with tears, and transforms me into a raging, agonized beast who would give almost anything to rid herself of it.

It impedes sleep, and when (if) rest finally comes, it awakens me again in the nighttime. It haunts and taunts me with the knowledge that no matter how well I battled it today, it will be back again the next morning for another round -- perhaps stronger than the day before. Mentally, emotionally, and physically, it alters my being, changes who I am, and wears on me until I believe I can bear no more. And, yet, I must. I have no choice. It comes. I cannot will it away, wish it away, or pray it away. At best, I can lessen it to the point where I can function in some minimal fashion, but it will not be ignored nor placed on a back-burner. And it does not end. Ever.

So I take issue, O Wise Healer, with your suggestion that I have no coping skills and seek, instead, a "quick fix" to all of life's problems. Suffering is, indeed, a part of life, but I would wager that my suffering and that of many in my GP and chronic pain communities is nothing akin to what you have experienced. And after more than nine years of this torturous life, I am well aware there is no simple solution, no easy, consequence-free choice. But would a moment of relief, one serene, carefree, beautiful, blissful moment free from this pain be too much to ask, to expect? You hold the power to provide that, and yet you chastise us for desiring it.

I should probably clarify that I do not now, nor have I ever, used opioids. That's right, I have chosen to endure the "discomfort," as the article's author so blithely labels my suffering. But I do not make this choice lightly, and there are many days I yearn to take a different path. Many in my community do take that road. They turn to opioids (or other pain medications) because, without them, there simply is no quality of life. They cannot function in the most basic ways. They desire some small measure of comfort in a world of chronic illness where there is little.

Good Doctor, you think yourself so wise and strong because you have been blessed with a nearly pain-free, healthy existence. But take a moment to consider the "lessers" before you pass your profound judgment upon us, and, perhaps, view us from an alternate perspective -- one of compassion and empathy, free from judgment and assumptions about our motives and our abilities to "cope." We know a struggle few will ever experience.

Should we not have a voice in our care, in the path we walk? Patients are disregarded, ignored, imprisoned by pain, devoid of options... and this is unforgivable.

No, Good Doctor, I do not need any further instruction on how to endure pain. I am a trooper, a master of "overcoming," who is quite capable of "coping with" and "managing" pain; I am simply tired of having to do it! I want relief, an end to this madness. I want a cure.

Why is that so difficult to understand?

NORMAL

What is normal?
Yours or mine?
Crossed the boundary,
Never saw the warning sign.

To a world of madness,
That fluid fine line,
Now etched in permanence,
No exit to find.

Seizes your indulgences,
And all you hold dear,
From dawn into night,
Fraught with anger and fear.

Dreams and ambitions?
You won’t find them here.
Just crushing, dull numbness,
Behind the decorative veneer.

“New normal” they declare,
As if that’s something to behold,
But the memories, the good times…
I prefer the old.

They have no real answers,
But might keep you alive,
You might languish and struggle,
But don’t expect to thrive.

They have Band-Aids and tubes,
A whole chest of survive,
But the full life, the whole,
Cannot be revived.

Reduced to a photo,
A face on a screen,
Neither dead nor living,
But somewhere in between.

Well, that just won’t cut it,
This side of the line,
No thank you to compromise,
I want back my life!