I’m getting braver! Here’s a recording of me actually performing the Bach-Gounod Ave Maria in Church for their Jubilee celebration, three nights ago. I got sick a few weeks ago and haven’t quite recovered yet, but now that this celebration is over I can maybe relax and sleep. For a year or so. Or at least until I feel human again. Crappy compromised immune system!
Anyway, this was a “Damn the MS and just do it” situation for me. I had made the commitment, so it didn’t matter how I felt, I just practiced and practiced and then performed, and I’m pretty proud of how it sounds. I wouldn’t want to be in this kind of situation very often, but I proved to myself that… just maybe, I’m more capable than I give myself credit for. Kinda cool!
And yes, it really is snowing at the end of April. It’s been snowing on and off for days. I’d rather have snow than flooding, but I *would* like to see the ground at some point. And, you know, summer and stuff.
Mike Tompkins is amazing – he started out as a beat-boxer and now he does multi-layer a cappella tracks like this – his amazing version of Adele’s “Rolling in the Deep.”
I sent this to my voice teacher, and she pointed out that not only does he sound amazing, but his pitch and tempo are absolutely perfect for each layer that he recorded.
So: my lesson here – don’t layer bad tracks hoping that, blended, no one will notice the errors. Don’t hurry them to just “get it out there” unless there’s a reason to do it. (When I first started blogging, I was told “sloppy success is better than perfect mediocrity” hahaha!) Don’t try to get everything recorded in a single session, your voice won’t like you much after 8 or 9 hours of singing. And most of all, work each layer until you like how it sounds by itself. THEN put everything together and publish it, because THEN you’ll be proud of what you’ve done!
Welcome to Musical Monday! I’ve decided to show a little of what’s possible with A Cappella singing, and why I think it’s an amazing and valid tool for anyone who is interested in developing their voice AND their brain.
First off, here’s an example of a crazy amazing song by a Grammy award winning A Cappella group called the “Swingle Singers.” Notice that even though (obviously) they are ALL amazing singers in their own right, the really important thing here is the vocal blending and harmonization, which makes the whole song a different experience than just a soloist standing up with a microphone. They’re not even using words (although there may be words in a language I don’t know at the very beginning and end?) and it brought tears to my eyes! It’s such a gorgeous arrangement.
I’ve found an article that explains really well exactly *WHY* A Cappella works as a learning tool – not only does it force you to really think about the melody and the music, but simply LISTENING to it will help develop your ear and help create more of those ever-important neural pathways. Since I have MS, I’m *VERY* interested in anything that helps build more pathways. I want to keep exercising my brain, and I’m hopeful that exercises like this, coming up with new ways of thinking about “normal” things like music (or art or ANYTHING creative) will help to replace some of the pathways that I’ve lost. I really feel like I need to pay more attention to lifelong learning than most other people, so it might as well be with something I honestly enjoy doing. THIS IS WHY HOBBIES ARE SO IMPORTANT!!! Creating anything new can actually change the physical landscape of your brain, especially if you make a HABIT of creating new things. Even just doodling a page a day can help.
Here’s an interesting article I ran across from Caltech a couple of years ago. Has anyone heard anything else about this research? Any updates?
Of Bugs & Brains: Caltech Researchers Discover that Gut Bacteria Affect Multiple Sclerosis
PASADENA, Calif.—Biologists at the California Institute of Technology (Caltech) have demonstrated a connection between multiple sclerosis (MS)—an autoimmune disorder that affects the brain and spinal cord-and gut bacteria.
The work—led by Sarkis K. Mazmanian, an assistant professor of biology at Caltech, and postdoctoral scholar Yun Kyung Lee—was published July 26 in the early online edition of the Proceedings of the National Academy of Sciences.
I’ve talked before about hobbies and singing in a post called Hobbies, Compromise and MS. I finally decided to upload a recording of me singing something! Not opera though. I’m not brave enough for that yet.
I’ve been playing with Audacity (BEST free music editor out there IMO) and came up with this – it’s all me singing, 14 different layers, and although I know there are a LOT of errors in timing and pitch, I’m still pretty proud of it!
So there it is, my proof that hobbies don’t need to end with a medical condition, or going on long term disability. Consider taking up a new hobby that suits your current skill-set, since you NEED to find something enjoyable in your life! Or work with something you’ve always been interested in but haven’t had time to experiment with. I finally have time to play with music and harmony! It’s a learning experience – from this I learned I REALLY REALLY need a metronome because I actually sang each part slightly slower than the last, and I did the lyrics last, so by the time I got to them the timing was incredibly WAY off. But I did my best, and I think it sounds pretty good.
Hobbies are really important for your peace of mind. I made the mistake of cutting myself off from my hobbies for a LONG time, and my confidence and self-concept really suffered as a result. Hobbies help keep you rounded as a person, the opposite of “putting all your eggs in one basket” as I had done with work. I needed to rediscover my hobbies just to feel human after my “basket” suddenly disappeared. It took a long time, but I’m starting to feel better, because my hobbies are things I can actually do! Singing is a reminder that I didn’t suddenly stop being a person, with skills and talents, after becoming unable to work.
I’m going to try and post something music-related every Monday. It may be a description of how to make a video like this, or another song, or a cool tutorial. I am also open to suggestions here, just comment below! Yay for Musical Mondays!
I especially love the first article about small changes leading to big improvement. It’s in the Winter 2013 Issue. I love the idea of baby steps, because they’re small, non-threatening steps you can actually take right now, and baby steps in sequence can still lead to something huge.
REMEMBER: You don’t have to figure out everything right now. You only need to know what you want to do NEXT!
A few posts ago I mentioned that I had joined Weight Watchers and it, along with the Wahls Protocol, was ensuring I got the nutrition I need in my diet. I’d been experimenting with diets and diet modification for years, talking to doctors and nurses and registered holistic nutritionists… and usually came out with more questions than answers. Questions like:
– If I’m eating right, why do I need all these supplements?
– If YOU AGREE I’m eating right, why are you recommending more supplements?
– What do I ACTUALLY need to take, and in what dosage?
– What do I need to eat, and in what amounts, to get the nutrition I need to cut back or eliminate the supplements?
I discovered that if someone is making a living (or part of their living) selling supplements, they will always have a supplement to recommend, no matter what you’re already taking. I also discovered that medical opinions on supplements for MS vary widely. Everyone agrees that I should be taking Vitamin D, but I’ve been told anywhere from 2000 to 5000 IU’s a day, and somewhere I even read up to 8000 or 10000 IU’s. At one point, I was taking something like 14 pills at once, with all the different supplements.
I hate taking pills. I’ve mentioned that before. That was what inspired me to start looking for food-as-medicine type information. There’s nothing extra for these people to sell, no supplements or whatever, although they may push the occasional book. That’s okay, I’m fine with buying a book or two. It’s certainly cheaper than 14 supplements a month.
I was chatting with a Registered Holistic Nutritionist, who mentioned her Mom had been diagnosed with MS, and she’d found this amazing Ted Talk from a woman who had used diet modification to control her symptoms. This woman was Dr. Terry Wahls, and she went from a tilt-recline wheelchair and secondary-progressive MS to horseback and remission in something like a year, purely through diet.
Here was something I could get behind. I was totally willing to change my diet and my eating habits, because I believed from the beginning that the answer to most of my problems was in what I was eating. I just didn’t know what to change. So I toyed with the Wahls diet. I bought her book, “Minding My Mitochondria,” and read it. Not cover to cover, since some of it was a little too scientific for me, but enough to see what she was talking about. And I slowly started eating less processed foods. And more vegetables. And less grains. Then I took the plunge and went gluten-free, which is one of the most painful things I’ve ever done – my Mom’s Italian, Dad’s Dutch, and we survived on pasta and bread. But suddenly, one day it just stopped being so awful. My biggest discovery is that I can’t use substitutes. Gluten free bread is inedible, so I just don’t eat bread anymore. Cookies and muffins, sure, because they’re supposed to be dense and heavy. I can’t do substitutions because I have a very firm opinion on what food SHOULD taste like, and what the texture should be. So I just cut most grains out altogether, and I don’t even miss them. I’m reintroducing some into my diet, on advice from a Registered Dietitian, but it’s quinoa, rice and oats, mostly, and for now only once a week. I really try to eat more nutrient-dense foods, and starches just don’t have as many nutrients.
I also toyed with Dr. John McDougall’s diet, and I tried a Paleo diet, but if something doesn’t make sense to me, or (more importantly) doesn’t FEEL right to me, I won’t embrace it wholeheartedly. No one source of information, or one type of diet, ever felt completely right to me. Until I joined Weight Watchers.
I know, I know, I sound like a recruitment poster or something. But seriously, the new system doesn’t contradict any of the dietary recommendations that I decided to follow over the last few years, and it actually makes it a lot of things easier for me. I use their system to keep track of all the fruits and veggies and animal proteins and other good things I’m SUPPOSED to be eating, and it’s actually LESS restrictive than what I’ve been doing by myself for the last while. I’m eating a lot more now, and a wider variety of food, than I was allowing myself before I had these guidelines.
This is what I’ve done to combine the Weight Watcher tracking with what I got out of Dr. Wahls’ book, and I ran it by a Registered Dietician to make sure that my new planned diet was healthy and safe – she gave me two thumbs up!
– I aim for 9 cups of water. This may sound like a lot, but I make a lot of smoothies and soups, and I count the water I use in those as well. Plus, since starting Modafinil, the persistent dry-mouth makes me WANT even more water!
– I aim for 5 to 9 servings of fruits and vegetables a day, which is easy if you like making soups and smoothies. I assume 100 grams is a serving, and I label each serving check-box with a colour: red, orange, yellow, 4 greens, blue, and white. White is NOT starch, it’s the sulfurous veggies like cauliflower and mushrooms and onions. According to Dr. Wahls, keeping track of colours helps to ensure you get a good balance of all the different micro-nutrients you need, maybe not every day, but over the course of the week.
– I aim for two servings of healthy oil; one could be a teaspoon of olive oil or 1/8 avocado.
– I aim for 6 ounces of protein in a day, at least half of which will be animal protein. (If it had a face, it’s animal protein.)
– I aim for three servings of dairy – I react funny to cow milk and cream, so I stick to yogurt and cheese, and I use a LOT of almond milk, which also counts as dairy. Not sure why, but I’ll take it!
– I aim for at least one serving of fish a week, and one serving of a non-gluten grain. I’ll increase those as I learn to cook more with them.
– Last but not least, I aim for 2000 IU’s of Vitamin D, a Calcium-Magnesium supplement, and a multivitamin. That’s it.
THIS HAS MADE MY LIFE SO MUCH EASIER! I just have a little list with check boxes, and I try to check my list off every day. No more fretting about what I can and can’t eat. No more going hungry because I can’t figure out what I should eat, or going crazy and eating EVERYTHING IN THE PANTRY. And believe me, with a fruit and veggie heavy diet, I have more problems eating ENOUGH points worth of food than I do going over my daily allowance. Also, Weight Watchers encourages writing down every little bit of food you put in your mouth, and I’ve expanded that to include EVERYTHING, meds and supplements too, and since I’m writing all that down it’s easy to keep track of energy levels and hunger levels as well.
So there’s my take on food, nutrition and diet. Just remember, what works for me may not work for you, and it took a few years of trial and error to come up with a way of eating that’s healthy and comfortable for me. I hope this inspires you to find a healthy and comfortable way for you – it’s completely worth whatever time you spend on it, in the end!
Three little pills, spaced over three days. I’m super jittery but I feel AWAKE! Alive for the first time in forever. Looking forward to testing my limits all over again!
And a little afraid of the crash. But only a little.
Yesterday I didn’t have my normal morning coffee, because I hoped Modafinil would do enough to keep me awake. What I FORGOT was that there’s no actual caffeine in Modafinil – it works on a totally different part of the brain. So by about 2pm I had the (by-now-familiar) withdrawal headache. I have a love-hate relationship with caffeine – we break up occasionally, but I always go back. Anyway, I don’t like drinking coffee after noon or so, because it can interfere with my sleep, so I just waited it out. I kept telling myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.”
So I just went about my day, doing housework and stuff (MUCH more housework, and more quickly than usual, by the way!) and it was fine, my energy levels were still pretty good, even with the low-grade headache. Right up until about 7pm when the Modafinil, rather abruptly, stopped working. Left my system. Done.
I was at a Weight Watchers meeting. (I’ve discovered that the new system is PERFECT for me, in combination with the Wahls Protocol, to help me make sure I’m getting the nutrients I need.) Anyway, I got hit suddenly with a dizzy spell hard enough to stagger me. I was standing in front of a table, and I’m really glad the table was there, because I’m pretty sure I would have hit the floor otherwise. One of the ladies asked if I was alright, and I said “It’s fine, my new alertness drug just wore off.” But inside my head I was frantic: “How the hell am I gonna get home? I can’t drive like this!” Thankfully, I quickly realized two things: 1. I moved back home so I had LOTS of people I could call if I really needed help, and 2. the dizziness was already wearing off, even if the brain fog wasn’t.
And I honestly think the brain fog wasn’t that bad, it was just that the CONTRAST between the alertness I had felt and then the exhaustion when it wore off was so sudden and pronounced. I had just moved from what felt like my “old, pre-MS normal” to my “MS normal.”
And it scared me. And then I started to over-think the situation (as usual) and freaked myself out even more.
Modafinil isn’t a physically addictive drug. That means my body apparently won’t develop a tolerance, so once my Doctor and I find a working dosage, I won’t have to increase it over time to keep the same effect.
But psychologically? Whoa Momma! I’m incredibly grateful right now that I don’t have an addictive personality. The only addiction I’ve ever dealt with is caffeine, and I’ve weaned myself off it several times, just to make sure I still could. Heh. Another control issue?
But Modafinil? The thought of feeling normal, and all I have to do is take this little pill? One teeny tiny pill, to make such a difference…
That terrifies me. Because I want it so very, very badly.
But that means giving control to this little white pill, doesn’t it? And I know I’m going to do it anyway. The thought is accompanied by both exhilaration and fear.
So yesterday, as I said, I told myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.” And it was! I actually sat and REVELLED in the coffee, quietly of course. Too early for loud revelling, and besides I hadn’t had my Modafinil yet, so I wasn’t feeling particularly bouncy.
But I was waiting for it, looking forward to it. Craving the thought of feeling normal, if only for half a day. And I understand now, in a way I never have before, how insidious addiction could be. How somebody (with fewer control issues maybe?) could be completely overtaken, suffocated by it. But welcome it anyway.
Holy crap that scared me.
And then I realized that, once again, I was over-thinking. Maybe, just maybe, I should look at Modafinil differently. I mean, if I learned that a friend was on antidepressants, I’d applaud them for reaching out and talking to someone, and taking control of their situation. Too many people, I think, still assume that therapy exists for the weak. I think it exists for those strong enough to talk to someone about their lives, people who are proactive and want to change things about their thoughts and situations. (Ahem. I finally made contact with a therapist, to discuss my control issues and learn to deal with “my new normal.” I’m now on a waiting list. But I’m still happy I finally reached out to someone about it!)
Anyway, maybe I should think about Modafinil the way I think about antidepressants: it’s a way to help regain control, not a way to give control away to a drug. So I asked myself a few questions:
Q: Is it a necessary drug for me to take? Will my condition get worse without it?
A: Well, no. Most likely not. There have been some studies indicating that Modafinil may slow MS progression, but not enough to make it “a necessary drug.”
Q: Will my experience of life be enhanced by this drug? Will it help me participate more fully in my own life?
A: Yes, I believe it will.
Those simple questions, that stated belief, has leached away most of my fear regarding any loss of control. In any case, it’s only day three, and I may have a lot more to learn about this lol!
So my lesson for today is this:
BE AWARE OF THE CHOICES YOU MAKE, AND WHY YOU MAKE THEM.
That’s it, that’s all. There are always consequences, so when you’re making what you feel is a major decision, think about it. Be aware enough that you can feel good about what you decide. Write down your reasons, because it’ll help to remind you later WHY it was a good decision for you at the time. Is the end result worth what you feel you’ll have to give up? If your answer is yes, then just do it!