Thursday, July 31, 2014

One Year Ago, Part Two

I have a vague recollection of waking up in the surgical ICU after my emergency surgery. I was a bit surprised that I was alive, as my body felt beaten down and horribly sick. My parents and a family friend were by my side. As my mom recalls, "It just looked like you were in a coma."

My dad recalls watching my body as it inhaled and exhaled on the ventilator, and believing at certain times that it would be my last breath.  My pulse was high, and with every breath, my body rattled violently. I recall my mom describing the surgery. I had a colostomy and an open wound from just below my breast to my belly button, which was and still is a half inch left of where it was formerly located. I had nurses and doctors checking all kinds of stuff, surrounding me as they worked to make sure I was out of sepsis. It was all so much to absorb. I lost myself in the drugs and bad dreams that filled my head.

The next time I remember, the surgeon was next to me. He said that they had accidentally nicked the bowel during the first surgery, which sent me into septic shock. They had to remove 9 inches of my colon, thus the colostomy. I would have it for six months. I wasn't conscious enough to realize how devastating that news was. I had the open wound because of the septic tissue that had been removed. It was all so much to absorb. How would I ever recover?

The timing of this memory is unknown, but it happened as sure as I had surgery. I remember a pair of medical interns trying to start an IV in my wrist. The pain was overwhelming, so I did what I always do when I'm in pain, and that is pulling myself up and away from the pain. I crawled up to the ceiling, just to wait for the torture to stop.

As I hovered, I recall a white light enveloping me. There was peace in my heart. It was as real as I am writing this today. My son, my Nana and my Uncle Rusty were there, among other angels. My pain was so real and horrific, I wasn't sure I wanted to live. I remember almost pleading with them to let me die. I didn't want to live like this, in pain, anymore. I was discouraged and told that my time here on Earth wasn't finished, and that I had more to achieve in life. It was hard to choose the physical pain over eternal peace.

It was my moment of clarity; my choice of worlds, and I chose the harder one.  And what makes the experience most amazing is that it doesn’t matter that no one saw my light but me, because it was MY miracle! For as horrible as the entire experience was, it was the defining experience of my life. There were plenty of times after being released from the SICU, and then the hospital, and then the private rehabilitation hospital (I was too sick to go home), when I could have given up on hope, and almost did. 

But I didn't. THAT is my miracle. If, as I believe, something good can come from something horrible, my miracle came from the horrible outcome of the first surgery. It's not something I want to repeat, but it something I celebrate!

Miracles are the wishing on a star moments in life. The times when we are so downtrodden that we need our fairy godmothers to wave their magic wands, and it actually works. And what makes them so awesome is that they transform us, either on the inside or outside, and nobody knows why. They don’t see the stardust glistening in our bodies, minds and souls. It’s about transformation in times of great turmoil and need. Miracles allow us to start anew.

I glow with my miracles. Since my conversation with my angels in the light I remember so clearly, I have been transformed.  I have people tell me that they see the true Jessica again. There isn’t the haze of escape that used to cloud my eyes. This is not to say that my miracle was, nor is, easy. The road since then has been uphill. I could very easily drown in the haze again. But here’s another thing about miracles. When your prayers or wishes or pleas (however you chose to label them) are granted, you can’t turn them down. When you get another shot at life, on whatever level, you must be grateful and move forward. You must fight the good fight, because it may not come again.

Wednesday, July 30, 2014

One Year Ago, Part One

A year ago today, I had a surgery that was going to open up my occluded esophagus that was causing me to aspirate food in my lungs. It was a serious surgery, but I came through it. I remember waking up in recovery just fine. And I recall getting up the next day and walking with a occupational therapist around the entire floor. I was feeling OK. My pain was controlled. I felt no need for concern.

Then I remember a weird feeling coming over me. From years of illness, I was (and still am) very in tune with my body. It was as though I was shutting down. The next thing I recall was talking to my mom on the phone. "Mom, something is really wrong."

My next memory was of the Medical ICU. The tiny room was filled with medical staff, and everyone was in charge of something different. I had one person taking my blood pressure over and over again. It was 50/25. My oxygen saturation was in the 80's and declining. I kept asking for my mom. I was in and out of consciousness.

I remember waking up on a ventilator. I've been on one several times, but it never makes it easy to wake up with a tube down your throat and taped around your mouth for stability. You learn very quickly to talk with your hands, with your eyes, with pen and paper if they bring it to you. I was still in an out of consciousness, and it felt like my body was failing me.

Next time I woke up, I remember seeing my mom and dad just outside the vestibule. My mom and I locked eyes, and the deep connection we've always had drew us close, and we began to cry. The timing may be off, as I was in and out of consciousness, but the next thing I knew, my surgeon was next to me saying they needed to go back in. I had become septic and my entire body was shutting down. The surgeons needed to see what was happening inside.

At about this time, I caught my mother's eye. We were twelve feet apart, but our eyes pulled us closer. The two of us locked eyes, tears streaming. The love communicated in that stare was so intense, it was an overwhelming comfort and a great sadness. I truly felt in my heart that it was the last time I would see her in this world, and our journey up to that moment had been so entwined, I could feel my heart start to break as I held her gaze.

In those moments, it was as if it was just she and I in the room, and all the precious memories we had shared for the past 36 years were suddenly on a little picture show in my head. Everything we'd ever shared was communicated through our eyes. It was precious and magnificent. I couldn't weep on the ventilator, but my body moved with my tears.

I remember feeling, as she and I kept staring at each other as I was rolled away to a second surgery, that I wouldn't be coming back. I wanted to freeze the moment, with all our shared memories. I didn't want to lose them. I grabbed her hand as I was wheeled away. We looked in each other's eye and it was as if each memory had been communicated. Then it was just the look of  goodbye. I only had my eyes. They gave Mom the overwhelming, unconditional love she was due.

Now it was time for a miracle. I fearfully let them cut me back open. Our bodies are amazing yet fragile when something is out of place. I prayed so hard that I would be healed and most of all that I would be back with my mom, alive and well and laughing. As I was wheeled into another operation room, I discovered my tears hadn't stopped. By the time they moved me to the surgical table, my anxiety was off the chart. I wanted surgery to be over, and me to be back at home.

I awoke in another world....


Friday, July 25, 2014

All You Need is Love

Living with chronic pain transforms one's life. There isn't an aspect that isn't touched by this new entity that tears you down one cell at a time. It's like a personal hostile takeover. Rather than being the caterpillar that evolves into the butterfly, it's almost as if you're a butterfly who is reduced back to being a caterpillar. And with every year, you feel more and more knocked down by the unseen pain no doctor seems able to find or fix.

You find yourself desperately trying to keep your head above water in a medical community that lacks the knowledge and doctors to handle the suffering. It resonates in my soul, as if we're all singing the same notes but not being heard because there is no song to unite us. What are we if only one "la" in an opera of pain, only to fall on the deaf vault of medical gridlock. Pain is a force that can smother your dreams like water can a fire. To live with chronic pain, it isn't necessary to stop dreaming, but rather to train yourself to walk upon the flames.

However, hope awaits. Your spirit can soar despite the depths to which the pain has pushed you into a grave.  You are not dead until your soul stops hoping. Until then, believe in yourself, and God will be the mother's milk that will slowly feed you as you heal. If you are not religious, find something consistent and supportive in your life and hold on to it for dear life.

Love your body for its endurance and strength, especially during its darkest hours. Be grateful for the vessel that has carried you through rain and shine. Love your spirit for the courage, faith and dedication it has committed to a path that has not been easy to follow. Love life for gifting you the amazingly unique path under your footsteps. And most of all, thank God for the limitless opportunities to grow as an individual, and for the love HE wrapped you in during the times it felt you might not come through.

Thank Him even for the illness that plagues you, as without it, you wouldn’t be the infinitely strong, extraordinarily positive, extremely wise, tremendously empathetic individual you are today. You CAN change the World through your struggles. God’s angels await to accompany you as they push you forward lovingly, earnestly, hopefully, gratefully and faithfully. It’s ALL about love. May your cup runneth over.

Thursday, July 24, 2014


All of the great wars have been fought in the name of religion. For centuries, this has remained true. From the great Christian crusaders to soldiers manning cannons, people have died in the name of a cause, and ultimately they felt driven by the strength of their faith.  My illness has given me my faith. It is my cross to bear, and I consider myself as much a crusader as Joan of Arc who has heard a summons whispered in her ear to fulfill a certain calling.
My whisper didn’t come on any traditional battlefield or holy land. It infiltrated my spirit in one of the many experiences I lay writhing in pain, praying to God to either put me out of this misery or to grant me the courage to fight. If I was to stay, I needed strength to use the oncoming circumstances to find grace and humility. I wanted to journey forward to change the system for others with chronic pain. This silent killer knows no boundaries or age; pain is merciless.
For a long time, I thought the pain would surely kill me before disease ever did. But it hasn't yet. With every hospitalization, surgery, infection and illness, I grow more passionate about getting well enough to fight the backward system and to help those who have no hope.

Pain is the great isolator. Oftentimes, its victims battle in silence. When the pain is too bad to bear, I retreat into myself. But God whispers for me to stand back up and journey forward, as there are so many people suffering.

So I march on, using my words as my weapons to reach those who suffer and those who treat the suffering. The medical establishment has PLENTY of room for improvement when it comes to treating those with pain. My pain is my enemy and my inspiration! With faith I continue to fight. It's never too late to make a difference.

Monday, July 21, 2014

A Reason to Hope

For as many times as I have been knocked down by my pain or respiratory issues, there are two little people that inspire me to get back up time and time again. I have two precious nephews who give me a reason to hope for healing, because to leave them would break my heart. Ethan and Eli, my brother and Sonja's boys, might as well be my own for as much as I love them. I would give my life for them, and I will strive to heal if it means having one more moment, one more day in their presence. 

When I lost my son Gabriel and soon after found out I could not have kids of my own, my heart was broken. Being a mother was the one thing I knew I wanted to be from the time I could play with dolls. It was the one thing I knew I could do well. I was elated to find out I would be a YaYa for the first time. Ethan came into the world at a very hard time in my life. I was recovering from a series of botched surgeries and a major infection as a result of them. It was like I had been living under a dark cloud, and when Ethan arrived it was as if the sun shined through. He was and is precious.

One of the great sorrows in my life is that Ethan has had to grow up watching YaYa be sick. We've had our own language about it. He would ask question about why YaYa wasn't around, why she was in the "hobstible", why she was in bed so much. We have called my health issues "icky bugs" that are deep inside my body. He will ask why they weren't going away, why the doctors can't "fix" me. I hated that even a morsel of his innocent world was poisoned with thoughts about YaYa being sick. I hated him seeing me that way.

When Eli arrived, there were suddenly two little rascels with very big hearts. He and Ethan were so close, and it has been a pleasure watching them become friends rather than just brothers. But Eli could sense it, too. He has seen more than his share of me sick. I wish I could disguise it all, but that's not reality. So he, too, will ask about YaYa's "icky bugs". There is a mix of curiousity and concern with every inquiry. I try to be simple and honest. Time will tell if that's a success.

This recent bowel obstruction made all of my worries come to a head. My mom had just arrived home with my nephews in tow. My legs had gone into spasms, and I couldn't walk. An ambulance was called. I was in too much pain to speak. As I was being taken out of my house on a stretcher, my nephews were in the courtyard just watching. I saw their faces, but I couldn't even utter a "hello" or "I love you". I have always said that I NEVER want the boys to see me in the hospital, but seeing me on a stretcher, unable to speak and soothe them was easily a second runner up.

Since my hospitalization, I had seen Eli several times, but not Ethan. I was worried that he was perhaps afraid. On Saturday, Keith brought the boys over, and Eli came walking right in. Ethan hesitated at the door, unsure if he wanted to come to my open arms or go the other way. He finally came over to sit with me, and when I told him I had missed him, he asked, "YaYa, did you see me that day that you went in the ambulance?"

My heart was breaking. "Yes, sweetheart, I saw you, but I was too sick to say anything."

He looked pensive."Your icky bugs are on the inside, right? I can't get them. They won't make me sick? "

"Right. YaYa's icky bugs are from a long time ago. Sort of like when you skin your knee, and you get a scar. YaYa has a lot of old scars inside, and sometimes they hurt. There is NOTHING you can catch." He seemed content with that.

The older they get, the more they notice. I try so hard to be a fun YaYa, but there are times when my body can't keep up with my spirit. One of my greatest concerns is that someday, their memories of me and our times together will be of the sickness and not the love and fun. In my heart, I hope and pray that the latter will be true. Yet I can't help but feel sad that their exposure to my health issues has left a smudge on their untarnished world. Not that I had choice, but I think it's a natural instinct to want to protect the innocent.

 To me, Ethan and Eli are the definition of joy! I am my greatest self in their presence. Keith and Sonja brought the loves of my life into the world! The gratitude I feel to be their YaYa is infinite. When I feel lost, they are the lighthouse that guides me home. Those boys are my reason to believe in miracles.

Saturday, July 19, 2014

Attitude over Pain

At the dawn of my health issues, never in a million years did I think they would still be monopolizing my life almost fifteen years down the road. With every year, a little bit more of my spirit as been  whittled away by the physical and emotional effects of pain, and yet I am always being told how strong I am. People say, "I don't think I could do it" or "I could never deal with what you do". It makes me laugh to myself, as there really isn't any other choice. Sink or swim. We don't really get to pick the illnesses we're given, but we CAN pick the attitudes we have while surviving them.

For all the pain I have in my life, I have so much more love that it keeps me from giving up. It's like a reservoir of water for a long journey through a desert. No matter what you are trying to overcome, love trumps adversity. It's one of those things they should teach you in school, right up there with how to balance your check book.  It gives you a leg up on whatever you are trying to overcome. Even in the bleakest times of your life, even when the pain makes you feel like you’re being apart at the seams,  love is like the magic thread that sews you back together.  

I can remember times when my hopelessness felt like I was standing on a cliff overlooking nothing but sharp rocks and dark seas. There were times when I came pretty close to falling onto the rocks below. The love of my family and friends was the rope that pulled me back from that ledge.  I can face whatever may come so long as I have the love of those close to me, and so that I can return the love I am given.  I believe that having a purpose in life gives you a reason to push forward no matter how great your issue may be. It's a reason to wake up every day. And the thing I do best is loving the people in my life. It gives me incredible joy and peace.

A lot of different things go into the healing process, but love is the main ingredient. It does things that Western medicine (and Eastern for that matter) can't do. If I didn’t have this much love in my life, I think the pain would kill me; I think the pain would win. Love is like a booster shot that gives you a leg up when you feel like you can’t climb any higher.  If you find yourself lost, just follow the love and you'll find yourself home. And by home, I'm not talking about a structure. In the span of your life, you may live in a dozen different houses, but there will be one home that will follow you everywhere.


Friday, July 18, 2014

Greatest Good

This week marked eleven years that my precious Nana has been gone. While I'm incredibly grateful she is no longer in pain, there is still a huge hole in my heart that selfishly wishes she was still here. Not a day passes that I don't think of her. Ours was a special relationship from the very first moment. She would often tell the story of our first meeting, not long after my birth, when she held me in her arms, and I gazed up into her eyes as if to say, "I know you!" And based upon the connection we continued to share the rest of her life, I have no doubt that we had known each other long before this lifetime.

There is no memory of the exact moment she began sharing her spirituality sprinkled with  unconventional religious beliefs, as it seems as though every moment of my life was infused with them. It was as if she knew that someday I would need a deep, unwavering belief in something greater than myself to get me through the physical and emotional pains of loss and disease. She was my spiritual touchstone and one of my greatest teachers.

Nana was well ahead of her time in many ways. She embraced the great thinkers such as Gary Zukov ("The Seat of the Soul"), Deepak Chopra, Dr. Wayne Dyer, Elizabeth Kubler-Ross ("On Death and Dying") back in the 60's and 70's, well before alternative medicine found its way into mainstream society. She authored articles in magazines like "Science of Mind", "Guidepost", "Reader's Digest" on subjects from the power of positive thinking to the right to die. She was a dynamic woman with a traditional grandma look, and I loved being her granddaughter.

It is hard to pick the one most valuable lesson she taught me, as there are so many, but I think it would be this; she taught me that the only way to be truly happy was to have inner peace.  It was something that required discipline and hard work. It wasn't something you could just meditate about and it would be done. It took patience and work, prayer and humility. Blow out anger, breathe in unconditional love. And she always emphasized the need to try to practice forgiveness. Such was her path to inner peace. It may look like an easy recipe on paper, but it had taken her a lifetime of practicing. And she was the first to admit that even during the latter years of her life, she still had to work at it.

Nana was like the Mother Teresa of her nursing home. Despite suffering from horrible pain as a result of fractures caused by her osteoporosis, she would get out of bed each day and go visit patients who were actually "sick". She didn't believe herself to belong in that category. Nana would just sit and listen to those who didn't have family, and it made her feel good to feel needed. I never truly understood what that meant until I got ill myself.

When it got to the point where Nana couldn't make the rounds anymore, she traveled the world from her room. I would call her, and she'd say, "I just went to Scotland, and it was beautiful!" The travel channel was an international roundtrip ticket to her. It amazed me that, despite being almost bedridden from her pain, she kept a positive attitude. But that was the thing about Nana. She didn't allow the outside factors of her life determine her mood. It was the inner peace that kept her happy. She didn't need the outside world to make her glow. She glowed from within.

She sometimes come to me on lonely nights when pain is my only companion. I feel the gentle presence of her when tears are falling down my face. She washes over me like soft rain with her unconditional love I've always known. On her deathbed, she promised my mom to speak through our wind chimes. Even when the pain is so horrible, it is almost deafening, I will hear the clanging of the chimes and know she is near. 

There was a wish she would present me with often, especially when I was feeling uncertain and frustrated. She would always say to me, "I hope you reach your greatest good, and highest joy!" It seemed lofty at times, and I would wonder what I would be reaching for, my greatest good and highest joy? Over time, I have found an answer that feels right. My highest joy is doing this, writing this blog, sharing my thoughts with benevolent intentions. As for my greatest good, I believe Nana left the breadcrumb trail to that. Every day I try to get one step closer to inner peace. And overall, I don't think it's about HOW much inner peace you have, but rather that you are living with the qualities that will eventually take you there.

I miss her all the time. There are three things I say to myself that ease my sadness. 1) I am so thankful that she is no longer in pain. 2) It soothes me imagining that she is with my son Gabriel. 3) I know that someday, I'll see her again.


Saturday, July 12, 2014

Physiological Gambling

I preface this post with a bit of background info:
It was the fall of 2009, and I'd already been dealing with my chronic pancreatitis and pain for ten years, and been mourning the loss of my son for six years. I ended up in the hospital with a bad case of pneumonia and had tested positive for the H1N1 virus, aka "The Swine Flu". For whatever reason, women in my age bracket were more prone to this virus. After five days in the hospital, I went into lung failure and was put on a ventilator and spent the next eight days in the ICU in a drugged coma. My parents were told I had a 50/50 chance of survival. God chose me to stay on Earth.

I was sent home on 24/7 oxygen, and I am still on it. The virus permanently damaged my lungs, and I've struggled with susceptibility to pneumonia. It has definitely complicated the medical puzzle of my life. I try to remain hopeful that someday, I will get off the oxygen, but until then, it is one day at a time.

On to my story....

A few weekends ago, my mom and I went to Scioto Downs with a friend. Playing the slot machines is a relaxing way to pass a few hours. It's practically hypnotic: spin, spin, spin. There's really no slot machine technique I've picked up on, as it's all pretty random. The only true control over the situation is how much money you chose to invest. I accidentally did myself a favor by stashing my second $20 bill in my bra, which I didn't find until I got home.

As with any outing, I have to tote around a ten pound silo of liquid-Oxygen like an awkward second purse. I definitely stand out with my oxygen canula in my nose, and plastic tubing hanging down. I used to get looks because I was tall with dark hair and porcelain skin. Those were nicer looks. The more current looks are those of inquiry, judgement, pity, fear. Little kids will stare and point, make comments about the lady with the "stuff" hanging out of her nose (not boogies.)

I wasn't prepared for the first time a little girl pointed at me and started crying, "Mommy, that lady looks like a monster!" She wasn't the only one who ended up with tears in her eyes. My physical pain is something that may be readable in my eyes or on my face by those who know me, but overall, I can hide my pain on the inside.

Same in regards to my heartbreak from losing my son, Gabriel. I can keep that pain hidden, except, perhaps, on the rare occasion when I see a baby, and I get tears in my eyes. My loved-ones can see the heartache in my face, but the average Joe doesn't see a thing.

The opposite is true of my lung issue. It is visible! It is like a streaker on the football field of the OSU v. Michigan game. I think the stares are multiplied because of my age. People see this younger woman with oxygen on, and they are curious. The same was true that night at Scioto Downs. I had a great time, but I had reached my fill of puzzled looks, but the fun wasn't quite over yet. When I stepped outside, there were at least a dozen patrons skulking around with cigarettes hanging out of their mouths. Most people don't have to worry about being flammable when they exit a building, but I do. Fortunately, my friend's car was right outside. No one got blown up that night.

I don't care how much money people chose to gamble in casinos. If they want to bet the farm, E-I, E-I O for them!  I DO care to see them gamble with their health. It confuses me to watch people abuse their bodies in ways that are confirmed to be detrimental to their overall wellness. There's an "it won't happen to me" attitude I hear some physiological gamblers express, and the ignorance in their logic makes me crazy.  I see them puffing away on their cancer sticks, and I envy the fact  that they can breathe without portable oxygen. More than anything I pity their lungs that deserve more appreciative hosts. 

I have 52 feet of  tubing running through my home so I can breathe no matter where I need to go. When I have company over, I worry that no one trips over my oxygen leash, and that is what it feels like... a leash. I would love to have the lung capacity to run after my precious and very busy nephews. I pray that someday my lungs are strong enough to breathe unassisted. I dream of one day meeting a man and having the chance to kiss him without my tubing getting in between our lips, or of finding a man who can look beyond my tubing and kiss me nonetheless.

I look at those people lingering around the exit of the casino, and I just want to shake them and say, "Do you know what I would give to have my lungs back? Do you understand the gift you are throwing away?" With smoking, it's not just a few stained teeth and eternal bad breath that are on the line. It's the ability to breathe independently, without shortness of breath or pain. It's the possibility of going into lung failure and requiring a ventilator. My encounter with H1N1 and the 8-day intubation that came with it still impacts my lung health.  I think its safe to say that every day one spends smoking will impact her lung health for years to come.

At some point, people need to realize that these anatomical gifts are NOT unbreakable. They come with limits and should be respected for the miraculous machines they are. They should not be gambled with or taken for granted. Every cigarette is like a spin on a quality-of-life slot machine. God doesn't offer exchanges on worn merchandise. There is no magic wand to repair what we break on these journeys we each take, so take great care of the body you have.

Friday, July 11, 2014

My Little Miracle

With every hospitalization, there are blood draws and IV placement. Last week's hospitalization was no different. As a result of my frequent hospitalizations and IV therapy over the last fifteen years, my veins have revolted. They roll when a needle hits it. There's also a lot of scarring built up, so some aren't even able to be penetrated. Then there are those up against nerve sheaths, which feels like your entire arm and hand are being electrocuted. Even with ultrasound, it is sometimes impossible to get a vein. I learned early on that whining and moving only make the process harder, so I have taught myself how NOT to do those things.

This is where my spirit comes in; my inner voice that is omnipresent over everything in my body. From the moment the tourniquet is tied around my arm, I close my eyes and take a deep breath, and my spirit focuses. It pulls me away from the pain, slowly lifting me up and over the situation. I focus on my breath, slowly pulling air in and then letting it go. I visualize myself raising up to the ceiling, and I literally hover over myself. This allows me to hold still even in horrendous pain.

Usually the above recipe works. This past Sunday was an exception. My nurse came in to draw blood and couldn't find a vein. She tried twice, and failed twice. So a charge nurse came in, looked at the merchandise and wasn't hopeful. She tried four different spots on my right hand and arm to no avail.

Switching arms, the charge nurse inserted the next needle into the space between the knuckle of  my pinkie and ring finger on my right hand. My spirit and I had been hanging out above it all, but when she tried to hit that vein, my spirit came down really fast, and I cried out, which I never do. Somehow blood was all over my hand but not in the vials. She couldn't stop apologizing. I was in tears. I could not handle much more.
Then came my miracle. She saw a vein in my thumb, and for one last time, she stuck me, missed the vein and started fishing around with the needle. I was so focused on praying, I didn't hear the exact moment she hit the vein. My nurse smiled at me, so I relaxed to watch with hope as she watched the vial NOT filling up. She said, "I'm going to pull it out", and I thought, "There's no way I can go through another stick."

I closed my eyes and envisioned my vein releasing blood to fill the vial. I saw it, believed it. I held the vision in my mind, and then I heard the charge nurse say, "Oh my God! I have never seen that happen! That needle wasn't totally in the vein anymore. How can there be blood in that vial?" She was visibly shocked and kept saying that she'd never seen that before. My nurse was just staring, dumbfounded. I told them, "I was praying really hard!"

I thought it was my visualization of the blood flowing into the tube that helped . Perhaps the nurse was mistaken, and the needle was still in the vein. After almost thirty minutes of playing a pin cushion, I was just relieved the process was over. They had the blood they needed. I just wanted to sleep. When they finally left, I cried.

One of the precious side effects of my chronic pain and illness is my exposure to miracles. They happen more than you think, you just have to be open and BELIEVE in them. One of my survival skills has been to open my heart to the divine. Believing in an energy more powerful and more knowing than myself has infused me with strength when my human self has none left.

It carries me like a gentle tide during times when my disease has crippled me, and it doesn't let go until there is the soft sand of stability to give me sound ground to walk upon. Even when I am too weak to ask for help, it is as though my open heart is an invitation for divine love to heal me. I have come so close to death that I know no other reason for my survival than by the grace of God.

I felt the need to share my experience with the blood draw as a testimony of divine possibility. Believe if you want to or not.  The greater message is that there can be wonderful, life-altering events amidst even the greatest challenges. There is a change in the very core of the soul when you realize the power of hope and prayer. 

Somehow, accepting your weaknesses can be the most empowering feeling when you are trying to navigate the deep, dark waters of disease. It is an invitation for God and the Universe to swoop in an become your partners in your plight. Whether it's a defined religion or a spiritual connection, Mother Nature or the energy in the Universe as a whole, there is no end to the support that can (and does) surround you. Open your heart and mind, and you will never be alone again.

Tuesday, July 8, 2014

Inner Reunion

My 20th high school reunion was this past weekend. Alumni ride a float in the July 4th parade, there's a family picnic, an evening for food and drinks. When I found my voice in college and shed a lot of my insecurities, when I graduated and moved to D.C. and started a stimulating career, when I found a man I thought I would marry, have kids with and live happily ever after with, I envisioned myself going to that reunion and showing everyone the amazing woman I had become. I looked forward to showing my peers the TRUE me, she who was too shy to shine in high school.

And then I got sick, I had to give up my independence physically and emotionally. My body became my worst enemy. Love went by the wayside as I lost the ability to do anything but take care of myself.  I spent as much time in the hospital as I did at home. The pain that ravaged me left me exhausted and weak. And then the prospect of my reunion became a ominous cloud in the future.

As last weekend approached, I started to get nervous about seeing a classmate out and about. As shy as I was in high school, I was at least cute. I wasn't single, overweight, pale as hell and on oxygen. The last thing I wanted to do was to run into an old crush with my oxygen canula in my nose and the tank on my back. And the thought of going to the reunion by myself terrified me. By some weird twist of fate, my health rescued me from that possibility. A bowel obstruction landed me in the hospital, but I was able to see pictures of the reunion on Facebook. The photos took me back to the same types of insecurities I experienced in high school. The feelings annoyed me. I needed to reflect.

When I look at myself, I need to stop looking at the past, and instead see the reflection of myself in the present. I need to train my eyes to see not the oxygen canula in my nose, but rather the courage and strength it takes to face the world while wearing it. The oxygen tank on my back isn't weakness but my will to live despite my body's shortcomings. I'm proud of the strength of my spirit. I love the perspective my illness has given me in life. I've endured more than I could ever have imagined, and I'm closer to God than I could ever have dreamed.

There are no comparisons. I am not that girl from high school. And I am not that young woman from college and those early years that followed. The truth is that those girls have passed. The sadness I feel when I think about where I am in life is largely due the fact that I haven't let them go, and holding on to them tugs at my heart. They are gone like the loves I've lost and the son that died in my womb. It's time to put them to all to rest.

In her place is a totally new woman whose strength amazes me as sure as it comes from within. She has ambition and hope more than either of my previous selves ever did. She loves life, and loves love and wants nothing more than to find ways to express it. There is a torrent of birth in place of all the loss. There is no way to recoup the past, no way to undo the pain. But there's a new path ahead that simply needs footsteps to define it.

Now I've come full circle. I missed my reunion not because I was in the hospital, but because I was in the past. Next time around, perhaps I'll go as myself and see what happens. Those people didn't know me then, and don't know me now. Perhaps this post may change that. I need to spend some time with this new woman inside, too. I suppose this blog is my INNER reunion. Thank you for taking this journey with me!

Tuesday, July 1, 2014

My Lost Button

This fall will mark 15 years since I first got sick with pancreatitis. I was only 23 years old; a young woman with the sun at her back, rising at the dawn of her professional, adult life. In my mind’s eye, I am still that 23 year old girl. The years spent on feeding tubes and oxygen, having surgery after surgery have felt like a suspended reality. Just when I feel well enough to stand up on my own, another wave knocks me down, and I'm left struggling in the foamy water where the surf crashes, one wave upon another.

In my mind's eye, I see the people I used to have as friends. I see the kids I used to babysit. I see my baby brother all grown up with kids. I see how far everyone has come, and I am broken-hearted because it truly speaks to how much life I’ve lost.  All those years I thought I’d be pursuing my career, getting married, having kids; all those years are gone. And all those people I once knew have all lived these past years, and I am emotionally and physically so far apart from them that it takes my breath away.

In so many ways, I still feel 23, and yet at the same time, I feel like I’m 90. I feel like I’ve lived lifetimes in these 15 years; lifetimes that very few care to or are able to understand. Yet, I also have the memory of the 23 year old that had a whole world at her footsteps when all her hopes came crashing down. I can’t recoup those years, and I struggle with that truth every day of my life. I can go forward, though. I can do that, and I WILL do that with gratitude in my heart.

As a child, I remember the book “A Pocket for Corderoy” about a teddy bear that was left untouched on a store shelf because he was missing a button. No one wanted a bear that was imperfect. I loved that book, and at 37 it means more than it did when I was five.  When I see my former friends and acquaintances that have all gone on with life, I feel sort of like Corderoy who has been put on a shelf for all my imperfections.

Those who left me behind, or perhaps who my illness left behind are merely protecting themselves. Illness is not pleasant to watch, nor is suffering.  Life is too busy to slow down for a Corderoy, and Corderoy is too slow to keep up with much of life. It is a frustrating riddle.  As for now, I am left with the most loving family and a few true friends who don’t mind my missing button. As much as it hurts them, they love me nonetheless.