Monday, December 18, 2017

For My Loved Ones, I Wish...

I was looking over some websites for caregivers recently and came across a topic I found interesting.  The host was discussing how some make Christmas "wishes," and inquired: “What is your wish for those who care for you?”  Now, I am not certain how my husband and daughter would feel about being categorized as "caregivers" in any formal sense, but they do care for and about me, so I believe that qualifies.  And while I appreciate the never-failing support they offer me during my darkest days, I have never really attempted to spell out in any proper manner what I wish for them.  I spent quite a bit of time contemplating that this weekend, considering and evaluating what my hopes for them truly are, and though my list is no doubt incomplete, here are a few of my fondest wishes:

* Above all else, I wish for them to know and genuinely feel the love and appreciation I have for them.  I value them above all others, and despite my sometimes harsh words, raw emotions, unreasonable expectations and demands, and temper tantrums to the contrary, they have never once truly disappointed me in any noteworthy way.  They are the constants who add stability and meaning to my life, the ones I know I can count on regardless of circumstances, no matter how difficult my days.

* I wish for them to grasp how special, how exceptional, they are for finding the strength to withstand the cruel realities of this illness, to persist despite the horrors of Gastroparesis which affect everyone in my life, but them far more than any others.  They bear physical, emotional, financial, and spiritual burdens which directly flow from my diagnosis and which cannot be ignored but must be daily addressed.  They are meaningfully and significantly impacted by my poor state of health; yet, rather than abandon, neglect, or disregard me, they exert endless effort to include, forgive, and accommodate me, and they fully believe their lives are better off with my presence than without.  Many times and in many instances, they have sacrificed material possessions, leisure activities, luscious meals, free time, and emotional peace because their love for and commitment to me outweighs their focus on “self.” 

* I wish for them to live free from guilt and with a focus, if only for brief spells, on their own well-being and happiness rather than feeling as if their lives must always center around me and my wretched Gastroparesis.  My husband and daughter are both brave and kind for silently and patiently enduring the limitations placed upon me and upon them because of this disease.  And though I am the one who cannot eat, perform typical (yet energy-draining) household chores, run errands, attend events, or participate in any number of activities which used to be commonplace, they are impacted by this as well.  They do their best to hide and downplay it, but I see the guilt and sorrow which haunt them when they choose to engage without me in celebrations, family gatherings, and school happenings, or, on the other hand, when they forgo those events because they are needed at home or do not wish to leave me alone during the holidays or on other such occasions.  In truth, in my heart, and in spite of my sometimes selfishly voiced objections, it is my hope that they pursue the activities and endeavors which bring them joy, even if those pursuits do not include me.  They have lives, dreams, and goals of their own, and they have already forfeited so many of these for my benefit.  I want them to live the most “normal” lives possible without fear I will feel abandoned or excluded and without regret that they somehow “missed out” on opportunities. 

* I wish them peace in their hearts and contentment in their souls regardless of circumstances and outcomes.  Hardships abound, and my fate may not be the one we would all prefer, but they must be at peace with whatever occurs, as I am.  That sort of serenity comes from inside and from knowing there is something beyond our current state, a purpose for our existence, an ultimate plan for our being – and it is possible to rest in that knowledge.  It is difficult to endure adversity, and it is almost never welcome, but one can experience overall happiness and tranquility despite the trying days, and this is my hope for them.

* Lastly, I wish – hope beyond hope and dream beyond what is rational – that one day, we will all live free from the punishing effects of this illness, that there will be a cure, or a remission, or merely a more effective treatment, which allows my family to once again participate in long abandoned endeavors and which frees our lives from the burdens so cruelly imposed upon us.  And short of this, I wish for them joy in the times we have together and certainty of knowledge that I am grateful for each moment spent with them, even when I fail to express this. 

* To my husband and my daughter: What we have endured together has strengthened us, sealed our commitment, united us for eternity.  You are my one wish come true, all that I value and all that I love, happiness, contentment, fulfillment, and delight.  You have made my life worth living and, despite the hardships, the sorrows, and the ever-increasing difficulties, I would trade this life for no other.  


Tuesday, December 12, 2017

MANAGING THE FINANCIAL BURDEN OF THE HOLIDAYS


























The holiday season can be a financially challenging time for those who live with chronic illnesses.  Many of us are disabled, unemployed, and/or have high medical expenses and are financially strained under normal conditions, but especially so this time of the year. And though we would love to purchase goods and presents for all, we struggle to pay for our basic medical and living expenses and cannot afford to spend extra on things above and beyond the essentials for our survival. Oftentimes, our loved one extend gracious invitations indicating 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.  How are we to cope?

Beyond relying on the understanding and compassion of our family members and friends, there are several steps we might take to minimize the pressure and guilt we feel and to participate in the festivities and gift-giving in meaningful ways.  I offer the following suggestions for your consideration:

* Let go of others’ expectations and refuse to feel obliged to participate in any activities or exchanges which stretch your finances beyond what you can bear.  There is no need to feel guilty for circumstances beyond your control, and protecting your financial well-being is an act of self-care which is borne out of necessity. It is perfectly appropriate to offer a polite refusal: “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 choose to participate, refuse to exceed your budget no matter how small.  This may mean sacrificing the “ultimate” gift you had hoped to purchase or giving gifts to fewer people than you would like, but in the long-run, it will save you from being in a financial bind and allow you to avoid the additional stress when payments you cannot reasonably meet come due.

* Suggest family or groups of friends draw names for gift exchanges rather than buying for everyone in the circle.  This will allow you to spend a larger amount on one gift instead of divvying up limited funds among many.  Or perhaps “White Elephant” exchanges of used or “re-gifted” items would be a welcome option.

* Purchase small gifts throughout the year when you have additional funds available and set gifts aside until holiday time.  That way, the expense of gift-giving will be broken up over time and will not feel so overwhelming when the holidays arrive.

* This might be obvious, but shop for sales.  Many stores have fabulous deals on Black Friday (the day after Thanksgiving) and Cyber-Monday (an online version of Black Friday on the Monday after Thanksgiving).  Check clearance sales both in-store and online, as some are exclusive to one location.  For additional savings, look for free shipping offers and percent or dollar-off coupons in local newspapers and on store websites.

* If your goal is to purchase for everyone on a long list of recipients, and you cannot bear to omit anyone from the list, perhaps very inexpensive gifts are an option.  Thrift stores (such as “Good Will”), overstock and limited-stock stores, and discount retailers (such as “Dollar Tree,” “Dollar General,” and “Dollar Time”) offer low-cost goods and one-time deals which might suit your needs.

* If you have children and cannot afford presents, contact charities such as the Salvation Army, church groups, or clubs/organizations which operate assistance programs.  A good place to begin your search for relevant charities is with the United Way.  This organization can often direct you to local charities which might be of assistance.  Food pantries can also cut down on the cost of preparing meals.

* Consider gifting homemade goods, crafts, or foods.  If you have a talent, share it with those you love.  Baked goods, hand-made ornaments, crocheted scarves, paintings, poems written on fine paper, well-intentioned notes in a hand-made or virtual cards, and other such items are often welcome and appreciated for the skill and effort they require.  After all, such presents cannot be found at retail stores and can be personalized to fit the exact tastes of your recipient.  They are unique and from the heart.

Whatever choices you make, please remember that, ultimately, the holiday season is not about the material items we give or receive; rather, its true meaning is found in giving of ourselves, our time, and our companionship.  A precious moment spent with loved ones is an unmatched and priceless gift of joy.

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ADDITIONAL RESOURCES

Sunday, December 3, 2017

IN THE SHADOWS

























Death is a nearly tangible being to me, an ever-present dark figure who lurks in the shadows and creeps nearer to me daily.  He knows me intimately and follows my every move.  He is constant, ubiquitous, endlessly prowls the corners of my rooms and my mind.  He looms in the background of every celebration, each joyous event.  He haunts my waking moments as well as my sleep, refusing to grant me peace, and robs from me carefree moments and untroubled thoughts.

At times, he seems warm and welcoming – promises such solace and release.  He speaks delicately and sweetly and softens me with his offers of relief from my pain and my burdens.  He waves his hand and paints a picture of glorious liberation, which is both sweepingly beautiful and horrifyingly deceptive.  For though I welcome sweet escape, an end to this anguish, I am still conscious of my yet unfulfilled purpose, as I await my appointed time.  And though his lips drip with honey, I feel the sting his fate brings, know the sorrow of those who will be left behind when I finally meet my demise. 

Oh, yes, I have caught glimpses, insights, into the true nature of this Pale Rider who torments me.  He is neither a comforter nor a gentle soul; he is a beast and a torturer who seeks solely to destroy my body and soul. In truth, behind the tender fa├žade and beneath the splendid mask, he is a leering, sneering, mocking creature, a murderer and a thief who has stolen the lives of many before me – friends, loved ones, mere acquaintances – some who joined him willingly and some without choice.  Indeed, from my own shadowland, I have witnessed his spiteful taunts, am repulsed by his delight, his sense of triumph, his sheer revelry in the plight of those taken far too soon for my taste.  He relishes the misery and fear of those deaths – celebrates the alarm his cruel twist of fate, the seeming randomness and unfairness of it all, creates in the tattered beings he leaves in the wake of his destruction.

In an instant, if I listen with care, his beautiful whispers are revealed as cruel shrieks, punishing reminders that there is ultimately no escape, and that, in the end, the victory is always his.  He implores me to succumb.  Why delay?  My resistance merely spells prolonged suffering, agony beyond compare.  Perhaps my surrender would grant me serenity, tranquility, a measure of dignity I might not otherwise be spared, he coyly suggests.  But I recognize his lies, as there is no path to his realm which is not fraught with misery – if not for myself, then for the precious souls who pray for my continued presence here – be that only one more day.

No, though my tempter, my tormenter, speaks of the inescapable conclusion I must conclude, I know his true essence and will not be fooled or swayed by his lies.  My existence is marked by struggle and marred by grief.  My days are tarnished and impure, even the most blissful moments touched by sorrow as well.  It is true that I have been forever altered by this demon who overshadows my life, and I can never again be the carefree, untroubled soul I once was, but I will not succumb to his deception nor surrender to his false offering.  Victory and peace lie not in Death’s hands.  For I know where there is shadow there is light, though sometimes dim, and I have also glimpsed my true Redeemer, who has numbered my hairs, counted my days, preordained my path, and appointed my time – who has won the battle before it ever began.  And, so, I endure and hope beyond hope for brighter days.