My mother is a hypochondriac, and so my sister and I have grown to question, by default, everything she ever says about her health.
Six years ago, I got sick with an incurable condition. My sister has always questioned the validity of my condition, even though half a dozen doctors have confirmed it. While the condition is in remission, there are side effects that linger.
I can’t talk about my health struggles around my sister. I feel as though she dismisses them or invalidates them.
I can’t discuss my anxiety or panic attacks, even as they are happening. I can’t say no to going places because of my agoraphobia because I fear her reaction. I can’t mention the pain of my chronic hives because she’ll flippantly say “just put some lotion on it,” as if that will cure it.
I love my sister, but I wish I could be open and honest with her about what is going on in my life. But our mother has poisoned that potential. Every attempt at conversation about health ends in her shutting down. I understand why she does this, but I just wish that someday it could be different. We are not our mother, and we are allowed to get sick.
My story all begins in August of 1976. My birth mother was 17 years old and pregnant with me. My mom already had one child, my sister who was four years older than me, so my mother was 13 when she gave birth to my sister. My sister was taken by the state and was considered unadoptable because she sat in the corner and rocked back and forth.
Fast forward to 1976. I have been told that my birth mother’s parents informed her that she had already made one mistake (my sister) and if she had me they would disown her, so she threw herself down two flights of stairs. She went into labor from the fall and, because she was only seven or so months along in her pregnancy, I only weighed 4 lbs. 5 oz. at birth, but I survived.
My birth mother took me home and life began. It was said she was a drug user and abuser, and while she was under the influence, she would hold me underwater to watch the bubbles come up. I was told she used my bottom as her personal ashtray, and that she used her food stamps to buy drugs (at that time food stamps were like paper money, and were traded for real money or drugs).
Elsewhere, my adoptive mother was telling her best friend that all she wanted for Christmas was a baby. The best friend had a sister and that sister knew my birth mother. One day, when my future adoptive mother’s husband was at work, he came out to his car and there I was. I was dressed in a dirty T-shirt that had been used as a makeshift diaper. He zipped me up in his coat–it was winter in Charlotte, NC–and took me home. He walked into the house and unzipped his coat to show me my future adoptive mom.
Adoption proceedings began, but I was returned to my birth mother. She burned all the dresses my adoptive mother bought and didn’t use the burn cream for my bottom. My birth mother tried to stop the adoption because she would lose her welfare benefits. The judge approved the adoption and at 14 months old and 11 pounds, I was finally adopted.
When I was about two, my mother’s marriage ended; her husband threatened to kill me because I wouldn’t stop crying. We moved back home with her parents and we lived with them until my mom remarried. Her husband adopted me to give me his last name.
Every time I was adopted, my birth certificate was legally changed to represent my current parents and their respective ages at the time I was born. However, many years later I told my mother than I had been abused by a family member and she confided in me that her father, my granddaddy, whom I called daddy for years, had molested her. Only after she returned home with me after the end of her marriage, did she confront him and say it was over. I think she got pregnant by him, moved away, remarried and had me.
Every time I tried to talk about my adoption and wanted to search, she would tell me to talk to my granddaddy; he was supposed to have all the paperwork. When I asked him, he would tell me to go see my mom, that she had the papers. This man never threw anything away, so it’s odd to me that the papers were never found, which also makes me think something shady happened. But no one in the family who is left will talk about it.
My granddaddy was a raging alcoholic for years and only stopped drinking when the doctor told him if he didn’t he would die. He abused my uncles and my mom.
My records are sealed, as it was all considered a private adoption, and unless I have a terminal illness or need an organ that my children can’t provide, I’d have to petition the courts to unseal my records, and they can still deny the request.
I don’t know the truth for sure and it doesn’t really matter, I guess, other than to finally have answers. I hold no ill will toward anyone involved, no matter which story is true. I feel bad that my mom suffered that abuse. I’ve been abused sexually and I know how that feels. I just wish I could know the truth just so I’d know where I belong. I have an awesome husband and three great kids, so I have a family. I’d just like to have medical information. So there it is my story I hope it helps.
So, I got my medicine adjusted like I said I was going to in my last post.
After a hilarious rigmarole of being referred to a doctor who only saw seniors, then one who only saw children, then one who didn’t take my insurance, I finally ended up with a really sweet doctor (who is the tiniest woman I’ve ever met).
She added another antidepressant to the one I was already taking, and it seems to have helped the symptoms in question – I’m still sleeping odd hours, but it’s only for 8-9 hours at a stretch, not 12-14, and my default state is “bored” instead of “bored and sad and mopey and lonely.”
And yet…
(There’s always an “and yet” with mental illness, isn’t there?)
(ed note: Yes. – AB)
And yet I’ve not managed to quite nail things down. I’ll stay up late without realizing how late it is, then sleep until 4 or 5 the next afternoon. The new medicine causes insomnia, so I was warned to only take it in the morning. But if I don’t take it when I wake up at 4 PM, then I’ll just sleep even more. If I do take it, I’ll be up all night and sleep late the next day. If I do manage to wake up early and take my medicine, I’m so tired that even the medicine can’t keep me up and I pass out around noon and wake up at 7 PM (which is what happened today).
I just want to wake up in the morning feeling at least somewhat rested and get tired at night being able to fall asleep. Since when is that such a massive thing to ask? If I could just do that AND have my medicine killing off the sadness and apathy, then all I’d have to do is muster up the motivation to do laundry and clean my room and make it look like a human being lives here!
To top it all off, I’m moving to North Carolina within the month. My best friend is moving back into her childhood home, which she inherited when her dad died, and she’s offered to let me live there rent-free if I cover half of the bills. Her area has a much better economy than mine, so I could find a job more easily. And there are nearby schools where I could get either an associate’s or a second bachelor’s degree in the field I want to move into. It’s too good an offer to refuse, so I’m cashing out my savings and heading up there as soon as she gets moved in and ready.
And yet…
What if it all falls apart? What if I can’t find a good psychiatrist nearby? I don’t even know what my insurance situation would be before I got a job. What if I get on this same fucked up sleep schedule again and my room stays this messy and I’m awful to live with and she hates me? What if I still don’t find a job and I burn through all my savings? What if I get the degree, and take out a bunch of loans to do it, and still can’t find a job even then?
I don’t know. I was so sure for awhile this medicine had made things a lot better, but I sure don’t feel any less afraid.
Most of us, well, we don’t think much about their hearts.
From A&P, I saw precisely what one looks like and was a little disappointed. It also looks like a fatty Nerf football, which doesn’t do it and it’s job any justice.
I know I’ve waxed poetic about the brain, but honestly, without the heart? There would be no brain function.
For years, I simply ignored my heart because, well, it worked. It’s a luxury most of us don’t have to think about until we’re old and wrinkly. Yeah, yeah, yeah, I mean, I KNEW about a heart healthy diet, I knew things could happen to your heart, or you could be born with a congenital heart defect(s).
The first time I became aware of my heart, I was leaving Las Vegas (no, not that depressing movie).
I’d had a migraine, because, obviously, VEGAS, so I popped a few triptans into my mouth and let them melt in my mouth. I’d not had luck with them so far, but my ancient, forgetful neurologist insisted I try them. He even gave me a garbage bag full of samples, (which is neither here nor there, excepting that if I’d tried to travel with them, I’d have been accused of drug trafficking), and urged me to try these breakthrough migraine meds.
Which leads me to the plane going home from Vegas.
I’m not a nervous flyer, I wasn’t stressed, I wasn’t upset in any way. In fact, I felt great.
Until my heart started a rockin’ beat in my chest. Started, I looked down at my chest to note that while it felt like my heart was going to burst through my chest wall and flop down onto the tray table like a fish out of water.
It took a second because it made things a bit blurry, but I realized that I was experiencing palpitations. So much for my garbage bag of triptan samples. When I returned to the neurologist, I mentioned my rockin’ heart beat and he asked, “are you sure?” (which he may have been directing at old skull on his desk) and I assured him that yes, I was entirely sure. He explained that it was a rare side effect of the triptans, but did look a little oddly at me – I think he’d finally realized who I was.
BAM!
No more triptans. It wasn’t a huge deal – they’d not really helped and shit, heart palpitations aren’t a joking matter.
At this point, I should have seen a cardiologist.
Clearly, I did not.
Years later (late 2016), I was admitted to the cardiac ICU after going to the ER to figure out why I’d been falling so often – now sober, it made no sense. They ran my labs and my calcium was super high and admitted me. They twerked around my medications a bit, and kept me hooked up to that medusa-like EKG for what seemed like days because it probably was days. Outcome? Prolonged QT-syndrome – chemically (medication) induced.
I should have seen a cardiologist, but I was homeless and broke and let myself forget about it. I mean, it stayed there in my mind, gnawing in the back of my brain stem, but still, did nothing.
I’m a terrible patient.
Last year, I’d found out that my mother had hypertrophic cardiomyopathy – which has a genetic basis, and ignored it again.
Finally, after that stupid little voice in my head reminding me in increasingly annoying levels that hey, this heart-thing is important, Dumbo, I made my appointment at a random cardiac clinic near my house. I went in, Nathan in tow, expecting nothing whatsoever to be wrong. I mean, really – I had enough issues already – and my heart, with those few minor exceptions, was fine.
I got to wear a cardiac event monitor for 30 days (somehow it ended up at 35 days) and every single day/night I wore it, I was in hell. The electrodes itched, they popped off randomly, and they’d choke me now and again. Which is why I took it off around day 20, waiting for the call from the company that monitors for abnormal rhythms, and since I never got the call, I never put it back on.
Bad, BAD patient.
During my scheduled ECG, I laid on the table, knowing they wouldn’t find anything. I mean, I didn’t even think I HAD a heart, much less problems with one.
A couple days later, I was told to get a cardiac MRI. At this point, I kinda rolled my eyes because CLEARLY THERE WAS NOTHING WRONG.
Several days after THAT was complete, I was called back into the cardiologists office, again, Nathan in tow.
“It’s fine,” I told Nathan on the 3 minute drive to the cardio practice. “It’s not a big deal.” Nathan didn’t look like it was so fine, but for all I knew, he could just have been constipated.
My cardiologist steps into the room and starts with, “we’re going to send you downtown to Northwestern,” and that I needed “a genetic screening” because I “had hypertrophic cardiomyopathy.”
“Okay,” I replied, thinking I was making a major gift for geneticists everywhere. I mean, certainly my genes were awesomely superior.
In the meantime, Dave and I worked out a plan to take the kids to a pediatric cardiologist.
The genetic test took approximately 100 years to complete (I never said that I was good at math) and had a failure rate of 60%. Thankfully, my body, like me is highly competitive, and it did work because I was soon to learn that I’d had had five genetic markers for the test (four of which the meaning was indeterminate). The one that I DID have showed that my HCM was genetic, and I had a 50% chance of passing it on to any of my babies.
My heart sank at that – you hate to leave a genetic legacy like THAT to anyone. I’d prepared myself for it, however, because what else beyond teeth-gnashing and pearl-clutching can you do?
At their appointment with the pediatric cardiologist, their hearts were examined and they showed no signs or any development of hypertrophic cardiomyopathy. They’re young, of course, and the yearly monitoring will help the doctor to catch any new developments in their hearts. Plus, I mean, it’s a combination of gene mutations that cause HCM, and with all genes considered, there may be protective genes that reduce the chance of the development of HCM, even if they are carriers.
At least, that’s what I tell myself.
My geneticist was kind enough to send out kits for the kids, and in approximately 150 years, they will find out if they’re carriers.
Until then, we’ll wait and see.
Great.
If life has taught me nothing over the last five years, it’s this: life is precious, precious gold, and if you squander it away, whelp, you’re probably not going to get a second chance. If you want to make your mark in this world, get the fuck out there and do it. Don’t be scared, fear can be a good thing – it means you still have something to live for.
“We’re all going to die. We don’t get much say over how or when, but we do get to decide how we’re gonna live. So, do it. Decide. Is this the life you want to live? Is this the person you want to love? Is this the best you can be? Can you be stronger? Kinder? More compassionate?
Decide. Breathe in.
Breathe out and decide.
Nothing is permanent you’ll never know when your time is up.
I trust that you all have had a wonderful winter break with the kidlets, a Happy Hanukkah, Merry Christmas, Happy Kwanzaa, Awesome Festivus and Amazing New Year!
Mine has been great and today is being spent getting the decorations down, my calendar organized and my plan for implementing the few resolutions I’ve made for myself written down.
Here’s to a full year of happiness to you and your loved ones!
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My mother is a hypochondriac, and so my sister and I have grown to question, by default, everything she ever says about her health.