It's Been a Long Journey

I'm coming up on my 15 year anniversary with my chronic pain, and I can't seem to figure out what the appropriate gift is. One year, Tylenol with Codeine. Five years, Vicodin. 15 years, Morphine? It's a messed up relationship. Someone should come up with a handbook or something. (Please recognize one of the gifts with condition being sarcasm, and my writing is saturated in it today.)

Living with pain of this magnitude is like being married to a ball and chain around my ankle in a world made of water. I've never been in such a smothering, unsatisfying, high maintenance, codependent and sexually unsatisfying relationship with anyone or anything worse than this chronic condition. It is as smothering as a pillow over my face twenty-four hours a day.

I can't go anywhere without it. I try anything and everything to satisfy it, but it's insatiable. I'm running out of ideas of how to calm its sharp and throbbing tempers. For as exhausted as he makes me, I'd at least like to be getting some good sex out of the relationship. And yes, it is a "he". Call me sexist, but that's how I see it. When it's in your body, you can diagnose its sex. For now, I'm the proud parent of this physiological nightmare.

There are a million sad stories I could tell about my chronic pain, but sometimes the sadness is so heavy, it would break my heart to give it words. Sometimes using humor deflects some of the shrapnel from this war. I guess I look at this 15-year voyage as a war of sorts. My words are my weapons, used not to destroy but to connect with pained peers.

I have never battled anything as powerful, as isolating, as painful, as defeating and as humiliating. It's hard to explain WHY chronic pain can create shame but it does. That phenomena is for another blog.

I may not be able to cure the disease but I can offer up hope and humor. This post is obviously more playful, but at the heart of all my posts is a desire to make a difference. I WILL keep writing, if for no other reason than to make at least one person feel less lonesome on her agonizing journey.

May those of you who know this turmoil find some peace in your hearts. And may those of you bearing witness know that just being there can be the greatest gift. Unconditional love is the greatest healer.

No Such Thing as a Simple Suicide

This morning I read some heartbreaking news about a man who attended my same high school and college, someone I used to crush on every time I saw the bright blue sparkle of his eyes as I passed him in the hall. He was smart, athletic and a self-made millionaire, but most importantly he was a precious member of his family. Andrew Stern committed suicide this past Sunday in California. He had been amicably separated from his wife, model Katie Cleary, and they were in the midst of divorcing. Despite marital issues,  his family was aware of Andrew's longtime struggle with depression (http://www.people.com/article/katie-cleary-model-husband-andrew-stern-suicide-deal-or-no-deal-americas-next-top-model-leonardo-dicaprio.) My heart goes out to his loved ones.

The community I grew up in wasn't the kind that wanted to discuss the mental struggles of its youth. While Andrew died at 40, most adults with depression likely suffer from its beginning in their youth. Researchers are now finding that depression begins in childhood or adolescence (http://www.webmd.com/depression/features/depression-often-starts-in-childhood.) Since graduating, I've gotten to know various classmates who I always thought were just super shy, but in truth, it was a cover for depression that they simply didn't feel comfortable discussing. I hear their stories, and it breaks my heart because I think how much we each needed a friend back then.

I waltzed my own dance with depression and anxiety from a young age, not getting help until I was in college. It's hard to describe, but our community was almost too perfect from within to declare mental defects. I certainly couldn't wear the scarlet D on my lapel while living and going to school there. It was easier to hide it, although the more I hid it, the more it overwhelmed me. By the time I got help, I felt like a snowball that had started the size of a marble, and ended up the size of a boulder.

My hometown was a great place to grow up, just so long as you didn't admit any imperfections while doing so. It was almost as though the perfection of the community had an inverse effect on the youth. The harder one tried to be perfect, the harder it was not to crumble under the pressure. It became obvious that things weren't so perfect when one of our guidance counselors committed suicide my sophomore year. It was like the air was made out of shards of glass, and with every step our hearts and souls were cut and scratched, bleeding sorrow everywhere. I believe she meant it to be a simple way out of whatever emotional and physical turmoil she was living in, but there is NO such thing as a simple suicide.

I learned this first hand on May 1999 when I was on the front porch of my grandma's home. My Uncle Don, also living there, walked into his bedroom and swallowed a .357 magnum. It took his life in the blink of an eye, but the pain that remained continues to haunt my family up until this day. Don was so lost and desperate that a gunshot must have seemed a very instantaneous way to exit the life he obviously hated living. What he may or may not have realized was that there is never a true moment of peace for those left behind. Family and friends may try to wax on that they've found peace in the years that have passed, but it's never that simple. There is always a memory, a smell, a picture of that person no longer living, and it's an eternal puzzle why they left. It's never simple.

It's too bad that mental illness carries with it such a negative stigma, because it's truly no different than any other illness. I write this, though, knowing that I don't take all the medication I'm supposed to take for my own depression and anxiety. There's something about it that I can't describe. It's as if I'm trying to prove to the Universe that I can get by without it. Sort of like training wheels! I want to ride my bike without training wheels, even if I do end up riding into a parked car.

Mental illness is like one of those fun houses at the Fair. It looks like a house on the outside, but everything inside is distorted, and it's subjectively screwed up to the person going through it. Medication and therapy can help the distortion, but the person has to be open to it. My uncle wasn't open to it, and I'm pretty sure that's why he's in an urn rather than at family gatherings. I say this after admitting my own aversion to it taking all my medicine, but somehow we need to work as a community, as a culture so that those who struggle emotionally can get the help they need rather than the grave they think they want.

I pray that the family of Andrew Stern finds comfort in each other and in the memory of the great man their son was during his years here on Earth. May God bless them all in their time of healing.

Time is the Healer

Ever since having my colostomy reversed in January, I’ve had significant upper abdominal pain. At times it takes my breath away. I was referred to a surgeon to get his input. However, rather than getting a game plan, I was instead given a prognosis with only time as my healer. The pain I’ve been experiencing is a result of nerves being held hostage by scar tissue in my abdomen. He said it could take years for the pain to subside. Tears in my eyes, I thanked the surgeon, and my mom and I walked to the car where I dissolved into sobs.

It wasn’t that I wanted surgery. I’ve had more surgeries than jobs, and with every operation the danger and damage go up. Last summer was the perfect example. I went in for gastrointestinal surgery, came through it just fine until late the next day when I went into septic shock, ended up in the ICU, required another operation where they found my bowel had been perforated, 8 inches of my intestines had to be removed, and I was left with a colostomy for six months, which were easily the most difficult six months of my life.

The thought of living for years at the mercy of scar tissue and damaged nerves was rather unsettling.  My mind wandered as I watched the clouds go by on the ride home. I thought how we’re all sort of like scar tissue. We each have our war wounds from life’s ups and downs. And there are those horrible pains that seem to stick to our hearts, breaking them into little pieces like shards of glass that chink together every step we take.

Whatever the cause, we all have those parts of our history that are like raw nerves, electrocuting us with memories of our worst nightmares. We’ve all got scars. Some are just more visible than others. We can be immobilized by our scars, or we can move forward, allowing them to teach us rather than deter us.

No matter how wounded, God is always there to help us deal with our pain. No life is completely free of damaging experiences.  All of us have scar tissue. We walk around with hurts that have built up over the years, pain from different experiences remaining in our hearts and minds.   We’re all scarred individuals just trying to get by doing the best we can in a scary world. That makes us human. The more scars we have, the more scarred we are, the more life we’ve lived.

The hardest part of living with pain is having the patience and understanding that everything that happens does so for a reason. We have to put our trust in the divine and know that God’s will shall be done in the time and manner in which He sees fit. I am hopeful that one day sooner than later my pain shall subside. I have that hope for you, too.

A Lady with Grace

After 15 years of pain and despair, fear and frenzy, I have come to the realization that true healing can’t begin until I realized and acknowledged that my suffering has been my greatest gift. I could spend my lifetime in agony, wallowing in all the heartache my pain has brought me. Or I can see it as the greatest teaching from the Divine, wherever and whatever that is.

 

How better to learn empathy than to have suffered? How better to learn gratitude than to have lost moments upon moments, years upon years of life and relationships that passed me by? Once I release all the suffering, my soul is able to elevate to a whole new awareness of life and the beauty in everything, because it truly is ALL beautiful.

The heaviness of affliction is more than a thousand tons of rock, and the soul cannot fight for freedom from Earthly pain when it is shackled to misery. We can choose our mindsets, even in the face of great misfortune. It goes beyond the cup being half full. I want to swim in the water of my cup overflowing. I want to embrace MY “normal” and find ways to overcome each challenge that comes my way.

 

Imagine yourself in the middle of an intersection. You can choose to lay down and allow yourself to be run over, or you can go with the traffic and live a life with direction. God chose me for this path. He planted my feet deep in the soil of it all. And while I may be dirty and tired and a bit lost at times, I rejoice in just BEING on this amazing voyage of self-discovery and enlightenment.  My heartache of the past is my future grace, and OHHHH how grateful I am.

 

Gabriel's Story

I had been ill with chronic pancreatitis for just three years when I discovered I was pregnant. It was such a shock, and at first I wasn’t sure I wanted to have the baby. My body had already been through so much, and I wasn’t sure I could physically carry a child. Not to mention the fact that I wasn’t married, although the baby’s father and I were still best friends. Financially, though, I really wasn’t in an ideal situation to become a mother. But a few weird signs left me with no other desire than to have my child. There was never a day in my life that I didn’t want to be a mother. God had just chosen a set of interesting circumstances for me to experience my first pregnancy.

 

CHASING MOTHERHOOD

What kind of mother forgets her child; leaves him behind with all the pain that her hollow womb could hold? I think about him every day, but it’s something cerebral, almost like a dream, as if he never truly had a life. It’s only this time of year that I remember that beating heart within my belly that I wanted with all my heart and soul. I remember saying goodnight to him every night, and good morning to him every day, and speaking to him every moment in between almost like a lullaby, to keep him company and never let him feel alone. He was just a little man; a little man that wanted a chance that I ultimately couldn’t provide.

I heard his heartbeat just days before. My brother and I stuffed ourselves into the tiny exam room, and the doctor used her magic wand to find his life deep within me. It’s a sound I miss, a sound I wish I had recorded because now it’s hard to recall. I’ve never wanted anything more than to hold his warm life in my arms, to feel his heart in sync with mine.

Even in the most inadequate circumstances, I believed my love would give us everything we needed. It was my maternal currency, the lira of motherhood. And while it seemed so natural at the time, I now see all the flaws in the past that somehow made it all “for the best”. It’s a bittersweet reality to acknowledge that, with my medical ups and downs, especially with my chronic pain, I would not have made a very good mother.

Perhaps the cruelest part of my post-partum experience was when my milk came in. There I was with all this milk and no child to feed. My eyes blew up with tears as my breasts became engorged with milk, and my hormones took my thoughts all the way to the notion of wanting to go and find homeless babies to feed. My body was doing exactly what it was supposed to do under circumstances that were a nightmare.

I make myself believe that everything happens for a reason, because the contrary would break my already broken heart. Even though almost a decade has passed, I still hear him calling me, and I’d be lying to say that on many days I don’t long to join him. But my journey here is not finished, and I believe God had a greater plan to this whole design. 

Every challenge I meet, I now have a special guardian angel to accompany and protect me. Eventually, I will be with him. As I walk this path, he speaks to me in whispers, telling me it will all be okay. He gives me hope when I have none. He is my light in the dark; my son, Gabriel.

Live and love with hope in your heart and mind! With gratitude, Jessica

Starving from Pain

I remember this feeling; the groaning, gnawing growl from deep within my stomach. It feels like my body is digesting itself. The thought of nourishment is no longer soothing, but rather symbiotic with pain.  My body screams when even a bite of food is taken. It cramps and squeezes as food moves through me. It's as though my body is rejecting it.

"I know you," I say to this pain. "Where are you from?" And down the rabbit hole I go to a time I've forced forgetting. What feels like eons ago, I remember when my mind repelled anything that went in my mouth. It was like a mentally controlled moat that guarded the castle door. It was only open to the bare essentials. Food was the enemy but not the culprit.

A month before I left for college, I told my mom that I'd had an eating disorder for almost three years. I would get through the day with a plain bagel and some carrot sticks or a slice of cheese. If I ate more than that, I would purge. There was never any binging. I never ate quarts of ice cream and bags of chips and cookies. It was perhaps a few crackers or a small bowl of plain pasta. That would send me to the bathroom quickly. And my mother never knew.

My mom was understandably upset and concerned, and she threatened to keep me out of college for awhile. But I was as open as I knew how to be, and I PROMISED to her that I would never purge again. It shouldn't have been a hard promise to keep, but it was. I recall the day I broke it. I was getting by just eating small bowls of cereal for breakfast, lunch and dinner. I was going to the rec center daily, sometimes going twice just to take a second aerobics class to burn off my cereal. It was after an aerobics class that I went to the dining hall craving pasta, and it was Italian night. So as a splurge, I ordered a bowl of plain pasta. What could that hurt?

I wasn't even back to the dorm when I felt the pasta like a lead ball in my stomach. I felt out of control, and I needed to get rid of it to get my control back.  The next thing I remember was kneeling on the floor of the bathroom down the hall from my dorm room, my one arm cradling the seat of the toilet as the other hand was jammed down my throat to rid myself of the pasta. As I stared down to the blue tiled floor, I realized that I had just broken a promise to my mom, a promise that shouldn't have been hard to keep. I called the campus counseling center that day and began what turned out to be the most freeing and productive years of self-discovery in private counseling.

Exactly what triggered my eating disorder is hard to say. As in any family, there are problems. It's hard when things look fine and perfect on the outside, yet on the inside there are deeper issues that fester. The one thing that truly sent me reeling was when, at 13, I started babysitting for a Bexley couple with two great kids. I loved the mom, too! However, her husband (I'll call him Tom) soon became a concern.

It started with mild flirting and inappropriate comments, but soon the trips to and from their home turned into downright sexual molestation. Tom would put his hand on my knee and move it up to my inner thigh, as I would sit paralyzed and scared. He was at least 350 pounds, so I didn't have much of a chance to fight back.

Out of love for the kids, I didn't say anything for over two years until the night he pulled off the road, grabbed my head with one hand, pulling it towards his disgusting breath while his hand found its way to my crotch. I screamed and pleaded with him to stop, and for some reason, he did. I finally told my mom what was happening. She took me to my guidance counselor, who wanted to call the police, but I didn't want to hurt the wife and kids so I internalized it. Starving myself was my way of coping. I wanted control of a life that had turned into chaos, so I used control over food to make up for it.

Crawling back out of the rabbit hole, this pain I'm dealing with now is beyond my control. I don't eat because the pain it causes is almost unbearable. It mirrors that feeling of my body digesting itself, only now the problem is on the inside. Somewhere my internal architecture is askew. When I eat, my pulse races, my insides feel twisted and tangled, and I feel faint. I'm not eating because I can't. It wasn't until a few days ago that I realized the similarity between the feelings in my stomach now and then. One way or another, I always seem to end up starving from pain.

I suppose it's my inability to eat now that drives me to want to help other women who don't eat just like I didn't back then; back when NOT eating was my addiction. Had I known the physical damage my behavior could have caused, I might have found a different way to cope. Had I known that my life would someday revolve around doctors and hospitals, symptoms and illness, I might have realized how precious my health truly was. I want to use my voice to pass that message on; that physical health is a gift, and it is never too early to appreciate it.

Finding Love in Pain

There is a certain craziness to dealing with any type of chronic illness, especially when one of the primary symptoms is excruciating physical pain. Being a patient isn't just like a trip for the annual check-up. That's merely fitting a tiny physical assessment into the normal flow of life. Being a patient entails fitting a little life into the crazy, random roller coaster that is the product of being held accountable to a disease. I haven't worked a traditional job for almost ten years, but I have never worked as hard or felt as exhausted as I have over the past decade.

I sought answers in four states, in half a dozen hospitals before the blame was taken off of my "crazy" female mind and directed at the actual culprit which was my pancreas. It took a lot of strength not to allow myself to crumble under all the pain, physical and emotional; to not become the "crazy" female whose pain lived only in her mind.

It will be fifteen years this coming autumn since I first became ill. Early on, doctors struggled to find cause of my pain, and the validity of my symptoms were under examination, I felt powerless. My life was crumbling around me as my physical limitations brought my life to a complete halt. I had the support of my family in Columbus, but they were seven hours away, so I sought support closer to my home in Alexandria. I was able to find a local Unity Church of Christianity, the church my mom was raised in, the one I would frequent with my precious Nana. I always felt at home there. So while my life was disintegrating into chaos, I sought that feeling of home in the local Unity, and with that first visit I opened a treasure chest of support. In truth, it was my weakness that led me to the greatest source of strength.

The minister, Dee Sweeny, took an instant interest in my health plight. She became my guardian angel. Anytime I went into the hospital, Dee would find her way to my bedside. When I was discharged and sent home time upon time, she would show up with hot tea and sit with me for hours until she felt assured I could rest.  She infused my life with so much love, and not just her own. Dee taught me that, through adversity, I could be moved to a closer, more intimate relationship with God.  Contrary to how I felt emotionally, Dee told me I was rich with God's love, and that with every ounce of pain, God matched it with gallons upon gallons of divine love.

Through prayer and meditation, I found that God was like a constant blood transfusion of love. He was within me and around me during some of the most uncertain and scary years of my life. There were moments when I doubted God's mere existence, because I was suffering so. When I look back, it is clear to me that my illness has been a gift, hard as that is for some to grasp. It was an opportunity for me to form a relationship with a power higher than myself.

I have always believed in God, but with my illness, I've gotten to know God in a way that I didn't know was possible. Every thought is a tiny prayer, a small part of an ongoing conversation with the Divine. On my loneliest days, I can still able to feel God's embrace. No matter what challenges, God will be there to love and support you in good times and bad, in sickness and in health. When I learned to invest in THAT truth rather than dwelling on feeling punished by my disease, my heart and mind were elevated to a higher level. There will be times when hope is hard to find, but divine love is free.