Thursday, October 20, 2016

Cautiously Optimistic

Cautiously optimistic.

That’s what I keep telling everyone around me these days when they ask, “How are you feeling?” In the past the answer to that question has always had to do (mostly) with how badly I was feeling. The answer varying by degrees of “sickness” as well as degrees of “how-transparent-do-I-want-to-be-ness”. Responses such as, “I’m hanging in there” and “I’ve had better days” or maybe even “This has been a good week” are the typical responses. But never, in all of my drug therapies, hospitalizations, surgeries, infusions…never have I been able to say that I am cautiously optimistic. In fact, I have never used those words in regards to this illness. And it’s not cautiously optimistic. It’s more of a...

Cautiously Optimistic!! (said with a smile)

Before I go any further… Yes, this is good news. This is very good news indeed.

Am I all better? Oh man, do I wish! I’m still sick. I still have neurological issues, I still have pain, I still have joint trouble and headaches, fatigue and GI problems…. Yep, it’s all still there. But very, very seldom can I say confidently that these things are changing. Little by little, they are changing. Some more than others. And it’s for the better, not for the worse. Considering the past couple of years have been a steady decline with more and more frightening symptoms, this is some pretty awesome news.

Without getting into too many details, I can break things down into the converging of three events. One, the new chemo infusion I am on, Rituximab. Two, our trip to Montana (and a couple of scientists we met there.) And three, a Medium Chain Triglyceride Nutrient Dense Ketogenic diet.

I received my Rituximab infusion in May. The decision to go on this was because of the neurological degeneration I was experiencing, consistent with MS, but undiagnosed. I was told at the time I received it that if it worked, it could be a “miracle drug”. I was also told that I might not feel the effects of it until sometime after month three, maybe even four or five. About two weeks before we were to leave on our trip out to Montana this Fall, I had hints of starting to feel better. This thrilled me because Dave and I have never been on a true vacation without kids and this was some place that neither of us had ever been. If you follow me on facebook you already know how successful that trip was! It was truly a life changing experience.

Because I was starting to feel the positive effects of the chemo, I had less pain and fatigue. It was perfect timing. There I sat, mountains before me, and I actually felt like climbing them. The little over two weeks that we were there were a series of pivotal events. Each event put me in a place of literally and figuratively “me vs. mountain”. I did things I never thought I would ever do again - and some I won’t.  On numerous occasions I was in situations that were absolutely terrifying (and some not so smart!). Situations that included hiking at heights that I was unqualified to hike at, driving on mountain passes not made for a goat, getting lost in a desert canyon without food or water or glucose (for Dave) or phone reception or a gun or bear spray or sunset. Traversing paths where grizzlies and mountain lions reside without proper safety mechanisms… Now, before you send me a note scolding me, let it suffice to say that the majority of the time we were safe and took the right precautions. And some of that time we were relying on a friend that was much more qualified that either Dave nor I. But there were times where, in hindsight, we thought ourselves a bit foolish. But…. But...each time I found myself in this really odd space of being scared out of my mind and then working through that fear with mindfulness. Sometimes it was just pushing myself to a higher altitude, literally with each step, forcing all of my strength into the against mountain (illness). Sometimes it was absolute fear and having no place to go. No one to look to other than myself. Situations that I could not quickly get out of and had to think clearly about. In my mind, these are situations in the past where I would have broken down, freaked out, cried like a frightened child. But I didn’t. In any of them. Not one. I thought clearly, I was renewed a by lack of fatigue and I worked my way through each scenario. Each time ending in a place (figuratively and literally) that was a little bit higher than before. By the end of the trip, I felt like I could conquer the world. This feeling has not left.

Somewhere in all that adventure, we were hiking one of those paths we should have never been on and much to our surprise we came upon two people. That, in and of itself can be unusual when you are hiking little known paths, but really unusual in that they were both scientists. One specializing in diabetes and the other in...yep, autoimmune disease! We had a conversation with these two that, to this day, I still feel like. “Did that really happen?” But yes, it really did. We went back to our cabin that night and googled them! They had a lot of information to share on leading edge science in regards to immunology and cancer. We got information on studies to research, other scientists to look for, names of authors and a wealth of other valuable leads. We swapped emails and by the time we got home to Wisconsin Dave had already received an email with more information. That’s where the Medium Chain Triglyceride Nutrient Dense Ketogenic Diet comes in. Something much, much too complicated to discuss in this post, but if you want to read what I know about it and how it is working with me, click here.  

Needless to say, I began researching the second I got home. I consulted my doctors, began working with a special pharmacist, got blood work done and started the protocol immediately. Disclaimer: This is NOT a “diet”. This is a process in which food is used as medicine in a very particular manner. It is also not for everyone and should only be done after consulting with your physician. It can actually make you sick or make some conditions worse if not done properly.

This concept is not new (beginning in 1920) , although it has changed significantly in recent years. Currently, this protocol is being used successfully for severe epilepsy. Studies are underway and early signs are extremely encouraging for things such as MS, Autoimmune disease, Cancer, Parkinson’s, Alzheimer’s, TBI, Psychosis, to name a few. I have been told that the University of Minnesota currently uses a form of this for children with severe epilepsy. It seems to be most beneficial for diseases of the brain and nervous systems, but is also quite promising for autoimmune disease in general.

Because I was already experiencing improvement from the Rituximab, when combined with my new sense of empowerment (also known as "I'm ready to kick this disease in the ass!"), it made starting this incredibly complicated and not so fun protocol manageable. I’ll tell you right now, without the assistance of Rituximab, I would not have been capable of doing this. If I would have gotten this information three months ago I would have been too sick to even consider it. It takes a lot of work and thinking.The results have been nothing short of amazing. Immediately I noticed a decrease in fatigue and an increase in energy. Especially at the end of my day when I am usually so sick I just want Dave to rub my back so that I can disappear into a pill induced coma. Shortly thereafter I started realizing that some things were becoming easier for me. Remembering things. Writing and spelling. Multitasking. Driving. Balance. Brain fog. Headaches. All improving. Not gone by any means, and I have a long way to go, but improving.

So where to go from here? Well, I met with doctors this week and the plan is to stay on all medications with no changes. My next chemo infusion is scheduled for November. I will take two months to get strong after the second dose infusion and if things are still improving we can start tapering some medications in January, with hopes of getting off some. I am also starting to see a Functional Medicine Doctor at an integrative clinic, in conjunction with my team at the U of MN.

Do you know how exciting it is for me to type that? I am sitting here crying as I hit the keys. And yet...I am so scared. So I ask you to please keep me in your thoughts. Allow me to be positive, but don’t forget that I struggle every single day with this disease. This new endeavor is quite the challenge and it’s going to take a lot of strength and commitment on my part. I need your encouragement. I need your understanding. And most of all, I need for you to walk with me and be…

Cautiously Optimistic!

A million thank-yous would not be enough.


What I Know About Medium Chain Triglyceride Nutrient Dense Ketogenic Diets....and Lupus

I am not a doctor, nor do I hold any special degrees or training in medicine or nutrition. Therefore, the recommendations that I am following could easily change as more information becomes known through study and research. I encourage you to do your own research as I have done. Many of the past studies as well as current ongoing studies are available to read at no cost.
Much of the information I write abut comes from reading Dr. Terry Wahls' book,  The Wahls Protocol. I will also include information from studies I have read and will include a list at of those studies the end of this post. Once again, I am not a professional. My intent is to point you in a particular direction. My hope is that after reading this post, if you think this protocol is something you want to know more about, you will purchase Terry’s book and do your own research.

Please consult with your own doctor before trying this or any nutritional therapies. Attempting this protocol can be harmful if not followed properly. This protocol is not for everyone and should be considered in the same regard as new medication or supplementation. Consideration must be made for how it interacts with current medications as well as ongoing illness.

Terry Wahls used to run marathons, ski the American Birkebeiner and climb the mountains of Nepal. She even won a bronze medal in women’s full contact free sparring at the trials for the 1978 Pan American Games in Washington DC. She was also a doctor when, in 2000, she was diagnosed with MS. By 2007 she was in a tilt wheelchair, barely able to breathe sitting up. She was 52 years old. At this time she was on the same medication that I am currently on. I am also on an additional two chemotherapies that were not on her list.

Prior to this time, in 2002, her neurologist directed her to the website of a doctor who had reported that his son’s MS had improved by changing his diet. As a physician, she was hesitant to look into anything that seemed like “alternative care." Much to her surprise, the website was full of scientific references. She began to read them one by one. And what she found out was that this was not what she called "fringe medical practices", this was a website full of scientific references. It contained peer-reviewed journals written by scientists from the best medical schools. It was legitimate research. And it was in reading these studies that she became very interested in the role excessive carbohydrates and sugars played in the excess of insulin and inflammation.

Knowing that conventional medicine was not stopping the progression of her disease, she decided to change her diet and see if it had any impact while she continued her research. She read every mouse study she could get her hands on. She researched Parkinson’s disease, Alzheimer’s disease, Lou Gehrig’s disease and Huntington’s disease. She discovered that,

“ all four of those conditions, the mitochondria - small subunits within cells that manage the energy supply for that cell - stop working well and lead to early death of brain cells, causing shrinking of the brain. More searching lead to articles in which mouse brains and their mitochondria had been protected using vitamins and supplements…”

She translated those mouse-size nutrient amounts into human-sized ones. She consulted her doctor and they decided that each one was safe to add to her list. She took those amounts in pill form for two months and at the end of two months was so disappointed in the results she quit taking them. Within a few days she could not get out of bed.

It was working!

So she went to the Institute for Functional Medicine to find more information. The goal of this institute is to “provided clinicians with a better way to care for people with complex chronic disease by looking at how the interaction between genetics, diet, hormone balance, toxin exposures, infections and psychological factors contribute to the development of disease or the improvement of one's health and vitality”.  Through educating herself she learned that she could improve the condition of her mitochondria and brain cells. She knew that she had a genetic vulnerability that increased her chances of getting MS, but now she was developing a much better idea of the significance of leaky gut, food allergies, and toxins. And that mitochondria that were not providing enough energy for the cells, neurotransmitter problems and not having inefficient enzymes for the metabolism of B vitamins and sulfur all had a very significant impact on the BRAIN. She worked with doctors, scientists and nutrition experts and came up with a list of foods that would provide all the nutrients she needed without taking one single pill. This was the beginning of the Wahls Diet.

"The old me, who had relied on drugs and procedures to make my patients well, who had been made progressively more feeble by my illness, had been replaced with someone who understood intellectually and physically that disease begins at a cellular level, when cells are starved of the building blocks they need to conduct the chemistry of life properly, and that the root of optimal health begins with taking away the things that harm and confuse our cells while providing the body with the environment in which to thrive. I finally understood what I had to do to provide my cells with all the building blocks of life that they needed to heal. I was doing it, and it was working."

Today, Terry Wahsl still has MS. But she has not only improved her quality of life she has reversed much of her disease. And instead of being bound to a tilt wheelchair with a progressive disease she had no control over, she is once again an active, thriving doctor who rides her bike to work everyday, travels around the world lecturing to the medical community, appears on webinars, interviews, radio shows and talk shows. She has created a website where people can read her newsletters, watch recorded lectures and gain community support. She is also involved in ongoing research and clinical trial as well as written the The Wahls Protocol.

Terry’s overarching message to those with chronic disease is that you don’t have to be a victim.
You can actually repair your broken biochemistry and restore your body's vitality by how you live your life.

That’s huge news for anyone with an autoimmune disease! Instead of taking pills for symptoms, she was living proof that you could eat food to heal your body at a cellular level. Chronic disease is never a deficiency of the drugs you are taking for it, but a deficiency in your own cells and it is the most obvious manifestation of long term mitochondrial dysfunction. When your mitochondria are not fueling your body correctly, entire bodily systems don't work properly and in a negative spiraling chain reaction, eventually lead to organ dysfunction and chronic disease.

"Diabetes, heart failure, hepatitis C, fibromyalgia, schizophrenia, mood disorders, epilepsy, strokes, neuropathy, memory problems and autoimmune disease are just a few disease linked to mitochondrial dysfunction."

A little biochemistry.

Most cells in your body contain mitochondria. Some have a lot more than others. The more energy a cell needs to function properly, the more mitochondria it needs to produce the energy it needs. For example, your brain, retina, heart and liver cells all contain a lot more mitochondria that most other cells because thinking, seeing, pumping blood and processing toxins are all things that require high energy.

All cells eventually die and it is the job of mitochondria to send the signal when that time is appropriate. (Not before!)

Mitochondria also produce ATP (adenosine triphosphate) which stores energy, helps your body to create proteins and antibodies, and it is the FUEL used by our cells for ALL that they do. Without it, cells begin to function improperly and eventually die prematurely.

To produce ATP efficiently, the most important things your mitochondria need are glucose or ketone bodies from fat and oxygen. Your mitochondria can get by for awhile on only those things, but to do the most efficient job and to live they also need vitamin B1, B2, B3, B5, sulfur, zinc, magnesium, iron, manganese, antioxidants, L-carnitine, alpha-lipoic acid, creatine and coenzyme Q. They also need to be protected from toxins like arsenic, lead and mercury. If this basic process does not happen your cells will produce less energy and more waste (free radicals).

Dr. Wahls gives a great example of the progressive signs of mitochondrial dysfunction in a person’s life,

I hope you can still remember a day when you felt well. You could work or play all day and you felt happy, or at least normal, in your body. At some point, however, you probably noticed some subtle changes. Perhaps you noticed that you couldn’t move as freely or think as clearly, or you began to experience pain. These very outward symptoms were a signal that your biochemistry was changing. The signaling between your cells was gradually becoming confused.
You could recognize that you didn’t feel well, though you may not have been able to explain precisely what was amiss. You eventually saw your doctor, who performed an examination and conducted blood tests but found nothing wrong. Perhaps you were told to come back in a year. When you did, you felt a little worse than you did the year before, but all your tests still looked okay and the doctor continued to say you were “fine.” Perhaps this dance went on for years, perhaps decades, before your body finally suffered enough damage that a test or two began to come up abnormal. Finally, your doctor began to investigate more seriously. And perhaps, at long last, you were given a diagnosis. Your doctor had not been trained in functional medicine, and so opportunities to recover your vitality were missed, but the inexorable process of biochemical decline was happening all along, through all those years of negative test results and doctors reassuring you. Your body began to produce and accumulate incorrectly made molecules in your cells and your organs. To you, you probably felt like the music of your life slowly began to deteriorate, note by note, losing the melody and harmony, moving from a beautiful symphonic concert to a chaotic noise. That is how it felt to me.

At a cellular level MS, autoimmune disease and chronic diseases like diabetes and heart disease and some mood disorders like depression, autism and schizophrenia all look pretty much the same - they all share mitochondrial dysfunction.

Health problems begin in the cells.
If your dysfunctional cells produce symptoms of X, Y and Z...they label you with MS. If your dysfunctional cells produce symptoms of A, B and C...they label you with Lupus. If your dysfunctional cells produce symptoms of L, M and N...they label you with heart disease, and so on. Like Terry says, diagnosis are simply "labels doctors put on conditions, based on parts they can actually quantify, like symptoms, test results and which medications improve or worsen symptoms, as well as through a process of elimination." Remember that when giving weight and importance to getting a diagnosis.

When science looks at the cellular level, all autoimmune diseases have six common characteristics according to Dr. Wahls.

  1. Mitochondria are strained, producing energy inefficiently and producing too much waste. This leads to too many free radicals in the body, which damage cells.
  2. The immune cells are too reactive, leading to excessive inflammation throughout the body.
  3. The immune cells specifically attack “self” or cell structures that belong to us.
  4. Toxins such as lead, mercury, and pesticides stored in the body and chronic low-grade infections such as Lyme disease or even periodontal (gum) infection worsen autoimmune-related symptoms.
  5. Low vitamin D and excessive hormone levels are present, both which worsen inflammation.
  6. Deficiencies or excesses of particular vitamins, minerals, essential fatty acids and antioxidants phytonutrient molecules are common.

Your DNA could very well predispose you to certain diseases. These mutated DNA could effect inflammation control, how toxins are managed, how we absorb nutrients, how effective hormones work and effectiveness of neurotransmitters. But the truth is that scientists believe that it’s epigenetics (your environment and what you eat) that determine about 70-95 percent of your risk of developing those diseases. Very few conditions are caused solely by a single mutation in your DNA. Those mutated DNA can be sitting there causing you no problem whatsoever and then if you have enough cellular dysfunction (caused by the lack of proper nutrients and the presence of toxins, including those the body creates during times of stress), those DNA switches that are turned off can easily be turned on. The simple flip of a genetic switch. You can not only stop that switch from being turned on, you can actually reverse cell damage. Terry Wahls and countless other patients are living proof. My goal is to be part of that growing (and healing) body of evidence!

What is The Wahls Diet?

The development of the Wahls Diet did not happen all at once. As Dr. Wahls learned information from her own experience, from clinical trials and previous studies, various steps of the diet were developed. What exists today is a diet that can be customized in regards to the needs of the individual. For example, is the diet solely for the purpose of eating healthier, is it for someone already suffering from mild chronic illness or is it for the patient already in a specific disease state? Depending on the need, there are three levels,

  1. The Wahls Diet. The most basic level that kick-starts your system by infusing it with intense nutrition and removing dietary elements that could contribute to your decline.
  2. Wahls Paleo. The next level, and the level where many people choose to stay, provides more structure to further eliminate dietary elements that can compromise gut health.
  3. Wahls Paleo Plus. The most difficult level is also the most therapeutic for those with autoimmune conditions and is particularly beneficial for anyone with neurological or psychological issues, whatever the underlying disease state, as well as those with a history of cancer. (Only at this level is a state of ketosis maintained)

There is a long history of the use of various forms of ketogenic diets. Much of that history littered with outcomes that came with a price. Dating back to the early 1900’s, ketogenic diets were used for people with diabetes (people who needed to survive on a diet with no carbohydrates) and epilepsy. And to this day doctors will place children with severe epilepsy on it.

Historically, the studies were successful in stopping seizures, but most children ended up nutritionally starved and suffered from things such as kidney stones, loss of vitamin C, too much uric acid, malnourishment and fractures. As time went on, variations of the diet included increasing fats so that more nutrient dense carbohydrates could be included. As science has learned more about nutrition, outcomes have improved significantly. Ketogenics can be highly effective with certain neurological conditions but can cause serious health issues if not implemented correctly.

Dr. Wahls version of the ketogenic diet is one that includes and is limited to the use of Medium Chain Triglyceride fats only, such as coconut oil and olive oil. When you are on a ketogenic diet, the body is in a state of ketosis. Ketosis is when there are ketones present in the blood. Ketones can replace glucose as an energy source for the cells. They are very small molecules that are soluble by water and can cross cell membranes and diffuse all through the body. Ketones can also get to places without a blood supply, so in cases of heart attack, stroke or TBI, they can help you stay alive. The are a very interesting and extremely powerful macronutrient and have huge applications for healing. They diffuse into the brain and the brain can use them for energy. The brain does not absorb fats very well from the body and relies primarily on glucose (which needs transporters to get around) for an energy source (cells need energy to function properly). Ketones can replace glucose as an energy source in the brain. For people with conditions of the brain, this can be incredibly beneficial.

The difference between the Standard Ketogenic Diet and Dr. Wahls' Medium Chain Triglyceride(MCT) Diet has to do with how long the triglyceride is. The longer the chain the more ketones are produced, and therefore the more carbohydrates can be tolerated (making this  even more nutrient dense than the standard diet.)

At this point in my findings, I had a lot of questions. Some were answered in Terry’s book. Some were answered, but I felt those answers were tailored more towards MS.  Some sent me reading journals, studies and whatever scholarly articles I could find. For me, I need to understand the science before it makes sense to me. And this protocol makes more sense than anything I have ever researched or done. Prior to getting really sick in 2009, I had all the ingredients leading to a perfect storm. I had the hereditary factor. I had indications of chronic illness. I was under tremendous stress. I was running marathons on an almost completely carbohydrate, low nutrient diet. I was literally starving my cells of the minerals and nutrients they needed to survive. For me, knowing how to fix this at a cellular level means understanding the best I can, what cells need to do their job. What causes mitochondrial dysfunction? Literally, what happens to the DNA? What role does oxidative stress have on DNA? And more specifically in the pathology and treatment of Systemic Lupus Erythematosus.

We also know that with mitochondrial dysfunction there is an inability to rid the body of toxins. In other words, our antioxidant enzyme systems are not working properly and therefore not protecting the body against radical induced cell damage. How do I improve this? These enzymes require cofactors such as selenium, iron, copper, zinc, and manganese for optimum catalytic activity. It has been suggested that a diet lacking in these minerals may compromise the effectiveness of these antioxidant defense mechanisms. So, what if I increase those foods as Dr. Wahls has suggested? And a subject I have not even touched on, but has a lot to do with this protocol is the benefit of fasting. There are studies with proven data on the effectiveness of Diet Mimicking Fasting and how it promotes regeneration and reduces autoimmunity. So many questions I can’t even begin to write them all down. Well, I can, but I’m fairly certain I have lost just about every reader by this time! The moral to this paragraph is this - the more I peel the layers of the onion back, the more I answer my own questions, the more a MCT Nutrient Dense Ketogenic Diet makes sense for me. At least in the short run.

In fact, I will mention before my science/medical friends fall off the deep end, this is not a permanent solution. At this point, there are no studies concluding how long the human body can be in ketosis. Right now, there are huge short term gains with possible long term side effects. Dr. Wahls was in ketosis for two years before she dropped down to a lesser degree of the diet. Now she is in and out of ketosis more consistent with her cultural heritage. (ie, Eskimos are known to be in ketosis more often than Europeans due to climate and the inability to get carbohydrates)

My plan, under the supervision of my doctors is to be in ketosis for seven months and then drop down to the next level for five months, an MCT nutrient dense paleo version. At a minimum I have improved my diet immensely, knocked out all processed foods and sugars and no longer consume gluten or dairy in any form. I am also working hard to rid my life of toxins as well as STRESS. Both which play a big role in epigenetics.

So far...really good! That’s my motto! I am showing consistent improvement every day. Is this a cure? Nope, not yet. There is no research to say anything of the sort. But there is all kinds of good stuff out there from simply reducing pain and fatigue to actually reversing cell damage and increasing cell mitochondria. Yes, healing! Not just taking a pill to cover up a symptom!

Please let me know if you would like more information. I am thrilled to pass on studies, answer questions, send links, let you borrow my book! Whatever I can do, it would be my pleasure. For me, taking control of my health is incredibly empowering. In fact, the placebo effect from that alone is most likely off the charts. But hey, whatever it takes. Thanks for sticking with me and I hope to hear from some of you.


Terry Wahls, M.D.

Terry Wahls, M.D. TEDx Talk, Minding Your Mitochondria


Ketogenic diets, mitochondria, and neurological diseases

A Diet Mimicking Fasting Promotes Regeneration and Reduces Autoimmunity and Multiple Sclerosis Symptoms.

Defective DNA Repair and Chromatin Organization in Patients with Quiescent Systemic Lupus Erythematosus.

The Therapeutic Potential of the Ketogenic Diet in Treating Progressive Multiple Sclerosis

Oxidative Stress and its Biomarkers in Systemic Lupus Erythematosus

Oxidative Stress In the Pathology and Treatment of Systemic Lupus Erythematosus

Repair of Oxidative DNA Damage: Mechanisms and Functions.

Role for Oxidized Mitochondrial DNA in Lupus Revealed

Oxidized Mitochondrial DNA Advances Lupus Pathogenesis

Baylor Study Reveals Role for Oxidized Mitochondrial DNA in Lupus

How Can NRF2 Benefit You?

The Nrf2-Antioxidant Response Element Signaling Pathway and Its Activation by Oxidative Stress

The role of antioxidant supplement in immune system, neoplastic, and neurodegenerative disorders: a point of view for an assessment of the risk/benefit profile

Ketogenic Diets as an Adjuvant Cancer Therapy: History and Potential Mechanism

Tuesday, June 14, 2016

What Can I Do?

The Orlando shooting happened this past Sunday morning. As was the case of many on social media, my facebook feed was inundated not only with posts of sadness at the world's recent events, but it was full with aggression. The combination of this horrible and tragic event, on top of all that is going on in the political world right now, spewed anger and hatred all over a feed that is generally speckled with posts from artists, spirituality websites, funny cat videos and summer vacations. They simply went away. Or some facebook algorithm pushed them so deep that even my unusually high amount of surfing today didn’t reach them. Understandably so.

The first time in my history with facebook I had to unfriend someone. Someone I hold dear. Someone I would rather keep in contact with. Someone, who like me, has suffered great illness and understands what it means to still be walking on this planet. This was very hard for me, for a number of reasons. Mostly because I care about this person, but also because I value the opinions of people who don’t think like me. I truly do. But this friend became so angry, so full of hatred, their language so hurtful that the conversation was just shut down. It no longer retained the basic characteristics of “an informal exchange of ideas”. There simply was no exchange. One view, full of anger and hatred, limited in fact and gross in overgeneralization - with an unwillingness to hear or respect the views of others. I had blocked this person from showing up in my newsfeed a while back, but today my attention was brought to something this person had said recently. Upon reading the words written, I decided that as difficult as it was, I had to do something. My passive “hoping” that the situation would resolve itself or that I could maintain the relationship by avoiding this person’s behavior was no longer a solution...if it ever was.

Feeling not well enough to really do anything physical today, I spent an unusual amount of time paging through my facebook newsfeed, surfing news articles and listening to online news radio. I purposefully read and listened to as much as I could from both sides of "the story”, trying not to get involved in sensationalism on either end (which is basically impossible, but I gave it my best shot). The Orlando news, intertwined with all the political agendas on both sides, made it intensely difficult. Beyond my ideas of why this happened or how it happened or what the solution is, lies a profound sadness and the heavy feeling of helplessness. Over and over and over again, the question in my head... What can I do? What can I do? What can I do? This sense that the world has gotten so out of control left me feeling like the only thing I truly can change is me. Overwhelmed with the bigger picture, yet longing desperately to do something. What can I do?...

Then, I stumble upon a video shared on facebook of Stephen Colbert’s reaction to the Orlando shooting. These are the words he ended on,

It's easy, it's almost tempting to be paralyzed by such a monstrously hateful act, to despair, and say, 'That's the way the world is now.' Well, I don't know what to do, but I do know that despair is a victory for hate. Hate wants us to be too weak to change anything. ... Love is not despair. Love makes us strong. Love gives us the courage to act. Love gives us hope that change is possible. Love allows us to change the script. So love your country, love your family, love the families and the victims and the people of Orlando but let's remember that love is a verb. And to love means to do something.

And again, as I surfed aimlessly, I found myself watching a video of the Dalai Lama at the Youth World Peace Conference. In his opening remarks he offers a few moments of silence for a time of prayer and then says,

Although some are quite skeptical about the effects of prayer, it has to come through action. Serious action, continuously, despite difficulties and a lot of obstacles, we cannot lose our determination, our courage. And on top of that, some prayer is ok, no harm. Without action, it is just prayer.

Love, in action, is compassion. Compassion, by definition, is “a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate that suffering.” What can I do? What can I do? What can I do?

There was a lot hate and anger and finger pointing and blaming and judging on facebook today. So much so that by tonight I felt like I needed to sage the house just to help myself let go of it all. It hung heavy on the humidity that came rolling in with the storms. Heavy and dark. I understand these reactions. Because that is exactly what they are - reactions. And quite often, they come fast and they come heated. But one post, one very well written and brave reaction to an article describing the complicated history of the shooter, dared to show compassion for the shooter. She wrote, “While I utterly, utterly condemn his atrocious actions, I also believe we must extend some compassion to him for his own distress.” Unimaginable? Maybe. Impossible? I don’t believe so. And it really made me think.

After sitting here today, reading all the news articles and surfing through all the posts, I found myself so angry, so full of what feels like hatred to me. A justified hatred. A hatred that comes easy in light of such tragedy. A hatred that comes easy when listening to racism and sexism and rape and murder and lying and all that fills our news. We’ve had enough. And nothing seems sweeter in light of fear, than justified hatred and anger. Yet nothing is further from the solution.

Compassion must have the final word. And compassion does not mean agreeing with everyone. And it surely does not mean letting people get by with things that are harmful. Just as I had to “unfriend” someone very important to me, there are times when difficult things have to be done (to speak on an extremely simplified level) or said. Compassion is not easy. For one thing, it threatens our ego. In order to have compassion you have to put yourself in someone else’s shoes. Let go of what you know. Move toward the pain of the world, beyond bias, beyond prejudice and fixed opinions and open your heart to people - those we like and more importantly, those we don’t like. Compassion counteracts our tendency to stay stuck in our way of thinking and counteracts our resistance to change. Instead of acting or reacting with aggression when we are provoked, endlessly perpetuating the cycle of aggression, we trust that we can interact with others from a place of inquisitiveness, calm and caring, without feeling threatened.

I don’t claim to know the answers to all of life’s difficult questions these days. But this I do know, the answer to even the smallest of these is not hatred. It never will be. And some of the most daring work we can ever do is to challenge our own way of thinking - our fixed ideas, the labels we are so invested in, our conventional ways of experiencing things, our opinions of right and wrong. It’s not until we do this that we can move beyond bias and prejudice and actually care for people, actually make a difference. With all that I feel helpless about, this I can do.  

This I can do.  

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