The wolves are in pursuit
Near the beginning of White Fang by Jack London, there is an extended scene where a man is alone by himself in the wilderness, pursued by a pack of wolves. He has settled down for the night and built a fire, which is the only thing keeping the starving wolves at bay. But he knows it is simply a matter of time before the fire dies down... and when
( Read more... )
What aspects of how you live your life now would you change if someone said for certain that you had Marfans?
Since having a child, I've been super-conscious of anything that could cause me to die; I feel an enormous responsibility to continue living until he's old enough that my death wouldn't be utterly devastating. So anything high-risk that I used to do is over with. If it's confirmed that I have Marfan's, then I will not return to rock climbing (I stop during pregnancy since I'm so exhausted anyway, but usually return to rock climbing after pregnancy); I may or may not return to bellydancing (depends whether I think I can do so safely), but if I do, I will wear a pulse monitor so I can stop dancing if my pulse rate rises above 110; I won't chase my kid around, pick up a heavy toddler, or do anything that could stress my heart; etc. I will assess pretty much every aspect of my life to determine where changes can be made so that I can maximize my chances of staying alive until my kid(s) are grown. A lot of the things I'd hoped to do during my life (for example, getting into scuba diving, martial arts, etc) will now be off the table. And there will never be even a chance of a third pregnancy, because I can't assume that much risk.
So unfortunately, for me, there will definitely be concrete changes.
Reply
Regarding the changes you're considering... well, I'm going to write for a while, and you can do with it what you will.
I was on the fence for a long time about being a biological father. I too was/am very conscious of the "genetic lottery" of Marfan's. As it happens, I'm in my late thirties now and still single, and for a variety of reasons I basically have given up any designs on children. In that sense, I'm not facing the same choices you are anymore.
My approach to my health sounds different from what I'm hearing you say you might do. Giving up contact sports was something I did early on - breaking a collarbone three different times was a significant incentive. :-, Exercise, even exercise that makes my heart beat quickly, is not something I'm going to give up. Giving up exercise like that would mean giving up dancing, swimming, playing frisbee-catch with friends, even sex. It would sap joy from my life to do so; I would be living in fear. I have enough fears in my life without being afraid of dying.
I'm single and unattached, so there's no-one depending on me to live - in that sense our lives are very different. Yet it's important to me to consider the quality of the life I live side-by-side with the quantity of life. I saw one of my grandmothers exist inside the shell of a body and the remains of a mind for years before she died two weeks ago. IMO, her quality of life was terrible, and that's not a life I would want. To me, living well is more precious than living long.
I also know that, physiologically, the body adapts to stresses. In order to maintain my health, I know I need to do these things occasionally to maintain its balance, strength and resilience. My body is really a "use it or lose it" proposition. I know I can't/shouldn't exercise in the way(s) that people without Marfan's do, but exercise is still critical to my overall health.
I've thought a lot about what would happen to me if the doctor said, "Hey, your aortic root is ballooning. If it keeps up, you're going to die. Your other option is open heart surgery." Heart surgery is a bitch: I might die on the table, I might die in post-op. Recovery from heart surgery is no picnic either. I've seriously considered saying, "Nah; thanks but no thanks. If I continue living, that's great. When it's time for me to go, no earthly power will keep me here, and until then, I'll just keep going as best I can." The best gift I feel I can give the people who love me is to enjoy my life & be prudent in living it; where & how one finds & maintains that balance is part of the great quest. "Life... and the pursuit of happiness" aren't usually qualities that Americans think of as oppositional, but you and I aren't "usual" people. (And you living in Canada, you might think of something else entirely.) :-)
I've been living with the reality of my own mortality for a while; Marfan's or not, these are some of the thoughts I've had and decisions I've made. If they resonate with you, that's great; if they don't, that's great too. I'll do my best to answer any questions you have, and I wish you a long and happy life, and a long and happy motherhood. May you walk and run and dance in love for the rest of your days. :-)
Reply
It may well turn out that way. :) Although my sister is very similar to me in terms of body type and mitral valve prolapse and such, so I'm wondering if my father has it and it's just a very mild expression in his case.
Giving up contact sports was something I did early on - breaking a collarbone three different times was a significant incentive.
You got a serious sympathetic wince from me. The only bones I've ever broken have been toes, and I can't even imagine the pain of a broken collarbone.
Yet it's important to me to consider the quality of the life I live side-by-side with the quantity of life.
It really helps, for me, that it's still possible to have a good quality of life despite giving up some things that I love. Being able to be there for my kid is the best thing I have going. I can give up being the mom who wrestles and chases, because I can still be the mom who sits on the couch and reads with him, does craft projects, bakes cookies, and snuggles together under a blanket on cold days. There is still a lot I can do with him, a lot of ways I can be involved, that don't place my body at additional risk.
As for bellydancing, I think I can return to it in a different way; no more exuberant saiidi steps, but I can focus more on technique that can be practiced slowly rather than requiring speed. Since I'm more into bellydance fusion anyway (meaning I'm one of those dancers who'd prefer to dance to stuff like goth or rock music than Middle Eastern music), it isn't going to enormously affect my dance style. It will prevent me from performing in a troupe or in student showcases where I'd be required to dance as part of a group, but that's okay.
I already thought of the "OMG ORGASM RAISES THE HEART RATE" issue and came to the same conclusion as you... there's just some things I'm not giving up. :)
"Life... and the pursuit of happiness" aren't usually qualities that Americans think of as oppositional, but you and I aren't "usual" people.
LOL, that a good way of putting it. :) I've reached the conclusion that I can still have a good life while giving stuff up, so that makes the sting of giving those things up much easier. It's still difficult, as an atheist who wants to experience a great variety of activities before she dies, to realize there's a lot of fun things that may now be too risky... and some deeply important things that would now be too risky... but the most important thing of all is the 3' boy sleeping forty feet away from me. Everything else put together doesn't begin to add up to the importance of that one. :)
If they resonate with you, that's great; if they don't, that's great too.
Some of it certainly did, and with the rest, I can easily see myself making the same choices were I in your situation rather than mine. :)
I'll do my best to answer any questions you have, and I wish you a long and happy life, and a long and happy motherhood. May you walk and run and dance in love for the rest of your days. :-)
I wish you the same. Well, with the exception of the motherhood part. ;)
I don't know if this is out of your scope of knowledge, but is it possible for somebody to have the Marfan body type and MVP, but not be in risk of aortic enlargement? Does MVP always present aortic enlargement as a risk?
Reply
My understanding is that most of the symptoms are independent of one another - that one system's laxity may not be present in another. While floppy joints and flat feet are essentially the same, floppy joints and screwy valves aren't. There's a New York Times article from 1990 which says, "The hereditary disorder has long stymied researchers because its symptoms differ so wildly from one patient to another."
So yes, I'd say it's quite possible to have cardiac issues and essentially not have aortic issues. (Naturally, you'll also want to ask the official medical folks about this.) My own mitral valve is not performing quite up to standards - it collapses a little with a "click", but doesn't allow regurgitation - and my aorta seems to be stable right now. In 2004-2006 I had annual ECGs, and nothing changed over the three exams - so they told me to come back every other year unless and until something DOES change.
This is the fun space where I live - do I have Marfan's or don't I? Nobody seems to be able to say for certain. So I just try to live sensibly, take care of myself, and lo que sera, sera.
Not to be a downer, but when your wolves said Neither we nor you have any control over when you will die, that's the utterly correct statement. IMO, to a lot of folks in wealthy countries death is a very remote prospect and it makes them act & think kinda weirdly. Because they've never seen someone die, death isn't real to them. :-, But IRL there's no bargaining, no forestalling, nothing to be done - when it's time, you're gone. Everybody's gonna die sooner or later; the World just has one suddenly-more-statistically-likely-than-normal way of maybe-pulling our plug, as it were. It sounds like that's becoming your reality too.
BTW, you use remarkably shamanic metaphors. Your wolves and my owls probably hang out. :-,
Reply
Hm, that's encouraging. IIRC from my last echo, I have a clicky valve and very slight regurgitation. Hopefully it isn't going to show any dilation from my previous ECG. I assume that if I'm confirmed as a Marfan's case then they'll refer me to a cardiologist as well, so s/he will be getting LOTS of questions. ;) I know there's a center here dedicated to congenital heart problem research, so possibly they'll have people familiar with Marfan's.
Because they've never seen someone die, death isn't real to them.
Wow, that experience would have taken me a lot to process. Did you later end up finding anything CPR-related that you could have done differently?
Your wolves and my owls probably hang out. :-,
As long as your owls aren't arachnophobic. :) I can't remember the link off the top of my head and I can't FTP into my site from this computer to look up the filename, but when I'm on the main PC later, I'll post a link to a picture of my feet; one is tattooed with a spider and the other with a wolf's head. Those have been "my creatures" for a long time; I've always identified with them and when I was pagan I considered them my totem animals. Otters joined the crew later too, although spiders and wolves have been my thing since I was a small child; otters didn't come onto the scene until I was about 20-21 years old.
Oh, and the advice for people with Marfan's not to get tattoos? That's another thing I'm just not giving up. If I have to take antibiotics to get a tattoo, fine, but I'm still getting ink.
Reply
A few.
If I have to take antibiotics to get a tattoo, fine, but I'm still getting ink.
If you're confirmed with Marfan's you'll need to lay in antibiotics for the dentist too. *hates it* We've already got enough trouble with drug-resistant biology - I can't imagine tossing tri-annual megadoses of amoxycillin through my system is going to help that problem.
Do you have posts that would share some of your spiritual autobiography with me? People who have peregrinated from one spiritual form to another interest me deeply, as that's something I have done.
Wolves and spiders? That's quite the deep-wisdom pair; honor be to you and your guides, past and/or present. My primaries are snowy owl and black panther, though I've had others occasionally come through as well.
Reply
If you're confirmed with Marfan's you'll need to lay in antibiotics for the dentist too.
I'd read some stuff that suggested that the risk of antibiotic reaction was higher than the risk of post-dental-visit endocarditis, so antibiotics shouldn't be automatically recommended before dental visits. But I suppose if they have an antibiotic that they're pretty sure a particular person won't react to, then they'd feel more comfortable about prescribing it.
Do you have posts that would share some of your spiritual autobiography with me? People who have peregrinated from one spiritual form to another interest me deeply, as that's something I have done.
I became an atheist prior to my introduction to LJ, so I don't have much; there's two posts I can think of where I touched upon my spirituality: menstrual musings and follow-up to the previous post. Then there was a recent post about a new spider tattoo I am considering and what the meaning of that particular spider would be to me. I was planning on writing a more extensive post about my connection to wolves and spiders in general but it hadn't made it out of my head and into my journal yet. :)
As far as my earlier life, my parents were raised strict Roman Catholic and as a result they chose to raise my sister and I without any religion. I became pagan sometime in my early teens (never identified with a particular type of pagan) and lost my paganism during the worst of my ten-year severe depression, because I could no longer believe in an omnipotent and benevolent force. I stayed "culturally pagan" for awhile, attending events and that kind of thing for the socializing. (I still miss doing pagan stuff.) At that point I returned to being atheist.
My sister, from about 2002 onwards, was moving in the direction of becoming a Christian. This was tolerable although accepting a lot of the viewpoints she started espousing were difficult for me (for example, homophobia, as she knows I am an out bisexual). In mid-2005 I found out that she'd finally gone off the deep end; she'd become a Young-Earth Creationist who believes every word of the Bible is literal. Even that I was willing to overlook because she's my sister, but when I found out she was using a wooden paddle on her children (one of whom wasn't even two years old at the time), that was the end of our relationship.
As a result of my confusion and upset over my sister, I started actually researching religion for the first time in my life, and this is what made me from being a "weak atheist" (kind of an atheist by default) into a "strong atheist" - now I'm an atheist as a choice, and I know exactly why I am an atheist and exactly what I do and do not believe. It's ironic that my sister becoming a whackjob fundamentalist propelled me in the exact opposite direction. :P And that's where I am now.
I would argue that I do have a sense of "spirituality" in a way - I believe deeply in the interconnectedness of all things, but it is based on a physical/quantum view rather than a soul-based view. We are all made of the same molecules, the same energy; there is no real difference, on a quantum level, between me and anything else in this world. We are all connected.
But I do not believe in the presence of anything which has not yet been proven to me; I need evidence in order to extend belief. As a result, I do not believe in souls or spirits as they are traditionally portrayed. I do not say they do _not_ exist, because I cannot prove their lack of presence; but until I have some evidence, I'm not going to expend mental energy on the concept.
Now I see my wolves and spiders (which, during my pagan years, I viewed as totem spirits) as still being my guides; the difference is that now I see them as tools my subconscious uses to communicate with me (for example, any time I have a dream with spiders in it, I know to pay attention), and as lessons I can consciously choose to incorporate into my life.
Reply
I'd read some stuff that suggested that the risk of antibiotic reaction was higher than the risk of post-dental-visit endocarditis, so antibiotics shouldn't be automatically recommended before dental visits. But I suppose if they have an antibiotic that they're pretty sure a particular person won't react to, then they'd feel more comfortable about prescribing it.
Things may be different where you are - or your dentist may practice in a different fashion - but in my experience, dentists literally won't come near your mouth if as a Marfan's you don't pre-medicate. It's very annoying.
Thank you for sharing your (hi)story. On one hand, I'm sorry your sister shares so little in common with either of our belief systems: she's made the Bible into an idol, which is a huge intellectual and spiritual error. At the same time, it's certainly been an opportunity for growth for you, so I guess there's something for which to be thankful.
For my part, the short version: Raised Roman Catholic. Opted out of confirmation as a conscientious objector (longer story). Wandered in college as I met lots of interesting people, but was always repelled by dogmatists of any stripe. Had my own pretty serious rounds of depression during and after college. Post-college, began to have VERY interesting experiences for which the scientific theories I found felt lacking (MUCH longer story).
Today I would be best described as an eclectic mystic: interested in many science and faith traditions, doing my best to find the best theories & answers regarding my experiences and those of the people whose company I keep. Those people tend to be curious, open-minded, Pagans/UUs/religious liberals/spiritual-not-religious folks. I'm a synthesist at heart: some theories & viewpoints have more truth and some less, and I'm just trying to sort out what seems most accurate to me. :-)
I'm personally of a theist bent, because those are the theories that best seem to fit my experience(s); I share your evidentiary orientation, but have merely arrived at a different conclusion for now. :-)
"Quantum spirituality" is a cool field in which to read. I've got a few books that I've enjoyed, and know of a few more whose covers I haven't cracked yet. Got any favorites?
Reply
Leave a comment