JAUNT: "Where can we take you?"

I wanted to share this article below about the transportation I was able to obtain upon moving home. My parents lived outside of town where the public transportation system was not available. So shortly after coming back to Virginia after living in California for about seven years, I applied to see if I would qualify for having this private bus system, that I was told about, come pick me up to give me rides to get where I needed to go.  I got approved, and it has been an amazing experience.  

Even though I have gotten through many of these challenges and improved my health immensely, I am still able to use their services.  When I obtain my acupuncture license in the next year, which I have been studying for a while now, I will then take the step to decide where I want to be.  Until then, I have decided to continue with Jaunt.  I have met some amazing drivers and some fun and interesting riders.  I have many stories, that I can share.  Have fun reading the article below.

Meet the Riders: Gabrielle Olko

November 29, 2022Cassy KellyCharlottesville, Community, News, Riders
https://ridejaunt.org/news/meet-the-riders-gabrielle-olko/

Gabrielle Olko used to live in Los Angeles, where she could walk or bike everywhere. When she moved back to the Charlottesville area, she felt stuck.

The 39-year-old doesn’t have a driver’s license because of seizures, so she used Ubers to get from her home near the airport north of Charlottesville. “I was spending more money than needed or not being able to get out except for a doctor’s appointment,” she recalls. But about five years ago, a friend told her about Jaunt.

“Jaunt is amazing,” Gabrielle says. “I’ve become friends with the drivers, and I’m truly taken care of. I’ve even gotten to know some of the people that I ride with a little bit, and we make jokes or ask how someone’s cat is or their sister.” Jaunt helps Gabrielle get to doctor and dentist appointments, the gym, the library and many other places.

The two drivers she sees the most are Sandy and Cavonda, and she’s developed a good relationship with them. “What brightens my day is to see the care the drivers give to people that are struggling a lot more than I am,” she says. That could be everything from helping someone with a wheelchair or listening to riders’ stories. “The drivers make the experience fun,” she says.

Gabrielle is studying for her acupuncture license exams and finds riding Jaunt inspiring. “I like to look at it as almost my extra credit course,” she says. “It’s been a beautiful, humbling experience to not just be learning in the clinic, but to be on a bus with all these people going through different things and just finding a full-on respect and beauty.”

Jaunt Website: https://ridejaunt.org/

YouTube Updates

Welcome. This is my 30th post of this journey. The beginning of this blog was November 26th, 2013 My Journey: The Beginning.  One month prior to my first post was when the opening of my brain began. I am grateful to have all of you here with me.  I am working on an in depth written post that will be coming shortly in the next couple weeks, but for now I decided to share my youtube videos that show a little bit more of where I have been over the past year and why I have been a bit MIA from the public world.

May 16, 2018

May 27, 2018

May 28, 2018

June 19, 2018

July 11, 2018

August 9, 2018

September 21, 2018

I Am Rooted! I Surrender! I Have Faith! - Psychological Symptoms from Protracted AED/Benzo Withdrawal in Detail

Here I am in this body a year later, and the journey continues. April 2017 feels like it was yesterday. I haven't felt the inclination in posting at all, as I feel stuck in a cloud of fear surrounded by a challenge of curiosity. I am pushing myself to surrender to the overcast sky. to stay rooted, learning that the rain will bring seeds that will root down and grow upward.

Anyone who is new and wants to know where this part of my journey is even coming from, feel free to Start At The Beginning and for those of you that are here again, welcome back! And for those of you that are new but only want to read this post or even just this paragraph and that is it, fine by me! Whatever your heart desires.  I love you all!

I am writing this post partly for my own journaling but also to share. For myself, reading other blogs, as well as joining online groups relating to drug/medication withdrawal experiences, has been one of the biggest comforting outlets for this journey.  Knowing that I am not alone and what I am experiencing is OK and part of this healing and detoxing journey.  It can feel resistant as though I am mentally in the thick of it, and when having someone nod and smile and say, "if you just breathe and meditate a little bit you will be at ease!" and yes that DOES help, but sometimes it also helps to stand outside and shout and scream as well as finding others to relate to that have been through a similar experience. So for those out there that have publicly shared their story, thank you! It has benefitted me on this healing journey.

I wrote about this in my previous post, but the reason I decided to wean off of Vimpat was due to the side effects, a year in, began to manifest. I recommend reading my my prior post. Below shows a bit of what was written.

"After running the MRI for the third time since the seizures frequented last June, showing no change of the tumor at all, undergoing an EEG scan, as well as observing all my symptoms over the past couple months, we have confirmed that most of what is going on is coming from the toxicity that has build up in my system over the past couple years from the anti-seizure medication I have been taking.  I have been experiencing noted side effects that have come in waves over the past couple years since I started this medication; the most intense one being that of disorientation and not quite feeling in my body.  Its hard to describe the feeling.  It feels like being a bit "stoned" and in a mild dream state.  I feel within a dejavu state of mind, but also removed mentally from what seems normal and safe, with the inability to speak and operate. I perceive being in a state of terror with a churning sensation in my abdomen rushing up to my chest. This experience executes quickly, although it does not feel that way. 

Other side effects from this medication that I have been confronting over the past years include: shortness of breath, itchy skin, mood swings, dizziness, short term memory loss, sinus infections, nausea, dry mouth, constipation, anxiety, panic attacks, over-emotion and many others.  I would say since I started taking it,  I have experienced about 75% or more of the notated symptoms, as well as others. Vimpat is a newer medication which has only been out since 2009, not having as much research and information os other benzodiazepines."

Since the segment above it has now been a little over four months since I have been fully off of Vimpat as well as Ativan.  I spent the past year weaning off of the Vimpat.  The Ativan, since I had been on and off of it sporadically, I decided to "Cold Turkey" and abruptly stopped taking without weaning off.  Overall the sudden wean off was not a good idea but here I am.  One thing I have noticed from these groups is how different each of our bodies react, yet how similar. I know others, who are on a benzodiazepine or psychoactive drug withdrawal journey, can relate in the sense that they would take the physical symptoms any day over the mental symptoms.  The mind games that these psychoactive medications like to entail upon our brains, is terrifying! Since being fully off of the medications, I have still been experiencing symptoms,  both physical and emotional, which have been changing, which is good but also scary.  Sometimes I feel like as soon as I start learning how to deal with and control a symptom it transforms and changes.  The symptoms haven't seemed to be getting any worse, just different.  In fact according to my medical daily journal which I have been keeping, ultimately its been BETTER! Although, when in the midst of it mentally, it does NOT feel any better! I am grateful that I have been keeping a daily medical journal, as its a good reminder showing me PROOF that I am healing, because sometimes mentally I do not feel that way at all and my biggest fear is that I am going to remain "stuck" in my crazy hallucination aura like brain symptoms and never get out.

The emotional symptoms caused by this drug withdrawal, to me, feel far worse than any of the physical symptoms, as well as far worse than anything I have experienced naturally.  It seems to me that the emotional symptoms make the physical symptoms more challenging also, as my mind seems to be playing a fearful game with my body, and altering my perception of reality.   I was hoping that once off the drugs I would start feeling better; not yet the case! I do have faith though and feel that the universe is teaching me the medication meditation of PATIENCE. At this moment in time no matter what vitamin, what diet, what meditation, or healing session I am undergoing, as much as they may and do help; I am discovering that ultimately it is TIME that is the true healer.  Also, as much as these online groups and blogs have been helpful they have also helped me discover that everyones time, symptoms, side effects, and experiences are a bit different.  Listed below are the main mental withdrawal experiences that I have been feeling over the past year and especially over the past four months.  All of them have not been 24/7 but seem to consistently come and go and are up and down and have also changed slightly or altered along the way.


DEREALIZATION, DEPERSONALIZATION:

I feel as though Ive lost my full sense of personal identity.  Everything at times seems unreal and dream-like.  I feel a loss of sense of direction, place, time, and surroundings.  Sometimes when I am talking I feel like it is someone other than myself talking. Things seem distant and vague. This sense of derealization is scary at times as I feel like I am not in this body and don't know who I am.  I feel like I am in a bad dream and need to be shaken awake back into reality.


NERVOUS, ANXIETY, PANIC, FEAR:

These past three months of being off the medication have been extremely terrifying.  It hasn't helped that last time I checked there was a tumor in the brain, and although it hasn't changed grown or moved, last time I checked, that panic in my brain like to terrify me and tell me other stories.  This feeling comes sometimes and it feels like a sudden, overpowering, chaotic and confused mental state of terror where I feel doubt-ridden and sometimes feel in a state of shortness of breath to the point of shakiness and hyperventilation with extreme nervous nausea and anxiety.  I would say this is one of symptoms that seems to be present the most.   I seem feel consistently in the flight or flight response with fatigue.  In my medical journal I have labeled it FFF (fight or flight fatigue).  When in this state I will feel like my heart is racing and palpitations, but then I will frantically take my pulse and it won't nearly be as high as I thought it would be.  From this panicky state seems to come physical symptoms like shakiness and slight spasms.  It feels like involuntary quivering, trembling, and distress. When I feel in this state I feel like a little girl going over the "what ifs" in my head. What if I stay this way forever? What if I am dying?  What if the tumor is growing?  What if my life is over?  I have been seeing a few days here and there now where I don't feel this way! These days are beautiful windows of light that have been giving me the faith to hold on.


DEPRESSION, SADNESS, CRYING FITS:

This has been like a hopeless feeling of failure and regret.  Sometimes these sensations feel so intense that parts of my mind tell me I would be better off dead.  This side effect seems to be one of the deepest and darkest and my mind seems to often go into a space of regret.  Regretting ever cutting my brain open, regretting ever taking any medications.  My mind when in this state seems to hold onto those thoughts of life would be better had I never made those decisions.  Yet here I am and I made them and now time to let go and stop holding attachment to them, although when in this space of depression that seems hard.  There have been some days that it actually feels painful to smile.  I have been trying to find TV shows, movies, books, and distractions, but even those seem to hurt my eyes to try to do as well as seem hard to even try to do.   Sometimes having fun, being silly, and acting "normal" seems impossible, and I feel like an outsider alien looking in at other people and how much better their lives seem.  I know I have already been a beautifully sensitive person, but since these withdrawal symptoms that seems to have heightened to a state that is not so beautiful, like crying and bursting into tears for no reason.  I am learning to just have that be OK and to cry and let it out! But man it has been tough!


EMOTIONAL SENSATIVITY:

Above I spoke about how I am already a sensitive being but that emotional sensitivity seems to be over heightened throughout these withdrawal symptoms.  The slightest provocation seems to upset me.  At times I feel myself suddenly breaking out into laughter or drying or doing both without being able to control this outburst of emotion.  These episodes feel unstable and seem to be caused by experiences and events that I normally wouldn't feel emotional about.  Things I would normally shrug off seem to fill me with an outburst of tears, or with rage, or cowering in a state of terror.


HALLUCINATION, AURAS:

Thank goodness the past couple weeks I have not been experiencing these, but towards the end of my wean off and the first couple months of being off I would have auditory hallucinations.  This experience seemed to be a feeling that started in the lower abdomen where there is a fluttering nervous sensation that seems to rush up to the belly and then twirl up to the chest, to the throat, and up to the brain. This sensation is followed by creepy voices that at the time I know exactly what they are saying and it feels like a dejavu sensation, although afterwards I couldn't tell anything that they said.  While this is happening there is often a sour metal like dripping sensation in my throat.  It feels like I have just taken a hit of acid or some drug and going into a drug like panic sensation.  There also is often a frightening come down sensation with an upset stomach, a head brain throbbing feeling, and a serotonin drop feeling.  When I have felt this sensation coming on I always want to turn off any sounds whether it be music or voices or anything, as it seems to enhance the sensation. They seemed to last anywhere from 20 seconds to a few minutes.  Thank goodness these seem to have subsided in the past couple weeks, but what I have been feeling now is more aura-like, almost like a being high feeling that is like a hallucination but much much lighter, however it seems to last longer; anywhere from 10 minutes to a couple hours.  Its like a hallucination seizure like experience is trying to come but won't.  There are parts of me that sometimes wish it would just come already so I could reset, instead of feeling like its trying all day to come.  However deep down I know this is a good thing and is part of this detoxing experience, but its still frustrating, terrifying, and hard.


FORGETFULNESS, MEMORY DISTURBANCE:

This symptom is one that started even while on the medication, as well as some of the above symptoms also, which is part of why I decided to wean off.  I often feel unable to remember things that I would normally ordinarily remember.  Ive noticed its mostly short term memory that has been a struggle. It seems to be doing a bit better since being off, but is still a frustration.  Like meeting someone new and having a deep meaningful conversation with them, and then perhaps running into them a week later, and they may look vaguely familiar but having no recollection of what we talked about or who they are.  Obviously this is something that would happen on occasion even before the medication, but since the medication has been overly enhanced and to an alarming and frustrating point.


EXCITABILITY, OVER-ENHANCED SENSATION TO STIMULI:

This sensation comes about from all my senses being overly enhanced.  This is one thing that has gotten remarkably better in the past couple weeks also!  But bright lights are aggravating, being startled very easily, weird smells, weird tastes, and just feeling over-stimulated!

Vision: Like I mentioned, bright lights are alarming and sometimes seem to trigger hallucination aura experiences.  Also the eye always seem to feel dry and burning.  A more recent symptom has been feeling cross-eyed and seeing floaters and spots.

Hearing: This is a big one for me.  I seem to wear ear-plugs 90% of the time.  Everything seems much louder than normal and can also be startling.   Another related symptom here that I have been experiencing is tinnitus.  Lots of ringing in my ears, all the time, especially at night.

Taste: The taste that comes about often is a metallic sour taste even when having put nothing to taste in my mouth.  Also the taste in general when I am am eating or tasting something seems to be distorted, either under-enhanced or over-enhanced.  Sometimes I will take a bite of something and immediately the taste will make me feel nauseous or dejavu like.  Its hard to fully explain, but the point is that throughout the wean-off and during these withdrawals, my sensation of taste has been distorted.

Smell:  This sense seems to be over heightened immensely, and is also one of the senses that seems to stimulate aura like sensations.  Smells seem creepy and familiar at times.  Sometimes I smell stuff that is not even there to smell.   Like it will smell like someone is cooking pizza and there is nothing being cooked at all in the house, so I wonder where the smell is even coming, and then that brings up fear and other sensations.  Also a recent example that I have experienced, was the past month loving the smell of this particular incense and then suddenly last week having it be a smell that seemed to trigger aura like sensation and hating the smell to the point that now if I smell it I feel nauseated.

Touch:  Again, similar to above, it is over-enhanced. Lately I have been enjoying touch though, as long as I know its coming and its not someone coming up fast behind me and me getting easily startled.  But having someone hold me or hug me, or getting a massage has felt good.


OTHER SYMPTOMS:

Below are a list of other physical and mental symptoms that have come from these medications that I have experienced prior to, during wean-off, and/or during withdrawals:

• Headaches
• Sinus Issues!
• Itchy, burning, numb, staticky skin (especially scalp, but all over body)
• Weight loss
• Indigestion
• Constipation/Diarrhea
• Burning frequent urination
• Sore/Achy body
• Insomnia
• Menstrual irregularities 
• Eyes: dry, burning, pressure, itchy, seeing spots, vision blurry
• Ears: dry, burning, pressure, itchy, sensitive
• Shortness of breath (feeling winded)

For those of you that have been following and reading my entire blog, I would love to share with you that a couple weeks ago I was having a very intense day with lots of seizure activity and the ego brain kept telling me it was all that tumor thing growing and had nothing to do with medication withdrawals, so I ran to the ER.  They did an MRI and sure enough, NO GROWTH!  The tumor had not changed at all.  This news has definitely been a relief off my chest and confirms what I already knew which was that what I have been experiencing is due to medication withdrawals, and has nothing to do with tumor.  It has not made the withdrawal symptoms go away but definitely has helped quiet my mind and also re-assured me the power of intuition and my gut and that what my heart has been telling me is correct and how crazy the mind likes to convince us otherwise.

One beautiful thing that has been helping me through this is God.  Faith!  I have started going to mass  almost everyday at 12:15pm.  I consider it my benzo withdrawal group. Hehe. This has been a true test of my faith, and at this point I feel that it is just me and God.  Like I said earlier I can take as many vitamins, tea, healing sessions, etc... but ultimately it is time, patience, and FAITH that I have discovered are the true healers; faith being number one!  My biggest test the past few months has been being able to surrender to that and how to find the balance between surrender and holding up my sword and shield.  My fear for surrendering has been that if I surrender that means I will die, and that is SCARY.  I am learning more and more that yes surrender may mean death, but not necessarily death of my human body, but more so death of the stories and thoughts and attachments I am holding on to.  I don't feel quite there yet but in this moment I surrender!

A week ago I woke up in the middle of the night to having an elongated seizure like aura at 1am which felt like an elongated panic aura that seemed to go in and out of hallucinations.  I was fully conscious and aware and it felt like a dejavu rollercoaster fear sensation with body spasms and jolting.  I was fully conscious and slightly able to talk but not fully.  It seemed to go on and on and on and fear seemed to grow and grow and grow to the point where I had no choice but to surrender.  I lay there in bed shaking and reciting over and over in my mind, "I surrender I surrender I have faith I have faith!"

At this time I have had one or two days with "windows" which I know doesn't seem like much, but even an hour or two during a day of darkness that has a light of feeling "normal" helps uplift my faith.  For these windows I am grateful.  Like I mentioned earlier no matter what herbs, diets, vitamins or therapy I do right now ultimately it is TIME that is the true healer.  We have however, found an amazing doctor that seems to have a lot of experience with psycho-active drug withdrawals, as well as hormonal, pancreas, and thyroid related issues.  He takes a very whole holistic outlook at everything and talks about the power of less being more and my body needing time, and rest.  He talks about the sensitivity of the nervous system, and how much time and rest it needs in order to fully recover.  I hope to continue working with this doctor so long as the universe provides the needed finances in order to do so.

Another blog post will be coming, whenever the time is right.  And like I mentioned, I didn't even feel "ready" to post another post.  However, felt inspired to do so by others who have shared their healing story with me.  The power of sharing! Here I am.  I am sharing. I stand here rooted in my body! Alive! Amen. And, for that I am grateful.

Medication Frustration Shifted To Meditation Transformation

Hello there, its been a while since my last post so I decided to write and fill you all in with where I have been the past couple months.  Like I mentioned in an early post, I have been experiencing seizures, and auras, and a feeling of disorientation, and a lot of uncontrolled fear.  I remember calling my dad one day in tears and shaking saying to him, "I feel like I just took a drug and now I am having a bad trip and don't know how to come down! My brain doesn't feel right!"  And his response back to me was, "My daughter, you are taking a drug. A drug that effects the way the brain works and can build up toxicity in the body and create these side-effects you are experiencing."

The medication I am currently taking, and currently weening off of is called Vimpat (Lacosamide).  This is an anti-epileptic drug that is a federally controlled substance (Schedule 5) because it can be abused or the body can become dependent on it.  The number one most important thing about this drug, which is written on the Vimpat website is, "Do not stop taking Vimpat without talking to your healthcare provider. Stopping Vimpat suddenly can cause serious problems."

After running the MRI for the third time since the seizures frequented last June, showing no change of the tumor at all, undergoing an EEG scan, as well as observing all my symptoms over the past couple months, we have confirmed that most of what is going on is coming from the toxicity that has build up in my system over the past couple years from the anti-seizure medication I have been taking.  I have been experiencing noted side effects that have come in waves over the past couple years since I started this medication; the most intense one being that of disorientation and not quite feeling in my body.  Its hard to describe the feeling.  It feels like being a bit "stoned" and in a mild dream state.  I feel in a deja vu familiar state of mind, but also removed from what is in any way normal or safe.  I feel in a state of terror with a churning sensation in my abdomen which rushes up to my chest.


Other things I have been experiencing as a result of this medication over the years include: shortness of breath, itchy skin, mood swings, dizziness, short term memory loss, sinus infections, nausea, dry mouth, constipation, anxiety, panic attacks, over-emotion and many others.  I would say since I started taking it,  I have experienced about 75% or more of the notated symptoms, and possibly even some non notated symptoms, as Vimpat is still a newer medication which has only been out since 2009.

What I have been journeying through the past few months has been aura and seizure like activity which has been occurring every 1-3 days.  I have moved back to Virginia for a while to be able to get things on track and in order and to put my health number one in my life during this medication ween off, as well as to spend time with my family, re-root in the clean fresh mountain air, and study for my National Exams.  We are working with a specialist, James Harper, and his THE ROAD BACK ween off program, which I started on in January.  The program, related to the medication I have been using, is about 10-12 months.  The reason it takes this long is, the brain has built up addictive qualities and me weening off too quickly could cause even more seizures than I am already experiencing, including grand-mals as well as intensified other activity in the body.  As badly as I want to be off of it now, its something that I am learning needs time and patience.  This medication which is suppose to be an anti-seizure medication has over the years caused me to feel disoriented and in a different dimension.  Like I mentioned earlier, I have been experiencing many aura like experiences which I am conscious for.  They generally are only about 30 second - 1 minute experiences, but feel much longer. Its a feeling of being stuck in a nightmare and not knowing how to wake up, and then I wake up, and here I am still alive in this body.

Some of the seizures have just been auras and not so much seizures, but over the past few months every 3-4 days the auras have escalated into a short 30 second black out which is known as a "partial" seizure, which I showed a video of in my previous post.  I am still experiencing them on occasion, although they seem to have lessened a bit.  The Chinese herbs, diet, vitamins, CBD, and lifestyle I am living are helping these symptoms lesson, but I am also having to learn the beauty of faith and of patience and of just sitting with the fear instead of fighting it!

I keep thinking I have worked through the regret of getting the biopsy but the thoughts keep arising in my mind of wishing I had never had my head ripped open and that none of this would be happening had I not done that.  But here I am and I did it, and I am here in this moment right now, alive and having these experiences.  Thats all they are is experiences!  The brain likes to put so much meaning and story behind each experience.  I am sick of telling this story about this tumor thing and blah blah blah!! I am ready for a new story!  I am currently reading a book by Dr. Joe Dispenza called "You Are The Placebo: Making Your Mind Matter."  He speaks about his own personal amazing health journey and the possibility of healing without drugs or surgery.  I am right now changing my story and releasing my past story, and although Vimpat has felt like poison, and the biopsy has felt like destruction I am letting go of those stories right now! 


“Your thoughts and feelings come from your past memories. If you think and feel a certain way, you begin to create an attitude. An attitude is a cycle of short-term thoughts and feelings experienced over and over again. Attitudes are shortened states of being. If you string a series of attitudes together, you create a belief. Beliefs are more elongated states of being and tend to become subconscious. When you add beliefs together, you create a perception. Your perceptions have everything to do with the choices you make, the behaviors you exhibit, the relationships you chose, and the realities you create.” 

― Joe Dispenza, You Are the Placebo: Making Your Mind Matter

In this moment what I am experiencing is being born.  A homeless man approached me earlier this year asking me how old I was, when I told him I was 33 he looked at me and stepped back and smiled and said, "This is the year of your resurrection and rebirth! It may not be an easy year but it will be a beautiful one, have faith and hang in there!"  I will never forget those words.  Each time I wake up I appreciate what I have and do not take anything for granted.  I am allowing my body to release what is no longer needed, and to strengthen and heal what is needed.  When I look in the mirror I see a beautiful, healthy, and strong woman, filled with much strength and compassion, as well as faith and patience!  This is a beautiful life adventure I am on and there is so much beauty still waiting to be unfolded.  I have realized the power of drugs on the system and the power of interfering with the body and how much that can take a toll on the human body.  I have also realized how much the mind and the ego and the "stories" take a toll on the body as well. I have become aware of how strong the human body is in recovering from those aspects, so long as I don't keep doing them and am now giving the body the nutrients, the love, the patience and THE FAITH needed for its full recovery!

The fact that this experience has not done one thing that the first doctors claimed it would do, is proof of how ultimately we are our own doctors!!  And just because we are told one thing does NOT mean it is the truth or it is real.  Our OWN bodies and our OWN beliefs are what create us.  Like Joe Dispenza says:

“And can you teach your body emotionally . . . what it would feel like to believe in this way . . . to be empowered . . . to be moved by your own greatness . . . to have courage . . . to be invincible . . . to be in love with life . . . to feel unlimited” 
― Joe Dispenza, You Are the Placebo: Making Your Mind Matter

This being said, here I am. I am alive.  I am well.  This is an experience.  I have much beautiful work and play left to do in this body, so here I am.  I am healthy. I am whole.  I am love. I am.

The Garden of Weeden

There is a bigger blog post in the works that will be sharing more of this adventure iI have been on, but for now here is a poem also explaining it in a nutshell. This poem was written by me today in Deepa's garden which is full of weeds, and I sat there correlating the weeds to my own (fear, anger, seizures, worry, stories, obstacles, hardships) and this is what came out!

The Garden of Weeden:

The new moon sets

And starts to grow.

The trees dance wild

As the sharp Santa Ana winds blow.

The plants they speak

a sacred song.

Connecting to earth

Where they belong.

The shadows they move

And around they play.

As the sunlight guides them 

to show the way.

The seeds lay covered

Within the darkness of earth

Surrendering to the rain 

to awaken to give them birth

The plant is born and 

shoots up to the sky.

Up to heaven

It wants to fly.

As the flowers come

And begin to grow.

Along comes the weeds

Telling them to slow.

As the plant surrenders

To all the weeds.

It feels stuck AGAIN

Like a baby seed.

Since the weeds remain, 

with the plants.

The flowers rise up and

 ask the weeds to dance.

From this dance, 

the plants can see

That heaven is on earth,

And comes from the seed.

So thanks to the weeds

For changing the play.

To allow the plants to

Find the way.

Heaven is also here 

on this earth.

Keep those roots grounded and 

remember their worth!

Love, Gabrielle

Shaken To Awaken

Govinda Govinda Hari Hari...

"Father open the flood gates of heaven and let it rain!"

Before I get started I am taking this moment to PAUSE... to look out the window and to watch the rain...RAIN RAIN RAIN!!

Los Angeles and California have been in one of the biggest droughts of all time, and now for the past few weeks it keeps on raining, and raining, and raining.  My body, my spirit, my light, has been feeling down, cold, wet and dark just like the rain.  I feel scared, sad, and frustrated.  I feel bereft of joy.

I wish the massive clouds full of rain would stop! But here they are in full! And deep down the earth needs it, so perhaps deep down I need it. The rain is falling on the earth to force it to rest and to receive, and the earth is having no choice but to surrender and to take in the rain.

So here I am.  Even though it feels hard to breath, I breathe.  Air comes in and out of my mouth and lungs.  And although it feels scary to have my heart beating so quickly, it is beating. In this moment, I  reach towards my inner earth and feel the presence of the damp cold darkness, to have faith and to open to feeling its beauty but also its shadow.  It is hard to put my umbrella down and to feel the rain.  I liked my cheerful protective umbrella! It allowed me to enjoy the rain and be in it, but not be soaked in it.  Here I am, umbrella tossed away, laying on the earth soaked in my journey.

This past year, starting this summer has been one of my greatest challenges faced.  I have been experiencing seizures on and off throughout this entire journey.  But end of May, around the same time I was prepping for my graduate exam for acupuncture school, grand-mal full body shaking seizures seemed to succumb to my body.  They were coming on every 2-4 days and would start with an aura and then go into a full body shake, where I would tend to fall on the ground and bite my tongue, this would generally last in full 3-5 minutes, but then had about a 20 minute come down before I would feel normal again.

They seemed to slow down a bit into the end of summer and fall.  I started to study to take the grad exam again.  I passed the first portion of it in November, which I had to fight for, but rose above.  Throughout studying for the second have of exam which was this January, I began to start having very small seizures, called auras. I actually started calling them "nirvanas" to look at them in a different way.

I felt fear arise a bit more throughout these.  I have currently been feeling the mantra of surrender, but when the seizure takes of, I feel as though surrender get sucked away.  Or perhaps it is surrender that is forced upon me pushing me down and holding me on the ground. I have posted below a video of me having a seizure.  This is very vulnerable to share, but I wanted to do this to continue to surrender and to love every wave of my life and I know there are many out there going through similar as well as different life awakening challenging experiences and it feels good to come forward and share.

When a seizure begins, it feels like the sensation of taking a giant bong rip of weed, starting in my lower abdomen a rushing nervous sensation rushes up my belly and stabs into my chest, igniting rapid palpitations of fear and extending upwards a rush of blood to my head.  A sudden sense of familiar unprovoked fear and unexplained emotions flash unto me. 

 I then fall into a deja vu experience having a feeling of whats happening has already happened, a sensation of everything thats being said or witnessed I have already experienced multiple times.  

Sometimes I hear voices talking, that aren't the ones actually talking, as if I am in a lucid dream-like state and at any moment could awake. These sensations are then followed by extreme sleepiness, over-exhausted emotion, massive headaches, sometimes chills, as well as confusion. 

Ive been the the hospital twice in the past week.  The first time was on Monday, my friend Jarrett brought me.  I have been having seizures twice a day the past 3 days straight and then on Monday I had 4, the last one being with him and was a mini blackout, so we decided to head to ER to check out and see what was going on.  Five hours later the ER released me and told me to come back later in the week to meet with my neuro-oncologist.

Tuesday morning I met with my CBD doctor. I have decided to religiously get back on a plan with CBD and THCA oil to work towards stopping seizures as well as weening off of the vimpat medication, which I truly believe is part of what is causing a lot of my symptoms.

Wednesday morning I awoke, the entire right side of my body was numb and felt weird to move, my neck was in severe pain and the entire right side of my head felt a stabbing sensation, as well as my sinuses were stuffed.  My body felt like it wanted to have seizures and the brain seemed to be skipping beats, but a full seizure wouldn't come.  To the hospital we went.  My good friend Jim drove me there, waiting in the waiting room with me for two hours, finally I got in, Jim had to leave so there I was alone in my bed,  I emphasized to the ER staff it was time to do an MRI. So off to the MRI I went.

 I was terrified!! I wanted to know so badly what was going on, if the tumor would show growth of if the sinuses would show inflammation. I wanted answers! I was also scared to get them, and the whole time I felt like I was on a psychedelic bad trip that I couldn't come down from.  My friend Lisa showed up just in time, as I was laying in my bed waiting for the results of the MRI.  Lisa began to perform an energetic reiki session on my body as we waited.  It couldn't have been at a better time, my body began to calm down.  Shortly after the nurse ran over and shared with us that she had seen the MRI scan and the notes of the reading state that THERE HAS BEEN NO CHANGE IN THE TUMOR since the previous MRI. Nothing.  I burst into tears.  Scream like sobbing jolted out of my chest.  I didn't know what I was feeling, just a wave of emotion was swooping over me.

A half hour later the doctor came over and confirmed what the nurse had said, that there was no change at all on the MRI, and also no showing of any sinus infection either. He then released me and scheduled me to meet with the euro-oncologist as planned on Friday.  There definitely was a HUGE weight lifted of my chest, a certain fear that felt released and given space to rest.  I assumed that on Friday I would be told to take higher dosage of my anti-seizure med, and possibly recommended some sort of chemotherapy again.  My assumption was wrong.

The doctor seemed a bit unsure himself, and I found it beautiful that he admitted that to me,  he told me not to increase the dose of medication and in fact that we should do an EEG scan next week to monitor where these seizures are coming from and what is going on, and that there is always the possibility of the medication playing a slight role, as well as stress, anxiety and other such developments.

I intend to go in and do the EEG scan in the next couple weeks, but I also intend to get this trip to India up and running.  We are currently narrowing our options between two hospitals at the moment, to fully see which one will be the best fit.  Thank you to the help of my friends my fundraiser is bringing in more funding, I only need to raise a few thousand more and I should be on my way!  I am in the works of getting my visa rushed to me.  I have also restarted on the ketogenic diet plan to see what unfolds.  Right now I am exhausted, I am tired, and I am grateful.

This morning I woke up with the sun shining in my eyes and a smile on my face. The grass outside was greener than green. Tears of gratitude flooded into my heart.  I had a seizure yesterday and another one today.  I have truly felt the fear of death sitting on my heart the past few days.  This body I live in is so temporary, and the people and energy I surround myself with are of utmost importance.  This experience has been providing me with an even deeper awakening of what is of utmost importance in this life, which people in my life matter the most, which vibrations help guide me to unravel the human who I truly came here to be and how to appreciate every moment of this body and this lifetime. I am currently staying at my friend Marnie's house.  She is looking after me.

My body feels exhausted and tired, a similar feeling to how I felt when I came have after the surgery.  I am forcing myself to stay put, to rest and to be watched after.  At this moment is hard,  I am vulnerable, and it brings up a lot of emotion in me.  Today I am feeling better than yesterday, and for that I am grateful. Ah Ho.

The Health System Sanity Project

Two Steps Forward - One Step Back

August 31, 2016

Two steps forward - One Step Back!   I am learning more and more that for every peak, there's been a valley.  For every leap forward, there been a stumble backward --- sometimes just an inch, and other times, what seems like miles.  I am starting to realize that progress isn't always what I pictured of being a steady, constant ascent of perfection, but that true progress isn't always linear.  Just like a muscle needs to tear to grow stronger, sometimes we need to wade into our own darkness to find a brighter light.  Here I am in the darkness, and trying to read my blog right now makes me nauseous and angry especially the post I have been working on which I have pasted below.  I wrote this about a month ago, and I keep not wanting to post it, perhaps out of fear, or feeling like I haven't fully experienced the lesson I am suppose to be learning, or how to even write about it. So here I go, I am surrendering and sharing it regardless and continuing to be vulnerable.  In this moment I feel frustrated, I feel scared, I feel alone, I feel lost, I feel confused, I feel tired, and thats okay!!

August 9, 2016

33 years old!  About a month ago was my birthday.  WOW! What a beautiful life thus far.  Iv'e been wanting to write for a while, but the words have not had the ability to come forward.  The past few times I tried, my hand froze and would not move.  The movement that I was feeling instead were the tears streaming down my cheeks from my eyes.

This morning the phrase came to my mind "fight or flight," which I just looked up the definition of this term, which is:

"The instinctive psychological response of the nervous system to a threatening situation, preparing the body to fight or flee, associated with the adrenal secretion of epinephrine and characterized by an increased heart rate, increased blood flow to the brain and muscles, raised sugar levels, sweaty palms and soles, dilated pupils, and erect hairs.  This situation is readying the body to either resist forcibly or to run away."

I have realized now that throughout the past couple months this body I live in has experienced full on fight or flight, attempting to run-away as well to resist forcibly. Neither route has seemed to work at all, and here I am exhausted.  The aura that is felt right before a seizure comes on, interestingly, feels very similar to the definition above as well. As I was looking up the definition of "fight or flight" a song by artist Jose Gonzalez began to play.  The words began to give me goosebumps as I took them in.  I looked at the title of the song which by no coincidence is called "Stay Alive."  As the lyrics unfolded they defined for me perfectly what has unraveled for me in the past couple months.

Theres a rhythm in rush these days

Where the lights don't move and the colors don't fade

Leaves you empty with nothing but dreams

In a world gone shallow

In a world gone lean

Sometimes theres things a man cannot know

Gears won't turn and the leaves won't grow

Theres no place to run and no gasoline

Engine won't turn 

And the train won't leave

Engines won't turn and the train won't leave

I will stay with you tonight

Hold you close 'til the morning light

In the morning watch a new day rise

We'll do whatever just to stay alive

We'll do whatever just to stay alive

Well the way I feel is the way I write

It isn't like the thoughts of the man who lies

There is a truth and its on our side

Dawn is coming

Open your eyes

Look into the sun as the new days rise

And I will wait for you tonight

You're here forever and you're by my side

I've been waiting all my life

To feel your heart as its keeping time

We'll do whatever just to stay alive

Dawn is coming open your eyes...

Today, I look into the sun as a new days rise.  The months of April and May were the first months in the past few years since the biopsy that I did not experience any auras, headaches, or brain/head activity and my body felt the healthiest it had felt in a long time.  And then, the very end of May was the beginning of a series of grand-mal and petite-mal black out seizures, as well as some auras. 

The first one occurred when I was on my way home from a long day at school.  I went to put my key in the mailbox to get my mail and then who knows how long later I woke up laying comfortably in my bed, with my mail at my side.  Somehow during that time my body had blacked out but was still able to function and move.  Somehow my brain knew what to do, like a robot subconsciously but consciously I was not aware of what was going on. As I woke up in bed, instinctively I knew what had happened, and I lay there exhausted and a bit numb.  The only similar experience I can relate this to is like taking too many shots of whiskey and instantly blacking out and waking up the next day wondering what happened.

Another frightening one occurred about a week later.  I was on my bicycle, carrying a small package in my purse to the post office.  I had my head phones in my ears, listening to music and had almost made it to the post office, when I felt a strange sensation of an aura coming on, like a slight feeling of being removed from my body.  I ripped the headphones out of my ears took a big breath and had the thought to stop my bike and get off when BAM, I blacked out.  I emerged fully out of the blackout while riding my bike home, suddenly thinking to myself, "what am I doing? what is happening?" I dismounted my bike and noticed my bike was completely bent and tore up and then I suddenly started feeling pain in my left knee and looked down to find it tore up and blood running down my leg.  As I became more and more aware of my surroundings, I began to remember that I had gone to the post office and remembered a conversation with the woman that worked there. My tongue hurt and was swollen.  I realized I had bitten it.  I still am not fully aware of what happened that day but know that I had a seizure while riding my bike and possibly a grand-mal (shaking seizure) since my tongue had been bitten.

A week or so later another seizure occurred while in clinic at school.  This one was the most frustrating, as I was near my final leg of finishing my acupuncture program and had been studying immensely for the first section of my grad exam.  After this seizure occurred, the emotion that rose out of me, that seemed to push fear away, was ANGER! I felt as if balls of fire were flaming out of my skin.  The conversation that came to my mind was "Come on universe!! I am in my final stages of studying and preparing to be able to fully help and heal others in the world and you are bringing me these seizures during the worst possible time!  I have been doing my work to help and heal myself for a while now, how much more do you want me to do?? UNFAIR!  I have been patient and I have worked through a lot of shadows and now this? Could it have at least come after I took the exam, or after I finished my grad program?"

August 31, 2016

I believe that I have been waiting and waiting to write, hoping that after I did an MRI I would be able to unravel and shift and have beautiful words of wisdom, or that the seizures would go away. Then I did an MRI which revealed NO CHANGE, NO GROWTH and that the tumor was exactly the same as its been since the first MRI.  As beautiful as this information was I still felt lost, afraid, and confused, but my hands were ready to write.

So I wrote what is written above, but I have been waiting and waiting to finish it, because perhaps I was hoping I would not be experiencing seizures anymore and would have worked through all this shit.  But here I am still having seizures and still in the shit. HELLO SHIT! You smell bad, but you are here, and so am I, so how can we accept each other? The quote comes to mind right now: "I'll see it when I believe it", instead of "I'll believe it when I see it." No more fighting, no more flighting.  And no more waiting and waiting. And my good friend Mark England says, "With my words, I create."  So here it goes, my mantra is in this moment is:

I surrender. I accept. I feel. I love. I live. 

I feel frustration.  Hello frustration! I surrender to you. I accept you.  I feel you. But I am here and I am alive and I love.  A good shouting and yelling and screaming and punching and letting it out, and then reciting this mantra and loving all of it, even the shouting and yelling, is keeping a smile on my face.

I am currently researching treatment centers world wide, not just in the U.S. that have had a large success in healing brain tumors as well as seizures.  I will keep you all updated as that unfolds, as I will need help creating a wonderful experience. If anyone has any knowledge and research of such places please feel free to contact me and send my way.  I am reaching out as well and asking for your vibration, love, and prayers.  I have always been an independent, confident, do it myself gal, but I am learning more and more the beauty and power of asking for help and fully receiving.  So thank all of you.  I love you. 

Inside the Womb

Hello my friends, I am grateful to have you here today, taking the time to read what is written. For those of you who are new to reading my blog, feel free to check out My Journey: The Beginning or feel free to read what you see here.  Whatever you feel is perfect!  This thing called "cancer" makes me giggle as I continue to unfold on an awakening journey.  Many shadows full of light continue to arise and here I am...still alive and breathing!

I have tried to write this post multiple times since my last official post in September, and every time I write my fingers cramp up and my mind blockades not even knowing where and how to unfold.  My last post I wrote touched on vulnerability and not being afraid of sharing my authentic self with people in my life as well as with myself.

This past year has been a whirlwind, filled with many challenges, shadows, fears, emotions... but more importantly much growth, unfoldment, and so much joy!  This past year has felt like the year of digging in the dirt so that I can plant the seeds so that this coming year my garden can begin to grow.  In my last post I wrote, "I am realizing more and more the importance of allowing darkness into my life and accepting it, like a seed in the ground.  The seed in the ground needs to be comfortable in the dark and accept the water that is coming in and the dirt all around, in order to be able to slowly grow upwards into the sunlight."  I feel as though my seed is still in the ground.  Its like my body has been shoved back inside my mothers womb to be able to experience a re-birth, into a new world.

I am each day recognizing the beauty of the science experiment of my own human body.  Author, Dennis Merritt Jones, refers to the body as a biodegradable vehicle that the soul drives.  I couldn't agree more! This past fall I started undergoing some hormone therapy, because we were able to recognize that when I was feeling seizure activity seemed to be happening between when I was ovulating and when my period started.  I underwent an in depth assessment testing my hormones, which were all over the place.  Boy has it been an experiment!  The partial seizures  have lessened in the past few months.  I have adjusted somewhat to the sensation of having them, but it is still a bit scary.

I have never taken part in an ayahuasca ceremony but what I am experiencing is strikingly similar to the experiences of those who have, in the sense of feeling removed from my body, while in a lucid dream-like state, where I hear voices and seemed to be removed from reality looking in.

None of these have included the body shaking which is why it is medically called a "partial" seizure.

The most simple way to describe it would be that it is like having an aura, or being in a lucid dream state.  There are three stages of it, 1. the coming on,  2. the full on state,  and 3. the come down. I know what it is coming on because I hear distant voices speaking, the voices and sensation seem familiar, but each time  I experience this "aura" it is a bit different but still "familiar." Once I am in a full on state, I am present, but incapable of communicating verbally. This lasts for usually about a minute, but seems to be MUCH longer.  The concept of time feels muddled. Then following the experience there is a hangover, as I feel as though my soul is slowly coming back down into my body.  Occasionally following these I feel cold to the bone with chills and chatting teeth, as though I have walked through a blizzard.

I wanted to include the journal entry written below, from this past fall.  This entry, I have  printed and placed by my bedside, so that I can read it anytime I begin to feel fear encasing over me. This entry is one of the most detailed and intense, well written and legible descriptions detailing how it felt to be fighting against this body I am living in which seemed to be trying to have a seizure.  Every time I read this, I feel gratitude for the ability and the strength that the human body has to face itself, or for the "self" to face the human body.


November 29, 2015

This past week has been up there, one of the most physically straining and most intense episodes of my life.  Not sure at all what is going on in my head right now, but pain as well as fear seems to have amassed my brain and body and taken over. I don't even exactly know what I am afraid of.  Am I afraid of dying?  Am I dying? Am I dead? No.  Am I breathing? Yes. Somehow.  The sensation that keeps coming about, which I am feeling a little of right now, hopefully is either passing or perhaps I am just getting used to it and allowing it.  Either way I am still feeling it and I feel stoned, and removed from my body, like an onlooker looking in. I feel abdominal sensations of a piglet running in my belly, playing games, giving me symptoms of wanting to deficate but not being able to get up from my bed to be able to even try.  Being able to take a full breath into my body seems to have become a challenge... My head is POUNDING!!  There seems to be a drum battle with my head against my heart to see who can beat louder and stronger!  My brain is wanting to hide away and hear silence!  

My throat is dry and burning and raw.  My sinus cavities are pounding with cold dry and painful air shooting up my nose and into my brain, and I wish it was going fully into my lungs instead and opening up my heart, which feels like it has been constricted into a metal sharp, cold, and pounding prison ball.  My chest is tight like a hard knot and seems to be putting pressure on my left side where my heart is, as I can feel it pounding and shooting pain up into my shoulder.  My entire body feels tingling and numb.  One second seizure like activity keeps happening every few minutes.  When it does I feel removed even further from my body for an instant and my chest, shoulders, and body seem to twitch forwards and upwards abruptly as my eyes blink strongly and my jaw clenches inward and tightly as I abruptly push air that doesn't seem to exist out of my lungs.  

My body feels succumbed and motionless, drowning into painful numbness.  I want to scream and run far far away from it all, but my mouth seems to be closed and unable to move and my legs seem incapable refusing and forcing me to embrace the darkness and to surrender to the fearful pain... and not need to know the answer to where this experience is coming from or where it is taking me, but to just recognize that all it is is just an experience and that is all and to not put meaning into it. 


Re-reading my journal entry above as I write this blog post brings tears streaming down my face.  Being alive fascinates me! Fear intrigues me!  I have been treating a patient with acupuncture and herbs whose cancer has spread from his bile duct to his liver, stomach, and intestines within a short period of time.  He was scared, and felt afraid to die, as well as felt physically in immense pain.  Being given a death date by the doctors seems frustrating and fearful. The dictionary definition of fear is : an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or threat.  The "belief" is an interesting way of phrasing it. And what is a belief?  Definition says that it is "an acceptance that a statement is true or that something exists, trust and faith and confidence of something."  So in stating this I am finding beauty that believing that death is peaceful and magical and not a threat or painful is a powerful way to change a belief that seems to have been ingrained and is only a belief.

This patient has now passed along into the next realm that we call death. It was beautiful getting to know him for a short period of time and I did feel the emotion of sadness and tears rise up when I heard of his passing.  Like I mentioned in previous posts, I feel in a place at this moment in time where I do not feel afraid of dying.  What I fear most is others around me dying because of the feeling it feels to feel loss.  What is death?  The definition of death is: the action or fact of dying or being killed; the end of the life of a person or organism, the state of being dead, the permanent ending of vital processes in a cell or tissue.  Does anything permanently end?

This body feels like a speck of stardust in a massive universe, connected to all the other specks of stardust in the universe.  And I love living in it.  My last post talked about vulnerability and making myself alert and aware of vulnerability has heightened vulnerable opportunities in my life, and I feel that I am faced with these exciting challenges often these days.

About a month ago I was experiencing sinusitis and severer pressure on my brain and had some very intense auras for a week straight.  Herbs and acupuncture helped release that and I am now feeling AMAZING!  Right now has been the longest I have gone without experiencing an "aura" seizure, and for that I am grateful.  As far as the tumor and its existence... I don't know! Its been a while since I checked.  When I do I will keep you posted.  More importantly right now I am in the works of creating and putting together a documentary to follow my story as well as unfold and to help others who are facing their shadows, as well as be able to raise some funding to go down to Mexico and undergo some healing at an amazing institute where surgeons and energy healers stand side by side.  My goal is to be able to give more awareness to our country of how this integration of medicine can be beneficial.

This blog feels incomplete, and thats okay! I am learning to embrace incompleteness and love every moment of it.  I will leave you with this: Below is a video of how much fun can be had while sitting in the shower and hearing my voice echo!

My album has also been released which I refer to as "surgery of the soul"! This album tells its own story and has come about from this tumor experience.  For anyone interested check out:

gabriellesundhari.com