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.

Why I Believe

There is an ongoing quandary in my head about how to explain the reasons I believe in a higher power. Call it the Universe, call it God. I call it the Divine, a force that is greater than myself. There is suffering everywhere you look in our world. It's deplorable, heart-wrenching, overwhelming. For some, seeing all the suffering makes them question the existence of a higher power. How can there be a god when there are children starving or dying from cancer? When there is war and abuse? How can there be a god, and furthermore a merciful, benevolent god when all these things exist? I am often asked how I can believe in God after all that I've gone through. Here is my best attempt at a response.

Growing up, I was not traditionally religious. My family informally celebrated Christian holidays, but the Bible wasn't a part of my life, nor was church. However, my Nana was a deeply spiritual woman, and being in her presence brought God to life for me. As early as elementary school, I would ask her to take me to churches from a variety of denominations, searching for that perfect fit. It wasn't until college that I asked her to take me back to the church she called home. The church she took my mother to as a girl and where my parents were married. I'll never forget that Sunday morning service at Unity Church of Christianity. We sat in one of the first rows, and as the opening prayer was said, Nana and I both had tears in our eyes. We were home, and I felt spiritually complete.

When I got sick 16 years ago, it felt like the skies opened up and a mighty wind blew me on my ass. My life became an obstacle course of pain and misdiagnosis. Just as I was starting my career and trying to establish myself, my illness blew the candles out. I was left in the dark, fumbling my way over long hospitalizations and demotions, frequent trips to the ER and narcotics that wrecked havoc with my body and mind. I couldn't help but wonder where God fit into the painful chaos my life had become.

I sought out a local Unity branch, and I found a great source of solace and support at a time when I really needed it. I was living in Arlington, Virginia and working in D.C. My parents would come as often as they could, but when they couldn't be there, my church family was. My minister would sit at my bedside and help me sort out my thoughts. For whatever reason, I had been chosen for that path that has lead me up until today. It wasn't a punishment from above. I held on and kept my faith as the disease took me on a very rough ride.

When the days turned into months and the months turned into years, I began to wonder why I couldn't catch a break. Every time I thought the pain couldn't get any worse, it would, and I began to drown in a haze of first medical misdiagnosis, only to be followed by a diagnosed nightmare. It just kept going, and I couldn't help but question why God was allowing it all to happen to me. What had I done to deserve such punishment? I often thought I must have been a Nazi or serial killer in a past life to reap this painful karma. I spent a lot of time meditating through my tears. While it wasn't immediately clear why God wanted me to experience the things I was, I held fast to my roots of faith I had found with my Nana as a child

Time is a powerful thing. Perhaps more than anything else, it can change one's perspective and attitude. It heals. It enables personal growth. More than any surgery, medication or therapy, it changed the way I saw things once the illness truly took over and my life became unrecognizable. My body wasn't the only thing that was transformed. My spirit grew even when my body faltered. For all the ways my body was disabled, my mind and spirit grew in ways I didn't think possible.

My empathy for others, my passion to help those with similar problems, my inner strength and faith in myself and God... those were all the reasons I was chosen to endure all that I have.  I have been able to look back and see my pain and suffering as one of my greatest gifts. Without those two things, I would not be the woman I'm proud to be today. That's part of what time has done for me. Even with my health issues, I still feel strong in spirit. When I'm writhing in pain or struggling to breathe, I have to trust in my mind and my soul to keep me focused on healing. And when my strengths develop cracks, as is inevitable in serious situations, God is the caulk that seals and keeps me together.

Don't get me wrong, I have my moments (or weeks or months.) Keeping my faith allows time to pass, and I eventually find myself in a better place. Just as I want to see the good in people, I want to embrace the goodness of this force that holds me up when I'm falling. It's not in my imagination.  Since 2009, I've been in the ICU or SICU on a ventilator four times. That's not just some scientific healing of a skinned knee or the intervention of practical medicine for a throat infection, Those were miracles. Divine intervention that allowed me to live rather than die. I don't need anyone else to believe. It's enough that I do.

Our circumstances mold our beliefs, which is why it's unfair to judge others. If you believe, use your faith for understanding and tolerance. I can't blame or judge others for not believing, because I don't know the circumstances that led them to their lack of faith. I can only ask the same of those who don't believe. Grant me the respect to trust I have my faith for a reason and don't judge me. A riddle of sorts, or perhaps a recipe. I know not how to survive my life without my faith. It brings me comfort and strength. I've lived through things that make it impossible to not believe in a higher power.

People ask how I can believe in God after all I've been through. My answer is, after all I've been through, it's impossible not to. I've witnessed things from within that defeat logic and science.  I've had experiences when I've felt a flow of warm, unconditional love from something much greater than myself. There is a calm, loving presence infused in my heart. It's something that defies an exact definition, but it's real. For me, it's real. That's why I believe. AMEN!

The Truth of Spring Cleaning

While it is almost summer, I am still bogged down with the whole spring cleaning process. Whoever started this process must have had a small closet and no hobbies, and was obviously able to drink copious amounts of wine throughout the process. My closet is bleeding with my various hobbies, each stuffed in separate totes.  I can never understand that all the stuff I threw away the past year seems to be reincarnated to the stuff I need to throw out this year. How did I look at this year's trash as last year's gems? It's a never-ending quandary that will likely never be answered. I've made peace with that.

As I've started on the archaeological dig into my closet's piles of totes and boxes, I have a lawn bag ready for my former necessary unnecessariables (my word.) My first tote was a treasure chest of old journals.  They serve two purposes. I write down all my meds each day along with any medical issues that are going on. It keeps me on target. It also enables me report to my doctors exactly what's going on at any given time. It's become an empowering tool that helps me have some control of my health and helps guide my doctors and I to make the best decisions for my health. I highly recommend this to anyone with chronic health issues.

Then there is my spiritual cleansing, aka my writing. It has a Tourette's Syndrome-type personality whereby I may not write for weeks, and then one day I get a surge of ideas and I grab whatever is closest to me. I've got napkins, matchbooks, receipts, etc., but I usually grab my journals.  I write down those thoughts, keeping them safe in something I won't throw away. It's a journey through history to read those scraps of my heart in writing.

So there I sat going through perhaps the smallest tote in my closet. I often discard the medical info after a certain amount of time, and I keep only my writing spasms. The first journal I opened was from 2010  when I had a very major surgery. The words I read brought tears to my eyes. The writing was beautiful (if I do say so myself) and raw and overwhelming. I could almost feel the physical and emotional pain I was going through at that time. It took me back like a time machine, giving me a view of Jessica then vs. Jessica now.

 I read some of it to my mom, and she replied, "It's so good, but so dark.  That's not who you are now."

That was so validating to hear. The words sounded like someone I used to know wrote them. A familiar stranger. There I was digging through my closet, and I found old bones from an old me. An ancient text about things long passed. That's not to say everything is peachy keen now, but I feel that I'm in a better place spiritually and emotionally. There are changes in my life that have allowed me to heal peacefully rather than stressfully. Healing has various degrees of stress, but it's the where and the who you're healing around that can make a big difference. Different doctors are amazing gifts, too.

Healing is a puzzle that takes time. Reading about where I was compared to where I am now was so cathartic. It took the term "spring cleaning" to another level. We all go through stuff that is hard and life-changing. Everyone has different ways of holding onto the feelings surrounding those times.

You don't have to have journals or thoughts written down. There is a wardrobe of reactions and thoughts most people have within them.

Within your spirit, examine those things that no longer serve your greater good and let them go. Stick them in that figurative trash bag and toss them out. Purge yourself of that which weighs you down with negativity. It's a new day. The lessons you learned from those experiences have already been woven into your souls. Clean your mind and heart of the baggage. Eventually we all have to accept our perfect imperfections and give ourselves permission to be loved just as we are. It's not likely to happen all at once, but in pieces as we go.

 A counselor once told me not to view life as a linear process, but rather as a web-like journey. On that same note, every movement on the web will offer a time to heal past hurts and to love ourselves wherever, however and whoever we are. In truth, spring cleaning is just a convenient analogy for an ongoing process. Granted, I started writing this in early May, yet just finishing it in early June. So my cleansing is retroactive but progressing, one day at a time.