Day One

Unrestful night, things aren't normal in the environment, but it is a new day.

Drive 3/4 of a mile to other house, pick up Dan, bring him here so he can use internet connection (had he not had a laptop of his own, he would have been SOL) and phone.

I get phone work done, make contact with the Best Medical Facility on the Planet and arrange to have medical releases for Dan's records to be faxed from his previous care providers. I start in on the noon meal while Dan is sitting in my office (which is really the dining room) and calling Social Security, updating his "new" address, doing who knows what online and calling God knows who. Of course, his cell phone network doesn't work out here in the cornfields of good old Iowa.

He comes in the kitchen and asks, "What do you take for pain? My legs are hurting."

I was waiting for that classic question and it sure didn't take long at all. The icing is now being put on the proverbial cake so, I hand him OTC ibuprofen. I tell him, "Take 3". That satisfies him. He goes back to whatever he was doing, I continue to fix a meal.

Noon arrives, the men come in to eat, we get the noon meal done and I decide to take him to town with me, to the grocery store, get him a few more groceries and I needed to get chicken feed and other stuff. I turn him loose in the grocery store, telling him, "get what you need for several days" because I'm trying to impress upon him, we don't make 56 mile round trips to town every other day.

On the way out of the grocery store, I run into an old friend whom I've not seen for at least 2 years- in fact, not since I was on treatment. She's in a motorized wheelchair, smiling and genuinely glad to see me, as I am to see her. I take the time to visit (as I normally do with people I know in my community) and make it a point to REALLY take some time, because it is obvious that Dan is beginning to lose patience. He's sitting on the bench at the front of the store, with his head on the cart, behaving like a child that just figured out that the world doesn't revolve around him. I refuse to rush my old friend, chatting with her, learning that she is gearing up for a kidney transplant and also made it to the Best Clinic on the Planet, so we had much to chat about!

Dan is pouting. He's out of his element, his lack of social skills are rearing up and he's not handling my attention not being focused on him. I have, at this point, realized that this is going to only get worse, because no doubt, he's going to eventually start acting out.

During the ride home, he mentions, "When I looked at your pictures on your site, I thought you spent a lot of time downloading photos from the internet, I didn't realize that they were taken by you". I found that statement really strange and it stood out when something occurred later that evening.

We get back home, I drop him off with his food, tell him I'll be back later on that evening. Husband and I return later, before dark and he's got all the windows (even the ones lacking screens) wide open, the screen door is propped open with a shovel. The vacuum cleaner is sitting outside on the patio and I said, "You need to close this house up before you have every single insect on the farm in here".

He claims it smells "musty". I reply, "Turn on the air". I shut the windows and doors. Husband and I visit for a little bit, making small talk, he shows us a "picture" of his grandson, who doesn't resemble his ethnic heritage in the least. Dan is of Hispanic/Mexican descent, both sides and this "boy" he's showing us a photo of isn't even close.  He only has ONE photo of ONE grandchild, he has been claiming he has 6 grandchildren, 4 children and he doesn't have any other photos of these people. My radar is working overtime.

Wake up, you fool!

Dan's arrival time was 12n. I'm running a bit late (okay, I was literally dragging my feet, my instincts have kicked in and I'm not feeling so good about this) and during the days before his arrival, I'm letting a few people know what we were doing and of course, I'm getting the "Wow, that is so kind of you" and other nice admiration's. It wasn't exactly what I expected, nor wanted- I was fairly focused on the fact we were going to try and help another get the same deserved treatment and care that I had received, the intent was honorable, but altruism ALWAYS has a motive and that is a very simple one- the motive is based in how it makes the altruist "feel" about their own self-esteem.  I wasn't thinking about that at the time, yet I was getting some nice accolades, except one person sent me a fair warning- and that still sticks in my mind.

Up to this point, Dan has told me:

1. He doesn't drink coffee
2. He doesn't watch TV, claiming it's mindless crap.
3. He's got degrees in Economics and Business.
4. He worries about "spreading the disease".
5. He's worried about what he will do if "he gets lonely".
6. He has trouble eating (a clue I wasn't paying attention to)
7. He has terrible diarrhea (like I needed to know, but wait- this was an obvious clue!)

Yeah, the flags are flying and I'm on my way to pick him up at the airport, thinking, "I've made a huge, huge mistake".

I can't find a parking space in the short term lot to save my life- I'm 20 minutes late, calling Dan's cell, he's not answering and I'm figuring the plane is late. I get in the airport, the flight HAS arrived, I have him paged, no show. He's not on the scheduled flight. I'm thinking, "Leave now, walk away from this", still- I wait in line at the check-in counter at the appropriate airline and the woman checks the computer after I give her his name, she is unable to verify if he's on the next flight, but tells me the next flight comes in such and such gate in 50 more minutes.

Plane lands, my cell rings and he's walking out of the boarding area- I'm checking this out thinking, "Oh shit, Albuquerque Junkie". I wanted to run screaming from that airport, demand that TSA put him right back on the next plane out of there, to anywhere!

We meet again, oh happy, happy- he's just so happy he's here and geez, why didn't you make your scheduled flight? I wait outside the mens room, with his laptop, for at least 15 minutes, calling my friend back home, telling her, "This isn't good, I wasn't thinking, I made a horrible mistake." He's still in the bathroom, I'm on the phone and he's still in the bathroom, for 20 minutes.

He comes out, I ask him if he's eaten. "No, I only had 2 cups of coffee". Flag starts flying again..... hmmm, diabetic, no food, only coffee, stated to me several times that he doesn't drink coffee. Okay. It's only 1pm........

"Did you take your insulin?"

"No, not yet".

Oh dear GAWD! So, the radar is in high gear, I get him to the car, he injects his insulin, just like a junkie pro (something about how they hold that syringe- it's subtle, but oh man, I'm really starting to think,  "how I can ditch this dude?"). I'm looking at his arms, the tracks are there and geez, it's completely obvious that Dan has been at "this" for a long, long time. I don't think I've seen tracks that bad in over 30 years and I know what I see.

He's dressed all in black and we aren't talking "goth", he just looks like a dressed up junkie, with a yarmulke on his head. We bug out of the airport and I'm looking for a decent place to feed him, I find a Ruby Tuesday, pull in to park and he says, "I don't like to wear my yarmulke in a restaurant, people look and think I'm not eating kosher". This statement just blows me away. I respond with an abrupt, "I think that's your problem, I seriously doubt anyone even notices."

Yeppers, I have a real live problem on my hands and I'm already thinking, this isn't going to work.

I've already contacted the best medical facility in the world, gone in the back door- getting to the correct department and started the process to get him seen. I've emailed my own doctor, to obtain primary care and got a roadblock on that deal- serious shortage, not taking any new patients. I can deal with that, but I'm getting things lined up with the correct people at the clinic where he really needs to be seen and I'm having serious thoughts about this, because his logic is so freakin' skewed.

We leave the restaurant, I'm looking at his horrendously out of style dress shoes, thinking "these are NOT going to work in a rural environment", so I take him to Dillards- walk right to the shoe department (womens, oops!) and he immediately starts chatting up the saleswomen. I'm gagging, seriously gagging, looking for a shovel to choke on.

I take him downstairs to the mens shoe department, he picks out a pair that I would expect a 70 year old man to choose, not a man of 53- but that's fine, they're on sale and affordable. Run that card, it's only money! We go back upstairs to leave and he gravitates towards the high end cosmetics counter, talking to the nice looking young, unassuming woman- and I'm doing the "jaw-drop". I'm floored, embarrassed and I want to sneak out of that store and vanish. I'm not kidding. I mean, this dude is NOT that attractive- not anymore. He just looks like an old, burnt out junkie and he's trying to pick up chicks half his age.

I drag him away from the counter, telling him, "We really need to leave", get him in the car and head out for home.

Every 15 minutes or so, he's looking at himself in the visor mirror- after the 10th time, I'm finally asking, "Why do you keep looking in the mirror at yourself? He says, "I'm looking at my eyes".

"What's wrong with your eyes?" No answer.

I'm asking questions about his children, making conversation, killing time and driving like a bat out of hell to get home- he's evasive, gives me vague answers, being blatantly secretive. Especially when I hone in on the situation with his youngest son, who he claims is 25, staying with his mother, whom he doesn't care for and he's already asked if his son could come up here, too. (BIG FLAG)

He finally admits, the 25 year old son is sitting in jail, on drug charges. And he wants this kid to join him here with us? I don't think so!

We finally pull in, late- it's almost dark and he meets my husband, he's being very low-key and cooperative. We take him to the other house, where fresh, clean linens await- all the comforts that are necessary and leave for the night. I have some time alone to talk to my husband and tell him about all the odd behavior and I don't sleep very well. My radar is still in high gear.

Making Connection

So, I've been leading up to the story of my latest blunder and how this lesson in Altruism slapped me upside my thick head.

As I stated previously, my profile on a networking site is getting a LOT of hits, messages and guestbook signatures. Okay, this is cool, so on a whim, I typed in Dan's name (remember: Drug Addled Narcissist), only at this point, I had NO clue at all how drug addled he really was, yet maybe I just wasn't paying attention? Not to mention he's a textbook narcissist.... oh, that stuff is coming, but there's more to this and it will get better......

I find a duplicate profile for Dan, same high school and now there's a photo, a "story" and messages on his public bulletin board. Hmmm..... and within those messages, he's conversing with someone who is obviously related to him and mentions he's received a new liver.

I can hardly stand myself at this point. I'm honing in on this, "ah, another HVC case- and it's someone I know (yeah, right)!

I email him through the site, no response for a day or so, so I email the person he conversed with- of course, stupid, stupid me never looked at the dates of those entries, which were last year. I send a message to what turns out to be his first cousin, who is also from Albuquerque, same age, yadda yadda..... basically tell her that I'd like to get into contact with him and questioned her about his "new liver", she emails back immediately, only stating that he's been quite ill and will try and get a number for him. Cool.........

A few emails later, she sends me his number. I call it, I get a voice mail, I leave a short message and my phone rings. It's him and I'm my usual, "hi, how are ya, yeah, I'm doing great, married, happy and what's up with this new liver deal?"

In a course of a 5 minute explanation from him about "liver cancer", I tell him about my experience with HepC and the truth comes out. Geez, just how did I know this? So, he proceeds to tell me about his transplant that occurred the same year I was diagnosed and treated (interestingly enough, he's getting a new liver and I'm being diagnosed within a 2 week time frame) and I'm asking him, why haven't you attempted treatment? The excuses are rolling out, from "my family doesn't know I have the disease" to "I know I have to treat, my doctor that did my transplant wanted me to" and all I'm hearing is "I can't do it".

So, I ascertain he's had a transplant, that took place in NYC, he's got 4 grown children, 3 different mothers, never married, recurrent HCV, diabetes, insulin-dependent and he's scared to death of treatment. I'm also learning that he has been living in NYC (where's he's a member of an Orthodox Jewish Community), went to Seattle (where he says he has a daughter and 2 grandchildren) and while he was there, his vehicle, laptop and everything he had with him when he left NYC was stolen from him, so he goes back to Albuquerque, with his youngest son-

Of course, some of us do in fact, return to "home" when things aren't going well in our lives. Even if the environment left us with negative memories, for some reason, some STILL return home. On a side note, I wouldn't return there in a box.

I noted during his calls, which were becoming quite frequent, that he's got a cough, he's complaining of other maladies (gastro-intestinal problems) and I'm just thinking, "it's the HCV and the havoc that is creating". I'm also wondering why a cradle Catholic has converted to Judaism and well, I will say this- after finally seeing him after 34 years, things did start falling into place, but I will add to that later. He's asking me about his cough and chest congestion, I'm suggesting getting some antibiotics, he's asking me about other maladies and I'm telling him, "you need to treat for the HCV".

Then, I start going into my "Pay it Forward" mindset, thinking I can help this human, who is running out of time to treat (transplant patients have a window of 1-5 years to treat for the recurrent HCV) and I'm really encouraging this dude to seek treatment.

Husband and I discuss what I've "found" and the fact that he's sick, needs help and appears to have no help in obtaining treatment, much less the stability/place/support to go through with this. Husband and I agree that we have the means, ie; another home that could be used for him to reside in, I could try and get him to the best clinic on the planet and maybe, just maybe- we could help him. NOT change him, that was never a thought, but help him out for a year, yes. I had learned he was on SSI (disability and medicaid), so I wasn't too concerned about financing this deal- putting a person in our other home isn't going to be that expensive and if he wanted a phone/internet connection, he could pay for it.

The idea is discussed with Dan, who thinks for about 2 seconds and says, "I'd be a fool to pass up this opportunity".

I agree to purchase a plane ticket to get him to an airport 4.5 hours away, he picks the day, the flight and time of departure. So, during the 4 days or so of getting ready for his arrival, I'm still communicating with his cousin, who sends me a warning a day too late:

"My mom (Dan's Aunt) thinks he's still into drugs, because he's going into the house across from hers and they are known drug dealers".

Me, fighting my natural cynicism/skepticism, is convincing myself that "well, maybe he's just visiting there and after all, it is the old neighborhood". Yep, my 48 week treatment with a toxic cocktail did indeed impair my most astute instincts. I truly need to seek help.

Meanwhile, the emails and phone calls are going back and forth- I'm asking more questions, getting vague answers and literally laid out the "deal" as far as what we would offer and what we expected in return:

 I get contact numbers for his immediate family, namely his eldest son, whom he states is still in NYC.

During the time frame he's still in Albuquerque, he's emailing me his daughter's number, whom I call and she never returns the call (gee, subtle hint here?), his brother's number, whom I decide I really don't need to call, yet and he's still never given me contact information for his son in NYC, whom he claims has his act together the best, aside from the daughter in Albuquerque, who is graduating from nursing school.

The day before he's scheduled to fly out, he's calling me from Albuquerque, telling me exactly where he's standing, demographically speaking (I'm really starting to think this is getting weird) and that night, he calls and says the "friend" he went to visit fell and broke her hip. And he's still not gotten any antibiotics for his obvious cough and congestion..........

And I'm getting apprehensive, by the minute. I'm still communicating, via phone and email with his cousin and starting to get really worried I've made a huge mistake, I'm telling her what he's telling me and not telling me, his evasiveness, the vague answers, his current "antics" and she's getting really worried that this is a mistake, but the ticket is purchased and I'm dragging my feet getting out the door to drive to get him at the airport.

Next up:

Dan, Dan, the Junkie Man

Advocacy, HepC and Social Networking

Or, how these things combined can be a recipe for disaster.

My profile on a social networking site had been getting a serious amount of “hits”, requests and messages this year. Most I was just observing, some were quite genuine and I kept my communications at arm’s length. I have a fairly unique last (maiden) name, so who knows, maybe that was the reason that I was getting more attention than I have in years past, because I’ve been a member of this particular site since 2000.

I am also actively engaged in advocacy and support on a forum that is specific to Hepatitis C, supporting others with information, moral support and general socialization. The forum in particular is fairly stringent in not allowing “junk science” to be advocated and for the most part, it is fairly sedate, being run by people like myself, who have treated successfully and are empathic towards the newly diagnosed or their beginning journey of treating for the disease. Knowledge and experience is a powerful and valuable in supporting those that are facing the disease, treatment or just wanting some information. The people that run the site have all managed to beat the disease, treating successfully and are very knowledgeable, keeping up with the latest news, trials and other information that is important to those that need to know what is in store for them. They're really a great bunch of people and truly have the fortitude to continue to post over and over again, support that cannot be measured.

I’m very open with my experiences, look back on much of my treatment phase as what I tend to describe as a bad dream- it is a brutal treatment, but I had the best of care, from the best medical facility in the world and many, many doors opened for me- due to my experience. I whined, complained and trooped through treatment the best I could, took an experimental protease inhibitor that was on trial, fought to be the experimental test subject (along with 250 others in the U.S.) in the second trial on human subjects. I didn’t find this drug trial by accident, either- all my time on the internet wasn’t spent looking for people from my past, much of it was spent researching the disease, treatment and basically scaring myself to death.

I managed to get my consult at the best medical facility in the world, within 11 days of being diagnosed, had all the preliminary testing done prior to getting my treatment prescriptions signed, called a friend who is a psychiatrist, because all the research I was doing is telling me that I’m going to need my mood monitored and for the love of God, I’m an emotional wreck anyway. I was due to start treating for the disease in June of 2006, but found a trial that was open for enrollment, talked to my nurse about the study and then proceeded to pester the living daylights out of a nurse who would play a vital role in getting me through treatment and attaining SVR (sustained viral response).

Okay, I know I’m really dragging this story out, but there is a method to this madness- and that is summarily defined as: If I can do it, anyone can. This is simply not true. Some people never can make it successfully through this treatment, some have attempted/succeeded in committing suicide, some get so sick from the sides they have to discontinue and some simply just do not respond to treatment. I just managed to take my support and advocacy too far, bringing it right to my home, my life and fortunately- figured it out quickly enough so it never affected my family or community.

Only 50% of people with HCV will treat successfully- the most common genotype is the most difficult to treat, the other two genotypes have an 80% success rate and have to do ½ the length of time treating. Those of us that have Geno1a, get to do the full 48 weeks of one of the top 3 most brutal treatments for disease.

So, the next entry, I’ll introduce you to the Drug Addled Narcissist and how he came into our lives.

Preface

For the sake of privacy, I won’t use real names-

"Dan" is the person that I had one of the most profound, eye-opening experiences with and the reason I’m choosing the name “Dan” is because “Drug-Addled Narcissist” seems most fitting. So, in the following entries, you, the reader, will eventually understand not only why I've chosen this name, not to mention how I came to my lesson in Altruism and meeting face to face with someone with a serious personality disorder. I'm not a psychiatrist, but I do recognize when someone is seriously abnormal.

When one finds out they are seriously sick, with a disease- just about everyone goes back to their past. Don’t ask me why this behavior seems to be common, but networking sites do provide a base in which to start that weird behavior of finding people from your past. Only because most of us (or we hope) have moved on from our childhoods, become adults, had our own families, successes and failures- when faced with a serious illness- we go back to where it all started and connecting with some people from our past seems to be important to us.

Cutting your modem connection the moment you are diagnosed with a serious illness might be a wise idea.

For some stupid reason, specific people stand out to you- not because you were “tight” or had very close relationships. Even their oddities and reasons you rationalize as to why you never kept in touch might be tapping you, one will still seek them out, for whatever esoteric or mundane reason- many of us do in fact, seek people out from our childhood.

I spent an incredible amount of time online, searching for specific individuals I had not had ANY contact with when I was diagnosed back in March of 2006- even spending small amounts of money, subscribing to different sites, searching for archived obituaries, even managing to connect with relatives that I had not spoken to since I was a small child. There is something about “connecting” or bridging that past that maybe only a shrink could define, yet I believe it is part of the healing process- coming to terms with what got you to where you are at now.

Dan and I had a “friendly”, "hang out with on occasion" relationship during my teenage years- we are both the same age, didn’t run in the same circles, yet we had known each other and occasionally hung out together on and off from about the age of 14-19 years of age. The last time I saw him was before I left home, which is Albuquerque, NM. Drug capital of the U.S., meanest streets on the planet (in my opinion and I have lived in larger cities in my adulthood). It is by far the most politically corrupt state next to Illinois- most police departments look angelic compared to the APD, not to mention the County Mounties. Even the State Police are something left to be desired. In other words, New Mexico is not the Land of Enchantment, it’s the Land of Entrapment- and I left in 1976, at the age of 20, leaving what I knew would eventually be my demise. Obviously, I’m still here to write about it, so my demise has not been met, yet.

I’ll never forget that moment in time, of seeing Dan and walking away from him- he was calling out to me, “Come back, come back”- which to encapsulate the scenario, I just got sick of his “neediness” and realized at that point that he was running in circles. I remember he was staying at the dormitory at UNM, claiming he was starting law school. His room was bare- no real possessions adorning the room, not even linens on the bed, curtains on the windows. I saw him one time, briefly after that- he had gotten an apartment, which I accepted an invitation to visit him there and that environment was also void of any personal adornments. Which even in my drug induced haze, I still had the clarity to think, “Something is wrong here”.

I never got high with Dan- for some odd reason- never even smoked a joint- most of our hanging out consisted of stupid, inane conversations which amounted to me finally tiring of his strange logic and perceptions of life in general. For the better part, Dan is a fairly intelligent person- not all the conversations were that stupid- we did share some common threads, a history so to speak- and if anything, when I was a "runaway" juvenile, Dan did help me out when I had nowhere to go, sneaking me into the his family’s garage that was made into a apartment, vacant- but the basics were there and he’d also sneak me food from his family’s dinner table. So, yes- in essence, he helped me when I was in need of shelter and food.

So, there was a very basic curiosity as to what happened to Dan over the years and even though I found his name on a networking site, there was nothing in the profile, no response to a message I sent to him and I didn’t pursue it any longer. Until recently……..

A Valuable Lesson in Altruism

Altruism
1. Unselfish regard for or devotion to the welfare of others.
2. Behavior by a animal that is not beneficial to or may be harmful to itself but that it benefits others of its species.

Recently, I had the intense, distasteful and financial experience of coming face to face with the very concept of Altruism. Pure intent was in the forefront, I truly wanted to help another that was obviously in poor health, was facing a health issue that does indeed have a treatment available. I had faced this same disease 2 years ago and managed to beat out a virus that is affecting approximately 5 million Americans, most of whom do not even realize they are infected.

What I didn't bargain for was the fact that I had a very distressing experience with a true Narcissist . For as astute as I normally think I am, I sure bought into this situation, hook, line and managed to cut off the sinker before it got worse.

What most do not understand or examine when their "altruistic" nature rears it's ugly head is the fact that when we offer to help someone that is in dire need of something, we refuse to look at our own interests of the matter at hand, ie: how will it make me feel to help this person? Yes, the very basis of any altruistic motive is very selfish in the roots of the behavior. It is very irrational, does not truly serve the motive, but only sets the stage for the altruist's need for praise and admiration.

All of us, as humans, that have one ounce of compassion for another, will experience some type of altruism at some point in their lives and the true, rational compassionate personality will know immediately when they must detach, because when the motive starts backfiring, or to put it in this perspective: The person you are trying to pull out of the water into the boat and they keep pulling you in the water to drown with them. it's time to get a serious clue.

Another lesson involved in all of this was: Leave the past where it belongs. In the past.
I had left a very troubled, challenged youth behind over 34 years ago, have continued to move forward, some setbacks here and there, but never, ever returned to "where it all began" for any real length of time. Mainly because every time I did return physically to that place, I was affected in such an adverse manner, staying away from it all was a priority in my rational self-interest.

Altruism bit me really good, simply because instead of going back to that place of "where it all began", I bring the past right to my present. Maybe I just needed a hard lesson about pulling people into my tiny little boat of a normal, stable life. I knew better, I just didn't listen to my rational conscience. Nope, not me- the crusader and advocate for testing, treatment and supporting others with a disease that is indeed treatable, I almost sacrificed our own livelihood, finances and well-being all in the name of Altruism.

I have to admit, I sought this out, literally went "looking for it" and even though I saw, read and heard all the warning signs, I didn't PAY ATTENTION. Some warnings came too late and I still wanted to think positive- and the lesson in that is:

Never, ever trust your own judgment when doubt is raised, in any form.

My personality is quite cynical in nature, I'm always being told, "You're being negative" and criticized for my less than sunny, bright attitude when it comes to many things. I do not consider myself to be negative- I'm a realist, for crying out loud. Unfortunately, my realistic sense of the world around me miserably failed, due to a moment of altruism.

I must have some strange Karma- I do manage to see through others motives or their facade quite easily- for the better part, I remain unaffected, but when I see something I do not like, I react. Coming unglued is a better definition, because when I'm staring straight at something that I know is threatening everything in my life, the very thing I have left behind, something that has the potential to destroy my world, my well-being or even my family and friends- I literally react in a most adverse manner.

And the fact that I was fooled, even for a very short time (5 LONG days), just pisses me off.

My next post will tell the story and at this point, my lessons were learned- yet, the fat lady isn't singing yet, because as soon as that "event" was removed from my world, another situation came my way and the entire thing has virtually "flipped". But, I'm a bit more wiser for it and yes- sometimes we just have to be human, recognize when there is a true injustice happening to another and lend some support.

So, stay tuned...... my next post will tell the gory details of Altruism, Narcissistic personality disorder and my rattling experience in dealing with an impossible, sick human being. 

What's wrong with this picture???

My husband and I took our often sought-after Sunday sabbatical away from the farm last weekend and as usual, I packed the camera gear.

There is a billboard here in Iowa on one of our frequently traveled routes we use that has gained my attention, but I've never stopped to grab the shot, so here it is:




So, what's wrong with this picture?