Wednesday, August 2, 2017

GASTROPARESIS AWARENESS MONTH - AUGUST 2017



August is national Gastroparesis Awareness Month!  We encourage medical professionals, patient groups, and family and friends to help educate others about this life-altering chronic illness and its potentially devastating effects on patients and their loved ones.

Gastroparesis, or “paralysis of the stomach,” is a digestive motility disorder in which the stomach muscles fail to contract and move food from the stomach into the intestines at the proper rate.  Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles in preparation for further digestion in the intestines. This process is slowed in those afflicted with Gastroparesis, resulting in food being “stored” in the stomach for an abnormally long period of time.

This slowing of the stomach emptying process can cause debilitating and sometimes life-threatening symptoms, including stomach/abdominal pain, bloating, nausea, vomiting, heartburn/GERD, and early satiety and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, esophageal damage, blood sugar fluctuations, bezoars, and overwhelming fatigue.  

The National Institutes of Health (NIH) estimates that more than 5 million people live with Gastroparesis.  The most common known cause of this condition is Diabetes, which accounts for about one-third of the cases.  Other known causes of Gastroparesis include neurologic disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders, complications resulting from surgeries, various medications (such as some narcotics and antidepressants), and direct damage to the Vagus nerve.  Most cases of Gastroparesis, however, are labeled “idiopathic,” meaning that there is no known cause. 

Gastroparesis is most commonly diagnosed by the Gastric Emptying Study (GES), a procedure in which radioactive material (food) is traced by a scanner as it moves through one’s digestive tract.  Other methods of diagnosis include upper endoscopy, barium x-rays, gastric manometry, and (less commonly) the smart pill (which, when swallowed, transmits data regarding the rate of passage through the digestive tract).

As of now, there is no safe, reliable, and effective treatment for Gastroparesis – and there is no cure.   Available treatment options include often ineffective surgeries such as Gastric Electrical Stimulation (pacemakers) and pyloroplasty; medications which carry the risk of serious side effects such as Reglan (which comes with a “Black Box” warning from the FDA) and Domperidone (which has not been FDA approved); feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief. 

Living with Gastroparesis is challenging, both physically and mentally.  It is truly a life-altering diagnosis.  We seek awareness, better treatments, and, ultimately, a cure.

For additional information, please contact the International Foundation for Functional Gastrointestinal Disorders (IFFGD) at www.iffgd.org or the Association of Gastrointestinal Motility Disorders (AGMD) at www.agmd-gimotility.org.




Monday, June 12, 2017

WHAT PATIENTS WANT PHARMA TO KNOW


There was a time when “Big Pharma” was thought by many to be cold and impersonal, oblivious to patient need, and consumed by greed.  Though this belief lingers in some, the times are indeed changing.  In recent years, as patient demands to be more engaged in their own care have increased, major pharmaceutical companies have made genuine attempts to become more patient-centric and view patients as collaborators rather than merely consumers.  And they are making huge inroads.  Increasingly, “Big Pharma” is reaching out to patients in an honest attempt to meet their needs and include them in the design and decision-making processes.  In light of these recent efforts to engage patients, I thought it prudent to share a few insights into what patients want pharma to know.

To begin with, we would like you to understand we are not simply statistics.  We are not numbers on a page, “cases,” or sterile, unaffected participants in the process.  We are, above all else, human beings with hopes, dreams, and goals.  We have families, loved ones, and friends who count on us and with whom we wish to remain.  We long for acceptance and understanding, and we have a passion and desire to live full, healthy, normal lives.  But our debilitating illnesses deeply impact us and fill us with fear as to how our futures might be limited or cut short.  Indeed, they alter every aspect of our lives.  We need your help in regaining what our illnesses have so cruelly stolen from us.

We long for cures above all else, of course, but shy of that, we seek treatments which improve the quality of our lives – quality of life as we define it for ourselves and not as characterized and imposed upon us by detached observers.  We urge you to hear us and address the characteristics of our illnesses which matter most to us.  We need you to recognize the symptoms most significant in our lives and work toward alleviating those symptoms with treatments convenient to our lifestyles and befitting of our needs.  Further, we seek for us and our caregivers to be included in the drug development process from the very beginning so you might incorporate our wishes and our requirements wholly into your design.  Likewise, we desire the opportunity to provide feedback all along the way and to be empowered to drive modifications in the process when appropriate.  We also beseech you to acknowledge our treatment expectations and honestly address how realistic you believe these to be. We do not need false hope.

We wish you to know we are educated, knowledgeable, engaged in our own care, and willing to connect and share our experiences.  You need only reach out to us.  It is sometimes difficult for us to reveal personal information and discuss the most intimate details of our lives, but we are willing to do so with the promise of respect, some level of privacy, and the hope of better treatments.   We are likewise willing to participate in clinical trials but frequently have difficulty finding them and comprehending the sometimes lengthy and complex requirements for participation.  We have false assumptions about the nature of trials on occasion, fail to understand what costs and burdens we will bear, worry about travel demands and insurance issues, and fear what may happen to us if we abandon our current treatment, receive a placebo, or suffer harm from the test medication.   You can help alleviate our concerns by simplifying requirements, reducing our burdens, tailoring trials to our immediate needs (to the extent possible), assuring us of quality medical care throughout the process, emphasizing with our fears, and demonstrating compassion.  We need assistance in finding available trials and would be most grateful if you would provide us with full, upfront information about what trials entail as well as a summary of the results of said trials.  We wish to know our participation mattered and we wonder about the effectiveness of the drugs we so kindly tested.

Most of all, we seek constructive, quality engagement between patients and the pharmaceutical industry.  We value your willingness to include us in your endeavors and incorporate our input into your drug development processes.  We hope you know how meaningful your efforts in this area are. 

I conclude with my personal story so that you might know the agony which many of us endure and hold our stories in your hearts.  You have the power to touch and transform lives, and you are our best hope of regaining that which has been so cruelly wrenched from us.  We matter.  You matter.

***************************************************************************

LIFE FOREVER ALTERED

In February 2014, I spent a week in the hospital and was diagnosed with gastroparesis.  I am guessing most people have never heard of this; I know I had not, prior to being diagnosed.  Gastroparesis means “paralysis of the stomach” and is marked by debilitating symptoms such as nausea, vomiting, stomach and abdominal pain, reflux, early satiety, and severe bloating.

Since diagnosis, my life has been altered in ways I could not have imagined – overnight.  One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids.  I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness.  For the next few weeks, I was on a liquids-only diet and told that I would gradually work up to soft foods and solids.  Unfortunately, nothing like that has occurred.  I am now able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts. 

At first, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life.  But as time passed, I began to see how foolish that was.  Every single day, every second of every day, I think about food.  I see it, smell it, cook it, and feed it to my family; but I cannot have it.  I look in the mirror and see a skeleton.  I try to eat even small amounts of food, and I am in agony.  I am weak and fatigued to levels I did not think were possible.  Some mornings, I do not think I have enough energy to get out of bed.  I can barely concentrate and function enough to do everyday tasks.  And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs.  My 13-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out.  At times, it has frightened her so much that she has asked me to get “Life-Alert.”

I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions.  I worry that I will not get to see all the significant milestones to come.  I am not on the verge of death today (at least I do not think so), but when I look in the mirror, I realize that people like this do not have long lifespans, and it bothers me.  I worry about what will happen to my family when I am gone.  I fear my daughter’s reaction to my death and the consequences that might result from her growing up without a mother.  I want to be there for her when she is sick, scared, or needs advice.  I want to see her turn "Sweet Sixteen."  I want to hear about her first kiss.   I want to see her grow up, graduate, get married, and have children.  I want to know that she has a good career and a loving family.  I cannot bear thinking about the pain my death will cause my husband, and I am concerned that he might not be able to function when this occurs.  I want to grow old with him.  Facing the strong possibility that none of these things will occur is anguishing. 

I get frustrated because people do not understand how my life is affected by GP.  If you saw me on the street, you would likely not realize I am sick.  I do not look sick.  People frequently ask me if I am better now, and I cannot seem to convince them that I am never going to be “better,” not in the sense they mean.  I am constantly told I “just need to eat,” or that if I would try yogurt, natural herbs, or “get some more rest,” I would heal.  My own doctor labeled me as anorexic and advised my husband to “watch me.”  The lack of understanding is incredible, and though I know people mean well, it still bothers me.

I am angry because I am a control freak, and I do not like being a slave to this disease.  I do not like being “helped” with everyday tasks and always having to rely on others for aid.  I have screamed at, slapped, and pushed my husband away for simply trying to assist me.  I have thrown things (including food) across the room in fits of anger.  I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control.  Mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and I am still sick. 

There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die.  He does not – and I am thankful for that.  I think about others who have this disease who are much worse than I am.  I know many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes, surgeries, or other extreme measures for nutrition and relief from debilitating symptoms.  I sometimes look at them and think that this will surely be my future, too, and it scares me. 

I do not understand why I have this disease, and perhaps I never will, but what I do understand is that it is somehow important for me to share my experiences and let others know that despite my challenges, I mostly have a good attitude about my circumstances.  In fact, I believe I have been blessed because of my illness.  Since my initial diagnosis, I have become heavily involved with online gastroparesis support groups and have created and now administer an advocacy group that seeks to foster awareness and change for my community.  I feel connected and bonded to others in ways I would have never dreamed possible a few years ago. 

I have discovered a whole new purpose and meaning to my life.  Over the course of my journey, I have seen unimaginable suffering and need.  I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over these past few years.  I tell you, honestly, every person I know has helped me in some way.  They have visited, called, helped with chores and tasks, and simply cheered me up with their stories.  Please do not ever be convinced you can do nothing to help or that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present make all the difference in the world.  

Saturday, June 3, 2017

LEFT BEHIND

*Note: The following post is not meant as an indictment of men. Pronouns are chosen for convenience only and reflect the majority of cases I see in the groups.*


One of the issues I see quite frequently in our Gastroparesis support groups yet which remains a rather taboo subject outside our groups is spousal (substitute: partner, family, significant other if you wish) abandonment.  I realize many factors weigh into a divorce/separation and that it is perhaps not as easy as saying, “Stay with your spouse through thick and thin,” but the effects of such desertion on the chronically ill are devastating and desperately need to be addressed.

Many of those forsaken were married for years before being cast off.  They built a life centered on family and counted on their spouses for emotional support, physical comfort, and companionship.  They never held jobs, held low-paying jobs, or had to leave their jobs once illness hit.  Some delayed educational pursuits to care for their families and never got around to finishing their degrees.  Many agreed to stay home and raise children or work part-time on the promise that the spouse would continue to work and provide a family income.  Some turned down high-paying occupations and sacrificed their own ambitions to further their spouses’ career goals.  They were in what they thought to be committed relationships with common goals.  They established mutually agreed upon objectives meant to benefit the family as a whole.  Such commitments were, admittedly, made in the absence of illness, hardship, and crisis.  There was no plan for what-ifs.

Then, when illness struck, all their grand designs began to crumble.  Perhaps things continued on as before for a while – even a good long while – before one spouse decided he no longer wished to live his life “tied” to a sick partner.  After all, this was not what he “signed up for” and was no longer “fulfilling.”  There are all sorts of justifications for abandoning one's spouse: “She is not the same person I married.  She is always sick.  She can’t go anywhere and can’t take care of the kids or help with the chores like she used to.  I do everything.  We can’t even get romantic anymore.  Who wants to live like this?  Why should I be held to this marriage when she can’t hold up her end of the bargain?  Don’t I deserve happiness?  Don’t I deserve a decent life?” And so, one day, despite years of togetherness, tenderness, and shared dreams, the spouse walked out the door.

You may think me judgmental – may even side with the spouse who left – but I see the end result of this type of thinking, of this rejection and callousness, of this “me-first” attitude.  In our groups, we struggle to pick up and reassemble the pieces of those left behind.  The abandoned spouse is devastated emotionally and spiritually and questions whether she was ever really loved in the first place.  She wonders how someone she once thought devoted could so easily reject her, their family, all their beautiful dreams.  She cannot properly care for herself and her children, physically or financially, without spousal assistance.  And though perhaps once capable of pursuing a career (or an education), she cannot now find gainful employment due to her debilitating illness.  Worse still, she loses her insurance coverage once her husband leaves and cannot afford her necessary (and yet costly) medical care.

Yes, there are options… none ideal.  There are public assistance programs for housing but these often come with long waiting lists and the dwellings are sometimes located in less-than-desirable areas.  Disability might be a possibility, but it is frequently difficult to qualify and takes years to obtain approval.  There are also programs (such as SNAP and food pantries) designed to help with food costs, but many times, these do not cover all expenses incurred or items needed for care.   Medicaid may be an option for healthcare, but the approval process can take time and, even once in place, procedures and treatments can be delayed due to processing time.  It is often difficult to locate providers who accept this form of reimbursement as well. 

And, so, a downward spiral begins.  Mentally, emotionally, and physically drained from illness and abandonment, the affected spouse slowly loses all for which she worked so hard.  She is truly alone.  She has no emotional or physical support.  Her home is gone.  Her family is split.  Her medical care is non-existent or subpar.  Her condition begins to deteriorate due to the stress resulting from lack of assistance and care, and she finds herself in a dark abyss with little hope of climbing out unassisted.  This once optimistic, vibrant, dream-filled soul sees no bright future and abandons hope.

Now, I do not pretend to have the answers to this very real dilemma.  We live in a free society where marriage is an at-will contract and taxpayers reject ideas of further assistance to the “lesser” among us.  We have rights, and rightly so.  But as decent, caring human beings, I beg of you to consider the consequences of your choices, and I ask you: What happened to commitment, to devotion, to promises?  Where is your sense of responsibility for your fellow man?  Where is your compassion?  How can you so easily ignore the plight of those around you, perhaps people you once cared for deeply – loved, who have struggled to keep their heads above water and are now drowning in misery and hardship?  These people are in need and cannot succeed without you.  What do you owe these souls?  Much.  Much.  We are all connected, all intricate and valuable parts of this society, this world, and a similar fate could befall any one of you at any time.  Open your eyes.  Unbolt your hearts.  Extend your hands.  

Sunday, May 21, 2017

HUNGER

























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. 

Thursday, May 18, 2017

IS THERE ANYBODY OUT THERE?


















Some days my heart just aches over the incredible loneliness and isolation, the sense of abandonment, in our Gastroparesis community.  This is not the first time I have written about this subject, and perhaps the message seems old and tired to those outside of our GP world; nevertheless, I cannot help but address it.  It cries out to be heard as I scan the posts in the groups and in my feed.  The physical effects of this illness are devastating, but the emotional aspects are every bit as difficult to bear, if not more so.

Some truly have no family – perhaps they never married, bore no children, and their parents have long since passed; others technically have family members but no longer enjoy contact due to physical or emotional distance. Perhaps they have a family, but not one that sees, not one which seems to care. Once close friends have deserted these poor souls as well, unable to cope with the changes brought about by illness.  Our illness impacts every part of our lives.  It causes physical agony, often leaves us homebound, and generates anxiety and depression; it taxes us mentally and emotionally to the point where we view ourselves as burdens – too much effort required, too many sacrifices demanded from others.  How can we expect them to remain by our sides?

And so, the stories flow:

“I need to see my doctor, but there is no one to take me.  I can’t get to the store, either, and I am almost out of my medications.  I am too sick to drive myself and I don’t have the money to pay for a cab.  What am I going to do?”

“My house is a mess, but I am too tired to clean.  I can barely take a shower without passing out.  How can I possibly mop the floor?  I asked my sister if she could help me just this once, but she said she has her own life and her own problems – she can’t take on my responsibilities, too.  I know she can’t drop everything and come over, but could she, for once, try to see what I go through?  She’s my sister, but she acts like a stranger.  No one has time for me, not even my own family.”

“I used to love my job – and I was good at it, too.  But once I got sick, I had to give it up.  I thought I was close to my coworkers but not one so much as bothers to call me now.  I feel so worthless and lost.  I would give anything to be able to go back to work – be around people again.  I miss that.”

“No one invites me over anymore.  I guess I have had to cancel so many times that they just don’t think about me now.  Besides, I am no fun when I can go.  I mean, I can’t even eat, and I am too tired to stay long.  I don’t blame them.  Who wants to spend time with someone who doesn’t have the energy to join in the party?”

“He asked me out, but I had to turn him down.  I have been in a flare and the pain and nausea are really bad.  It’s not like I can go out to a restaurant and carry a vomit bag!  How am I ever going to find someone if I can’t even get out of the house?  I’m only 18 years old.  I should be out with my friends, not lying on the couch sick.  I am going to be alone forever.  Who would want to be with someone like me?” 

“My dad told me not to talk about my GP anymore.  He said if I would stop being so lazy, it might go away.  He told me he is tired of hearing about a disease I made up for attention.  He doesn’t get it.  Can’t he see how I am suffering?  I am wasting away in front of his eyes, and, yet, he refuses to see.  How can he be so cruel?  If he doesn’t understand, when he sees me every day, how will anyone else?  If he doesn’t care – and he is my father! – there is no hope for me.  No one will ever understand.  No one will ever care.”

“I asked my daughter if she could stop by for a few minutes this weekend, but she told me she is too busy.  I know she has her own family now, a job, friends – but I feel like she doesn’t know I exist.  I raised her.  I held her in my arms as a tiny baby.  I sat up with her so many nights when she was sick or crying over some boy.  I took care of her.  And now she couldn’t care less about what happens to me.  Did she ever love me?  Sometimes, I don’t know.  Am I asking too much to expect a visit every now and then?  I mean, I am her mother.  How can that not mean something?”

“I thought my husband cared, but then he told me he just couldn’t cope with the constant negativity anymore.  We stopped going out because I have been so sick, and I guess he grew tired of listening to me talk about how bad I feel. It hurts.  We were close once.  I thought he cared.  I thought he meant the vows we took.  I thought he would always be there for me, you know?  But he said he didn’t sign up for this.  He found someone else, someone who doesn’t have so many issues.  Is this all I have to look forward to?  Is this how things will be the rest of my life – alone, abandoned?”

“I can’t do this anymore.  I have no one.  No one.  Nobody listens and nobody cares.  What is the point of going on?  This is not living; it is existing.  Why can’t I just die and get it over with, end this suffering?  It’s not like anyone would notice I am gone.”

“I could die alone in this house and no one would ever know.  They don’t call.  They don’t come over.  They don’t even write.  I’m already dead to them.”

“I want to call someone – just talk for a while, hear someone’s voice.  But there is nobody.  I picked up the phone and realized… there is no one to call.  No one at all.”

“I am alone tonight, like every night.  I wish I had someone with me.  They wouldn’t even have to talk – just sit by me, hold my hand.  I get so tired of being by myself.  Sometimes weeks go by and I don’t hear from a single soul.  I want a hug.  I want someone to wipe my tears and tell me it will be okay.”

These stories break my heart.  How can they not?  My people feel abandoned and forgotten – and many are.  They need a cure, certainly, but more than that, they need human contact.  They long to find love but cannot imagine anyone being able to see past the pain, pick up the hardship, and commit to a relationship.  They need friends, lovers, companions.  They need to know someone cares, that their lives matter in the grand scheme of it all.  They need to be listened to and comforted.  They need a warm embrace, a gentle caress, and a soothing word.  They are empty and need to be filled.

Open your eyes and hearts to the need which surrounds you.  We do our best to support these solitary souls, but online groups cannot replace “real life” human interaction.  These people need you.  They need your presence.  They need to feel your touch, hear your tender words, to know someone, somewhere cares.  Remember them.  They seek only a moment of your time.  Is there anybody out there?  Anybody at all?

Saturday, May 13, 2017

ACCEPTANCE


“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 http://melissarvh.blogspot.com/2016/04/every-now-and-then-when-i-am-all-alone.html.  It is a bit more personal look at the struggle.  I hope it helps someone in some small way.*

Friday, May 12, 2017

CHRONIC ILLNESS: THE JOYS AND FEARS OF MOTHERHOOD




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 Today.com article, “Three generations of moms answer the question, 'What makes a good mother?'” (http://www.today.com/parents/mother-s-day-three-generations-what-makes-good-mom-t111328), 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.