Ate dinner with the devil last night....

I posted last night on FB the only words that I could muster and those were….”I just had dinner with the devil incarnate”, and I meant them. Our second full day in Kauai started out beautifully. Since I have leisure time I don’t usually have, I headed to what I thought was mass time, and since I was off by an hour, I stayed in this little Hawaiian Catholic Church to say my daily Novena. It was perfect. I was all alone in God’s house. By the time I was done, I had several missed calls and texts, but the most important was that I needed to get back as our helicopter ride was scheduled. Now you have to understand, this way my idea, and you all know that A.E.D, after Evan’s death, my new perspective is leading me and what the heck, why not conquer my previous fears. The only concern I had now was making sure I didn’t get motion sick and was concerned I was taking the Bonine a little late. As soon as we got on the little tiny copter, and we took off backwards, the nausea started to engulf me and I wondered how I would do this for the next hour, but as soon as we started moving forward and I had the air vent pumping cool air in my face, all was good. It was amazing to see things that one can only see from this vantage point and I felt so blessed.

After our ride and lunch, Mark shared that his friend from his old Surfrider days invited us to dinner, so we soon packed up and headed out for the hour drive. Their house on an acre of land right on the beach was Mark’s dream, and his friend suggested Mark and the kids pack up the car with surfboards and head 5 minutes down the road for a surf session. To be hospitable, and I hoped to have a bit of time alone to say another Novena, I stayed back. I will mention these people know of Evan and our journey, and even mentioned to Mark that they planted a tree in their yard for Evan, but they never showed us where once we arrived. The couple was nice enough, both in their sixties and tremendous activists, both as a natural as they come with flowing grey locks. There house and gardens were strewn with Buddha everywhere, so I assumed this was their religious preference, but found out later it was not so. The gentleman is a proclaimed “atheist” and I don’t know her stance on religion, but do know she is very into the moon, stars and water guiding her every move. I didn’t know any of this when she offered me tea and we sat to chat. I was not about to bring up Evan and the cause, but after telling me all about themselves and their causes, she asked what I did. In not so great detail I simply stated that my days were kept busy with my kids and their activities which I feel so privileged to be part of, that we were overly busy but that is our mantra and we love it, and that the rest of my time was spent with the work of the foundation and dibbling a bit once again with my old life’s passions of fitness and nutrition.

I thought I had a captive audience as this gal probed a bit more about the foundation so I began my spiel, and that was when “he” walked in and sat. By this point, she was in the kitchen put sing around and “he” was right in front of me when he states very calmly and quietly, “ I don’t think you want to discuss this with me”. Now, remember, I know NOTHING about ‘him” at this point. But this is what I found this morning on his FB info….

his favorite quotes:
No Compromise for Mother Earth!
Constant Pressure, Endlessly Applied!

his activities and interests:
• Environmentalism
Meditation
Spirituality
Philosophy
Tantra
Nature
Zero Waste Kaua'i
Vegetarian Society of Hawai'i
Yoga
Sacred Sexuality
Tibetan Buddhism
Non-violent communication
Surfing
Cosmology
Backpacking
Waipa Foundation
Deforestation
Colorado River
Nuclear Waste
Great Pacific Garbage Patch
Earth first
Wetlands
Kalalau Valley
Veganism
Goddesses

And what I want you to know from the ensuing conversation and my several hour stint in this house, with these people, is this blanket statement….”when you read “his” words about his passions you will see nothing about the human beings that exist on this planet. And it is very clear to see how this person exists with this very screwed up mentality and how I will never every attempt to coerce anyone with this thinking to come to the bright side. I am very happy to let these types of individuals stay right where they are and let them “think” they are better than the rest of us. I will let my God take care of them on their judgment day, as I have told you many times over, I have my eyes on the prize and I intend to get a free pass right into those pearly gates because of the life I have chosen to lead on this earth.

I have shared on more than one occasion, that do to the nature of what I advocate for, the ignorance and lack of facts that individuals have in regards our work, will never go away. We will continue to encounter individuals who need to be taught, and because we are passionate and believe in the cause, we do most of the time take an individual from “no way that is scary and painful” to “I want to sign up”. I do not believe I will ever encounter the ignorance or thought process that this retired “general practice physician”, gone “granola” decided to share with this grieving mom for two reasons, one, I will never every place myself in that circumstance again, and two, I will never allow myself to be around individuals who will make the decision to be hurtful instead of just keeping these thoughts, and believe me they were thoughts as he had NO FACTS surrounding his rants, to himself. He must not have watched Bambi, when his kids were young, as who can forget Thumper saying, “if you can’t say something nice, don’t say nothing at all”.

Got to hop in the pool now, I have sweat dripping from every pore in my body!!

FYI, I am lounging in my own private paradise. It seems as this timeshare was just built, our building the only one occupied by maybe two dozen rooms if that. My fam is out scuba diving, not my thing, so I finally get some much needed alone time. Just hung up phone with Mary who asked my why I felt the need to write about last night, and I told her, this is part of the journey. I have been sharing my heart for almost 4 years now, and while it is cleansing for me, number one, I know that I will teach you all a bit about human nature and that I will get the much needed support after an attack of this nature from Evan’s entourage.

This man who worked his entire life for a prominent HMO in Los Angeles, has obviously been tainted by his experience. While I have never been a fan of HMOs, because early on I understood the importance of being able to make my own medical decisions in terms of who would care for my family, and it came to prove itself out for us as our PPO allowed us to take Evan where we needed to be for his best treatment option. I do also believe that HMOs do offer great services and that while you might have to be the squeaky wheel to get what you need if you fall into life challenges like us, you will get the care you need. And I also know that that same HMO in LA has one of the best palliative/hospice care programs offered in the entire country, so just this alone shows HMOs can be on the cutting edge if they choose to be. Anyway, I digress, this man did not have a good experience it seems. And while “he” remained in that job for his entire career hating it, and then for three years worked on the islands traveling to clinics where he was needed, he has now retired with a big old can of hatred for western medicine in his mouth. And he decided to beat me over the head with it.

I am not sure that I asked him why he felt this way, or if he just decided to tell me, but I knew this was one person I didn’t want to spar with from the get go as I didn’t get a good vibe from the moment this mother pulled in the gravel driveway. “he”, note that I am not even going to give this person the privilege of a capital “h” at the beginning of a sentence, and that is because I truly believe this person is evil and I am not sure that I have ever truly encountered “evil” in the form of another human being in my lifetime, and I surely hope that was the last time. he said “oncologists and transplanters are only out for the money. That they single-handedly have ruined the health care system, and that transplant is barbaric and that no human being should ever have to be put through it”. he went on to say “the cost of transplant and the outcome does not justify the life saved and that it should not exist”. Wow is all my little mind was saying as he was on his rant. I am not sure when I interjected, but I did tell him that I did agree that transplant was barbaric, that if tomorrow I was told I needed one to survive, my answer would be an unequivocal NO. I also shared two stories for him. That we had one friend, who just celebrated his 10 years cancer free from his stem cell transplant which was made possibly by his sister, sit down with us and say “don’t do It, don’t take Evan to transplant”. While we knew nothing of the reality of transplant, we knew two things, that without it Evan would die a horrific death, and that with it, Evan could be cured. There was NO choice for us. Others do have choices to make and guess what, thank GOD they have the options to go forward if they choose to. I did not share this thought with him. I also shared the story of our friend, who was in middle school at the time, who had gone through transplant a few years early, made possibly by this sister. Not an easy process for him, 101 days in the hospital which means he had a hell of a time, BUT Gannon told me he didn’t remember much of any of it and if he could go on another “make a wish” trip, he would do it again. Ahhh, out of the mouths of babes. I was thankful and still am, to know this young boy had very little memory of the process. Gannon and another friend Kevin, who had an autologus transplant meaning he used his own cells, were the ones to get Evan to comply and say yes to transplant. I will be forever grateful to these two boys.

“he” went on that no good comes out of transplant, hmmmm, should I send him some pictures of all those families and patients who would disagree with him, And by the way, he had no stats to quote, he knew nothing of transplant or the process, just that too many lifesaving efforts were available to people in general who should just be done with their lives. So it is at this point that I agreed with him. That I asked if he knew what an amazing palliative/hospice care program his HMO was part of, and that I had seen way too many patients in ICU whose families refused to stop treatment because the ICU docs always had another option for them. And that we are making headway in our medical system to start allowing families to be part of the chronic care/ end of life care options with palliative care coming into the picture more and more around the country. And then at some point, my phone vibrated on the ottoman in front of me and I let it go. But moments later I asked what time it was, calculating the time in Indy with Mary and stepping out to call her back to say goodnight.


As I walked calmly toward the beach, which by the way was disgusting, I won’t even go into what these people told us about the big companies in the area are doing to ruin the environment here and I do believe they are probably right on here, I could not call Mary soon enough and just start my conversation with I had just dabbled with the devil himself. I cried for a bit and then shared in detail what had just transpired. I made her stay on the phone with me for at least an hour, until the family arrived back, and then I had to just keep it all to myself as we listened to these people rant about how horrific this little piece of paradise they lived in was, but at the same time how they loved it here. WEIRD.

Thankfully being vegans, I knew I was getting a dinner I would thoroughly enjoy, even the kids managed to like it, two glasses of wine got me through, and then for some reason dinner ended on Derek’s migraines, where this piece of evil stated that if people would just nap when they had a headache all would be fine. That headaches were a product of stress and that if you didn’t allow yourself to be stressed all would be fine. And by the way, he did make a comment earlier with me that if we just ate properly, all would be fine. And of course that led me into the world of ALD and how food had nothing to do with the metabolic genetic disease which he had no comment for as he knew nothing about this beast that steals the lives of perfectly healthy boys, and which by the way, transplant is the only option for ALD treatment and if we can get these boys to transplant early, we have a 100% success rate that these boys can lead a normal life. Take that!! It was at this time that his wife, his third by the way, finally quietly disagreed with him that she had a headache for 3 weeks and that no a nap didn’t help. She then brought out the Hawaiian singing bowl, which she placed on Derek’s head and for the next 30 minutes, bonged his head and asked him to see the aura that it produced. Then we all had to try it, and while relaxing, I could not wait to run out of that house and all the way back to our timeshare. Oh, by the way, she had 14 women over the previous night to do a water ceremony, praying to the god of water to protect the ocean, and they prayed over a bottle of drinking water that she shared and insisted we all toast to and drink. Needless to say, I faked it as there was no chance in hell I was going to allow that idolized water to touch my insides.

Just finished my lunch, teri beef, brown rice and steamed broccoli (did my P90X workout this morning, by the way), have edited this journal and need to figure out how to sign off.

I woke this morning to Mark talking to Alaina about what happened last night. I didn’t realize the first thing they would do in the car, like me, was check FB. And they immediately were all over me with “what does that mean”. I asked Mark what great things he saw in this guy, and his response was apropos…..I have know his a long time, he is a serious activist, I don’t always agree with him, but he is a good guy. Well, that is when I told him we had just spent the evening with the devil, and I am sure he thought I was insane. I could hear Alaina this morning saying, but mom thinks he is the devil. And when he came in the room this morning, he could not help but ask again, what happened last night. All I could respond with was if you believe in God you must believe in the devil, and that that human being was evil. I told him I wasn’t ready to talk about and then I needed to journal later today. And here I am.

I now know why the Surfrider chapter that Mark presided over for 10 years could tell me that our cause had nothing to do with theirs. I now know that I will never partner with environmental groups, even though you would think it would be the perfect partnership, but I now know that these people are too involved in their efforts, to expand their efforts. Someone once told me that he loved “collaborative philanthropy” and I use that term now on a regular basis. I am interested in working with like-minded groups who understand our efforts singly will be better together. I hate that the LLS does nothing for raising funds and awareness to marrow registry even though 71% of their patients will need transplant. I hate the American Cancer Society refuses on paper to allow a marrow registry to be held at their Relay for Life. Some areas have allowed us in by choosing not to follow the written rules. We will just continue to do what we best, partnering with the American Red Cross at college blood drives and inspiring this population of potential lifesavers. And I will continue to keep my mind open to all causes, thanks to my encounter with the devil, who taught me multiple things in our session together, 1. Do something admirable with your time on this earth, 2. Realize how much suffering there is in the world and that you can help lessen it, somehow, 3. And don’t just talk about doing something, get off your ASS and just do it!!

Needing our entourage today,
Evan’s mom
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