Sunday, May 21, 2017


A hunger lies within me,
A fathomless aching need,
Unaware from where it stems,
But I know I must feed the beast.

He is physical in nature,
Of that I am quite sure,
He requires bodily sustenance,
But claims – demands – far more.

He ravages my frail, broken body,
Punishes mind, heart, and soul,
He is a never-ending thirst,
A longing to be filled, made whole.

He’s both powerful and frightening,
Roars and thunders and storms,
But his motives are true and tender,
And, so, I find I am torn.

Do I detest this monster within me,
Or welcome his presence, not dread?
Can the poison which destroys my body,
Become my antidote instead?

He yearns for mercy and benevolence,
For those who share this plight,
And rages against injustice,
Battles it with all his might.

He cries out for aid and awareness,
Thirsts for understanding and grace,
Wars against apathy and indifference,
It is empathy and warmth he craves.

He is a brutal beast of burden,
Who carries the pain of the lost,
His passion and fire breathe knowledge,
But at such great personal cost.

For the beast, he wounds, in this struggle,
The pangs grip, torture, and twist,
As he aches for those who surround him,
Who seek more than to merely exist.

He craves to find an answer,
Deep longing for release and relief,
He is starving for treatments, a cure,
In a miracle, he still believes.

The creature, he mortally injures,
He damages to the inner core,
His unsatisfied longings ever-looming,
My heart cannot – but must – bear much more.

He has ranted, pleaded, and threatened,
Begged for someone to hear,
But his words and sincerest entreaties,
Too often have fallen on deaf ears.

He engulfs, overwhelms – swallows all,
But his intent is gentle and pure,
One must feel his cruel, monstrous sufferings,
To know, to show, to endure.

In the end, when he falls in hard battle,
When his struggle for good has finally ceased,
There can be but only one conclusion:
'Twas beauty which killed the beast. 

Saturday, May 13, 2017


“Acceptance” does not mean giving in to your illness, refusing to fight, or rejecting hope – at least, that is not what it means to me.  It simply means accepting your illness as a reality, acknowledging its existence and its very real effects and limitations upon your life.  It is conceding you cannot always control it and understanding your life has been altered, perhaps forever.  Moreover, it means making necessary adjustments, physically and mentally, so that you can move forward and not remain “stuck” in the past. 

I know this is not a simple process, and I understand there will be periods of mourning for all you have lost and continue to lose.  Those moments of grief might never completely disappear, but they can be minimized, pushed to the back of your mind.  Grieve – grieve until the tears stop flowing – grieve for all you have lost and for all the plans and goals you might (MIGHT) never achieve – but then pick yourself up and make a commitment to move on and find a new life, one filled with joy. 

What good does it do to mourn the past and neglect the present?  You cannot live your life with joy if you are constantly focused on loss.  And as long as you believe there is nothing left to live for, then, indeed, there will be nothing.  You must find the good in the here and now, no matter how small, and build on it.  You can set new goals and dream new dreams.  Make adjustments and control what you can, where you can, and when you can – and let the rest go.  Learn to accept yourself, with all your lovely imperfections, frailties, and limitations, and live fully in the present moment. 

Find the good, the beauty, and the wonder in your present reality.  Look hard, and you will see it.  You can be at peace under any circumstances, but you must be willing to give up false beliefs and allow the memories to become merely fond remembrances.  To do otherwise is to remain mired in a time that is long gone.

*Please also see  It is a bit more personal look at the struggle.  I hope it helps someone in some small way.*

Friday, May 12, 2017


As Mother’s Day fast approaches, I find myself reflecting on not only my mother but on my own role as a parent as well.  I live with a chronic illness, Gastroparesis, which leaves no aspect of my life untouched – and that includes my role as parent to my 13-year-old daughter, Lilly. Like many in my Gastroparesis community (and in the chronic illness community in general), I worry about how my illness affects my child and sometimes fear the limitations it imposes on her daily life disqualify me from being a “good” mother.  So, when I came across a article, “Three generations of moms answer the question, 'What makes a good mother?'” (, in which one mother declared the credentials for motherhood as, “Being there for your children no matter what means taking no sick days… the ability to do all things at all times, and the ability to never get sick,” I knew I must address this state of affairs.

I did not have a good relationship with my mother, and for a very long time, I hesitated to have my own child out of fear I would not be able to adequately parent her, properly meet her needs, or provide her with the nurturing so important to any child.  I feared I would be unable to love her, that we would never bond, and that I lacked the basic parenting skills to guide her to becoming an independent, confident, compassionate woman.  After much soul-searching, I eventually got past these fears, and for 10 years after the birth of my daughter, I was able to put them in the back of my mind and move on quite nicely with the business of parenting… But then came my diagnosis.

Suddenly, all the old worries reared their ugly heads – only amplified versions, heightened by my new physical limitations this time.  You see, I can no longer participate in most of the activities I once enjoyed with my daughter.  My illness causes severe pain, nausea, malnutrition, fatigue, and a whole host of other unpleasant symptoms which greatly impact my life and the lives of those around me.  I can rarely leave my house, at least not for extended periods of time, and my home life is limited by my lack of energy and burdensome symptoms as well.  I miss most of Lilly’s school events and extracurricular activities and am absent from nearly all family gatherings.  My husband must act as both father and mother at such affairs.  And even when I am with my daughter at home, our time together is tainted by my bouts of pain and fatigue.  Our neighborhood walks, visits to the local zoo, and shopping trips are largely nonexistent now, and my ever-looming illness taints all our interactions.  There is never a time when we are untouched by it. 

I am keenly aware of the disappointment in my daughter’s eyes each time I tell her I cannot attend her latest awards ceremony or hear her perform her choir solo in person.  I see her struggle to find answers to her homework problems, alone, when I am too tired to help.  I watch her through the window as she sits by herself in her backyard swing or shoots baskets solo because I am too ill to join her.  I witness her envy when her classmates and friends receive the latest technical gadgets and toys and when she sits at home while they enjoy lavish vacations we cannot provide because of our mounting medical bills and financial distress.  I watch her fret over my well-being and know the concern she feels when, as she consumes her dinner, I sip a protein drink.  I recognize her fight to hold her tongue and show respect when I am worn down and unjustly scolding her for no reason other than my own bad mood and misdirected anger.  I see the pain I cause my child.  I am not oblivious to these hardships, and I worry about both the short-term and long-term impact on her.  If the “good mother” bar is, indeed, “the ability to never get sick,” then I am failing miserably.

But the good news is that this is NOT the bar.  This is merely a healthy (and somewhat misguided) person’s version of good parenting – one which denies reality and leaves no room for frailty, mistakes, and shortcomings of any sort.  In my moments of sanity and clarity, when I contemplate the standards of good parenting and drive my nagging guilt to the furthest recesses of my mind, I understand that though we all fall far short of our goals and ideals, perfection is not a requirement of good parenting.  But genuine love, the desire to put forth effort, and the willingness to forgive, move forward, and try again are. 

There are difficult, long days when my child is largely ignored – but there are also small moments which define us and remind us we share a bond no illness can break.  We share corny jokes and tell over-the-top stories.  We watch the latest tearjerkers on home video and share our reviews of books we have enjoyed.  We sing with the bird and dance to “oldies” in the kitchen.  We laugh together when Dad “just doesn’t get it” and when she playfully teases him about his “outdated,” unrealistic expectations.  We have lengthy discussions about her newly-developed political and religious views and speculate about her future career and family life.  We sit together silently, lost in our own thoughts, happy to be in the same room.  I embrace her when a classmate mistreats her and brings her to tears, and she caresses my back when I am doubled over in pain.

I see clearly that my role as a mother is to instill in my child a sense of worth, a spirit of independence, an attitude of compassion, concern, and respect for the dignity and value of others, a desire to impact the world and all those around her in a positive way, and an ability to act with discernment in all matters of the heart, mind, and soul.  My daughter feels my love and tenderness.  She believes that despite my failures and shortcomings, I try my best, and it is not apathy or lack of desire which keep me from those events which fill her with pride and celebrate her many accomplishments.  She is aware that she means the world to me and that I would willingly sacrifice everything if it would further her happiness.  She knows I am there for her, offering support and forgiveness of her own flaws and errors in judgment.  She understands that people are imperfect, complex individuals who face all sorts of mental, physical, and spiritual challenges – and who sometimes fail, in spite of their best efforts.

I am ill, and I cannot always provide my child everything well parents can.  I certainly cannot guarantee her only healthy, perfect days.  But my daughter sees in me a mother who constantly endeavors to overcome daunting challenges and who strives to be the best parent and person she can be under the circumstances and within the bounds of her physical limitations.  Moreover, because her own life has been filled with adversities, Lilly has learned to face and combat the cruelties and injustices which abound in this world.  She knows the importance of persisting against formidable odds and of putting forth effort even after one has failed time and time again.  She knows determination and tenacity.  She empathizes with those in financial need, who lack even the most basic material necessities of life, and gives of herself and her possessions to those less fortunate.  She recognizes that every beautiful soul around us faces unique challenges and uncertain futures, often fraught with pain and anguish, and is able to demonstrate compassion because of the hardships and heartache she herself has endured.  She is a confident, compassionate, industrious, determined young lady with standards, morals, and values beyond reproach, who sets and accomplishes goals, and who desires to make the world a better place.  Isn’t that the goal of parenting?

I cannot give my child everything I desire or everything she desires – no one can – and I am okay with that.  My daughter is a better person BECAUSE of the lessons she has learned from coping with my illness and my shortcomings.  It has deepened our connections, our bond, and it highlights what is truly of value in this world: our relationships and our love for one another.  We cherish every precious moment together and find joy in the mundane.

I leave you with a story I wrote about Ms. Lilly awhile back.  I hope you find comfort in my words and in this anecdote:

I Feel Best When I am… Saving Worms?

My eleven-year-old daughter, Lilly, just formed a “Save the Worms Society” at her school.  She is beyond excited about this and fully believes this will be a world-wide organization someday.  In any case, it is big news in our house.  It is moments like these, watching my daughter, full of enthusiasm and hope, which make me feel as if anything is possible.

Please allow me to brag.  Lilly is a happy, healthy, beautiful child.  She excels in everything she does.  She has had the highest grades in her class every semester since she started school.  She has worked her way up through the ranks of her Tae Kwon Do class and is now a brown belt who is frequently called upon to lead the rest of her class.  She is artistic and has even won a few art contests with her drawings.  She is well-mannered, well-behaved, and in many ways, quite mature for her age.  All of this pleases me, but it is not what makes her special.

What sets Lilly apart from the crowd is that she has an unrivaled enthusiasm about her, and she uses her passion to try to make her world a better place.  The worm project is but one example of this.  You see, some children in her class were “picking on” the worms one day on the school playground.  It seems these little worm bullies did not have a good understanding of how worms would like to be treated.  These hoodlums handled the worms roughly, and Lilly feared for their safety.  She gave the children a good scolding and did her best to convince them that worms should be treated with respect and compassion, but she did not think this was enough.  What if other worms in other places had no one to protect and defend them?  So, she gathered together a small band of believers and started the “Save the Worms” society, complete with rules, regulations, standards of worm care, and a pledge to treat worms everywhere with the kindness they so richly deserve.  But she did not stop there.  Once she was home, she called a few friends at other schools to encourage them to start their own worm societies in their own schools.  She is 100% convinced that this will happen, too.

Perhaps I am blinded by my love for my child, but it seems to me that few eleven-year-olds would go to the trouble of creating a movement to secure the safety of these poor, unfortunate, misunderstood worms.  That is what makes her special.  That is what sets her apart.  She sees a need and she does not hesitate to believe that it can be taken care of.  She sees no barriers to her dreams, and her spirit soars with the hope that she can mold the world into what she wants it to be.  I know the world can be a cruel place, and many plans never reach fruition, but I hope she never loses her enthusiasm and determination to make a difference. 

On days I feel like all my efforts are for naught, I think especially hard about my Lilly and the joy she has for life.  I think about her love for all living creatures.  I think about her compassion and her will to do good works without any sense of discouragement.  She motivates me and makes me feel that I can take on the world, too.