Migraines: A Radical New Look At An Evolutionary Advantage

Laying curled up in bed tonight, I suffered through yet another severe migraine. This time, I asked myself exactly what my body was trying to tell me, and, more importantly, why??? I think I found the answer…

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Imagine:

It is sometime during what is commonly called the Stone Age. Small groups of people, hunter-gatherers, spread out across the face of the Earth.

You are travelling with such a group, gathering ripe raspberries from a thicket. You begin to notice strange flashing lights around the edges of your vision. (The migraine warning aura).

This has happened to you many times before, and you know what it means; a weather front is coming, quite likely with strong storms. You know you have only a short time to get to safety – you do not want to be on an exposed hill. You need to find shelter from the coming storm, protection from pounding rain, howling winds, and crashing lightning.

The pain starts soon after, a deep throbbing behind your eyes. (Pain is the body’s messenger, it’s way of telling us to stop what we are doing.)

As your group hunts for a place to ride out the storm, your body continues to send you warning signals: light begins to seem too bright, and you instinctively respond by wanting to find a dark, sheltered, location. When the first lightning strikes you will recoil from the increased pain it causes.

Sounds, too, become suddenly louder to you. The crunch of a branch underfoot causes a sudden increase in your pulse – that pounding in your ears. (Adenaline is being released, triggering your flight-or-fight response.)

You become nauseated, and lack interest in eating. You may even throw-up. You wouldn’t want to have a full belly if you suddenly had to run for your life.

Once safely in shelter, you instinctually huddle in a ball. Your shoulders creep upward, providing protection for your neck. (Protect your vital organs is your top survival instinct.)

The fear & anxiety caused by any slightest bit of sound or light (photo- & phono-phobias) cause you to be hyper-vigilent. You hear the tiniest of sounds, and actually feel your body respond to them with twitches & readiness to flee before your mind can process the nature of the sound or light. Were it the click of a pedator’s claw you hear, or the flash of lightning, you would be ready to move or fight. Falling rain can be noisy – the ability to detect the slightest sound approaching you might save your life.

Even your sense of smell is heightened, important when rain, fog or wind could dampen the scent of something dangerous coming towards you, and useful in discerning whether a cave you investigate for shelter is the lair of a cave lion or bear.

Stoked with adrenaline, sleep is hard to come by. You remain ready for any eventuality all night.

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Our hypothetical story was likely repeated hundreds of thousands of times during early humans two million years of nomadic existence. People who had migraines would have had a higher incidence of survival, equipped with an early warning of weather changes & able to seek shelter, and with heightened senses to alert them of any approaching danger.

If so, it is enshrined deep in our psyche, buried in the instinctual mind. This would explain why millions of people get migraines, and all the weird sensory changes that accompany them – something that, so far, scientists have no answer for.

After reflecting on this, the possible evolutionary origins of migraines, one of the biggest banes of my life, I decided on a course of action.

My understanding is that the human body sends us pain signals as a way to get our attention, and tell us to stop what we’re doing. If we ignore those pain signals, the body screams with pain even louder. To reduce the pain, we first have to consciously ackowledge it.

Laying in bed in a dark room while everyone else tiptoes around us does not solve anything, as anyone who gets migraines knows. The simple click of my own dogs’ claws on the floor outside my closed door set off more cringes of sound-induced fear (yes, fear – migraineurs get photo-phobia & phono-phobia). And they really are cringes – I feel sound before I actually hear it, or, at least, before my mind identifies it.

So I started talking to myself, things like, “Yes, I know there’s a storm coming, but I am very safe from harm here,” and, “There is nothing to be afraid of,” and, simply, “I am very safe.”

I pulled my shoulders down from my ears, and, repeating to myself, “I am very safe,” removed myself from bed. I went out to sit on our porch, watching the lightning play on the horizon. I noticed my arms were folded tightly across my belly, and relaxed them, let them fall to my sides, and repeated, “I welcome the rain. There is nothing to be afraid of. I am very safe & protected here.”

The pain & anxiety the migraine was causing was greatly reduced almost immediately. It wasn’t gone, but it was certainly better, especially since I’d been laying in bed afraid to move a muscle lest I puke.

I also took a good sized dose of Klonopin (clonazapam), an anti-anxiety medication, while going, “Oh! So that’s why ambien often helps my migraines!” – take ambien & stay awake & you get very relaxed & happy, which is why teens use it as a party drug.

Everyone experiences migraines slightly differently, and there are the weather-related migraines (which 90% of mine are), the hormonal migraines (hmm, telling our primal selves we need to get to a safe spot where predators won’t be able to smell the blood?), and food related migraines (telling us in emphatic ways not to eat that again).

Whatever the trigger, you can bet I’m going to be practicing self-talk, and trying to decode the hidden messages in the pain and other symptoms. Since migraine meds almost always fail me, there’s certainly nothing to lose… except the migraine.

Notes to Myself on Migraine Hell

Remember! It will end.

Four days and four very long nights I have spent in the deepest, darkest, most silent, depths of migraine hell. Hormonal migraine hell – the “hormonal” part is important, because that’s always the worst, most impossible to live through, of the migraine hells.

Four days & nights of wearing a blindfold, to protect my sensitive eyes from the light seeping through closed lids, of wearing two pairs of sunglasses, of tripping over the sad-eyed dog camped out just outside my door.

Four days & nights of barely eating anything, of drinking tea, downing meds, all in a futile hope for some relief. Getting weaker by the day, as I lay for endless, painful, hours, wracked by nausea.

Giving up, giving in, would have been easy, it seems, as my blood pressure was tanking on me anyway, and my soul was walking some strange paths. But I promised I wouldn’t.

So my words of advice to myself, for the next time it happens:

Take the fioricet. Enjoy the journeys it send me on.
Sunbutter on bread & coconut milk.
Salt tablets.
Heating pads.
Blindfolds (my soft stretchy hair bands) help me stop moving my eyes, which is important.
Expect Kodi to be under foot. He misses me. He doesn’t like it when mommy won’t play.

And most of all, when the minutes seem like hours, and the hours seem like days, and the days seem like forever, remember:

It will end.

You will be able to watch the sunset again.

You will be able to catch up with family & friends on facebook again.

You will be able to talk to Rhiannon again, and she will be able to wash dishes again.

You will be able to listen to music again.

It WILL end.

And when it does, watch this gem:

Dismayed

Like most females in America, I became aware of the intense pressure to stay thin when I hit puberty. I wanted to be lithe & graceful & tall like the dancers involved in Drama with me were.

Instead, my breasts grew large, and I stayed short, at 5′ 5″. Still, I wanted to be rail thin, and I remember when stretch jeans first came out, and laying on my bed sucking my stomach in so I could zip them up. Skin tight was “in”.

I gained weight with my first child, whom I had at age 20. But I bounced back, for the most part. I was active, riding horses, tending sheep & goats, and gardening. I didn’t care quite so much and for a while was okay with being between 125 & 150#.

Then came ME/CFS, and with it hypothyroidism. I ballooned up to 200#, and then spent many years struggling to keep it between 150 & 170 pounds.

I remember being so excited to fit into size 14 jeans again, then size 12′s.

Two years ago, give or take, I started losing weight. For the most part, this seems to be from a serious lack of appetite, nausea from non-stop migraines, and eliminating soy, dairy & gluten from my diet.  I’m simply not taking in enough calories.

Last Fall I was both excited and a little dismayed to fit into a Junior’s size 7 skinny jeans.

But yesterday, I left the dressing room at Target shocked & shaken to the core. I had tried on some Junior’s jeans, and now, size 5′s fit. I didn’t care for them, though, so decided to try on some Misses jeans. At 48 years old, there are many who would say I had no business shopping in the Junior’s department, anyway.

The Misses’ size 6′s were too big.

Then I went back & got size 4′s, and just for kicks, size 2′s.
The size 4′s were also too big.

And the size 2′s?
A size I never, ever, would have thought I could fit into again?
They were so loose I could take them off without unbuttoning them. I tried another “fit” in size 2, but they were the same. Too big.

I walked out of the dressing room and met Rhiannon, who looked at me with alarm, and asked what was wrong. I had a hard time even telling her.

24 hours later, I am still reeling from the shock. I spent roughly 35 years of my life wanting to be just one size smaller than whatever I was, and struggling to stay out of the plus size department whenever possible.

Now, I weigh a shocking 111#. And it has not been healthy weight loss. Muscles have faded away along with the fat. A few pockets of fat remain, here and there, and stretched out skin is struggling to tighten up.

Taking a shower, and seeing my naked body in the mirror, has become a traumatic experience.

I was never one to go to a gym, or work out. I didn’t need to, when I was healthy – I was too busy struggling to take care of animals that outweighed me, hefting 50# bags of horse feed, cutting & chopping firewood, riding horses & hiking.

But now, just looking in the mirror is overwhelmingly painful. The outline of bones show starkly in my shoulders and upper arms. Collarbones protrude & ribs are clearly visible on my chest.

And I keep losing, despite doing everything I can to stop it. I eat avocados and nuts and eggs, and drink coconut milk (high in medium chain fatty acids) and use coconut oil in lots of things.

I never, ever, would have thought I would look this way, or have a problem like this. Never.

I am weak & frail in a way I could never have imagined.

For the first time, I’m afraid. Not for me, but for Rhiannon. She’s nowhere near ready to lose me. But a quiet voice in the back of my mind keeps saying I need to get ready, and get her ready. Re-write my will, and clean the disastrous mess that is my house, so it doesn’t fall to someone else to do it. Given I barely leave my bed, that’s not likely to happen.

There should be tears. There ought to be. But I just don’t cry anymore. I think I’d feel better if I did.

There is a part of me that’s in deep mourning, for the lost strength of body I took for granted so long.

Another part of me, deep inside, has gone very still & silent. I don’t want to talk. I just want to stare out over the mountains, and let this sink in.

I feel like Alice did when she fell down the rabbit hole. All because I looked in the mirror, and tried on size 2 jeans.

This is so surreal.

When Its Not All Puppies and Kittens

Earlier this week, a Facebook page I “Like” put up a pic that seemed to have been written by a fellow ME/CFS/FMS patient. I’d show it to you, but it appears to have been removed, likely because it was a little too honest. EDIT: thanks to Barbara, I have it!

The response to this was interesting. I don’t often read the comments on pics, because there are roughly 400 pics in my FB feed a day. But I read these, in part because this image & these words were so different from what this page, which belongs to a CFS/FMS support group, posts.

A few people commented that yes, that was it, exactly! And then came the criticism, along the lines of “I come here for inspiring & uplifting information, not something like this!”

And it was that criticism that made me kind of angry at the time, because we all feel this way, at least some of the time. You would have to be made of stone to not feel sad, depressed, angry, frustrated, and lonely at least some of the time.

But that’s just not how you’re supposed to react to an illness that a) robs you of your ability to work, b) to attend family gatherings, c) to have a social life, and d) to enjoy even simple things you used to take for granted, like going to the movies, or watching tv. And also, of course, an illness that leaves you with an overwhelming exhaustion, chronic pain, an underperforming GI system, a brain that has a hard time thinking, and do I really have to go on? ‘Cause it’s a long list & I’m sick & tired & in pain.

No, you are supposed to only look at pictures of kittens & fluffy bunnies & flowers & read inspirational quotes & sayings in your spare time, when you’re not researching into something, anything, that might make you feel better.

You’re supposed to keep your chin up, never lose hope, never give in, because you’re in a terrible fight, and allowing yourself to grieve for everything you’ve lost, well, that just won’t do. Not in our society.

Which makes it even harder to endure this pseudo-life.

A month ago, I put up a post, We Know The Enemy or ME/CFS/FMS Explained Again, that through the miracle of the internet & our social networks, was read by over 800 people, instead of the usual 50. I’ve been working on a very long post in response to that, but seems this is going up first or instead of.

Because, when I finally got over the shock that a blog post I had written to my brother was going “viral,” I thought to put my contact info to the right, and some of the things people wrote to me privately were so very heartbreaking. Things like being pretty much disbelieved by everyone in their lives, feeling like they were dying ever so slowly, and yet no one even believed they were really sick, including their doctors. They were so relieved to connect with someone else who was where they are, and who “got it.”

Yes, I get it. And I also sometimes get very frustrated, sad, anxious, depressed, and angry.

And I’m not afraid to say it, or talk about it.

I’m even going to go out on a limb here, and say something else we almost all feel at some point, maybe not in the early years of illness, but once you reach a certain point: it’s hard sometimes to keep on living. To even want to keep on living. Sometimes, I feel like nothing but a burden, or I’m just so very tired, it seems like a lot of effort just to keep breathing. Sometimes, it just seems pointless, and sometimes I get tired of saying, “well, I’ll try again tomorrow.”

All of which is perfectly normal for a person as sick as I am, and as sick as you may be.

What’s not normal, in my mind, is that in our culture we aren’t supposed to ever admit our own true feelings about the wreckage of our lives; we’re supposed to keep fighting to the very last breath, and goddess-forbid you have a negative thought – better keep to those positive affirmations!

And yet. The suicide rate amongst our community is tremendously high. Many of us will admit privately to having “the agreement” with a close friend or family member – that when we get to a certain point, we’re going to go out on our own terms, and we’ll let them know so we can say goodbye.

Maybe, if we actually were allowed to talk about our feelings – the sadness, the anger, the desperation – and admit to having them, it would help.

Maybe, being guilt-tripped for even having negative feelings is only adding to the strain.

Maybe, we should all recognize that deep mourning for our previous lives & health being lost is normal.

With many of us alone because family & friends just can’t or don’t want to understand, being open & honest with each other becomes even more important. So is linking up those who aren’t connected into the patient community.

Linked together, we are stronger. When one of us is frayed to the bone, hopefully another member of our community will be there for them.

There are just some things that only another person with ME/CFS/FMS/Lyme can understand.

Like being sick & tired of being sick & tired.

Just for Tonight, And Maybe Tomorrow

Note: This is not the post I’ve been meaning to finish, the deep & touching one. That will come when it will…

“Brown hair zig-zag around her face and a look of half-surprise
Like a fox caught in the headlights, there was animal in her eyes…”

“Oh she was a rare thing, fine as a bee’s wing
So fine a breath of wind might blow her away
She was a lost child, oh she was running wild
She said, ‘As long as there’s no price on love, I’ll stay.
And you wouldn’t want me any other way”

          - Beeswing by Richard Thompson

Just for tonight, and maybe tomorrow,
I quit.

Just for tonight, and maybe tomorrow,
I’m going to be the person I was born to be.
The wild child who ran barefoot through the Forest,
The sapling Ash,
The dryad in training.

Just for tonight, and maybe tomorrow,
The trash can wait,
And the worries, too,
As I slip out from under responsibilities
And stress
And sickness
That threaten to drown me.

Just for tonight, and maybe tomorrow,
I’m gonna hold a bright leaf green stone,
And be young & free again,
Running wild through the forest in my mind.
Listening to the wind & scenting the rain,
But I refuse to be swamped by the migraine.

Just for tonight, and maybe tomorrow,
I’m gonna take enough meds to cancel out the pain.
Grey-streaked hair washed & finally clean again,
I cut it with abandon.
Silver-brown hair zig-zags around my face,
Curls over the tops of shoulders.

Just for tonight, and maybe tomorrow,
I refuse to be M.E.,
I’m gonna be me again,
The person I was born to be.
I’m gonna hold a bright leaf green stone,
Running wild through the forest in my mind.

“Oh she was a rare thing, fine as a bee’s wing
And I miss her more than ever words could say
If I could just taste all of her wildness now
If I could hold her in my arms today 
Well I wouldn’t want her any other way.”

We Know the Enemy, or ME/CFS/FMS Explained Again.

My mother said to me the other day that my brother can’t seem to wrap his mind around the concept that I’m really sick and there’s really very little that can be done about it. He seems to still think that “if I only went to better doctors or the right hospital, they could figure out what was wrong, and could fix it and I’d get well”. He has said the same thing to me. I know he means well, but he doesn’t seem to understand some things.

We know what is wrong with me. I have (and have had for over two decades) a diagnosis that is shared with at least one million other people in the US, with an estimated additional 3 million who have it but have yet to find a doctor who can diagnose it. It is poorly understood, although there is more research being done, worldwide. We learn a little bit more, get a few more pieces to the puzzle, every year.

Going to see another doctor would not change anything. I’ve had more than a second opinion – there have been thirds & fourths & even fifth opinions. There have been specialists from every specialty there is to look at my case & weigh in, and everyone is in agreement.

I have been diagnosed with Chronic Fatigue Syndrome (CFS, or alternately, ME – Myalgic Encephalomyelitis, or ME/CFS), a complicated neuro-immune disease. I also have Fibromyalgia (FMS), and chronic Lyme Disease, diseases that commonly overlap with ME/CFS.

In July of this year, a group of internationally recognized experts came together to develop a new International Consensus Criteria (ICC) for ME/CFS, which was published in the Journal of Internal Medicine. I’m attaching it here in case you’d like to read it – this is the ICC.

First, a note from the ICC about the name issue:

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

Here’s a taste of what they have to say about it:

Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS)  and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

I more than meet the ICC for ME, which require the patient to have symptoms from several categories, and every possible other cause of my illness has been tested for repeatedly. This is what is wrong, and why I’m still sick & getting sicker all the time. ME/CFS is a progressive illness.

I have seen:

• Three Primary Care Providers (at least)
• Two Rheumatologists plus the Rheumatology Department at Ohio University Medical School
• An Internal Medicine Specialist
• An Infectious Disease Specialist
• An Endocrinologist
• Two Gastrointestinal Specialists
• Two Neurologists
• A Cardiologist
• An Ear, Nose & Throat Specialist
• And one literally world-renowned Pain Management Specialist

I have had every test, every lab (and as the Labcorp tech put it the other day, my doctor orders tests that don’t exist – they do, but only thru speciality labs), CT’s, MRI’s, EEG’s,  EKG’s, a sleep study, cardiac studies (at none other than NIH), and another cardiac study at Johns Hopkins.

I have over 1,000 pages of medical records & lab results, all of which point to my having as “classic” a case of ME/CFS, FMS, and chronic Lyme, as a person can have. As a result of those, I also have Irritable Bowel Syndrome, Migraines, Hypothyroidism, Neurally Mediated Hypotension, Myofascial Pain Syndrome, and Inflammatory Reactive Arthritis.

In other words, I am a “typical” late stage ME/CFS patient.

It is believed there may be a number of different triggers for ME/CFS, which set off a chain of events in the body, similar to a cascading system failure in a computer. Once started, it’s difficult to stop. Very few people recover completely, and if they do, it’s usually within the first few years.

This has also been called “Post Viral Syndrome.” It is fairly common in patients recovering from mono, which is caused by Epstein-Barr Virus (EBV) – they simply never get over it. Having ME/CFS is like having a slowly worsening case of mono that never ends, and it expands to affect multiple body systems. Most ME/CFS patients have very high levels of antibodies to infections such as EBV and members of the herpes family, and I am typical in that regard – my EBV, HHV-2, HHV-6, Human Parvovirus B-19, and others are off the charts.

My first diagnoses with “CFS/FMS” was almost 20 years ago. At the time, the illness was fairly mild, relapsing & remitting episodes of fatigue, severe headaches which lasted days & I initially attributed to recurrent sinus infections, and some sleep issues. I had good weeks & bad weeks, and during the good weeks, it didn’t really seem like much was wrong. I “pushed through” the bad weeks because I had to – something most patients do, but unfortunately for us, those who push through the longest & the hardest are the ones who wind up the sickest.

In late 1998, I seemed to get the flu, except it never left. The headaches were constant, and after three rounds of antibiotics without improvement, with incapacitating exhaustion, I and my doctors realized that something was wrong beyond sinus infections. That is when the formal diagnosis of “CFS/FMS” first shows up in my medical records.

As the years have passed, it has slowly gotten worse. We have tried (and are still trying) every medication possible, as well as alternative therapies. I follow the clinical trials that are ongoing, and my doctor is more than willing to give me my own trial of medications that might help. Sometimes they do, and sometimes they don’t.

I worked too long. I should have stopped in 2004, when my rheumatologist told me to. But I’d just bought this house, and had a thriving business, so with the “help” of stimulant medications, I pushed onward, pushed myself beyond what you would believe, to work a few more years. But we know now that it’s the patients who push the hardest who get hit the hardest, who go downhill the quickest.

Now, I am primarily housebound, if not bedbound. Going out at all is very hard.

I have incredible exhaustion which is beyond your wildest nightmares, and which gets worse after any exertion, whether physical or mental, and can be worse for days, weeks, months, etc. This has it’s own name, and is one of the defining symptoms of ME/CFS: Post-Exertional Malaise (PEM).

As is typical, I have severe headaches, which are accompanied by intense sensitivity to light & sound. There are some patients in whom this gets so bad that they must move to an isolated area, and spend their lives in silence & the dark, not even able to speak above a whisper.

I have pain, in so many places, a generalized ache all over my body, but also knots in the muscles and the fascia (the covering of the muscles), and also osteochondroitis (inflammation & pain in the spaces between my ribs & breastbone). The pain is not helped by tylenol or advil, it takes the strong stuff – opiates – to dent it at all. There is never a time without pain. It’s a matter of degrees.

I have constant gut issues, commonly called Irritable Bowel Syndrome, but it goes beyond that. I have Leaky Gut Syndrome, where particles from food I eat leaks into the bloodstream. Since it doesn’t belong there, my body develops antibodies & sensitivities to it. It has reduced the number of foods I can eat tremendously, and what I do eat often causes bloating & cramps.

There is more, but I don’t think I need to go into it any further. Hopefully, you are finally getting the idea that it’s not a matter of finding the right doctor who will magically get me well.

I will continue to watch the clinical trials that are ongoing, and continue to hope that there will be a breakthru. I’ll also continue to try the complementary therapies my rheumatologist thinks might help.

But seeing another doctor, getting another opinion, that’s really just not needed. Not at all. And besides, I can’t travel anymore. That’s out of reach. I’m glad we traveled and did cruises as long as I was able to.  I will forever cherish the memories of Hawaii, Alaska, the Caribbean, and the trip to the UK & Wales I did right before it got severe.

We know the enemy, we know it’s many names – CFS, ME, FMS, Lyme.

But what no one, anywhere, knows is how to cure it.

Maybe, one day, they will.

Acceptance: Clarity Comes In Darkness

Clarity, that feeling of peace inside, of comprehension, of acceptance of what is and what will be, often comes in our darkest hour, or in darkness itself. It hides from the light of day, and waits for the dark of night, before revealing itself to us. We grasp it gently, lest it be lost, and hope to hold onto it, inside, hold on to the peace of mind, of spirit, that comes with that singularity that is clarity.

There has been much darkness in my life of late, in a very literal fashion, as increasing sound and light sensitivity has driven me to hide myself away in my room. There, in the dim light, but with eyes closed against even that, I have been working the beads for a necklace. My bed smells of the gently sanded amber, a sweet smell, the smell of the ancient, forgotten and lost world of millions of years ago; the scent of trees now extinct, but who live on in the shining golden light reflected in amber.

Alone in the dark and quiet, alone with the amber, I have come face to face with myself, with my life, my body, my health, and some things that I did not understand, or been able to accept, have finally become clear.

Clarity. Peace of mind, of heart, of soul. Acceptance of the illness that has ravaged my life and my body for many, many years. For two decades.

I knew acceptance was the key to living well despite chronic illness; you read that everywhere, and wise people tell you that, but how to accept the loss of so very much, how to do that, has eluded me. I could not make the body-mind-spirit connection.

At first glance you might think acceptance means “giving up” and waiting to die.

That was my stumbling block – how did I accept without giving in, giving up? That sounds like a very bad thing to us, who are taught that illness is somehow related to mental weakness, and that we must fight fight fight to the very end, to the very last breath.

But I now understand that is not the case at all.

Acceptance is simply knowing, inside, where it really counts:

This place, where I am right now, today, with my health or lack thereof, is where I am today, and that’s okay.

This place may be the best there will be for the rest of this life, and that’s okay. Things might get worse, and that’s okay, too.

This place, this day, this moment in time, may be all there is for this life, so I had better relish it, pain or no pain – relish it all.

This life could end in the space of a heartbeat, for anyone, whether healthy or chronically ill, and whether I think I am ready for it to end or not, so I may as well get myself ready: make peace within & without, and everyday tell the important people in my life that I love them, because I might not get another chance.

Who I am is gonna be okay, no matter what happens.

Acceptance doesn’t mean giving up. It doesn’t mean you stop looking for ways to return to health.

It means you stop fighting, stop struggling, and get on with the business of living your life, even if you have limitations you didn’t expect or want.

Acceptance is saying “I’m okay,” and really meaning it.

Ten or so years ago I had my first massage session with one of the few people I’ve ever met who I would ever call truly wise. His name is Karl, and after working on my knotted & tense body for an hour or two, he left me a limp puddle. When I could bring myself to move again (I could have floated in that amazing place of relaxation forever), I got dressed, and he met me at the door on my way out.

Karl gently told me two things I never forgot, as I left that day.

The first was that he gets feelings & impressions when he works on someone, and he thought the first thing I should do was decide if I wanted to be here or not – that my soul was only loosely attached to my body because despite being around 40 years old, I’d never quite decided. I was absolutely shocked & astounded, because this was absolutely true, and yet was something I’d never dared tell anyone, and never even really admitted to myself.

The second thing he told me was that he had many clients with chronic illness, but the ones who did the best were the ones that accepted that they were ill and may not get physically better. Those who could come to the point of acceptance sometimes had incredible improvements in their health, though some did not. Either way, they were better off, and acceptance was the key.

It has taken me ten years, nearly, and as usual, I had to find my way to true understanding on my own. No articles ever helped – they sometimes just confused me more.

Remember that amber I told you about sanding? That amber was my key. I did a meditation and journey with the amber, and “visited” the world where it was formed. Amber is tree resin – that obnoxious sticky stuff you get on your hand when you reach out and touch a pine tree (I bet you thought that was sap since I did, too, but resin differs in that it’s on the outside of the tree).

That sticky resin became amber over the course of 20 to 200 million years. The trees it came from are long extinct. And yet, the amber continues.

Why did this matter? Because I believe there is no life that does not have a soul or spirit to animate it. Not a blade of grass. Not a dog or cat or caribou. Our souls go from one life to the next and the next and the next.

True life – the life of our soul – never ends.

This life, this one where I have struggled & fought against chronic illness for 20 years, is but one of many. A precious gift, not to be wasted – instead, I needed to see it in perspective, see & feel the immense and grand sweep of time that life has existed on our beautiful Mother Earth, and see this one life for what it really is: a classroom. A place I came to learn important lessons as my soul evolves & grows.

Lessons like acceptance, and finding clarity in darkness.

Finally, I understand.