Being Invisible

Apparently I missed the official Invisible Illness Week (by just a day), though since I didn’t know about it until last night I suppose that can be excused. I found it while I was looking at some resources on ButYouDontLookSick.com (which is famous for its “spoons” metaphor for relating the experience of chronic illness to those who have not experienced it). Apparently part of the activities for the week for those participating has been a blog meme of 30 prompts to help explain and advocate regarding each person’s particular condition and how to relate, and so on. It feels a little melodramatic to me, since I’m used to connecting with folks about my own situation in relatively simple terms, but figure it can’t hurt to show solidarity (and really, I’m no stranger to melodrama anyway). So, here’s my entry:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: McArdle’s Disease (Glycogen Storage Disease Type V), a congenital inability for skeletal muscle cells to use energy stored in the form of glycogen (see Wikipedia or the Association for Glycogen Storage Disease pages for more information).

2. I was diagnosed with it in the year: 2009, with a very remarkable and unlikely set of circumstances for which I am unendingly grateful – it was like waking up for the first time in years.

3. But I had symptoms since: about age 5, though not persistently until I was 7.

4. The biggest adjustment I’ve had to make is: recognizing limitations and abiding by them; anyone who knows me knows I’m big on (over)reaching for the stars, on an ambition to do everything I can to enjoy a beautiful world through all its modes and means. Knowing where my boundaries are, and respecting those boundaries instead of stubbornly pushing myself, will probably always be my biggest challenge. I’m always thinking that with the right management strategy I can get back to moving mountains, instead of realizing just how much really is out of reach.

5. Most people assume: most people don’t assume much at all about me – the disease is invisible, after all. Speaking more generally, people do tend to assume that if something’s difficult, a person can just try harder or have a more concise focus of will and overcome the challenge. There’s a finite limit to this kind of thinking, and a point beyond which more effort is actively and exceptionally destructive to people with McArdle’s.

6. The hardest part about mornings are: if it’s been any kind of decent night’s rest, then when I wake up in the morning I feel mildly euphoric – it’s the one time in the day when I am not exhausted, nauseous, or hunched over in pain. Getting out of bed means I have anywhere from “between bed and bathroom” to 15 minutes or so (30 if I’m just going straight to sit at the computer) before the nausea kicks in and it all starts again.

7. My favorite medical TV show is: why is this prompt on here? I mean, is there even one on right now that is not “House”? (which did a shout-out to McArdle’s when trying to identify the source of someone’s pain once, but did the not-recommended ischemic forearm exercise test for diagnosis; I suppose that’s still a common practice with doctors less familiar with the condition, but they should know to look for the most up-to-date info on the techniques they portray)

8. A gadget I couldn’t live without is: there’s no good assistive technology for McArdle’s, but probably the one that really goes for me is a pillow – anywhere to lay my head and recover from the stresses of the day. Oh, and a ginormous jetted tub – long hot soaks do wonders for cramped muscles.

9. The hardest part about nights are: actually nights aren’t that bad unless I’m in the middle of an episode – or actually manage to give myself an episode during the night (ugh – then there’s just no sleeping after that). At least, I should say that they’re not bad now, post-diagnosis – McArdle’s affects all skeletal muscle, including the diaphragm, which leads to sleep apnea (which can be exacerbated by metabolic acidoses, a potential side effect of over-reliance on alternate metabolisms that are themselves also a side effect of McArdle’s). Before that was all worked out I was actually developing a phobic reaction to the thought of going to bed, since it was so torturous to wake up as tired or even more tired than going to bed, and be so completely filled with nausea and mental fog in the mornings. Not a pleasant memory for those 15 or so years (the sleep stuff didn’t come with the initial symptoms, but built up over time).

10. Each day I take how many pills: nothing related to McArdle’s – there’s no medication that can help it (ingestion of supplemental myophosphorylase enzyme doesn’t help, as it’s not transported to the right location in the cells before it’s destroyed). I do drink a fair amount of baking soda to keep the acidosis down and help the kidneys flush things out, and some simple antacids (since acidosis throws off the gastric system too – that being the only natural source of bicarbonate processes in the body which gets tapped out pretty fast).

11. Regarding alternative treatments I: think they’re a bunch of hooey. Hooey that can make you feel good – the placebo effect is real, after all, but the mind-body connection does not go much beyond relaxation and endogenous opiates. “Feeling good” can only take one so far – and if I fail to be aware of my situation, and even my pain, it’s a lot more likely I’m going to do something that lays me out for an entire week. Also, it can be tough to be gracious when being told how much someone’s Aunt helped so-and-so with such-and-such and they’re sure she could help me with this. Listen, if it doesn’t produce glycolisis it won’t help, period – otherwise you just get a McArdle-ite with well balanced chakra, but still a McArlde-ite.

12. If I had to choose between an invisible illness or visible I would choose: visible, but only if it’s not also odiferous – don’t want to smell bad if I can avoid it. With visible at least people would be aware that there’s a deficiency in place that’s being heroically overcome – instead of a pasty guy who just looks like he’s out of shape.

13. Regarding working and career: I have been blessed with talents that allow me to pursue cerebral endeavors – I can sit and think, instead of haul wood and be on my feet all day. I am so very, very grateful for that, otherwise I would be near dead all the time instead of occasionally. Even then, I still have to take my rests, and retirement can never come soon enough.

14. People would be surprised to know: I have no regrets. I’ve given up a lot to McArdle’s, things I really loved doing – martial arts, parkour, dance, a lot of out-doors stuff, etc. But before it made those impossible I did just about everything I conceivably could – I didn’t waste my time, and though I may wax nostalgic and miss it at times, I’m not mourning for anything that “could have been”, but rather, “man, wasn’t it awesome when…” Good times.

15. The hardest thing to accept about my new reality has been: limitations, as mentioned above, and a recognition that I almost never feel entirely like myself – and this one is difficult psychologically, in recognizing that what I define as “me” is at the whim of so many chemical balances and miscellaneous influences, instead of being a force of will and spirit that can overcome trial. “Me” pre-nap and post-nap are very different people, with post-nap-Me being more subdued, patient, loving, helpful, humble, etc. – but not being able to clearly recognize that pre-nap. That, and drinking 2+ gallons of water a day – but that’s mostly a matter of knowing where the restrooms are.

16. Something I never thought I could do with my illness that I did was: have a normal day. They’re few and far between, but they do show up from time to time. I’m careful not to push it on those days and sabotage them, since the normality only extends so far, but there are those days when I feel amazingly normal, and thus amazing.

17. The commercials about my illness: don’t exist – 1:100,000 is not a very profitable demographic, especially since only 10% of those are typically diagnosed and there are no treatments to sell to anyone.

18. Something I really miss doing since I was diagnosed is: the meditative state of mind-body connection in physical movement, especially parkour and urban exploration. There’s still many a building I see that I would love to run up the side of and see the different world from up-top. Oh well.

19. It was really hard to have to give up: assumptions: that extra effort can over-come, and I just needed to try harder. Helping my wife with more of her projects and ambitions, and sometimes even getting simple chores done. Oh, and Twister™ – turns out it’s impossible to play it with McArdle’s without things going badly very, very fast (as in, “5, 4, 3, 2…”).

20. A new hobby I have taken up since my diagnosis is: competitive whining? I’m always picking up new hobbies, pre- and post- diagnosis, so this one doesn’t count much. I’ll say “cello” for now because that was the most recent.

21. If I could have one day of feeling normal again I would: roughhouse with the kids. Run. Climb things. Wear myself out and just feel old and out of shape, instead of crippled with pain, cramps, and the impending weeks of recovery from damaged muscles and clogged kidneys. Man, I would fly!

22. My illness has taught me: patience, empathy, and gratitude.

23. Want to know a secret? One thing people say that gets under my skin is: nothing. Lack of recognition, lack of empathy, lack of awareness is worse than what anyone actually says. Followed by that thing about their Aunt’s homeopathy skills.

24. But I love it when people: know that it’s so very hard sometimes, and love me anyway. When they understand that it’s not a matter of not wanting to help, and not for lack of trying – but that sometimes I have hit that immovable object (and frequently at force) and need a break (or a break-down) through no fault of my own.

25. My favorite motto, scripture, quote that gets me through tough times is: “…the Son of Man hath descended below them all. Art thou greater than he?” (D&C 122:7-8)

26. When someone is diagnosed I’d like to tell them: I don’t know that I’ve encountered anyone who’s been newly diagnosed – it doesn’t happen very often given the rarity of the condition. But I would say: “we’re here for you, and we understand.” (speaking collectively of the very supportive McArdle’s community).

27. Something that has surprised me about living with an illness is: how very stupid I can still be about it all, and (separately) how often I find myself grabbing or leaning on things in the general course of a day. When the heck did I start doing that?

28. The nicest thing someone did for me when I wasn’t feeling well was: hugged me, put my head in her lap, and stroked my hair (guys like it too). My wife is awesome.

29. I’m involved with Invisible Illness Week because: this kind of invisibility is not a super-power. And honestly, if you take number-of-rare-diseases × prevalence ÷ the-general-population you end up with something like 1 in 6 people live with this kind of stuff, so there’s a lot people can do to increase their awareness, understanding, and empathy of their fellow man.

30. The fact that you read this list makes me feel: astonished – I’m a wordy person, and this was a lot of stuff to get through. And grateful that you took the time to read it – words of encouragement (up to and including, “Man up and quit whining Nancy” [no offense to the Nancys of the world]) are appreciated. Go find someone who needs a hug and hug them.

Work Credofesto

Doing work is not enough.

Getting work done is not enough.

You will not get gold stars for neat handwriting,
complete paperwork, or Playing Well With Others.

Teamwork means removing yourself from the equation,
not splitting the credit.

You are not here to find yourself,
your soulmate, or for the Master to Appear.

Your job is to own the problem,
solve it better than it’s been solved before,
and make sure it stays solved.

If you do a good job,
you’ll get harder problems to solve.

Success, recognition, and mastery come from results and luck,
not effort. And from results only sometimes.

You fail only when you give up, and sometimes giving up is necessary.

Rinse & repeat.

Singing Out

Rachelle’s been going through her music library identifying various snippets to be used as potential ringtones, and one of her recent favorites is “Annie’s Song” by John Denver.

Most of the versions of this out there are strangely quiet, and while it would be possible to go through the various exercises to transcode it into something I could manipulate and boost the volume, I decided to go a different route and just make a new recording.

By simplifying the song to a single instrument from its component layers it should be much more clearly audible, effectually increasing the volume beyond the literal increase it also received. We’ll be testing it out on her phone (since resonant frequencies with the speaker will also matter), but for now I offer it up for public review:

The recording was made on my iPad sitting on a chair next to me, using the built in microphone. It definitely flattened the sound a bit, but the quality is surprisingly clean given the ad hoc setup. If you listen closely you can hear kids playing in the background, but they weren’t disruptive enough to necessitate re-recording. Nor did my stool squeak this time, or the bow scratch (I haven’t raised the A string at the nut yet, so this still happens sometimes), or the pitch get too far from target. All of those other things led to this being the dozenth take or something along those lines, and while it’s still not perfect (next time I’m using headphones to give myself a click track) it should serve its purpose as a ringtone just fine.

Oh, and it was transposed to G Maj just to make it easier to get the tonic on a fingered position so I could put in better vibrato.

Cheers!

Kicked Out of the Loop

It can be a difficult thing, balancing perspectives between short and long. Perhaps there’s a lesson to be learned from photography – the only way to have foreground and background in focus at the same time is to stop down the aperture, and that only works if you lengthen the exposure time; so to extrapolate, the way to have a clear focus with that kind of perspective is by narrowing your view and taking a good, long look.

Recently I had a pretty nasty McArdle episode. It shut me down hard for a couple of days, not really making it out bed for more than the essentials, and struggling through the motions for the next week. It’s getting easier, but will still be another week before I can get back into a considerably reduced exercise regimen (which is the recommendation for McArdle people, and also the cause of the problem at hand – apparently my VO2 max is a lagging indicator of exertion and does not work well for gauging level of muscular effort, leading to a dangerously disconnected feedback loop – the whole mess will have to be completely refigured).

The experience pushed me out of the home/career/self perspective I’d been maintaining, and forced me to face the immediate situation and condition. My entire focus necessarily changed to deal with it, and as a result my point of view kept coming back to questions of value – “is it worth it?” and “what’s the point?”

Not in any kind of depressed fatalistic resignation, but more of an introspective examination overshadowed by the very strong impression that today, I would be much happier on a park bench than in the office; more fulfilled quietly soaking up the grandeur of the world than perpetuating other institutions, objectives, and deadlines. This may not sound like a very profound epiphany, and I can’t think of many people who wouldn’t rather go fishing or just be outdoors than sweat and labor (even intellectually). What was/is striking about it is the intensity and immediacy with which it impressed me.

Of course the bills still need to be paid, and the family is rather fond of food, so even though that impression fits well with my long term objectives of retirement (or my really ambitious medium term objectives of retirement) I still have to connect that to the reality of where I am today, and what I have to work with. This is where the more profound considerations are happening, though I openly admit it may still be the afterglow from the episode (and thus not looking as long or as objectively as I think).

A sick day here or there I can handle, but with the prospect of potentially needing more time and/or an entirely different pace (what? not aggravating things to the point of illness in the first place? What a novel idea!), which is a very real possibility given the nature of the disorder, what level of engagement and personal investment can I realistically commit to? And this, balanced against the needs of the family: how do I tend to them at an appropriate standard of living without killing myself? Or put differently, without committing to a standard of performance I doubt my ability to maintain, or which can be undermined by unpredictable factors?

Nearly everyone faces that same question to some degree, employed by others (even the self employed are really just employed by their clients and the economic climate in which they operate) and trading application of self for remuneration that has a non-zero probability of drying up at any time. It’s possible if not probable that I’m just being skittish because I’m psychologically so close to the idea of that non-zero number right now that it makes it look much bigger, and may be clouding my judgement.

But would it be a bad thing to wish to be independently wealthy? Or that there could exist somewhere in the universe a configuration of work so ideally suited to my talents that I can work half the time and make twice as much (against those rainy days, and accelerating savings toward fiscal independence)?

More than anything else, the experience is forcing me to acknowledge the mortality of my limitations. I’m used to operating under the assumption that while things may be difficult for me, they’re still possible using some magical compensatory practice (increasingly “take more naps, dummy!”) and may just take a little more work. Now I have to admit the very real upper bounds of my own performance, and put those other ideas up on a shelf I can’t reach – rather predictably this is making me anxiously uncomfortable, and nothing is resolved yet.

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