Liquid Splinters

My tears have been flowing much more freely of late.  I've recently determined there are two types of crying. There's the cleansing, cathartic cry that gives old thoughts wings, and there's the tortuous, unproductive cry that torments your soul. I've been stuck in a retrospective period where I look back and wonder if, had I taken a different job or stayed with a certain boyfriend, my life would have turned out differently. Would I still have gotten sick? Would I be married by now? Would I have children? Would I have been spared the terror of losing a child? The "what if" game is dangerous and painful, and my mind has been playing it more than I'd like of late.

 

My writing is the ultimate therapy and escape for me, especially when I'm being haunted by memories that I can't change. It's my way of purging negative thoughts, of freeing myself from the "what ifs". Somehow, releasing them on paper, combined with the cathartic emotional release I experience, weaves what I hope are helpful, proactive thoughts for others to grasp as they cope with their own issues. Unfortunately, it's not something I can force. If I'm not inspired, my creativity shuts down. The lights may be on, but no one with an ounce of inspiration and productivity is home.

 

One thing that can help inspire me is music. I make play lists on YouTube of songs that take me back to certain times in my life, or that remind me of difficult times. My mom was listening with me the other night, and she commented that most of the songs are sad. I guess she's right. Most of them do pull on my heartstrings, but that's the way I make my own music. Diving back into the deep end of difficult times reminds me not only of my strength, but of my survival of things that should have taken my life.

 

Swimming through the sometimes dark, murky waters of my past inspires me, reminds me that I can overcome whatever challenges me with God's help. It humbles me that I've been chosen to continue on this path, difficult as it may be. I'm still walking. I'm trying to hold my head high. Music acts like a magnet, drawing out my tears like the emotional splinters they are and gives me the chance to purge hurtful pieces of my past that I didn't even realize were there.

There are times while writing when I can't stop the tears from falling. They can be rough and sharp as they hit my cheeks and trickle down my face. They're pieces of my past that have been buried so long and so deep, only to finally be freed by music that takes me back to the moment it first burrowed into my soul. Crying isn't always a bad thing. Much like the rain nourishes the Earth, tears nourish the spirit. They wash away the past and feed the positive aspects of your soul's library of feelings and memories.

Of the many things I wish to accomplish with my writing, I'd love to inspire tolerance among readers. We all have our battles, not one more serious or difficult than another. Each struggle is relative.  Rather than fighting about our differences, why can't we unite in our similarities? We all bleed the same blood, cry the same tears. Their causes may be different, but not one person is exempt from them.

 

Change happens one step at a time, and the past is healed one tear at a time. There is no perfect recipe to overcome that which ails us. In my own life, I'm accepting my tears as a sign of growth and change. I can't evolve as an individual if my heart and mind are crowded with dark memories and regret. Music is a magnet for my emotional splinters, my writing is the way I weave past mistakes into healing and God is there to wipe my tears.... yesterday, today and tomorrow.

 

 

 

 

 

 

 

The Me That Used to Be

 

It's been an interesting summer. While I continue to deal with major medical issues, I'm nowhere near as sick as I have been in recent years. My body is holding together the best as can be expected with all it's dealing with. It's my mind that's struggling. I've been having night terrors, lots of anxiety and my mind, while crystal clear, is too overstimulated to focus on my writing. At least not as much as I'm used to. It's just another phase on this ongoing journey with my health.

In an attempt to help my mind through this time, I started seeing a psychologist around the end of June. The first few visits were spent filling in the blanks of all she would need to know. I suppose I was riding a cathartic high of vocalizing all my demons. After the second visit, the tenor of my appointments changed. She had heard only a fraction of my health and personal history, but it was enough for her to provide helpful guidance.

The day before my third visit, I found an old picture of me that I barely recognized. I was thin, beautiful, and made up like I used to enjoy being. I remembered when it was taken, knowing it was right around the start of my last relationship... ten years ago. It felt like a kick in the gut. I look nothing like the girl in the picture, and it depressed me beyond belief. I stuffed it in my journal and tried to forget it, but I couldn't.

Going into my appointment, I hadn't expected the picture would be a topic of subject, but it was. I told her that I found an old picture of myself that I barely recognized. It looked and felt like a lifetime ago. Before I knew it, my face was wet with tears. She asked me what had made me so sad. I said, "I don't know where that girl went. I don't recall when I lost her, but I don't think she's coming back."

I started to come to grips with something at that session. The me that used to be is no longer.  I don't know how she could be after all that's happened with my health. Thinking of the picture, it's like she, with all the dreams she'd always had, is dead. It was before the oxygen, before all the scars, before I became a practical shut in due to my poor immune system and overwhelming anxieties. It was before I became a slave to disease, lost my social life and before I forgot knowing what it felt to be loved by a man.

It seemed like so long ago, almost like another lifetime. In a way, it was. I hadn't realized just how much had changed; how much I had changed. How much I'd lost; the career, my son, my dreams for a family of my own. As I started to process all these memories, the tears came, and my counselor gave me her astute assessment of what I was going through.

"You're mourning your former self. Mourning all you've lost over the past 16 years of chronic illness. You've spent so much time coping with your immediate physical issues that you haven't grieved what you've lost along the way. This is a stage of coping with loss, and you've lost plenty."

For the next few weeks, I cried my way through my sessions.  I started to understand a little more about my anxiety. The mind can feel unstable when it's in the midst of a tug-of-war between what was and what is. It's hard to stop wanting the life you'd always wanted, even though you know it's near impossible. Even if I could get pregnant, which would be a long shot, how could I be a good mother when the pain makes it hard just to get out of the bed some days? And what kind of man is going to want to be with a woman with all the health issues I have? It's not an easy life. I've had to  accept it for myself, but I can't imagine any man wanting it for himself.

My therapist is so patient, but she will challenge my logic. When I talk about longing for a man, including love, intimacy, and sex, I often make it sound like an impossibility. It isn't just because of my health issues on the inside, but also the oxygen I wear on the outside. That's not something I can hide, and it's definitely not sexy. But when I start on the self recrimination, she will ask how I can make the decisions for men I have yet to meet. I guess she has a point. Anything is possible.

I'm still in therapy, and I continue to struggle with my physical health. I picked up my journal last week, and the picture I'd stuffed in it dropped to the floor. I bent over and grabbed it, staring closely at the woman that was. Yes, she was beautiful, but there was something I hadn't noticed. Her eyes looked dead. I cringed, remembering there was a time when my pain medicine had more control over me than I did. It made me zombie-like. I spent years being overmedicated, either at the hands of my doctors or by my own. There are years I don't recall, so sedated I had been that only fragments of memories remain.

Chronic pancreatitis has the reputation of causing some of the worst pain known to medicine. It could rip me apart, cut me in two, cripple me to the point that nothing but the fetal position was tolerable. I had been so terrified anticipating the pain that was to come that I'd take extra pain medicine to ease the onslaught. I'm NOT proud of that tendency, but I have to let regret go. Every moment I spend regretting or incriminating myself for old behaviors is a moment lost. They are moments I could instead spend being grateful, joyful or simply at peace.

I laid the photo down and looked in the mirror. My eyes were clear. I went through some recent pictures, and my eyes were alive and sparkling. I started to think about the things I liked about myself. I thought of my inner strength, my spiritual awareness, my empathy for others. I thought of my courage in the face of stress, my positive attitude, my crazy sense of humor. I may not be the me that used to be, but my therapist has helped me see that everything isn't lost. There is still so much to be grateful for, and my inner strength continues to help me face my physical trials and tribulations with spunk.

Grieving what was is helping me move forward to the woman I have yet to become. The possibilities aren't endless like they once were, but are enough to make it worth the investment of my heart. I'm fortunate in so many ways. I have the unconditional love and support of family. I've got two nephews who help fill the void of not having children of my own. My body has lived through serious illness and desperate situations. I have a home, I have food, I have a bed, a precious dog. I have much more than most.

 

I often feel guilty for feeling down about my health, because I AM so lucky. My therapist told me there is no need for guilt. I can be grateful, yet heartbroken at the same time. One doesn't cancel out the other. Loss is loss. I've lost years to my physical battles. I've lost love, romantic and maternal.  It would be abnormal NOT to feel down now and then. There is a hole in my heart that is slowly being filled with the love and experiences I'm gaining as I move forward.

The body and mind heal differently. I've realized that emotional healing is a process of changing ones perspective of ones physical reality. And it's fluid, ever changing as the body and spirit evolve through life's many adventures. Life doesn't always turn out the way you thought it would. Mourning the changes between what was and what is can be as important to the mind as a medical procedure is to the body. Sometimes life takes a different direction, a different road. It doesn't have to be better or worse than what was, it's just different. I'm just happy to have survived all I have so I can walk down the path God continues to lay before me. On the horizon, I see the me that will be, and I look forward to becoming her.

The Wheels on the Bus..

This post is rated NC-17. Those of you who don't like a few well-placed bad words, who don't want to be sad or upset would be better NOT to read what follows. I make no apologies for writing raw emotions. No judgment if you choose not to proceed. I'll never know. I'd humbly request the same in return. I'm just giving you a heads up. This is a heavy one....

 

There is something very broken inside of me. In fact, my insides feel like they're the porcelain remains after a bull's visit in a china shop.  The pain I feel on a regular basis, the same pain that requires steady pain management and greatly limits my activity, is overwhelming on a normal day. In the last week, I've developed pain that has paralyzed me. It's in a different area and of another nature than my norm. I'm so scared that my already intense pain has permanently turned into something even worse. I'm a slave to its depth. 

 

Saturday night, I ended up in the ER with an incapacitating pain that has only been occurring in the last five days or so. My pulse was through the roof, I was shaking with chills, while at the same time sweating through my clothes. I felt like my insides were being boiled. I had started retching bile, unable to vomit because of my esophageal issues. Even water was making me horribly nauseous.

 

Everything was moving in slow motion. I couldn't focus. There were periods I don't recall, as I was practically passed out from the intensity of it. It felt like someone was grinding a thousand-pound stone into my lower right abdomen, with frequent surges of even worse pain that I can only describe as feeling like a Charlie horse in my pelvis and into my back.

 

I was taken right back to a room despite the busy ER. The doctors were pretty convinced it was appendicitis, and I was given pain and nausea drugs through an IV while I waited for my blood work to come back. It was all normal. They made me drink a bottle of contrast before putting me through a CT scan. Nothing showed up. I was released and told to follow up with my doctor.

 

The pain was somewhat improved, but still an 8 out of 10 on the pain chart. I had to fend for myself until Monday. They told me if the pain and nausea continued that I should return to the ER. That's logical.  It's only the tip of the bullshit iceberg.

 

Lately, I've had night terrors that just recreate my physical reality. The emotional and physical pain is palpable. They're almost always about my health and/or the loss of my son. When I'm awake, I seek sleep to escape the pain, but it follows me and saturates every moment. When I'm asleep, my dreams chase me back to consciousness, as the pain is just as real.

 

I tried to nap Sunday afternoon. I hadn't slept the two previous nights. The dream I had still gives chills. I dreamed that my current pain was just as bad as in reality, and I had to try to achieve all my hopes in life in one day. I had to fly on a small plane from one thing to another; achieving love, having a child, establishing a career and getting to my grandmother, who is currently doing very poorly. I only had four flights to achieve them all.

 

I was on one of the flights, and I couldn't breathe. (I'm on oxygen, so this is super scary.) The pain saturated all the air in the plane, and I knew I wasn't going to reach any of my aspirations. I knew I was going to die. I couldn't breathe, because the pain was suffocating me. It was slowly swallowing me whole.

 

I awoke from my nap gasping for air like a fish out of water. My mom was next to me on the couch, and when I awoke so distraught, she asked my dream. I proceeded to tell her, and I just broke down. My cries didn't even sound human to me. It was gut-wrenching, soul-quaking sobbing coming from my mouth, my lungs, my traumatized spirit. I was a wreck.

I spent the entire night wide awake, despite being exhausted. The pain was grinding away at my body, and the night terror was grinding away at my spirit. I fell asleep sometime after 4am, passed out in the fetal position from exhaustion.

 

Again, I awoke gasping. More bad dreams. It was around 10am. I called my head surgeon's office and left word with his assistant Laurie to please have him call me back. My pulse was beating so hard, I could feel it in my temples. I couldn't handle the noise from the TV, the radio, the internet. I just laid with the heating pad, praying for the strength to get from one moment to the next. At 11:41am, my phone rang.

 

"Hi Jessica! This is John, and I'm a nurse case manager with the department of trauma and general surgery. I saw you called the office this morning, and I'm aware you were in the ER this weekend. How are you doing?"

 

"You're with Dr. S's office?" I asked.

 

"Yes. Laurie told me you called. How are you doing?"

 

"Honestly, John, I'm feeling pretty rough. While my pain isn't as intense as it was on Saturday, I'm barely able to get out of bed. My regular pain medicine isn't touching this pain. My pulse is high, my BP is high, and I'm trembling. I honestly don't know what to do."

 

"Well, it looks like your blood work and CT scan were normal, so they didn't find anything to treat at that time."

 

"Yes, John, I'm aware of that. But this isn't imaginary pain. It's very real. The ER doctors agreed. They just didn't find anything to fix."

 

"I see you have a history of adhesions from all your surgeries. They can work themselves into kinks and cause spasms and pain. Eventually, they might work themselves out. Keep using your home pain regimen."

 

"This isn't working itself out, John. I can't get this pain under control."

 

"The problem with chronic pain is that you develop at tolerance to medicine if you've used them awhile."

 

"I'm aware. I've had chronic pancreatitis for 16 years, and I've required pain medications to treat it. My body unfortunately has a high tolerance to even the strongest meds, and what I'm currently on isn't touching this new pain."

 

"Perhaps you should return to the ER then."

 

"Why would I return to the people who told me to leave and call your office?"

 

My line is beeping in, but I don't want to interrupt John.

 

"Well, my only other suggestion is to keep following your pain management at home. If it doesn't get better, and you have an opening in your schedule, you should call Laurie and see if you can see Dr. S."

 

"John, I don't have a schedule. Right now, I don't have a life. And the pain medication I take is for something else, and it isn't helping this new pain AT ALL! I called Laurie, and asked that Dr. S or his assistant call me. And instead YOU called me. And now you're telling me to call Laurie back or go to the ER?"

 

"Yes, those are my suggestions for now. You should really call Laurie.  I hope this helped a little."

 

"OK. Thanks for calling John. I'm going to call Laurie back. Please overlook that and don't call ME back. We've exhausted this perspective. I appreciate your time."

 

I ended the call, and took a deep breath..

 

I. JUST.NEED.SOMEONE.WHO.CAN.HELP.ME.

FUCKING HELP ME! I NEED HELP! PLEEEAAAASSSSEE!!!!!

HELP!

I'm waving the white flag of surrender, or in this case, defeat. It's like going in circles. I'm in so much pain, I'm beyond exhausted, and yet I have to hit the proverbial pavement running to figure out what's wrong with myself. I have to be my own advocate, because if I don't, I'll just keep getting worse. I felt so helpless and lost! I needed someone who could tell me what needs to be done and how it can be accomplished. 

 

It's one of the biggest problems with our medical system today, specifically with treating chronic pain. Doctors tell you if the pain continues or gets worse to go to the ER, and then if the ER can't find anything immediate, they send you home. You may get a dose of pain meds here or there, but it just ends up being wasted energy that only defeats you more when you're already in the gutter. And yet, as you walk out the ER door, they tell you to come back if you're not better. I want to ask, "THEN WHY AM I FUCKING LEAVING?"

 

All this is going through my mind, and it hit me that I had missed a call while John was gracing me with his wisdom. I listen to my voicemail.

 

"Hi Jessica! This is Annie with Dr. S's office. Laurie gave me your message. Call me back."

 

The one person I needed to talk to I had missed because I was talking to the wrong person. Gripping my heating pad like the flotation device I wished it could be, I called back and got Laurie. She connected me to Annie, and I had a mother-load of a breakdown on the phone. She listened, put me on hold for two seconds and then told me that Dr. S would see me during his lunch tomorrow. This man is my hero.

 

We talked a bit, and she was asking me what I use to treat my pain. I told her.

 

"Unfortunately, Jessica,  with pain medicine, your body develops a tolerance after awhile. Have you tried a heating pad?"

...... go round and round, round and round, round and round. The wheels on the bus go round and round, all the live long day.

 
 

9/11 Poetry

On September 11, 2001, I woke up to a phone call. It was my mom, and she was crying. She said that there were some horrible things going on, and that I needed to turn on the news. Her emotions were warranted due to what she had seen on the morning news and what she had heard on the radio.

 

There was another layer to the sadness and fear I heard in her voice. She knew that one of my dearest friends was due to fly into N.Y.C. that morning. He'd been my college boyfriend and was a very close friend. Immediately waking and turning on the news, I was overwhelmed and nauseated by the terrors taking place. The thought of something happening to Brian shook me to the core. 

 

I watched as the news caught people jumping from windows in the towers. I watched in horror as the first tower fell, followed by the second. I called my friend's family to see if they had any news on his flight. For much of the day, they didn't. In retrospect, I can't recall when we found out he was safe. It was an abysmal day.

 

Several days after 9/11/01, I wrote the poem below called "Saved". On 9/11/02, I wrote a second poem that I never gave a title. Poetry used to be my favorite form of written expression. While it doesn't fit with my normal blog posts, I wanted to get back in touch with the emotions that day inspired. In turn, I hope it does the same for those of you who read it.

I am proud to be an American! I will always be thankful to all the police officers, firemen/women, paramedics, etc. who raced into a nightmare to save lives. And I am thankful for all those in the military who have served to protect our country; then, now and ALWAYS.

 

SAVED

There is a fire here

I feel it burning, burning

My skin is melting

My smile is fading

I cannot see for the flames

I cannot breathe for the fumes

Where to go, where to go

There is no escape

Our lives entwined

We are all lost

In this burning, burning

Buildings falling

Nowhere to go

No one to hear

There is no light left

Only dark, only ashes

And we pass onto the Earth

From whence we came

Died out of hatred

Only now to be loved

God's ultimate love

God's divine healing

Wraps us all in faith

We are safe

We are comforted

It's those we left

Who now are lost

They look frantically

For faces and bodies

That are gone

But we are here

Shouting to them

Singing to them

That life is better

Here with God

And that is how

The Earth will be healed

If we all just turn

Back to God

And find ourselves

Saved

 





**There was a documentary about 9/11 made for the year anniversary, and the poem below is in part my reaction to it. There was footage of the lobby and entrance (not sure how that was), and you kept hearing these huge thuds, which turned out to be the sounds of bodies that had jumped from windows. The documentary played a part in some of the images I describe in the poem below.

 

UNTITLED

There are bodies falling

Falling...falling

Through the glass

Into history

Their limbs crash

Spreading like debris

Across the pavement

Across our memories

The sound like a bomb

Penetrates our ears

Echoes in our heads

The irreversible sound

Of hatred and anger

A so-called loyalty to God

That not even God understands

It is the continuation

Of Eden's sin

Our own ignorance

The thought that vengeance

Is somehow more important

And more powerful

Than love

There are bodies falling

Falling... falling

Their blood sprays my eyes

And I can no longer see

The world as it was

Forever tainted

With their crimson remains

History now colored

In shadows of red

And we are left hating

Those whose hate

Changed our lives

A cycle of emotion

God wishes us to defy

 

 

 

 



The Truth About Lost Souls

I am ever-amazed at the power of words. Recently, an individual described himself to me as a lost soul. As I read the words, my heart felt squeezed in pain, not only out of empathy, but also a desire to reach out and nurture his wounds. The fact that we are practical strangers was of no relevance. As one human being to another, I wanted to help. I've been thinking about it ever since. While I cannot directly help him, I thought I could at least write through my thoughts and potentially help others who identify themselves as the same.

 

Truth be told, I believe we all feel like lost souls at one time or another. We're all lost souls when we're going through something painful that blurs our vision of the future. We can't see what's ahead of us.  It's like smearing dirt on the windshield of the car. It's like being on a journey that we can't see. We don't know if we're making progress or falling off the proverbial cliff. You don't really have any vision at all. You feel like you're just floating through life without a clear destination. It can break your heart and defeat your spirit.

 

Sometimes bodies get sick or experience pain so that doctors can fix something that will then allow you to live a longer, healthier life. Crazy as it sounds, getting sick can teach you how to take care of yourself; how to do what's in your body's best interest.  It can teach you great empathy, and perhaps lead you to reach out to help others who have gone through similar issues. That's my journey.  I so often curse the chronic pain and illness. I hate it, and tell it so. But there are those days when my illness feels like my most precious gift. It's made me a stronger, more humble person, and I hold fast to the infinite blessings in my life.

 

Sometimes relationships fall apart, ones that you thought were supposed to last a lifetime.  Love can be so intoxicating and delicious, but it can be equally toxic. Perhaps you weren't able to be true to yourself while with that person. Perhaps you were in a destructive relationship. And maybe, just maybe, your true soul mate hasn't yet found you. People come in and out of our lives. When someone hurts you by deceiving you or walking away, perhaps it's because, deep down, staying together would have hurt you more. I've witnessed that with my own eyes.

 

I once had a therapist tell me that life is not linear. It's web-like. That doesn't deny the feeling of going backwards during hard times, but it should give you pause when you go to judge yourself regarding where you are in life. No matter how unpleasant, I do believe we find ourselves exactly where we're supposed to be at any given time. If we can survive the heartache and loneliness, the physical and/or emotional pain, being a lost soul can lead us to our "greatest good and highest joy", as my Nana used to say. 

 

To every lost soul, may you find the way to your next tomorrow. It takes courage to be vulnerable, and you can't be found until you've been lost. There is one word that you should cling to when your soul feels lost and lonely, melancholy and defeated. That word is "HOPE".

My Couture Compass

I remember hearing as a child how quickly time passes, especially as you age. A more true statement I cannot imagine. So many years feel as though they've been swallowed up by medical mayhem and misdiagnosis. Time has been spent managing one crisis after another, and when you're fighting for your life, time goes even faster.

My last post was about the emotional crossroads I've found myself at, and the weight of all that's passed felt like a ton brick on my soul. I thought I was losing it. I've realized through counseling and prayer that I'm actually on my path to claiming it. And by it, I mean my compass that seems to be sending me on a journey inward. My physical issues seem so overwhelming at times, almost like layer upon layer of straight jackets that are binding me from accomplishing what I want in life. However, when I think of where I was physically last year this time, I am light years ahead. And compared to two or three or five years ago, I'm a miracle of survival.

When pain is a constant in your life, it's easy to feel overwhelmed by it. After all, it HURTS, but it hurts you only as much as you allow it to. This is a revelation I've made in just the past fifteen minutes.  Time passes, days fly by, months disappear. It's so easy to get stuck in the undercurrents of life that you can lose your perspective and appreciation for the privilege just to LIVE it! The day in, day out activities we each go through make it very easy to become almost numb to the actual energy of life. Rather than feeling the breeze in our hair as time blows through it, we are stuck in ruts of the norm.

I can't remember the last day I lived without pain. It's been over 16 years. Sometimes I wish I could go back, with the knowledge of that last day of painless liberty, and do all the things I wish I could do now. I'd love to go back and soak up all the painlessness and pack it away like squirrels do with food for the winter. That way I could access morsels of painlessness to enjoy when I find myself struggling. It's a great theory, but obviously not one that is possible.

So I've developed a plan for moving forward in time. I've been told over and over by accomplished doctors that it's unlikely I'll ever be pain-free. With the help of a counselor, I'm learning to focus more on my emotional journey, as it is something I can truly affect. I can eat healthy, do yoga and acupuncture, take vitamins, etc. to be proactive about my health going forward. The damage to my nerves and the extensive adhesions from scar tissue will likely remain unaffected by those choices. That's just part of my reality.

On this journey inward, one of my goals is to not get lost in time. It passes quickly enough without any help from me. I don't want to be a woman that gets lost in a monotonous tizzy where one day runs into the next. I need to use something that is unique to me that will make me sit up and take notice of every day in some way. Something that infuses me with the privilege of being alive, imperfect and eccentric as I am.

So I rearranged my perspective and thought that perhaps my pain, and the daily routine of its presence, can be that thing that MAKES me take notice of every day. Rather than drown myself in my inability to fix it, I can feel it like a lightening-rod of awareness that surges energy into my step. If it's going to be there for the long run, I best make friends with it. Nasty neighbors make for nasty drama, and I've met my drama quota for awhile.

The counselor I've been seeing has asked me to start a gratitude journal. For someone who has had a SEVERE case of writer's block this summer, I thought it was going to be a challenge. What I've found is the opposite. I've realized how full my life is of simple pleasures, and how much I enjoy writing them down. It's helped me accept my physical challenges, primarily by seeing how much better I am that in the past.  It's documenting what I'm able to do despite my physical limitations, and I'm left with a record of my joy and gratitude.

Everyone gets lost now and again. Time can swallow you whole. Realizing that my pain can be one of my greatest tools, I'm back on track. My compass is pointing inward, where true identity is found. My Nana used to tell me that inner peace was the greatest gift you could give yourself, but that it takes lots of time and effort. Her physical pain was severe, especially in the last few years of her life, but she somehow nurtured it into a bountiful treasure. She used to breathe her pain in and then blow it right out. It was a sign of life.

I've made several advances in my thinking. First, being lost isn't necessarily a bad thing. Sometimes it's just a physical or emotional sign to reassess your direction and purpose.  Second, taking time to note life's simple pleasures can make the big picture clearer. Gratitude is like a life vest that keeps you from drowning in life's rougher challenges. Focusing on the good keeps your head above the water. The joy of feeling alive far outweighs the sadness of the pain. My pain and I are bound straight for my heart. 

 

May you all find your couture compasses.

I've realized that I'm healthier than I've been in years (knock on proverbial wood.)

Finding Jessica

I can't say for sure of the exact day, but it's been just over a month since I hit the proverbial wall, and all my emotional and physical issues splattered like tomatoes thrown from an angry crowd, leaving me with a mess to pick up. The mess was me. Finding these words has been an internal struggle, almost as hard as the courage it took to seek help.

It's been over a month since my last blog post, mostly because I've been so paralyzed with anxiety and grief, depression and fear that no words could make their way through the haze of my scattered psyche. After all I've lost these past sixteen years, I feared that perhaps the weight of it all had stolen my words. And they are gems to me. I require oxygen to breathe, but when I can't write, my spirit is suffocated. I was lost, and had nothing to write, my broken heart a prisoner of my broken spirit.

Truthfully, I'm healthier than I've been in years, but certain struggles remain. My esophagus continues to constrict, requiring almost monthly dilations. On top of that, I have adhesions throughout my abdomen caused from scar tissues from at least a dozen surgeries. I was hoping to find answers when I met with my head surgeon the end of June, but he told me there was nothing he could do. Doing more surgery would only create more scar tissue, which can then create more adhesions, and more adhesions can create more pain. It's a vicious cycle.

He suggested that my pain doctor raise my medication to help with my abdominal pain. The pain doctor told me that as long as I have to wear oxygen, he won't increase my dose, as higher doses of narcotics can decrease respirations. I spoke to my pulmonologist, and she said that until I stopped aspirating my food and medicine due to my esophagus constricting, more scarring to my lungs would happen, and I would have to live with oxygen, most likely indefinitely. And then we come full circle.

To say I've become a homebody would be an understatement. More accurately, I have become a shut-in, with only the occasional weekend outings with my mom. My driver's license expired years ago. Until recently, I've been on too many pain killers to drive safely. Now that my pain medicines aren't a risk, I can get my license, but I must first take both the written and driving tests over again. It's a project for the near future, but for now I'm a passenger.

My self-inflicted alienation isn't just from a lack of transportation, though. I've developed a ridiculous amount of anxiety anytime I go out, especially if it's someplace new or unfamiliar. Even when I go out with my mom, who is my best friend and ultimate caregiver, I still get nervous. I'll make plans and then cancel later on because I'm too scared to leave. Scared of what I do not know. It's completely unfounded. I want some semblance of a normal life back, so one would think I'd be overjoyed to get out and about. I finally realized that until I work through some of these emotional issues, I could consider that normal life a pipe dream.

The armor I wear to deal with my physical pain unfortunately doesn't translate for my emotional issues. I can be calm and cool right before a surgery, but the terror and anxiety I've felt just sitting and looking out my living room window recently is immune to my protective garb.  Time is suspended, and hours can pass as I hold my legs close against my chest, rocking gently as I try to tell myself I have no reason to be afraid. It's like an emotional epidural. Every cell is shut down, with only an endless spiel of anxiety-laden thoughts playing on my nerves like an old picture show.

I see all my negative traits, my character flaws, my many limitations, and I wonder how I can have even the tiniest hope of meeting a special someone when I'm such a mess in my own eyes.
I started to feel paralyzed with fear and depression. Even blinking took more energy than I had. I never thought I could be so exhausted from doing absolutely nothing. I was constantly afraid that something bad was going to happen to one of my loved ones, and I was scared shitless that I'd never be able to shake off the ominous fear that gripped me.

In the midst of all this physical and emotional madness, I had a falling out with a someone I love very much. The stress of our situation even penetrated my dreams to the point that I was having night terrors. I would repeatedly be roused by my mother shaking me awake, because I would be screaming and crying out in my sleep, soaked and clammy from cold sweats. As painful as it was to walk away, that relationship became too debilitating. The collateral damage was too great. I had to act in self preservation.  It was the piece of straw on the camel's back.

So about three weeks ago, I made one in a series of calls to find a therapist. I could remain alone and crippled by my issues, or I could seek objective advice to learn some coping skills. My physical issues were compromising my emotional health, and my emotional issues were compromising my physical health. I needed help breaking the cycle. I've fought so hard to survive the physical battles that have come my way. I wasn't about to give up fighting now. Yes, my body has been weakened and repeatedly attacked, but it was my spirit that was truly hurting.

There have been hours where I've been too exhausted to move from my seat. The scope of my physical issues and the long-term reality of their existence suddenly overwhelmed me. When my brilliant surgeon confirmed that there truly wasn't anything that could be done, other than symptom control, I felt something akin to hopelessness. The idea of facing my pain every day, at various degrees, for the rest of my life was mind-boggling. I started to question what quality of life I could expect.  How could I continue getting out of bed every day when the prospect of pain is the norm?

It's said that asking for help is the hardest battle. I only somewhat agree. While asking for help is hard, it's hearing your own cries that is the hardest. There is so much noise in life, from both internal and external sources. It's hard to hear quiet crying, especially when it's coming from within. I've built up a shield over the years, my first defense against the continued onslaught of physical conditions. Part of that allows me to cope with repeated procedures and surgeries with some degree of calm and bravery. The negative aspect of that shield is that it drowns out those soft inner cries. Until my spirit is screaming, I just go through the motions.

Last week, I met my counselor for the first time, and we had a great connection. The emotional frailty that motivated me to seek help was suddenly replaced with a spiritual pride. No one can save me but myself, but that doesn't mean I can't seek help and utilize the tools I learn in therapy. The Jessica I was 16 years ago when I first became ill is not the same Jessica I am today. Not even I know who she is. That's what I'm in the process of finding out. The person I am after all that's happened, the woman who has been knocked down repeatedly but continues to stand back up; she is a work in progress.

I'm learning that working through weaknesses is a way to discover great strength.  Nobody's life is free from challenges and turmoil. I'm seeking the person who resides beneath the stress.  And I'm learning to love whoever I am, despite it all. No one else can figure it out but me. My search for Jessica is perhaps the greatest journey I'll ever undertake. She's in here somewhere.