Denise Williams -My Twin Sons

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About ten years ago, Denise Williams found herself trying to navigate the intersection of mental illness and addiction with her twin sons, Ryan and Matt. 

She wishes she had been better prepared.

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I have twin sons, Ryan and Matt, and a daughter, Katie. She's two years younger than the boys. And both of the boys, they’re twins, they died of a heroin overdose.

From the beginning, I thought I was a very lucky person. My kids flourished. They did well in school. They were active in all the community things. The boys played sports. My daughter did the cheerleading.

I thought that we were the white picket fence family, that there was nothing wrong.

And when Matt was in high school, just before graduating, I got a letter or a note sent home from his English teacher. She had given them an assignment to write a speech to their classmates what they would wish for them for the future.

And Matt's was totally morbid.

It talked about suicide. It talked about bullying. It talked about the injustices in the world.

He did not want to go on living if, if this is what life was. I thought it was a joke. I thought it was his senior prank -- that someone had put him up to it because of this wasn't Matt. Matt was my happy-go-lucky. He was the people-pleasing child. Out of the three that I had, he was the easiest to get along with, always looked for approval and wanted to please people. And he never had anything bad to say about anyone. And here he's talking about suicide? It wasn't a prank. It was his words. He wrote it. He started feeling like that in middle school.

And it's like, "Well, why didn't you tell me that this is how you felt?"

And he said, “Because I didn't want to be like grandma.”

My mother-in-law lived with us. She suffered from severe mental health issues. And not understanding what mental health was, I thought it was a weakness. And, um, if she would just get up, out of bed, take her medicine, take a shower, eat a good breakfast, she would be good. It was her choice to lay around and feel sorry for herself.

Often there were jokes around the household that,"There's grandma, she's up to her old tricks, you know, just trying to get attention."

Matt flat out said,"I didn't want to be like grandma. So I handled it."

"Well, what did you do to handle it?"

And he goes, "You know, I handled it. Today I'm feeling a lot better."

In my mind I was like, Okay, well, I was right. He got out of bed. He pushed himself forward. And it's just, like I said, mental health is a weak disease that, you know, he overcame it.

I did find out the first time he went into rehab, what he meant by that.

He meant I had a bottle of liquor hidden underneath my bed. And every night I would drink. Every day before I went to school, I would drink, and it would take away my anxiety, my depression, and it was my coping. You could have blown me over with a feather. I, I just -- what, where was I? Why didn't I notice all these signs? I mean, he just -- he hid it so incredibly well.

Nobody ever would have guessed that he was depressed, and suffered from anxiety disorder, and bipolar disorder.

He said he didn't want anybody to know because that was his problem. And he didn't want to be made fun of. And he didn't want to be like grandma.

It increased after high school. But after high school he did go to college in the evening. He worked full time. And he had a girlfriend that went to Towson. And he would spend most of his weekends out there with her.

And I thought everything's great.

When Matt was around 20 years old, he just had a big turnaround in his personality. He quit college. He broke up with the girlfriend. No one knew that he was unhappy. And he became this person that he was staying out all night. Coming in totally wasted, disrupting the household, dropping things, walking into walls.

It finally got to the point that, you know, "If you can't live under my roof, doing my rules, you're going to have to go.”

And Matt welcomed that conversation because he already had a place set up.

It was quite a bit of a party house. But I thought, Hey, now he's got to pay rent. He's going to have to grow up.

Well, that didn't happen. The partying increased.

January 17th of 2007, 4:15 in the morning, I get a phone call from University of Maryland Shock Trauma. Matt had been in a serious car accident and we needed to come quickly.

You know, he had some pretty serious injuries to his arm, but he would survive. And the state police were there. And they said they would be charging Matt with driving under the influence.

And when the doctor came out, he said, “The good news is, he's in recovery right now. The bad news is he's got a long road to recovery.” He was in the hospital for a week. He broke, chipped, dislocated, and crushed every bone in his left arm. He broke his right leg. He had lacerations all over his body, a couple broken ribs, a concussion. When I went to go pick him to bring them home, they had just taken them off of the morphine drip and they had started him on opiates.

And he was not doing well. He started vomiting.

The vomiting continued. He was supposed to take the opiates, the Percocets and the Oxy's, every four hours. And every four hours Matt would be vomiting.

I called back up to the hospital,and I was just told, “Matt's got to get used to it. He's got a long road to recovery. He's got to just keep taking the opiates. There is nothing else that we can give him. And eventually he'll get used to it.”

Well, he did. He said it was less than two months after starting the opiates he was waiting for that for 4-hour interim to come so he could take another pill.

He ultimately needed seven operations, four days a week of intense occupational and physical therapy.

They did wean him down from the Oxy's but he was given Percocets, ninety at a time.

I didn't think this was going to be a problem because this wasn't Matt's drug of choice. It was pot, cocaine and alcohol. Pills? He was vomiting, you know. He isn't going to get addicted to it. And he kept the fact that he was looking forward to that every four-hour timeframe to himself.

As he got more mobile, he started buying them on the street in between. But eventually he couldn't afford it. He wasn't working. He, you know, he had a girlfriend that was helping them buy things, and he was coming up with lame excuses to borrow money from us, and we never, ever dreamt it was to buy a pill.

He said by the one-year anniversary of his car accident, he had to switch to heroin because he could not afford to keep up his opiate habit on the street.

That happened when he was 21. It wasn't until he was 25 before we actually got him to commit to a rehab. And you know, it's just like anyone else suffering from the disease of addiction -- things were coming up missing. Electronics. My husband had a welding business so there was a lot of tools that were very valuable. They were always coming up missing.

We didn't call the police on him. We tried to handle this on her own, buy it back from the pawn shop, and threatened Matt, You got to stop it.

We finally got Matt to commit to a rehab right around his 25th birthday, which was 2012. But he was there for two days and I got a phone call from the psychiatrist and the caseworker. They needed a meeting with me.

Matt greeted us at the door, and he’s like, “Happy birthday to me!” because it was actually was there his 25th birthday.

“Happy Birthday to me! It's the first time since I was 14 that I've been sober on my birthday.”

And it's like, “What are you talking about? What about when you were 15, 16, 17?”

He said, “No. I wasn't.”

And then we went to meet with the psychiatrist and the caseworker. She said, “He has so much pain. Matt will never be sober unless he handles the demon beyond the addiction, which is his mental health.” For probably an hour, he just sat there and bled his heart. The things that bothered him -- I mean it went back to early childhood. The counselor would say, “Remember, this has been festering in, in him. It snowballed and got bigger and bigger, and he was never treated for any type of mental health.”

But then there were other things. His father is an alcoholic. And he said, “I don't think my father knew my name until I was old enough to sit on a barstool next to him. He didn't go to my concerts. And if he did, he came in at the last five minutes, and he was drunk. And that hurt.”

I get it. I get it.

They gave me a list of mental health treatments, and she says, “Matt's insurance only pays for 14 days, but I think because of the mental health, I can get an extended time. But you have to have him set up with a psychiatrist before we leave. That is the only way he will remain sober.”

Well, as it turned out, Matt's insurance, they would pay for if I paid out of pocket. We had just paid $1,500 for him to walk in the door, and then after that it was going to be $65 a day, excluding any expenses. And I, I just did the math. How can we afford this? You know, we're middle class. We struggle!

And so I had to bring Matt home, prior to getting a psychiatrist. And I hate to bring money up because his life is way more valuable than that, but these are the walls that people face for healthcare.
In 2014, Matt finally did get clean and he was seeing the psychiatrist and, and everything seemed to be going well.

Ryan thought he -- it's time for him to follow up because he had fallen into the same path from depression, from actually having adult issues, finances and relationship problems.

It was in December. Ryan wanted to wait until after Christmas because he had a young son and he didn't want to be away from home. So just like he promised, two days after Christmas he went and got his own Maryland state insurance, then went to a treatment center. Well, when he got to the treatment center, they said, "We don't take walk-ins.”

So he made an appointment, went back the following week.

They told him, "You don't have that insurance card in your hand," even though he was preapproved, and state --Maryland state insurance does work that way -- that you can be preapproved. And there is a website that any treatment center can go on and see who is preapproved. And we were not aware of this at that time.

They told him no. They told him to come back when he physically had the insurance card in hand.

Ryan died 25 days later. The insurance card came the day of his funeral.

But Matt held everything in. And he told me later he didn't deserve to cry because he was the one that introduced Ryan to the heroin after being turned down from treatment and Ryan needed something stronger than the pills he was getting on the street.

Matt pretended for two years, and right after the anniversary of Ryan's death, because it was in January, Matt started becoming more and more verbal that things weren't right. And he had a full blown-out relapse.

At the hospital, they looked into his past history, and they didn't call this the normal relapse. They said that he's never dealt with the grief. He's never dealt with the guilt. And that he was doing what Matt knows how to do -- self medicate in order to resolve his problems. And it was treated like that. He never went into a drug treatment program even though all the mental health facilities overlapped with that. The drugs was the secondary. The most important thing was the mental health -- getting Matt to cope with Ryan's death, and the grief and the guilt.

It was like everybody was pulling together to help Matt.

In February of this year, he wasn't doing good, and he did not want to go back into inpatient because every time he complained that the demons with Ryan were getting greater, and more vivid, and keeping him awake all night long, all's they did was increase his antidepressants. And he said he could actually exist in a world doing illegal drugs and still function normally. But the antidepressants were so -- at such a high volume, he slurred his words. He was falling over. He was Zombie-like.

And, and he was crying.

And he said, “Mom, I can't exist being a drug addict, and I can't exist being highly medicated. I am unfixable. Once Ryan died, that was it for me. I've always envied where he went because he's at peace. I hate that I'm doing this to you but you have to know it's time to let me go. I have to do what I have to do.”

And I begged him. And he said, “No! If they come here, I'm over 18. You know, if I'm not hurting anyone, all's I have to say is I'm not going into treatment. And I won't. And they have to leave.”

And -- which is true. So I said, "Well, will you go back to the hospital?"

He said, "Sure on Monday," but it wasn't a very convincing ‘sure on Monday.’

The next day he intentionally overdosed.

Matt went into the addiction with mental health issues. With Ryan, he did not have them and I do think Ryan could have recovered.

But I think Matt would have always lived a very troubled life. I saw my mother-in-law. She died with this disease.

It ruled Matt. It was Matt's demon beyond the addiction.

And, you don't want to lose your kids.

I'm 62 years old. I have four grandsons that are beautiful little boys-- and they, they put a smile on my face.

But then come like Christmas morning, it's obvious the ones who are missing.

I'm Denise Williams and this is my story.

Dr. Faye Jamali -Doctor in Recovery

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Photo courtesy Faye Jamali

In 2007, Dr. Faye Jamali broke her wrist.  What happened in the next few months jeopardized her career as an anesthesiologist and made her understand pain in a new way.

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I don’t want to say it’s unusual but for me it was unusual -- because never in a million years did I think I would ever find myself addicted to opioids.

I had never had issues with heaving drinking, using drugs. I even graduated Berkeley without even trying pot.

It was scary how much raw talent I had for being an addict. For someone who had had no history of it, I showed great skill.

At age 40, this is after I’d been an anesthesiologist for almost 15 years, I broke my wrist at a birthday party for my children. This was back in 2007. Had a couple of surgeries. Had some pain. The surgeon, who was actually a friend,, prescribed me a big bottle of pain pills. And back then it was not unusual to do that. We were taught in medical school, in residency, and even in my clinical work place, that we had to treat pain very aggressively, and that if patients were being treated for surgical pain, the chance of addiction was minimal. That was what we were taught. So to me, it wasn’t unusual that he prescribed me a whole bunch and he also said, “I don’t want you to have to call for a refill. Here you go.”

And I took the pills as directed -- every three to four hours when I had pain. Funny thing happened. I noticed that when I had those pain pills in my body, things didn’t bother me as much. I was just less stressed out about everything.

At that time, I had two small children, a two-year old and a five -year old. Life was pretty stressful. I was a full-time anesthesiologist. My husband was a full-time surgeon. Hectic life. But I found out that hey, if I took one of these Vicodin pills, it just smoothed the edges. I just felt like Oh, this is kind of cool – and it’s prescribed!

So I just started slowly taking things once in a while when I was stressed out. But it muddied the water for me.

I also have a long history of very severe migraines that I had gotten all kinds of treatments for. Botox injections in my scalp. I would occasionally find myself in the ER having injection of a narcotic. I was at work when I had a very bad migraine. It was towards the end of my shift. And at the end of the shift as an anesthesiologist, whatever leftover narcotics we have from the cases we’ve done, we waste them. As I was in the bathroom just dealing with this really bad migraine at the end of my shift, I thought, Oh my god, I have this narcotic. This is the exact same medicine they’re going to give me in the ER. And I don’t have to wait. And I don’t have to do anything. And I’m a physician. And I can inject. Let me just do it!

I did it. The headache went away. But I felt so guilty. I felt like I had just crossed a line that should never, ever be crossed.

The next day I got a migraine again. I tended to get them during my period. And I thought this time, Oh, I know exactly what to do. I went and injected myself again. This time though, I felt a rush of euphoria, not just pain relief. It was a euphoria that made me stop, and think, and be angry at myself for having had access to this amazing drug all these years and I never used it!? I mean, what kind of idiot was I?

Over the next three months, I just was chasing that euphoric feeling. And within a three-month period, I had increased the dosage of medications I was taking by close to tenfold. I was terrified. I kept thinking, Well, this is wrong but no, no, no, I’ll stop. It’s just really stressful right now. I’ll stop.

But something would trigger it, and I would just like I just want to feel good again. And I would find myself doing it and feeling worse afterwards because no matter how much I tried, I couldn’t quite stop myself. But I kept thinking, Look, I’m a smart person. I’m a doctor. I have good will power. I can beat this.

Nobody knew. Nobody. No, I did not tell my husband about this. He had no idea. I never used when people were around. It was always in private. And I would use on the day that I wasn’t working. Children were at daycare or at school. I hid it pretty well. I also didn’t know how to ask for help. I felt so ashamed. I kept telling myself, But I can’t be an addict. I’m a doctor. I’m a soccer mom. This is not addiction, this is just some phase.

But I -- I was scared. Anesthesiologists died from overdose but I never thought that that would be me. And I was afraid that if I overdosed and died, I would leave two small children without a mother.

So I had this brilliant idea one day. I would inject into my arms. So I put my daughter’s name on my arm where the vein was, and my son’s name on the other arm where I used. And I told myself, Just think of it, next time you’re injecting there, just tell yourself you’re injecting into their eyeballs. You would never do that, would you? But the craving would hit and I would rip that Band aid off, and I would inject, and I would feel a thousand times worse, because what mother does this? What mother would do this?

The worse I felt about myself, the more I needed relief. And the more I did it, the further down I would get. I would go two or three, four, five days without using and I would see the light. Like, okay, I am crawling out of this crevice, and then fall back down again further.

I had a fight with my husband one night, and I drove to the hospital, went straight into the recovery room. It was like 8 o’clock at night. Said hi to the recovery room nurses, went to the narcotic machine, just picked a random name, a patient’s name, and checked out narcotics. Went into the bathroom and injected. And I woke up, maybe a couple of hours later. I still had a needle in my arm. There was blood. I had vomited. I had urinated on myself. I was horrified. Horrified at my husband for having made me do this. I was angry at him. This is the depth of the change that happens in your brain. The addiction in you does not want you to call it addiction because it’s an existential threat to its existence.

My workplace – they called me one day. They said, “We need to talk to you.” I walked into a conference room. There was like ten people sitting around this large conference table, and they just had all these records of medications that I had checked out that had nothing to do with surgery or the operating room, just a random patient, a patient who had actually died two days earlier who was still on the list and I had checked out a medicine under his name.

I just didn’t even have the presence of mind to say anything. I just said, “I don’t know. I don’t know.” I just didn’t know. It was shocking. They said, “Turn in your badge. You’re under investigation. Until the investigation is done, you’re on suspension.”

And I remember walking out of the hospital wondering, Now what? Oh my God.

And that evening actually we had a marriage counseling session because our marriage wasn’t doing so well at that time. We went home, put the kids to bed. And after things were quiet, my husband said, “Faye, do you want to tell me something?”

And I just looked at him. I thought, Okay, this is it. This is the lowest point in my life. This is how it just completely falls apart. I didn’t even say anything. All I did is I rolled up my sleeves – I used to wear long sleeves all the time -- I rolled up my sleeves, just showed him my arms. And then what he did, was he just picked me up, hugged me and said, “Sweetie, why didn’t you tell me? We’ll get you help.”

And I have never loved him more. Because to be that low, and to have someone offer you help -- it is the world to you.

And also that moment taught me no matter how hard the situation is, the truth is actually easier.

So the next day I called up my hospital and I told them. And I saw this physician who is a psychiatrist at my hospital who is an addiction medicine specialist actually. He had treated me years ago for depression, post-partum depression, so he knew me very well. He’s my angel. He said, “Faye, it’s going to be a long, rough journey, but we’ll take you through it. We’ll walk you through it.”

And I’ll never forget the first day I showed up at the recovery center. I had dressed nicely, wearing a nice pearly necklace, and I sat down and this guy next to me said, “So, hey, what are you here for? Alcohol?” And I’m like, “No, I shoot up drugs.” And he was shocked. Like I didn’t fit the profile of someone who injects. But that’s who I was.

I was extremely fortunate. I had a job where they gave me the opportunity to take a year off. I had insurance that would pay for my recovery program. I was in a physicians’ support group. I had therapy. I had group therapy. I went to AA – I just felt more comfortable in AA versus NA – but just like a 12-step program. I really immersed myself into recovery.

But at the end of that one year, the hospital said, “You can either come back to the job you had before, as an anesthesiologist, or you need to sever your ties with this hospital.” And I was terrified. I didn’t know whether I could go back to being around narcotics. So we came up with a plan for me to come back slowly, be monitored. For the first three months there was another physician with me on every case. I took naltrexone, an opiate blocker. I told people in my group, my anesthesia group, of what had happened. I wanted them to be part of my safety net so that if something looked off, that they would be there and notice it. So we had a big program set up and I was able to return to work.

Most states, except for three, have a physician health program. If a physician has problems with substance abuse, they can be referred to this program, and as long as they abide by all the program rules, like going to meetings, having therapy, urine testing – as long as that is going on, the medical board doesn’t plaster their name on the internet, as long as they are in recovery.

Unfortunately in my situation, California is one of only three states that to this day, does not have a physician health program. So what happens is that if you have a problem with substance abuse, the medical board reviews you. So the medical board took two years before they got to my case – not because they are lazy, because they are backlogged. I was already back at work practicing for a year before the medical board came down on me and said you are under probation for five years. During that time I had to get tested four times a week. I had to take an ethics course because according to them, it’s an ethical failing. I had to take lots of continuing medical education in addiction medicine which was great.

I don’t think being a doctor is a right – it’s a privilege. I was willing to do whatever to do this. But any patient who wanted to could go on-line, put in my name, Dr. Faye Jamali, and what does it say? It doesn’t say I’m in recovery. It just says that I am this addict. That’s hard as a physician. And I don’t think it does the public any good because now physicians go underground if they have a problem.

Who wants their problems on the internet being broadcast? Physicians in recovery actually do much better long-term, 80% recovery rate vs. the general population. Also we have access to good insurance. We have the means to get the recovery we need. The general population, unfortunately, doesn’t.

But in 2015, I was able to finish my probation. During this time of recovery, it’s not like life was peachy. Pain happens. What I learned from recovery were all these tools to deal with life and pain that is inevitable in life. I think prior to that I had wanted to become numb to the pain. I think as a culture we want to do that. We want to numb ourselves. It’s almost makes things worse because rather than actually dealing with the problem, we never address the problem because we just numb the pain. And pretend it’s not there.

I will forever be an addict in recovery. There is no cure for this disease. Your brain has changed. It is not a moral or ethical failing on anyone’s part. And just like a disease we need to have a treatment plan. And recovery is a treatment plan and we should support that, and there should be money toward that.

You know, I always think of this thing when someone is trying to quit smoking, everybody is rooting for them. They’re like, Good job! You can do it! Why can’t we treat it like that? Why can’t we say, Good job! You can’t do it! and be the support that they need. And that’s what I want to be.

We need to have good policies in place, have people buy into it, to realize that this could happen to anybody. Hey, if it can happen to a 40-year old woman physician with no history of this, it can happen to anybody. And, you know, it is happening to everybody.

There is something going on in the brain, a neurochemical disease. It is no different that any kind of other chronic disease. And we have to approach it as a disease, take the stigma away from it, and that way with facts and science, we might have a chance.

My name is Dr.Faye Jamali and this is my story.

Lisa Curtin -My Mom Was Addicted

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In the late 1990s, Lisa Curtin's mother read about a new drug called Oxycontin, and then nothing was ever the same for Lisa or her family.

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All through our years of growing up, my brother and myself, my mother struggled with alcohol before she got addicted to drugs.

My earliest memory is when I was about 6 years old, and my brother who’s eighteen months younger than me, was four and a half, you know, she was on a bender, just drinking like crazy, my father was traveling. She told my brother and I to pack our clothes. We were going to have to live in an orphanage because my brother and I were fighting with one another and she couldn’t handle it.

She literally made us go pack our clothes. A stranger came to the house to pick us up. She put us in a car with the stranger and the stranger took us to a grocery store parking lot. And in the grocery store parking lot, he just turned to us and said, “You know, you just have to start listening to your mom. She’s just sort of at her wits’ end, and if you don’t listen to your mom then you know, you’re not going to be able to live there anymore.” He brought us back to our house then.

And I don’t for one minute doubt that my mother loved myself and my brother. I don’t doubt that at all. But I realize that you can’t compete against a bottle of vodka. You cannot compete against whisky. And you can’t compete against prescription drugs. It just doesn’t happen.

When she was around 50, she diagnosed herself and convinced a couple of doctors at the time that she had fibromyalgia. This was her ticket to freedom. Very difficult to diagnose. She was smart enough to figure out ways to pretend that different pain points in her body when touched would be sensitive to that touch, and she then started to get prescription drugs.

It started with Vicodin, at first. Because sometimes she would not eat, physical things would actually happen, like she would actually trip.

One time she, you know, broke a toe on her foot. My mother, my daughter, Amber, and I were going on a trip together on a plane ride. She was on a crutch and her toe was casted and we get to Alabama, and my mother forgot her medication at home.

So, when we were in the hotel room, she unwrapped her toe, reinjured it which then caused us to spend a good portion of the time in the emergency room so that she could have another x-ray on her foot and get pain medication. Now she’s got you know, a supply at home and now she’s got a supply while we were on vacation so when she gets home she has a great party ahead of her because she’s got all this medicine.

The things that she did, the way she sort of manipulated situations to be able to get what she needed to get is no different that someone who is on a corner, you know, looking for a way to be able to get a quick fix.

All through my mother’s fifties, she struggled with some sort of illness, one way or another, that was causing her to get prescription medication. And then my father had his stroke. So the year would have late ‘96. My mother met a doctor – and I’m getting chills just thinking about it right now – who turned her on to Oxycontin and that’s when it really just started to go down.

At first, it seemed to be like good for her, in that she didn’t seem to be in pain and she had a better frame of mind, and she was gentler toward my dad and more sympathetic toward my father’s situation. But after awhile, she would just track when she would take her pills, and I have 3x5 cards of her handwriting of how she was like monitoring when she was taking the prescription medication, because I think she was trying to convince herself that she wasn’t actually taking more than she should. But she was. And it was an endless supply.

This also started a trend where she would overdose on a fairly regular basis. At least five times which usually was she took too much of her Oxycontin, she didn’t eat. Once in awhile she would mix it with alcohol. She’d go to the emergency room. I’d get a call and I’d get there, and I’d say to the doctor, or the emergency room physician, you know, “Test her blood alcohol count or test her for, you know, morphine or whatever. Just test her for something because I’m sure that she’s overdosed. It’s not that she just fell or that she’s disoriented.” And she would deny it, you know, she was always in denial about this. Constantly in denial.

Sure enough, you know, the next day they’d come back with test results and her blood alcohol count was really high or the presence of opioids in her system was really high. But still the doctor continued to prescribe them to her.

There was a time when my mother overdosed. I walk into the emergency room. I could hear my mother’s voice asking for morphine, that she was in pain, I want this, I want this, I want this drip. And they ended up giving her the drip. But then I went back to her apartment. I found thirty–seven prescription bottles of medication from four different doctors. Most of them had like one or two pills in them. But all either for Vicodin or Oxycontin.

And I brought all that medication to the hospital. And when I saw her doctor, I showed him. =I go, “This is what you’re dealing with. =She’s going between Illinois and Wisconsin. She’s going across the state borders to get medication.” And the doctor who I think was the worst influence in her life, you know, he just seemed to ignore it. He didn’t think it was like that big of a deal.

All I think about from the time I was 6 years old and I’m 58 years old now, that’s a long time, that’s 52 years of trying to figure out how the hell to take care of a woman who doesn’t know how to take care of herself, or anyone else, and refuses to get help.

The memory of all this stuff that went on with her still lives with me every single day. Every single day.

My mother passed away in 2006. It was actually my grandsons’ second birthday. I had gone to the doctor with her two weeks prior. And I told the doctor once again that my mother’s best day of her month is when she comes to see you, to get her prescription refilled. The doctor said to me, “Well, you know, your mom’s in pain. And she – you know, I don’t think this is an addiction. You know, this isn’t a drug that’s addicting.”

And I said, “She doesn’t even eat. She’s either falling in the bathroom or she’s falling, you know, in the living room or whatever. When they take her to the hospital you end up coming there, and she gets what she needs. So she’s figured out a way to get a fix until she can get the next prescription filled. This is a pattern and you’re not helping at all. I’m like powerless to do anything about it.”

The doctor still filled her prescription. And the twins’ second birthday was coming up. nd so she was going to come with us, and I was really excited that week because I thought, Ok, that would be great. You know, she’s going to come. This is going to be wonderful for her. And she called and said that she wasn’t able to make it. She wasn’t feeling very well.

I just had this weird feeling all day long. I tried calling her several times. I couldn’t reach her. She did end up calling me back, and she said, "I just want to lay around anyways, I don’t feel good." And I said, "Well, okay, we’ll talk on Monday."

So Monday came and Monday night came, and I still -- I hadn’t heard from her and I kept calling her. Finally, I called the apartment building that she was living in and I asked them to do a ‘check well-being’ on her.

She was gone. She was gone.

And I’m like Okay. I was at work and it didn’t really even sink in, you know. In a way it was sort of like, She’s gone so it’s like relief. But I know that sounds terrible.

But on the other hand it was like Oh my God, my mom’s gone and I never could fix her. I could never get her to understand herself. I couldn’t even get her to understand me. She didn’t even get that.

Nobody has ever once been on my sidelines except for my kids saying, You can do it! You can move forward. You know, we’ve got your back. And I wanted my mom to do that, and she couldn’t. And then I couldn’t save her either.

And so, you know, on the day when I’m having a good time with my twins’ birthday party, when they’re two, she’s laying in her bed, dying.

We got the autopsy results, and she died of morphine toxicity. The last year of her life was all about going to the doctor. You know, I took my pill this morning and so, I feel better and you know, I’ll take another one a little bit later today.

That’s all it was. Every single thing was about that particular pill which made her life so much better than everybody and everything else around her.

If I was able to sit in the front of the doctor today, I would like to say to him: If family members are involved in the patient’s life, and they’re telling you the best day in that patient’s life is the day they get to come and see you because they know they’re going to get their prescription refilled, and how this is destroying, actually, the entire person that’s sitting in front of you, that is your patient -- it would be really great if you could just listen.

*And I don’t know if the motivation for writing the prescription is related to great incentives for doctors. I don’t know if that’s the reason.

I don’t know if you really felt sympathetic to my mother because you thought that she really was in pain. However you really only saw her for like seven minutes a month, so you didn’t really know her.

And maybe it was just the time, late 90’s, early 2000’s. Maybe enough wasn’t known. I don’t know. Although I find that hard to believe because it’s highly addictive even though it was toted originally not to be.

It would just have been nice if you just would have listened.*

My name is Lisa Curtin and this is my story.

Ted Stout -The Doctors Who Failed Me

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If Ted Stout had continued to follow the advice of his doctor, he might not be alive today.  The prescribed opioids reduced the physical pain he suffered from Postherpetic Neuralgia -- until they made him much sicker. Then he took matters into his own hands.

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I was 38 years old and I thought I had a sinus infection, up towards the forehead, above my eye, behind my eye. The pain in my trigeminal nerve was intense. Eventually I went to the doctor, and he said, “Look, you’ve got a rash under your hairline. You have shingles. It should last about a week and you should be fine after that.”

Well, I wasn’t fine after that, and it just lingered. I went back and he said,“Well, we’ve come to the conclusion that you have post herpetic neuralgia.” The nerve was damaged and would never fix, that the only thing to do at this point was pain control.

Well, I didn’t quite trust this doctor and found a doctor who was a very well respected doctor in the Fredericksburg area. Right off the bat, he prescribed opiates. And I saw some pretty immediate help with the pain. But it kept coming back. And it kept getting worse. The doctor just kept throwing more medicine at me. And he said, “Well, if you feel any pain, if you feel a tingle, take the drug. You want to nip it. The more you allow pain to happen, the worse off you will be.”

Ultimately I was on something called morphine sulfate ER, and it was a time-release morphine. I came to find out that the stronger medications would take the pain down a little bit. For a couple of hours, it was like oh, whew, relief. And then after about two hours, it started to creep back in. And I kind of would joke that the pain was made at me because I was trying to get rid of it and it was coming back with a vengeance.

Frankly, I never got a buzz off of that. I didn’t even know I was taking it. ut I sure knew if I didn’t take it. And it just felt like I had little boa constrictors wrapped around my bones, my tendons – there was no comfort. It probably took a couple of times before I put two and two together, and I started feeling that it was time to get off of these things. If my body was this dependent on this drug that I didn’t even feel! So I went to the doctor and I said, “I think I should start to get off of this stuff.” And he was adamant that I don’t. He said, “You’ve come this far. It took us this long to get to this point, why would you want to mess this up?”

The doctors who you assume were doing their best – they are humans too. They will take the easy way out when they can. Plus they want to give relief. You know, I was in pain. “Here, take a pill, you won’t be in pain anymore.” I said, “Okay, but I still feel that we should start trying to get me off of this.”

So in 2014, I had a TIA stroke. It was scary. I was 49 years old, lying in a hospital bed, and I said to myself, “You’ve got to make a change. You have to take control.” This had been going on for about 13 years. I decided that I would get off of all medications, every single bit. And I found a facility in Virginia. I contacted them, told them what was situation was -- pain from post herpetic neuralgia in my trigeminal nerve -- and I said, “All right, well, I’m sure you can get me off of this stuff but what about the pain that happens afterwards? Because it will be there. The pain will come back and I have to have a pain management program to fall back on.”

They assured me that they did. They said part of you know, getting rid of this addiction was having a very comfortable bed and comfortable surroundings and all these things. OK, great. So I show up there and it’s-- it might as well have been a mattress off of a gurney. It was rubber, or plastic, with an old sheet on it. And I get that that’s how it should be, because when you start getting off of these drugs and it’s just nasty, nasty, nasty. And there were times that I couldn’t even make it to the bathroom in time. I couldn’t do it and I was lying there in my filth.

After three days there, and I’m getting off the morphine, I had not seen a doctor yet. And I was talking to the nurses there, saying, “When does the pain management part kick in? The pain is bad right now. You know, I’m off of this one drug and the pain is so bad, I would say it was a ten.” Now a ten probably is I want to hang myself and die. I really felt that way. I said, “If you don’t let me see a doctor right now, I am driving out of here.”

One of the nurses I called Nurse Ratched. She just kind of told me I was being a baby, and that if I left this facility she would call the sate police because they give – they give you something, I don’t know what it is, to try to help you get off this stuff and that that impairs me. And if I get in my car to drive, she will have me arrested. We’re in the parking lot, yelling at each other. I mean it was – it was awful. I’ve never been treated that way in my life. And I was paying for this, you know.

The fifth day I was there, the head doctor of the whole place called me into his office --beautiful, lavish office -- sat me down, and I’m thinking Great, now I’m going to get the plan. And the plan was to tell me that they had no plan. They talked about it. They monitored me, did some more research into it and found out that they had no plan for me. But I was welcome to stick around for 30 days if I’d like.

I broke down and cried. It was – I get a little…

I felt betrayed. They told me they had something. I put up with crap. I put up with Nurse Ratched. I put up with being an inmate. And now they’re telling me, Oops, I guess we should have looked into it a little more.

I did have Plan B. There is a place in UNC – UNC Chapel Hill Healthcare-- and they have a very well recognized trigeminal neuralgia program there. And, two and a half hours I talked to these people. I felt listened to for the very first time. It was like Hallelujah! They go to the root of the problem. They don’t mask it. They’ll be no drugs given. They told me to try Tylenol and ice. What they did was they gave my body a chance to get strong and knock this thing out.

He suggested that I go see a chiropractor every week and get a massage every month. Change my diet – organic everything. Don’t drink coffee. Don’t drink alcohol. Drink a lot of water. He said fat will help repair the nerve damage. You need good fats like avocado fats to heal your nerve. He said your body wants to be good. What you put into it, what you put on it, is going to affect everything, and if you are predisposed to this condition, every bad thing you do is going to cause you a problem. Every good thing you do will strengthen your body and it will make things so much easier for you, you will be able to do this without drugs.

I believe that the nerve is mostly fixed. It took about a year and half for me to get totally good. And I know that opiates will make it flare up again. And I know that some will say,Wow, that’s great, but I could never do that. I know people who’ve done it and they are happier people for it. Do they still have pain? They do, a little bit. But are they better off for it? Yeah, they are better off without the opiates. Opiates should be a temporary thing, not for chronic pain. It will kill you. Or you might kill yourself. I came close because it just seemed like there was no way out of this.

I’m a very private person but if my story can help one person realize the dangers of extended opiate use, it’s well worth being uncomfortable with my story being out there in this world. If you hear this, know that you can do this. If I can do it, you can do it. And please try. Give it at least a try. You won’t be sorry.

I’m Ted Stout and this is my story.

Andy Viner Seiler -Surviving Withdrawal

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Andy Viner Seiler was prescribed opioids by his doctor to deal with pain.  He was hooked and his doctor wasn't helpful.

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Withdrawal is the worst.

I mean, here I have an illness and the pain is just unbelievable. And then I find getting off opioids is worse than that.

It all began in 2004. I got hit with something called Ramsey Hunt Syndrome. I call it the evil cousin of shingles. It’s the same virus. Basically, all you have to have done to get it is to have had chicken pox when you were a kid. But it’s rare enough that nobody’s doctor ever diagnoses it correctly. That’s what happened to me. So I got sicker and I got sicker. This thing attacks the nerves in your face. It looks like Bell’s palsy. It feels like – oh my God, it’s nerve damage. It’s insane pain.

Now the doctor, the same doctor who misdiagnosed me, gave me a whole mess of meds, antivirals and things, and he threw Oxycontin actually, into the mix.

And after awhile, I didn’t know why I was sticking to him so I went to a specialist neurologist. Unfortunately, I was seeing that neurologist for more than ten years. She would put me on higher and higher does of opioids. And I didn’t even know what they were. And I remember that I’d been on them for several years, and it started to dawn on me that opioids might be the same thing as narcotics.

There was no publicity about these drugs at the time, and in fact she told me they were non-addictive, which is what the manufacturers said at the beginning.

But I was just beginning to figure this all out, and I said to my neurologist, “Is there any difference between these drugs you have me on and heroin?”

And she said, “Oh, it’s totally different from heroin. When you buy heroin on the street, you never know what quality you’re getting. And this is pure. This is good stuff.” And I’m like, Oh no. And that was when I first realized I was in big trouble.

They had me on an enormous amount of Oxycontin and Percocet around the clock. This went on for thirteen or fourteen years. Every once in a while, I would realize that they weren’t doing a very good job compared to what they’d done before so I would want to get on more. And she’d prescribe more.

It was only in the last couple of years, things changed so much. All of a sudden there is heat coming down on the doctors for prescribing this stuff. So, all of a sudden my neurologist -- she just totally changes her tune. But she doesn’t just change her tune. She starts to rewrite history. And it was something that my wife and I both noticed. She suddenly started saying things like, “Well, that’s why I’ve been trying to get you off these drugs bcause they’re not good for you.” And it’s like, You’ve never said that before.

By this point, I was on such a high dose -- because your body adapts and it starts tolerating a higher and higher amount to just do the same thing. And what eventually happened was we managed to immediately lose an entire huge vial of Oxycontin as soon as we got the prescription filled -- which we later found. But, while we couldn’t find it, I mean all of a sudden I didn’t have any, and my neurologist just freaked out. She became convinced that somebody was selling them or something was going on, and she wouldn’t prescribe anymore, probably because she couldn’t prescribe anymore, but I don’t know.

She just fired me as a patient. She gave me a referral to a pain clinic. But she didn’t follow up with me or anything. And I guess what most people would do is immediately go on the street and try to buy heroin or something. I mean that -- I could see exactly how that would happen.

But, I just realized I’ve got to detox myself and I’m not going to go to a clinic. I’m just going to do it. But it took a long time and it was horrifying.

You’re incredibly hot and then you’re incredibly cold. And I mean like you can put on all the clothes you’ve got, and cover yourself in blankets, and you’re still freezing. And sometimes your head is sweating uncontrollably and you’re unbelievably hot in your head but your body is cold. And you’re just in horrible, nagging, gnawing pain.

It also does a horrendous thing to your digestive system. When I first got on these drugs, I got so constipated I thought I was going to die. But when you’re getting off the drugs, of course you have the opposite situation. I mean, this is disgusting this part of it, but diarrhea isn’t even the right word for it. I mean it’s just about a hundred times worse. And it doesn’t stop. I mean even after you finally wean yourself off the drugs, it lasts for another month.

I started about the week before Christmas. I did not completely wean myself off till sometime in February. But I do feel better than I did when I was on the opioids.

The other thing that kills me about it is how expensive it was, because insurance just paid for a very small amount. And boy, would I like all that money back again.

It was like climbing down a totally vertical rock cliff. So you’re terrified. And you’re working your way down, climbing down and climbing down all day long for a really long day. At the very end of it, you look down, and the ground isn’t any closer. That’s what it was like.

I’m Andy Seiler and this is my story.