My Gratitude

Yesterday wasn't just Thanksgiving. It was also my nephew's birthday. I had intended to write and post our story yesterday, but unfortunately I spent the evening in the ER and wasn't able to go to his birthday party. Prior to going to the hospital, I slept through Thanksgiving dinner, which is usually what happens AFTER the turkey. It was a backwards day, but I realized this morning that it happened exactly how it was supposed to be. I'll explain.

When Ethan was born, I was recovering from my fourth surgery in sixth months, and the open incision in my abdomen had barely healed. I was in a dark place. I had hoped to be at his birth, but a recent ER trip made it unsafe. I was able to go see him, though. I remember it like a dream. I was wearing my Miami University sweatshirt and black sweatpants. I felt numb going in, until I saw him, and my heart opened up.

I can't remember if I was able to hold him or not. I want to say I didn't, because there was concern about exposing him to my ER germs. But it didn't matter. I was in a trance. I had never loved anything or anyone more than I loved him at that moment. Keith and Sonja had given ALL of us a precious gift! And our journey had just begun.

When Ethan was over, and it would be time for him to nap or go to bed, he would make this little moaning sound. A cross between a Yoga Ohm and the sound I imagine a baby calf makes. He would never just lay down and go to sleep. He had to move. So I would walk with him in my arms, and I would make the moaning sound back to him. And eventually he would fall asleep with his head against my heart. They would call me the "Baby Whisperer".

As he grew up and the moan was no longer happening, it took more to get him to fall to sleep. So I made up a little lullaby in Spanish. It was repetitive and I probably conjugated a verb or few wrong from lack of practice, but it became the song that made him sleep.  I would sing it over and over, and eventually he would fall asleep. It would almost always get him to stop crying. There was even a time when my parents and Keith and Sonja were taking Ethan to meet family in Louisville, KY, and in the car he just started crying uncontrollably. So they called me on the phone with the speaker on, and I sang it to him, and it quickly soothed him back to sleep.

I've referenced in past posts that my health has been pretty horrible for the past fifteen years. Several pretty significant health issues occurred in his early years, and the only thing that gave me the will to live was that little soul. He was my North Star. When I felt lost or like I couldn't take anymore, I thought of him, and it pulled me through. I imagined the feeling of him in my arms when his body would be against my chest, hearing my heartbeat, and me feeling his, and it was like this force greater than my illness.

I've always believed in God, and these words are not meant to say that the Divine hasn't had an enormous meaning in my life. But Ethan gave me something that made me want to live. I would tap into the force that had linked us from the time he was born, and I could feel it pulling me back home. I lost my own son when I was six months pregnant, and that pain never goes away. But from the time Ethan was born, I loved him as though he was my own.

When Ethan started talking, I desperately wanted him to call me "Tia", which is aunt in Spanish. I was a Spanish major in college, so I thought it would be fun. One day, he just looked at me and said, "YaYa". And that became my name. We were buddies. As he grew up and started talking more, each moment was an adventure. He was busy, always building, playing with trucks, playing outside in the mud, in the trees, in anything that fell in your typical boy activities.

When he started really talking, it was non-stop entertainment. At the same time, though, I swear he could feel my absence when I would go into the hospital. Keith would have Ethan call and leave me messages on my cell so I could listen to them when I was there. There is a story from when Ethan was a little over 2 years old. Keith and Sonja brought him over for a family dinner. After eating, everyone was visiting while my mom was doing the dishes, and she heard this little pounding. She followed it to my bedroom door, which was closed, where Ethan had brought a few toys. He was pounding on my door and yelling, "YaYa, YaYa! Come out with me!"

It broke my heart, but at the same time I took it as a symbol of how close we were. We were buddies. There have been times over the years where I felt like my best friend was that little monkey. It was pure love; no anger, no arguing, no fear. Just unconditional love. In truth, he always seemed (and at times still does) to think I was his age. When he was around four, he told me, "YaYa, when we grow up, we can either have a taco stand or drive a garbage truck." I've always leaned to the former, but who knows.

When my second nephew, Eli, came along, the brothers were linked from the word go. Ethan has always been protective of his little brother. As an infant, Eli would fuss as babies do, and Ethan would sing him the Spanish lullaby. He knew the words by heart.  When Eli started talking and no one could understand him, Ethan would ask him to repeat it, and Ethan would serve as a little translator. It was precious. The two of them remind of Tom Sawyer and Huck Finn. They are everything to me.

Last year, I missed Ethan's birthday because I was still so sick from my surgeries. I was dealing with some horrible side effects, so there was no way I could go. That's why I was SO excited to go to his birthday yesterday. I was having so much trouble breathing and wheezing that my doctor said to go to the ER. I was so heartbroken to miss it.

He talks to me a lot about me being sick, and he just doesn't understand why YaYa isn't fixed already. I give him the best positive answer that I can when I tell him I am slowly but surely getting better. I hope it works for him. I say it to myself, too. Sometimes I believe it, sometimes not. But I have so much to live for. Not everyone is blessed with love like this.

So actually, being in the ER was were I was meant to be. I got the help I needed. He was so busy with his gifts that I doubt he even noticed that I wasn't there. From my gurney in the ER, where the frustrations of my health issues were overwhelming me, I had a thought. I am meant to get better. I hear that two year old banging on my door, asking me to come out to play. I have to be well enough to be on the other side of that door going forward. I have to be there when my now 7 year old nephew comes knocking, because I'm his YaYa. I can't imagine a greater purpose than that, and I could not be more grateful.

 

Te quiero, mi sobrino, Te quiero, mi amor! Te quiro, mi sobrino, Te quiero, mi amor. Nunca sera un tiempo cuando que no te quiera!

 

Happy Birthday, Ethan! I love you more than moon and stars!

The Tightrope

As many of my readers know, I had major abdominal surgery in September. It was my fourth surgery in thirteen months, and needless to say, I was a wee bit nervous. Third only to my love and faith in the Divine, and the unconditional love of my family and friends was my trust in my amazing surgeon, Dr. Steven Steinberg.  He operated on me in 2010, and my surgery was very complicated, but he did an amazing job repairing a huge hernia; one that no other doctor wanted to touch.

After a dangerous bowel obstruction this summer, Dr. Steinberg went into my abdomen to see what was causing my issues. I went into surgery shaking, but I came out feeling at peace with the world. My mom even commented on it. I looked serene, even with over 40 staples in my abdomen. I could feel divine love and healing flowing through my body, healing all of the parts of me that had broken for so long. I had faith and I had hope, and God did the rest.

As I've continued to heal from my September surgery, I've noticed that not only is the surgical pain healing, but the pain that the surgery was meant to correct is healing, too. It's not gone, and in truth, I've been told I'll likely never be completely out of pain. I prayed and prayed to get through surgery without any crazy complications like last summer's surgical debacle, and I made it through. So I have been praying and praying for my pain to ease, and it has healed enough to go significantly down on my pain medications. It's precious to be in less pain! What a gift!

The process of reducing pain meds can be a long and arduous process, and it can make even the most chipper person feel gloomy. This week was a very dark one as I've started feeling the negative effects of a process that I'm ecstatic to be in a position to go through. If surgery hadn't helped, I would have needed more of these medicines that are a great help, but huge hindrance at the same time. They may free you from some of the pain, but you pay a price. It's a prison, in truth, making many things impossible.  So I suppose you could say I'm breaking out of prison with the guidance of my doctor. It's time for my version of "The Shawshank Redemption".

Withdrawal can be demoralizing. Some of the side-effects are depression, anxiety, insomnia, and those are some of the tolerable ones. This week I took a big step down on my dose of one of my pain medications, and I took a big emotional step into a ditch of depression. I was too nauseous to do much of anything. In my mind, I was walking a tightrope. If I fell to either side, it was a drop back into the day to day numbness that kept my world in a haze. The alternative is to focus on walking the line on this gradual healing. Life changes from one day to the next, and all I can do is put one foot in front of another. I'm on a voyage to clarity and liberation.

I feel like my capacity for joy has been infinitely increased by my capacity for hurt. I find radiance in simple things that others might find insignificant. Love is even better on this side of illness. I feel so much more of myself to share now that I don't have to focus everything into coping with pain. It isn't gone, but it is SO much better. That's worth a celebration. Hell, it's worth a parade! When I feel frustrated, I remember that feeling of peace I experienced right after surgery, and I know THIS TOO SHALL PASS!

You Are My Sunshine

I've always been surrounded with love. I don't have any sisters, but I've been blessed with the most remarkable, sweet, ornery and loving brother. When I was around 5 years old, my mom's best friend since middle school and a friend from high school got married. When I was 7-ish, they had their first daughter, and a little sister was born. Angie was an angel in personality and appearance.

I still remember my first baby-sitting job was to sit and hold the bottle in Angie's mouth who was sitting in her little baby seat while her mom mowed the front lawn. I remember how it felt, what an honor it was to be trusted to hold the bottle in her perfectly pursed lips. I loved her so much (and still do!) Watching her here or there (under supervision) taught me to do what I always wanted to be someday. I was like a little mother, as my Nana would call me.

Not too many years later, her precious and spunky sister was born. Becky was feisty from the word go. By the time she was born, I was old enough to baby-sit (at least in those days.) In her early years, she couldn't say my name, and "Jessica" became "Gah-kah" (phonetically speaking.) As they grew up,  we would have "giggle parties", and "dance parties". I haven't had the occasion to see either of them dance, but if they suck at it, then it is ENTIRELY my fault. For whatever reason, back then they saw me as some sort of dance messiah, and I am riddled with the occasional worry that I may have stunted their dance growth. God willing, they've both had interventions and don't move like I did. We almost always had fun. They were a joy to watch!

When I went off to college (and it's still a mystery why their parents allowed this), their mom, Kathy, drove them to Oxford for Miami's little sibs' weekend. My brother was in high school and wasn't into it, so I had my two "sisters" and one of their friends come in for the weekend. God bless my roommate, because all five of us stayed in our dorm room. Becky was still young enough to give piggy-back rides, and there were always fun activities going on.  It was a precious experience filled with laughter and chatter, and they were all still in one piece when they were picked up. I think they came back my sophomore year (I'm too old to remember for sure.)

Our families have grown up together. They've seen me at about every stage of this fifteen year old illness, and I even missed Angie's wedding because of it. But I was there with her, even though in person, I wasn't. I've seen Angie's little boy over the years, and I see qualities of her at that age. I saw Becky get married, and she was a lovely bride. She and her husband moved to California for several years, and I loved hearing about what she was doing. I remembered when I moved to D.C. at about the same age, and how great it felt to get out of Ohio.

They are family.

It's been a rough week. Surgery helped my pain quite a bit, and I'm gratefully going down on some of my pain meds. The side effects are less than fun. To name just a few symptoms, there's the suck-your-soul-out depression, the infuriating insomnia coupled with atrotious anxiety. It's not quite a good time.

Yesterday, I just needed to get out of the house. My mom and I were just starting our voyage through the fruit and vegetable area at the grocery, when I see this glowing face and two big brown eyes that used to look right through to my soul when I would hold her bottle. It was Angie, all coordinated with a cute scarf and purse and coat.... all grown up. She came over and gave me a huge hug, which gave my soul one, too. We talked about her job, her little boy, which brought tears of joys to her eyes. She was a dynamic, beaming ray of light that lifted me right out of my funk. My little sister.

Who knew I could find so much sunshine in Kroger...

The Times I've Wished Away

There is a pattern I have begun to realize in myself that needs some work. Year after year of dealing with condition after condition, I have developed a habit to get me through whatever has plagued me at any given time. Each time I've been knocked down, I've prayed for the strength to get to a better place, physically, emotionally or spiritually (or all three.) I have found myself wishing away time, hoping that somewhere in the future, I would find myself feeling better. Then that time would come, and something else would happen. And once again, I would find myself wishing away time, hoping that sometime in the not so far future, I would find myself with less stress, less illness, less hopelessness; less whatever challenge was standing before me. 

While I realize that such thoughts are, in truth, very human, I have begun to look back at the overall fifteen years of illness and pain and wonder how many precious moments I have missed along the way, because I've been too busy wishing away time for something better. Perhaps if my health were more predictable, I wouldn't find myself doing this so often. I wouldn't be plagued by SO many episodes that hurt SO much. I wouldn't feel tortured by a pain that has had me on my knees, praying for it to pass.

However, my health issues have consistently put me in these situations, from hospitalizations, surgeries or long periods of pain. And whether it is normal or not, I've tossed many pennies into the proverbial wishing well with hope for the pain to stop, for healing to start and for time to pass so that I can start my life anew. I've spent so much of my life waiting for that moment when all the planets are perfectly aligned that I've missed more than my share of shooting stars on a long walk awaiting a perfect life that will never be.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               

There are no perfect moments awaiting our arrival, but rather there are many moments awaiting our minds' and hearts' desire and ability to make them as perfect and precious as we can.  Moments don't have to be perfect to be precious. I can't beat myself up for all the times I've wished away, but I can go forward and learn to see the positive things that surround me even if I am in the hospital or in pain.  I can be grateful that the past year of 4 surgeries, a colostomy, and a lot of pain is behind me. And when I flip that coin, it is only after going through this past year that has made even the most simple moments feel magical.

Whether we notice it or not, time races by. It certainly doesn't need any help to do that. So I will keep those wishes to myself, and allow it to pass by on its own. I'm just so grateful to be along for the ride!

Healing, Part 2

While I love this time of year and enjoy seeing my nephews in their costumes, Halloween haunts me in a way I can't escape. It represents an incident I wish I could forget, but I've not been successful.  I've built such a high wall around it that I've found it impossible to recover from. Like a festering wound, it has lived inside far too long. Telling this story will hopefully rid my soul of some of the poison.

There are things we must first let go in order to make room in our souls for positive, healing energy. I've been haunted by a Halloween from long ago.  The shame and guilt are so heavy it is sometimes hard to move. I laughed in God's face when I inadvertently, but absolutely pushed the envelope of life too far.  I was trying to flee from the pain, not from life. But the outcome was the same, and I have carried the guilt ever since.

It was Halloween 2003, and I was reeling from the loss of my son in my sixth month of pregnancy earlier that year, which was followed by the death of my Nana not even five months later. Losing a child and my spiritual touchstone in such a short time had me overwhelmed with grief. The heartache was bad enough, but tag on the anguish from the physical pain of my disease, and that's where you would find me, barely able to scrape my spirit up off the floor just to go through the motions of real life.

I left work early that day, because my pancreatic pain was giving me fits. I had been experiencing panic attacks and severe depression since losing my son (on top of a bad pancreatic flare), so on the way home I picked up my prescriptions for Xanex and Morphine. I went home and took the appropriate doses, but the panic, pain and depression weren't touched. I remember taking a second dose about a half hour later. And then another dose of both yet another half hour later.  I wasn't trying to end my life, I just wanted the pain to end. When the tears came that day, as they did every day, I remember crying from a place so deep within me, it felt like my heart might truly break. I couldn't take it. So I kept taking the pills, thinking that one more might make a difference.

By some miracle, my mom came home early that day and found me. What went on from there is lost in a memory I can't access. The next thing I recall was waking up briefly in the Emergency Room as charcoal was being pumped into my stomach. There was a doctor who asked me if I meant to hurt myself, and I remember nodding yes, even though it wasn't true. It was hard to communicate anything with a hose down my throat. I vaguely remember being a patient in the Mt. Carmel East observation unit, calling way too many people and saying way too much. I think my mom finally told them to take my phone away. What must have been a day or two later, I realized I was a patient in the psych ward of Mt. Carmel West.

 

How had I gotten there? I didn't want to die! I just wanted the pain to go away, mentally and physically.  Once I was released from the psyche ward, I returned home full of questions. How much had I taken? How many people knew? I was overwhelmed with guilt and shame.  The ordeal I had put my family through was unforgivable in my eyes. I was afraid to ask what happened in the hours I could no longer recall. My brother Keith was the only one I felt comfortable asking. I thought he would be honest.  As he started filling in the blanks, I became more and more aware of how far I had truly come to the verge of death.

When it all happened, my brother had counted my pills, figuring out how much I had taken in the span of about seven hours of time. The grand tally was: 40 Xanex, 50 Morphine. That's how much I had taken, and yet I'm still here to tell this story.  God has spoken to me via various life events, but this one ranks pretty high. I could easily have died from this unintentional overdose, but I hadn't. Someone thought I should be here, and I've been grateful ever since.                            

 The memory of that Halloween has haunted my memory for eleven years.  It was undeniably a defining event in my life, yet it goes against everything I have become.  Like a festering wound, it became glaringly clear to me in this past year that the story needed to be told so that I could finally be free of it.  I've never wanted to embrace life more, to enjoy the precious moments that happen in the blink of an eye.  This Halloween is about healing, especially about healing from old mistakes. In the grand scheme of things, my soul needs as much room as possible for positive, loving, healing energy.

I've apologized to my family for all this put them through, but I'll probably always feel some guilt about the scariest Halloween any of us ever experienced.  Somehow by sharing this, the shame is slipping away. Surely someone else out there in chronic pain can understand this, too. There may even be some who have gone through a similar experience. I chose to write this story as much for those who can relate as for myself. We all have times of weakness.  We all makes mistakes. That's what make us human, after all.

Healing, Part I

This time of year as darkness comes earlier and the shadows move through leaves that are constantly changing shades, I am reminded of the start of my disease. It is my favorite time of year because of the beautiful changes that occur, but the pain was not one of them. It invaded like an atomic bomb, and suddenly I didn't recognize my life. With every year, the pain intensified, and I didn't know how to survive. I woke up terrified of every hour and the pain it held. I would hope that the next hour would be better and would count the minutes until it's arrival, yet when it would arrive, the pain would be just as severe   Nothing could take it away, but I tried. Oh, how I tried. And how I failed.

There are two parts to healing from chronic illness. There is the strength it takes to propel yourself forward into a productive and purposeful life . And there is the strength it takes to forget and free yourself of all the shame, guilt, isolation and worthlessness you carried on your back up to this point. I can't explain why I've felt ashamed of and guilty for my disease, but I have. Those are common sentiments among individuals with chronic illness, not that it makes it any easier. In the past fifteen years, I can truly say this is the first time I don't feel shackled to those negative emotions. 

I don't believe there are more than a handful of people who know just how isolated I've been from the world, truly isolated. At the hospital, nurses and doctors alike make comments about how I don't look my age; that I look like a woman in my mid-20's rather than my late 30's. When you don't leave the house except to go to the doctor, your skin does benefit, but your spirit withers. And that's how I've felt. Like a withered flower who hasn't known HOW to be out in the world. And for many years, that hasn't mattered, because I've been too sick to do anything other than stay in bed. But I'm starting to blossom, from the inside.

Hope is a great source of life. It is to the spirit what the sun is to nature. It makes it come to life, makes it shine like a brilliant star. There is a light I feel from within that hasn't been there in fifteen years. I feel like I'm glowing. It's as though I'm coming back to life, physically, emotionally and spiritually. I am starting to feel well enough, and safe enough, to get out and about, to interact, to be ALIVE rather than just surviving. It's time to get out of my bubbleworld, even if it means that I will start looking my age. I've pulled the cord on the propeller, and I'm praying for a divine compass to show me what I'm meant to do and where I'm meant to go. But that's just part one of my healing. Going forward may prove easier than healing backwards. But I'm ready to try.

Ice Age

It was around this time of year in 1999 when the first whisperings of disease descended upon my life. I had only been in Washington, D.C. for about a year since moving there after college graduation. My boyfriend at the time and I had just settled into a precious Cape Cod rental house in Alexandria, VA. Between my man, my home, my job and my dog, I felt like a woman of the world, ready to make her mark.

When the pain came, it was like a full eclipse of the sun. My future was paralyzed. Hell, my present was paralyzed.  And that was before things got really bad; before pain, pain doctors and pain pills wrapped around me like vine on a trellis. Necessary evils in the face of a merciless disease.  It was a situational straight jacket.

Who knew life could change so quickly, absolutely, and inescapably? The hopeful 23-year old woman who was looking forward to a career and family was put on ice. I was very sick, and the life I had always dreamt of was the casualty. I came home to Columbus where family could care for me, and here I have remained. I fell into a long, dark night.

Every year when the air turns crisp and the leaves turn shades of crimson and gold, I can hear her voice calling on the wind. There hasn't been an ongoing career, a husband or a home of my own. And the only child I had died inside me. Never in a million years did that hopeful 23 year old young woman think that her battle was just beginning, nor think that it would endure 15 years and counting. Her voice sounds almost like a child longing to be fed. And I so wish I could feed her, but the milk she craves has long dried out. 

This fall is unfolding differently. There is a new voice I hear. It comes from within. The song is full of hope; hope for health and love. The pride and faith I've found as I've battled these wounds merge to form a sweet, yet strong melody. It rides on the wind and sings in the chimes that surround my home. I would be lying to say there aren't days I didn't wish I could start over with my youth and health intact, but I believe that makes me human.

When I think I want her back, I tell myself to look at my soul in a mirror. I am proud of what l I see. I am strong to have survived what I have. Getting sick sure as hell wasn't my choice, no matter how many doctors tried to tell me it was in my head before they figured it out. But I DID choose to survive it. I chose to remain hopeful, and that's no small feat. That young Jessica is gone, but a stronger, prouder, braver Jessica is in her place.

The disease and pain have put me through an ice age. Every part of the illness has carved into me like glaciers eroding rock to form what are now mountain ranges. True, much of the old me has been weathered away. But how can I deny the blessings I've been gifted. I've got mountain ranges ahead of me. Beautiful, glorious, living mountain ranges with infinite possibilities. I'm more than happy with that.