Saturday, February 13, 2016

True Love... and Chronic Illness

This Valentine’s Day, I am feeling sentimental, and I find my thoughts turning to notions of what it means to truly love someone.  It occurs to me that many people doubt their relationships because they have not been showered with bouquets of flowers, boxes of candy, and expensive gifts.  They fret because they have not been invited out to a pricey restaurant or been summoned to some lavish gala.  They lament the fact that they have not received that one special romantic card that sums up their unfathomable love in a few poetic sentences. 
But while all of these (missing) tokens of affection are splendid and can make a person feel quite special, it seems to me that love might be a little something different than all of this – something more.  Perhaps love is not about the hearts, candy, flowers, gifts, and festivities surrounding a certain day of the year.  Perhaps, instead, it is this…

·         It is my friends who call, play online games with me (like my sisters and cousin who play Scrabble with me, even though they know they will never win – and yes, that is a joke), comment on my posts, share coffee memes, write notes for no particular reason, and tell me every day that I matter and that the things I do make a difference in their lives and the lives of others. 

·         It is my neighbors who cook dinner and make treats for my family because I am too sick and too tired to provide this.  It is my neighbor who plants flowers for me and fails to take credit for this or even so much as mention it.  It is that same neighbor who delivers homemade hard candies for Christmas because she knows they are one of the few treats I can still enjoy without pain.  It is my neighbor who takes my child swimming because I can no longer get her to the pool.

·         It is my father and stepmother who stay away and do not come to visit, even though they want to see me, because I find it too difficult to entertain visitors these days.  It is their efforts to support me from afar in the ways I ask rather than in the ways they think support should be offered.  It is the sacrifice they make financially to help me with my ever-mounting medical bills.  It is their willingness to travel to see their grandchild because I cannot bring her to them.  It is the message my dad leaves on my answering machine: “I know you don’t feel like talking, but I wanted you to know that I love you, and I am praying for you.  I pray for you all the time.” 

·         It is my sister-in-law who picks up my child from school on the days my husband cannot, because she knows it will be a significant burden on me to get to the school in the late afternoon when I am generally feeling my worst.  It is that same sister-in-law who stays for my child’s birthday party when I cannot attend and helps serve the children there, monitor their activities, and clean up afterward.  It is her thoughtfulness when she takes picture and videos at such events so that I can see what I would otherwise have missed.

·         It is my sister and brother-in-law who sit out in the rain at a concert in which they have little interest so that I can enjoy a very rare evening out.  It is that same couple who travel over an hour, pick me up to take me to that concert because I cannot safely drive, and who then try to refrain from eating dinner in front of me because they do not want to hurt me by consuming foods that I can longer have.  It is their attempts to make every moment I am out feel like the best moment in the world, to treat me as if I am the center of attention and the most significant person in the room.  It is their focus on meeting my needs, making me comfortable, and pushing aside their own desires to accommodate my wishes.  It is their willingness to spend far too much money, money they could have used for events of their own choosing, on overpriced tickets – and their willingness to then leave that high-priced concert at the drop of a hat, without even a moment’s hesitation, should I start to feel bad.  It is my best friend offering up his motorcycle so that I can arrive “in style” at that concert.

·         It is my 12-year-old daughter who sacrifices so much and rarely complains, though I know it must break her heart to give up the many “little things” other children take for granted.  It is her graceful and compassionate response when she hears that I will miss yet another choir performance, play, Tae Kwon Do tournament, or birthday party: “It’s okay, Mommy.  You can’t help it if you are sick.”  It is hearing her exuberantly tell her aunt, “Today was such a good day!  Mommy took me shopping and we were able to stay out a whole two hours!”  It is feeling her little hand caressing my back and hearing her soothing voice tell me she hopes this is a good day for me. It is this child holding her tongue when I am screaming at her for no reason at all other than my pain getting the best of me.  It is this beautiful, precious little being patiently explaining to teachers, friends, and everyone else who will listen that her mother has gastroparesis and this means that her mother cannot eat normally or do the things that many parents do.  It is my child participating in every “Go Green” event and campaign we hold – and doing so with enthusiasm.  It is hearing her pray for healing and comfort for me and for all of those in my GP community every single night without fail.  It is her holding me in high esteem despite my many shortcomings.

·         It is my husband who has not left me despite the truly horrendous trials I have put him through.  It is him rising every day, performing the household chores that I can no longer complete, taking care of our child’s many needs, acting as chauffeur, maid, butler and general caretaker.  It is him shopping at an ungodly number of stores, trying to find that one perfect, organic, gluten-free, non-GMO food that I am just sure I will be able to eat this time, and then watching silently when I throw it across the room in frustration.  It is him tolerating the days when I decide that “I am not going to eat or drink another thing because it only prolongs my agony,” and knowing that I do not really mean this.  It is him telling me that I am beautiful, though anyone can clearly see the truth in the dark circles under my eyes and in the skeletal reflection in my mirror.  It is his willingness to listen to endless rants about incompetent doctors, the “evil” politicians and media members who will not help us, the lack of research and treatments, and the details of the many projects I want to undertake for my GP community.  It is him patiently enduring my screaming fits of anger and apologizing even when he has done nothing wrong.  It is him holding onto me when I am crying and on the verge of throwing in the towel, despite the fact that I have likely just scolded him, pushed him away, and blamed him for every horrible thing that has ever happened to me.  It is him understanding that pain and lack of nutrition make me crazy and irrational.  It is him believing that I love him even when I tell him that I despise the world and everything in it – including him.  It is him accompanying me to every doctor’s appointment so that they might take my illness (and my description of its effects) seriously.  It is him rubbing my shoulders and feet at the end of a long day’s work, despite his own fatigue, so that I can relax and sleep well.  It is him whispering to our child in the other room, “You have to try to understand and forgive Mommy.  She’s just tired and sick.  She doesn’t mean it.”  It is him praying with our child for my healing, strength, and peace.  It is his never-wavering confidence that we can continue to get up every morning and do what is necessary to get through the day.

There may have been a time when I placed great value on a day – on the gifts I received on that day – but that time has long since passed.  Love is not based on seemingly romantic gestures, gifts, and evenings out.  It is the day to day thoughtfulness one displays and the commitment to enduring anything life throws your way.  It is standing by each other, offering support and comfort in difficult times, and placing the wants and needs of your loved one before your own.  I am eternally grateful for the love I am shown by those around me on a daily basis.  This Valentine’s Day, I want you all to know how much I love you, too.


  1. Indeed it is Ms Melissa! I find it amazing that you and at times some of us have these moments of true brilliance of clarity! This writing is one of your best! It is even more remarkable because I know how difficult thought can be! But you have a light and purpose Ms Melissa! Thank you, the enlightenment is hard, heartbreaking, but so inspiring as well.

    1. Thank you, Ms. Deb! I am so thankful to have you as a friend and fellow advocate. So grateful for all you do for our gastroparesis community!