I’ve experienced a lot of problems with my eyes.  Optic Neuritis (more times than I can count), Macular Edema (a few times), Iritis, Iris Nodules, and I’ve had Ocular Hypertension (not to be confused with Glaucoma) since the late ’90s. Other weird things with my eyes/vision: an inflammatory event that precipitated the need for a lacrimal gland biopsy.  Side note: you should consult with your doctor (of course), but I cannot personally recommend you ever have a lacrimal gland biopsy.  But if you do (really, really) need one, make sure to have (more than) adequate sedation & boatloads of topical anesthesia.  Because once your head is clamped into that hold-still-don’t-move-or-your-eyeball-might-be-inadvertantly-sliced-open contraption of a “brace” & your wrists are secured to the armrests (seriously), you are, literally, unable to communicate to your doctor that It hurts! More drugs, NOW, please! Owww!!!).

I consistently have abnormal results on Reverse Pattern Visual Evoked Potential tests (which, I think, is a misleading way to word a finding: because if the reverse of something is being evoked, shouldn’t it be abnormal? so confusing).  As well as atypical cataracts, sensitivity to bright lights, and “severely atrophied optic nerves.”

Frankly, if I were my optic nerves, I’d be withering away in an attempt to hide or get the heck outta Dodge, too. With all that wacky stuff going on in my eyes, it is clearly not a fun or safe place to be. I feel as if I owe my eyes – & my optic nerves, most especially – an apology for all they’ve been put through. (but they’re probably not speaking to me anymore, and i cannot fault them for that)

Several weeks ago I began having a feeling of fullness & pain behind my right eye whenever I would bend over.  The severity of the pain & the length of time the pain would last (after i stood back up) increased, so I went to see my ophthalmologist.

Side note: I love my ophthalmologist! If you live the Greater Houston Area & you need a wicked-smart, talented, always-listens-to-you & gives-you-as-much-time-&-attention-as-it-takes, kind, patient & friendly ophthalmologist – who also has a keen & oft-exercised sense of humor – then go see (hah! pun intended) Dr. Timmy Kovoor.

In addition to the new/odd eye pain/stabby headaches that happened only when I bent over, I’ve been bumping into things a lot more – catching the edges of hard surfaces with my shoulders, knees & (littlest piggy) toes. (great, now I’ve got that “Head, Shoulders..” kid song playing in my head and the This Little Piggy Went To Market poem stuck on repeat).  I’ve been knocking over objects (glasses of water, half-full coffee cups, bottles of medication, my reading glasses & phone, etc) when I reach out to grab said items.  Things just don’t seem to be where I think they are.  Then those things have the nerve to punk me by taking suicidal leaps out of cabinets or off tables & counters when I try to grab hold of them.  Side note:  It’s a bad sign when random objects, pieces of furniture & door jambs band together with your optic nerves in a grudge against you. (maybe they’re unionizing against unfair working conditions?)

After a thorough eye exam, including several tests, Dr. K reported that he believed my vision was not the cause of these new symptoms (eye pain when bending over, the rebellious actions of things in my environment that resulted in objects eluding my reach or furniture & doorways using sideways-gravity superpowers to pull me into them). Dr. K referred me to a neurologist for further evaluation, and assured me that this neurologist was very good at this job & would take wonderful care of me. Honestly, I don’t know if my eyes/vision not being responsible for these new symptoms is a relief, as in “good news,” or not.  (with this body, I never know…)

Long story made only slightly less long, I had my initial evaluation with the new neurologist & he attempted to explain to me that what’s been going on is not about me not accurately visualizing where objects are when I reach for them (or try to pass by them, or through them), but is much more likely about me not accurately perceiving the location of my body, especially my limbs.

(this is not the exact conversation we had – I didn’t take notes – but it is the essence of the conversation we had)

Me:  So, you’re saying I don’t know where I am?

Him:  Basically.

Me:  Like, my GPS is malfunctioning?

Him:  Not exactly.

Me:  Like, I mistakenly conclude that my body takes up less room or that my arms are longer than I think they are?

Him:  No, not really those things.

Me:  Like…

Him:  Oh, right. You’re a writer.

Me:  What? Wait. Is this some condition commonly associated with “artsy” people?

Him: No. It means you’re the kind of person who uses analogies & metaphors to better understand things.

Me:  Ah, guilty! So, what’s the best analogy or metaphor for what I’m experiencing?

Him:  You had it closer to right the first time:  You don’t know where you are.  But, more specifically, you don’t know where you are in relation to other things.

Me:  Well, that’s better than not knowing who I am, or not knowing who other people are, at least. Right?

Him:  (smiling) Probably.

Me:  Probably?

Him: More probably than improbably.

Me:  Okay. I’ll take that!

Him:  (smiling) ((shakes head, then nods head))

Him:  Now I see why Timmy said you’re one of his more interesting cases.

Me:  Because my body is messed up in a variety of unusual ways that seem to fit no easily recognizable pattern known to existing medical science?

Him: (still smiling)  That, and because you navigate everything with a sense of intense curiosity & sideways humor.

Me: I won’t even try to argue with the “sideways” descriptor. So, guilty again, I guess.

Him:  Exactly. That, right there.

And we both ended the office visit smiling, which – in my experience – doesn’t really happen very often.  If you need a neurologist, I can recommend Dr. William Irr as highly as I recommend Dr. Timmy Kovoor.

~ ~ ~


In terms of training for the 2015 New York City Marathon with Team Fox, I’m still keepin’-on-keepin’-on in spite of all the wonkier-than-usual health issues.

As always, I deeply, passionately, madly desire your support:  Please consider a donation to the Michael J. Fox Foundation for Parkinson’s Research in honor of my efforts. (just click on the underlined text & you’ll be taken to my personal fundraising page)

In terms of Other Things, I’m feeling a mite disheartened in regards to my trip to NYC for the marathon.  First my planned lodging, and then my back-up lodging, fell through.  And now I cannot find hotel/motel accommodations that I can afford.  I’m hoping – in that overly optimistic way that I have – that some great lodging deal will appear out of thin air (does anybody have a personal connection to Penn & Teller or David Blaine?) – or that a friend, or a friend of a friend, will miraculously offer me a place to stay for the weekend of the marathon.  Otherwise, I’ll be sleeping – along with my service dog – in my rental car.  In New York City.  Which, now that I think about it, may not even be legal.  So I may have to drive to some part of New Jersey for any parking-&-sleeping.

In spite of all the challenges, health-&-travel-&-lodging-wise, have I mentioned lately how thrilled & excited I am to be a part of Team Fox & how much I’m looking forward (with ridiculously giddy anticipation) to participating in the NYC Marathon with all of my (not-yet-met) Team Fox tribe?

Thanks for reading.  And SupercalifragilistiThankYous for any & all donations to MJFF on my behalf!!!