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.

Memorial Day

As with most holidays, our culture has created a  tradition whereby holidays become associated with celebrations of no relation at all. For example, Christ's birth has become all about Santa and gifts. The death and resurrection of Christ has become all about colored eggs and an over sized bunny rabbit. Memorial Day seems to be about a three-day weekend and burgers.

There are men and women in war zones all over the world, protecting my very right to write these words and to live in this democratic society. Yet there is no significant way we, as Americans, do to make our gratitude known for all who have served in our military, past, present and future.

It's ironic, because I venture to say that the people who get a three day weekend are NOT those serving our nation. The males and females in the military are scattered around the world, seeing and doing things no individual ever should, existing in rough environments far, far away from their families. They aren't the ones enjoying the cookouts and long weekends.

I know our society isn't likely going to change its way to celebrate a holiday, but we can all take steps towards a change. Many of us have family and/or friends who have served in our military. Going forward, all it takes is a phone call or a text to express our gratitude. Love is a great ways to show appreciation, and it costs nothing.

God Bless America and all those who are serving our great nation, yesterday, today and tomorrow!

Memories of Mimi

I am so blessed to have one living grandparent, my grandma Evelyn Jorgensen, aka "Mimi".  I have so many memories of growing up with her in my life, so I thought I would share some of them for Mother's Day.

When my mom went into labor with Keith, I went to stay with my Mimi and Bapa. I recall her putting a steel washtub in the courtyard of the home I now share with my mom. She filled it with water and dish soap, and I was allowed to strip naked and take a bath out among the squirrels and birds. It was the best bath ever. I felt like a cross between a princess and Mowgli the Jungle Child.

She would come pick me up at my preschool at Jeffrey Mansion in a red pickup truck and a mink coat. The macaroni and cheese standard was set at the top with Stouffer's Mac and Cheese that she cooked in the oven, always having a bubbly top layer. I would take her concentrated frozen orange juice cans and she's throw it in a blender with some ice, and voila, a delicious orange smoothie. The poor woman was probably always out of O.J.

I spent most of my time either riding Charlie the Wooden Horse around the driveway or playing with a stuffed camel named Noodles who had long, spider-like, black eye lashes. To this day, I'm still searching for a mascara that could make my lashes measure up to Charlie's.

To sum it up, I was spoiled.

As I grew up, Mimi and I started developing a more mature relationship. I was standing in her kitchen when she asked me if I had fallen of the roof yet, and I had no idea what the heck she was talking about. I'd been having my period for years, but I wasn't one to play up in the gutters. I would visit she and my grandpa in Florida, and we would shop and eat and do all kinds of girlie stuff together.

I can't say exactly when we became good friends on TOP of having a great grandma-granddaughter relationship, but it happened. After my grandfather passed, I would go visit her in Florida, and we would have long talks over tea sitting in the living room of her condo. At some point we called our chats "pouring tea", as we were pouring our love and thoughts into each other. To this day, she still has a Willow Tree angel holding a tea pot that I gave her one Christmas. I have one, too. It always reminds me of her.

Mimi and I have done a lot of growing up together. We've had the pleasure of truly getting to know each other. I've heard her stories of growing up as one of ten children in a small town in Michigan. She doesn't travel anymore, but her stories keep the memories alive.

Our family's "Old Polish Chick" is 91 years old, and I love her so much. I just wanted to share a few memories I have with her. I am a better person from having her as my grandma.

Motherhood as I Know It

Ode to the empty armed mother,
Song to my wombless child,
Forever the gravesite watcher,
Sadness hits me like the tide.
I see his face in the trees,
I feel his life in the breeze,
Wish I could bottle his spirit,
His life I couldn't save in me. 

My son Gabriel, so long passed away, is ever a sadness and a blessing at the same time. I watch for him, almost like Rapunzel in the tower, only it is I who seeks his spirit, and wish I could send him that lifeline that was destroyed in my womb now twelve years ago. Such a glorious sadness, an unrequited love for something I wanted so much, yet the choice was not mine to make.

The exhaustion in my body after so many years of illness now knows that his passing was a three-fold result of fate. Had he been born, he would not have survived, nor, likely, would have I. And even if we both survived, we both would have faltered in the storm that has come these last twelve years.

A sadness and joy that is so difficult to describe, how one can feel them both simultaneously is a mystery I still can't solve. I seek him out in ever breath, in every moment. I know he's in me as much as my own soul is within me. Or I am within him. Perhaps my survival has been by nothing less than his life sacrificed, for my life survived.

No apologies for any sadness induced by your reading these words that help me heal and grow as I continue to cope with the loss of a child. Of actually two children, only the first was lost in those first weeks and became the "mole" in my partial molar pregnancy. Such things I did not know existed. I was told by a neonatologist around my third month that I had "a healthy baby growing in there". It wasn't until early in my sixth month that every maternal hope I had was dashed.

I am always processing this loss. Once a mother, always a mother. I know my baby boy lives on in me, as does he or she that left so, so soon. It was all ended way too soon. Mothers, hold your children close. Squeeze them an extra squeeze for me this weekend. I  know Gabriel would want it that way. Blessings to all on this coming Mother's Day.