Tuesday, April 21, 2015

#HAWMC Challenge Day 21: Reflection

Note: The prompt for today was to reflect on our chronic illness journey.  As I just marked my one-year anniversary with gastroparesis a short while ago, I believe it is appropriate to share my thoughts from that day.  This was indeed a day of reflection.  My only additional remark here is that I have far more hope now than I once had.  I hope for a cure, certainly, but more than that, I have hope that regardless of the number of days I am granted on this earth, and no matter what the circumstances of those days, I will pass them with grace, purpose, and gratitude.  I hope and wish the same for all of you.


Please forgive me if I am a little "off" today. I don't usually remember dates; I am actually really bad about that. So, I did not think I would remember this "anniversary." That is pretty foolish of me. Try as I might, I cannot forget that it was one year ago today that I was diagnosed with gastroparesis - and my life instantly changed forever. Seems like 10 years ago. It is funny; this year has been both harrowing and uplifting.

I know there might be some right now who are thinking, "Oh, no, she's talking about her illness again. That's all she ever does." But how can I not? It is my constant companion. The physical and mental aspects of this disease are unimaginably bad, and I do not believe anyone who has not experienced it first-hand can truly understand. Physically, I battle with much pain, exhaustion, and weakness. Mentally, there is isolation, anxiety, stress, and depression to fight. And it never goes away. There is not one single day where I wake up and do not have to face this. There is never a break, not even for a moment. Every morning I wake up and know that though I am hungry, if I eat, agony will follow. Every day I try to balance my hunger and nutritional needs against that pain. We live in a world centered around food, so that is tough. It is everywhere. It is on my television and on my radio; it is on billboards and in magazine ads; it is at every social gathering. It is in my own house. Normal people eat. They eat three entire meals a day - but those of us with GP cannot. And every time I take a bite, I feel like a complete failure.

I sometimes fall into the trap of believing that because I occasionally give in to my food cravings, and take a mere bite of something, I am weak. How can something that is a basic need for every human being cause me such agony? Why do I feel like I have somehow failed because I want what every person on the planet wants? It is not a case of eating too much and then regretting it; it is taking a bite - a single bite - and then wishing I could take it back. Food is a basic need, and yet I am denied it by this cruel disease. I likewise fall into the trap of believing that because I cannot always keep up with daily chores, or work a full-time job, I am lazy. But I know people who suffer from this disease who are too weak physically to even make it through their daily hygiene routine. Many truly expend every ounce of energy they have just trying to fight the pain and nausea. Are we weak? Do we lack willpower? In what world? Why should any of us ever have to feel that way? In reality, we are stronger than most. Do you know how much effort it takes to resist food when you are literally starving? Do you know how physically exhausting it is to try to tackle even the most basic chores when you have been fighting nausea and pain all day? That takes a special kind of willpower and strength that (I hope) most will never experience. We are truly warriors.

Beyond the physical aspects, there is much mental anguish associated with a chronic illness such as this. I am mostly confined to my home and can hardly ever leave. I "joke" that the only time I go out is to medical appointments - and yet, that is the truth. I do not travel or "vacation"; I miss my child's events; and I endure much guilt because I cannot attend even the most important family functions. But I have it better than most. Many people I know no longer have any family support, and their friends have deserted them because they cannot participate in the social activities they once did. Yet, when we mention this, when we talk about feeling alone and isolated, we are labeled "whiners" and "complainers" who are simply seeking pity. Again I ask: In what world? We are incredibly strong to be able to endure this day upon day - and still have the grit to wake up and do it all over again the next.

This disease is merciless, and it has made for a rough year. But as difficult as it has been - still is - it has not been entirely darkness and gloom. When I first came home from the hospital (with no clue as to how difficult things would be), I was forced to accept assistance from family and friends. I had no choice; I simply could not manage daily life without them. This was a new experience for me. I do not like being "helped." I like to think of myself as self-sufficient. But this acceptance of help had a strange effect on me. It softened me. It forced me to experience humility and dependence on a level previously unknown to me. It made me view my life and the people in it quite differently, and it marked the first step down a very different path for me, the beginning of many changes.

I have never told anyone this, but a short while after being diagnosed, I wrote letters to my family members and close friends, telling them goodbye. For the first few awful weeks after being diagnosed, I was unable to imagine I would still be alive at the end of a year's time; truly, I did not think I would last a few months. Seemingly overnight, I was thrust into facing just how fragile life is. This realization, coupled with the kindness shown to me by family and friends, made it possible for me to finally express my deepest feelings for the people in my life. For the first time, I understood that they needed to know the part they had played in my life. I needed them to know, before I left this world, that they had made a difference; that they had meant something to me; that their kindness and love had mattered in my life. Writing those letters was very difficult, but necessary. To this day, I have been unable to write these letters to my husband and my child, the two people who matter most to me in this world. Maybe in time, I will grow brave enough, but today, I still cannot face the thought of leaving them.

In any case, the letters were another step in my journey down this difficult path. But something even more eventful, more eye-opening, happened after I wrote those letters. Somehow (through God's grace, I believe), it occurred to me that I should try to find others who might be experiencing the same illness. I was confined to my home, and so I was limited, but I thought perhaps I could find others online. I did -- and what a world these support groups have opened up to me! They have truly saved my life.

I have gained much knowledge about my illness from support groups, of course, but I have gained far more. They have given me the courage to share my personal story in a very public way, which has helped me immensely. It has shown me that I do not need to hide. I can open up to others and the world will not end. I have received support, caring, and kindness on a level I never knew existed. I have made friendships that will last a lifetime. The people I have met in this "virtual" world have shown me more commitment, dedication, and acceptance than I could have imagined. Because of this otherwise wretched disease, I have met beautiful people, and I have opened up to them and others in my life in ways I previously thought impossible. That is a very good thing.

And that is not the only thing I have gained this past year. Over the course of this journey, I have developed a passion and purpose in life that I never even knew I had been missing. I have seen unimaginable suffering and need. My eyes have been opened to it. I am often overwhelmed with compassion and concern for the people I have met. They have touched me deeply, and I want to help.

This is a tough anniversary for me. I have mixed emotions about it. I am sick; I am not getting better; and I know I must face this devastating disease every day for the rest of my life, however long that may be. But it is a good life - one worth living, one worth fighting for. And there are people in it who matter, who count on me, and who love me. This gives me hope and strength to go on. It gets me through each day.

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