If Nothing Else, There Is Hope

Written as a MySpace blog post 10.5 years ago, approximately 3 years before I became seriously ill with the disease that took me down and now has me bedridden. I can’t believe it’s been a decade already.

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The Legacy of Hope   6/2/07

 

When I went to the Chandler library to cruise for movies to check out for the weekend, the selections were pretty slim.  The Poirot series that usually appears on PBS didn’t hold any appeal, and “Show Boat” wasn’t looking any better.  I picked up a documentary called “Legacy,” about a multi-generational family of single moms trying to escape the inner city projects of Chicago.

The narration is provided by one of the teenage girls who lives with her grandmother, mother, aunt, six cousins and four siblings.  Within the first 10 minutes of the film and after the grandmother gives her first interview about living in the projects, one of the nephews – the one that showed the most academic promise and stability, and was looked up to by family and neighbors alike – was shot dead in the street.  The filmmaker chose to follow this family for a total of five years after this devastating murder, which included the boy’s mother joining and completing her 5th addiction treatment program, the narrator’s mother getting a stable job after being a welfare recipient since the age of 16, and the grandmother finally qualifying for her own house after a generous donation from an area businessman who saw the news story of the boy being shot.  The narrator was the first in her family to complete a high school education and receive her diploma.

This was a difficult story on many levels.  It is not dissimilar to watching episodes of “Intervention” on A&E.  Nearly every person of my immediate and extended family is or was an addict; I saw and learned things that no child should.  Every person in my father’s family with the exception of my uncle died young, including my father.  This month will also mark the violent death 12 years ago [as of 2007] of my aunt at the hands of her boyfriend.

Poverty was also a strong factor in my childhood years.  My mother nearly died when I was five after she contracted a bacterial infection, and was bedridden for three months.  Add that to the strain of my own medical bills, with my terrible asthma attacks, allergies, and numerous bouts of pneumonia and bronchitis….and no health insurance.  “Preventative care” was impossible to consider.  We stood in line for milk and cheese.  We were also issued these awful frozen fish portions, which were breaded fillets of cod with a hunk of cheese wrapped in as well.  Luckily an uncle was a manager at General Mills and would give us test samples of various foods that they were developing to mass market.  It was a treat when we once got “Bonkers” – if you remember those, they were rolls of peanut butter with rice crispies and chocolate chips on the outside.  Mostly, though, we got these horrendous breakfast bars – vanilla, strawberry, and chocolate – that had the taste of chalk and the consistency of a doorstop.  We ate them because we had to.  [It is no mystery that impoverished people are overweight because the least expensive food is the most fattening and unhealthiest fare you can conjure up.]

One Christmas there was no money for presents.  My mom contacted a local charity that gave us $14 each to spend on gifts, took us shopping, and had a wrapping party afterwards.  Mom still had a sense of humor about it – somehow she convinced me to tell her what I got her, saying “Oh, I’ll forget, I promise.  Just whisper it in my ear.”  Of course I told her.

It is also no mystery that being poor is stressful, humiliating and limiting. It is easy to say “Why don’t they just ___________ ?”.  Right now, as a nation in general, we have a very them-vs.-us mentality; every man for himself. If you are lucky enough to have grown up in a household that never really had to struggle to survive, it is much more difficult for you to understand how this cycle of poverty continues through generations.  But instead of saying “Why don’t they ________?”, why don’t you ___________ to help?  Because it’s their problem, not yours.  I’m not saying that we have to give $10 to the people with signs at the end of freeway exit ramps.  Can’t we lend a hand before it gets to that point?  It may not be you or your family right now, but it could be in the future.  Medical expenses alone are becoming outrageous, even for those covered under company policies, and one major illness could be financially devastating.  Half of all bankruptcies filed are attributed to medical bills.  For some reason, we as a society have associated medical bills with outright laziness, when it couldn’t be further from the truth.

There were elements in this film that I could not relate to.  My extended family never bonded to get through the hard times.  When my aunt was killed, my father had to admit to the detectives that he “never really socialized with her” and didn’t know her boyfriend was violent.  Her death was heartbreaking, but instead of offering each other support, fights broke out over stupid things like who would get her dresser and bed.

These women in the documentary also had strong faith in God, which was never a part of my upbringing.  Hearing “God will get us through this” and “by the grace of God” was like they were speaking in tongues to me.  Faith is not something I practice.  Even if we’re talking about people in general, or work, or good health, or anything for that matter, I never sit back and say “I have faith”.  Instead, I have hard work and critical thinking skills.  If I don’t do for myself, I have no business sitting back and waiting for something, or someone, to take care of everything for me. 

Yet, there is still the legacy of hope.  We need to be reminded that despite our circumstances, we can rise above with dignity and flourish.  You or I may have been in a bad place 10, 20, 25 years ago, but that doesn’t mean we have to be there now.  Good deeds should be handed out to strangers, friends and family alike – you may need their help one day.

My mom has recently started worrying that she made too many mistakes and bad decisions when raising my sister and I.  It’s quite a time delay, since we are both in our mid-thirties and turned out pretty straight.  I don’t hold anything against her.  She also taught us love and affection, dignity, and the joy of survival. 

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Valentine’s Day is 80% Off

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I’m going to do a little update on Walks with Wood (https://thesickandthedating.com/2015/06/10/hello-world/) because as I stated before, I snoop to keep track of exes. Though he and I no longer live in the same state, he did try to contact me out of the blue at the end of March of 2015 because he wanted sympathy for driving drunk without his seat belt and crashing his car (and his head in the process).

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Diamond Dust Necklace (I’m assuming. He claimed he spent “a lot” on it.) WwW gave it to me on Feb. 11, 2015.

So this is their post confirming one year:

WWWandOphelia

The last time we saw each other was February 28th when he showed up late and drunk. Either Ophelia has no idea there was an overlap, or she has forgiven him because he is a project to fix. Either way she has not had it easy; he told me his friends assumed that I was ugly without even meeting me. That didn’t exactly endear them (or him) to me. Maybe they are kinder to her because she was already part of the circle.

In other news, Walgreen’s has all of their candy on deep discount. Unfortunately, just like my love life, I am being forced to clean up my diet before it maims or kills me, so no sugar, soy, gluten or dairy. Welcome to February 15th, where the chocolate is 80% off, and so are the relationships.

Speak Easy

Last week Friday, February 5th, Nikki (http://ilivebreathe.com/) and I had our first chat on Blab. The agenda was to talk about toxic people, the diverse challenges we face when interacting with them, and when to let them go. The recording went much longer than we planned at 1 hour 45 minutes, but if you are interested, here is a link to the show:

https://blab.im/82740adeac204a028576bc288ef25703

We decided to come back this week with another show, and this time the topic is self-care. What do you do to bring yourself back from the pit of despair? Do you allow yourself to laugh or cry? If you have seen the movie “Amelie” (French with subtitles), you know that each character is assigned a list of things that seems like a very simple pleasure. Amelie’s father likes to take all of his tools out of the toolbox, clean out the box, and very carefully put the tools back in. A patron at the eatery carries a mini tape recorder with him everywhere, and then records unusual laughs. Amelie likes to stick her hands into barrels of dried peas.

What do you do to make yourself feel better about your circumstances?

Join us on Blab for a discussion on self-care; we’ll start at 6 pm EST/3 pm PST Friday, February 12th.

https://blab.im/nikkiseefeldt-sickadilly-chat-2-self-care-strategies-rare-dis-disability-chronic-illness

I Can’t Feel My Face!

I had two live-in boyfriends during my time in Cincinnati. The second one was Drummer #1, introduced by the guy who was in charge of our servers at the law firm. Apparently Drummer #1 had a weakness for women from Minnesota, with our light-colored hair and blue eyes (except mine are green). In theory he seemed like a good match for me too because of his musical leanings – besides drums he also played guitar – and he was a tech guy, which was my new field at that time.

I still remember our first date vividly. Drummer #1 was very tall (6’3″) with a big, toothy grin, deep-set blue eyes, short brown hair and a flannel shirt. He was very, very nervous about meeting me. We went on a double date with my friends, and we started off sitting across from each other at a crappy table with bad vinyl chairs while a band set up. An hour later the band was in full force and Drummer #1 managed to down four shots of Jaegermeister and two Jack & Cokes. He got up to go to the bathroom and when he returned, he sat down next to me instead of across from me, started rubbing my back and then poked his cheeks and said, “I can’t feel my face! I can’t feel my face!” Before the night was done he had four more Jack & Cokes.

I agreed to go out with him again, even though the drinking wasn’t ideal for a first date. I knew it was his nerves. Plus he kept telling me how cute I was.

It was another one of those things that turned into us spending loads of time together immediately. After the third date when he found out where I lived, he would throw pebbles and sometimes even dimes and pennies at my apartment window to surprise me and let him in. He was living with his parents at the time. After about eight months, Drummer #1 and I moved in together.

I didn’t have the easiest time with meeting his parents. I never went over to his house, he just met me out or came and picked me up. One time during the summer we were at a blues festival and Drummer #1 knew his parents were there as well, and they wanted to meet me, so we set off through the crowd looking for them. We walked back and forth and back and forth in mobs of people but weren’t able to find them, and I had no idea who to look for anyway. However, his parents saw us and didn’t call out to us every time we passed – because, as it turned out, his mother thought I was too fat and ugly for him. (Disclaimer: I was around size 8-10, pretty darned okay by today’s standards.) When they invited me to join them for Christmas that year, I absolutely did not want to go, but I did anyway. His parents ended up loving me.

Anyway, up to that point, Drummer #1 had been an irresponsible bill payer and so I had to have all of the utilities put into my name when we moved in together to avoid having to pay large deposits. For the first year that we were together he was one of the sole tech guys for a small manufacturing company. At this point my hair was falling out with a vengeance. He always wore a blue fleece pullover to work and every day he managed to pick up thousands of my blonde hairs on it like he was wearing velcro. At one point the guys he worked with asked if there was something wrong with me based solely on the volume of my hair that would show up on his clothes.

After the first year Drummer #1 switched to a job at the University of Cincinnati. For some of his time there he happened to work with a doctor who was researching cures for alopecia universalis. He would come home and tell me about seeing others like me who were examined under a magnifying glass so they could be determined to be the most extreme hairless cases for the studies. I still would never qualify because no matter what falls out I manage to retain a few sprouts of hair on my big toes. And for some of the time, Drummer #1 said that he was being sent down to the “hole” – some underground network where he would have to suit up in a big yellow suit for 2-3 days while he ran programs. He also claimed to work with some cops and even some FBI agents.

Drummer #1 made the mistake once of claiming that I was not doing enough to keep my hair. You know that old tired tune of “Why don’t you just _____?” like everyone else is the expert on your body? I made him go with me once for a session where the dermatologist injected each patch with a combination of Lidocaine to numb my head after the shots were done and prednisone to inhibit the white blood cells from taking over my hair follicles. Every session would be about 75 injections; that time, Drummer #1 said, with big eyes, that he could see the doctor flicking the needle up slightly after each injection so it looked as if he was tearing my skin a bit every time. After that, Drummer #1 never told me I wasn’t doing enough.

I finally started wearing wigs when I knew trying to keep my hair or grow new stuff was completely hopeless. At one point I purchased a styrofoam head with a super long neck so the longer wigs wouldn’t rest on the counter tops when I took them off. I would perch the head form and hair on the back of the toilet at night. Every morning for a week, Drummer #1 was so out of it that he would scream when he got out of the shower because he thought someone had sneaked into the bathroom while he was bathing. I would lay in bed nearly pissing myself laughing.

After a few months of living together, things started to slip with the bill paying for Drummer #1. We began receiving calls that our electricity and water were going to be shut off for non-payment and every time I’d have to hurry and pay them, with him promising to investigate why his payments hadn’t been processed. He claimed to be clueless as to why there always seemed to be lost payments.

Then one day in June we were supposed to be flying back to Minnesota for my 10th high school reunion. The flight was out of Columbus, a good hour and a half away, and at night, so I told Drummer #1 what time he had to be home from work in order for us to catch the plane on time. When the time rolled around, he was nowhere to be found. This was prior to the time of cell phones, so I had to call his office. When I got no answer, I called campus security and asked them to cruise around to see if his car was there. After striking out again, I opened up his top dresser drawer where I knew he put all of his receipts and mail. I was stunned to find six months worth of bills in there, all unopened, including all of the utility bills he had told me he had paid. I was incredibly angry and still panicked about not being able to make our flight in time.

The kicker, though, was when I went to get the mail before trying his work phone again, I received my credit card bill with another nasty surprise. When I had been sick the month before with strep throat and stuck in bed on my birthday, he had taken my credit card and charged up hundreds of dollars. I was LIVID.

Drummer #1 showed up an hour late at home and not ready for the trip at all. He hurriedly threw things into a bag. The entire drive up to Columbus I only had my demon voice to use on him. I told him that if he touched the mail in any way including just taking it out of the mailbox, I would get a post office box and he would have to wait for me to give him his mail. No more hiding and lying.  I hated him.

Five months later Drummer #1 made arrangements to buy a car through a program with the University; the payments would come out of his check directly so he wouldn’t have to worry about making timely payments. However, “something” happened where payments were still missed and his car ended up being impounded. Drummer #1 promised to pay me back but it required about $1200 to get his car back.

I had vowed to return to the southwestern U.S. about two years into our relationship. I didn’t feel any real connection with the city and the winters were depressing. I told Drummer #1 that I was moving with or without him. He seemed enthusiastic about a major change and we even took a trip out to Arizona to check it out. When we were driving back from the Grand Canyon towards Phoenix, we were stunned by a quadruple rainbow that glowed across the sky. I know now that it’s an extremely rare phenomenon, and believe me when I say that even truckers pulled over on the highway so they could snap pictures of these four perfect arcs filling the sky. I took it as a sign that I was making the right move.

When we returned from the trip, I went into working and saving mode. I put in about 70-80 hours between two workplaces to make sure I’d have money for the big move. Drummer #1, however, was still not being responsible for his bills and wasn’t making any effort to pay me back.

In January of 2003 I received a strange phone call from a girl who addressed me by name and informed me that she had been fucking Drummer #1 for at least a year. I kept calm and asked him about it when he returned from work. He said that the girl was calling all of his friends and trying to make their girlfriends freak out. I had no way to verify this because I didn’t know any of the girlfriends.

In July 2003, Drummer #1 missed more car payments. I was at the end of my rope. I told him he was on his own with figuring it out because I had to save money to move. Then in September, I received a call from the landlord who told me that he knew I was leaving, but Drummer #1 asked if he could stay on. Drummer #1 never had any intention of moving.

I bagged up all of his belongings in garbage bags and threw it all to the bottom entryway stairs. I went over to his parents’ house and told them he would need a new place to live. They revealed to me that he had borrowed $1600 from them, telling them it was to pay me back. None of the money made it to me, though. His parents told me that he had been a pathological liar his whole life and they hoped that living with me would have cured him of that. I wish that they would not have remained so loyal to their son and instead warned me.

My friend’s dad, an attorney, wrote a letter of intention to file suit if he didn’t pay me back all of the money by October 29th. On October 29th he appeared at my workplace with a cashier’s check for the entire amount he owed me, nearly $5,000.

I used that money to pay for the moving van and my new apartment in Phoenix.