Sunday, July 25, 2010


Today I spotted a bug fluttering on the water, ripples frantically escaping from its body. I immediately ran to the other side of the pool, careful not to trip over anything. I picked up the pool skimmer by the end of its long rod, leaned over my pool and scooped the little guy out. I had a good look at him up close. Some kind of ant with wings. I was relieved that it was alive. Why?

As far as I know, bugs can't feel pain. I don't even know if bugs really think. I just couldn't watch it struggle like that, so helpless and distressed. For years it has bothered me when people kill bugs for no reason besides fear or disgust. I think it's more the fear that bothers me. It's wrong to be so afraid of something that won't hurt you if you leave it alone. I'll definitely swat flies, moths, ants or wasps if they're in my house and I won't be able to get them outside because they're a major nuisance, might bite me in my sleep or eat crumbs and bring stuff back to a colony. And spiders! Don't get me started on spiders. They're so beautiful and fascinating.

I realize that most people are afraid of things for a reason. We play hypothetical scenarios in our head. We all take certain actions that make us feel secure like staying away from the railing or killing the wasp. I think it's fine to be afraid to a point, but how about fears whose intensity is unwarranted?

I'm thinking of myself right now. Because of my lifelong balance and co-ordination issues, I dislike any situation where I feel disconnected from the ground, like I refuse to learn to ride a bicycle and I don't like to be carried unless I can easily put my feet to the ground. I hate being upside down. You can see here that a feeling of self-control is essential to me. Of course we learn to control ourselves on roller blades and that kind of thing, but I don't want to. I feel unsteady and fatigued enough just having my feet on the ground. Standing or walking for long periods often makes me wobbly or I start tipping over.

Growing up I wasn't usually conscious of my waddling gait. I took ballet for eight years but I didn't love it and it just wasn't my cup of tea (also, I never practiced), Also, I just didn't have the balance and co-ordination to do the movements and postures gracefully. But I could absolutely do them. Without assistance. That's all I cared about. I just focused on doing the best that I could. That was good enough for me. My teacher helped me a lot and even modified my part of at least one recital dance so that I could do it.

Independence is still very important to me and I want to feel more secure. Over a year ago now, my balance and fatigue issues worsened. Once we ruled out a change in my brain, my internist and neurosurgeon hypothesized that my illness, or any weakened state in general, had caused my change in symptoms. No one could explain why these symptoms, which I've had for my whole life, are were now inconsistent: sometimes I'm very steady, strong and energetic, and other times my legs feel unsteady and weak. Through paying attention to my body I recently realized that endurance is my main issue. After a period of rest, most activities are very comfortable.

After standing or walking for more than between ten minutes or an hour, I start tipping. It's often not even visible to other people, but inside I'm working hard to keep my feet on the ground, devising stances to try to make myself steadier and to prepare myself in case I need to catch myself from a fall -- I often find myself averting this crisis.

Also, I feel myself waddle after walking for a while. I start off walking fast with my back straight. Then after ten minutes, I feel myself start to waddle like a duck. It's mild now and has been for years. A lot of people probably don't even notice it. Once the balance issues set in, I often walk in a minor zig-zag kind of path. If I'm walking with someone, I'll notice myself walking into them. I might tip over. My legs will fatigue -- sometimes to the point that feel like I'm carrying weights on my legs.

These are all reasons why I will get physical therapy. I've had the prescription for months, but put if off because I've felt weak or had asthma flare-up. There's also the procrastination. I'm nervous to ask for help. What if the physiotherapist doesn't agree that I need help? I mean, surely if my symptoms were significant they would be visible to people.

I'm feeling more secure in my decision to get PT: I have a cerebellum malformation; my internist and neurosurgeon both agreed that physiotherapy should help me; I feel like garbage regularly; symptoms that are intermittent and invisible can be just as significant as those that are constant; physical therapy may help me cope with these problems.

I recently found out about folding walking canes. These are for people (like me) who don't have good endurance, people whose symptoms show up after a period of activity. So you can have the cane folded and in your bag when you feel fine, but when you start to have problems, you can just whip it out and use it. This is great for me, as I have considered a cane before, but didn't want to get stuck using it if I didn't feel I need to. There are plenty of times when I can endure activity for hours without serious symptoms, but I usually can't predict how much activity I will be able to endure.

I've told several people about my feeling that I could benefit from a cane, mostly telling them about the insecurity I have about it: much of the time, my symptoms are invisible. I can dance and run during good periods, especially if I've only recently been on my feet, so what if people think I'm just using a cane for attention? Or what if the opposite happens? I don't want people to worry about me or worse: treat me like I'm delicate or that I can't or shouldn't do certain things. But everyone I've talked to has said who cares what anyone thinks; I know my own body and I should do what feels right. Such great friends I have!

Perhaps my PT will understand me. I had a session with this PT seven years ago for my neck. He's very nice and thorough. I've just been insecure about what other people think since my neurologist said if I go in to see a physical therapist, he will say "Why are you here?" implying that my issues are insignificant. I don't blame the neurologist. His examinations showed nothing and he didn't know much about my condition at all. He didn't understand the whole endurance problem -- hell, I didn't either!


  1. By all means, do what is best for you, regardless of what others may think!


  2. Very insightful of you to start with the struggling but. I rescue drowning bugs too.
    You should to for yourself whatever helps you.

  3. If anyone was to say something about you wanting attention for having a cane.. tell them that you're fashion-forward and are starting a new trend! I think the folding cane is cool, you told me about it the other day and I can't remember if I was fully present while chatting so I don't know if I actually commented on it or not!

    I feel for you about the balance. Like... I walk into my friends all the time cause I tend to drift one way or another, and I get laughed at sometimes when I tip over and right myself (good natured, I find it amusing too after the freak out about possibly falling over for no reason is gone).. and like I'm sure I've told you before how I can't shave in the actual shower with water cause I can't balance especially without my glasses on.

    I've also got the same fear - I do not like it when my feet aren't in control. Skates, skiies, bikes, being picked up... all things that massively upset me cause it's terrifying. I even freak out if someone pushes me on a swing.

    So I can't imagine having that even worse PLUS having probs with endurance... a cane would be amazing. Especially for dizzy spells... would be much easier than having to grab onto a wall or just sitting down in the middle of no where.

    PS I'll be seeing you in three sleeps!

  4. Ashley, when I visit you... and every time I visit... I realize just how much self-awareness you have. That is so important in life, and it's important to how we navigate through our own daily living. It's awesome that you are writing these observations about yourself. Sometimes, when we don't do that, we don't realize small things about ourselves that really do make a difference.

    Your life will be dramatically easier, despite your health challenges, just because you are alert to your body. Thumbs up!


  5. I'm with you on the bugs -- I'm notorious for taking the catch-and-release approach. And the folding cane sounds brilliant. I hope that works well for you.

  6. Hey do what's best for you. Excellent post, love the stuff you wrote about killing bugs. As I grew older, I think I gained more respect for them, I just push them aside. I think I have to teach my little guy to do the same, lol, he steps on everything, probably learned from daddy, lol. Hope you are feeling better today. It cannot be easy to live with so many problems, and on the end all we have to do is just cope with time, move on and stay on the positive side. Anna :)

  7. Jane - Thanks for your support! I should be more invested in what I think rather than what other people think.

    Joe - Thanks! I actually didn't mean to go into the cane stuff when I started with the bug. It just sort of happened! Yes, I should take whatever measures necessary to help myself! I am just cheating myself otherwise and giving into fear.

    Lindsey - Yes! Great idea! Canes can be fashion forward for sure. They can also be so theatrical and character building. You have great points about a cane offering freedom and security that I don't totally have when I'm symptomatic while active. Thanks!

    Nevine - Thanks for noticing my self-awareness! For years I thought everyone was as introspective as I was, but as I get older I see that's not the case. It definitely helps me understand why I feel and think certain things and behave in certain ways. Then I can figure out what to do about them. Otherwise, I think I wouldn't be able to be as happy as I am because things about myself that I didn't understand would be bottled up, unaddressed, just left to grow. If I didn't think about these things, I wouldn't be able to share what I'm going through with others and get their help.

    Penelope - Welcome! Catch and release is most humane but requires a lot of patience! The folding cane does sound brilliant, doesn't it? Thanks!

    Anna - Thanks for the compliment! Yes, I must do what is best and not let issues like stigma deter me. I felt great today! I definitely wouldn't have needed a cane! Yes, it isn't easy to deal with my problems, but you're right: positivity really helps.

  8. Wow Ashley... I am struck by your continued "can do" attitude throughout all this. It's so very hard when medicine can't "name" what is wrong and yet it so impacts your life in this way. So many things are a conglomeration of symptoms and don't have one specific cause. Blessings to you as you continue to navigate your health issues with such bravery.

  9. Jayne - I always feel like my challenges have made me strong. This particular year has merely been a continuation of that. It's so true that medical issues are so complicated. I've been out of investigation mode for weeks now. I'm thinking more: whatever happens, happens; I'll just listen to my body and do what feels necessary be it running or resting! Thanks for being so nice and observant!