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Tag: Illness

Den of Discontent

Den of Discontent

 

In this den of discontent

Where the echo of love sounds

The emptiness of dissolution

Seeps into a vacant battleground

 

As inches become miles

The sting of separation flares

Leaving lonely and anxious skin

Searching for oxygen in precious air

 

Holding what breath remains

One must cross this blockade

While memories guard the gates

All passage is betrayed

 

Who will move with mighty mercy

In lonely corridors of perdition

Slaying dragons of animosity

Capturing the reins of admission 

 

Who will speak the words

Tender, forgotten and true

Filling this hushed vacancy

Forever abandoning the coup

 

 

This past year has been incredibly trying yet transformative in the most interesting of ways. An age-old truth rings true. It often takes the darkest of nights to appreciate the return of the light.  This past year, in the depths of darkness, everything I saw as “me” had been slowly stripped away. Likewise, in returning to the light, everything that was and is truly important has been revealed. 

 

I have not written anything for quite some time. This is because this illness is attacking my brain as well as my body. In a cruel twist of fate, the part of my brain under attack is for semantic interpretation. It takes much effort to write these days and a great deal of review to be sure what is on the page makes sense. Humility has been a constant theme of late.

 

There is a reason I write rather than speak. Writing has afforded a safe space for my thoughts without the need for conversation. Writing has always been a solitary activity for me and I like to walk through the words on the page rather than run. This peaceful unfolding of thought is relaxing and a necessary release of emotions that course throughout my body.

 

These emotions reside in a deep well, filled with the turbulent waters of contemplation. My well has been artfully capped for a lifetime under the guise of “self-control”. I may sound thoughtful when I speak, but this is a self-imposed exercise to avoid the tsunami of emotions that would most certainly flow out at any given moment. 

 

In yet another test of patience and humility, the area of my brain that is damaged, uncaps the well and makes it more difficult to hold back emotions or assess social cues. All these years trying to hide a part of myself only to have it all come rushing back in full view. The divine works in strange ways. It has been a year I laughingly call the “trail of tears” as crying has become a leaky valve unable to be shut off.

 

Thankfully my support network has stepped up in the best of ways. It is often in the darkest of nights in which those with pure intentions remain and those with hardened hearts move away from the discomfort. My forever partner, Dylan, has been my absolute rock. He has wiped my tears, listened to my overthinking, and held me tight when no words could soothe my broken heart. He has given so much of himself to me this past year and I am forever grateful. My son Zack has also demonstrated his ability to show great compassion. He is a busy young man with a partner and a corporate level job to foster, yet he has always made time to call and check in. He does not only speak but listens, a key component of compassion and a sign of true emotional intelligence. I am blessed beyond words. They are both porch lights in the darkness, guiding me home time after time. 

 

I wrote the piece above, not about a specific relationship or hardship, but about the many things we must come to terms with in finding peace. It has become clear, a great deal of living and learning is letting go of prideful identifications. This peeling away of layers takes many years and leaves us completely naked and exposed at the end of our lives, just as we arrived.  

 

On reflection, hardship is a great teacher.  The past year has required me to dig deep, evaluate what is important and let go of the many calculated ways I present myself to the world. What remains is just me. The baby that arrived into this world, wide eyed, curious, innocent and accepting. The young girl that did not put harsh expectations and rules on herself. The adult who did not think of career, money, or success as a measure of a life well lived. This is a person I am glad to meet at long last.

 

Permission to Just Be

Permission to Just Be

 

Listen.

Remain still and you will hear

The new. Rustling the curtains and

Throwing open the windows while shouting,

Now is the time!

 

Listen.

As the winds of change rush forth

Into the wild, unafraid

Challenging all that you know

Teasing the mystery

 

Listen.

Stand in the center of the storm

Fell the calming stillness

Truth being the quietest voice in this void

Always there, but calling little attention

 

Listen.

You know this sound well

Unlock the chains and

Throw out the endless lists of excuses

Now is the time!

 

Listen.

Follow this whisper

Walk through the window and

Allow

Let yourself be free

-Lavinia

 

 

Living at a campground during a pandemic is an opportunity to watch the natural world up close and without distraction. While we have no campers due to the closure, we continue to see the resurgence of nature in all of its glory. In the past few months, we have been privy to the birth and death of a variety of animals and plant forms. This heightened connection to the sacredness of this ground has heated powerful emotions within.

 

It is difficult to put into words the beauty of this place. For many thousands of years, humans have walked this beach and for many thousands of years humans have neglected it in the very worst of ways. How easy it has become to ignore what is right in front of us, while distracted by the desire for money and things. All having little to do with this organic togetherness.

 

During my morning bike ride, I was struck by a connection to something beyond. Looking up at the mountain side, across from the beach, I was certain I felt the presence of an ancient woman. This vision of a native Chumash woman standing boldly on the edge of the cliff, looking at the very same landscape as myself, brought tears to my eyes. 

 

On this day, feeling a strong tether to the past, I wept for this ancient and wise woman and felt her own tears falling down the mountainside. She and I are the same. We are from different times with very different pressures, but the transformation of middle age is familiar ground. Her powerful energy was emanating so intently, I had to step off my bike and gaze at the mountain. Hair flowing, back straight, eyes casting out into the eternal distance. She is me and I am her. I felt her deeply and mourned the loss of an ancient feminine circle of faith, trust and love.

 

As women age, we have historically been marginalized. While it may be nice not to be seen entirely as a sexual being, it is a strange transformation to feel invisible from the rest of society. Women are the caretakers, nurturers, mothers, daughters and lovers. Right when we begin to step freely into our feminine power, trusting the wisdom of the ages, the rug is pulled from underneath. A strong woman becomes gruff, or “bitchy” while a strong man remains a leader. Why our society has chosen to abide by these perceived roles I will never understand. It is this pain that I shared with the ancient woman, an understanding of how difficult it is to redefine ourselves and find our place in this ever-changing landscape.

 

Couple this with my recent medical crisis, the societal walls of productivity began to close in, leaving me choking with expectation. If not a working professional, then what? I am so much more than what I do, this is true. My true love is writing and will always be, but with a job title, health insurance and retirement, I am tethered to the rest of society by these expectations. 

 

This morning, feeling the breath and tears of the wise woman, a certain permission was granted to just be. Be sick, be aging, let my hair turn gray, be wild, be free, be everything I have been conditioned not to be. She and I sing the same song from these hills. We sing to our destiny, our purpose and our fast approaching departure from this place. With a desperation not found in early life, middle age women feel the beat of this song resonating in every act of self-love, acceptance and grace. We sing to the power of the ocean taking some of its strength for ourselves. If the waves can persist billions of years under unfathomable stress, we too can step into our power, embracing this eternal energy with the wisdom only found by living a beautiful and flawed existence. 

 

This knowing peppers the landscape with the brightness of the universe, a simple yet breathtaking vow. Finishing my ride, I begin to feel my grandmothers and see their joyful smiles through the morning fog. They are here with me and gently reminding me all will be well. Their strength lifts my spirit and a calmness washed over me as if the tide against these shores. My truth is my own, yet I am never alone. Women from the ages walk with me, guide me and lend loving support. Now each morning, I look to the mountainside and feel her presence. She feels my heartbeat and for a few moments we sing together.

Illness as Teacher

Illness as Teacher

illness

I am in most cases an intensely private person. In fact it takes a while and a good degree of trust before I share intimate details of my life with another. I have no problem talking about superficial things, what I ate for dinner, a movie I have seen or my new exercise plan.  I do not consider these things intimate and can make polite conversation with others as needed.  It will take much more from an interested party to find out what my true thoughts and opinions are; I hold them closer to my chest. It will also take some time to begin to understand my world and the things the matter deeply to me.  Those that love me see me completely for who I am.  

 

“A best friend is the only one that walks into your life when the world has walked out.”

Shannon Alder

 

One of the things that I have held closely in the past few years is my illness. I have Multiple Sclerosis.  Just writing it is difficult because I do not believe in labels or illness as a definition of a person. It is never the first thing on my mind and I do not picture myself as “sick”. I have had to share this diagnosis with some at work due to scheduling issues with treatments and can say that most of the time I have felt conflicted about doing so. My neurologist calls me “high functioning” in that I do not wear my disease on my sleeve.  One would have to look very closely at me to see any obvious symptoms. This can be both a good thing and a bad thing.

 

“Worry is itself an illness, since worry is an accusation against Divine Wisdom, a criticism of Divine Mercy.”

Said Nursi

 

First the good. As a former dancer I have exceptional balance and good muscle condition.  This has been helpful in hiding otherwise challenging symptoms.  I am able to go to the gym each morning and consider it one of the most important things that I do for myself in order to maintain physical strength. I would venture to say that I am in better shape than most and I work very hard at this. I love to hike and I am just not willing to give that up. A relapse last year included moments of disequilibrium that I was able to hide from most of my colleagues. Sure the room would spin for a moment, but with my good balance people were none the wiser.

 

Now for the bad.  Because I do not look sick, people do not understand when I need to sleep nine hours a night, eat a restricted diet and manage my stress. It appears as if I am uptight or unwilling to be flexible.  As one that would never use my illness as an excuse, I rarely correct others when they hold these opinions.  MS is nothing different than diabetes, depression, high blood pressure or any other chronic condition.  It is never what defines me but rather just another part of who I am.  When I am feeling great I sometimes even forget that I have it.  

 

Why write this now?  Illness is usually something that people hide from others, afraid of judgment or rejection. I guess I have gotten tired of the charade and am confident that others feel the same about their personal challenges. It is exhausting to have this element in my life and feel as if I must hide it from everyone to keep my job or find love. I know that I am so much more than this body and am thankful for the opportunity to learn through illness. Before I was diagnosed, I admit that I was far more judgmental than I am now. If someone was sick, I wondered what he or she did “wrong” to become that way.  If someone was depressed, I wondered why he or she could not be free of the darkness. I prided myself in doing everything right. I exercised, ate healthfully and took care of myself.  I was the consummate perfectionist. It was not until I went through severe emotional stress during my divorce that my diagnosis was initially made.  Unbelievably, I had been living with MS for a decade according to brain scans and never even knew.

 

“Become slower in your journey through life. Practice yoga and meditation if you suffer from ‘hurry sickness.’ Become more introspective by visiting quiet places such as churches, museums, mountains and lakes. Give yourself permission to read at least one novel a month for pleasure.”

Wayne Dyer

 

What have I learned from this experience so far?  

 

I have learned not to assume anything in regards to others lives. They may wear a happy face, but underneath be in chronic pain, carry deep sadness or be in severe distress. Everyone and I mean everyone is fighting a battle in some way. People are so nuanced and complex.  It is absolutely a disservice to others to pretend I understand what they may be struggling with on a daily basis.

 

I have learned that some will walk away, unable to see me suffer.  It makes people uncomfortable and I can see why.  It has taken a few years for me to feel at ease with this.  I understand that the right person will see me and not this disease. I do not hold back in my life and have so much to offer.  I am loving, hardworking and fun.  I embrace and appreciate life so much more than I did in the past. I am absolutely worthy of love.

 

I have learned greater empathy.  Going to visit my doctor is the most difficult thing for me in that I see others not as fortunate as I that have more severe forms of this awful disease. I have found this to be an incredible opportunity to show kindness and compassion for those in much greater need and feel lucky to be able to give in this way.

 

I have learned patience with myself and with others. If I am not feeling well I have to be patient with this body I have been given.  That could mean a shorter gym session, resting on the couch after work, or saying no when all I want to do is say yes. At the same time I have learned to be patient with others when my limitations frustrate them.  I am blessed with a beautiful family that just knows when I have reached my limit.  They say they can see it on my face when I “hit the wall” and encourage me to rest.  

 

I have learned to relax more.  Seems strange but for this hard working German girl with Minnesota farming blood, I pride myself in working hard and I mean hard. I don’t think I truly knew how to just sit and relax until my diagnosis.  I have found joy in doing a puzzle, reading a book, watching a movie or just being with those that I love without the constant pull of multi tasking. It has been freeing on so many levels, a reason to stop and just be.

 

I have learned to forgive. I have forgiven those who were careless with my heart, those that I believe progressed my illness by stressing my system to its very limits.  I have also forgiven myself.  It is all too easy to blame oneself for autoimmune illnesses and disease.  Why me? What could I have done differently?  It is a dangerous road to travel and one that I have come to peace with.

 

“We are not victims of aging, sickness and death. These are part of scenery, not the seer, who is immune to any form of change. This seer is the spirit, the expression of eternal being.”

Deepak Chopra

 

Finally, I have learned not to set limits on myself. I am a mother, daughter, friend and coworker.  I have endless possibilities in front of me and welcome new challenges. One of my favorite humans in the world is my neurologist, she is my Yoda. When I was diagnosed, she made sure to tone down my fatalist perspective by reminding me that people live with this illness and are quite productive. They fall in love; have families, meaningful careers and wonderful fulfilling lives.  She gave me strength when I could not find it myself. My wish for those reading and struggling with something is that you know you are not alone. You have a legion of others with you on this journey, lending you strength when you need it most.  Live your life joyfully, smile at the sun and breathe in the fall air.  Your life is beautiful simply because you are here.  The circumstance is of no importance. From one soul to another my wish is that you live with an open heart and welcome each day with a smile. I do and am forever grateful for illness as my teacher.