I wrote in a post yesterday morning: “A few days ago, my doctor asked me what I eat in a typical day, and I had no answer. I just sat there – because the answer really is, ‘Nothing.’ I am so tired of starving. I am so tired of the pain and of seeing my friends go through this. I want a normal day, just one, just a break… but it is never there. And it likely never will be again.” That is a difficult truth to face, but one that I must if I am to cope with this illness. My world is contracting, and I can choose to either hold tightly to the things I still have, appreciate them, and spend every precious moment cherishing them, or I can elect to feel like I did yesterday – embrace the pain, loss, heartache, and grief and allow them to steal away the moments that remain.
I am not normally one to dwell on how I wish things were or how they used to be. But yesterday? Yesterday was a rare exception. I am not sure what set me off. I think perhaps it was a picture of my daughter and me together at an event from a couple of years ago. Or maybe it was watching her play basketball in our driveway and realizing that she was not the same small child I had once observed. I am not positive, but what I am certain of is that something put me in a reflective and brooding mood – and things went downhill from there.
I permitted myself, for a moment, to think about the friends I have lost, the family members who no longer call, the many times I have sat alone while others have gathered together, the isolation that being homebound has brought, and the immense world that moves on around me and without me. I allowed myself to experience all the physical pain and the sheer agony of trying to get through each day without food. I chose to feel, really feel, the loss I have endured. I did not distract myself. I did not pursue alternate actions or thoughts, and I did not change my perspective as I usually will myself to do. I practiced none of the techniques I know to be beneficial. Instead, I sulked, pitied myself, and mourned the passing of my old life.
Since the day of my diagnosis with gastroparesis, I have tried to accept and make the best of my circumstances. I am not an optimist nor a pessimist; I am a realist, and I believe in doing what I can with what I have. No point in dwelling on what might have been, right? Further, I have, for the most part, come to understand that though my life will not be exactly what I once envisioned, it still has value and meaning. I am an advocate and an administrator in several online support groups, and I find that helping others aids me in shifting my focus away from my own problems and maladies. It helps me to feel that I am making a difference, albeit small, in the lives of others and in bringing awareness to this cruel disease. My efforts in this area have given me purpose – and that is generally enough to get me through the roughest of the long days. But yesterday it struck me just how small my world has become, and it made me wonder how much more it can and will diminish.
As I looked at the photo of my daughter and I visiting with the survivors of the USS Indianapolis who had graced us with their presence in downtown Indianapolis, I remembered how it felt to be there that day. It was a good day. I used to relish book signings, trips to museums, watching movies at the theater, dining in restaurants, visiting relatives, attending concerts and sporting events, and a whole host of other happenings. I used to have a life outside the walls of my home. But those days are long gone and are likely not coming back. Nowadays, I am fortunate if I make it to my medical appointments.
As my daughter made basket after basket while I watched through the window, clinging to the heating pad covering my stomach and abdomen, I recalled how I used to play “Horse” with her when she was smaller and was reminded of the leisurely walks we once took through the neighborhood. I thought of our trip to the ocean from several years back, the ocean that I love more than any place in the world, the ocean that I will likely never see again. I remembered the times we visited the zoo and sat by the pond eating a picnic meal, and I reflected on how much I miss not just those outings but the food itself. (It has been more than two years since I have consumed anything close to a meal, and it has been many months since I have been able to take more than a couple of bites of even soft foods.)
As I sipped my Ensure, I thought of sitting with my husband at an ice-cream shop shortly before my child was born and experiencing the strange realization that it would likely be the last time we would make such an outing without our child. I thought of our many vacations, visits to festivals and fairs, walks alone, anniversary dinners, and holiday gatherings with family. I recalled the elaborate desserts I used to make him when I was trying to perfect my newly-found baking skills just a few years ago – a hobby that holds not quite so much delight for me now. I recollected the ballroom dancing classes I forced him to take and the joy they ended up bringing us. I permitted myself to reminisce about every single moment, and I grieved over the fact that I failed to realize then that I would never get these times back. I guess that all this time I have held out hope that these things would someday happen again; but yesterday, when I took a good hard look at how this disease has already progressed, I suppose it hit me that this will surely never be.
As a family, we have made the necessary adjustments. We do what we can to enjoy our time together at home, and my husband attends (solo) the events that require an appearance. We have learned to cherish the small moments and to be thankful that we can rely on each other for love and support. On rare occasions, we still manage to delight in a brief excursion (although I pay for such outings in pain for many days afterward), and we relish those times. But yesterday, there was the nagging… the memories flooding my mind.
I was reminded of my child’s conversation with a relative a short while ago: “Today was such a good day! Mommy took me shopping and we were able to stay out a whole two hours!” I thought of the many times she has stood behind me, gently caressing my back, whispering, “Are you okay, Mommy? Is this a bad day?” I heard the echoes of her sweet voice comforting me, her graceful and compassionate response to being told that I would have to miss yet another choir performance, play, Tae Kwon Do tournament, or birthday party: “It’s okay, Mommy. I understand. You can’t help it if you don’t feel well. Daddy will videotape it.” I replayed in my mind all the moments when I have heard her patiently explain to teachers, friends, and everyone else who has inquired a thousand times, that her mother has gastroparesis and this means her mother cannot do the things that many parents do. I further recalled how this beautiful, precious little being has participated in every “Go Green” event and campaign we have ever held – and has done so with enthusiasm. All the nights I have heard her pray for healing and comfort for me and for all of those in my GP community came to mind as well. I considered how difficult it has likely been for her over the past couple of years to hold her tongue when I have screamed at her for no reason at all other than my pain getting the best of me. I contemplated how significantly this illness must be impacting her well-being and happiness, and while I admire her fortitude, I mourned her loss of a “normal” life.
I thought of my husband who comes home exhausted every night from work and still must help care for this beautiful child and attend to the chores that have piled up during the day – tasks that I could easily complete a year ago. I remembered the many episodes where I have watched him “hide” from me as he eats so that he will not intensify my torture. I played over the moments in my mind – him patiently enduring my screaming fits of anger and apologizing even when he has done nothing wrong; 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; 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. I was reminded of the many evenings he has rubbed my shoulders and feet, despite his own fatigue, so that I can relax and sleep well. I thought of how often I have heard him whisper a prayer with our child in the other room, for my healing, strength, and peace.
Yesterday, I dwelled on all we have lost, all we have borne, the abnormality and horror of it all, the “smallness” of my world – and it was nearly unbearable. I tried to focus on the good that has come out of all of this, and there is much: friendships, compassion, understanding, wisdom, passion, spiritual blessings, and more – but there was still the nagging. What if my world, our world, diminishes even more? What will happen when my daughter graduates or gets married, and I am left alone? How can I endure her absence when I have so few treasures left? (I have often wondered if I will be around to witness the significant events in her life, given my current deteriorating state of health, but I rarely think about what will happen if I do survive that long.) And then truly awful thoughts came. What if my husband gets sick – or decides this burden is too much and abandons us? What if he passes away? Who will care for us? Who will be my support system then? What if I am truly on my own one day? What if, instead of dying early, I actually live to see those days? Yesterday, those uncertainties and fears were too much, too much.
But today I am in a different state of mind. Today, I grasp that I cannot remain in my dark thoughts. Today, I am focusing on other truths and approaching the moments with a fresh perspective. I have a devoted husband; an affectionate, trusting child who admires and adores me; compassionate, supportive friends and loved ones; groups and projects that give my life meaning and purpose; and a loving God who still watches over me and directs my path for good. I have beautiful, precious memories that no one can ever take from me. I have a family that knows the true meaning of love and appreciates every moment we have been granted. Most days, I have hope, however dim, for a brighter future – if not for me, then for the millions who follow me and share in this cruel diagnosis.
Today, I choose this life, whatever bit of it I still have left. I choose purpose and willpower. I choose faith and hope and the struggle to overcome the hardships and obstacles. I choose to advocate and to support others on this same difficult path, and I choose the fight that goes along with this journey. I choose to pursue the thoughts, feelings, techniques, and actions that I know will get me through the day. I will embrace the good for as long as I can and recede deeper into the center of the shrinking circle of my life until I can retreat no more. It has been a good life. It is still a good life – if I choose for it to be.