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.



Monday, April 24, 2017

WHEN LIFE IS NOT A DREAM

























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

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

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

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

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

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

FLEETINGLY SWEET


FLEETINGLY SWEET

Fleetingly sweet our numbered days,
Swift and completely they fade,
Here but for a moment in time,
For only as long as we are graced.

Embrace the good as long as I am able,
Live with purpose and breathe with faith,
Treasure each moment as if it were my last,
The splendid ones are few, none to waste.

Why squander my hours living bitter and cold,
In turmoil, rage, loathing, and anger?
Why fritter my short-lived instants away,
In malice, spite, resentment, and rancor?

I endeavor instead to cling close to the joy,
Each new sunrise does so kindly offer,
Love and accept the glorious cracked vessels,
So wonderfully, caringly made by their Potter.

Brand vindictiveness rare and hatred unheard of,
In conflict and confrontation disengage,
Turn a blind eye but break open my heart,
To those souls who seek to madden and enrage.

For we all fall far short of perfection,
But hold our value, our worth, nonetheless,
Forgiveness, understanding, and gentleness,
Are the gifts which I offer and am blessed.

Friday, April 21, 2017

CHRONIC ILLNESS: IS KNOWLEDGE ENOUGH?

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

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

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

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

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

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