Quick Tips

When you go to medical appointments, have tests, or have an emergency, it is very helpful to have a concise document (1-4 pages of info fits 2 easy-to-read double-sided pages) with the most pertinent information that is needed by care providers. Not only does it save time for intake interviews and filling out forms, but it reduces errors and omissions. When carried consistently, it also ensures that emergency staff have the essential information they need, even if an individual is not able to communicate or think clearly (due to unconsciousness or an acute crisis). Medical staff may copy the information pages, insert them in files, or use them to update electronic records. A 14 point font, and the use of bold and/underlined text help draw attention to items of critical importance, such as medication allergies.

The Basics:

Personal details (name, address, date of birth, sex, telephone number, emergency contacts), insurance info, basic medical background (e.g. including bilateral deafness from NF2, multiple brain and spinal tumors, implants/shunts with special instructions for surgery or imaging, allergies, current medications and dosing schedule; specialized info pertaining to seizures/organs/diet/communication access/mobility impairments, “brief surgical history list on reverse side” that lists date, type/brief description, surgeon, hospital, location), and sheet listing main doctors’ and surgeons’ roles and contact info. and admitting hospitals.

* suggestions and examples shared by Dorothy B., Jennette B. and Karen B. were of assistance in developing my document template. Email me for a copy you may use to fill in your own information.

Be sure to update and keep information current!

I was never one to attribute every ache, pain, or setback to neurofibromatosis type 2 (NF2). At the same time, until follow-up time elapses after an emergency event, primary disorder manifestations (lesions, scar tissue, swelling, increased intracranial pressure) should not be assumed to arise independently because premature assumptions may lead to inadequate attention to tracking changes that condition treatment decisions.

When I read, I simultaneously have an eye for material and conditions that apply to me and my situation (past, present, and future) specifically, as well as how information, concepts, and principles may apply generally. When it comes to something as variable and context-driven as NF2, I employ the same strategy in writing: trying to be as useful as possible in the context of an individual situation, erring on the side of reinforcing what my friend may already know, and adding general strategies and information to aid others. Take what is helpful, customize it, and leave what does not apply (or store it in the back, perhaps to use down the road).

In response to “at least it is not NF2” [caveat: information offered informally, from memory, all disclaimers apply, but I am happy to help identify primary references and experiential illustrations]:

I am full of positive energy, while simultaneously grounded in the systemic realities of NF2. I hope he is not alone until he is assuredly stable. I am personally guarded here, and a bit concerned about his hyper-phasia and personality changes/behavior that his friends mentioned in an exchange with another friend. I am all for taking things moment by moment. Sometimes we do not make the connections as events occur, but I have seen and experienced many longer-term, yet within months’/few years’ time, consequences of what seemed like minor falls or accidents. I do not know what his intracranial tumor load is, but many people with NF2 have multiple meningiomas in addition to vestibular schwannomas. (“Kissing tumors,” meningioma neighboring VS, are common, and some of us have en plaque meningioma that line nearly the whole skull–I think my surgeon used the term convexity meningioma when he removed a large, vascular, patch of lesions covering over a full quadrant of my brain.) These tumors are usually considered as slow-growing, and are just followed in serial MRIs, with extra attention when symptoms and/or structural encroachment tilt the equation so that treatment benefits outweigh risks. Many of us impressively adapt to even very large tumors, as long as the changes are gradual. But extreme rapid meningioma growth in individuals with NF2 is not as rare as many sources claim. We need to pay attention to our bodies. A fall or change in balance and perception may itself be a _symptom_ of scar tissue or a tumor approaching a threshold in the way it is affecting the brain/body, and then that manifests in other symptoms like poorer balance, more and more frequent falls, seizures, weakness, pain/headaches, changes in appetite, uncharacteristic moods and behavior, motor, and cognitive changes–depending on the area/s affected. Minor falls and the like may then trigger actual brain swelling or rapid tumor growth. [There are several theories to reflect this sort of delayed-reaction or cumulative model.]

My conscience directed me to keep you and others aware of these possibilities. I also recommend for everyone with NF2 to have a big-picture neurosurgeon who can match scans and tests with everyday presentation, and is always kept in the loop. Document, document, document as anything occurs, in case it is necessary to connect more dots.

Arms and Hands!

And so it begins again. Another voyage of discovery, prompted by experience and unanticipated convergence. Compassion paired with analytical distance.

I gave him tennis balls and showed him some basic things he can do to regain strength and dexterity. I also predicted he would be able to juggle all three while riding his unicycle the next time I see him. ;-) His wife demonstrated the massaging potential before I suggested it. Keep moving. He is receiving PT at home, and they will probably give him thera-putty and show him a lot more he can do with soup cans, playing cards, coins, and similar household items. A lot comes back just through increasingly taking on one’s own self-care, and I still use my sheets from inpatient and outpatient speech/language, occupational, and physical therapy. His therapist will tailor his program to him, so I didn’t bombard him days before surgery. We should not do too much too soon. Everyone is the same in that we are different in our perceptions, reactions, and micro-level trajectories.

After another challenging steroid taper, I had great difficulty trying to lift and fold hand towels a year ago. Then, some starts and stops, and then all-of-a-sudden, a switch flipped, and I was maintaining my household again and passing the neuro rehab driver’s evaluation. Strength and energy continued to build. I ventured, and continue to reclaim my repertoire. I am amazed everyday at how much has, and continues to, come back for me (for the fifth time, from scratch, in this lifetime). Truly humbling; actions are grace. It wasn’t expected, let alone guaranteed. I honestly believe (still, after all these years!) everyone has a similar level of healing capacity–the time line and specific outcomes are just a giant question mark (and socially dependent, I must add). Survive the backsteps, and keep returning to what we are called to do, in whatever form possible. And plans propagate reality–the positive uncertainty. Fill that space. In flux of an influx. (I am on the cusp of bringing out M-word references coinciding with other movements, past and present.)

In what capacity do we serve best? Here, now.

I continue to think about many of our friends who need strength right now.

The scan itself went great. I’m glad I had better techs this time! Excellent stick for the contrast, and the machines just keep getting faster and faster, and more comfortable!

I use a damp washcloth over my eyes, to sort of shield/cool the eyelid that has a goldweight insert. I think this is actually great for making the experience feel more like a spa treatment or something (not that I’ve had that experience…), protection for dry eyes, and deterence from noticing the confined space (which didn’t bother me in the early days, but has since then required various mental contortions to tolerate). Not particularly easy for some of the multi-hour scans I’ve been through. This was a smooth ride overall, though! Kudos to the local imaging company’s machinery!!!

After lunch and a nap for me, we looked things over.

Ummm, no comment right now. I feel decent overall. No marathons in the near future, but I’m cool.

We’ll see how things go.

P.S. I was offered ear plugs at the start of the scan. (Cue laughter…) An observer noted that the tech was talking to me when I was pulled out for the injection. I could not hear or see anything at that time. “She can’t hear anything?!” This is why it’s kind of nice to have an observer.

Ah, the pervasiveness of trust in everyday life!

“The uncertainty is what holds the story together.” —Paul D. Miller, AKA DJ SPOOKY THAT SUBLIMINAL KID

Several months ago, I spontaneously chose a collection of music CDs from one of the world’s best public libraries. What I grabbed spanned across several racks/genres. I’m open to new sounds with my ABI–always searching and expanding, being receptive to something completely unexpected. Other things popped up, and I didn’t have a chance to listen to things repeatedly, like I pretty much need to for most things (with the exception of distinctive tunes I know well from before I went deaf–the ones I revel in naming without any hints/context*).

I have a tendency of knowing various things I like, when I see/hear/feel/experience them, but not having some label that allows me to explain what it is I like. (This is common, though not always with-respect-to-music; many people–including my much younger self–categorically exclude items from what they expose to themselves.)

I mix up what actually falls under one category with another and so on–particularly when it comes to music. It’s just how I am.

This tends to make it more likely that I stumble upon something, rather than find it because I’m actively searching for it. (Okay, I do that with books, art, movies, ….., too.)


the quick tip (or what generally works for me… something I do and didn’t realize I did so much until relatively recently–when I find myself counting out loud even more than just in my head–the “ONE, TWO, THREE __ UP!” I use to focus all my attention on getting up, down, out, and otherwise, so I’ve got rhythm and enough balance (grace?!) to keep my center of gravity within the forgiving zone that keeps me from crashing into unforgiving surfaces.) Compensations, adjustments… amazing, really!

By the way, I’m not a very good dancer. I’m not as self-conscious about it as I used to be–thanks largely to nephews who are happiest when I’m making a fool of myself, and therefore largely supportive of even sincere efforts to “dance well.” I must say that dancing’s more fun after becoming adjusted to an altered sense of space and movement ranges, than it was when I was an early adolescent. But, of course, there were many changes that were gradual, incremental. And for those I’m thankful. The difference between inhibiting a semi-particular state of existence and constantly changing. (Though I know we’re all constantly changing on some level…)

Ok, so just like music, art, poetry, and a lot of research out there:

it’s not always what is there that matters so much, but what it leaves for others to take from it, add to it, and that is up to each of us. When something’s new, it’s easy to see how a general guideline should come from it. (It’s what we know best at the moment, and the future presumably follows from, and is conditioned by, the assumptions of the present.) With some distance from the “Ah ha!” moments, more and more (overwhelming?) possibilities are there, if we’re receptive to considering them.

Those decisive moments, though–how many times do we decide, without realizing we’re “a decider?” And how many times do we think we’re at a defining moment, when it plays out that other factors are so much more important than a single thing we did?

* U2‘s “Mysterious Ways,” was the winning tune, most recently.


Bugger! I did it again: Started with a specific thought projectory in mind, and took several tangents that put me somewhere completely different than where I intended. (Not a terrible direction, or anything like that, but I’m sure it’s not particularly pleasureable reading for others — and it failed to capture the serendipitous tag: The book that the CD with the quote, was collected on an additional trip to the same library, but different section — in a familiar topical area within non-fiction, and it pretty much jumped out at me while I was just glancing at the shelves. So that was really cool because I picked up the music CD first, thinking it was a cool name at least worth checking out. And then, without having any idea there was anything else related (by artist) in another medium, that existed, I found the book/pamphlet. It’s always SO MUCH cooler to get a glimpse of the thoughts behind the creations, not for the sake of legitimacy, but for the sake of imagination, perspective, a view from within the workings of other minds. (And there’s resonance in there…..)
In any case, this thing of jumping around, after I start talking about one thing, it happens a lot more when I’m talking with people. Sometimes I’ll realize I’m doing it, and be able to get back, but other times, I’m fairly sure, I leave a path of confusion and contribute to fragmented thoughts others have as hazards of interacting with me. (My mind was always highly relational (isn’t everyone’s?!), but there’s so much more that’s invented to make up for the “blind spots,” left by the gaps in common-sensical auditory information that’s collected in the space between having brainstem-stimulated hearing vs. the hearing that had the benefit of associating with the cochlea and auditory nerves prior to being processed by my brain. And, of course, there’s more — Scott Adams (Dilbert creator and “crazy talk, there can only be one wally,” and other great funny phrases generator, who’s been entertaining this freeDaily Dilbert” subscriber since the early 1990s), healing neuro pathways… (pssst! I’ve experienced this phenomenon, though with different manifestations of effects, from seven+ brain surgeries, and probably even more from the tumors that remain–which I’m cool with; my expectations are reasonable (most of the time).  It’s just neat to notice that Scott pretty much relaxed, experimented, and the body kind of took over with the unobservable gig that it does so well.)  Check out more of his writing–it’s good stuff, not over-hyped, and way funnier and more coherent than what I’ve been offering recently.  (baby steps….   wait!  There was a “What about Bob?” post I had in mind for blogging about.  Which Bob was that?!

Ok, I’m relaxing… maybe it will come back to me.

The toilet is not the best place to vomit. Sure, it may be easy clean up (assuming nothing gets on you or surrounding areas), but it’s definitely a major hazard leaning over the porcelain, or even just rushing to get to it. Too unnecessarily stressful, for sure.

The second option was a solid wastepaper basket. Good for portability, not so bad if you have someone around to rinse it out, but it tends to be overkill and the girth of the opening is not necessarily conducive to cutting-off spit strains. Therefore, it’s far surpassed by a 32-ounce plastic cup. Portable, convenient, easy to wash thoroughly, perfect for travels, and it does not demand any strained bending-over that places pressure on the head, neck, and spine. If one expunges liquids or a liquid/chunks* mixture, fine. If not, fine–the handy container can be kept standing by indefinitely, much like operators for many must-have impulse items seen on TV.

Sometimes nausea and vomiting just come with the everyday territory (like when you’re withdrawing, for many months, from long-term use of a drug like prednisone), but other times repeated episodes of nausea are red flags that something’s going on internally, and your neuro should be consulted. I thought today’s was the culmination of a coughing/choking spell that spun extra long, combined with the heat. I’m hoping to sleep it all off tonight.

* I do recommend discarding these in the toilet, rather than down a sink.