CLOSE THE DOOR

Flee from all the voices,

Find a nice, safe, warm place,

Into the inner sanctuary,

Make sure to bar the gate.

Slam the door closed,

And draw all the shades,

Sink deep into my chair,

Close my eyes, accept my fate.

It is peaceful in my sanctum,

Or so it would seem,

Not a tortured soul around,

Though they still haunt my dreams.

No pressure, strain, or pleading,

But this is less than fulfilling,

My mind grows numb, closes,

My soul this is killing.

Focus solely on self,

As I am told it is the goal,

But it feels not quite right,

And this takes a steep toll.

For I still hear the wailing,

Anguished pleas of the dying,

Hands over my ears,

But it will not stop the crying.

At the gate, they beseech me,

“Let me in, meet my needs.”

Someone must help them,

But must it be me?

Hold tight to my old life,

Where all was in order,

Clear goals and bright future,

With no frailties was I bothered.

I long for what I once had,

Soft and pain-free existence,

Want to shut out the madness,

But it seems useless, this resistance.

Closing the door on this calling,

Once felt secure, a good decision,

But the truth crashes down,

Not a haven – but a prison.

Locked myself in tightly,

And thereby sealed my fate,

What once seemed so wise,

Is revealed as a grave mistake.

No one can enter in,

But neither can I escape,

Must loosen these chains,

My cruel destiny reshape.

These people, how they need me,

There is no one else,

No white knight to save them,

Must abandon thoughts of self.

But just outside the door,

There is pain beyond measure.

Can I face it, endure it,

This storm I must weather?

Close the door on my old life

And leave it all behind?

Will it be there should I want it?

Questions race through my mind.

Cracked the door in the past,

Peered into the darkness,

Ventured a few footsteps,

But, oh, the vast hardships!

The path I must take,

Leading out to the masses,

Is fraught with great sacrifice,

Past trials it surpasses.

In the end, it is clear,

Cannot ignore my purpose,

Must pass over the threshold,

Keep my fears below the surface.

This new life, it frightens me,

Must cast-off all I once knew,

It will be filled with ample burden,

But, no doubt, with joy and beauty, too.

My body does fail me,

But my soul, free it flies,

Once I unbar the gate,

Through the door – fear subsides.

My new life awaits me,

Must embrace it, now I’m sure,

My old life leads to death,

So, I close the door.

Close the door on my past,

Leave my old life behind,

No final glances or regrets,

My harrowed soul no longer blind.

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

*Note - I wrote this for my Gastroparesis community/groups and share it here as an explanation of the above writing.  My community means the world to me, and I am grateful for all the blessings I have been given:

I never make New Year's resolutions, but I do generally take a look back at the year and evaluate where I have been and where I want to go. It has been a rough year. We have lost so many to this cruel disease, and, of course, we still have no cure. But I believe we have made much progress. For the first time ever, we have an official national Gastroparesis Awareness Month, and we have engaged in all sorts of efforts designed to spread awareness and information and to care for one another.

In any case, I want to share a personal message with you. I am not comfortable doing this, but I am going to do it nonetheless. I have been blessed by knowing all of you. You all thank me frequently, and you are kind to me beyond measure. You tell me I have done so much for you, but I do not think you understand how much you have done for me. You may not believe this, but I have never been a particularly warm person. I have always cared about people -- but sort of in theory and at a distance, if you know what I mean. As a matter of fact, I have struggled greatly over the years to simply tell my family members and those very close to me that I love them and share hugs and such with them.

I am not sure I will ever get to the point where I can say I am grateful for this illness, but I will say that I have learned that some good can come of it. I hate what this disease has done to my body and all of the things it has taken from me. But I can truly say that I am a happier person today than I was three years ago. This disease is physically devastating, but it has been good for my soul. My sole focus now is on helping others -- mostly through the support groups. It has given me purpose and meaning, and it has given me greater empathy and understanding. It has also allowed me to open up to others in a way that I never would have before. It has taught me that there are others out there who desire to help, and that I sometimes have to be humble enough to let them help. It has taught me greater dependence upon God and has allowed me to focus on what is really important in life. Lastly, it has taught me people can make a difference in the lives of so many others.

When I first started here, I thought I would come online, gather a little information, and then be gone again. But you all have opened my eyes to another existence -- need beyond compare, but compassion beyond compare as well. I have argued with God about this many times. I have told Him in no uncertain terms that I am not the person for this job and that I cannot do it -- and He says to me time and time again, "Oh, but you are and you will do it." I have told God off on numerous occasions as well. I have ranted and raved about how this was pointless, how I am only one person, how we do not have the numbers, or the power, or the money to accomplish anything. He allows me to rant, and then He says something like, "If you are finished now, I believe you have a few Facebook messages to get to, and that petition is not going to sign itself."

So, here I stand... and I am thankful. I am thankful for God's wisdom and patience, for all of you and the kindness you continue to show me, and for the chance to ring in 2017. I wrote the blog below to express some of this struggle (my personal struggle). I do not know if anyone else will find it meaningful, but I share it with you just in case. Love you all very much!

HAPPY NEW YEAR!

BLOOD LUST

No one genuinely sees me,

Not my depths, way deep down

Knows anything of my heartaches,

Of the chains by which I am bound.

Choose not to share my frailties,

What good would baring them do?

Focus on those who are aching,

But I have a beating heart, too.

No matter the amount of effort,

For some, it is never quite enough,

Cannot please the scoffers,

Cannot quench their thirst for blood.

Labor until I’m bone-weary,

But my work is never done,

How dare they judge my motives

Or put words upon my tongue!

False compassion and lies of love,

Will never fall from my lips,

Though some trickle words so sweetly,

With poison they most certainly drip.

Think that they have deceived me,

But my eyes are open, unobscured,

For I will willingly be bled dry,

For the cause of those I love and serve.

True compassion has no limits,

Does not judge, but to all extends,

Holds back its biting and gnashing,

Means do not justify an end.

I answer not to men,

But only to Him above,

He who formed and shaped me,

Who, alone, weighs the depths of my love.

My path is set before me,

And though they may try to distract,

Each footstep is directed,

For me, there’s no turning back.

"The Most Wonderful Time of the Year"... with Gastroparesis?

It’s the “most wonderful time of the year,” we are told in verse, but for those of us living with digestive disorders, it can be the most challenging time of the year.  Despite presumptions of holiday gatherings, stacks of presents beneath lavishly decorated trees, and carolers dressed in finery, spreading good tidings, Christmas is a season filled with physical, emotional, social, and financial hardships for many in our community.  The dark winter days, overflowing with constant reminders of illness-free Christmases gone by, demands and expectations of excellence from ourselves and others, and social and financial pressures, lead to anxiety, depression, loneliness, and heartache for some.

Though we long to connect with family and friends this time of year, our illnesses often prevent us from doing so in the ways we prefer.  Travel, though sometimes necessary, is cumbersome and fatiguing; shopping taxes our energy and gift exchanges stretch our already nearly-snapped budgets; physical symptoms produce anxiety over whether we will be able to make it to family gatherings and holiday parties; and the delectable confections which appear at work, in our homes, and throughout public venues tempt and torment us.

In addition, we are plagued by memories of healthier days past when we engaged in merrymaking and feasted upon sugary goodies until our little hearts were content.  Many in our community find it challenging to cope with the countless demands placed upon them this time of year – mandates to join events in which they once participated; requests to prepare, attend, or host extravagant parties; long distance travel requirements; and anticipation that they will retain a cheerful mood throughout the whole affair.  On the other hand, some desperate souls, those homebound or who have lost friends and loved ones, struggle to find ways to cope with the resulting isolation and loneliness – with the lack of such demands, if you will.  Perhaps they were once included in festivities but have now been forgotten by those who have moved on with their “normal” lives.  Or maybe they choose to hide from the hustle and bustle of the season because they believe they are unable to participate in meaningful ways.  In any case, such circumstances can easily lead to discontent and distress. It is difficult to watch the jolly world turn around you when you are faced with the burdens of chronic illness.

But all hope is not lost.  With a little planning, a bit of compromise, and a fresh, yet realistic outlook, we can perhaps minimize the ill effects of this arduous time and help each other to find new ways to enjoy this holiday season.  I offer the following suggestions for your consideration:

*First and foremost, let go of your expectations of perfection.  Easier said than done, I realize, but you are likely not physically capable of acting in the “ideal” ways you did prior to diagnosis.  Though necessarily different now, holidays can still be enjoyable, even when details do not quite meet your exacting standards.  Find joy in the little things – moments with family, quiet evenings in front of the fire, watching Christmas classics on video, or playing board games with friends while sipping hot beverages.

*Let go of others’ expectations for perfection as well.  You are not obliged to live up to anyone else’s prescribed notions of how this holiday should unfold.  You can hand-pick the events and gatherings you wish to (and feel able to) attend.  You can limit your time at such affairs or cancel at the last minute.  Likewise, you do not have to succumb to the pressure of participating in every gift or card exchange.  It is perfectly polite and acceptable to say, “I am sorry, but I am too ill to make this event,” or “My apologies.  I am afraid I will not be able to exchange gifts this year.  It has been a rough spell for us financially.”

*If you are alone and do not wish to be, consider turning to social media sites, online events, support groups, or telephone calls for companionship.  If you are physically able, think about volunteering at a local long-term care center or children’s home, joining a public tree-lighting or holiday party, or attending local church services, plays, or musicals.  Though this may not rival family gatherings, it might help you feel a bit less lonely and isolated. 

A few more practical, tangible tips:

*Simplify where you can.  You are not required to decorate that 9-foot pine with tinsel, lights, and perfectly-placed ornaments, dangle garland from every banister, mantle, and doorway, or send cards to all those with whom you have ever come into contact.  Buy a small pre-lit and/or pre-decorated tree, gaze at your neighbors’ holiday lights instead of stringing your own, and present close friends and family with “virtual” greeting cards rather than stuffing envelopes.

*Consider online shopping.  This will save you loads of time and energy.  You can easily search websites for the most affordable prices, and in many cases, you can have gifts pre-wrapped and shipped directly to the recipient.  Alternatively, consider gift cards to loved ones’ favorite places.

*Set a budget and refuse to exceed it.  You might have to sacrifice that “ultimate” gift you had your heart set on, but is the added budget strain really worth it?  If you have children and cannot afford presents, contact charities like the Salvation Army, church groups, or clubs/organizations that operate assistance programs.  Thrift stores such as Good Will offer inexpensive merchandise as well, and even homemade goods, crafts, or foods can become meaningful gifts.

*If traveling, budget plenty of extra time for rest stops; bring “safe” foods/nutrition along for the trip; pack extra clothing in case of accidents; and make certain you have ample supplies and doses of medication.  If you will be separated from your luggage, keep your medications with you in their original prescription bottles or containers.  You do not want to risk your medications being lost with your baggage.  Check accommodations ahead of time when possible.  You will want to make sure your needs will be met once you arrive at your destination.

*Rest, rest, rest.  Find quiet places, allow down time, relax, and limit your engagement when necessary.

This Christmas season may not be a replica of pre-diagnosis Christmases past, but it can still hold delight, and you can create memories you and your loved ones will treasure.  Acknowledge your feelings and grieve for times past if need be, but free yourself from the heavy burden of impractical demands and expectations.  Set realistic goals, ignore unreasonable demands, and find joy in the few special moments spent with loved ones or even in the service and company of strangers. 

Happy Holidays!

Feast Your Eyes on a Gastroparesis Holiday

This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the Gastroparesis community. Far from being a festive season, this can be one of the most challenging times of year for us. The physical, social, emotional, and financial hardships associated with these life-altering diseases and disorders make many of us wish we could hide from the holidays rather than incite us to join in the celebration. And though we are glad our families and friends can savor the wonderful treats associated with the holidays and join in the various festivities, we long for understanding, and we yearn to be included in some fashion.

We want you to know that there are numerous obstacles surrounding the holidays for those of us with digestive disorders.  To begin with, many of us are unable to participate in the usual holiday events and family get-togethers due to the ever-present physical symptoms of our illnesses and the sheer fatigue that accompanies them. We are, quite simply, too sick and tired to make it to the party.  Because we are worn down from battling pain and nausea, and because most of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to prepare food, purchase and wrap gifts, dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event.  We cannot afford to use precious energy needed for our survival on these lovely but unessential “extras.”

Travel is likewise difficult because of our fatigue but also because many of us must carry along cumbersome equipment and supplies required to treat our conditions.  We worry that we will forget a necessary item or bring fewer supplies than needed, and we sometimes fear that our symptoms might worsen to the point where we might need immediate access to our medical providers.  We wonder if local hospitals and medical providers will be able to quickly assess our health needs and assist us in an appropriate manner should supplementary care be required. 

In addition, many of us are disabled, unemployed, and/or have high medical expenses and find ourselves financially strapped at this time of the year.  We would love to purchase goods and presents and make long trips to see loved ones, but we find ourselves struggling to pay for our basic medical expenses and cannot afford to spend extra on things above and beyond the essentials for our survival.  We hear your kind offers that we are not obliged to pitch in for the meal or reciprocate gifts, but for many of us, this creates a sense of guilt and makes us feel as if we have not done our part or contributed in a meaningful manner.

Please be aware that, emotionally and mentally, these pitiless diseases take a heavy toll on us at this time of year. Many of us become depressed because we can no longer participate in the holidays in the same manner we did prior to diagnosis.  We find it difficult to cope with the abandonment of old traditions.  We are, in short, not quite our usual cheerful selves.  These feelings may intensify if we are unable to attend the usual celebrations, and our feelings of isolation, the sense of being “ignored,” can become crippling.  Rather than reveling, we often find ourselves mourning the loss of our old lives.

Though the entire holiday season can be quite stressful for us, Thanksgiving is particularly problematic, as it is a holiday that largely centers around the feast itself, and deserves special mention.  Some in our community cannot eat at all and many are severely limited as to what they can consume.  We are flooded with images of sumptuous food that appear on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time, and yet we are unable to consume even a few bites of these delicacies.  Can you imagine the anguish of watching everyone around you enjoying beautifully crafted homemade meals, lush with every food you dream about every single day, while you sit to the side, unable to taste these treats?  It is painful – physically and emotionally.  We long to join in the normal events, but the temptation to eat that which we cannot is sometimes agonizing and overpowering.  At times, the mere smells of the foods at such events keep us away.  Since nausea is a major concern, the aromas filling your houses are often intolerable to us.  And – though not a pleasant topic – we are concerned that we will not have unfettered access to your restrooms should they be required. We are further horrified at the thought of creating an awkward and embarrassing situation for both ourselves and our hosts.  Such are the joys of our physical symptoms.

We desperately seek to take part in the holiday happenings, but we do not know how to make our loved ones see that we cannot celebrate in the same fashion that we used to or that most of you still do.  Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by limiting our time – coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine, or with the help of another such creative tactic; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend. 

Please try to understand that when we pass up invitations or do not "like" your social media posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you.  We still yearn for companionship and inclusion.  We only want to escape the circumstances that make dealing with our conditions more difficult.  Believe it or not, we do not like to see our family and friends uncomfortable.  We are well-aware that we can be an inconvenience and a source of guilt for those who do not know how to help us and who feel bad for partaking in the dinner and festivities while we watch from afar.  We do not wish to see our loved ones enjoy the merriments any less because of our presence.

What we would like, and what our families and friends can offer is, first and foremost, sensitivity to our plight.  We miss our old lives and long for things to be the way they were prior to diagnosis.  We struggle greatly to accept that our lives will never return to the “way things used to be,” and we sometimes get lost in those sad moments.  We are capable of happiness at this time of year, but we might forget that for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives.  We fight to find substitute sources of delight and focus on what truly matters.   

In addition to your sensitivity, you can support us by offering alternatives and minor accommodations.  Perhaps you might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste the culinary creations that it took you “all day” to produce.  Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so that we miss the dinner portion of the event and do not exhaust our limited energy resources.  We would likely appreciate the chance to rest in a secluded spot without the noise and commotion normally found at holiday gatherings when necessary as well.  We do not wish to insult you.  We know you have gone to great trouble, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event.  We are sure you would not wish this for us. 

And if you are feeling especially compassionate and accommodating, perhaps you might consider holding a completely separate holiday affair, possibly less boisterous, which does not include food in any form – a second event just for us.  Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes.  We know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.

We do not expect nor want you to give up the traditions and events that you have always enjoyed at this time of year.  We ask only that you understand that we often mourn days past and long to have those times back again.  It is an especially difficult time of year for us.  We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it is not really about the food.  It is truly family, friends, and good times spent enjoying each other’s company that make the holidays special.  We welcome and cherish those moments. 

Happy Holidays!

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

*Please Note: A shorter, slightly altered version of this blog was published on "The Mighty" at https://themighty.com/2016/10/difficulties-of-the-holiday-season-for-people-with-gastroparesis/. This blog will also be available in the Association of Gastrointestinal Motility Disorders (AGMD) quarterly newsletter.  You can find additional information about the AGMD at http://www.agmd-gimotility.org/.*

Gastroparesis: Surviving Thanksgiving

Thanksgiving can be a particularly difficult time of year for those of us with digestive disorders.  While all holidays certainly include their fair share of tempting treats, Thanksgiving centers around food and feasting like no other.  Rather than a day of “giving thanks,” this day too often becomes one which almost entirely revolves around the meal itself, and because of this, those of us with limited dietary options are seemingly constantly reminded of that which we have lost.  If we allow ourselves, we can easily sink into a state of depression and despair. 

So, how are we to manage?  Well, I cannot promise you that this will be the most delightful time of year.  It is not pleasant to give up the foods that we enjoyed prior to diagnosis. There will no doubt be moments where sadness sets in, where we mourn our old lives, and where we wish we could curl up and hide from the world.  But, though challenging, there are many approaches and tips that might help us better cope with these struggles and make the best of a trying situation:

*To begin with, it is perfectly acceptable and polite to make others aware of your condition.  Do not be shy about your needs.  You can be honest and open about your requirements and wishes while still presenting them in a respectful and non-demanding manner.

*Rest up before and after the big event.  The more energy you have, the better you will be able to cope with the physical requirements and stress the day brings.

*If the holiday event is local, one option is to skip it completely and, instead, ask friends and family to stop by your residence for a few minutes before leaving the area.  This way, you can remain in the comfort of your own home and still enjoy a brief visit with loved ones.

*Another option is, of course, to omit the food entirely from your celebration.  Yes, I know it sounds radical, but it is possible to have a Thanksgiving party without the feast.  Now, since this will likely not be a popular option, perhaps, as an alternative, the party might include food, but be centered around something other than the dinner – playing games, watching a movie, engaging in conversation, etc.  Use this occasion to catch up with family members and friends with whom you have not visited for some time.  The meal may have to be offered, but all can agree that it does not have to be the focus of the day.

*Ask the host if you may arrive late or leave early.  Maybe you can skip the dinner portion of the meal entirely.  But in any case, limiting your time there will help with fatigue.

*Bring your own safe foods/nutrition or “eat” before arriving at the event.  This will likely reduce your cravings and lessen temptations.  You can speak with the host beforehand to clear this, or perhaps the host might even offer to make a few dishes you generally find tolerable.

*Talk about restroom arrangements in advance.  You will wish to have unfettered access should you feel ill, and perhaps you can arrange to have a restroom reserved for you alone should the need arise.  Bring a change of clothes in case of accidents.

*Are there places away from the crowd where you can rest or be alone if you are feeling particularly unwell or tired?  Might you leave the room or go for a walk if sitting at the table during the meal is not something you wish to do?

*Encourage a “gratitude” discussion.  What are you all thankful for?  Such a conversation will give you a chance to reflect on the blessings you still have while perhaps stirring the rest of the family to consider all their good fortunes as well.  This may lead to greater awareness and empathy and might give you and your loved ones much-needed perspective about the day.

*If all goes awry, and you find that you have consumed far more than you perhaps set out to, forgive yourself and shift your attention to getting through the aftermath.  Sometimes we do what we know is not best physically because it lifts us emotionally for a time, or simply because it is difficult to constantly resist temptation.  These are difficult choices, and we are not perfect human beings. 

Thanksgiving can be a harsh reminder of our former lives.  We have much to be thankful for, but we cannot help but notice, at times, that we have also lost much.  Despite all efforts and best intentions, you may find yourself dealing with feelings of guilt, sorrow, and loss.  Acknowledge the feelings, as some of this is likely unavoidable – but also be kind to yourself.  Surviving the holidays intact is a lofty goal for those of us with digestive disorders, one that we can meet, to varying degrees, with a little care and understanding from ourselves and others.

Happy Thanksgiving!

BITTER COLD

BITTER COLD

Warm ourselves with our memories,

But the chill encircles; it is deep,

Wrap our arms around our fragile bodies,

Meet the frozen ground, sit and weep.

Inside, it is comfortable and cozy,

Through frosted window panes we dare to glance,

Catch a glimpse of long-forgotten celebrations,

We would join you, given half a chance.

Candle-lit dinners and sweet confections,

On your festive tables do abound,

Aromas drift slowly outward to meet us,

Drink it in, but no welcome to be found.

Cast out and abandoned by the others,

Lepers, beggars, we fight the bitter cold,

Misfits, lessers, abandoned to our fate,

Downhearted, unfortunate wayward souls.

Inside by the fire – What’s that rapping?

Did you hear it? An annoyance, perhaps the wind,

Ignore it, tend the embers, fan the flames,

It is nothing, a mere phantom, we’ll pretend.

Invite gloom to our bright, festive galas?

Dampens the spirit, ruins the holiday mood!

Gaunt faces and frail bodies depress us,

Busy setting the tables and preparing our food!

Glance sideways out snow-covered windows,

Vision blurred by the blizzard’s vast path,

Trees to trim, bows to tie, wreaths to hang,

Carols to sing and bountiful gifts to wrap.

No time for the sickness and sadness,

Welcome suffering when our lives are intact?

We care in theory and at a great distance,

But your illness, it does distract!

Treats and presents drive the holidays onward,

As our feasts and trees we gather round.

Ornate settings, fancy garments, merry-making,

Isn’t that what it’s all about?

By the fire, we are snug and sheltered,

Crack the door, and usher in the bitter cold?

No, our lives hold such joy and such fineness,

Risk imperfection, infirmity taking hold?

No pity for those in the frozen wasteland,

No warm blanket of compassion to share,

These souls who struggle in the ice storm,

Are they our concern?  Why should we care?

The gentle rapping from the outside, scarcely noticed,

The faint calling you so blithely ignore,

Is the wail of the lost, the forgotten ones,

The tender knocking on your cold heart’s hard door.

Have you forgotten you cherished and loved us –

That we were once welcomed into the fold?

Have the brisk biting winds masked our cries?

Have you been numbed by winter’s bitter cold?

How can we warm what’s inside you,

Spark the flames in your icy, callous souls?

How can we reach deep inside you,

Ignite kindness, heat your frozen-solid core?

We who peer in from the outside,

Shivering beneath icy-cold stares,

We who are molten on the inside,

Harbor souls like white-hot blazing flares.

The others could learn much from the exiles,

Gentleness, generosity, great care,

Tenderness, mercy, understanding,

Love and kindness beyond compare.

It is not about the bows and the ribbons,

The parties, the balls, the elaborate feasts,

It is about the genuine love between us,

So much more this time of year should mean.

Bring us in from our icy cruel wasteland,

Harbor us instead in your warm embrace,

Welcome us in from the bitter cold,

Let your fellowship us once again taste.

For the beauty of this holiday season,

Is found not in the material “things,”

But in the joy of simply being together,

Sharing with loved ones who peer through the panes.

HAPPY HALLOWEEN

It is that time of year again when spooks and goblins abound.  Halloween is a holiday favorite for many, but for those with digestive disorders, it can be a scary time indeed!  Well, fear not, I have some tips that might help make this season’s candy and treat-filled events a little more palatable for those who struggle with the fatigue and sugar-filled temptations that sometimes surround Allhallows Eve.

Many of us, especially those with young children, dread Halloween festivities and trick-or-treating because we are faced with severe limitations on what we can consume and on how much energy we can expend.  It is often difficult to muster up the strength to take the children door-to-door or attend the latest costume party hosted by family or friends, and the tasty treats offered pose a threat to our well-being as well. 

Too frequently, we allow these obstacles to stand in the way of our holiday enjoyment.  We believe that if we cannot participate in every event and partake of all the treats offered up, we must refrain from any sort of celebration at all.  But this does not have to be the case.  There are many alternatives to the traditional Halloween celebrations, and there are numerous ways to manage the obstacles presented.  Here are a few:

• If energy is a problem for you and you are unable to take your child(ren) trick-or-treating, consider alternatives such as “Trunk-or-Treats,” youth group events, or parking lot festivals.  These are one-stop venues that allow children to collect bags of candy in a short period of time, minus the endless walking required by neighborhood trick-or-treating.  You might also consider allowing a neighbor or trusted friend to take your little goblin through the neighborhood in your place. (See http://intelligentdomestications.com/2013/10/what-is-trunk-or-treat.html for additional information.)
• If you wish to attend an event but know your illness limits you more at certain times of the day or evening, try to schedule events at a time when you generally have the least trouble.  For instance, if your symptoms are worse in the evening, consider daytime haunted houses, museum and zoo galas, or fall festival events such as those held in apple orchards and pumpkin patches.  (For a wonderful example of what a fun-filled fall festival might include, see http://www.goebbertspumpkinpatch.com/#)
• When attending events, consider taking your own “treats” – items that you know to be relatively “safe” foods, so that you can enjoy a refreshment without the dire consequences of consuming problem foods/liquids.
• While the children are munching on the off-limits-to-you candy, give yourself a treat as well.  Perhaps you can tolerate a pumpkin smoothie, pumpkin spice creamer in your coffee, or a mug of hot cider.  You might even be able to enjoy a piece of hard candy or a small, soft chocolaty treat.  This will help you and your family feel as if you are truly joining in the festivities. (For a fall recipe suggestion, see: http://www.lovebakesgoodcakes.com/2014/11/pumpkin-pie-smoothie.html)
• If you are dressing up, try to choose a costume that accommodates your specific digestive disorder.  For instance, if bloating is a problem, choose stretchy or over-sized costumes.  Be creative!  I have known some community members who have even incorporated their tubes and IVs into their costumes, decorating them to match their particular costume choice.  In any case, be as comfortable as you can.  It will make the day/evening go much more smoothly!
• Limit your time at events, warn others in advance that you may have to exit early or cancel at the last minute, and do only what you can reasonably do.  Last year, though I had planned to roam the neighborhood in my spiffy “Phantom of the Opera” costume, I chose instead to dress, snap a few photos with my family, and retire for the evening.  It was simply all I could manage at the time.  It was not ideal, but it pleased my daughter that I could participate in some manner and she now treasures the photos marking the occasion.
• Consider “virtual” events.  For the last two years, members of my online support groups who are homebound gathered together in online events where those who were able posted photos of themselves and/or their family members in costume.  Those who were too fatigued to dress in costume digitally altered photos of themselves to appear as if they were in full regalia.  (See example below.)  It was loads of fun and distracted us from the disappointment of not being able to participate in the more traditional festivities.
• Consider spontaneous events.  Choose a day (or a moment) when you are feeling your best, dress in full costume, and walk the neighborhood.  Is it embarrassing?  Maybe.  But I can almost guarantee your child(ren) will love you for it and will have a unique memory to cherish.  Alternatively, invite friends and family to join you at your home for a last-minute, spur-of-the-moment celebration.  Not everyone will be able to attend, but perhaps you can entertain a few of your more adventurous loved ones.

These are but a few suggestions for enjoying the season in alternative ways. I hope you have found them useful. But please remember, if all else fails, and you simply cannot partake in any sort of activity, forgive yourself and move forward. There will be new days, other events, and fresh opportunities for sharing quality time with your family and friends. Hold on!

Happy Halloween!

TURN THE PAGE

She pens her poetic story,

Marks the callous pages of time,

Bittersweet winding journey,

Inscribed upon her restless mind.

Chronicles her ever-changing existence,

Notes the infirmities and grievous pain,

But her tale runs far deeper than this,

For of this saga much more remains.

Turn the page on what you are thinking,

This novel does not end that way,

Life is seldom what we envisioned,

And the best-laid plans can go astray.

Turn the page.

It began as most all accounts begin,

A child with high hopes and dreams,

Plans for a long and bright future,

Life wide-open and joyful, it seemed.

No time to stop and ponder,

Whether the story was compelling,

Adding chapters at whim, at liberty,

On unhappiness, there was no dwelling.

No concern about the lesser beings,

Mere minor characters to she,

Bad reviews and strong critiques,

Not considered, not noticed, not seen.

Turn the page.

But swiftly fly the pages,

And a new chapter soon began,

No foreshadowing this turn of the tables,

Takes place in a dark, foreboding land.

Turn the page on the life that she once knew,

Gone the carefree, the light, and the green,

Trapped in a desolate desert,

New chapter, new verse, new scene.

Turn the page.

The tone and the mood have been altered,

Cheerful setting now shadowy and bleak,

A land full of agony and misery,

One from which there is little relief.

This chapter, indeed, feels the longest,

Though the page count is relatively brief,

Not a grand proportion of the story,

But yet the focus, she somehow believes.

It is suspenseful and intriguing,

Though quite gloomy and melancholy,

It speaks of opportunities missed,

Highlights shallowness and foolish folly.

It encompasses the tear-stained pages,

Which recount the troubles and deep despair,

Of a heartbroken soul who does flounder,

Searching for meaning, in profound disrepair.

Turn the page.

The pages seem ragged and tattered now,

The cover is faded and worn,

The binding is barely holding on,

The edges are frayed and torn.

But the narrative has taken a thoughtful turn,

Greater definition and sensitivity than before,

The protagonist is growing – and learning,

That in a meaningful life there is so much more.

Turn the pages and keep reading onward,

Though the setting is still exacting and cruel,

The plot is growing ever thicker,

The epic novel ever richer and truer.

Turn the page.

Our heroine is gaining wisdom,

Acquiring compassion and full perspective,

She no longer wears heart blinders, protectors,

Becoming sincere, empathetic, reflective.

Turn the page on all the grief and anger,

She longs for a shiny brand new edition,

Delete the harshness and omit the anguish,

Insert new hope, with the author’s permission.

Turn the page.

Turn the page on past chapters and sections,

Too difficult to remember anyway,

All new content and improved format,

Are the goals for this castoff castaway.

Turn the pages and write the future,

Not just for herself but for those who surround,

Change the setting and the well-worn theme,

For the whole community she has now found.

Edit out the pain and suffering,

Introduce a world fresh and anew,

One with hope and gentle tenderness,

With understanding and mercy through and through.

Turn the page.

Our heroine is now weak and shaken,

For she thought that everything she knew,

But she was most sadly mistaken,

Her grand plans and lofty values all askew.

She believed herself to be the novelist,

Though deep down she should have known,

She was nothing more than inconsequential,

The True Author holds the author’s throne.

And He is an accomplished playwright,

A true poet, a genuine Nobel Laureate,

A superior author and skilled illustrator,

Whose stories are nothing short of glorious.

Turn the page.

The story is of yet unfinished,

But the foreshadowing is rather clear,

The heroine’s one true mission,

Begins from the new beginning point – here.

All before was but an introduction,

Setting the stage for our protagonist’s role,

She does not belong among the others,

She does not need to be physically whole.

Moves the plot along very nicely,

When the heroine recognizes the theme,

To support, serve, and guide the devalued,

Though minor characters they once seemed.

Turn the page.

She is made whole through the mission she is given,

And only then is her tale at last complete,

Only through her attendance and dedication,

Does the bittersweet once again become sweet.

Turn the page on the life that she once knew,

Filled with suffering, questioning, misery,

One with all manner of horror and pain,

New chapter, new verse, new scene.

Turn the page.

The pages have now all been published,

For all who have eyes and care to see,

Our heroine is no magnificent author,

But a master storyteller is He.

INVISIBLE ILLNESS: DEFIANT HOPE

One of the themes that has been suggested for Invisible Illness Awareness Week this year is “Defiant Hope.”  But what is defiant hope?  Well, to me, it is akin to “hoping against hope,” believing in something most people would say defies all odds.  It is finding a way to face a future that is, perhaps, mere survival at best.  For those of us who live with serious invisible illnesses, such as the Gastroparesis which seeks to destroy my own body, it is a way of life.

Beyond aspiring to survive the day, those in my community seek defiantly, rebelliously, to live a full and meaningful life in spite of this cruel disease.  We hope for strength and stamina to face the pain, nausea, and fatigue that we daily confront.  We hope to be able to push our symptoms to the back of our minds and deep inside our bodies and somehow be able to complete the tasks of the day, or, on a particularly successful day, attend some sort of outing or event.  We hope to have the courage and will to interact with our families and friends in meaningful ways, show up for our jobs, attend church, and join in the other many activities we participated in before our diagnosis.  We hope to enjoy a bit of life instead of simply enduring it.

But rather than further define defiant hope, I offer the following illustrations.  Defiant hope, for those of us with invisible illness, is:

*the woman who enrolls herself in college courses, though she knows she will struggle greatly to attend classes and complete the work, because she wants to fulfill her dream of creating a nonprofit that will benefit others in the community

*the mother who rises every morning and seeks medical answers for her two children who, like her, have been afflicted with this devastating illness, despite being told time and time again that “nothing more can be done”

*the husband who, because his wife cannot bear to lose him, fights back tears and musters up the courage to drive himself to the local ER where he knows (almost) beyond a doubt they will mock, accuse, and offer little assistance

*the mother who undergoes surgery after surgery, sacrificing more of her body and soul each time, so that she can survive a little longer and take her children to their baseball games and NASCAR races for a few more seasons

*the father who drags his tired, beaten body to work every day and faces the less-than-understanding glares of his co-workers and superiors because he is the sole income-earner and has small children at home, and who dreams he can get through this day, this month, this year, for their sake 

*the woman who sends cards to others in her community, despite barely being able to hold her head up, because she wishes to add cheer to their otherwise dreary and lonely days and believes beyond reason that this simple act of kindness will give others cause to go on hoping

*the daughter who pulls herself away from her mother’s hospital bed and forces her own tired and failing body to post awareness articles, memes, and encouraging words on our social media sites because she believes this sharing will enlighten others and spur them into action that will one day save us

*the husband who spends his life-savings and sacrifices his comfortable retirement plan to take his wife to the newest, best treatment facility in the blind faith that the doctors there will know of a new or more effective treatment that the other facilities somehow overlooked

*the child who begs her sick and down-hearted mother to please try a bite of the food that has failed her a thousand times before because, “Mommy, this time might be different”

*the wife who books a flight for her family’s next vacation in a faraway paradise, though she cannot for the life of her figure out how she will make it to the airport, let alone survive the entire two weeks of adventures, and who knows she might have to cancel before all is said and done

*the cousin who begs, pleads, and ultimately nearly forces his loved one to take her medicine, regardless of the fact that it is obvious to both of them it is no longer effective, and who picks her up and carries her to the hospital rather than giving up when it does indeed fail

*the advocate who wills her frail, weak soul to pick herself up, seat herself at her computer all day long, every single day (as she has done for the last nearly 3 years), writing, e-mailing, tweeting, and calling every medical professional, politician, government agency, and media source she can find about her illness, despite rejection after rejection, because she defiantly believes that someday, someone will help her make the “invisible” visible

Yes, my community defiantly clings to hope.  Beyond logic, we hope to someday make our invisible illness visible to those around us who do not yet see.  If they are not willing to open their eyes to us, to our illness, perhaps they will open their ears and hear us.  If we are loud enough, persistent enough, and refuse to go unnoticed, maybe we can one day make ourselves known to them.  So, we continue our rebellion.

We defiantly hope for a cure and anticipate that medical professionals will gain understanding of our illness, that we will no longer be viewed as hypochondriacs or drug-seekers, that we will be given the medications and treatments we know to be helpful for our condition, that our pain will be adequately addressed, and that we will be guided toward options that can provide us with better quality of life.  Further, we defiantly expect that the FDA will not deny us those options, that our insurance companies will cover them, and that pharmaceutical companies will search diligently for safe, effective treatments and refuse to charge outrageous prices for our life-saving drugs.

We defiantly hope to be financially secure despite the costs associated with our illness.  We hope we will not lose our jobs, homes, and possessions due to the effects of this disease.  We hope, one day, Gastroparesis will be treated as the devastating disability we know it to be, that our government officials will recognize the seriousness of our situation, and that we will be granted necessary research dollars and policies beneficial to us.

But above all, we defiantly dream of a day when we will be understood, appreciated, and cared for by all those who surround us and impact our lives.  We long to see our children grow up, grow old with our spouses, realize our dreams and goals, and once again enjoy life without pain, nausea, and fatigue.  We defiantly hope for a full life, a bright future, and an end to our seemingly ceaseless struggle to merely survive.  I defy you to take that defiant hope from us.

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Please Note: Invisible Illness Week is September 26-October 2, 2016.  You can help raise awareness by posting your stories, memes, pictures, and articles on all social media sites and by using the hashtags #InvisibleIllness and #IIWK16 on Twitter.  If you would like to join an event, Mental Health and Invisible Illness Resources is hosting the following on Facebook: https://www.facebook.com/events/552105701663138/.  Thank you so much for your time and attention!

THE HUMAN STATE

I know what it is like to deal with “difficult” people.  As an administrator in several online Gastroparesis and chronic illness groups, I have addressed the arguments, accusations, and hurt feelings caused by their inappropriate and downright harmful behavior on several occasions.  I see the havoc these souls wreak on a daily basis.  Further, in general, I recognize that, for whatever reasons, there are those among us who seem to see only the negatives, who behave selfishly and self-importantly, who viciously attack others for seemingly no reason, who pout, spew all sorts of venom, and never seem to be able to get along with any of the people around them – even the ones genuinely trying to help.  But while I am frequently tempted to renounce these people, deep down, it pains me to do so, and I long for a better way, a more perfect path.

I cannot help but think that the trying people who sometimes surround us must be seen in a different light.  I recognize that poor behavior is never acceptable and that it is reasonable to expect others to be kind regardless of their history, current circumstances, and feelings, but at the same time, I also understand that no one can ever really know the factors and events that have shaped others and have made them the beings they are.  No one can know the intimate and secret details of another’s heart; no one can feel the deep hurt, the anguish that overwhelms them; and no one can truly experience their lives in a wholly personal manner. In short: you do not know another man’s story until you have lived it.

So, rather than outright reject negative (and sometimes hateful) people, I strive to take an alternative approach.  I am not always successful, nor do I consistently live up to the ideals I espouse, but I endeavor to live better, always.  I make my fair share of errors in judgment, and I sometimes take actions I later regret. I lose patience and am short with people on occasion. I let doubts creep in from time to time – and I always, always feel inadequate.  But I remind myself that people, including me, make mistakes.  We all have shortcomings, but we are all human beings, worthy of dignity, gentleness, and compassion simply by the nature of our existence. 

Now, let me be clear: I do not tolerate mistreatment, nor do I allow myself to be used, demeaned, or abused.  I am not a doormat; yet, I do not see my fellow human beings, even the difficult cases, as disposable and do not easily write them off.  After all, who else will care for them?  Indeed, I am my brother’s keeper.  And I have found that people are not purely “good” or “evil.”  They are, rather, a complicated and messy mixture of both, individuals worth knowing despite their flaws and frailties.  And while I seek to respond gently, uplift, and never harm, I am not a gushing stream of optimism, and I rarely direct “positive thinking” quotes and memes at those struggling.  I find these shallow and less than heartfelt, and I do not believe they strike at the heart of the matter or touch the souls of those in distress.  I do not see the value in trite sayings that leave people cold and unaided. 

Instead, I seek a more genuine approach, and I deal with people honestly, though as tenderly as possible.  I try to recognize that people sometimes lash out when they are in pain – physical or emotional.  There are those who never seem to have a tender word to say nor a helping hand to extend.  They intentionally and unintentionally offend those around them or take offense at words that were not meant to insult.  They distance themselves from others emotionally and have not the slightest clue how to return a kindness that has been offered them.  They fail to consider the feelings of others and shy away from giving and receiving sympathy. 

I further remind myself that people often fear the world and the people around them.  They have been wounded by the harsh actions and hostile words of others.  They are afraid to reach out, open their hearts and hands to those who truly seek only to aid them because they have not often experienced the grace and understanding that is being offered to them.  They do not value themselves or sense their worth because they have been treated as valueless and unworthy.  They have been mocked, berated, abused, and rejected time and time again – frequently by the very people who were tasked with caring for them.  Life – people – can be cruel and unfair.

I likewise tell myself that because no one has had identical experiences to my own, not everyone thinks or believes the way I do. Good people can and do disagree.  Beyond that, at times, people have weak moments or moments of anger, and they act impulsively. They behave irresponsibly, overreact, and wound others. This is regrettable, but is it really unforgivable? Must we jump on every small transgression?  Must we take offense at every spoken word?  The mistakes made by these “flawed” beings do not render them any less worthy of consideration, understanding, or support, nor do they justify harboring feelings of betrayal and anger or, worse yet, seeking retribution. 

We are imperfect human beings, but for the most part, we are all striving to get through the day the best way we know how.  I make every effort to focus on the good in people and spare them my judgment and the lashing of my tongue.  For, it seems to me, what the “difficult” people (such as I, on occasion) need least of all is to be surrounded by those who would repeatedly remind them of their failures and shortcomings, to again face accusations and cruel remarks that point only to their inadequacies and their weaknesses.  What they need far less than anything else is to face taunts, accusations, cruel rejoinders, exacting tones, screaming tirades, and vengeful responses.

So, I beg you, when someone offends you, or mistreats you, or reacts less than perfectly in any way, rather than cast-off and disavow them, please try to pardon them. Forgive them because it is the compassionate thing to do. Forgive them because they are perhaps struggling with a background and experiences you know nothing about. Forgive them because they are sick and tired and weak and hurting and lashing out in fear and frustration. Forgive them because they may have experienced all manner of injustice and inhumanity in their lives. Forgive them because they are human beings. Forgive them because you can and because it will make you a better person. 

Pardoning others for their transgressions and accepting them with all their weaknesses and flaws – that is what I find to be of value and how I endeavor to behave.  I long for a community that is a welcoming place for all to come and share their concerns, joys, heartaches, weaknesses, and doubts without fear of judgment, scolding, reprisal, or rejection – a community that is a safe haven where people feel comfortable sharing their innermost concerns without the fear of negative repercussions and spiteful responses. I yearn for an environment where we openly and honestly discuss anything in our lives that disturbs us, concerns us, fascinates us, uplifts us, or keeps us from healing, one on which we are respectful of one another, even when we disagree. Minor disputes do not have to become wars and excuses for our own wicked conduct.

I believe, albeit with great effort, we can create this sense of community.  Not everyone will respond to our overtures, of course, but it is perhaps our best hope at bringing people back into the fold.  Our world can never be perfect, but it can always be improved.  We can learn to exercise compassion and strengthen the bonds between us. We can learn to treat those “difficult” souls ever so gently and demonstrate for them a better way.  Rather than division, we can choose unity, forgiveness, acceptance, and grace, and recognize what we all have in common: hardships, deficiencies, failings, shortcomings, life in a fallen world – the human state.