World AIDS Day – December 1, 2013 – “And the Band Played On”


On September 11, 1993, HBO premiered the television film docudrama “And the Band Played On.”  I remember sitting in my mom’s living room, watching this movie with her and my husband, Kendall and thinking to myself “WOW, they really nailed this one!”  You see on October 18, 1990, my only son, MJ died from lung complications related to AIDS.  At the time of his death, he had just turned seven.  He contracted HIV through a blood transfusion in January 1984.  We were in a car accident and he needed surgery.  The hospital would not let me give blood because I had previously had mononucleosis and the virus stays in your system.  If it becomes active, the virus can be spread to others.  Therefore, my son had a transfusion with bank blood (It should be noted that the American Red Cross did not start testing newly donated blood for HIV until after the FDA licensed the first test to detect the antibody to HIV on  March 3, 1985).

The movie version of “And the Band Played On” was adapted from the book by Randy Shilts, which was released in 1987.  A review from Library Journal summed up the book this way.  “In one of the most important books of the year, Shilts, who has covered the AIDS crisis since 1981, sets a gripping narrative of human tragedy against a background of political and scientific controversy. His implication: the AIDS epidemic in the United States might have been averted had it not been for resistance from the government, scientists, the media, and the gay community. Shilts has the ability to draw the reader hypnotically into the personal lives of his characters. That, and his monumental investigative effort, would have made this a best-selling  novel if the contents weren’t so horribly true.”  Mr. Shilts worked for the San Francisco Chronicle and this book covers the first five years of AIDS almost day-by-day.

In 1985, President Reagan used the word ‘AIDS’ for the first time on September 17, 1985 in response to a reporters questions.  In 1990, President Reagan apologized for his neglect of the epidemic while he was president.  From 1980-1990 58, 250 people in the US ALONE, died from HIV/AIDS related causes, because the government, despite knowing as early as 1978 that gay men were starting to show signs of what would later be called AIDS.  Nothing was done to stop this until 1985.

While all of this political stuff was going on, I remember trying to deal with the doctors (who originally thought that MJ had leukemia, but finally decided to test for HIV as a “last resort” with my husband’s permission and without my knowledge).  Once we got that diagnosis it felt like “all hell broke loose.”  Since it was such a new disease and very little was known about it yet, We had to deal with all kinds of different reactions from our “friends.”  Parents wanted my son, kicked out of cub scouts, school, church, and sports activities.  I spent most of the time in full blown “mama bear” mode, but MJ at all of 5 years old just kept saying “Mommy, it’s okay, they are just scared.”  I was terrified.  There wasn’t a lot to research about HIV/AIDS and the only words that kept popping out at me were ‘THERE IS NO CURE.”  I was going to lose my baby, no matter what, and try as I might, I couldn’t make sense of it.  Now just to get him any kind of treatment was a constant battle.  I fought the doctors, the hospital, the insurance company and every politician I could get a number or address for.  I got no where.  I sent so many letters to White House, that got angrier and angrier (to a point), that I’m surprised I was never visited by the Secret Service.  LOL.

Almost all the nurses who took care of MJ looked like they were part of a Hazmat crew…Not one of drop of anything was getting on them if they could help it.  Part of me understood that (I had cleaned up his scrapes, bandaged them, and came in direct contact with his blood since he could walk), but the mom in me hated that he was being treated differently.  There was one nurse, Annette, who wore goggles and gloves and that was it.  We REALLY liked her.  At one point, one of MJ’s doctors suggested that I get myself tested for HIV, but then I refused; I was having enough of a hard time fighting for what my son needed, I didn’t need to have to that added stress (secretly, I hoped I was positive, because then I wouldn’t have to live without my son for very long).  In retrospect, I completely understand the cruel actions of so many people in our lives, including some members of my family (the only family members who didn’t change anything about they way they interacted with MJ were my mom, my brother Pete and his wife, Angie.  Their oldest daughter, Alexandra was born in 1988 and interacted with MJ almost daily).  Not much was known yet and everyone was scared.  My son handled all of this so much better than I did.  He never got mad, never showed anyone how much the rejection hurt and never said anything mean.  Every night when he said his prayers, he would ask God to forgive them and to make them less scared.  At this point, I couldn’t even pray to God because I so full of anger at Him; after everything I survived during childhood, now He was taking the one person that meant the world to me.

MJ spent the last two weeks of his life in the hospital, in an out of consciousness.  By this time he couldn’t walk and could barely talk.  I was with the entire time, except when Kendall or my brother would make me leave to get a shower and some fresh air.  At the end, I was with him along with Kendall, my mom, my brother and sister-in-law.  He was able to tell everyone that he loved them and then, with his last breath, he made me promise that I would be OK and not to hold a grudge against anyone who may have acted cruelly because they were afraid.

World Aids Day is an opportunity for people worldwide to unite in the fight against HIV.  For more information, please check out this website:  www.aids.gov  Get information and GET TESTED!!  Send a text message with your zip code to 566948 to find a testing site near you or go to http://hivtest.cdc.gov

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The Problem With Being Strong is That Nobody Bothers to Ask if You’re Okay


With Thanksgiving being tomorrow, I’m trolling my Facebook wall and everyone is making plans to spend the day with family and friends, eating, watching football, and celebrating.  My family plans to do all this as well, but there is a damper on this Thanksgiving, it will be our second one with my brother Pete took his life and the first since Alexandra and Stephanie took theirs in January and October of this year.  On top of having to get through Thanksgiving, Monday will be two months since we lost my sister.  Sometimes it really does feel like the hits just keep on coming.

One thing my family and I decided to do tomorrow is to make sure that we give thanks for the things that we have as well as saying something we are thankful for about the family members we have lost.  It’s funny how all of us in the past 16 months have had the same experience of people avoiding any conversation of Pete, Ali or Stephanie, as if mentioning their name, might somehow make us hurt again (I find it funny that all these people actually think that any of us have STOPPED hurting since they died).

Personally, one of the things that I’m most grateful for is the shower, silly as it sounds, because it truly is the one place in the house where I can go and be completely alone.  I take REALLY long showers, almost to the point of cold, because it is one of the few places that I go and cry as loudly as I want and no one hears me.  I know there have been full days and even one full week, that I can remember where I didn’t cry at all and at first I felt guilty about that, but eventually my therapist managed to finally get me to believe that smiling, being happy or not crying does not mean I have forgotten or that I’m “over it.”  It simply means that I’m starting to make peace with it and moving on a bit.  Once I decided to go back to school and have a specific goal in mind (wanting to use my tragedies to help others either avoid the same tragedy or help them get through it).  The people who know me the best say they haven’t seen me so focused and driven.  I think one of the main reasons for this is because I do not, under any circumstances, want my brother, niece and sister’s deaths to be in vain.  I am going to have something positive come out of this.  I’m moving in that direction as I get more and more involved in groups such as With Hope, the Amber Craig Memorial Foundation (www.withhopefoundation.org) and the AFSP (www.afsp.org) by becoming a policy advocate on the Federal and state levels.  I will be contacting my representatives in the Federal and State branches of government, advocating for the AFSP to get policies added and/or changed to make mental health illness and suicide prevention more public to save lives.

People that I know often tell me how strong I am my family thinks I’m the “rock” that’s holding us together.  The problem with having those “labels” makes it hard for me to publicly show or tell anyone how I’m really feeling.  I do have one friend who will listen to me over and over and over, will spend time with me even if I turn into a bawling lunatic and prays for me everyday.  Now I know there are many, many people in my church family who pray for me often.  But occasionally it strikes me, without any feelings of malice or contempt, that people really don’t ask me anymore how I’m doing?  They may say it in passing because that’s what you ask people, but I never get the impression or feeling that they really want to take the time to stand there and have me tell them exactly how I’m feeling.  I get that it makes people uncomfortable, which is why I’m grateful for my grief support group.

I found this picture last night and it completely summed up what I’ve felt now for a while.  I hope everyone has a wonderful Thanksgiving.

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When Looking for a Therapist, Find One That Specializes in Your Particular Need


After my brother, Pete, took his own life I had to start seeing a therapist.  Not because I wanted to make sense of this, which I did, I just eventually realized that it was never going to make sense to me.  That realization really threw me for a while.  I needed to seek therapy because I now had to figure out how to live without the one person, that I had literally spoken to every day since we both old enough to communicate.  My sister-in-law never disconnected his phone, but I have stopped myself from calling it 100 or more times a day.  Only slightly exaggerated.  Luckily I had a friend, who had a friend, who had a friend, who happened to be the founder of With Hope, the Amber Craig Memorial Foundation.  She got me in with a therapist for an assessment five days after the incident and then got grant approval for me to see the therapist twice a week starting August 23, 2012.  This was actually pretty fast, even for an emergency grant proposal.  I saw her twice a week for what seemed like forever, then once every other week or every week as my financed allowed.  One week ago, I discharged myself because I could no longer afford it, (even at more than 1/2 off) since I did not have a job and I was going to school.  This past week I have been pretty busy with school and assignments, but when I have had down time, it’s been REALLY DOWN….I’m hoping that this gets better, because I don’t want to think about it getting worse.  

When I started this project for school, I had to do five postings, have five things (websites, etc) that were not generated by me and then five things that were generated by me.  For the crown jewel of my 5, please see my post titled “Boy Did I Get a Rude Awakening…”  For a first time directing a video, I think it turned out really well.  

One of the other things that I did for this project was interview a therapist, Suzette Spence, M.A., LMFT, who specializes in working with issues of depression and grieving.  Her therapy focuses on working with family survivors of suicide, unexpected and traumatic death and the passing away of a loved one.   Suzette understands at a very deep and personal level herself, the immense energy and courage it takes to get through the grieving journey especially of a traumatic death of a loved one.  We sat down in her office one afternoon and she answered my questions in a very thoughtful and caring manner.  Here is the transcript of the first part of that interview:  

Q:  Why do you focus on family survivors of Suicide and how long have you been doing this? 

A;  I have been seeing survivors for approximately eight years.  I focus on this population because there is such a need for therapists who specialize in this area and who have real life experience to match the situation.  

Q:  Are there any other areas that could be focused on relating to sucide?

A:  Yes, one can pursue a certificate in Thanatology or a fellowship in Thanatology.  (writer’s note:  Thanatology investigates the mechanisms and forensic aspects of death, such as bodily changes that accompany death and the post-mortem period, as well as wider social aspects related to death.  See http://www.suicidology.org/home)

Q:  Survivors have a hard time telling people how their loved one died because of feelings of shame, guilty, etc.  What do you feel needs to be done in order to change this? 

A:  I believe that, socially, things are starting to change in a very positive way.  The general public is now starting to become more educated in mental health issues and people are now starting to understand that suicide is largely related to depression and mental illness (writer’s note:  This depression and/or other mental health illnesses may or may not have been diagnosed and/or treated) The stigma socially and religiously that survivors used to feel is lessening. 

Q:  Some people feel that is a person talks about suicide, they are just trying to get attention.  There is evidence that proves this is not true (see http://suicide.org/suicide-myths.html). In general, how do know if a person who talks about suicide is serious about doing it?  

A:  I start by asking if the person believes they have a future.  I also ask if they feel hopeful about their future.  Then, depending on their answer, I then ask if they are talking about suicide because they want an “escape from the pain” or if they truly want to end their life.  If it is escape from the pain that they respond with, we then focus on behavorial strategies to deal with the pain and depression.  However, if the person continues to talk about ending their life, I ask if they have a means and a plan.  I also ask about prior attempts and of course would need to have a complete mental history in their file.  If there is intent, a means and a plan, then hospitalization is usually required.  

Tomorrow, I will give you part two of this interview, as well as some other insights that Suzette shared with me regarding suicide.  

In the meantime if you, or anyone you know, is in need of a therapist who specializes in grief and/or family survivors of suicide, you can reach Suzette by calling (714) 801-6850.  Her office is located at 228 W Main Street, Tustin, CA  92780.  

In the meantime, take good care of you and those you love.  

Volunteering: An Unpaid Job Than Can be More Rewarding Than A Paid Job


Hello all,

So here it is,  my fourth blog for my journalism class.  So far I’ve included 2/5 things that I generated and one that someone else generated.  I’m on the right track.  Maybe….we shall see.

Today was a hard day for me.  I had class this morning – I still want to hurt the person who scheduled me for a 7:00 a.m. class after a class that ends at 10:00 p.m. Monday night.  However, with everything that has gone on in my family for the past year plus, I’m afraid that people who know me might take that action the wrong way.  Plus every time I try to hit myself, I flinch. Family suicide survivor humor?  At least it was my attempt at it.  After class, I came home and studied for the two tests I have next – the same Monday night/Tuesday morning scenario and then I went to have lunch with a dear friend after what seems like forever since we last saw each other outside of church.  That was fun and I always enjoy spending time with her.  She gives great advice.  From there I had to head south on the 5 freeway because Stephanie’s family memorial was this afternoon.  My oldest sister, Angelina just returned from Italy because Stephanie wished to be buried in the family cemetery at my villa in Florence.  It looks like the rest of the family will be going to Italy for the formal service there once all the students are out of school for their break.  I have six weeks off between semesters and I’m seriously considering spending all of it in the one place that I can totally relax.  Despite that the villa is where Pete took his life last year, I was there in December 2012-mid January 2013 and in that time, I can come to terms with a lot of it and before I left the country to come back to California, I was able in the room where ‘it’ happened.  Definitely one of the hardest things I have ever done, but with the help of a kitten who had hung around the villa (her, her mother and her siblings have been indoor residents since I left), I was able to get through that.  When I left, I instructed my cousins, who manage the property for me, to get rid of everything that was in the room and completely redo it.  While I am glad that my sister-in-law and I are getting along better, I hate that it’s because of another loss.  But pulling together as a family is definitely better than being torn apart.

Tomorrow will be a much better day.  I have an interview in Orange at the Mental Health Alliance of Orange County, where I have applied for a position as  a mentor.  It is an unpaid job, but sometimes volunteering can be very therapeutic.  There is something about serving others that takes your mind off of your own crap for a little while.  If I get this position, which I am pretty sure I will, I will be mentoring kids who come from broken homes and have been abused.  Part of the “group” that I plan to focus on after I’m done with school and have the degree that will actually lead to a job working with these kids.  I’m not sure if it will be a county position, or if I will be able to land a job with a foster organization.  I just know that after everything I’ve been through, I have much more empathy for these kids, because growing up, I was one of those kids with an abusive “father” who it turned out was  not my biological dad.  I’m pretty sure that there is no situation they could have experienced that I can’t relate too.  I’m looking forward to being a safe sounding board for these kids and most likely, in some small way by helping them to heal, they will also help me to heal.  That’s so much bigger than any paycheck I could ever bring home.

Boy did I get a rude awakening………


I read a quote once that said “NEVER get too comfortable, you’ll get a rude awakening.  In the past week, I can honestly say that truer words have never been spoken.  For those of you who have followed my short lived blog so far, and if you’re not, please start, you know that on August 1, 2012, my family and I lost my brother, Pete, to suicide and less than six months later, in January 24, 2013, we lost my niece, Alexandra (Ali), to suicide.  That has been a struggle for those of us left behind, as you can imagine.  On October 2, 2013, 14 months and 1 day since my brother took his life, and 8 months and 8 days after my niece took her life, my youngest sister, Stephanie, took her life.  To say that it shattered mine and my family’s world (again) was a major understatement.  We were all still seeing various therapists and were just barely starting the scratch the surface of what had happened to Pete and Ali…But Stephanie?!  NO ONE saw this one coming.  My middle sister, Vittoria found her and I, better than anyone else in the family understood exactly what she was going through and would be going through, since I had been on a Skype chat with Pete when he took his life.  On top of the grief of losing a loved one, she could count on flashbacks, nightmares, and other symptoms of PTSD.  As of the time of this writing, we are not any closer to finding out the “Why” as were on that night. We all know, of course, that we will probably never completely understand the “why” other than at the moment that they took their lives, all three of them JUST WANTED THEIR PAIN TO GO AWAY…which is different than wanting their lives to really end.  At that final second, they were literally not thinking clearly.  Since Stephanie’s death, my oldest sister, Angelina has discovered some unsent emails on Stephanie’s computer, one of which was to me.  She asked me if she should send it and I told her that eventually, yes, I wanted to read it, but I would let her know when.  Until then, it sits in the “waiting to send” folder.  Pete left me a note and I still haven’t read it.  My therapist has read it to me, but it was so soon afterward, that I don’t remember what it said.  No one else seen it.  My therapist keeps it, so no one “accidentally” finds it and reads it.

In the meantime, we all wake up each morning and try to move on as best as we can.  After Pete’s suicide, our family was torn apart, (mainly my sister-in-law and I) but slowly we have been working on our relationship and are actually doing pretty good, considering the issues that were between us.  We all talk everyday, sometimes more than once a day in addition to school, work, and other activities.  My sisters and my sister-in-law and I get together every Saturday for dinner….ABSOLUTELY NO EXCUSES.  It’s important to us to keep communicating.  I’ve become very active in the With Hope, the Amber Craig Memorial Foundation since Pete’s and Ali’s deaths and because this blog originated as a journalism assignment, With Hope’s founder/CEO, Annette Craig, was kind enough to tape what has turned into a PSA for With Hope (she will be putting on the With Hope website soon).  After three revisions to get it just right, we are finally happy with it.  Please share it anywhere you feel that it will get exposure.   Until next time, here is the final product.

http://www.youtube.com/watch?v=avd0dwtL6LQ