If That Hadn’t Happened……


IF THAT HADN’T HAPPENED:

If that hadn’t happened, I wouldn’t be sitting here feeling guilty because I was the last one to talk to you and I never had a clue.  I should have picked up something in the tone of your voice or in your  words that would have indicated what you were planning to do almost as soon as we got off the phone.

If that hadn’t happened, the rest of us wouldn’t be planning a trip to say goodbye.

If that hadn’t happened, I wouldn’t be so pissed off at you for not talking to me and telling me what was going on and what you were planning, when that had to be the point of your call to me in the first place….why wouldn’t you talk to me? Why didn’t you let me get you help, you knew I would know what to do and would have moved heaven and earth to help you.  Why didn’t you trust me enough to tell me?

If that hadn’t happened, I wouldn’t be missing you so much.  I wouldn’t be dreading every breath I had to take and praying that every one would be my last.

If that hadn’t happened, I wouldn’t be staying away from everyone because I can only hide what’s going on inside me for very short periods of time, and to those who know me really well, I can’t hide it at all.

If that hadn’t happened, I wouldn’t regret having made the promise that I made to the one person who has helped me most through all of this, the one person who has always had my back, the one person I believe truly cares about me.

If that hadn’t happened, I wouldn’t be feeling like this……I would not be thinking about jumping into the abyss.

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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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It’s About Time – Maybe……Depends on Whether or Not the ACA Gets This One Right.


I just found an article online from the New York Post (one of the few papers that I read that I give any kind of credibility to) that the Obama Administration is about to release regulations that will require insurers to cover care for mental health and addiction in the same way as it covers any other type of illness.  These rules will apply to almost all forms of insurance.  In my opinion, this is where it can start to get a little tricky; for example if Medicaid is excluded from having to cover these new regulations, it could be almost the same as having no regulations at all, as many people with serious addictions and/or mental illness cannot hold jobs because of their illnesses, therefore they do not have top rate health insurance in place.  We will have to wait and see once the regulations are released by the administration and scrutinized and over analyzed by reporters, congressman, senators, etc.  Overall, this is the ONLY thing related to “Obamacare” that I have been on board with.  Overall, I’m not a big fan of socialized medicine (for elective items), as it has been proven time and time again that it takes about 10-15 years of REALLY, REALLY BAD, before socialized medicine starts to become “tolerable.”  As it stands now, the roll out has been so botched up, that I find it hard to believe that come January 1, 2014, everything will be running smoothly.  In the meantime, please read the article in the New York Times below.  

http://www.nytimes.com/2013/11/08/us/politics/rules-to-require-equal-coverage-for-mental-ills.html?smid=pl-share

 

 

 

 

Journalism 110 – What I want to do when I “grow up.”


So, I have to do some blog posts for my journalism class, preferably discussing the job that I eventually desire…I must say I’m glad that there are some “older” adults besides me in my class.  Right now, my goal is to get a B.A. in Human Services and, ultimately, a Master in Social Work.  Somewhere before the B.A. is completed, but after I have taken enough of the “AA-T” requirements, I would like to take the required test to be an alcohol/drug counselor, that way I’ll have at least some income to help me pay for the graduate and post-graduate degrees.  Eventually, I want to somehow be involved with family survivors of suicide, which if you have read my blog before, you know is very close to my heart on a personal level.  The day after my brother’s suicide, I was connected with the With Hope, the Amber Craig Memorial Foundation, which is a non-profit focusing on teen suicide prevention through education and mental health awareness.  With Hope helped me get connected with a psychologist (who works a lot with family survivors of suicide) within 5 days for an assessment and I actually starting seeing the therapist, ironically enough on my brother’s birthday.  My therapist has been instrumental in helping me realize, among other things, that my brother wasn’t “crazy” just depressed.  

Anyway, since August 2012, I have been involved with the With Hope Foundation, and I think everyone needs to know the signs and symptoms of depression, which by itself can help to save a life.  Also, if someone talks about committing suicide, they aren’t just saying it to get attention…they are actually reaching out in one of the few ways they know now…DON’T IGNORE IT…TELL SOMEONE!!  Check out the With Hope website.  It has a lot of information, not just for teens or anyone with a teen, but for anyone who loves someone.  You may be surprised at what you learn in just five minutes on this website.  

 

http://www.WithHopeFoundation.org