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Guilt

Guilt can be a deadly weapon.

This is her story:

I’ve never talked about it…to anyone but a therapist. And, I have never said anything on my own blog about it. But personally, I think a blog that allows you to declare you are “Not Mommy of the Year” is the place to do it, right?

I carry a lot of guilt, dating back to July 19, 2009.

You see, I allowed my son – my first born & my pride & joy, ride and sometimes even drive a golf cart. That cart – it almost took his life.

I’ll pause here and let that sink in for a moment…

I knowingly allowed my son to operate and ride in a motorized vehicle that was not a) safe b) age appropriate or c) SAFE. What kind of mom does that?

Our children rely on us for many things. But one of the key things they rely on us for is safety. And, if they can’t rely on us, who can they rely on?

What kind of mother looks the other way as grandpa and son drive by (at a speed that is slightly faster than I would prefer for myself) in a golf cart, of all things.

And, this wasn’t your average golf cart. It was as suped up machine, with larger than normal wheels and a tow package. And my son, he isn’t just a normal son. He’s MY son.

I have cried a thousand tears. And made a thousand promises. And worried years of my life away since July 19. I have spent countless hours lying in bed with him, rubbing his hair and praying softly as he slept.

I have prayed for forgiveness. For healing. For peace.

And yet, I still don’t feel like I have paid for my sins.

I can still remember hearing the helicopter circle overhead and thinking – I could have prevented this.  Let me be the first to tell you – there is nothing more painful to your heart than to think that you could have prevented your own child’s pain. his bloodshed. his near death.

And you didn’t.

I failed him.

I failed him in my most important duty as a mother. I failed to protect him.

This is the single most prominent factor holding me back from healing. And I know that. And, it is something I continue to work on.

Because,  you see…I carry guilt with me.

I carry it in my heart.

And I see it everyday.

The Big Break

I’m 33 years old. I have issues with PTSD, anxiety and depression. My Conversion Disorder is in remission, and I was a T-7/8 paraplegic for four years.

Anyway.

I’ve had a boyfriend for four years, a personal best for me! We’ve been really trying hard the last year, went to couples counselling and everything. It just didn’t work.

When I moved in, I put all my household stuff in storage, saying if things are good in a year, I’ll get rid of it. He owned the apartment and had all the household stuff one needs.

For four years, we were a We.

It’s done now, mutually, yet I feel so scared. Six days left in the month. I can stay here longer but it hurts, for both of us. Neither of us will start the healing process while living together. I want out.

I want a little place of my own, where I can cry all I need.

Right now, I have nowhere to go, hoping one of the two places I applied to accepts me. I have no household stuff …bed, microwave, broom, dishes, little and big things, I don’t have any of it.

I’m just so fucking scared. No Us, no place of my own, no pot to cook in. I feel almost agoraphobic. Too many possibilities. I just want my own little place that’s warm and safe

No One Wants Me

Lyme disease is one of the hardest infections to treat.

This is her story:

I saw my neurologist today. She told me “no one wants Lyme disease.” She was referring to doctors, though it is an appropriate statement on many levels. I’ve been trying to get in to see the infectious disease doctor here. The infectious disease (ID) society is the overriding medical body who makes Lyme recommendations for diagnosis and treatment.

When I call the receptionist at the ID doc’s office (his name is Sky Blue, he he), however, she makes even getting into see him a nightmare. I have been trying to make an appointment for two months. *They* aren’t sure he treats Lyme (uh, he should). *They* told me to get a referral. I did. *They* still weren’t sure the doc could see me. *They* told me someone would call me after talking to him.

*They* didn’t. My neurologist said no doctor wants Lyme.

I can understand.

Lyme disease is so full of controversy. On one side is the IDSA (Infectious Disease Society of America- though don’t let the “America” fool you; many other countries follow their guidelines). They post that Lyme is an easily diagnosed and treated disease. They believe that even if you have late stage Lyme (which causes neurological problems and arthritis-like symptoms), it is treatable with four weeks of antibiotics.

On the other side is ILADS (International Lyme and Associated Diseases Society). They believe that Lyme is much more complex and is very difficult to diagnose and treat. They argue that many people with late stage lyme are “seronegative” (meaning their bloodwork for Lyme is negative). They also believe that the Lyme bacteria is present in several forms (spirochete, cyst, L-form). They believe in long-term, high dose antibiotic therapy (meaning a year or more). The IDSA maintains that there are no empirically sound studies showing that long-term antibiotics are more effective than a placebo. ILADS and associated organizations say that those studies haven’t studied true long-term therapy (i.e. twelve weeks instead of a year or two).

There are many patients who believe that the IDSA is in bed with the insurance companies, denying treatment for chronic Lyme beyond the 28 day criteria. I find this argument to be a bit bogus considering insurance covers things like chemo without a grand conspiracy [this isn’t to say I don’t think there are legitimate problems with our insurance system!]. But I do think the IDSA has blinders on and seems unwilling to say that it’s possible that they don’t know. I think they should encourage more studies, more science rather than telling the other side (a very vocal side) to fuck off.

I fall somewhere in the middle. I believe in science. I believe in studies. I also believe in medicine that hasn’t been proven. My dad’s life was saved because of a clinical trial for recurrent lymphoma. The medicine did NOT get FDA approval. But it cured my dad. Above the science, above the controversy, I want to get better. I am 27, and I want to live a healthy life. While it might sound nice, sitting around my house while it gets messier and messier watching old Showtime television series isn’t the way I like to spend my time. My bed and I have a relationship that is frankly a bit unhealthy (which reminds me I should probably wash my sheets a little more often). I want to write. I want to build brands. I want to engage. I don’t want to curse my computer screen because it gives me double vision. Frankly I don’t care about the ILADS/IDSA bullshit.

I just want my life back.

Which means I have to care. I have to do a lot of research. I read a lot of journal articles and scientific papers (usually zoomed in to 200% or with the font on the internet increased). I try to make informed decisions. I come up with my own hypotheses. I’m pretty sure my doctors hate me because I have more theories than they do and seem maybe slightly crazy with a hint of medical OCD. My labs at the moment are fine. I look completely healthy on paper. Except I’m not.

And no one wants me. If the doctors treat without confirmed lab tests (which were supposed to be used for surveillance not diagnosis) they risk their medical licenses (google Dr. Jones). The doctors seem afraid of this as as a diagnosis (but are free to give me migraine meds without a confirmed lab workup!). To see my doctor in Seattle I had to sign a form that I understood this was an experimental treatment protocol. That doctor continues to treat me. And I probably shouldn’t have gone on this expensive medical dead-end. But the problem is when things happen here (maybe unrelated to Lyme) I don’t have anyone to go see, which makes me a thousand times more likely to go to the ER instead of just calling my primary care doc.

I know this is confusing. I tried to explain it as best I could, and I explained things as I see it (so if you disagree, this is how I view the controversy).

If you have more questions, I can try my best to answer them.

Still Surviving-ish. AKA I Survived You Part 2

Well, it’s been a long while since I’ve revisited this, and rather a lot has happened…

When last we met, dear readers, your hero was making it work, and getting by. So much change …so much upheaval.

When I left off, I mentioned that I was married, but we need to go back to the beginning of that relationship, as the background is important. I hope you’ll all bear with me again; getting these stories out is much like excising vital organs for me. It’s a painful process, and I’m very protective of them, and by extension, of myself.

My divorce from the wife in the first story was final in 2006. Around that time, I became reacquainted with an old friend, Becca. We caught up over the course of a couple of days, and later had dinner. At the end of the evening, she kissed me. This was confusing, as she had always been fairly …”butch,” for lack of a better term. We had a conversation about it, and she told me that her sexuality was uncertain; she was still figuring it out.

We continued to see one another for a few months, and anytime things would become more intense, she’d slow it down. This was fine with me, as I was still pretty vulnerable from my marriage. We had a good time, and I always had a sort of unspoken understanding that we were going to end up together.

Things changed.

Eventually, it came to the point that she was just using me for “stuff,” and I distanced myself from her. All well and good, but it was still hurtful.

In 2007, I met a woman who changed everything. Long distance again. (Yes, I know.) She was intelligent and well-educated and fun. We would visit one another around every other weekend. Lots of activities, and the intimacy was there, too.

Then, she started shopping for a home in my hometown. It meant so much to me that she was willing to uproot herself so that I could be near my family. We found a wonderful fixer-upper for a good price, and started working toward buying it.

Those of you who have bought a home know that it is a very stressful process, and the stress took its toll on her immensely. She wasn’t the fun-loving Jen I had gotten to know, anymore. Still, I stuck it out, but eventually, I wanted the “old Jen” back badly enough that I told her to let the house go. She did, and I hoped for things to go back to normal.

Shortly after that, her father became seriously ill, and she was heavily stressed over that. Still no good old Jen. I was right beside her through his surgery and recovery, still hoping for a return of what we used to have.

She bought a house in her hometown, which stressed her out even more.

I proposed to her in 2009, and she said yes. Surprise, surprise, planning a wedding is very stressful as well. I was at wits end by this point, but I was committed to giving this relationship the best possible chance.

We married in 2010, and my daughter and I moved into the house she had bought. Stress. I was in a new city, in a job I hated, with no friends, and nobody to talk to but the woman who was increasingly frustrated with me. She had never lived with anyone before, and had all her ducks firmly in a row, and suddenly she had a husband and a stepchild, in her space, all the time.

We enrolled my daughter in the private school that Jen had gone to as a child. The people there were horrible and elitist, and my daughter acted out. The intimacy Jen and I had went away. First, Jen started sleeping on a mattress on the floor in the bedroom, because she said it was better for her back. Later, she started sleeping in the guest bedroom, because she couldn’t stand the sight of me. She worked nights, and I worked days, so we managed to barely see one another. I would come home from work and do my best to drink myself into a stupor, and she would constantly berate me about the things she needed help with.

I am not a smart man. If you want me to dust the dining room, just say, “medic77, dust the dining room for me,” and I will do it. If you want me to clean the guest bathroom, just say so, and it will be done. Jen, however, believed that I should be able to see what needed done and take the initiative. It wasn’t an easy concept for me, but I won’t make excuses.

She would catch me in the middle of a project she had given me, and ask me to, for instance, mow the lawn. Ten minutes later, once I had gotten to a stopping place in project one, I would go outside to find her mowing the lawn herself, and mad about it. It made me crazy. She was a therapist, so she KNEW it made me crazy. I turned into a “yeller.” I’m not proud, but we would have epic screaming matches while my daughter cowered in her bedroom and wished for it to be over. Jen threatened to have me committed.

In February of 2011, after living under the same roof for less than nine months, we separated, and I came back to Ohio. Jen later told me she was mad about that, too. She thought I should have gotten an apartment where she was. It just wasn’t possible. I didn’t have any savings, and I had only worked my current job or a few months. It just wasn’t possible.

Back in Ohio, I went back to work, and got a second job with state benefits, which eventually became my only job. Jen and I weren’t interested in communication at that point, so I was very low.

We went through cycles of talking and silence. I had friends, but Jen always suspected me of being in secret relationships with the female ones. It was just another lack of faith. A couple of years ago, after we had been separated almost longer then we were together, I met a girl at work, Lorrie, and we started a relationship. I was happy.

One night, Lorrie and I were laying in bed talking, and I heard a noise. Suddenly, Jen was standing in the bedroom. It was as bad as it sounds, but it could have been worse. At least we were clothed and only talking. Still, not long after that, our divorce moved forward and was final.

I am still with Lorrie, but our intimacy is gone. We haven’t had sex in months. She says she loves me, but she just isn’t interested in sex. I feel as though I did something to cause it. She doesn’t touch me. She doesn’t kiss me unless I initiate it. She SAYS that if I want sex, I should just say so and do it, but it doesn’t feel right to me. I feel like sex should be a union; a collaboration. Not just, “Hey, hold still a minute.”

I know I’ve got depression and anxiety, but I can’t help wondering just what it is that makes me so forgettable. Why I can’t seem to find anyone who just WANTS me.

So, yeah. I’m surviving, but just.

Noonday Demons

A woman who has major depressive disorder decides to go back onto her medication:

This is her story:

Today, I decided to go back on anti-depressants. This is a battle I’ve waged for years; do I really need them, do they really help, are the side effects worth it, am I just a loser who can’t deal with life’s vagaries.

Last weekend I drafted a post that contained the line, I feel like a bucket brimming with tears, and the slightest, inevitable tremble of the earth makes them overflow. It’s an inelegant metaphor, but worse, it’s a pretty clear symptom that things are not going well. It’s partly a bad birthday, partly the break-up, partly some harsh health news. It’s mostly, if I’m honest, cyclical, recurrent, my noonday demon.

“Grief is depression in proportion to circumstance; depression is grief out of proportion to circumstance.”
— Andrew Solomon

This is a family tradition; at the cousins’ table at last weekend’s wedding, we raised a toast to Lexapro and discussed having a candy bowl of all our meds on the coffee table of the rental house we’ll share at the next wedding. It’s funny, but it isn’t. Undiagnosed and untreated depression, manifested as alcoholism and other self-destructive behavior, blackens the family history like soot after a fire. Not everyone, not all the time, but too many, too often.

For me, it begins with a lack of resilience. My normal ability to adapt diminishes and diminishes until I can’t remember that I ever had it. Then, despite the pride I take in being self-aware, I start to judge my good life unworthy and tell myself that my unhappiness, my deep profound malaise that rips the joy out of each moment and shows me only the glaring photo-negative of each happy event, is actually the only sane and measured response to a terrible world and my own failures to strive against the terribleness. That’s the most insidious part, for me; my beautiful brain turns against me, whispering that I am correct in my assessment of my own awfulness and that I deserve to feel bereft, that my sadness is borne from clearly seeing the world and my own bottom-rung place in it. That the life that stretches before me will always be this bleak and hopeless, and that it’s my fault, and that I’m forever lost.

I mostly retain enough self-awareness to know how first-world self-pitying this sounds to anyone but me, but knowing that doesn’t combat my secret belief that it’s true.

My first episode of depression hit me during my fourth year of college. I was living by myself, and working two jobs, and so sad and overwhelmed that I began skipping classes to sleep and sleep, until I got so far behind that I saw no option but to quit. The rueful backstory here is that my parents had already yanked me out of my beloved city and school once, for financial reasons, and I had fought bitterly to return to the life I thought was rightfully mine. And then I ruined it. No one, myself included, ever thought my actions might be aberrant because I was ill; I was just a failure who fucked it all up.

“…a part of depression is that it touches cognition. That you are having a breakdown does not mean that your life isn’t a mess. If there are issues you have successfully skirted or avoided for years, they come cropping back up and stare you full in the face, and one aspect of depression is a deep knowledge that the comforting doctors who assure you that your judgment is bad are wrong. You are in touch with the real terribleness of your life. You can accept rationally that later, after the medication sets in, you will be better able to deal with the terribleness, but you will not be free of it. When you are depressed, the past and future are absorbed entirely by the present moment, as in the world of a three-year-old. You cannot remember a time when you felt better, at least not clearly; and you certainly cannot imagine a future time when you will feel better.”
— Andrew Solomon (The Noonday Demon: An Atlas of Depression)

I’ve tried and tried to write about the beginnings of this last trough, when my sister’s boyfriend was shot and nearly killed on our front porch in 2006. Well, I have succeeded in writing about it–the awful terror and despair of the days and weeks that surrounded the event, and my subsequent PTSD and years of broken sleep and terrible anger–but I’ve failed to write about it in a way that is useful. It’s simply too raw and ugly still, and there is no happy ending, only pain and permanent disability and broken hearts. The long-term effects led to my worst low ever, eventually, and to an appointment with a psychiatrist where I wept uncontrollably and confessed that I was afraid to leave my house and afraid to stay home alone and at the bitter end of my ability to conceal how bad things were. I was scared that I would die, that I was broken in a way that could never be put right.

Medicine was a revelation, a silver bullet that lifted me up and out in weeks. I’d gone so far as to get a prescription for anti-depressants before, but never taken them. Once I started, within six months I’d launched a new business, gotten a promotion, found a new place to live, and started dating again.

And then in January I quit. I felt good, I was falling in love, I was emphatically not a person who would be on meds for the rest of her life. I wanted to be the plucky heroine of my own story who’d had some lows and left them behind. I didn’t want my dates to see the pill bottles. I didn’t want to be damaged goods.

But I don’t want to be mired in black sadness and self-doubt any more either. I’ve met so many people lately who are doing amazing things with their lives, and I’ve lost so much time already. I write this to remind myself that I have more to offer the world than I’ve been able to give, that the drum of failure and hopelessness inside my head can change its beat. I get a flash every once in a while of what my life could mean, of what I could accomplish with the talents and abilities I have, and I need to hold on to those images and walk toward them. If I have to pause in my march each day to wash down some false pharmaceutical courage, it’s a small price to pay.