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You influence more people than you realize. Do you notice how impressionable upon you some, even momentary, interactions are with certain people in your life? The same goes for what you put out into the world. I have been thinking about how I always had a tendency to think in terms of, “why not me?” when it came to the stuff that’s happened to me that many would consider undesirable, and “why me?” when viewing the parts that are more conventionally seen as positive. (This is a recurring theme, as I’ve written of it in the past.) Have you honored, through your deeds, the legacy of friends and family members who have passed? I find some solace in how I am mindful of those who came before me, and that I continue to do the best I can with what I have at any particular moment. Perhaps that sort of approach could help comfort and assure you?

This path meanders a lot. When I was in my late teens and early twenties, I realized what an asset my mind was in dealing with physical insults. I often expressed how thankful I was to have my mind–as quirky and weird as I always was and reveled in being. Little did I know that I would acquire substantial cognitive challenges in my late twenties and early thirties–thanks to a perfect storm of sorts–and somehow lose, regain, lose, and keep on building somehow even in the midst of losses. We are not forced to, but sometimes we choose to look at this gig or any state-of-being as definite, permanent, and static, when what we actually grapple with are the transitions and changes. In a single moment, we may feel completely displaced and out of sync, but that does not preclude identifying purpose and meaning, under any circumstance, at some time, and having a profound affect from there. Mattie Stepanek comes to my mind here, among others. You are such an empathic being.

I don’t know if it’s because that veil of “what disability and ‘dependency’ mean” was lifted at such a pivotal and regenerative time for me (late 1990s), or my repeated experiences of grace in being broken down to total dependency (and having to work collectively with all that that entails, but I’m just not buying into the hype that we, as a human race, can actualize communitarian interdependence if we limit ourselves by writing off “those who cannot take care of themselves.” That describes every infant out there, yet we find tons of meaning and inspiration in the percieved and actualized potential of those beings.

You guys can relate to this, I know you can: it is so much different to experience something than to observe it, imagine it, and judge “what it must be like.”

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.

Way back, someone had written about how sometimes as frequently as every day there was a period of time where he allowed himself to mourn his losses (and the losses of others in the world) and sort of wallow in pity… and that this was something that he did for a very short period of time, but he let it happen if he felt like it… and then he was free to move out from there and live.

When I first joined the Crew I remember asking about advice for dealing with whatever happened (I asked a lot of questions back then!) and I remember someone (maybe one of the giants you speak of, but they lived in this world just as we are doing) saying it’s seldom a particular state of being that’s so difficult to live with, it’s that initial change in state.

I put the two together… and soon I had turned outward (and inward at the same time) and I was getting that balance: It’s hard because we don’t want to let go of things if they can be improved somehow, yet we need to know when to just fly with it and improvise.

The thing is, if we let go of something and are still receptive for it to return then we can move on and if it does return, then we are surprised and delighted (breathing, walking, eating, days free of constant and severe headaches, mornings not filled with nausea, and hearing music in my experience). If it doesn’t, then we just keep on keeping on (a full smile, and I know there’s other stuff for me, but I don’t even think about them anymore so I can’t name ’em).

The reason why I’m “up” a lot of the time now and why the Crew rarely sees my “down” times is because everything is just part of a process now… and having come through a really rough few years of living day-to-day and experiencing total dependence on the people around me, I can use what I learned through those experiences to fuel my life every day. When I came out of my surgery in 1996, I couldn’t do anything for myself. At first it was pure torture because my body was completely out of control and there wasn’t anything I could do about it.

It didn’t take long for me to just totally give into it… and instead of fighting the dependency, I reveled in it as an experience. I was still very much determined to get myself back in shape to do things for myself again, but it stopped being about me fighting to get up a mountain and just turned into me traveling down the path, learning what I could along the way and not really thinking about where it was leading. That’s how I dealt with the cycles of depression when the uncertainties were getting the best of me.

It’s not that I’ve always been happy (or even that I always am happy happy all the time now), it’s just that going through the extreme states that NF2 exposes us to had to be for a reason for me and it seems like no matter what was/is happening to my body, the constant has been my ability to define what it all meant/means.

You are one of the “WOW!” people.
It doesn’t mean you’ll always be in a cheery mood, but if you’ll stick around a bit and give things some time then I’ll bet the better days will overpower the others. Please give it a go because we need you.

By the way, I despised the rehab people and hated it when people kept telling me to be patient during periodic fits of thinking things were going too slow. Everything looks so much better when looking back, though! I hope you get to do the same, although maybe a little different.