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Posts Tagged ‘illness’

“Be joyful, though you have considered all the facts.
Quote by: Wendell Berry

(Prologue: I have grown to love life and tire of people wondering if I am for real.  I am. I am human, but I am a thriver. Regardless of what is tossed my way, I will be ok. Always. I have a choice on how to move forward and I choose . . .)

Life happens.

With every breath, I get to decide how I will emerge and how I will face the holy world that I have and will continue to experience.

Struggles have been a part of my life – never by choice. In response, I have made a conscious decision to NEVER allow them to define who I am.  The trouble is that there are some people see my life as really hard and need to focus on just that. I see my life quite differently – full and blessed. The gifts have come in all shapes and sizes. Each passing moment has lead to new adventures – some simply divine, others challenging, and still others painful.  Yet, regardless of what has transpired in my life, I have come to find the treasures that have made me the person I am.

Don’t get me wrong, I am a work in progress.  I have had days that leave my heart broken with endless tears falling. But those days have been far and few in between.  When I look back at the trials and tribulations that I have endured, I choose to see the beauty that is often a consequence of life’s difficulties.

Life happens.

During some of the segments of my life, I have faced a few too many arduous junctures.  Ultimately, each has led me to find inner peace, phenomenal opportunities, and many open doors.  I am who I am because I have always found light, maybe not instantly, but eventually.

The last few years have had a few challenges. I recovered from the nightmares that plagued me once my son recovered from years of serious illness, I navigated professional challenges that left me jobless, and I treaded life’s waters as a single mother. Regardless, none of it destroyed any part of me. In response, I have found that I have special friends, people that will help me in countless ways. Struggling alone has never happened for me. My amazing friends have nurtured not only me, but my precious sons too.  Whether I needed emotional support, financial help, or a hand, my friends have been there for me.

Through it all, there is a inner joy that sustains me and allows me to thrive.  When I smile, my entire body feels the reverberations; no wonder, I am drawn to feel happy. I want to share my excitement with every one I meet and sometimes I am lucky enough to do so.  I am not certain where I found the inner joy that sustains me even as I navigate tough realities, but I have.  Yay!

Creatively, I am becoming the person I want to be.  My writing soothes my soul and confronts life’s storms.  Over time, I seem to have impacted others with my words. Wow. . . how sweet is that?  And I have also taken up drawing and painting (just a little); I even have a new piece of artwork that I have been creating.  None of this would be what it is if I hadn’t experienced life in the ways I have.

Educationally, I have learned to trust myself as an educator and to push myself to make more of a difference to those that I mentor and teach.  Only once I believed in myself fully was it possible for me to create and then share my creations with others.

And spiritually, I have found my voice.  Whether I am drumming, chanting, praying, or hiking, I find that I am becoming connected with the earth in profound ways.  I have grown to love how I walk within the world.  Sometimes I find myself dancing, and moving in ways that I have never done before.  I am alive, fully alive.

Nothing has ever destroyed my spirit. Even when I have had moments that I felt broken, I emerged stronger with tools that allowed for healing of my heart, my mind, and my soul.

A long time ago, I learned that while the world is sometimes dark, my spirit is full of light.  I always have the ability to choose to see the light and if I am really honoring who I am, I can be the light.

Only when I live in the light will joy exist within me.  So, I guess I need to choose light; there is no option.

Sunset near Pupukea Hawaii; Photo coutesy of  Kathleen Kendle

Sunset near Pupukea Hawaii; Photo coutesy of Kathleen Kendle

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I believe that every day is a gift, not to be taken for granted.

Eight years ago next month, my son Aryeh suffered his first debilitating headache. From that first headache until now, life was forever altered.  In the days, weeks, months, and years that followed, I learned that life as I knew it could end in a moment’s notice. The good news for us was that while life drastically evolved, my son thrived in ways that can described as a miracle.

I AM ALIVE!

I AM ALIVE!

At 13 years old, the doctors found 6.5 centimeter arachnoid cyst wrapped around my son Aryeh’s brain.  For over three years, Aryeh suffered from horrific pain, life and death struggles, and deep sadness; we all suffered from loss.  For anyone that has experienced the serious illness of a child or any loved one, you know how quickly life changes after a serious diagnosis.

For years, Aryeh couldn’t handle bright or flashing lights, loud or sudden noises, kinetic energy or any movement.  Our very active household was silenced both physically and metaphorically.  Dovi, Aryeh’s little brother, was the most impacted.  My once very kinetic child was forced to quiet his body and spirit.  And with the silence came the fears that mounted with each passing month. Would Aryeh survive the hell that was taking over our lives?  Would the two brain surgeries save his life? Would his pain ever end? So many questions, so few answers. . .

Every one that knew Aryeh watched in horror as his pain could not be managed. To help us through this journey, we learned to find the gifts – some spiritual and some tangible. One precious gift was both. A group of friends and staff members from Fairhaven School tie-dyed a queen set of sheets for Aryeh. The sheets arrived days before Aryeh and I were to leave Washington, DC to go to Los Angeles for Aryeh’s second brain surgery. Those sheets stayed with Aryeh from the moment they came into our house through the many years of Ayeh’s illness, and beyond.

As a mother, I can’t even begin to explain how impactful the gift was not only to Aryeh, but to his whole family too. Aryeh’s friends knew that he absolutely loved and still loves tie-dye. At 13 years old, Aryeh surrounded his bedroom walls with tie dye wall hangings and wore only tie dye shirts.  🙂 While this might have made his grandparents a little nuts, it put a huge smile on my face!!!  Tie-dye t-shirts are still one of Aryeh’s favorite pieces of clothing (and for that matter Dovi’s too).

The good news is that we were fortunate to have amazing friends who made and sold their wares at Milky Wave Tie-Dye; Aryeh was also lucky to have friends that knew him so well!

The sheets became a comforting treasure very quickly.  The fitted sheets and pillow cases were immediately put on Aryeh bed and pillows.  Aryeh only stopped using them recently when they became threadbare. And when we went to California for his surgery the flat sheet came with us.  In fact, while he was in an induced coma, his father and I wrapped him in the sheet and just made sure the sheet was always on him. On one such day, a nurse came in and told us that the sheet was in his way and we needed to move it. During that particular conversation, the nurse enlightened us by telling us that he didn’t need the sheet nor would he know if it was on him or not.  Needless to say, the sheet stayed, but the nurse was asked not to return.

Once we came home, Aryeh reunited with his pillow cases and fitted sheet; the flat sheet however was placed in a drawer under his bed for safekeeping.

A few years after Aryeh’s brain surgeries, I was learning a chant that lifted my spirit and moved my soul. As I prepared the chant for a service I was leading, Aryeh walked into my room and said, “I’d like the words of the first line to be on my tallit* (prayer shawl) one day.” The words were poignant and perfect for Aryeh.  The Hebrew/English chant written by Rabbi David Zeller (of blessed memory) was:

I am alive. (x4)
And who is this aliveness I am? (x3)
I
s it not the holy blessed ONE.

http://davidzeller.org/aliveness/ – You can hear a snippet of the song from the first track of the CD on the website.

Once Aryeh decided that he wanted the words ‘I am alive’ (in Hebrew) to be on his tallit, then it only seemed natural to use his tie-dye flat sheet. Unfortunately, it took Aryeh and me years to make it happen for him, but last week we did it!!! With the help of our good friend Laurie Dietz, we were able to have the words I am alive (in Hebrew) embroidered for the tie dye tallit. And then I tied the tzitzit, fringes, for his beloved ritual garmet.

Aryeh in his amazing new tallit.

Aryeh in his amazing new tallit.

Full Circle
While the creation of the tallit began with illness, the tie-dye ultimately became a symbol of living and thriving.  Aryeh is very much alive and loving his new tallit too!

*tallit – A shawl-like garment worn during morning services, with tzitzit (long fringes) attached to the corners as a reminder of the commandments. Sometimes called a prayer shawl.

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Many of my friends know I really do love tie-dye!!! In fact my entire family loves tie-dye!

What I have grown to appreciate is that our friends actually acknowledge our love of tie-dye in a variety of ways.  Over the years, we have received a few special presents that included tie-dyes of varying types.  When my son Aryeh was sick, his friends made him tie-dye sheets that actually covered him and surrounded him when he was recovering from brain surgery.  On other occasions, friends have found great tie-dye shirts and even a scarf at a thrift shop.  And then last week a good friend found an amazing t-shirt at a Grateful Dead Weekend.  And guess what, he mailed me the shirt this week! Why do you think he did this? Just because. . . . .

TyeDye6

Over the last few years, I have thought a lot about how I can connect with people.  I am not the best in staying in touch, but I have been  intentionally trying to change my ways.  Still I know that when I am not staying in contact, it does not mean that I don’t love someone; it is because I have been honoring my need for quiet time in a world that is often too kinetic.  There is always something to do.

Yet, I have to say that I am profoundly touched  by those that somehow find the time to give in any way.  I love when friends and loved ones drop me a card, send me a small treasure, or give me a new rock/stone for my collection.  I never take the small and large acts of kindness for granted; I am in awe of each and every person that reaches out.

When my older son Aryeh was critically ill, people went out of their way to send cards, make us meals, or visit for just a few minutes.  People cared.  Once when Dovi, my younger son, was really sick, an acquaintance came over to give me a new Book of Psalms because she knew that I like to say/chant psalms as part of our healing journey.  To this day, tears come to my eyes nearly each and every time I use my book of Tehillim (Psalms); since I use it nearly every day, I am wondering if I should have saved those tears in a bucket. 🙂

Recently, a new friend took time to find chants that she thought would touch me and then she took time to create a few CDs for me to cherish.  Another new friend has been sharing some amazing musical compositions that he wrote, nearly every one of them takes my breath away.  They are beautiful!  People keep sharing, their music, their art/photographs, their words – Just because. . .

How awesome is that?!?!?!!!!!

With all this in mind, I have been sending ‘thinking of you’ cards to people for every occasion.  The funny thing is that I sent out a ton of cards over the last few months and I am not sure that all of them reached their destination.  Unless people acknowledge them, there is no way to know.  (BTW, I believe a large stack was lost by the mail service; but I can’t know for sure. LOL!) And you know what? I love that I am learning to give just because. . . 

Through watching the many people that have touched my life through giving in large and small ways, I am learning to be a little more thoughtful.  Sometimes I pick up the phone and call an old friend, just because it feels like it is time to do it.  I really do love forever; I care in profound ways.  Today I am trying to show those I love  and/or those that I care for how much I do by taking a moment to reach out.

To give and to receive is such a gift (physical and/or emotional). I love when people do something just because they can, just because they care, just because. . . .

One thing I don’t want to leave unsaid is the power of giving to a stranger.  When Aryeh was really sick, I was blown away by the strangers that reached out to help us over the years.  Why did they do this? Just because. . . . And now as I am in the midst of reaching out and asking for people to help us in our journey to move east by giving to our Go Fund Me account http://www.gofundme.com/g8o220, I have been completely humbled by the lovely souls that have given to the fund without having met me.  I have also been brought to ‘happy’ tears by those that know me. I really never expected that people were give.  I was praying and hoping they would, but not expecting. Wow.

Whether we send cards, give tie-dyes, make meals, or ________ (you fill in the blank), know that giving always makes a difference in the lives of those we touch.

May I remember to always give in a loving way,  just because. . . . .

With blessings & light,

Chava

PS – When I buy Tie Dye for my family, I only buy from Milky Wave Tie Dye in Opal, Virginia; it’s our family tradition.  We found this Tie Dye shack years ago; it was a gift in every way.  The moment my family walked into the store, we became a tie dye family and the family that owned Milky Wave Tie Dye became our family too.

PPS – Take a moment to like Milky Wave Tie Dye on Facebook – https://www.facebook.com/milkywavetiedye?fref=ts

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Don’t be afraid to tread when you can’t really swim
Dance in the rain and find the rainbows when darkness prevails
Find the good in every challenge that crosses your path
And always soar and reach for your best.
(Excerpt: Sometimes Life Gives Us No Tomorrows
written by Chava Gal-Or)

Have you ever had those moments when your were furious about something only to find that you may be looking at the whatever is happening the wrong way?

One of the most significant practices of my life is to try to find light in the midst of life’s challenges.  I even changed my last name to honor the way I hope to walk in the world.  My last name Gal-Or means wave a light. Years ago I decided to acknowledge that I have mostly been able to find light in darkness or within troubling moments AND I wanted to remind myself to continue to walk the world in this way.  Having said that, I also realize that I am human, there are times when I have to take a moment and reflect.

Over the last few days I found myself reflecting that I really do need to pay attention and to take a deep breathe before allowing frustration to penetrate my heart and mind. As conscious as I am, I am taking a few minutes to openly share exactly how I find the good in the following scenarios.

  1. Accidents happen.  Often times I count my blessings when I am stuck in traffic; I find myself feeling relieved that somehow I was blessed to be running late and missing my potential role in the traffic accident which is just ahead of where I am.  At the same time, I pray for all that are involved in the accident; I never take spiritual or physical health for granted.
  2. Recently, I lost my position at Temple Emanu-El, a local congregation, because of their financial challenges.  For the most part I have chosen not to share the impact of that loss too fully; it wouldn’t serve me well. What I will say is that it hurt my spirit very deeply.  And yet out of the pain, I have come to grips with some spiritual and emotional needs  that I may not have faced so directly if I had not received my walking papers. Living consciously is a powerful gift that I am giving myself.
  3. A few nights ago, my son left all the lights on in the house.  Sigh.  I am so sensitive to light and it ultimately woke me up; I needed to wake up fully so I could turn off all the lights. 😦  To say that I was thoroughly annoyed is an understatement.  So, in order to distract myself and manage some of my agitation I went on Facebook to check out was going on in the world.  And what I found was a friend that was in serious crisis and needed me.  Two hours later, I was profoundly grateful that I could be there for my friend and to help her manage some intense darkness.  If it weren’t for my son’s mistake of leaving the light on, I wouldn’t have been there to listen and to offer some potential ways to navigate all that she needed to cope with.
  4. How many times have you been at a doctor’s office only to be stuck waiting an extra 30 minutes or maybe even an hour?  Well for nearly five years, we were blessed with doctors that didn’t rush my then teenage son through their office visit because they had other patients.  We also had doctors that created a slot for our son because he was too sick to wait.  After such a positive experience with so many medical practitioners, no longer do I get agitated when I have to wait.  Having a doctor that is compassionate and present when we most need him/her makes a world of difference to me.  Ultimately my son emerged healthy and vibrant, but the journey to get there was full of loving souls that really took the time needed to care of my son when he needed it most.
  5. While initially, I may feel frustrated when I get stuck in the Car Repair place or anywhere, but over the years I have come to appreciate the ‘accidental’ gift of time which allows me time to walk over to the coffee shop and take some time to write and people watch.  To me there is nothing better than having time to sit quietly and write and/or people watch.

We never do know what is on our horizons; life happens and so does death.  My job is to try to make the best of every moment.  Sometime the moment is all we have. . . .

Oct 20 - sunrise Pantano WashMay we all be blessed to find the light shining in the horizons.

With love, light, & blessings,
Chava

 

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Listening To My Body: Allowing it to Heal

This week I got slam-dunked with a virus.  In truth, I know that illness came to me not because I stood near someone with a virus, but because I needed to have some time to sort out my feelings and heal from all that has been going on in the last few months.  And perhaps, I got sick because I needed to just stop moving for a little while and rest.

Yesterday, I don’t think I left my bed for more than 20 minutes, maybe even less.  As my fever remained a solid 101+ degrees (I normally run about 97.1), I was fairly miserable and I physically could not move.  Today, my body’s temperature seemed to be quite normal, but my body wasn’t buying it.  Today’s activities included showering, laying down, going to the chiropractor, laying down, taking Maddie on a short walk, laying down. Each activity took no more than 15 – 30 minutes, each nap or resting took about 2 hours. . . .and I am still wiped.

Sick June 2014Stop. . .Listen. . .What a concept

My body is telling me something. It is telling me to stop and frankly it isn’t giving me a choice.  Even if I wanted to go for a long walk or to work, I couldn’t do it.  Even my time on Facebook or blogging has had to be short, I simply do not have the energy or ability to do much more than rest.  And in truth I fear the results of me ignoring my body.  I fear serious illness.  So, while I can’t afford to refrain from working now that I am paid hourly; I also can’t afford to wipe myself out.

This week, I needed some time to process all that has been going on in my world and to make some decisions about how I will proceed professionally and emotionally.  My body is making sure I listen to my need to process by not allowing me the opportunity to move.  The last 7 months have been hard, really hard.  In fact much of the past several years have been a struggle.  I have never focused on the challenging times or allowed them to control how I walk in the world, but that doesn’t mean all has been ok.

There is a plus side to all of this.  In this moment, I am feeling optimistic and clear; my life and my children’s lives will be good.  Whatever we do, wherever we go, life will be good.

While I believe I will go to work tomorrow, my guess is that I will be gone no more than 5 hours and then I will return to rest until I am ready to move again.  And for this weekend, I have already said no to working so that I can continue my healing journey.

This week’s virus has allowed me the time I needed to take a deep breath, stop, and listen to my body.

For next time, it is my hope that I remember to breathe, stop, and listen to my body before my body tells me it has no choice.

 

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RIP Zach Lederer. RIP Superman Sam.  RIP Liv Wise.   RIP So Many More. . . . 

In the last few months, amazing young people with so much life in front of them lost their struggle for life.  Brain cancer took their last breath away.  (Correction: Sammy died of refractory acute myeloid leukemia another form of cancer.)

Remembering. . . .

While I did not know any of these beautiful souls; my heart crumbles with each and every loss.  My entire being feels the loss and then remembers how much our family once suffered as we fought for Aryeh’s life.  Yes he not only thrived, but survived in spite of losing most of his teenage years to illness, a very large (6.5 cm all around) arachnoid cyst on the right temporal lobe of his brain.  Many sleepless nights, everlasting tears, intense pain, and two brain surgeries later, I still never go a day without remembering what happened.

Aryeh at the Kotel Summer 2012 - Seeing this photo touched me deeply.  At one time, the possibility of Aryeh thriving would have been a dream. . .. .

Aryeh at the Kotel Summer 2012 – Seeing this photo touched me deeply. At one time, the possibility of Aryeh thriving would have been a dream. . .. .

As a mother, I recall the sleepless nights, the fear of loss, the stress on our family, the financial realities, and the agony my son faced every moment of his life for over 3.5 years.  I never questioned why him, but I did always pray for his pain to cease in any way it could.  I hated seeing Aryeh in pain; it nearly destroyed me.  There was nothing I could do; sometimes it felt like no one could help. Eventually one special doctor made all the difference.Any time a loved one has to watch a child suffer is profoundly horrible.

There are no words to express the darkness that looms with each breath.  Even as you hope all will be ok, fear of hoping can be paralyzing too.  Each of us that have faced serious illnesses knows that sometimes there are no tomorrows.  Since March 2007, I see the world through different eyes.  I fear loss, but almost never forget to live fully.  While there is no such thing as a given, nearly every moment in life is precious.

Each of the losses above have flooded me with memories of Aryeh’s journey.  The journey to health from serious illness sucks and yet we still get to choose (mostly) how we navigate our journeys. All I can say is wow as the tears run down my face. My hope is that brain cancer and all serious illnesses find a cure. No one should have to endure this pain and/or this loss.

Remembering. . .

My heart goes out to Lederer, Sommer, and Wise families and to every family that has ever had to navigate a health journey.   Losing  is the worst.  May the souls of their loved ones be at peace; may their memories be a blessing for good.

For more information on the amazing young people mentioned above:

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We live in a broken world.  Inside us there beats a heart that has been broken more times than we’d care to remember, but there will always be someone to help us pick up the shattered pieces and begin the process of repair.  Sometimes with glue, sometimes with love, sometimes with miracles.  Always with God.

~Naomi Levy Hope will Find You  (p.152)

Washington DC skies following a storm.

My son is sick.  And it could be very simple or not.  We don’t know, but we are navigating the both modern medicine and alternative medicine. That’s what we do.  For over three months, he has been plagued by pain; the last 6 weeks have been out of control.  In my heart, I believe that all will be good; the journey might be difficult, but we are handling the current reality.

Last night, as I sat in a circle of new and loving friends, I felt caged; I had to get away.  Everyone was asking questions, sharing the curiosity, and offering insight.  All I wanted to do was dodge the conversation not because I didn’t want to share per se, but because sharing makes me re-live the pain and sadness again and again.

Throughout our lives all of us will experience periods of mental and physical challenges and periods of mental and physical health.  This is reality.  Personally, I have been blessed with both and my guess is that you have too.

In my reality, I have faced critical illness multiple times for my children.  Life threatening and ultimate survival has been our experience.  For the most part these experiences have taken years to recover both the physical and emotional trauma.

Being a friend to someone who is experiencing ill health is not easy.  And each family being challenged or plagued with chronic illness deals differently.  The one thing that I know is that words have power, so saying less and asking less is often what I need from others.  I want to know you care, but I don’t want to share each day, each ache, or my fears.  Once I share, the realities loom in front and the emotions flow; what I need is to navigate the realities and to stay focused on what I hope will be the end result – HEALING.

With that in mind, I wanted to give some guidelines that help many of us that have experienced serious illness. Regardless of the outcome, these guidelines offer insight into what I need:

  1. Trust that I will share the details if I want to share the details; don’t ask.  When my older son was ill, everyone wanted to know his prognosis.  There was a chance he might die and I didn’t want to say those words.  If there is something you need to know the grapevine will ultimately work by design.
  2. Each experience is unique, don’t share your experiences with a similar illness.  If I need your insight, I will ask.  Unsolicited experiences lead to fear mongering.
  3. Trust that I am getting medical help and if I need help finding a different practitioner, I will ask for guidance.
  4. Smiles and hugs make a huge difference in how we walk through the day.
  5. You can ask how we are, but don’t dig for answers.  I will share when it feels right.  Remember I don’t want to feed the energy of illness.
  6. Offer food or hanging out opportunities.  Having someone who doesn’t feel good in the house takes a lot of energy.
  7. Don’t judge how individuals are handling their journey.
  8. Don’t hold abruptness or grumpiness against the ill people or their care takers.
  9. Pray and vision for good health.  And when health looks depleted, pray for  those that are being challenged to find balance or peace within the storm.

Caring is a form of art; what works for you isn’t what will work for me.  Saying less will allow those in need of healing to maneuver their journey.  While the journey can be long, it is what it is.

Hang on for the ride.

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