“I Am Justin’s Mother”: The Complexity of Mental Illness

John and Sophie are longtime Westporters. In the late 1990s their son Justin was a Staples athlete — and Block “S” winner. Today he lives in a group home. His life has been shattered by mental illness — a horrible disease that has affected his entire family.

John and Sophie have been upfront with friends and neighbors about Justin’s illness. However, to protect their son’s privacy, all names are aliases. Here is their story.

“I feel like I lost my child some time ago,” Sophie says. “He is physically alive, but he’s not the Justin he was, or would have developed into.  He was such a different person in high school.”

Loss and grief are always with Sophie. But certain events — like the Newtown killings — brings those emotions closer to the surface.

Sophie believes there is more to Adam Lanza than the label “autistic.” “Was there ever a professional assessment?” she wonders. “Autistic people don’t typically react violently.” She thinks there was much more going on in his life.

When she hears that Adam Lanza spent 2 years in his mother’s basement, spiraling downward, Sophie can relate. “People can’t control things that are in their head,” she says.

Mental health silhouetteAs a Staples senior, Justin told his parents that he could no longer concentrate. He thought he had ADD. Tests showed he did not. Instead, he was distracted by thoughts and voices.

“Adolescence is a time of change. You experiment with new friends, and doing things in different ways,” Sophie notes.

“Justin had been a good kid. But every kid needs to separate from his parents, rebel, be assertive. It was hard to tell what was mental illness, and what was age-appropriate behavior.”

Sophie’s sister developed schizophrenia at 20, so she worried about Justin. When she asked directly if he heard voices, he denied it. Eventually, he told her he was having “conversations” with people in his head.

The voices grew stronger. Justin felt “spirits” inhabited his body. He was afraid they would “jump” to his parents and siblings.

Justin decided to commit suicide. That way, he thought, the spirits would die with him. But he believed in reincarnation, so he would be okay. One winter day, he was talked down from the George Washington Bridge. He later said he was glad to be saved.

By that point, he’d already been hospitalized. He’d also run away.

“It’s hard for anyone to accept that they have a chronic major illness,” Sophie says. “It’s especially tough with something that affects your mind.

“The mind is the last bastion. It controls everything. You can lose your limb, and get along. But if you lose your brain, what do you do?”

Mental illness awarenessProfessionals spent years finding the right combination of drugs — ones that made Justin feel better, without side effects.

It took Justin years to accept that he cannot work, or live on his own. He’s been in a couple of different group homes.

“He has problems in large groups of people,” Sophie says. “He thinks they’re saying bad things about him. He’s afraid for his life every day. It’s a constant battle.”

“He was social, he had great friends,” John adds. “And now it’s very hard for him to be with people. He doesn’t remember being well-liked, or a good athlete. The past he remembers is not the one we know he had.”

He has not been back to Westport for 5 years. Too many places hold “psychotic memories of bad things he thinks happened here,” his father says. “This is a hostile place for him.”

The more he stays in one place, the more fearful he becomes. That’s why he’s lived in several different residential facilities.

mental health kidFear is a major component of mental illness, John explains. “When we see people sleeping outside in cities, that’s because they’re so scared of being inside. How can we protect people like that?”

Justin, he says, is very lucky. “He is very loved, and he is provided for. He has supervisors, and professionals who can provide activities and discuss his fears. He has some quality of life.”

Justin’s days follow a pattern. He gets up, and goes downtown for coffee and cigarettes. He returns to his facility for group meetings and chores. He’s usually in bed by 9.

Justin’s care is very expensive. His family has spent hundreds of thousands of dollars on his care. Eventually, the funds will run out.

Sophie knows that Justin is one of the “lucky” ones, because he is loved and cared for. Her family is “extraordinarily lucky,” because they can take care of him. She worries about all those suffering from mental illness who do not have the resources and opportunities her son does.

mental I can't keep pretendingJohn believes the Newtown murders will advance the discussion of mental illness. However, he wonders how much the “understanding” of it will change. “People like to throw labels around,” he notes.

“It’s easy to put people in a box, categorize them,” Sophie says. “It makes you feel safe. But mental illness is complicated. The more people talk about it, and see the complexity of it, the more they may ‘get it.'”

Living with a mentally ill family member is, she says, “a long slog.” By telling their story, she hopes, people will understand her son and his disease — and all others suffering from and affected by it — just a little bit better.

(Sophie recommends a novel — Wally Lamb’s I Know This Much is Trueas an excellent portrayal of mental illness’ impact on a family. She also offers these resources: http://www.swrmhb.orghttp://www.mindsontheedge.org; http://www.nami.org; http://www.ct.gov/dmhas/cwp/view.asp?a=2902&q=335208&dmhasNav=|.)

36 responses to ““I Am Justin’s Mother”: The Complexity of Mental Illness

  1. Very well said, we should all walk a mile in someone else’s shoes! Compassion is something we all need a bit more of, especially when it comes to those that suffer from mental illness. It doesn’t just effect the patient, it resonates through the whole family.

  2. Thank you Sophie.

  3. Thank you to the parents who wrote this.

  4. Party On, Brotha

    So glad this aspect is getting the recognition it needs.

    If only all of these bozo’s on 06880 felt as passionately about gun control and the NRA as they did about mental illness and medicine, maybe the world would be a better safer place. Who knows?

  5. I am from a family of 5 children, grew up in Westport, one brother diagnosed as bi polar..has led a long tough life..love that she has read I know this much is true..my favorite book of all time..Ill not insane, there is so much mental illness in this country and people are blind to it, very sad..My brother has had a long hard struggle, but he is a good man..

  6. I can very much empathize with John and Sophie. While I did not have a child who suffered from mental illness, I had a good friend from high school whose life was turned upside down by it. He was exceptionally bright and, in his 20s, his illness took hold to the point where he had to be hospitalized and put into a facility for many years.

    The good news is that his illness was brought under control to the point where he was able to live in an apartment with a roommate. But he never was in a position to work again and he was never 100% back to normal. Nevertheless, some of his friends and I still embraced him as a friend just like the old days and enjoyed his company.

    But there was one moment in time which, maybe better than anything, explains how little we still know about certain aspects of mental illness and how to treat it. We were at a local restaurant–Rich was his old self: telling a couple of jokes, talking about watching a tennis tournament on TV, and having a couple of friendly exchanges with me about politics (we had some very different views about the role of government).

    And then he suddenly started looking around the restaurant to see who was sitting near us, slowly pulled an envelope out of his coat pocket, and slid it across the table to me while speaking in a hushed voice.

    I looked inside and there was a vintage coin in it. Rich had been an avid coin collector in his youth. He said he wanted me to have it and that it was worth at least $250,000. (Rich had lung cancer at this point and, while we all hoped for the best, given the size of the tumor, we all suspected that he might not have that long to live–and he did end up dying some months after this dinner.)

    I told him I could not possibly accept such a gift. But he insisted, and he felt that because I had been such a good friend to him through thick and thin, he really wanted me to have it. I thanked him and said I would talk to his parents (who were both still alive) about it. He asked me not to, and said he was giving many valuable coins to his family. And, again, he looked around the room carefully, to make sure no one was overhearing our conversation or had seen the valuable coin.

    So I expressed my appreciation. And when I got home, I checked on the value of the coin which, as I had suspected, was really under $50.

    The point is, for me, this one gesture perfectly illustrates the complexity of mental illness: all wrapped into one were Rich’s big heart and spirit of generosity, his feelings about friendship, his paranoia as he looked around the room, and his being completely separated from reality in assessing the coin’s value. (He even checked with me later to see that I had put it away in a bank safe deposit box.)

    Another good friend from high school, who did research into brain trauma, said that “the brain is the final frontier.” I couldn’t agree more.

  7. Concerned as Well

    Thanks for posting this Dan. Many parents don’t know that bi-polar disorders often first present when a person is a teen or young adult, just when we as parents figure we are past the ages where “conditions” become apparent. It takes a great deal of bravery on the part of parents to accept that their own child may be dangerous to themselves and others. Please support your fellow moms and dads if you become aware that they are struggling with such an issue, help them to find the strength to admit there may be a problem and to get help and keep looking for help until they feel the issues are addressed. Don’t take any Doctor’s opinion unless if feels right to you. Not all professionals are experts in these fields.

  8. Sank T. Monious

    At the risk of provoking further controversy, I’ll say that we have two tasks here: 1. Protecting society from the consequences of mental illness and 2. Understanding and overcoming mental illness through prevention and treatment.

  9. I completely agree that mental illness is extraordinarily complicated. And these ridiculous NRA suggestions of just locking away anyone who seems odd is an idiotic suggestion. I still cannot for the life of me understand why the semi automatic and automatic weapons with large magazines are allowed by law to be owned by anyone outside of the military. That to me is a piece of the puzzle we could start with, with no down side. I have not heard one good reason why these weapons are needed outside of combat.

    • You are unfamiliar with gun regulations, but you rant on nevertheless.

      • You are unfamiliar with manners, but speak nevertheless. Can you give one good reason why a citizen would need a Bushmaster? Still have not heard ONE!

        • Sank T. Monious

          There ARE people who enjoy using .223 Bushmasters for target shooting and I suppose it might also be used for home defense although I’m afraid that very few owners are properly trained and experienced enough to do anything but shoot themselves in the foot. Its really not a very good weapon for either home defense or target shooting. The military isn’t wild about the M-16 version of it, it was foisted on the Marines and Army by the same procurement experts who found them the $600 toilet seat, it was originally designed for the air force perimeter security not as a battlefield weapon. Serious Marine sharpshooters prefer the M-14 or the Springfield 03 30-06. The Bushmasters should be gotten rid of, the only people that seem to be satisfied with them are homicidal maniacs and no serious (non-psychotic) gun owner would be caught with one. They function mostly as surrogate penises for the phallically impaired.

        • Who is allowed to own automatic weapons in the state of CT?

          Give me one good reason why someone “needs” a Porsche?

          • Of course no one “needs” a Porsche. But it serves as transportation. And if they periodically blew up, killing people, they would be recalled. The Bushmaster is for entertainment, and it seems to me that the right to own those types of weapons for “fun” is simply not worth the risk.

            • Sank T. Monious

              A Porsche is a great, well engineered automobile that enhances the joy of driving for those in a financial position to own one. The Bushmaster .223 is a cheap, overpriced piece of shit that has served no one well except psychotic mass murderers. Political procurement joint weapons “experts” forced it on the military and in Vietnam it probably killed as many US soldiers as the VC because it was known for jamming in the jungle. Even if there had been no Newtown, it would benefit society, gun owners and the NRA to destroy the blueprints and melt down the ones that are left. There may be some benefit to letting the police carry them because they’re so ugly and so useless that even Barney Fife looks mean when he carries one and that may have some deterrent value.

              • The Army does not use the .223 round; it uses the .556. If you don’t like the Bushmaster don’t buy one. It is not a military grade weapon, despite all of the media spewing to the countrary.

                I have had 4 Porsches, not every one was of equal quality.

                The M-16 in competent hands functioned just fine. The weapon it replaced the M-14 had problems as well; thanks to LBJ I got to use both.

                Your idea of benefitting “society” is to force everyone to act as if they believe as you believe; sort of like the typical religious fanatic.

                • Sank T. Monious

                  You’re right, if it was kept clean and dry the M-16 would fire. Definitely what you need in a jungle weapon. Did you prefer the M-16 to the M-14?
                  I’m not a control freak but I would be to save the children of Newtown. I’ve always taken satisfaction in being able to keep and use firearms responsibly and hope that when all of this is settled it will be possible for private citizens to retain that freedom. But if it is decided in a free society that protecting children is paramount I’ll accept that and be glad my children are alive. I wish the children of Newtown were still alive.

            • If it periodically crashes into other cars? Worth the risk to whom? Why are you in favor of punishing those who have committed no crime?

            • You did not answer the question. Who in CT is allowed to own an automatic weapon?

  10. Gun Control Crowd Not Serious

    Tracy, And responsible gun owners will never understand your lack of understanding to protecting ourselves and our families.
    The criminals have their guns and high capacity magazines, hence the police having theirs, so there is a valid reason for others to protect themselves as well.
    During the 1992 L.A. riots, Korean shop keepers faired much better than their neighboring shops who did not have semiautomatic weapons to fire warning shops of the mobs. Had they had single shot or six shot guns they would likely been overtaken.
    I did not listen to NRA president’s statement, but did read he said, “the only thing that stops a bad guy with a gun, is a good guy with a gun”.
    To me and many millions more, that is a very true statement.
    If people here or across the country were serious about children’s safety, they would be talking and doing a whole lot more, instead they’re just beating the ‘gun control’ drum. Tells me they’re not serious and are only exploiting the situation to meet their true agenda, which was there long before Newtown.
    Also, the ban ‘assault rifles’ crowd is being disingenuous to want to ban these guns while ignoring semiautomatic handguns, which are used more often in these types of attacks anyway. When the killings continue, what will you ban next? That’s right, you will come after those and then after that…
    Which is why I and tens of millions of law abiding Americans will not give into you.
    Lastly, while police chiefs across the country may publicly deny it, I would like to know what police officers tell their immediate family members on who they should protect themselves across the country. What do they tell their mothers, fathers, brothers, sisters and grandparents is the best way to protect themselves? I would like to know what percentage of these people related to police officers own guns? I would be willing to wager it is much higher than the national average of those who are not related to a police officer.
    Many more issues to be seriously addressed if you want to win the argument, otherwise you have a political agenda.

    • Gun Owner Against Automatic Rifles

      Thank you “Sophie” and “John” for sharing your story. As a mother myself, of a preteen and a teenage boy, I have become more aware of their mental state instead of just brushing it off. Thank you for opening the window onto a problem that we, as Americans, have such a hard time look at.

      I own a gun. I am a mother and member of the NRA. My kids have all taken gun safety courses. As for the gun laws, there is NO reason for guns like the Bushmaster AR-15 or other automatic rifles to be legal!!!! The argument is not about taking someone’s right away to protect themselves or their family, it’s about putting into place reasonable laws so that people do not have access to such high powered killing weapons. (The old “what will they ban next” argument has been use when women wanted to vote, when African Americans wanted to vote, when gay couples want to marry, when the armed forces were integrated, when taxes were raised…it is an old and very tiring argument!) I agree that their needs to be a discussion about semi automatic but those don’t wreak the kind of havoc that assault rifles do! I suspect you live in the comfortable and safe ‘burbs’ where a hand gun suffices just fine. The ban on assault rifles is not about taking away your (or my) right to own a gun, it is about putting reasonable measures on the types of guns that are owned. Until you have lived or worked in the inner city (like I have), please refrain from using it as an example for why having a gun is a “good” thing (your reference to the LA Riots). Talk to a few mothers, brothers, sister, fathers in these neighborhoods, many of them who have had their loved ones killed – gun in hand.

      • Gun Control Crowd Not Serious

        Thank you for your thoughtful reply, however it is only your opinion whether AR-15s are necessary by civilians (which are nothing other than semiautomatic rifles).
        As far as gun violence and murder in the inner city, that is mostly by a wide margin done with semiautomatic handguns.
        I do not believe in any way shape or form the anti-gun crowd won’t be coming for those next.
        Meanwhile the criminals still have all their guns since you have done nothing to disarm them; reason being, because you can’t.

        As budget cuts to states and municipalities begin to take their toll and criminals become more desperate, all the while our president demonizes the wealthy it does not add up to a safe future. So I’ll will protect my family and self with superior fire power.
        When you make progress reducing violent crimes by crazies and criminals then I will reconsider my beliefs.
        Not you personally, but those with this anti-gun mentality that does not make anyone safer.

      • What “automatic rifles” are sold legally in CT?

        • Gun Control Crowd Not Serious (or real)

          Thank you anonymous for correctly pointing out the common myth that these rifles are not automatic and are no more easier to shoot than a semiautomatic handgun.
          Makes me seriously wonder if ‘Gun Owners Against Automatic Rifles’ is real since any real responsible gun owner would know that.

          • Gun Control Crowd Not Serious (or real)

            should not have said ‘not automatic’, but automatic.

            • Most of those who blather on about “gun control” know nothing about guns or the laws that are on the books to control gun ownership. They are interested primarily in advancing a political agenda.

  11. Both the book and filmed versions of “We Need to Talk About Kevin” are really compelling looks at teenage (and earler) mental illness that spirals out of control with disastrous results.

  12. What happened to the point of this discussion: mental illness and society’s right to curtail the rights of those suffering from it?

  13. Thank you for sharing this parent’s narrative, which I am sure echos so many others. There are few resources available to provide true quality care for those suffering, who do not have 5 to 8 thousand dollars available every month to cover expenses. Our family member lives in daily fear and paranoia. We are grateful for the public assistance she does get….and feel helpless and frustrated that we cannot do more to ease her pain.