I’m still here. Honestly, that’s about all I’ve got for this post. At least, that’s why I’m writing. Well, to tell the truth, the SPAM needed to be jettisoned. Which meant I needed to log in. Which resulted in having to look up the password. Which resulted in a whole heap of sadness. Which resulted in me really wanted to plant a sad little flag back in the ground over here.
But, the flag really doesn’t need to be sad. In fact, it’s a pretty awesome flag. Let’s review a quick list of changes since last I wrote:
- I’ve moved. New state, new house, new community, new life. On the whole, this has been very, very much needed. Were it not for some now-faraway and sorely missed friends, and a little niggling bit of sadness over our leaving behind and loved and cared for house, there would be nothing I’d really miss about our life of 2 months ago.
- I’ve got a new job. And I’m remembering how awesome life can be when you love and are totally inspired by your job and the people you work with.
- I’ve got a stay-at-home husband. Not gonna lie, that’s been bumpy, but we’re managing. I’m gaining weight at a rapid clip thanks to his incredible cooking (both a pro and a con there, no?), and N’s been healthy(ish) for a good while thanks to the absence of daycare yuck. Though, I also think he’s getting a little stir crazy… judging by the fact that he runs to me when I walk in the front door holding his shoes and shouting “owside! owside! owside!”
- I’ve got a toddler. N’s running, and talking, and tantruming, and overall being a fully formed (if somewhat psychotic) little human. 20 months is equal parts captivating and horrifying.
- I’ve still got a marriage. And, oh Lord, the work that that has taken. Let’s just leave that at that for now, shall we?
So, I’m here. Are you?
So, here’s the thing. I’ve got a lot of crazy swirling around in my brain right now. And, what makes it an even crazier brand of crazy that just your normal, run-of-the-mill crazy is that I don’t even know if this crazy is justified. I vacillate between thinking I’m one small step away from totally losing it, and getting terribly, horribly angry that my totally justified fears and concerns aren’t being heard.
Ok, to back up. Yesterday was my regular 6-month follow-up with my thyroid doc. Let’s call him Dr. Useless. (I much prefer his PA, Mr. Has-a-Heart, but neither one holds a candle to my old practice back in the days I lived in civilization.)
Though I was discouraged to be seeing Dr. Useless, I was anxiously awaiting the appointment. See, things have been weird with me lately. Where to begin?
- I lightly bumped my knee on a chair during the last week of July. The next morning I had a bruise the size of a refrigerator. The bruise got bigger and badder and more painful for weeks. It was throbby and purple well into August and now, the last few days of September, it’s shadowy remains are still visible. This caused me to notice that I was bruising A LOT and healing at a glacial pace. That time N clung to my arm at daycare dropoff? Yea, did more than hurt my soul – I’m still carrying around a baby thumbprint bruise on my upper arm 3 weeks later.
- Now, my office at the job-from-hell is inhumanely cold. (Like averages 60 on a good day cold.) But, even still, fingers shouldn’t go blue this easily. Especially not when accompanied with pins and needles and numbness. And not when it happens in a comfortable living room nearly as often.
- My head pounds. A lot. Have I got stress? You betcha. But enough to make my ears ring and vision go wonky? I don’t think so. At least, I don’t get why it’d be that bad now. I mean, dad’s dead, estate taxes filed, things are actually, gulp, calming? Har har.
- Oh, and my weight. I’m 40lbs heavier than when I started my successful IVF cycle and a good 10lbs heavier than the day my water broke. Yes, that’s super duper discouraging. But, then again, I’m still not at my all-time heaviest pre-thyroid diagnosis. These things come and go, no?
I enter the appointment armed with my list, in exactly the above order. Well, if you were on Twitter yesterday you probably saw the fallout. I’ll provide the Cliff’s notes version:
Yes, I’m bruising, I’m turning blue and tingly, and have regular severe headaches. Add this to already diagnosed Hashimoto’s, PCOS, antiphospholipid antibodies, and endometriosis. And a diagnosis history that saw my Hashi’s get off the charts severe before it ever was detected. My instinct was that yes, of course, we’d discuss my weight. I mean, I have a mirror and an awareness that I’ve gone back to the potato sack section of my closet. But, call me silly for thinking that we’d discuss weight in the larger context of a whole host of other unresolved questions.
Nope. Do you want to see what my visit summary says. (Reminder: This was a prescheduled, regular 6-month followup for a diagnosed and historically difficult to control case of Hashi’s.):
Uhhh, alright then.
So, as I sat listening to the “small risk” of suicidal ideation or severe depression or risk of seizures (“Oh, you don’t have a history of seizures, do you? No? Great!”) that accompanied the weight loss pills Dr. Useless wanted to prescribe me, I got angry.
On the drive home, that anger turned into deep, deep sadness. Today, I’m verging on profound hysteria? Paranoia? Reasonable dismay?
My mom died of gall bladder cancer at 48. She lived for years with pain and was told to lose weight, find a hobby, and see a counselor. She was diagnosed on my 18th birthday. She died a few months after my 19th.
My aunt was visiting her sister, my mother, in the oncology ward. A nurse noticed a nasty burn that really refused to heal. She recommended she see her PCP for some testing. A few months before she buried her only sister, my aunt was diagnosed with leukemia. She was 50. After years of experimental treatments – some of which made her so miserable she begged for death – she’s in remission. For now.
My grandfather died at 62. Heart attack. My mom found him dead in his chair. He’d been there all night with my grandmother, his wife, calling down for him from the bedroom.
My grandmother was in that bedroom after suffering a debilitating stroke at 61. She lived into her 70s, but spent my entire life in a nursing home.
My dad lived longer than I can ever hope to. He made it to 73. We blamed his confusion on his alcoholism. But still, he went from a little confused to softball sized brain tumor to dead in about 9 months.
Family medical history isn’t a promise. I know that. I truly do. But, it does matter. And, that history above was a small part of what drove me to find answers in my 20s to my own medical complaints. Overcoming infertility was priority number 1, but living a better, longer, healthier life – whether with or without children – was also always in the mix. So, I made finding answers, getting the good doctors, and securing the most effective treatments a full-time occupation. I researched, I wrote, I questioned, I pushed, I educated myself which turned into educating others, I embraced being “that patient.”
It was utterly exhausting. And, to be totally truthful, I never really achieved a feeling of true health and well-being until I was pregnant. Pregnancy was awesome. Aside from my body doing that totally average task of growing another human, it also just. plain. worked. Like, for the first time. Ever. I joked with my maternal fetal medicine doctors and nurses that I would happily go through labor every 9 months for the rest of my life if it meant I could feel like I felt then. And, now on the other side of an unmedicated, natural laboring experience, I would still say the exact same thing.
So, now I feel like I’m circling back down the drain again, but it’s even worse this time. See, now I have the the knowledge that even an immense amount of time and effort (and, let’s be honest, time and effort I don’t really have with an adorable and mischievous 15 month old in my life) still probably won’t result in me feeling as good as I’d hope to feel. It’s hard not to feel like well-being is always going to be elusive.
And, that fatalism mixes with the knowledge of my family’s mortality and leaves me fearful.
I don’t want to die.
Melodramatic much? But, yea, welcome to my current headspace.
I know what I should do. I mean, I just need to heed my own words. Find the right doctors. Do my own homework. Be relentless. But I’m just so very, very tired. And I can’t believe I’m back here. You know that feeling you get when your computer crashes and you lose all your work after pulling an all-nighter right before a deadline? Yea, that. Except I’m the computer, the operator, and the deadline all wrapped up in one.
What matters more? Loving your work or working near loved ones? I fall asleep thinking about this, I wake up thinking about this. It’s on my mind in the shower, in the car, and in endless meetings.
I hate my job. Original, right? Certain policies of my employer reek of ickiness, I have little to no respect for my immediate bosses, and, most problematically, I’m not doing the job I was promised I’d be doing. But, I get paid very well to under-deliver on my education and experience. It was a bait and switch that landed me in a pair of golden handcuffs. Amidst a group of stellar individuals who feel much the same.
I’m seeing concerning things from my profession. Yes, a growing few are touching upon the issues of privilege that pervade our paths to professional posts; a vocal cohort are calling for reenvisioned roles for ourselves and the work we do; and I’m proud of those individuals and organizations that consistently reinforce the worthiness of what I thought would be my life’s calling. Yet, I still work in academia in the time of “quit lit”. And, just because every argument, every comment, every new piece in the genre is predictable, it doesn’t mean it doesn’t ring true. I now leave professional meetings more cynical than hopeful. Perhaps, in part, because my iPad has learned to autocorrect words and phrases like “buy-in,” and “advocacy,” and “deliverables,” and “lean times,” and “do more with less.”
But, I still truly, deeply love what I do. It’s just that I don’t often get to do it. And I had to move my family to the middle of nowhere to not do what I do.
So, given the birth and death and post-death fallout of the last year I thought I’d try and see whether I could do what I love near the remaining family I’ve got left. We inherited a house, Obamacare’s got my back, the husband’s employable, the cost of living is low-ish there, no more need for over-priced, full-time daycare… it wouldn’t have to be a good job. Just a job. To reconnect me to the work I love. To reinvigorate me.
I know I shouldn’t be discouraged, and really I’m only a little bit discouraged. I’m mostly feeling confused and trapped. We’re not talking hundreds of rejections here – there’s only been six open positions in my field (or closely allied field) in that city since February. I’ve applied to all, gotten personalized rejection emails/letters from two (which was quite nice in this day and age of unanswered applications), and heard nothing from the rest (expected). Part of me feels good about the fact that I’m not getting interviews for the mostly entry-level posts that I’m clearly overqualified for, but then the other part of me feels despondent that there aren’t really any mid-level posts for me to apply to. Which then circles me back to my worries about the profession. Which then opens the flood gates of doubt and confusion.
The way I see it now, I’ve got two options. 1. Suck it up and stay here, or 2. get any job and move (or move and get any job). Option 2 sounds better, if I’m totally honest, but I don’t even know how to begin to do it. I’ve got two graduate degrees – one so academic it makes me qualified for nothing, the other so practical it makes me qualified for only one type of job, the type I can’t seem to get. Then I get a resurgence of warm and fuzzies about my work and the people I help and the skill set I’ve established and the professional contacts I’ve made and the pride I have for my professional life. And I don’t pull the trigger. I make more excuses.
This post has no ending. It has no real purpose. I can’t undo what has been done, I can’t make happen those things out of my control. So, I wait. And get angry that my life is spent waiting. That my marriage is weighed down by the waiting. That my every day is consumed by waiting. That this waiting is so eerily familiar to an IF survivor.
Should I admit how long it took me to remember how to even log in here? Well, a while. But,
1. I’m still here
Still chugging along. Baby ButIF is now Waddler ButIF (daycare’s terminology, not mine). He’s, just, so absolutely everything. And into everything. And falling on everything. And eating everything. Which means that…
2. I’m struggling with the rest
The blog, obviously, but also all other aspects of life. I know saying it again and again doesn’t resolve it, but birth and death converging in the same 8 month time creates a wake so large I’m not sure when the ripples will cease. Sometimes it feels like they never will. And, of course, what gives first is caring for myself. Not only mentally and spiritually, but also physically. So now…
3. I’m hurting often
I’ve only recently realized that one thing that infertility gave me was carte-blanche to focus on my health. It was 5 years of the best sort of self-obsessive, no excuses, endless war to health. Or at least some sort of odd version of “health” that included drugs, and needles, and miscarriages, and scarred veins. But, health it was. When I ached, I went to the doctor. When I bled, it was meticulously recorded on the calendar. When I ate, I religiously popped pills with exactly the right dose of water. When asked of symptoms, I had a list. When telling my medical history, I brought out my own collated file. Two years ago this week, we were starting our IVF cycle and I was logging long hours in the car back and forth to the RE. Now I don’t have a PCP, my glasses are broken, I weigh more than the day I went into labor, I’ve had a suspicious bruise that’s ached for over a month, and I’m too tired to care. When did it become so easy to stop caring about myself? Probably about the same time that I realized that…
4. I’m lost and can’t find directions
I hate my job. I own homes in two states, and am trying my damnedest to pick up everything we’ve made here and move to my childhood home. My run-down, falling apart childhood home that we can’t even insure until we get a new roof, rip down the swimming pool, spend lots of money. Money we don’t have thanks to the stock market’s timing, my husband going part-time to return to school, the cost of the tuition for that school, the cost of sending the littlest ButIF to daycare full-time due to inflexible child-care policies at the only daycare in town. The town we’re trying so hard to leave, the town my husband isn’t in because he’s regularly fleeing to our other uninsured home to meet with contractors to spend money we don’t have. Is it a home when there’s no family in it? My marriage is, well, complicated. But, as with our marriage, more broadly…
5. I’m not giving up
This isn’t a happy post. An exuberant return. It’s honest. And, that makes me feel like I’m letting you down. Just like I’ve felt like I’m letting so many people in my life down these days, not the least of which the littlest ButIF. It’ll get better. I’ll get better. I feel better now than I did when I set fingers to keys, and I’ll feel better yet when I click “Publish.” This blog is part of me, and part of me I’m claiming back. I’m struggling and hurting and lost, but I’m here.
I’ve kinda been all over the place lately. I spent my first 3 nights away from N this past weekend. I had to go out and start attending to my dad’s house. (The sheer volume of mouse droppings on his countertops when I dragged myself in the door after an epically bad 8.5 hour drive assured me that the trip was necessary.) All three of the ButIf’s, not the least of which the littlest ButIf, have been sick off and on since at least November. The hubs and I, both still recovering from last month’s pneumonia diagnoses times 2, are struggling to identify our roles as parents, to find a schedule somewhere in this life that has absolutely refused to be scheduled. Dealing with orphanhood has also been weighing me down. Not just the obvious emotional toll, but also the medical bills, the calls to the estate lawyer, the drive to pick up the cremains, the arguments with water companies that expected his bill to be paid on time despite the fact that their customer died the day before his bill was due… I digress. But, finally, my health has also been a constant elephant in the room. I’m in pain a lot these days. Surely all the driving and the physical exertion at my dad’s house isn’t helping, but no 31 year old should hurt this much. Tingling hands, aching legs, the reemergence of the hip rash, weighing 10 pounds heavier at 9 months postpartum what I did the day I delivered, a back that causes constant, sleepless pain. Next week’s rheumatologist appointment can’t come soon enough.
But, as I circle the wagons in preparation for another battle with medical professionals (albeit one that I still have some respect for), it’s causing me to reflect on my experiences with the medical field. To put it simply, I’ve been failed just so many times. And the cause hasn’t really mattered. What unites my experiences navigating the medical diagnoses of infertility, repeat miscarriage, endometriosis, Hashimoto’s, PCOS, and my as of yet undiagnosed spondyloarthropathy is one thing – I’ve had some truly baffling responses lobbed at me. The college health center MD who, upon first suggesting PCOS as the reason for my missing menses, casually stated to 20-year-old me, “You’ll be infertile, but otherwise you’ll be fine.” The PCP who recommended a hobby and counseling would cure my uncontrollable and unexplainable weight gain. The OB/GYN nurse who spent 10 minutes badgering me to tell her exactly which prenatal vitamin I’d been taking, even though she knew that day’s appointment was the one at which I’d be told that I needed to terminate the suspected ectopic pregnancy I’d been carrying after 18 months of trying. The phlebotomist who offered to be my surrogate because, “I get knocked up whenever my husband looks at me!” The other OB/GYN who, upon learning I’d relocated to the area, was infertile, and was going to be pursuing more infertility treatments, kept talking to me about the REI in the big town up the road (apparently years of medical school and residency in the field of obstetrics didn’t dissuade her of the notion that one goes to a sporting goods store to treat infertility). The rheumatologist who told me she couldn’t help me until my disease had progressed to the point that I could no longer function. The common thread is the sheer WTF-ness of it all.
And, I’m not alone. That’s why I was happy to stumble upon the new blog You Need a New Doctor. There’s a few things that sharing these truly horrifying stories can do. They instill solidarity in those of us who have endured them, they let us know that (sadly) we are far from alone. They give us a chance to laugh (or cry) along with a community of fellow-travelers. They shame a system that has repeatedly failed us. They inspire us to help make the system change. They let external observers in on the dirty little secret that one person’s “unfortunate bad experience” is, in fact, an entire community’s burden. We can do better.
So, please check it out. And, while you’re there, check out my own submission about my third miscarriage – Thanks for the Jar?
And I’m back to work as if nothing happened. Pushing paper from one side of my desk to the other. Smiling at students. Helping to contribute to an idyllic education in a bitterly cold, if brilliantly beautiful, academic wonderland.
My last parent died on February 7, 2015. I’m so startlingly aware of what I no longer have with each breath I take. I’m feel like an orphan at 31. Why isn’t there a word for orphaned adults? Well, one that doesn’t make me feel like I’m trivializing the experiences of “true” orphans. The little orphan Annies and kids on the Unicef commercials. Surely I should feel grateful for the time I got. I should stop whining. There’s no word because it’s not that bad, right?
There is a word, I guess. Parentless. But this definition annoys me as much as its infertility counterpart – childless. I don’t want to define myself by what I don’t have now, just as much as I didn’t want to define myself by what I didn’t have then. It leaves out so much. What I did have, what I had to endure, what I’ll never know again. Childlessness undervalued my other half, the man who made two a family. It didn’t let the world in to the daily battle we were fighting. It didn’t acknowledge the loss of naiveté we’d suffered along the way. It made cut and dry something that was far from that in our situation.
Parentlessness feels much the same. Though it does imply I once was with parents, and now I am not, it glosses over the agony by which that happened. The midnight call asking permission to transfer my dad to the hospital, the 1am call saying, “It’s not good,” the 2am call to say he was nearly gone. I listened to the hospital machinery chirp and chime as my father took his last breaths 400 miles away. I held my son, I packed the car, we drove. The last of the 3am unplanned drives home. My home. Our home. Our house now.
But, now I’m back at work. Living this other life. Wake up, daycare, work, dinner, sleep, repeat. Another house stands empty 400 miles away in a city that has my heart. With both my parents gone, I feel like that city is the last parent I have left, and I ache to be there with all my heart. To leave this job, this adopted home, this life I spent the last 15 years building for myself behind. Now is not the time to make major life decisions, yet I don’t know how to live in both worlds at once. So, I spent the evening of my dad’s funeral applying for a job 400 miles away. And I spend tonight restless.
The people that gave me life are gone. If that doesn’t make me want to start living, I don’t know what will…
My head’s reeling. I’ll keep it short. My dad’s brain cancer isn’t just brain cancer. Or, rather, my dad has an entirely separate additional cancer. How does that happen?
Glioblastoma multiforme diagnosed in September; adenocarcinoma of the intestines diagnosed today.
Not sure where I’m going with this, other than marking it. Waving the white flag. Settling onto those words “palliative” and “hospice.” Waiting for the end.
How many times have I made promises to write more? To return to the blogosphere? To reinvigorate my Twitter presence? Too many. Far too many if you count the silent thoughts that went unrecorded. So, this is definitely not me making more promises I won’t keep…
But, I had a realization yesterday. As I sat with my therapist and reviewed dad’s health (re-hospitalized, poor, and fading), N’s sleeping (non-existent), my marriage (strained), my career (overwhelming), and my health (rocky and ignored), she said something that surprised me. As much as I’ve come to respect and embrace my need for our sessions, I’ve still always subconsciously conceptualized therapy as a highly narcissistic thing. What could be more self-centered than an hour exploring the self? So it felt out of left field when she observed that I seem the happiest when I’m helping others. Was this just a compliment to help walk me back from the edge that’s become my life? Had I really fooled her into thinking of me as this give give giver?
But, then, I really mulled it over. Who am I now? Who am I beyond a grieving daughter and proud mother? What makes me me? What makes me happy?
It’s then that I realized that, where others have hobbies, I have the cause of infertility. The drive to help the young and chronically ill. To walk others through the minefield that is an undifferentiated autoimmune diagnosis. And, I miss that part of me.
Infertility can never be “cured,” but it can recede into the shadows. It absolutely has for me, especially since the tumult of September. And, a large part of what makes me me went with it.
I miss my RESOLVE support group. I miss who I was when I was sitting in the front of that often very crowded hospital conference room. I miss discussion forums and surprise questions from Facebook acquaintances and teary phone calls from women’s whose menstrual cycles I knew as well as my own. Being an infertility advocate was my club sport, my crafting, my recreational time. It’s left an odd void.
Yet, my relationship with infertility is still forever changed thanks to my son. I can’t go back and feel those feelings as deeply, as wholly, and as painfully as I once did. They, too, are shadows of what they once were. And that makes me feel like an intruder in my own identity. A fraud.
I need to rediscover my role in this community. Because, yes, my therapist is right. No past time makes me smile brighter or cry harder than advocating for the rights and opportunities of young women facing infertility and autoimmune disease.
In a wonderful stroke of coincidence, this realization has dawned just as announcements of RESOLVE’s Advocacy Day 2015 hit the airwaves. I can’t fully commit to attending just yet – my life is a whirl of unanswered questions thanks to cancer – but I pledge now to try and make it this year. Won’t some of you join me?
I’ve thought often about what memories of my mother I’ll share with N. It seems such a daunting task. How can you ever convey the entirety of an entire beautiful (if brief) life in a few words? Express all that energetic love in a single story?
So today, on the 12th anniversary of her death, I want to jot a few down for posterity:
- She woke me up at 4:35am every single birthday. She’d say, “Welcome to the world my darling daughter!” and I’d glare sleepily at her with as much scorn as a 7-year old could muster. We’d almost always grab a birthday breakfast at a diner chain soon after.
- She loved Christmas. And decorations. And tradition. It was sacrosanct. The Thanksgiving feast would start with a Christmas-themed present on my dining room chair, after we’d spent the afternoon as the turkey cooked wrapping the Christmas presents she’d always have fully purchased before Thanksgiving. The decorating, tree cutting, house trimming, cookie baking, and light-hanging would continue on for the rest of the weekend.
- She woke up early. 4:30am was late. She’d get more done before dawn than most did in entire days. She didn’t pass that vim and vigor on to me.
- She always fell asleep with her TV on. I’d sneak into her room and be the “TV fairy” and turn it off for the night, before I – night owl already at age 10 – would settle in for the night.
- She loved me “’round the world and back again.” Just as I love N.
- She had a truly inspired way of making games out of tasks most could wouldn’t want to do.
- She was fiercely protective of her only child, and defended my perfection to any who’d doubt it. Sometimes her loyalty was well-earned, other times, she gave it to me in error. Knowing she always stood behind me, though, made me strive to always prove her right. I never wanted her to be wrong.
- She was the embodiment of her red convertible. Loud, but not offensive. Proud, but not boastful. Conspicuous, yes, but never flagrant. How many nights we spent staring at the stars, reclined in those seats, listening to “our song.”
Ultimately, though, I know none of the items above will even come close to cutting it. But, in the process of jotting them all down and tweeting with another IFer I had one final memory. My mom would always get a little strange each February. I don’t know how early on in our young lives we can tell when another human seems in distress, but I felt it annually from that point forward. I’d never find her weeping in a corner, or losing her temper, or anything nearly that obvious. I’d just silently sense her pain. Her eyes would be duller, her ready laugh a little less genuine, her pep a little less present. In retrospect, she’d act like a muted down version of how she’d act in the pain-med-addled final days of her battle with cancer. She’d just cease to be my mom.
Somewhere in my mid teen years I got interested in genealogy. Something about having so many dead immediate relatives, I think. Anyway, I started asking about family statistics – birth and death dates, ages, places of birth, yadda, yadda. That’s when I realized it. My mom’s dad – my grandfather I could barely remember – died in February. It clicked in an instant. In that moment I knew the love she’d felt for that man more than I’d ever garnered from countless stories and anecdotes. Her grief changed her mentally and physically. A change so major even an self-centered 8 year old noted it. This man must have been special. This man really mattered.
I’m not thrilled at repeating this process, of having N intuit my pain so young, but I can only hope his conclusions are ultimately the same as mine. That he one day knows both the anecdotes and visceral reactions her loss has had on me. And that mom’s pain underscores the power of the grandma he’ll never know.