After school Nefarious and I prepped six petri dishes — two each — with nutrient agar and then when it had set we all seeded one with bacteria from our mouths, and the other with bacteria from our armpits. Over the next week we will see what horrible things develop. It’s funny, when I bought the science supplies online, many of the stores selling such thing were paradoxically filled with Christian gear… I suppose that’s a reflection on who does homeschooling in the USA.

You may have already seen it on Caitlin’s blog, but I wanted to share the awesome Valentine’s present that she made me alongside other neat stuff she’s made recently — it’s an 8-bit picture of me! I love it. We’ve got it up as a wall hanging right now (8 bit quilts are the coolest).

Today I spent the morning at the hospital, and I’ll be doing the same tomorrow. It was a difficult day because I haven’t been feeling well — I think in part because every time a step is taken to control the pain and I feel a little better that I get more active, damage my musculature in the process, and then spend a week or two feeling awful as my body struggles to repair the damage — and I hate having to talk about it all in detail when it’s so unpleasant. Definitely some positive things though — I have a referral process for a doctor who’s supposed to be the city’s muscle myopathy wizard which will be very nice if it pans out, and I finally got my permanent “handicapped” parking permit and am now a government-confirmed cripple I guess. This will be nice both because my legs need it, and selfishly because of the convenience in ease of finding a parking spot it offers.

I’m still waiting to get into some sort of qualified physical therapy program though, which is something I really need, because I hate being stuck on this tightrope of choosing muscle atrophy from lack of exercise, or two much exercise destroying the muscle in a way it can’t heal from. In the short term I’ve been considering dropping my weight significantly simply so my legs don’t have as much mass to move (I’m reading The 4-Hour Body right now which has got me thinking on the subject).

Other than that, not much, as you may have guessed from my lack of blogging. I haven’t been able to stand for long — which stops me, for example, from painting — and am ashamed to say that I’ve spent much of the time just resting. I have things I want to work on, but it’s been my experience that if I try and paint or create, the quality of my work suffers greatly because I end up channeling the way I’m feeling into it — and a sort of tired out apathy is not the most profound thing to steep artwork in… Tomorrow after school we’re heading to Sculpture Supply Canada to pick up an order I made a while ago and maybe tempt myself with other goodies. I’m out of silicone and have quite a few things that need casting.

Nefarious and I picked up some square doweling that’s perfect for making doll furniture. I made a chair, and she made a really nice matching table. In addition to making the clothing that the doll in the picture is wearing, she also sewed a really awesome handbag (building on the stitching they teach in Casa — Montessori kindergarten — I imagine). I do like that Caitlin and I are building such an effective DIY-ethic foundation for Nefarious. Because both her parents (her mother having MS) have serious health problems, I worry that she’s going to have to face some very difficult times at a younger age than is fair, so I really want to make sure she has the tools to stand on her feet through anything.

On that medical unpleasantness, I’d asked the doctors about having her genetically tested to see if she has the same disease as me (it is usually, although not always, hereditary), but I’ve been told that is strongly recommended against (a la Huntington’s). Because it’s a condition with no real treatment and no cure, the medical ethics stance is that it doesn’t do a child any good to have that spectre hanging over them, and they also feel that it’s a decision that each patient has to make for themselves (and that only an adult can understand the consequences of the testing). But every single time we go for a walk and Nefarious complains that her legs her, a little tremor of dread shudders through me. I understand why they don’t test children, but it sure would lighten my load to know conclusively that I have not passed this on.

Anyway… I’m enjoying the new season of Survivor, as I have every one since the first, but I’m not enjoying blogging and feel like I’m just going through the motions… I know it’s not very compelling stuff here. This weekend Nefarious is going to visit her grandmother, so maybe Caitlin and I will find some exciting last minute excitement. Just go to the airport and pick somewhere? Tomorrow my pain medication increases, so fingers crossed that lifts me out of this slump.


  1. Kimmo wrote:

    This is just a stupid drunken fanboy comment so sorry…

    Hang on, you have had so much influence on me. I mean on choices, I have a garden for food in the summertime and I have chosen the path on being self employed. Being free beats having money. Plus I try to do artsy shit on freetime, mainly music.

    And on children: although I have had a vasectomy since I dont want any children. I think they should know if they have any genetic problems. I will lose my hearing in the future. I know that. My father has the same problem.

    If you have a proper upringing you can handel it. I know it. Ive been around deaf people since childhood. I live for the sound to the point I lose it.

    I wish I could have beard as long as you have. But I have to wear protective gear since I have chosen hazardous profession so I have to trim my beard. Maby one day..

    Thursday, February 17, 2011 at 6:14 pm | Permalink
  2. Shannon wrote:

    Thanks! I wish I had musical talent by the way. It’s the one skill I’ve never had much luck developing.

    I am always terrified of wrapping my beard in a power tool (and did that a few times to my hair before I made a habit of tying it back while working). I don’t regularly use much more powerful than a hand drill or a dremel, but still… it would not be fun.

    Thursday, February 17, 2011 at 8:44 pm | Permalink
  3. Jilary wrote:

    Genetic testing with children is such a tricky question. My dad was diagnosed with a potentially life threatening genetic condition 2 years ago. It was recommmended that his female offspring get tested since it’s a bleeding condition. I immediately wanted to get tested, and felt that my brother should be too since he has other risk factors. My brother and my sister had different ideas and didn’t want to get tested at all.
    Another issue to think about is how you will feel if you discover you did pass on that gene (or discover Rachel passed on the gene for MS). It’s certainly complecated. For every positive step made in genetics, equally negative effects occur.

    Thursday, February 17, 2011 at 8:51 pm | Permalink
  4. JonnyButts wrote:

    I am grateful that you still go thru the motions of blogging even when you aren’t feeling it. I have become accustomed to reading the many thoughts you have over the years and am glad every time I open up my reader and see a 1 beside Zentastic.

    Friday, February 18, 2011 at 10:57 am | Permalink
  5. rachelmari wrote:

    Hey Shannon this is probably not the place to show this to you, but still I think you’ll enjoy this –

    Sunday, February 20, 2011 at 1:31 pm | Permalink
  6. Karika wrote:

    Re… but I’m not enjoying blogging and feel like I’m just going through the motions… I know it’s not very compelling stuff here….
    I think your blog is valued both for you and for your comments. Perhaps you would find a new validity in it if you more “scientifically” documented your disease, your path and your thoughts. This would give other sufferers an anchor. Also, since your condition is so rare, it will help gain further understanding. You are able to write in a very compelling way.

    Tuesday, February 22, 2011 at 7:58 am | Permalink
  7. Mick wrote:

    That quilt is awesome!

    Friday, February 25, 2011 at 6:12 am | Permalink
Wow Shannon, that's really annoying! What is it, 1997 on Geocities? Retroweb is NOT cool!

Post a Comment

Your email is never published nor shared. Required fields are marked *