It Was Frightening

Gay Pride

A group advocating AIDS research marches down Fifth Avenue during the 14th annual Lesbian and Gay Pride parade in New York, June 27, 1983. This year’s parade is dedicated to victims of the incurable disease AIDS which primarily afflicts homosexual men. (AP Photo/Mario Suriani)

It was the 80’s and I was a teenager. All of eighteen when I learned of AIDS. I know it had been around before that but as a teenager who ran fast with a fast crowd we didn’t exactly pay attention to the news. In 1988 I was working full time for an upscale auto collision shop in New Jersey. More and more AIDS was being brought to the forefront as was the hysteria surrounding it and in all honesty , it was frightening. At the time I didn’t know anyone who had AIDS but that was about to change. 

One day a customer came in who happened to be the daughter of one of our biggest accounts. She had an auto wreck and needed her car fixed she also, had AIDS. Thats when the AIDS fear entered my life. No one in the shop would get in her car to get her insurance information out of it because she had bled in the car and everyone was afraid. I admit, at first I was a bit afraid myself but that night I went home and decided to do some research and learn more and so I did.. 

Next morning I tried in vain to educate everyone in the office and the shop that they had nothing to fear that once “it dries it dies” but my words fell on deaf ears. Finally I got so angry I called every male in the place (I worked with 15 men) a pansy ass and went into the car and got the information myself. Well, you would have thought I was going into an unknown world. They all stared at me like I was insane.. To their surprise. I survived, the car was fixed and me and Doretta (yes that was her name) became friends. 

Fast Forward a few years and I got sick with Lyme Disease. By 1994 I was too sick to work but I was also full of anxiety and frustrated to no end sitting home all the time sick and in pain just staring at the TV. Someone suggested that I should try volunteering to see what I could actually get my body to do. I did just that and I picked a soup kitchen dedicated to AIDS patients at a church about twenty minutes from my home. I went two times a week for about a month when my body decided it had enough.

I will tell you though, those two months were the most rewarding two months of my life. I got to meet these people that others were so afraid of. Turns out with education and compassion there is nothing to be afraid of. I got to see life through their eyes. I remember a woman who would come twice a week on my days and she was very sick. She didn’t have long to live. I would arrive and there she’d be sitting in her chair with her IV pole  usually alone reading a book. We would exchange a smile or two when I served her a meal and finally one day I sat down and we began to talk. I never asked her how she contracted AIDS because it didn’t matter.. She was no different from me except that she was dying faster than I.  I don’t know if I brought anything to the days she had left but she had given me a gift that has lasted these twenty some odd years and will until its my time to leave this earth. She allowed me to know her, to be kind to her and to be a friend to her. I will never forget her or her beautiful smile.

I will be forever grateful for my time in that soup kitchen and if I am ever able to volunteer again  I would do it all over the same way.

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The Lords Day

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How many of us can say we have someone like this? True, good friends are so rare in this life. If you are lucky enough to have a friend like this be sure to remember to pray for them every day and thank God for them every day because they are a gift to you from our Eternal Father..

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I’m Fine Thanks

i-am-fine-thanks

Yesterday I posted a video to my YouTube Channel for a health update on me. People on my channel are always asking and since it had been a while I thought it was time. 

In that video I talked about what my plan of action is and I may have made it sound like it’s simple but I am here to tell you, it’s not. The one thing I will do throughout is rely on the Lord to carry me, show me, heal me. I will Trust In Him. Sounds easy doesn’t it?

Some of the comments people left included how they believed I have a deep faith etc. I’d like to think I do but the truth is, for as much faith as I may have it’s not easy trusting in the Lord. It means giving up total control over things you believe you’ve always had control over when in reality you never had but we as humans think we control everything in our own lives. So because of this thinking we all seem to have, when it comes time to hand it back to the One who gave it to us to begin with there is resistance as if it were always ours. It feels like we are putting our lives in the hands of God (where it’s always been) but what will He do with it? What He’s always wanted to. Lead us, guide us. 

I know God will care for me and allow and permit what He sees fit to even if I don’t understand it but even knowing this and believing this will all my heart it’s still frightening. It’s still feels a little bit ‘unknown’. I thought in my video I also came off as having this “well it is what it is and will be and I’ll deal with it” frame of mind. This is mostly true but I will tell you I don’t always “deal” with it. As a matter of fact I’ve run from it for the last thirteen years and I am still as scared as I was when first diagnosed twenty – two years ago. 

Sometimes I think I make my life look like I am handling things just fine when it reality I don’t. Each day is a fight between my body and my mind. Each morning I wake up tired as if I haven’t slept at all when in fact I slept six or seven hours. I go to bed in pain and I wake up in pain. Some have said, ” I don’t know how you do it not having been able to eat a solid meal in thirteen years. My answer is always , “well you’d be surprised what you can get used to when you have no choice”.

That is also mostly true but the whole truth is, I am always hungry. I am always wanting a cheeseburger, a piece of pizza. I salivate sometimes when I finish cooking a meal for my husband. I go to bed hungry and I wake up hungry a lot of times. It’s not easy going to a friends or an event where here in America it’s centered around food, dinners, community breaking of the bread together. So yes, you can get used to something if you have no choice but it’s never 100% and it always bothers you. You always yearn to be able to do that which you can no longer do. You always wish and pray God will just swoop in and take it all away and you’ll wake up and be able to have a huge breakfast of eggs, bacon and toast.

Each day is filled with uncertainty because I may feel fine one moment and the very next my head is pounding and my body feels like it’s been run over by a bus and all the plans I had lined up are now sidelined because I need to rest.. At times, a lot of times, the simplest thing can be the hardest thing for me. Taking a shower, reading a book, walking, talking on the phone. All things most of us take for granted when we are well. 

Then there is the isolation that comes from being chronically ill. Friends are few and far between if there are any at all. There is no social life because those who are not ill stop sending invites because you either haven’t accepted in the past or canceled at the last minute (both because you were ill ) or finally because they don’t want to take on a friendship with someone who is ill all the time and can’t participate in the activities most can.

I know this isolation very well. When I first began getting sick some friends still stuck around but slowly, one by one they disappeared. When we moved from the North to the South meeting people was not easy. We have met a few people since moving and all of them with the exception of two have never once ever asked to stop by, invited me to their home, never suggested meeting for a while even in a park on a nice day just to sit and talk since I can’t walk distances. No one has ever offered any kind of help in the way of could they run an errand, do you need help in the house,  do we need dinner one night, can we offer to take you somewhere.  

The sad reality is, most people, are busy in their lives and too busy to stop to offer a kindness to one less fortunate. I don’t say this because I am bitter or angry. I am neither of those but I am, a realist. This is the sad truth about being chronically ill. Eventually you don’t feel part of the ‘normal’ world anymore. You are living in your own isolated world. An yes, it gets lonely but it seems to be the nature of the beast.

So you see, my attitude isn’t always on the up and up and my days aren’t always good. I can’t always just “push through it” and the health issue’s I do have frighten me, frustrate me and yes, make me feel alone a lot of the time. I know there are many out there who suffer in the same way so in spirit I am not alone but in reality I am.

There is much more I could write but I fear I have bored you long enough and I am not even sure if this post made any sense.

Until next time……

Blog Signture

I'm Fine Thanks

i-am-fine-thanks

Yesterday I posted a video to my YouTube Channel for a health update on me. People on my channel are always asking and since it had been a while I thought it was time. 

In that video I talked about what my plan of action is and I may have made it sound like it’s simple but I am here to tell you, it’s not. The one thing I will do throughout is rely on the Lord to carry me, show me, heal me. I will Trust In Him. Sounds easy doesn’t it?

Some of the comments people left included how they believed I have a deep faith etc. I’d like to think I do but the truth is, for as much faith as I may have it’s not easy trusting in the Lord. It means giving up total control over things you believe you’ve always had control over when in reality you never had but we as humans think we control everything in our own lives. So because of this thinking we all seem to have, when it comes time to hand it back to the One who gave it to us to begin with there is resistance as if it were always ours. It feels like we are putting our lives in the hands of God (where it’s always been) but what will He do with it? What He’s always wanted to. Lead us, guide us. 

I know God will care for me and allow and permit what He sees fit to even if I don’t understand it but even knowing this and believing this will all my heart it’s still frightening. It’s still feels a little bit ‘unknown’. I thought in my video I also came off as having this “well it is what it is and will be and I’ll deal with it” frame of mind. This is mostly true but I will tell you I don’t always “deal” with it. As a matter of fact I’ve run from it for the last thirteen years and I am still as scared as I was when first diagnosed twenty – two years ago. 

Sometimes I think I make my life look like I am handling things just fine when it reality I don’t. Each day is a fight between my body and my mind. Each morning I wake up tired as if I haven’t slept at all when in fact I slept six or seven hours. I go to bed in pain and I wake up in pain. Some have said, ” I don’t know how you do it not having been able to eat a solid meal in thirteen years. My answer is always , “well you’d be surprised what you can get used to when you have no choice”.

That is also mostly true but the whole truth is, I am always hungry. I am always wanting a cheeseburger, a piece of pizza. I salivate sometimes when I finish cooking a meal for my husband. I go to bed hungry and I wake up hungry a lot of times. It’s not easy going to a friends or an event where here in America it’s centered around food, dinners, community breaking of the bread together. So yes, you can get used to something if you have no choice but it’s never 100% and it always bothers you. You always yearn to be able to do that which you can no longer do. You always wish and pray God will just swoop in and take it all away and you’ll wake up and be able to have a huge breakfast of eggs, bacon and toast.

Each day is filled with uncertainty because I may feel fine one moment and the very next my head is pounding and my body feels like it’s been run over by a bus and all the plans I had lined up are now sidelined because I need to rest.. At times, a lot of times, the simplest thing can be the hardest thing for me. Taking a shower, reading a book, walking, talking on the phone. All things most of us take for granted when we are well. 

Then there is the isolation that comes from being chronically ill. Friends are few and far between if there are any at all. There is no social life because those who are not ill stop sending invites because you either haven’t accepted in the past or canceled at the last minute (both because you were ill ) or finally because they don’t want to take on a friendship with someone who is ill all the time and can’t participate in the activities most can.

I know this isolation very well. When I first began getting sick some friends still stuck around but slowly, one by one they disappeared. When we moved from the North to the South meeting people was not easy. We have met a few people since moving and all of them with the exception of two have never once ever asked to stop by, invited me to their home, never suggested meeting for a while even in a park on a nice day just to sit and talk since I can’t walk distances. No one has ever offered any kind of help in the way of could they run an errand, do you need help in the house,  do we need dinner one night, can we offer to take you somewhere.  

The sad reality is, most people, are busy in their lives and too busy to stop to offer a kindness to one less fortunate. I don’t say this because I am bitter or angry. I am neither of those but I am, a realist. This is the sad truth about being chronically ill. Eventually you don’t feel part of the ‘normal’ world anymore. You are living in your own isolated world. An yes, it gets lonely but it seems to be the nature of the beast.

So you see, my attitude isn’t always on the up and up and my days aren’t always good. I can’t always just “push through it” and the health issue’s I do have frighten me, frustrate me and yes, make me feel alone a lot of the time. I know there are many out there who suffer in the same way so in spirit I am not alone but in reality I am.

There is much more I could write but I fear I have bored you long enough and I am not even sure if this post made any sense.

Until next time……

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Online Friendships? Beware

106110-Fake-Friends

Hi everyone. Today I just wanted to share a very unpleasant experience I just had.

A few months ago I had met someone on social media. This person was always kind, always left nice comments and then this person began sending me gifts. I have to be honest, at first I was a little irked by this but I thought well I guess they are just a very nice person who likes to do nice things for others. We began talking a lot online and then we were on the phone almost every day, two and three times a day for the last few months. 

I……thought we were very close. More like sisters than friends. I shared very intimate details of my life with this person. During this time, the gifts kept coming and I kept saying thank you but please don’t spend any more money on me, don’t send me any more gifts,  it’s very nice but I don’t need things, our friendship is blessing enough and I meant it. I felt uncomfortable with all the gifts but regardless of how many times I said no I can’t accept it was given anyway and I didn’t want to send it back because I didn’t want to insult them. I should have listened to myself and done just that.

Well, sadly it turns out this person was not what they said they were.. After doing some thinking I realize I was manipulated. This person suddenly flipped out on me(at the worst time because I had, had a VERY bad morning that morning and they knew how upset I was because we spoke on the phone about it, so basically they kicked me when I was down) because they didn’t like the way I was living an accused me of being all kinds of things (which are not true) for no good reason.. The funny part is for all the criticism they threw at me they are simply no different than I am, act no different than I do with the exception of one aspect. I don’t try and buy people and then try to dictate to them how they should live and be. 

So because I am not what this person thinks I should be, and I am not living how this person thinks I should be they, after having been cruel with words, in an instant blocked me from their social media and cut me off at the knees like I never existed. Before I was blocked (for no good reason either) I responded in kind and was told that I was being hostile. Hostile??? Really??? NO, I was not hostile, I was hurt, very hurt and still am. I thought this person was a best friend, a sister. Two titles I do NOT give out easily, I opened my heart to them and I trusted them.

But even for as bad as I might feel about this all is not lost because I have learned a few valuable lessons. 

  1. If someone comes at you bearing gifts (especially when they don’t really know you), and that same someone keeps sending you gifts despite your constant telling them not too, and that same someone does not take no for an answer in reference to these gifts, be aware. Be VERY aware. Something isn’t right.. You’re being bought.

2.  As for myself, my hurt will heal (and my personal embarrassment at being so stupid) and I will not allow this to make me bitter but I will never again open my heart to an “online stranger”. I will never again trust an “online stranger” and I will leave them or keep them as two things. Acquaintances or strangers.

3. I will never fall victim again to allowing myself to be bought because now I know what it looks like and I will not allow myself to ever be manipulated by someone again by believing everything they tell me about themselves.

 To sum up, looking back now I see a pattern that I didn’t allow myself to see. This person told me about other “friendships” they had and how it was hard for them to trust anyone etc. and for one reason or another this person had cut them off( and it was always the fault of the other person).  So, for all of you who have “online only friends” be careful. Be very very careful. I should have known better. I’ve been online for over a decade and I’ve seen a lot I’ve just never been victim too it until now. I always took people at their word and I realize now that I can no longer do that. Do not believe everything someone tells you. People are not honest. They will paint themselves to be whoever or whatever they want you to believe or even scarier what they believe themselves to be…

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I am Angry! And Heart Broken At The Same Time

I don’t even know where to begin this post. All I know is I need to get these thoughts out of my head. I think thats what I need right now? I’m not even sure of that. I literally just found out two hours ago that someone I’ve known, love, loved, grew up around, rebelled at, confided in ,helped, defended, visited, left and stayed with people and relationships, jobs etc for on advice given since I was eleven years old is dead. You’re probably all confused but I”ll try and explain but I can tell you this won’t be a short post.

Some of you may have known of or heard of depending on your age a person named Tony Ayala Jr also known as Antonio Ayala Jr also known as his boxing moniker “El Torito” (little bull). He was a famous boxer in the early, very early 80’s on the rise to superstardom. He was a Mike Tyson before there was a Mike Tyson. He was unbeatable, unstoppable in the ring. Boxing that is. You can learn more here : Tony Ayala Jr.

This is what Tony looked like at eighteen when I met him. Remember I was eleven years old at the time.

tony12

You’re probably wondering what an eleven year old is doing around an eighteen year old and if you went to the above link what an eleven year old was doing around an eighteen year old boxing star in prison and accused of rape right? Here’s how it happened. At the time of Tony’s arrest, his girlfriend at the time was working with my mom. When he was arrested the feds seized all his money and property and that left Lisa, his girlfriend at the time no where to live and with no money. My mom offered to let her come and live with us until she could figure out what to do. When she moved in, Tony would call the house from prison to speak with her and she thought it would be a good idea if I talked to him. After getting my moms permission (yeah don’t down my mom for her decision. That one decision allowed an amazing person to come into my life) I began talking to Tony on the phone when he’d call and I would draw him pictures and mail them to him. (remember, I was 11 so yeah, I still drew and colored in coloring books)

Eventually Lisa, moved back to Texas and moved on with her life. Tony was convicted in New Jersey and sentenced to thirty five years. My communication with him never stopped. I literally grew up with him. He was only eighteen, me eleven and he went through my entire teen years with me, helping me with all the mistakes I was making and did make. The day I turned eighteen I was finally allowed to make my own decision to go and meet him in person on visitors day at the prison. Of course I went.  From then on I visited almost every weekend until I was twenty four and too sick to keep going. When I was twenty six they transferred him to another prison much farther away from me so, we were back to letters and phone calls.

In 2000 Tony was finally released from prison in New Jersey and went back to his home town of San Antonio Texas (which was a huge mistake). He was getting ready to get back in the ring and again, still at the age of 33 almost 34 he still had what it took to be dynamite in the ring and was ontop again but, as it always happened in his life he got in trouble again in 2004 and Texas threw the book at him for parole violation. They slammed the door shut on him for the next ten years.

Tony in 2001

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tony2001

As it always happened when he got locked up, we resumed letters and phone calls. When I say letters an phone calls, I mean two letters per week and many phone calls. Tony spent most of his life behind bars. When he would get out he would disappear for a while and then resurface. That was just his way and I accepted that and him. By now you’re probably thinking there’s something seriously wrong with me to have been involved with a person all my life who was a violent man who raped a woman at knife point and a drug addict. On one level I don’t disagree with your thoughts but on many many more levels I completely and totally disagree and if you’re interested I’ll tell you why.

Tony was a very troubled tortured soul. From  day one he never had a chance. The adults around him cared about one thing and one thing only. Tony becoming a boxing star, making money and getting them out of poverty and the barrio of San Antonio. Anything else that was happening to him didn’t seem to matter and it was ignored and or denied. He was molested when he was a small boy by uncles, he was doing drugs and drinking alcohol by the age of nine. He was not allowed to finish school either. The objective of his father (God rest his soul) was the ring. By the time Tony was thirteen he was a full fledged drug addict and alcoholic. Now, does that excuse his behavior? No but it sure in hell explains it. This kid had zero chance of a normal happy life before he even began because those around him who were supposed to protect, love and nurture him turned away .

To me, I never saw the angry young man. I never saw the drug addict, the alcoholic, the violent man he could be. Why didn’t I see it? Because he NEVER showed that side to me. EVER. If you ever asked me who I would feel safest with in this entire world my answer would have been Tony. All the rotten things the media and boxing fans called him (those who didn’t know him one bit) I never saw. He never projected at me. This horrible person they made him to be was the same person who in my teens got me through my awkward stage, my first true love, my first devastating break up, my first job, my problems at home. When I hit my twenties he got me through my first marriage and divorce, the beginning of my illness (always positive and loving), I went to visit Tony so many times in prison I can’t even count them. If you’ve never been inside a prison I can tell you from first hand experience it’s not a place you “want” to go. It’s frightening and most of the inmates are as frightening as things you see in your nightmares but the minute I would see him come down from his cell block I knew I was safe. No one would dare trouble me.

You’re probably also wondering if there was ever anything romantic between Tony and I .. All I can say to that is…yes and then no..I will tell you though, I have been kissed many times in my life but the most perfect , sweetest, loving kiss I ever received was from a man in prison. But, for as nice as it was ( I can still remember it to this day) we both agreed there was something wrong. We were too close.  We grew up together. He in prison me on the outside. After the initial pleasure we both felt from that kiss wore off we quickly agreed it felt like kissing a sibling. It would never work. So, it began and ended there never to resurrected again.

So you see, you may think Im insane but what I saw, the Tony I knew, the person Tony gave me, and what he gave me was himself. The real him. The man no one really ever knew and who was that? An extremely intelligent (got his high school diploma three times along with a college degree in prison) person, a boy who grew into a man with a heart that could, at times, when he would let it happen, love deeply and passionately. A man who would protect those he loved with his own life but, he was also a very troubled man. He had demons that he couldn’t get past. No matter how much counseling he got no matter how much he tried and I’ve never seen anyone try harder to get beyond the damage that had been done to him He would get out of prison go back to all the same places, make the same mistakes and the heroin would come along and rip everything he worked so hard for right out of his grasp.

Tony in 2015

tony1The devil finally grabbed him for the last time in May of this year. He put the heroin within his reach and Tony, making the same mistakes he always did, grabbed it and it was the last time. In May of this year he was found in the gym he co owned with his brothers slumped over, dead from an overdose.

Why am I writing about this now? Because I just found out. Tony started pushing everyone away a while back. Me, his mother, brothers, etc etc. I knew he was in trouble (Im sure he knew too) but he just pushed farther and farther away until finally no one could get in touch with him and when you did he didn’t want you “in his face”. So, I did all I could do. I let him go and prayed. I got angry and changed my phone number, ripped up ten years of letters and just prayed. His mother tried to contact me but she couldn’t. I regret having changed my number but I did it because I couldn’t handle it anymore. I knew he was headed down that same bad road again and after thirty four years I couldn’t go down it with him anymore. In all honesty I fully expected he would end up in prison again and spend the rest of his life there. I never, ever expected an overdose would take him. Why I didnt expect that, I have no idea. Thats pretty stupid when I think about it at the moment. Maybe I just held out hope he would turn it around because I know how smart he was. Problem is, when he was on the outside he didn’t know how to live life. He knew nothing but drugs and chaos. Truth is, without prison, he was lost. No structure etc.

So, tonight as I sit here writing this post, I cry and I get mad. I cry some more and I get angry some more. Mostly angry. Why? Im angry that he didn’t have the ability to love himself. Im angry that he didn’t know how to live a normal life. Im angry that those around him from day one destroyed him and watched him self destroy and did nothing. I’m angry that he will never have another chance to get it right. I am angry that the people I love most keep dying leaving me here without them. I’m angry that the one person in this whole big screwed up world, who knew me better than anyone on this planet, including my husband and my mother (that is saying something) is gone. Tony knew me more than anyone ever did or ever will. We had no secrets and any secrets we had from the world we confided in each other. I am angry that heroin has taken yet another person I love.. I am angry that , he is gone.

I am simply…. hurting and angry….

Tony 2015

Tony 2014