Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*d*

Chasing a Diagnosis

We sat on her family room couch sorting through her photos. Occasionally one of us would stop and show the other a photo, laughing or reminiscing about the story behind it. I felt like a kid again, sitting in my childhood home reliving old and happy memories with my mom. Then she paused, her fingers resting on a photo. The smile had vanished from her face. “What? What is it?” I asked. I noticed her demeanor had changed.

“I don’t remember having this taken,” she said in a somber voice. I leaned over to look at the photo she still had between her fingers. It was a photo of her at the hospital two years ago after a major surgery called a Whipple Procedure. She looked at me as if to question if she was really the one in the photograph.

“That’s you,” I assured her. “You looked awful,” I said, trying to hold back my tears. “I am glad you don’t remember.”

“Me too,” she said as she slid the picture from her fingers into my hand.

I sat and studied the photo for what seemed to be an eternity. She was sitting upright in a chair next to the bed in her hospital room, a pillow draped over her lap. The hospital gown barely covered all that was coming out around her. A tube was coming out of her nose and one was also coming out of her neck. Looking at the photo seemed to leave my mom in some sort of disbelief. She had no recollection of the days following this surgery and although the photo looked like her, she acted as if she had just seen a ghost. I knew it was my mom in the photo, but I too thought she looked like a shell of the woman I have always known. Her pain was so intense after this surgery that I can only describe the look in her eyes as empty pain. It’s the kind of pain that demands complete submission to it. And there she was in a photograph, a momento of pain.

She and I had a haunting glimpse of a time two years ago we would both prefer to forget. It was the first time I seriously doubted whether or not my mom would make it through a surgery. This surgery was different than the ones she’s had previously. This was a rare procedure that required a skilled surgeon and would not guarantee her a better future or survival. When faced with such uncertainty, I thought about the holidays we had shared over the last year and wondered if we had truly enjoyed those moments together. I didn’t want to think about having the next holiday without her. It also made me think about my own selfishness and the times I didn’t grasp what life has been like for her. As long as I can remember my mom has been battling an invisible enemy. My mom was born in 1953 and in 2008 she finally found out what has been causing her life-long pain. She has a hard to detect birth defect called Pancreas Divism (an abnormality of the ducts of the pancreas) and Spincter of Oddi Dysfunction (a dysfunction of the muscle(s) that help control the flow of pancreatic juices). This and the treatment of which caused Chronic Pancreatitis. These abnormalities cause the syptoms she has felt since childhood: pain in the upper right quadrant of the abdomen or in the back, epigastric pain (especially after meals), abdominal swelling, nausea and/or vomiting. All of these symptoms during her lifetime were mistaken for various other ailments, so mom spent 55 years of her life undiagnosed and suffering.

“I’m sorry,” I whispered from under my tears.

“About what?” she asked, sounding surprised.

“For not being more supportive,” I continued. “I can’t imagine what it was like to be in so much pain, especially when so many people stopped believing you.”

“I had to keep going. I knew something was wrong, but I hate that it took so long to find out what it was.”

Her problems began in childhood. She had unexplained pain that grew more intense into adulthood. Because she so desperately sought an answer, she has had a staggering number of surgeries in her lifetime. Some surgeries to fix specific problems and others were an attempt to find the source of the returning pain. There is no doubt it was hard for her to continue to fight for her own health when others had given up.

She hugged me and we sat silently, maybe pondering the moments we lost. Her story has touched me more deeply in the last year. I was recently diagnosed with Rheumatoid Arthritis and I too will most likely be dealing with a lifetime of chronic pain. The difference between her story and mine is defined by one word: diagnosis. When my blood was drawn last year, I didn’t want a diagnosis but once I got it, I was validated. My pain wasn’t an illusion and I could begin treatment. My mom had spent most of her adult life chasing a diagnosis.

So, why was it so hard for her to chase a diagnosis? The hospital and medical bills became a rotating door for my mom even though she and my dad were already struggling financially. Money wasn’t the only reason she was discouraged from returning to the hospital or seeking out another specialist. She’d frequently hear comments like, “If they can’t find anything wrong, then what is it?” or, “You don’t look sick.” And all the while she would feel discouraged and invalidated for her suffering. Years of hearing other’s doubt made her doubt herself and that led to depression.

“How have you done it over the years?” I asked. “How did you live with chronic pain, especially when you had no idea what was wrong? Weren’t you angry?”

“It isn’t easy,” she explained. “Getting angry about it wouldn’t have helped. I knew my body and I did what I had to do. I have also learned not to hide from my depression.”

When my mom finally had diagnosis in hand, the only treatment available was risky and didn’t guarantee a better quality of life. The first procedure landed her in the hospital with acute pancreatitis. I visited her during this acute flare in 2008. Her pain was so intense that she was given large doses of pain medications and food was held until her pancreatic levels decreased. When I saw her, she was out of her head and desperate for food. Every year since 2008 is speckled with memories that she and I would rather forget. Awful memories where my mom and I began having an unspoken understanding about her health and death. These moments would shame the people that would doubt her illness when they’d say, “You don’t look sick,” doubt her pain because she wasn’t constantly folded over from it, or those who were perplexed because they couldn’t see her disability with their eyes.

“Mom,” I said, “you are amazing. I can only hope to have half of your strength.”

“I’m not any stronger or braver than you.”

I heard what she said but doubted the truth in it. I didn’t have the same difficulty before I had my answers. There are many people, like my mom, who are chasing a diagnosis. They spend every day in real pain and desperate for answers. They persevere even if they have to do it alone. My mom did what she knew was right despite adversity. Fighting the unknown is one of the bravest battles one can face. She isn’t the only undiagnosed individual fighting for answers so don’t judge someone based on outside appearances or speculation. Offer support because even when someone is fighting the unknown, they are still fighting.

*d*

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Why "You don't look sick" isn't a good thing to say.

Signs of acute pancreatitis:

Sudden intense pain in the middle of the upper abdomen and the pain may radiate to the back. This pain may begin 12-24 hours after a large meal.

Fever, nausea, vomiting.

Cammy skin or rapid pulse.

Tenderness or distention of the abdomen.

Signs of chronic pancreatitis:

Abdominal Pain that may radiate to the back or chest that is intense and long lasting. It may be intermittent or persistent.

Stools that are excessively foul or bulky.

Nausea, vomiting or abdominal distention

Weight loss because of malabsorbtion of foods

Development of diabetes if pancreas becomes damaged.

Source: webmd.com

Unfinished

It has been nearly six months since my maternal grandfather passed away. It has taken this long for me to process the shock of his death. The grieving process is long for me because it takes me a long time to grasp the reality of a death. In the past six years I have adapted to my son’s diagnosis by detaching myself from emotions when terrible events occur, including death. I guess it is a type of defense mechanism for me. I put my head down, push forward and deal with the emotional consequences later. When my emotions finally catch up with me, it takes me a while to recoup. Several events this month have me thinking about death.

People don’t like to talk about death. It’s scary. Death is a good reason I cling so hard to my faith. I believe in something that gives purpose to all things, even something as deviating as death but it’s still difficult to handle. As much as I believe it to be a natural part of life, there is no perfect way to grieve. It took two years after my uncle’s death for the reality of it to set in and I am now feeling it six months after my grandfather’s passing. It usually takes something to set off the chain reaction of grief in me. This time it was taking my grandmother to run errands. I drove her van (something my grandfather only did) and upon pulling out of the garage, I noticed my grandfather’s neatly organized garage. He had just started to put all of his nuts and bolts in little jars. He had hung several items on the wall for easy access and neatly arranged all of his tools on the shelf. He and my grandmother sold their home in Florida and moved everything back here last spring. My grandfather was in the process of merging his dual collection of items when he passed away. My grandfather was meticulous, a trait in which I can relate. I love seeing how he took pride in what little he had by caring about how it was placed. As I sat in their van, I realized he would not be able to finish organizing his garage. It would remain unfinished. His life was finished but now he had unfinished work. My grandfather didn’t leave work unfinished. That is what death is good at, leaving life unfinished.

With everyone so readily connected to one another, death is something  we can’t sweep under the rug and ignore.  I checked in on a woman who has been posting updates about a friend of hers who had recently been diagnosed with a rare form of cancer. Her friend had been sedated and clinging to life. She ended up passing away. She is in her early fifties and has two grown children. She lost her fight with a sudden disease that robbed her of her life and possibly some meaningful final moments with her family. Recently I received a newsletter from the alliance associated with my son’s disease and it’s cover story was about a 17 year-old girl who just lost her fight with the same incurable disease. It is scary and humbling. Life surrounds us with death. If it isn’t before us, it is around us. Sometimes death is one of the strongest reminders to enjoy life.

Several weeks ago my son had a seizure that stopped his breathing. This is the first time this has happened. I became so worried that I began researching how to help finance a seizure monitor for his bed and I am trying to get him on a list to receive a new epilepsy wrist monitor coming out in the spring. The concern was there prior to this incident but this made me rehash all the fears I had when he was first diagnosed. I felt like I did before I learned how to build up a wall to guard my emotions. I once again feared that a seizure will take him from me while we slept or if he were to seize away from home, I wouldn’t be there if he were to cry for his mommy. These and many other fears could paralyze my life. Just like a preoccupation with death, it could control my living but these thoughts have done something profound. Facing the fear of death and the mortality of those I love has made me want to fulfill my life. Without having to look death in the face, I am certain I would not be so appreciative of life. At the end of the day, I don’t think about the housework I have to do or what I need to plan for supper the next day, I worry if I put my best effort into making today the best it can be for my family. I think about how I can try harder to better myself for my family with anticipation. I try to remind myself that no one is guaranteed a tomorrow so if I am fortunate enough to open my eyes in the morning, I need to make it count. If tomorrow didn’t come for me, what can I show for it besides a list of unfinished projects? My goal is to find a way to live with our hindrances and find a way to live beyond anticipation. Can I live in manner in which my kids will know I fought for happiness? Can I teach them to strive to do something everyday to make life count for something more? Or will I hand over my life and my son’s life to disease and hoist up the white flag until death? Despite what made-up fantasy has us believe, death is harsh and unbiased. It doesn’t care if my son hasn’t had a chance to experience life, if I have four children that need me, or if we need our best friend. In the end, life is a blur of memories. Choose to make those mirrors into the past count. Don’t wait until disease or death rattles you awake. Wake up and live now. Finish the projects that have meaning and appreciate the outcome. Unlike my grandfather’s unfinished garage, our lives don’t have invoke sadness. Those unfinished projects he left may never be finished since no one could finish them as he had planned but we can appreciate what he did accomplish. I can use what I have learned from him and put the finishing touches on my life, even if it is just for today. Everything is worth the meticulous work, even my unfinished self.

*d*

September and the End of Life

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The red horizon was pressing up against the darkening blue sky. Wispy clouds floated along the cool air. Soon the grass would cool beneath bare feet. Now was the best time to experience the crisp air.

He would never experience another day like this. It was beautiful outside his hosptial window. It was September. My swollen eyes gazed drearily out his window and I imagined myself walking in the courtyard below, my bare feet making circles in the grass and my face toward the sky. The sun would warm my face and dry my tears. I would close my eyes and see the red of light and breathe in as I did many times on the hill outside his house.

I spent many summer days playing outside my grandparent’s house.  I would scuffle up and down the hill littered with stones along the edge of their house and down to the small pool my grandfather purchased for my grandmother. I would frequently put my hot feet into the cold water and my body would involuntarily pull back. I would dance my feet lightly on the water’s surface as I took in my surroundings. This was one of my favorite places to be. A creek ran through the back of the property,  while numerous trees, bushes and flowering plants, mostly Mother’s Day gifts to my grandma, lined the edge of a field. Well manicured grass extended in both directions and behind me stood their little house on the very top of a hill. They sold the house the year of my high school graduation and it has since gone into disrepair. Nevertheless, some of the best memories of childhood still reside there.

I couldn’t return there or escape to the space below so I stared across the sprawling garden and over to the stained glass windows of the chapel. I closed my eyes and wondered if I should enter and fall to my knees before the alter. I would kneel until my knees hurt and my back ached if God would just take this day away. How could something so terrible happen on a day a vision to the contrary? Could I get him away from his bed and out to the garden below? I wanted the sun to warm his face. I wanted him to feel the grass and experience more than the space between the hospital walls before he would no longer have the opportunity.  Maybe I could ask to move his bed next to the window. With multiple lines feeding his veins I knew it was impossible. His fingers were turning blue and his blood pressure was slowly dropping.

I had never before experienced the anticipation of death. It was awful and cruel. I told myself to be brave. I would stand at the window or wander down the hall in a futile attempt to collect myself and accept what was happening. I tried to fool myself into thinking I had been through plenty of hardship and could be an example of strength. My eyes would flit around the shocked faces surrounding his bed and I accepted the weakness we all shared. Every face was distraught and terrified. Many could hardly speak. I did not want to accept it but I pleaded for the day to end. My mind looped, “I can’t do this.” Then I would try to rationalize my thoughts so I could quickly return to his bedside. We had spent several hours watching him try desperately to acknowledge our presence despite his own agony. We knew the inevitable finish to this normally beautiful day was creeping closer with every tick of the clock. He stopped trying to speak and stopped opening his eyes. The clock grew louder and it became difficult to ignore amidst the deafening silence.

The awareness of death was strange knowledge. My grandmother paced the halls and nervously fidgeted. She could hardly stand to stay in the room and watch over sixty years of her life slip away. We prayed,  shared stories, and told him we would be okay. My mom tenderly cared for her father and only briefly left his side. She undoubtedly suppressed her own fear to make sure his hands were held, he was comfortable, and aware of her love. I wondered how someone who always took up such a large part of my life could be reduced to a small space aloft a hospital bed. We sat in a circle surrounding his bed, holding his hands, touching his feet, and crying until my mom raised her head from his chest and sad, “He’s gone.” It felt like we all exhaled simultaneously in disbelief and our breath lingered stale in the room. It was over and so was more than eighty years of a meaningful life. A part of me also died with my grandfather as happens with all those who share our lives. It was sad to think that his memories, experiences, and wisdom just died with him.

We stayed for an hour. My grandma started calling loved ones shortly after his passing. Her busy hands didn’t make a happy heart but it helped her deal with her new reality. I kissed his forehead and held his hand while he was still warm. His head was moist from fever. I told him that I loved him and hoped he would somehow hear me. This was one of the most defining losses in my life.

I have lost others I have loved. My uncle (my mom’s brother) died unexpectedly three years prior as did my paternal grandfather, but I was very close to he and my grandmother. I spent a great deal of time at their home and it became a place of refuge for me. That comfort was now broken and so was my grandma.

The day he died was gorgeous. I often try to imagine him rising above his bed and lingering in that courtyard outside his window. Maybe he went into the chapel and prayed for all of us still lingering beside his broken body. Maybe in our sadness he was freed and as joyful as he had ever been. Death is an awful truth none of us can avoid or understand until we are looking out to the broken faces surrounding our own deathbed. Maybe I too will be released from life in a hospital bed like my grandpa or at home like my uncle but it really doesn’t matter. What matters is who will surround us when it is time. I would be so blessed to pass like my grandpa. It was awful for those who joined him on his last day but he did not face it alone. The love of family gathered with him on that beautiful September day and remained to his earthly end. My grandma recently told me that she is starting to forget things about my grandpa. I told her it is more important to remember how he made her feel. It is hard to forget the warmth of a loved one.

This was the first time I had been at another’s passing. On the drive to the hospital I had no doubt what I would witness and I knew it would change me. I returned home that night eager to embrace my family. I had an earnest desire to enjoy those I love because my time with my grandpa wasn’t long enough. I wanted to keep everyone within my reach but it didn’t last. I also began to forget and a part of me has yet to accept. It will eventually sink in and I will inescapably be in the throes of grief. For now, I am reminding myself of how fast a life ended on that September day. Today I try to enjoy what time I have been given. I am sure the morning he walked into the hospital for surgery, he didn’t realize he would never leave. He had come in the doors and felt the last breeze on his face, slept his last night in his own bed, and took the last steps to a completion of life. He was a faithful man and I know there was more for him beyond his death but he didn’t want to die. Most people don’t. There is always more to do and another life to touch. There are more gorgeous days to see and grass begging to be tread upon. It is time for me to stop looking out the window and take in life.

*d*