12 steps

When Mental Illness Strikes


Just as no one wakes up in the morning and says, “Gee, I think today is a good day to become an addict,” the same is true about biochemically-based mental illnesses. The fact is that mental illnesses and addiction often run in families and often in tangent – so that the bipolar may also have a drug problem due to attempting to treat the symptoms by using recreational drugs and getting hooked.

I have heard the same thing over and over. “If only he loved me more he’d stop drinking/using” or “If she only took her pills she would not be depressed.” or “He’s just on the pity pot.” Variations on the above from parents, children, and spousal units go on seemingly endlessly.

It might be that an addict or alcoholic can be tough loved to health, but add into the mix a major mental illness such as schizophrenia or bipolar disorder, and the picture changes radically.

Many years ago, in a galaxy far, far away I had a good friend who was a medical professional who had bipolar disorder. This person was religious about seeing the shrink, taking meds, doing talk and group therapy. However, there is something known as “breakthrough” where brain chemicals can shift, sometimes rapidly and radically. One day my friend awoke convinced the CIA was monitoring everything and we got a call that this person had shaved their hair and destroyed all their furniture looking for “bugs.” They didn’t do anything wrong. They could not help what happened.

When we add in a chemical addiction we add in shame and blame to the shame and blame already associated with mental illness. These folks are even more likely to be considered weak-willed. “If only” they did this or that then life would be fine and recovery assured. Except that is not the way it works.

All the psychoactive medication in the world will not fix a breakthrough. A breakthrough may cause someone to stop taking medication. Severe depression may so immobilize someone that they can’t recruit enough internal resources to do what they need to do. It is like the death spiral of a plane in an old WWII dogfight (air warfare) movie.

Tough love does not help someone who is immobilized emotionally due to mental illness. Holding their feet to the fire may cause them to withdraw further. It is perplexing for individuals in the drug treatment field since they’re used to confronting a person on their dysfunctional behavior. It is often more than perplexing to 12 step members who are trying to cure one problem and potentially exacerbating another.

One must first dry a person out from whatever drug of choice they have before treating the mental illness, but there is no magic bullet. And therein lies the problem.

It does not mean that no one with a dual diagnosis ever recovers. They do. But it is a far more difficult recovery. It takes far more group support from their 12 step group members and an understanding that medications that might be verboten for someone else might be required for a person in DD recover.

If we add to the above issues the issue of being Deaf or Hard of Hearing, and without adequate access to interpreters to assist with the mental health or drug treatment process and it seems an almost insurmountable problem. While much of the 12 step material is fairly easy to understand, if a person has only a 3rd grade reading level much of it is unintelligible.

It is critical that we both insure the adequate education of the Deaf and Hard of Hearing, but that we also provide adequate resources to assist in mental health and substance abuse treatment. Failure to do so causes individuals to end up on the streets or in jails and prisons when with care, they might be functional members of society.

Substance abuse and the Deaf


Unfortunately, there has not been a lot of research done on substance abuse in the Deaf Community.  It tends to be as problematic a topic as mental illness or domestic violence.  People in small, insular communities where there is a shared language and culture, one finds that acceptance is everything, so problems tend to be shoved under the carpet as long as possible.  To be identified as a problem is to potentially lose one’s entire life.  It is as traumatic as being banished from a Native Alaskan village or from an Amish community.  The only difference is that the person who is banished has the capacity to speak English.  The Deaf Community is the only community one moves into and never emerges from again.  Even

credit: fidelisprivatus’ media, photobucket.com

with Cochlear Implants the individual is never fully hearing – nor potentially, fully Deaf.   No wonder talking about everything from HIV/AIDS to alcoholism is taboo.

Alcoholism is the most predominant form of substance abuse.  Alcohol consumption is socially acceptable and alcohol is easy to get, even for juveniles.  Substance abuse involves a greater amount of what sociologists call “social deviance” because individuals have to break the law to get their drug of choice.  Alcohol is often the gateway “drug” to everything from cocaine to prescription drug abuse.  It is rare to see someone who is a drug addict who does not use alcohol in a pinch to keep the jitters of withdrawal away.

Since the government does not track alcoholics, we tend to say that between 1 in every 10 drinker develops a problem with alcohol.  It could be 1 in 7.  Perhaps they are “problem drinkers” and perhaps they end up full-blown alcoholics.  Most, but not all scientists believe that alcoholism is a chemical disease because of how it breaks down in the bodies of alcoholics and how it affects their brains.  It appears to be inherited and twin studies indicate that twins separated at birth tend to both be alcoholic or non-alcoholic regardless of their upbringing.  Thus, it is not a moral problem.  It is not an issue of willpower.  However, in society, we view alcoholics and addicts as weak willed who could pull themselves up by their bootstraps if only they loved their family enough.

credit: Randall3515, photobucket.com

Alcoholism is progressive, chronic, and ultimately fatal.  A variety of studies indicate that alcoholics die between 10-15 years earlier than non-alcoholics.  This doesn’t include suicide, car wrecks, accidental death, and homicides, nor does it reflect the mixing of drugs and alcohol (called amplification) that takes place today that can equal overdose or death.   Addiction to drugs – street drugs and prescription drugs – are similarly progressive, chronic, and ultimately fatal – for all the same reasons.

So where does the issue of Deaf addiction to drugs or alcohol make it any different from hearing addiction to substances?

If one is a Hispanic, Spanish speaking alcoholic, one can either learn English or find treatment facilities where there are Spanish-speaking staff members.  If one is Deaf one cannot learn to hear.  And there are vanishingly few treatment options for the Deaf.  In fact, while there are plethora of Spanish-speaking professionals and services in America today, there are virtually none for the Deaf.  Why is this, when the Deaf are allegedly protected by the Americans with Disabilities Act (“ADA”) and a mere language oral language is not protected?

Largely, because Spanish communities are far larger and more pervasive.  We even have Spanish Language TV today.  The same thing applies to many other language groups in the United States.  There are, for instance, cultural centers for Laotians, Vietnamese and Tibetans in the Boston, Massachusetts area.  There are no “cultural centers” for the Deaf.  Most Deaf or Hard of Hearing (HoH) individuals are born to hearing families.  Most hearing families do not learn American Sign Language (ASL) or Signed Exact English (SEE) or even Pidgin Sign (PE), although they may develop a sort of Family Sign developed at home.

In the past there were no hearing tests administered to infants at birth.  It was not in the least unlikely that the deaf child would be called “retarded” or the HoH child called willful, stubborn or air-headed.  Children who were born profoundly deaf from maternal illness – from lead poisoning to illness such as measles – were not only denied in utero exposure to sound and early exposure to oral or signed language – many of these children suffered from other problems, from visual problems to brain injuries.  So the child could not only be deprived of sound and language, they were also deprived of all sorts of normative experiences.  Children born with brain injuries may need intensive assistance to reach normal milestones.  Today we have Early Intervention, but that was not always the case.

At the Symposium on the Deaf, Mental Illness and Criminal Justice, I learned a great deal more about what the differences are between “low functioning” deaf and “high functioning” deaf.  Ultimately, brain injury, especially in combination with early language deprivation can lead to a lifetime of problems due to an inability to understand societal norms, including an inability to empathize with the emotions of others.

From studies done in the United Kingdom, likely not much different from the United States, low functioning individuals have possibly a 35% chance of mental problems, mental illness and issues with substance abuse.  And due to their lack of English skills – and often ASL, SE, or PE skills, being able to understand a problem or communicate emotions or frustrations are limited. Only in the UK there is an in-residence program of approximately 18 months where issues such as these can be addressed.  We have nothing like it in America.

Further, unlike hearing individuals, the Deaf Community is small.  Again, there are no precise statistics kept on the Deaf/deaf.  We know that about 1 out of every 1,000 children is deaf or profoundly hard of hearing.  Cochlear implants and hearing aids notwithstanding, those children are going to have hearing problems all their lives.  Assuming 315 million people in the United States that gives us a minimum of 315,000 Deaf and HoH.  There may be as many as half a million.  Compare to Asians (in general) and they are 4% of the population, well over 1.25 million.   There are about 45 million Spanish-speaking Americans (first or second language).  There’s a reason why there are fewer resources for the Deaf.  We don’t have the numbers to be a political force.

So – we have a few issues:

  1. We’ve got a small, insular Deaf Community.
  2. The Deaf community is protected by the ADA, but not large enough to have political clout.
  3. There is little financial incentive to create treatment centers for mental illness or substance abuse in the Deaf Community.
  4. Further, many individuals with serious drug or alcohol problems may have poor language and expressive skills in ANY language, with a concomitant problem in expressing emotions.
  5. Add to that the fear of losing their place in the local Deaf Community and you’ve got a powder keg looking for a match.

Individuals with substance abuse problems often end up on the wrong side of the law.  Go to enough open AA and NA meetings that are discussion groups and you will find out that many, if not most, substance abusers end up on the wrong side of the law – often more than once.  Not just driving under the influence, either; there are violent fights, thefts, and a variety of other crimes from selling drugs to burglary or domestic violence.  And that’s in the hearing population.  These are people who generally have a good command of their language, have a decent education, and who have often had successful careers before bottoming out.  Imagine, then the problems associated with being Deaf or seriously Hard of Hearing, having limited language and expressive problems and a substance abuse problem?

In Massachusetts there are a few AA and NA meetings in various locations with interpreters for the deaf.  There are no intensive inpatient treatment programs focusing on ASL, SEE or PE speaking individuals.  There is no funding for interpreted AA or NA meetings in New Hampshire.   Many Deaf individuals with drug and alcohol problems need more intensive treatment than 12 step meetings  and there is very little nationally for the deaf  and what there is may be very expensive and so far away they can’t get there. Follow up becomes problematic and they may be rejected in the local Deaf community upon their return.

Because of the lack of treatment options a disproportionately high number of deaf individuals in need of treatment end up in trouble with the law.  And when they do, the legal system is woefully unprepared to deal with them, which is a story for another day.

For those who wish I’d speak a bit more simply or plainly, I can only say I wish I had the gift of plain speaking of the old timers at AA.  Not yet.  🙂

Research


It is actually not long until March.  If I am to present a 20 minute discussion on Substance abuse, the Deaf and it’s impact on arrests and prison time I must get to it.  The research so far is older and sort of disheartening. If you have information for me, belly up to the bar, boys and girls.

Hearing Aids – not for the faint of heart


Oh fer goodness sake! Who knew that the earbud of my Naida was going to be so fragile?  I had no idea that the comfy little ear bud was going to fall apart – in my ear, no less.  I was taking it out using the little pull string when the string came out, along with a tiny speaker and the rest of the “guts” I did not realize were in there. My other ear pieces are just some sort of molded plastic with a tube.  I was sitting there in the car, wondering how to get the rest of it out without the little string thing. Suffice it to say, I did get it out and the thing looked like it had run afoul of Wolverine from the X-Men. What was THAT about?  I called the dealer and it will cost $120 for a replacement for an essentially NEW product. I’m mind boggled.  Aren’t they supposed to last longer than a few months?  It is not even a year old!

So today I looked for my last hearing aid – found it, put the battery from the damaged one in it – nothing.  Not good. So I found the hearing aid I’d lost for a year (under a car mat, no less) and put the battery in that one.  It booted, then died. I considered the patriarch of the clan, but went with the one that booted. Got a new battery and put it in.  I realized that it actually fit better behind the ear than the Naida so I’m going to have to get the Naida refitted. It has not been particularly comfy for me in the BTE part.

Because one good FAIL deserves another I killed my iMac by downloading the new OS (sigh) and spent two hours on the phone with support trying to figure out whether it was better or worse with the old hearing aid on (no iCom for that one), getting disconnected once and then still having to truck up to Salem, NH to the Apple store to have a Genius  fix it in 10 minutes.  I tried wearing the old aid in the store, but he caught all the background noise and I turned it off and tucked it in my purse so I could hear the Genius.

I tried wearing my old one to a meeting tonight where there was a lot of background noise (and terps) and ended up taking it out yet again. Thankfully, the folks with the little kid who was bored out of his mind went home at the break, but I decided to just do terps tonight. I’m tired of sound headaches and the older hearing aids tend to give me more of those. Sometimes I wonder about those old ear horns… ear horn

Mentioned this to some HoH friends who freaked wondering where their back-up aids were in the event their primary aid went down.  A good reminder that strange things can happen when you’re dependent on an appliance that is small and sort of dainty to hear things.

Let this be a lesson to those of us with back up aids.  Know where they are in the event you’ve got a sudden system failure.

Photo of earhorn by Photo by Chainsawbait

It is still all about perceptions


Around a year ago I was merrily attending  ACA meetings online at stepchat.com  The only thing I missed with the fellowship of a real life group. In talking with a variety of people in other 12 step programs I heard a lot of comments about really needing an ACA group (rather than an Al-Anon ACA group).  The focus of the programs is decidedly different.

So I ordered a few hundred dollars in books paid for a meeting space and endeavored to start a group. Of the three core members one’s in Great Britian, another is now working two jobs and the rest of the folks who drop by are just checking it out.  Last week I gave notice at the church.  We can’t make the rent and – to be honest – I’m tired of holding it together.

The perception is that if you build it they will come. There a million reasons not to come and the perception of “I can go next week” is all too easy.  It’s like a lawn.  It can be seeded with grass, but if the turf is not tended then you end up with barren muck.

I’ve heard shock, “Oh, you’re closing it down?  Where will I go?” My thought, “You’ll go wherever you’ve been doing these last 6 months won’t you?”  No muss, no fuss.  I gave it six good months and this is all I’m giving it.  Seems logical that it would either catch fire or fizzle.  It fizzled.  Back to stepchat.com  I love stepchat – I can always hear there since it is all java based chat. 🙂

Out of the woodwork


People are starting to emerge from the woodwork at my interpreted meetings. First they tell me how beautiful the motions by the interpreters are, how ASL is like dancing hands. I smile and say, “Yes, but it is also a language I speak.” Over time more and more people come up to me.

Last night a woman said all the things about the beauty of the language (and it is beautiful), and then she told me about her hearing loss. And how she forgot her hearing aid. And if only she understood my terps. So I gave her my card and told her to get in touch with me over my cell phone and we’d get together and I’d teach her the basics and introduce her to Ron, who teaches 12 weeks for $50 and how good he is, how we could visit with my friend, Emily, who studied to be an interpreter and who wants to do only 12 step groups, and how to find free sources to learn and socialize using sign. Then I mentioned how I have a terped ACoA meeting – she’s going to come to learn the language – and the terped open AA meeting on Friday right next door to where we were last night. I think she’s going to be my “new best friend” for awhile. 🙂

I swear that the more times people are exposed to terps and the HoH and deaf the more interested they are. At first it was an oddity – when I missed one week because I was in an ASL immersion program everyone in the Al-Anon group missed me and the terps. One fellow wondered why I could speak so well and I explained to him I have some residual hearing and I “voice” well because I could hear fully until I was 18 months old, how I read lips and use what sound I can gather to understand one-on-one conversations and how sometimes in groups like our Al-Anon group some voices are too soft and people are too far away for me to lip read. We chatted a bit about how critical it was to NEVER hit a child in the head and how I was the poster child for what could happen as a result of a head injury. He thanked me for sharing that information with him.

I now speak regularly to folks with hearing loss, tinnitus, Meniere’s syndrome, all sorts of things. They’re coming out of the woodwork where it is safe to do so. Apparently, I am making it safe for others to speak up. I’m thrilled about that. So many of the HoH suffer in silence, literally in silence and isolation.

It makes even more of a point of something I once said (and got blowback on by another poster) on CrimeDime. It is my opinion that we would be well advised to teach either ASL or Signed Exact English from grade school on – every day in one class or the other. Why? Because as we age – and now even as we grow up – we lose hearing. So many people have hearing problems these days – we live in a noisy world and even kids have hearing loss from headphones. So why not have a tradition of both a spoken language and a signed language. Granted, if you’ve no arms or hands that would be tough, but that is an exception to the rule. If one is blind there is tactile sign language.

If everyone had a basic knowledge of sign we’d see people signing in noisy environments and across distances where you’d rather not shout. If everyone had a basic knowledge of sign we’d see less concern about the problems of wearing hearing aids and a knowledge that any of us could need augmentation at any time. Sign is not a replacement for being able to hear the car that is about to hit you, the lovely sounds of a choir or the cry of a child in danger. Sign language expands our world. Frankly, most of us will never speak French or German (regularly taught in schools across America) but we would actually use ASL or SEE if we were taught it.

And last night I was so happy to see the terps. I’d gone through a court hearing that day with no terps or CART and though I did okay, seeing the terps last night I just wanted to run up and hug both of them because it was a relief to see someone I could understand and not have to panic that I’m missing something. They both reminded me they are not legal terps (which I know), but I missed having a terp soooo bad in court. Yes, I functioned, but I might have flown higher and done better with a terp. They are, each and every one of them, precious people to me. Next time I swear I will bring them cold drinks and cupcakes or something to let them know how much I value them.

Control


Control – how much do you think you’ve got?

Personally, as the Adult Child of an Alcoholic/Dysfunctional family I am a control freak by nature. If I could figure out how to do it, I would have ultimate control over everything that happened in my life.  Only half-kiddingly have I commented that in an ideal world I’d own a small home atop a hill surrounded by razor wire with armed guards at the gate.  Of course, that is an exaggeration, but it does give a glimpse into my need for security.

Security – we crave it. We try to achieved it.  We save money that has largely been lost in the Great Recession (which I consider the Great Depression, Part II).  We want totally stable martial situations when the majority of marriages now end in divorce.  We want our kids healthy, happy, and to grow up to do better than we did – in a time when kids are incredibly adversely impacted by designer drugs, bullying in schools and in cyberspace, and a society that is so high stress, complex, and changing so fast that neither they nor we can keep up with it.  These kids don’t even know if they will be able to move out – ever – from the family home because the economy is so bad. And sometimes Mom and Dad are moving home with their little kids to the grandparents home because they are unemployed. Yikes!

When we are little we find two things we have control over:  eating and pooping.  Kids can refuse to eat, eat only hot dogs, or want to eat everything in sight. They can refuse to use the potty, end up refusing to go at all and develop swollen bellies (yes, folks, it happens) and other various permutations.  Why do we think their favorite word is “No” when they are tiny kids.  It is an issue of control over a situation in which they have virtually no control.

Personally, I like the ACoA adaption of The Serenity Prayer. “God grant me the Serenity to accept the People I cannot change, the Courage to change the One I can, and the Wisdom to know that One is Me.”  I have virtually no control over what others do or do not do.  The only control I can exercise is my reaction to those actions.  There are times I feel totally helpless, tossed hither and yon by the vagaries of life.  And while I am powerless over the actions of others and while my life may be unmanageable as long as I attempt to control those actions of others, I do have the power to manage my own responses.

I’m Hard of Hearing and functionally Deaf in noisy situations. Talk about out of control! I can only do what I can do to make others aware, to position myself so I can hear, to ask for help, to ask for an ASL “terp” or CART in work situations where understanding is critical and to manage my responses as a way to take care of my needs. I can’t make anyone else understand, necessarily, although I can force some compliance in some situations through application of law.

As long as I keep the focus on me instead of them, as long as I take “the next right step” and hit my knees every morning and evening to ask for help from my Higher Power and thank my HP for all the blessings I have – my life, the new day, the home of a friend where I live, her darling dog whom I love so much, my daughter and grandkids, the fact my old car still works, and so on and so forth then I don’t have to control persons, places and things that are out of my control.  Rather than worrying about control – or my lack of the ability to control everything – I do my best to develop an Attitude of Gratitude.  Some days are better than others. And I’m grateful for every day – every day above ground is a good day.

 

I want control of my life again


I was told that this morning by a 30-something fellow of my acquaintance who is single parenting and divorcing.  I want control of my life again.

I laughed like a hyena and told him that when the first child arrived that assured him that he was never going to be in total control of his life again.  At least not until they were grown and gone and even then he should not count his as yet unhatched chickens.

Despite the vagaries of ex-spouses the reality is that life happens.  Kids get sick, former spouses get sick, run over by trucks or whatever.  Life is what happens while we are making plans for exactly how ordered and perfect it is going to be.  There are broken bones, skinned knees, sports accidents, car accidents, car failures, unexpected late work days, baby sitters who quit, older siblings who refuse to watch the little kids, school schedules that change unexpectedly, snow days, problems on field trips, and kids who have accidents at school with no change of clothes handy.  There are bullies, and sometimes your kid can be the victim while at other times the bully, problems with grades, planning for college, wondering what to do when they start dating and what to do when they want to drive.  There are a million and one things going on with kids.  Kids get sick, have tantrums, play parents against each other, want pets, grieve over pets that died, want more pets and want all the attention they can get except when they want Mom and Dad to leave them alone.  More than one child is exponentially more, not arithmetically more.  Former spouse?  Good luck, unless you can become a team you will drive each other nuts for years.

Of course, there are work problems, dating issues, house care and the feeding of plants, small children, the lawn and various other critters in the home.  There is washing, ironing, folding, realizing the clothing no longer fit, shopping, and more work problems.  There are issues with cooking, cleaning, trying to sleep, animals pooping in the house when they get out, missing gerbils in the walls and confetti in the carpets.

If you want to have total control over your life consider the following:  Get survivalist training, find a remote area in Canada or Alaska and go hide.  Or get into a 12 step program and learn how to let go and enjoy life without blame and shame and anger and control.  Your choice.  But do not have relationships and do not have kids.  That way lies madness for the person who wants control.

The dance of ASL


Opera singers prefer the round tones of Italian. Many people consider French the “language of love” and think it sounds sexy.  Many non-signers see American Sign Language (or Signed English, for that matter) as a beautiful dance of body and fingers. These days, it to me is simply communication.  However, I have also started a still photo series on the photoblog on the Art of ASL. It is harder than I thought, because without motion the word is sort of lifeless.

And therein lies the great beauty of ASL.  It lives and breathes for me in a way which no other language does, including my natal language of English. I now pick up the nuances of the individual speakers.  The most skilled terp  I use is also the hardest for me to understand – go figure. My favorite terp is so busy I barely see him once a week.  He’s just the best – he is so expressive!

I requested terps for one of my 12 step meetings and now we’re the first in the state to offer it for Al-Anon.  At first the group simply said, “bring them on” but now people are ecstatic. They want to learn the language.  “I’m so glad you came.”  “It is wonderful having the interpreters here!” ” I wish I knew the language.” To the ones who are serious about learning I said, “Sit next to me, listen to the words and correlate them with the signs.” I have 17 DVDs full of ASL – anyone who wants to learn – I had the technology,

On the one hand I have a group of happy, enlightened people who see terps for the deaf a wonderful thing, a learning experience, something life-enriching. And then I get a call about a Deaf person being attacked on the job for the crime of being deaf. Being Deaf is a state of existence in which you don’t communication with sounds, you communication with expression and motion. It is no reason to attack  a man.  But that is a concern for Friday.  Tonight I am thankful for a terp and a warm group.

Arranging for my first interpreter


Wow, who knew it would be so easy? Not me. I’m apparently sort of clueless about these things. Then again, I’m just entering the world of the folks who need CART and terps, so I’m feeling my way slowly.

I’m a 12 stepper. To me a meeting is a meeting and the steps are the steps, but I tend to relax into either the Al-anon family groups modality or the Adult Children of Alcoholics (and dysfunctional families) modality, however I’m also good with open Alcoholics Anonymous meetings since they’re the granddaddy of them all and there’s so much wisdom to be found there! In fact, the first ASL interpreted meeting I found was an open AA meeting. It has been the only one I’ve been able to cope in since I “un-graduated” myself from the program.

After awhile I started poking around to find out how I could finagle a terp (ASL Interpreter) for other meetings and just today I got my wish ala the Commission for the Deaf and Hard of Hearing. I am so excited! While a lot of a 12×12 meeting (12 steps/12 traditions) is reading I rarely know what others are actually reading when it comes time for me to start up and I have to ask where we’re at .  Since I voice well reading a paragraph isn’t a problem. But after the reading comes they sharing and that is when it gets really exciting. Since I hear from only one ear I have no idea how to make everyone be straight across from me or directly to the right. And when reflective speakers put their fingers or hands over their mouths then I can’t lip read. (what is with that?).

So starting next week we’ll have a terp at one of my meetings and I’m so excited I can hardly stand it. And I found out there’s a meeting in the state with CART. Wow! Equal access!