I was bitten by a tick when I was ten. It’s the only tick bite I remember, though a large number of those with Lyme don’t remember a tick bite. There’s no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it’s been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you’ve been given a taste of that forbidden formula).
And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.
I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot.
Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn’t move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment.
It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn’t want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.
The good news is that it wasn’t a stroke or brain cancer, though the way the doctor told me it was *just* Bell’s Palsy made it seem so benign as though I hadn’t just lost full functionality of one side of my face and now looked like this:
“Are you sure nothing else is wrong?” I asked the ER doc. I just couldn’t fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell’s Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell’s Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)
Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, “I can’t.” We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn’t sit down at all because I felt so antsy and uncomfortable. It was one of the only times I’ve ever had the urge to scrub a floor. It’s unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It’s been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).
That was also the day that the dizziness set in, and it’s kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn’t, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn’t want them to think I was crazy. I wish I had gone while in California.
I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.
At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn’t work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn’t have MS and if I did that the test showed it. I didn’t want to be sick, but I also wanted an answer to why I felt so badly.
I’m still seeing the therapist for Post Traumatic Stress Disorder, but I am also seeing a Crystal therapist as well, every other week. (I can’t even begin to explain this – but if you’re curious – Google Crystal Sessions, Alexander Method, Natural Shock Healing or dark magic…er, scratch that…that won’t help.)
Unfortunately, there are still days when I can tell it isn’t gone. I’m not sure what I thought, but I think it was something like ”This Shit Will Be Over By Summer, RIGHT?”
Sometimes something as simple as a favorite TV show – (Brothers & Sisters to be exact) can send me into a full-blown anxiety attack – and push the reality of a tragedy back into my life as fast as I had swept it under the rug. And don’t underestimate me, I am pretty damn good as pushing dirt under rugs. Just ask my husband…
::Can I just take a slick city minute to say to the writers of Brothers & Sisters…whoa. I think you got your point across. As I stood on my back patio gasping for air and bawling my eyes out, I realized you people need to find hobbies. Something other than thinking of ways to make innocent, crazy, stressed-out TV addicts freak the hell out. ::steps off my soapbox::
Back to my point.
I am happy to report that there are days that go by where I feel like life is back to normal. There are moments in time where I feel myself forgetting about the fear.
Here recently, I’ve had several people ask what exactly my “bad days” look like? So, I thought I’d take a moment and explain what it feels like to always think the bottom is about to fall out.
Because really, that’s what it boils down to for me. I have days where I can pretend like bad things happen to other people. But, those days creep in, where I can’t help but think that too much time has passed between “bad things happening to me” and I am due.
There really is only one moment of every.single.day (approximatey 7:50 a.m. Nice way to start the day, eh?) that really has be stumped.
I pull into the school parking lot and I feel my heart begin to beat just a tad bit faster…and then my mind starts to race…and then my breaths become faster…and I pretend to be cool as a cucumber (whatever that means) and say goodbye to my son, I kiss him, I hug him and I watch him as he walks through the front doors. Slowly, I pull out of the drop off lane and I pull into a parking spot.
There – every single day, I have a brief panic attack. Without fail.
I am used to it now. Really, I am.
The tears only last about a minute or two. I regroup, adjust my eyeliner and go about my business. Ready to take on the world. It’s not as bad as it used to be. But, the thoughts are still there. I still think,
”Was that the last time I will ever kiss his warm cheek? “
“Was that the last time I ever see him alive?”
“Will someone come into the school today with a gun? Is this the day?”
And then I tell myself that I can’t let this fear control me. I can’t let Satan in my life, in my thoughts & in my heart. I push my fears aside every morning and I stop and thank God that I just watched my happy, healthy son, walk into school on two legs, with some pep in his step. I thank my lucky stars. And I continue my commute.
And even though this still happens every morning, the effect it has on me is shortening. And I know that this isn’t going to define me, control me or even cross my mind in the future. I may never be the same as I was prior to July 19, 2009, and that’s okay. I would dare to say that I am not supposed to be.
But, I can tell you that PTSD may linger with me the rest of my life, but it will not present itself every day. I know that. And that gives me hope.
I don’t think anyone knows the isolation that infertility brings with it unless they’ve lived it. Sure, we have several friends that we share all this with. Or rather, I do. I don’t know that my husband, Brian, has really told anyone what we’re going through. If you know him in real life, you know that he is silent about things that bother him. If you don’t know him, I cannot stress how quiet and private he is. But most of my friends know what we’re going through, and a few of our family members. Most people are unfailingly supportive, even if they don’t understand a bit of what’s going on.
Unfortunately, that doesn’t make it any less lonely, and doesn’t make me feel like less of a freak. Save your breath — rationally I know I’m not a freak. But that doesn’t keep me from feeling that way. And no amount of support from my very fertile friends makes it less lonely. Infertile friends — we are blessed with a few of those, too, though I wish they didn’t have to go through it either — make it even easier.
But when I’m in that exam room, having my lady bits poked and mishandled by the doctor and his ultrasound wand of pain, I am alone. When the Clomid headache sets in and I can’t even think straight, no one else is going to deal with that pain for me. When we schedule our love life, it’s just the two of us. When my cycle abruptly ends with the inevitable period, it’s just me.
That’s isolation.
That’s infertility.
But what really shocks me is the unexpected ways that infertility continually separates us from our family and friends. While it colors how I look at the world, it also colors how people look at me.
Between daycare and lessons, I come into contact with about 11 or 12 families each week. I have at least one doctor’s appointment each month and sometimes more, since I’m always having blood work and such, I need to let the affected parties know that either Brian will be here with the Munchkin Coalition, or that I’ll be late for lessons. None of them get too nosy or pry into my personal life, and all of them offer their support quietly, discreetly, and in a very sincere manner.
Except for one person. Who feels the need to tell me (again and again and again) the three stories she knows about other people suffering through IF, and how easy it was for her to get pregnant with her multiple children, and how she just can’t imagine how horrible it must be. And then, she says it…. “I am SO glad I didn’t have to do any of that! I just got pregnant so easily!” And laughs.
I’m not kidding you. She laughs at the misery of others and her amazing good fortune. One of these days I’m either going to punch her, or tell her what I’m thinking. Which is “Me, too. I’m glad you never had to go through any of this, because you couldn’t take it.” Nothing says “You’re a Freak” like that kind of statement.
My next example is a conversation I had with a family member who has expressed absolutely zero interest in our fertility situation until a recent phone call. Which, I have to say, was lovely and all that, but also really strange after two years of completely ignoring the situation.
It’s hard to catch someone up after two years of constant flux and ordeal. She then said “I wasn’t sure if you wanted to talk about it or not.” Um…yeah. I have a blog about this, ya’ll. It’s pretty much all I do talk about, it seems. Asking how it’s going makes me feel like you care, like you’re interested, like I’m not alone. The only reason I don’t talk about it 24/7/365 is because I know how that would annoy people.
So instead I wait to be asked, and feel separated from my family.
Finally, a very sweet friend recently made a comment that showed me just how much people must view me through what I’ve come to think of as The Infertility Filter. After all, it doesn’t just color how I see the world, but also how the world sees me.
We were talking about her family, and her new niece. She related an adorable story about her nephews as well. We rarely get to see them, so it was neat to catch up and think of them as little people and not as the babies we last saw. We parted ways and about 10 minutes later my phone beeped. She texted to apologize for her story, because she thought the content might have been inconsiderate and hurtful given our infertile state.
Granted, after I spent the next ten minutes really thinking about it I was able to see how someone could have taken offense or been hurt, given the actual content of the story she shared. If they were seriously sensitive and felt the world revolved around them. I, however, love to hear stories about other people’s kids — I spend 5 days a week caring for other people’s children, right?
Even though I was completely un-offended and hadn’t spared it a second thought until she texted, I appreciated her concern.
But I also had to wonder — who else is censoring what they say because I can’t get pregnant? Are we the topic of conversation when we’re not there? Are we your dinner conversation? How often are we referred to as “Brian and Andrea. They can’t get pregnant.” Or “this couple we know who can’t have a baby”.
I hate being pigeon-holed anyway, but to be ostracized by perfectly well-meaning people is kind of a bummer in and of itself. How many stories are we not hearing because someone is worried about our reaction or our feelings? Sure, it’s thoughtful. But it’s also terribly isolating.
A lot of the time, people with infertility isolate themselves. We really don’t want to make people uncomfortable or uneasy. We don’t want to be seen as abnormal, so we keep our problems hidden away. We don’t put our needs and concerns on the prayer list at church. We don’t ask friends to accompany us to the doctor for moral support (at least not after the first time you turn us down).
We don’t offer information, and we are crushed when you don’t ask. Quietly crushed. It’s so terribly easy to believe that we are all alone in our struggles, especially for couples who don’t know any other infertile couples. The longer we’re infertile, the more it builds up, and the lonelier we become.
That’s one reason I blog. Granted, I started blogging before we were “trying”, and I’ll hopefully still be blogging long after we have children, so it’s not technically an “infertility blog”. And yet it is.
I found that when we really started having trouble getting pregnant a lot of my information, ideas, inspiration, and encouragement came from the blogging world. I learned more from other infertile people than from doctors or journal articles. I want to give back to that. I want to be a source of information and encouragement to other infertiles out there who have just received a diagnosis, or just finished their fifth failed IUI, or who have discovered that Clomid doesn’t get everybody pregnant right off the bat.
So I make it a point to live our story out loud and proud. I won’t act ashamed of my infertility, and I won’t pretend it doesn’t exist to make someone else comfortable. I won’t be silent about something that affects so many people, and I won’t make anyone else feel embarrassed either by their fertility or their ability to pop out kids like it’s easier than breathing.
If you got here through a search, you are not alone. Pull up a seat, pop open a bottle of water (no booze in the infertile zone except CD 1-4), and share your stories. Ask questions.
If I can’t answer, maybe someone else can. Let’s learn from each other, and lift each other up. Need prayer? You got it. Need to gripe about how much this sucks, how cold your doctor’s hands are, or how much you really hate scheduled nookie? Go for it — we’re listening.
You are not alone, you don’t have to be isolated, and you are okay.
If we are all determined to do this right out loud, infertility does not have to separate us from them.
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?
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.
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.
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.
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.
