Ashley Elliott, The Road to Sobriety; A Call for Resources in Rural Communities to Combat Drug Usage, Stigma & Addiction.

"The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma. Get past the negativity of addiction and see it simply as what it is and that's a disease" Ashley Elliot.

 


Ashley’s Health Journey Through Addiction

My story more often than not, coincides with addiction. I am a recovering heroin addict. I've been clean since December 28th 2012 and since I've gotten clean I decided to take a path to help others whenever they're struggling. I know for me when I felt hopeless if it wasn't for the women in my life that had lifted me up I don't think I would have made it .

My goal is to help those find hope that think there's no hope. In my darkest days I would say I probably had no idea what was going on at any given time. I went from being an all honor student in my freshman and sophomore years of high school-- straight A's to slowly decreasing my workload. I was a merit student my junior year and by the time was a senior I was a general student. Luckily enough I still graduated with merit a diploma.

That was the start of the dark days that really just kind of involved drinking along with experimenting with a few different substances, nothing too extreme. By the time I had graduated high school I would consider myself pretty deep into my addiction not rock bottom but still pretty deep. What would happen over the next twelve years would be me finding my own, falling in love.

I always made the joke that heroin was my first love, it never failed me, it never let me down. Every time I wanted to do something it changed the way I felt, it did just that. After that point it was really weird. I went from using to needing and I don't remember it. I don't remember when I went from recreational use to addiction, to dependency.

I would go through several different treatment centers, methadone centers. I tried suboxone. I tried moving to California. I thought if I just packed my bags, leave and go somewhere else where nobody knew me I could just start over and be whoever I wanted to be. The problem with that is wherever you go there you are you know. At that time I didn't realize the problem was me. I thought it was the drugs. I was in two very abusive relationships. The first one was we were living in Nevada and he ended up head-butting me and breaking my nose in the front lawn of our home. Shortly after that I had ended up running into an old friend out in California. She saw me and I think I’d probably been about 140lbs at the time. My collar bones were sticking out, I was rather frail. She bought me a plane ticket and three days later I came home.

When I came home I just got involved with the same people. When I did that, that’s is when the legal stuff started happening. The first time I ever got I trouble I had actually lived right up the street. The apartment that I was living in got raided and that was the first time I had been arrested. After that point it was just one after another getting arrested. Eventually I tried to do it on my own. Got involved with another boyfriend who was rather abusive. Fast forward my first treatment center I decided to leave AA, which is against medical advice. My thought process was; I was going to leave, come home, use go to court and go to jail

I was okay with that. I thought that was a solid plan to me. That's how crazy the disease of addiction is. I did that, I left, I came home, I used, went to court and the judge said “Punish her to rehab”, which was not a part of my plan. Over the next two months I had to wait 30 days because I left AA. I had to wait another 30 days for a bed to open up. Within those two months the apartment I was living in had burned down. Under the Influence I had fallen asleep on my hand for an extended period of time which caused something called Saturday Night Palsy.

It’s where an addict or an alcoholic passes out on the extremity and does nerve damage. I had no use of my hand for over three months. I was an I.V. user and there was a point in time where a needle had broken off into my arm and I left it there for six years until I had gotten clean and got a straight head on and I had surgery to have that removed. My kidney functions are extremely low. The way they explained it to me is that my kidney function is that of a 70 year old. I think that's due to all of the different opioids and the wear and tear on the body.

Emotional Health and Addiction

A big part of the health effects is the emotional state that people wanders in while being in addiction---I'm a very outgoing person and I can talk to just about anyone, anywhere about anything. When I was using, I was afraid to leave my house. I'd lived less than two or three hundred yards from a grocery store and it took everything inside of me to get up, get myself dressed to go to the grocery store just because my anxiety levels were so high. A lot of people use to try and escape their feelings of depression or anxiety.

In reality the only thing it does is increase this. I was going through panic attacks, and a lot of the different medications. I was having on medication induced seizures. I just think of it I felt like my body just couldn't go anymore. My sister pointed it out the most. The way that my family always knew I was using, was how much I weighed because I would get her periods of extreme weight loss while using and then gaining that back while attempting to get clean. The health effects I had have lasting effects, psychologically, physically, and emotionally. It takes a long time to heal all that stuff, to accept it, deal with it and move forward with it.

Finding a Support System in a Sponsor

I do honestly say that without my sponsorship family I don't think I would still be clean today. When I went into treatment the first thing I told my counselor was “I'm going to tell you I want to go home, not to let me go home. Don’t let me go home”. But she didn’t, she relocated me to a halfway house down in Frederick Maryland. While you're in treatment it's basically almost like a brainwash. I’ll say if I needed to be brainwashed to get away from whatever I was doing before I was totally okay with it. I really got involved in a twelve step program. It took me about six months after I was really involved in the program to be clean.

The reason that is like I said look for my clean is December 28, 2012. This was the first year I was down in Frederick, I was my first Christmas. I remember I was getting ready to come home and my sponsor and I had come up with this plan where I stay at my sister's, she's my safe zone. No contact with old friends or ex’s. I didn't do anything she suggested. When I went home I think the first thing I did was contact my ex. he brought my dog over. My sister's kids were so I ended up staying at my parents which I ended up using, so I'd used all over Christmas. It was December 27th, my best friend and my sponsorship family called me to wish me a Merry Christmas. I thought what we had was just a normal conversation. When I got off the phone probably less than five minutes later my sponsor called me and trying to walk me through my thought process.

I had my dog which meant I saw my ex, I was at my parents which is not a good place for me. She was trying to get me to realize all the decisions I was making weren’t necessarily the best ones. The last thing she said to me was---she worked the night shift as a security guard at a prison and she said “I don't have to work tonight. I don't know if you want to white knuckle your way through this situation, but if you don't I'll come and get you”. I was kind of just like “Okay you know I'll think about it. I'll call you back”.

When I hung up the phone it was at that moment that I realize that these people that I barely knew six months really wanted nothing but the best for me. I think that was my reality check. I ended up calling her back and I said “Come get me”. My sponsor and my best friend drove three and a half hours from Frederick up to Garrett County in the middle of a snow storm to pick me up and take me back home. That’s why I consider the 28th my clean date because I haven’t used since. I don’t drink, I pretty much don’t do anything.

Trials During Recovery

Throughout my early recovery and my first year or two I remember a period where it was around my first year clean and they say in the twelve step program that at your anniversaries you start going crazy. That's what I was experiencing. It was around my first year I had no idea why but I just wanted to mess things up. You know I knew I couldn't quit my job because I needed my job. I liked my friends so I didn't want to screw anything up with them.

I just couldn't come up with anything to ruin, but that's all I was thinking about because I was an addict. A lot of times my first thought is self-destruction especially when I can’t deal with feelings whether they be good or bad. I remember texting both my sponsor and my best friend and telling them that everything I was doing was reminding me of using.

My best friend sent me this long message of all of the things she knew about me through my active addiction, including you know the abusive ex's and going to jail and all that stuff. Then she sent me another message of everything that we had done in recovery and now. I'm saying your first year of recovery I lived more than I did in those twelve years of using even though I went all over the place, California, Nevada etc.. I still didn't really experience anything because I was never present in the movement. When she sent that to me she followed it up with “Think about those two and then tell me if you still want to use”. I was living with my sponsor at the time, I’d gotten home and she told me to get dressed and I didn't know why, she didn't tell me. She just tell me to get dressed.

I got dressed and my grand sponsor, which was her sponsor showed up and they took me to a baseball game and made me sit there. I sat at this baseball game and I cried. I cried and I cried and I cried and my grand sponsor's theory was always “When you don't know what to do you sit on your hands”. That's what I did. I just had to sit through it and here I am at the Frederick baseball game, everyone’s having a heyday and I'm bawling because honestly I don't know why.

Situations like that, like if they weren't there for me in those moments, if I were to allow my own thought process to continue I eventually would have came up with the idea of the best solution right now is to go use. I strongly agree that a social support, an emotional support, it is a key component of recovery, you cant do it alone. It’s a lot easier when you have people who understand what you've been through.

Sobriety & Stigma from the Medical Setting to Society.

I know for me sometimes it's tough with my health issue trying to talk to a doctor and being taken seriously. I'm a recovering addict and once they hear that, the word human being goes out the window. It's definitely tough and sometimes you've got to have thick skin because there are some pretty mean people that have a very closed mind and aren't very understanding. I kind of just smile and nod at those people. It’s been six years since I entered my first treatment center and in two days I'll graduate from college. That's crazy to me to think back to where I was.

Sharing Story to Impact Change

I remember when I went to MedX to speak on a panel session. Standing outside and seeing the big sign that said Stanford University and I just thought to myself “How did I get here?” I didn't understand it was so weird. I do attribute it a lot of this to Regina Holliday. If Regina hadn't brought me to Cinderblocks, if she wouldn't have asked me to share my story, all of these other people wouldn’t have heard it and I wouldn’t have had the opportunities that I've had over the past year. I remember when I told my family what was wrong with me, what was wrong with me being addicted to drugs at that time.

It was suggested to me by my counselor at the treatment center that I was at. I was an outpatient methadone treatment center. I gather my family together granted my family is well known in the community. My brother in the department of juvenile justice for 20 years. He’s the Cub Scout leader. Everybody knows my brother, both my sisters, one’s a teacher an elementary school teacher and the other one is a guidance counselor secretary. You could definitely say I was the black sheep of the family and I remember when I told them they didn't understand because they didn't know and they didn't know anything about it.

Public Health, Education & Addiction

If people were more educated about addiction, what causes it. The interactions, the pharmacology between the different substances. How they affect the brain. Just stepping outside of their shoes and trying to look at it from a different perspective I think that would have a huge impact on things. A lot of people feel shame and guilt because of their addiction and are embarrassed to talk about it. One of the doctors on the panel at MedX said it best, for years addicts have been lepers. That's what we are once you have that label there's no turning back. Again, when people don't have that in mind, the empathy or compassion to understand, they don't get it.

It’s a fruitless battle. I definitely feel that education, knowledge, understanding simple human being decency is needed. Nobody deserves to die no matter what they choose to do or chose to do it, I hear that a lot. “They chose to use so they deserve to die”. I can speak from experience that there were many times I used against my own will. I did want to be doing what I was doing but I knew physically I couldn’t go on without it because I was dependent on it. In our twelve step program we say “Drugs aren't the issue. Drugs are side effects of addiction”. Our real problem is the way that we think and the way that we feel and not being able to cope with those things. It's exhausting and it's long it does take a lot of motivation. I would say self-will but that's really nothing at all one has to deal with.

A Call for Resources in Rural Communities.

Whenever I was using in this small town I had no idea about resources because it wasn't something people talked about. I remember going to treatment and going to my first twelve step program and they're like “You’ve never been to a meeting before?” and I had no idea what a meeting was. I didn't have the resources here. The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma.

Get past the negativity of addiction and see it simply as what it is and that's a disease. Much like a diabetic who takes their insulin every day, an addict get a daily reprieve by simply choosing not to use and more often than not when the addict that chooses not to use is a miracle. Because everything in my being says use, use, use and every day that I choose not to do that is a miracle and nothing short of that.


Ashley Elliott is a recovering addict, patient advocate, psychology major, guest speaker at Medicine X and repeated speaker at Regina Holliday’s Cinderblocks5

Contact Ashley Elliott: Twitter

Anna Legassie | Six Hips and Counting

"We need transparency across every aspect of patient care right now. I know that it's very easy to point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases" Anna Legassie. 

 

Anna Legassie is an Athlete, Writer, and Advocate.

Welcome to Anna’s Health Journey

I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.

Navigating Bureaucratic Insurance policies

I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.

Living with chronic illness through early adulthood

Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had  no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.

Arthritis, Surgeries and Resiliency

It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.

Mental capability of Coping with Chronic Illnesses as a Child

I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.

Managing Trauma from having major chronic illnesses, multiple surgeries & consistent series of hospitalizations as a child.

The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.

Advice to Chronically Ill Patients

It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.

Perspectives on Achieving Human Centered Care; Advice to all Actors in the Healthcare Space

I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.

Most Urgent Need in fixing Healthcare Today

We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.

Transitioning from Patient to Patient Advocate

I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.  
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.

A Wish for the Future of Healthcare

I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!

Contact Info: Website | Twitter | Instagram

Howard Chang "The Itch to Beat Psoriasis"

"Because there's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them" Howard Chang, Min


Rev. Howard Chang is a psoriasis advocate, a blog writer for Everyday Health called The Itch to Beat Psoriasis. He is a social ambassador for the National Psoriasis Foundation and is also a part of their Advocacy Network in the Western Region.


Howard’s Introduction to Blogging

I started blogging for psoriasis on a site called Health Talk about eleven/twelve years ago and the site just started out with some patients that were blogging. And so I said----You know I was at a point where I was really struggling with my skin disease and had started dealing with it better and thought that it would be a great opportunity to share my experiences living with psoriasis. When I first started there were very few people who were blogging, there wasn't really that much social media at the time.

It really was an unmet need that I saw and I also saw that psoriasis being skin diseases is the kind of condition and people would try to hide from and maybe stay behind doors. They would withdraw socially, so I thought writing was a great way especially as the Internet was developing to get into people's living rooms, to speak to people who were feeling very alone with the condition and really struggling on their own.

Psoriasis & the Lack of Representation of Diverse Populations in the Media

I never really thought about being Chinese or being Asian and having Psoriasis. I just thought I have psoriasis and I want to share my story, but it's true, just in general in the media Asian Americans are not represented especially out here In the West Coast. We're a lot greater in percentage of the population is Asian and we don't really see that represented in the media.

I definitely agree with that, that there are fewer Asians out there and people who are minorities who are advocating. I go to conferences to advocate--with other advocates or psoriasis conferences and there are few Asians. I think it's something that I've become more and more aware of and proud to have been the vanguard or to really get that going and hopefully others will step into the gap as well.

Bridging the Gap with Resources

Online resources are great and there are also groups that may be meeting locally with the National Psoriasis Foundation or other organizations, advocacy organizations, but definitely the foundation is the big one that I and other advocates are part of. Online resources and getting online, there's so many more resources now than there were when I started blogging.

It's really incredible that there are advocates from all different walks of life and backgrounds that you can connect with, that you can talk to, that you can tweet or go on Instagram or Facebook and so forth to make that connection. Sometimes it's not that easy to do it locally or even with their own family.

Getting involved with Policy Advocacy

I volunteered the National Psoriasis Foundation and just recently I got more involved with advocacy and legislative work. Last few years I've gone to Sacramento which starts state capital here in California and we've worked on different health care bills that are primarily related to access to care, prescription cost, benefits things like that.

There's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them or they don't know about them and sometimes the legislation and just the way that the health care system which is so complicated that I don’t think anyone can really figure.

But it's inhibiting people from them to be able to get the treatments that they really could use ad needs. I started Sacramento and---just this March I was able to go to Capitol Hill as well, which is an awesome experience. It was the first time that I’ve got to do that, but I've done about four or five state advocacy days as well as the Capitol Hill day of the National Psoriasis Foundation in March.

The Foundation is the largest advocacy group in the world. It represents the eight million people in the states who have psoriasis. They’re based out in Portland but they're really national organization and they have an incredible website and that's a great place to start. Its www.psoriasis.org. It’s very easy to remember and they have pages there for all kinds of things.

There’s a patient navigation center that you can ask questions about anything and there is also an advocacy page and it's a great way to get started to see what are some ways that you can get involved. Getting on a mailing lists, writing your legislators, get involved in some local events, that kind of thing can be found on the website and you can get connected with stuff there or any of the advocates like myself who volunteer with the foundation.

Health Care Legislation, and the Power of the Patient Voice

I used to think that way too, government just seems like a big mess and (questioned) do they really do anything. It’s gridlock, but health care is one of those issues that we can't afford not to speak up about, because it affects our lives and not just our own lives but we need to raise our voices to help others as well. The meetings I've had at the different legislative offices and staff have been really incredible.

You realize that there are people like you, like to me, who have relatives or friends who have different conditions. Many of them we talk to and they say “Oh yeah I know someone with psoriasis” or “I know someone with arthritis” and this affects them too. When you make that that connection, that human connection it does make a difference, they remember you and they'll think of you as the legislation comes out.

Psoriasis, Insurers and Step Therapy

Step therapy is one of the first issues that we dealt with here in California, I think we might be a little ahead of other states in this. But step therapy has to do with insurance making you fail certain medications first, before you can try the one that is prescribed for you by your doctor. They call fail first for that reason. It’s usually cheaper medications, it's not always that maybe the deal the insurance provider has with the Pharmaceutical companies or just their cost structure. But, there's a tendency that you have to go through these other medications first.

The problem with that is if you're starting with something that may not be effective for you or maybe that you've been tried in the past but because you changed insurance providers that you're not going to get better on that. And for some conditions like arthritis you may actually end up starting to lose joints or you may lose health permanently and not be able to get that back. If the doctor says “Yeah you do need to start with step one” then that's great, but it's between you and the doctor and what the doctor thinks, and insurance should not get in the middle that.

Yeah I would love to believe that when I'm in the doctor's office and what we talk about inside is what's going to happen for my health, but unfortunately there are other people in the room. They’re hidden, but there is someone who is holding the purse strings with the insurance provider. There may be a pharmacy benefit management company, they may be others who are having a say in whether decisions are made between the doctor and myself will actually be carried out or not.

I’ll give an example of this just this last year I had one drug that was prescribed to me and insurance provider said they're not going to cover it even though it was a psoriasis drug because I was on another psoriasis drug. The whole point for them was that well there's no literature to say that these two medications will work together.

But, when you have a severe condition like myself you need to be creative and it may not be well studied, the ways the combinations, but the doctor needs to have the full toolkit in order to kind of treat. So that was a completely frustrating conversation with insurance. We petition and appealed multiple times but eventually just gave up and got it straight from the manufacturer.

Another time I wanted a phototherapy light unit, a home unit, which is only a few thousand dollars but again they said no. We went through all the appeals process and I end up buying it out of pocket with the help of friends and family. So there are many times that you have to find a way because it's your health, but you don't always get from insurance the coverage that the doctor would like you to have the medications that you need.

Howard’s Advice to People living with Psoriasis

First off, I want people to know that there are others who are going through that themselves. Before when I was with a different insurance provider I never had and these issues. Maybe just their system that if the doctor prescribed it I got it. When I moved out here and I got into a new insurance system I started having to go through pre-authorization and all these issues that I've never had to go through before.

There are others who are going through it too and patient advocacy groups is one way the foundation that we mentioned The National Psoriasis Foundation, they have staff, they have resources to help deal with insurance issues which is one of the biggest issues that they deal with when they work with patients. There are people who are advocating and people who can speak up for that, who can help them navigate this very complex system on how to get their medication, and how to get the help they need to get better.

Addressing the Complexity of the Issues Within the Healthcare System

When I was in Capitol Hill I was talking to our advocacy staff the National Psoriasis Foundation and what I gather from them is that these issues are so complex and that if you try to change one part of the system that affects another part. They're trying to be as careful as possible to not affect the system in a negative way by getting one thing and maybe hurting another area. Areas that we've been advocating, i.e removing step therapy, capping the cost of prescription drugs especially space them out for the year, etc. getting assistance for those.

Those are kinds of issues that can increase access to care and so that patients receive those with chronic illness who need medication. Patients who are getting more research and better medications but they cost a lot, so they're not able to get them, there's a way for them to get those medications. That said, I think we've come a long way cause I remember the days where if you have a preexisting condition you can forget about getting insurance individually, as a family. But I think that we---the system is still struggling to support those with chronic illness because the costs involved and exchanges struggling with costs as well. I don't know if I have the answer for fixing the problem. Suggestion: Try to understand just from a patient advocate perspective, it's seems way beyond me.

Perspective on the Future of Healthcare and the Patient Voice

I'm hopeful that the patient voice gets out more and more. It seems that in the past the doctors, pharmaceuticals companies, that everyone was impacting the system and getting what they need out of it. The patient was just passively receiving whatever was decided for them. Now that we recognize that the patient voice is so important to legislation in how we craft, message and also in the decision making. In the past it was well the doctor knows it all, he's going to prescribe you what you need and you just take it you do it, that's how I grew up.

Now it's a collaborative environment where there's so much information on the internet, there are so many people that we can talk to collaborate with. We're not doctors. I'm not a medical doctor but I know my condition.I know myself and my health better than anyone and so for me to have a voice in that and then also to just be speaking into these other arenas as well, whether it's legislation or in just how we’re to talk to patients. Sometimes we're talked to in the ways in language that is offensive or it's not sensitive, I think these are all areas that the patient voice can be elevated and have more impact.

The Itch To Beat Psoriasis

My columns on Everyday Health, it's called The Itch To Beat Psoriasis and my primary concern is the emotional and spiritual healing. I write a lot about the emotions of living with chronic illness and living with psoriasis. I also have other areas that I write about like relationships or just all those impacts that a disease can have on you that is more than just treating the disease itself. Sometimes I do talk about the latest treatments and I talk about medications. I usually relate it to just the whole person and that's my goal, that there's a holistic healing for the person. Whether there's a cure or that disease goes away or not that we can live a full active life as we would desire to. I think mental health and quality of life are issues that we're talking more and more about because we're not just treating a physical condition, but that physical condition. It's almost like a war that we're fighting and that it never ends.

It’s a day after day battle and so that kind of battle wears on you. It can be frustrating, people with psoriasis deal with chronic itch times, deal with treatments aren't working as well and so that wears on you. There is the fear the unknown. It's an autoimmune condition, inflammation can flare up at any time. All these have been shown to produce depression and anxiety even suicidal ideation and so forth. Some things I do for myself to kind of keep calm or to help with my anxiety is pray. I'm a pastor and so I really believe in kind of that quiet time, to pray and to gain perspective.

Effective Mechanisms to Cope with Psoriasis

If my body is not doing well, if my outer world not doing well, I can do something about my inner world and I could find refuge there. I kind of go deeper within. The worst my condition is, the worst my health is, the deeper I go inside. I like to do other things like exercise, I run three or four times a week and I'm very grateful I don't have arthritis like some of my fellow advocates. I get out there and exercise and play with my kids. I have hobbies, I just started to ground coffee and make espresso. Just little things that kind of keep my mind off work and off of my health that kind of thing. I have a dog to take him out for a walk. Take a bath and just use some oils that will help with my skin and relax me.

Just all kinds of ways that I learn how to cope with it. There are times where I've had to go see a counselor or to talk to a friend just about it. Sometimes I don't want to talk because it's “that again”. I don't want to bother people again because it's--but I still have a chronic condition and so I may be chronically talking to you to get support and to share about it. Having people like my wife---she doesn’t know exactly what it's like to have Psoriasis but she's very empathetic and she's a great listener.

The Role of a Supportive Social Circle

Having support, church network is supportive, they ask me “How's your skin doing?” Sometimes it takes me off guard that people are checking in. It doesn't help me if someone says “Oh I know what it's like, you know I've had this rash you know or had poison ivy or something”. I said well it's not quite the same but just to be able to say “You know what you going through must be it's really difficult and challenging” or “Is there some way I can help out?” These kind of things help when we're feeling overwhelmed. Those are things that help, that help me when I'm struggling through it.

A Call for More Patient Voices on Social Media

It's been great to see more and more people getting involved in blogging and social media and spreading the word and I think that we need even more people. If you've been helped or if you've been supported by those who have gone before who have spoken up, put themselves out there and you feel like you can do that even just a little bit, even if it's not online but just locally. Getting involved in some way it makes a difference. One person makes a difference.

I started out wanting to help one person and I found out that I did help one person when I helped others and that was me. There are so many different ways that when we help others we gain, so get out there and get involved and help that one person out. Check out my blog at Everyday Health, it’s called The Itch To Beat Psoriasis. I also have my own website called psohoward.com, my Twitter is @HChnag316 at and I also have The Itch To Beat Psoriasis page on Facebook.


Empathy in healthcare with Kelsey Crowe, PhD | Founder of Help Each Other Out


"Everything about a medical setting from it's unequal power relations, the racial makeup of who the doctors are, the gender makeup, everything about it suggests that there will be a lack of empathy for your very common patient" Kelsey Crowe, PhD.


Kelsey Crowe, PhD is the Founder of Help Each Other Out, Co-author of There Is No Good Card for This

 

Kelsey Crowe, PhD & Help Each Other Out

I'm Kelsey Crowe and I am the founder of the social venture, Help Each Other Out and I also teach social work. Help Each Other Out is about giving people tools for human connection when it's really difficult to do. Often it's really difficult to do when someone is going through something really difficult that you don't understand. So, if you know someone going through illness, loss, miscarriage, infertility or depression you may not feel that you can fully relate to that experience and back away. Help Each Other Out is about making it easier to lean into somebody's difficult experience and not be afraid to actually find how much joy it gives you to have connection on deeper levels. It actually gives you more energy rather than less. I started this work because I was somebody who shied away from people in a difficult time.

I was often afraid that I would say or do something to make the situation worse. I reached kind of a dead end with that behavior when my friend was diagnosed with breast cancer and I didn't reach out and I could no longer console myself, but that was because I was doing her a favor. I realized it was because I was simply afraid. I had experiences in my own life growing up that was very isolating and filled with a lot of pain and suffering and others didn't reach out to me. I recognized that I was inflicting the same pain of isolation that had been afflicted upon me, I don't think it's because people don't care. I think, in fact, many of us do care. I think we just often don't feel equipped to do something with that care that can support somebody else.

Connecting Empathy tools to the healthcare environment

It's funny, when I first did this work, I didn't expect it to infiltrate the medical community at all. I really was looking for your average person that's looking for a yoga class or an empathy class, and really wanting to take it out of the hands of professionals and put these kinds of skills into everyday skills like we have around how to eat at the dinner table. Just basic kind of regular etiquette practice. I started getting more calls from medical providers about doing my empathy bootcamps with them and I recognize that what is so valuable in that community are two things;

  1. The very simple practical tips I give around communication that doesn't dismiss somebody else's experience that honors somebody else's experience, makes them feel respected, but doesn't have to add a whole lot of time to your encounter that many, as you know, medical professionals do not have. So how can we help people feel seen in their condition? By just the way we have presence with them, and not necessarily give them one more hour of our usual to do's business that we do by the computer. I guess this kind of practical approaches has appealed to medical providers.

  2. Also, I talk a lot about how, what we can be, who we are and what we can do. How to help us see that as being so full and complete, and ultimately enough. I think it's in our striving to be perfect, that we wind up layering on a level of stress to connection that makes us resistant. So my goal in the medical community is that doctors feel empowered as human beings to be who they are and to offer their best self, but to not expect to be everybody to all things. Because, when we go that route of trying to please everybody all the time that's when we get to the burnout and fatigue, the resentment and the cynicism. So that is my goal, to help medical professionals really recognize who they are as natural empaths, identify ways to be that full self and to feel like it's a joyous thing.

Jeopardizing Empathy in the provider patient relationship

I think we jeopardize it when we blame patients for their situation, which on the one hand can easily happen because we all have our traits that make us blameworthy. That can bring us into the hospital. I think we also need to see our patients for who they are, which are people with families or people without family, people with failed dreams and with dreams. People who bring a whole host of fears, denial, worry, and to not wall ourselves off from those because they get in the way of doing the medical work and in fact somehow figure out how to work with these aspects of human beings. That is part of the work, I think we'll all be so much better at it.

Social Determinants of Health & Empathy

All Studies, on empathy have shown that people in power have less empathy for people not in power. That people who are more powerless tend to have more empathy for others because they've had to put themselves in the shoes of somebody else to sort of navigate and understand their treatment. Everything about a medical setting from it's unequal power relations, the racial makeup of who the doctors are, the gender makeup, everything about it suggests that there will be a lack of empathy for your very common patient. Even the research studies who's being studied are we studying different populations and genders for different impacts of drugs and on and on and treatment outcomes. So it's, it's inherently bias. And then also who comes into the system because of lack of access to preventive care.

Then the way that those patients are judged, "you've let this tooth decay this far. Why didn't you go for regular checkups? Do you not care about yourself ?". Lack of information that patients have about various medications and their side effects. Not everyone is easily going to turn to Google and look up web med, or have friends that they can talk to or to get referrals for the best practitioner. The networks that people move in and sort of the professionals within their social circle and family circle that they have access to. It's just so different. That really allows you to prepare for your calls and to field your providers. There's so much room for disparity, and it's a tremendous ask of doctors and nurses in there wanting counter to try to overcome that huge societal weight of disparities.

The Feel and look of empathy for the everyday patient

I think for a patient empathy feels like someone understanding your frustration form the minute you get into the door with how cold the reception area is. How uncomfortable the seats are, to how anxious you are about waiting and not understanding why you're there for two, three, or four hours. To getting into the doctor's office and not waiting in your gown for an hour, for shivering. To meeting your doctor and not have them immediately turned to their computer and start typing in notes. To having your doctor ask, how are you feeling about this today? And hearing your experience with what you're going through.

To then asking what do you already believe you know about this condition? And respecting the knowledge, what you believe to be knowledge that you bring to it, and to have open ended questions about any concerns that they have with coming home or with anyone in their community and genuinely wanting to know not just ticking it off of a form.And then the larger system in terms of its practice of sharing medical records and communication between medical providers that they try to facilitate a lot of communication around some basic data so that the patient doesn't have to keep repeating over and over again, some of their basic information, because it's really dehumanizing.

Deploying empathy towards vulnerable populations in the healthcare setting

So many vulnerable populations, let's say call them vulnerable at the same time, sometimes act the toughest and it's because they're afraid to be vulnerable. They don't want to be victimized, they don't want to be disrespected. So they may not share all of their stuff, all of their worries. They may not actually and often do not have a lot of trust in their medical team.

I think that doctors need to build rapport with their patient that's based on trust. And Trust always, always begins with an interest in who somebody else is. If you don't have that interest, then you're just another doctor who doesn't care about me. So you, you have your own stereotype as a medical professional to overcome. Even if it's, Oh, I noticed your hair is different today. Anything special going on? Any way to sort of acknowledge or shared humanity.

There's No Good Card For This

What inspired me to write the book; There Is No Good Card For This is getting the hands of as many people as possible, some basic tools and practices that help people connect to others. It was rooted in a firm belief that, we so much lack compassion as we lock confidence in how to be compassionate. So the book provides real guidelines for what empathy and compassion can look like and feel like. And also illustrate ways in which what we see as benign comments can actually seem very hurtful to somebody else. So it kind of illuminates what caring connection looks like. It doesn't try to tell somebody to be somebody who they aren't by any means. It just helps round off the rough edges a little and I'm really pleased that It's gotten into a few people's hands for sure and may it get into more.

Impacting Societal change through empathy

What I do is teach and help others teach each other some basic tips for having more effective communication and connection. My hope would be that people have the conversations that they want to have because they've learned these things. They don't want to have dead end conversations, where you don't get all the health data that you need to make your medical decisions. And you don't get all the feelings updates from your spouse or your family member that you need to be a good spouse, good parent, or good sibling. There are ways that we can practice talking to each other that bring out more and make our relationships really worth while. My hope would be that people learn these simple tools, and they have access to them, however is best for them whether it's in a book ,workshop or online. 

Empathy Legacy

I would like to see empathy education  in every classroom, the way that you see sex education. I'd like to see it in every wellness studio in the way you would see yoga. I'd like to see it as just part of adulting, that we take relational health based classes. That would be my legacy that, that happened. That somebody would just join that course as freely as they would join any other course.