Stranger Things: Into the Upside Down

Things have gotten a little strange.  Topsy turvy, upside down, through the looking glass, into the upside down—strange.

Health issues for me are relatively stable.  Another round of testing and diagnostics at the end of 2016 revealed nothing.  No changes.  No new developments.  No new insight.  Doctors conclude that means that I am stable, and that things have leveled off for me.  I tend to think this means that the doctors simply aren’t looking in the right areas.  But who am I to question the process at this point?  My pushing for new or different answers has revealed very little.  Specialists in multiple areas have all concluded that things are inconclusive.  So, here I stand, with my transverse myelitis diagnosis, my array of daily prescription pills, and very little else to talk about.

And things really are relatively stable, physically speaking.  I am back to regularly exercise and running, training up for the spring running season.  A half marathon on the horizon, and my first sub-two-hour half marathon in the books, courtesy of my running in 2016.  Symptoms are relatively the same.  Mostly annoying.  Sometimes disturbing.  Always present.  But relatively stable.

My latest EEG revealed a “soft” or “squished” reading of my brain waves.  Whatever the hell that means.  But it would suggest that my brain waves were not hitting on all cylinders that day.  Sleepy?  Drowsy?  Confused?  Worse?  Who the hell knows.  And my mental health, in general, has been good.  I mean, it doesn’t hurt that I take an antidepressant to deal with nerve pain.  Because an antidepressant surely would not exacerbate what may or may not be an undiagnosed form of clinical depression.  Might help even.  But, you know.  Things are stable.

I did add high cholesterol, high blood sugar, and an abnormal mole on my back (biopsy results—negative) to the mix.  But nothing moved the needle significantly, health-wise.  Stable is, as stable does.

Why, then, would things be strange?  Because I’m not the only person currently dealing with health issues.  My father has very recently been diagnosed with prostate cancer, the extent of which is still under investigation and diagnosis.  All signs point to the cancer being contained within the prostate, meaning that excising the offending gland may solve the issue, with little to no further treatment.  But still, the C-word.  Cancer.  It sucks.  No matter how much it appears to be self-contained.

My mother went through a round of breast cancer, beating back the demons with a mastectomy, chemotherapy, and five years of monitoring, testing, and prescription drugs to make sure it did not come back.  My step-father-in-law went through a round of sarcoma in his leg, beating back his demons with chemotherapy, removal of the sarcoma, and a round of radiation, now followed again with regular monitoring and testing to make sure it does not come back.  The C-word is not always lethal.  But sometimes, it is.

My father-in-law succumbed to cancer in multiple organs.  My uncle (ironically, at my dad’s current age) succumbed to colon cancer that spread to other organs.  Three of my grandparents succumbed to cancer in some form.  My college roommate and fraternity brother succumbed to a brain tumor.  Many other friends, family, and close community members have succumbed to various forms of cancer.  It sucks.  Quite literally.

So, as I quietly worry about annoying, disturbing, and invisible ailments that don’t seem to have any real end goal or purpose (or even a measurable progression at this point), I am confronted with family members that are dealing with very real, very diagnosable health ailments that could be terminal if not properly and timely treated.  Not whatever intangible chronic pain/chronic illness/chronic annoyance that I deal with, regardless of its various tentacles.  Really serious health ailments that literally mean the difference between life and death.

I have to put myself in check for a while, because things could be a whole lot different for me.  Instead of vague (but constant) symptoms that cannot be diagnosed with any blood test or other definitive detection method, I could have very real issues that—although treatable—are potentially terminal.  That should put things into perspective.

I can live for a long, long time with annoying and disturbing (even if not fully defined) symptoms.  But I need to be a source of support for my dad and others that are dealing with other health issues.  A rock.  Something stable.  Things seem upside down only because I’ve spent three plus years going through tests, doctor visits, specialty consultations, and questions for chronic symptoms, without any real or tangible answers.  But my dad and others like him were broadsided with much more serious health issues.  I am eternally grateful for the speed with which his diagnosis was made, and for which the treatment plan seems to be coming together.  But I quietly (and quite shamefully) lament that my issues do not have a more defined path.  That’s really messed up, I know.  Selfish, even.  But at least I’m predictable.  And stable.

Now, though, I do get to be a source of knowledge on all things medical.  Like reassuring my dad that he is fully entitled to call his doctor’s office and get a copy of his pathology report without scheduling another appointment.  Because it’s his health information, and he has a right to see it.  And pushing him to check on how quickly tests have been scheduled, reminding him of your experiences that the scheduling honchos for the doctor’s office and radiologist’s office do not always convey the urgency on the first communication.  That it is OK to pester and question.  Because it is his health, not someone else’s.

So maybe this is a messed up version of a M. Night Shyamalan movie, where my medical experiences over the last three years, although not entirely satisfying or fruitful for me, were all for the purpose of…helping my dad through his very serious medical issues.  So that I can make sure that he is going to be just fine.  Maybe I have become the rock, since rocks are stable and I am, after all, stable.  Up is down, left is right, and my strange medical journey has led me here, to be a source of confidence, comfort, and knowledge.  I’ll take a lifetime of annoying, chronic issues that are undefined, if it means that I get to materially help and advise my dad and my loved ones around me.

Vertigo: My Turn On The Tilt-A-Whirl

When I was young, my parents took the whole family to the county fair. As many county fairs are, this one was fully equipped with rides and games. You know, the kind of transient outfit that rolls from fair to fair, with a small Ferris wheel, a ring toss, a get-the-ball-in-the-milk-jug, maybe a fun house, and a tilt-a-whirl. A carnival on wheels. Cotton candy and corn dog stands and all.

Somewhere in the visit, the family decided to ride the tilt-a-whirl. These metal cars with fading and chipping paint in what used to be primary colors, that go in circles, all the while the cars themselves spin around on their own axis. Spinning cars going around in circles. Often times in opposite directions. At a high rate of speed. What’s not to love? 

We got on, and it spun us around and around and around. As designed, as planned, without hidden agenda or ulterior motive. A whirling dirvish of a ride. By the end, there was enough tilt and whirl to go around for everyone. 

Apparently my sister and I loved it. But my parents did not. Oh, they held it together for the good of the outing, but they later admitted to each other that the tilt-a-whirl had made them physically ill. Dizziness, nausea, and a sense of disorientation. I prefer not to ask how they got us home in that condition. In the era of no car seats, lap belts only, and front seat toddler car riders, it’s amazing any of us survived trips to/from home everyday. But we made it home safely, albeit with ill parents. Needless to say, my parents have not ridden the tilt-a-whirl, or anything like it, since.

My parents chalked the experience up to a sign of old age. That they were no longer capable of spinning and twisting and accelerating through portable and compact amusement rides without physical consequences. And true to their word, they have avoided spinning, dizzy rides. The signs of getting older.

Now, I’m about the same age as they would have been at the time of the tilt-a-whirl debacle. And I have not been on any spinning rides recently. But here I sit, with a sense of vertigo. Not constant, not predictable. Just…well, a feeling more than anything. Short bursts, instant discomfort, the feeling of swelling behind my left eye. And a subtle movement of light, dark, and inanimate objects around me. Not the spins. Just a moment of disorientation in my left eye. No nausea, but a feeling of ever so subtle change in vision and loss of balance. Almost a brief sense of falling. Literally a split second, and then over. Always in the left eye. Sometimes when I stand up after sitting for a while. Sometimes while watching TV or looking at bright lights. Sometimes while standing on an elevator. Always unpredictable and unwelcome.

The thing is, I can’t chalk this up to old age. Or a random carnival ride at the local county fair. No, given my interesting medical history (at least the recent medical history), I must conclude that this is something else. A flare up. Probably an exacerbation. Maybe a relapse. Hard to be a relapse when there has been no confirmation of diagnosis. But you get the picture.

I’m hoping this is temporary, and a sign of stress and anxiety. But I am concerned this is just a warning sign. The canary in the coal mine. That things are slowly progressing. To what end, no one knows. But round and round we go. If only I could just make a choice to avoid the tilt-a-whirl from now on, and this would all go away.

To Disclose Or Not To Disclose: Hillary Clinton, Her Health, and the Coming Storm


I write often about the issue of whether to disclose health issues, when to disclose, how to disclose, what to disclose, why to disclose, etc. It’s obviously an issue very personal to me, given the anonymous nature of my blog. I choose not to disclose at this stage of my health situation. That’s what I’ve decided is best for me, given the uncertainty around my particular situation, and the need for avoidance of the unavoidable questions that will follow. 

But that’s me.

I suppose if I was running for the highest office in the land, to become the leader of the free world, to assume responsibility of being President of the United States…that maybe my approach would be different. Maybe. Or maybe not.

A lot is being written and said about Hillary Clinton’s “health situation”. I mean, just Google the words “Hillary” and “health”, and see what comes up. It’s scary. Lots of speculation out there, based on sporadic anecdotal evidence. Coughing fits. Facial tics. Stumbling. Speech problems. All in bite size form, and preserved for all time on YouTube. 

What could be just an unfortunate series of minor health issues, has been blown into orbit, with wild speculation about whether Hillary is hiding a serious illness. Like Parkinsons. Or MS. Or some other yet to be named chronic illness that has yet to be disclosed. God forbid. Because that would deem her incapable of serving as President. Or so the rhetoric goes.

The reality is that Hillary Clinton is in a bind. From my perspective, we don’t have an absolute right to know her health history or possible health situations. It’s irrelevant. Inconsequential. And completely off topic.

Nonetheless, her failure to immediately disclose her diagnosis of pneumonia sent shockwaves through the inter webs, with folks deciding that this just proves that Hillary Clinton is not trustworthy. Not honest. Not completely forthcoming. Not fit to be President. Because, as I’ve written before, the right to know carries with it the right to judge. To judge whether we deem someone’s medical situation to be sufficiently serious enough to justify their behaviors and actions.

And this whole situation caused Hillary Clinton to be even more forthcoming about other health results, including a recent mammogram result. Because we, as American people and potential voters, have a right to know all of these details. The intimate, gory details of her health history. I think that is the elusive #11 in the Bill of Rights. But don’t ask me about the first 10.

On the other hand, it is relevant in relation to her capacity to serve as the leader of our country. Someone with a demanding and grueling job, with the power to shape our physical, financial, and spiritual well being. So…shouldn’t we expect there to be a clean bill of health? That there are no limitations to her ability to perform?  That she won’t have “off days” like so many of us, and that she can sustain the constant pressure of the job for four long years?

I wrote some time ago about the maxim, First Do No Harm, in relation to the pilot with undisclosed health issues that crashed his commercial plane, killing himself and others. Meaning that there are obviously limitations to this idea of non-disclosure. That while disclosure may not be required, discretion by the individual is required. As in, the discretion to pass on tasks or jobs that or health dictates may be unsafe or unadvised. 

(On a side note, it seems almost impossible to believe that we’ve never had a President with cancer, Alzheimer’s, or other serious illness while in office, at least in the modern era. Almost too good to be true. But it also sets the bar pretty high for expectations for the next President.) 

Let’s be clear. This issue of the right to know isn’t limited to presidential candidates. Hackers recently publicized medical records for Simone Biles, the celebrated U.S. Olympic gymnast, revealing her personal medical history. And the news media publicly ate it up, all the while proclaiming outrage, the voyeuristic irony of it all being lost in the shuffle. We’re in this era where undisclosed medical conditions are deemed to make an individual deceitful, not forthcoming, and not trustworthy. Even if they have no bearing on a person’s abilities (or character) at all.

I truly hope Hillary Clinton has no major medical maladies, illnesses, or conditions. But I won’t think less of her if it turns out she does. And I won’t think of her as dishonest if she has failed to disclose something. Because if full disclosure of health issues is a right of passage for any job of significance, then I have a problem. WE have a problem. A problem that will eat away at our very core. Because God help us if the bar is set that high.

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