More Scenes from Summer Walks

a tiny nest, perhaps from a hummingbird!

a tiny truck cruising the streets

love the reflection!

can you spot the deer?

On Spoons

On that both wonderful and terrible timesuck that is Facebook, I saw this image posted by WEGO Health:

The best part was reading and agreeing with several of the people who commented. This infographic does explain the spoon theory somewhat, but I and many others seem to question how accurate it is for those of us with chronic illness. After all, you could consider the spoon theory to apply to all humans. Some humans just have a lot more spoons! In my opinion, this infographic and the person's day it represents could very well be that of a normal, healthy person! All of the tasks of daily living take something out of a person, and most people can only do so much in a given day. This looks like a pretty full day to me! For myself and many others with chronic illness, this day would not be possible, at least not with "borrowing" several spoons from the next days. The challenge of doling out spoons is that there is NEVER enough to do everything you want to do, and often not even enough to do what you need to do! It is always a matter of deciding between different items. Go shopping and cook dinner? More like one or the other! And assuming work is a full day, only four spoons seems unlikely, even for a relatively "easy" job.

Another point several commenters brought up is showering. They laughed at the idea that taking a shower would only count for one spoon. I agree! Showering can be one of the more depleting, exhausting acts for me. Unfortunately for those around me, this sometimes means I don't do it as often as I probably should! I choose to allocate my spoons elsewhere.

Where my spoons go is always a choice, and often a painful one. I don't always make the right choice, and I often regret my choices. Such is life a spoonie! If only spoons grew on trees...

Scenes from Recent Walks

During the summer (when I have more time) I try to take walks as frequently as possible. There are plenty of days when the heat and humidity make it unbearable, but there have been several days lately that haven't been too bad. Here are some images from recent walks I've taken:

wild turkeys!

turkey feather

The last two are from my instagram. I'm pretty active on it, so follow me @nelsonkl23 if you want to see more glimpses of my life! 

Magazine Monday: Dangerous Language

from the June 2014 issue of Good Housekeeping

I have a pretty big issue with this story from Good Housekeeping. Language is important, and it can be dangerous. I get it, it's a great headline - "How I dropped 165 pounds, beat multiple sclerosis and found love" - but is it truly accurate? Beating something in this context generally means fixing it completely, curing the disease, getting over it, moving forward without it. Did Tabitha do this? No!!

The supposed miracle solution Tabitha used was adopting a healthy lifestyle, including improving her diet and adding an exercise regimen. Great! I'm happy for her, and I think this should be a part of absolutely everybody's life, whether they have MS or not. But the dramatic improvements to how she felt after losing 165 pounds - and the fact that she wasn't currently experiencing any flareups - did not at all mean that she had beat the disease! It did not mean she was cured! In fact, at the very end of the article, she admits to "experiencing occasional aches and tingles." She still has MS, and who knows how the disease will progress!

I could go into a secondary rant about Tabitha's decision to completely stop any kind of MS drugs, and her statements suggesting that a healthy lifestyle is slowing the progression of the disease, but I will refrain. I don't judge or begrudge her personal decisions, and I'm happy for her success and happiness. How to manage the disease is a personal decision and I don't think there is one right answer for everybody.

If I were to go into a secondary rant, it wouldn't be about Tabitha and her decisions - it would be about the danger of this kind of story in a major publication, without some well-rounded perspective. I think this kind of article, with it's sounds-too-good-to-be-true copy is dangerous both for people with MS but also for the general public who don't have any experience with the disease. There are enough well-meaning but clueless people out there who constantly suggest to people with MS that they should try a low-fat diet or an emotional cleanse or some other kind of maybe-helpful-in-some-general-way-but-NOT-A-CURE piece of crap. I'd just like to see an article in a magazine like this that tells a more helpful story about the disease. It's a subtle thing, but the language chosen to tell a story is SO IMPORTANT!!! Okay, end rant.

An Interview with MS-Fundraising Marathoner Olivia!

I'm very excited to share with you today an interview with a very special person, my sister's BFF and a good friend of mine, Olivia. This past fall Olivia ran the Chicago Marathon and raised loads of money and support for MS. I am honored to be a part of her inspiration for running under the MS cause. I think there is something especially poignant about the marathon+MS connection, since it is such an extraordinary physical feat that many or most MS-ers are simply not capable of. I also know that many people with MS (myself included) who didn't particularly enjoy running pre-MS become incredibly jealous and long to be able to run. My neurologist once told me that for the brain there is a huge difference between walking and running. I know this to be true, since I currently walk without problem but on the occasions when I run a little burst here or there (chasing after a ball or something similar when playing with my niece, for example) I often experience a scary lurch-catch phenomenon where my brain/body is a few steps behind my intention. So in addition to everything else, I thank Olivia and others like her for letting us live vicariously through her. Now on to the interview! Thanks, Olivia (or ia, as I sometimes call you!) for being so very awesome and for your caring and support.

Oliva post-race!

Why did you want to run a marathon?

I have been running for a long time. When I was little, I would watch my dad get ready to go on a run after work. One day, I decided to join him and fell in love with the feeling I got from running. Ever since, running has been very important to me. Eventually, I made running my hobby and started to run races. Many runners dream of conquering a marathon, and I was definitely one of those runners. I knew that running a marathon would take dedication, determination, and much focus. One day, I was watching the Chicago Marathon and decided that 2013 would be the year I would run it!

Why did you decide to go the extra mile (haha) and run for MS?

Charities are a very important part of running the marathon, and the Chicago Marathon is a great way to raise money for all kinds of causes. I had never run a marathon before, but I knew I didn’t just want to run for myself. I was inspired by my friend, Kayla (La), who is battling MS. La’s sister, Traci, is my best friend. Hearing from Traci how strong La has been throughout her illness made me want to run for her, along with all those who suffer from MS.

One short month after signing up for the Chicago Marathon and pledging to Run for MS, I started my job as a social worker at Northwestern Hospital on the neurology unit where each day I work with patients who suffer from MS. My new job gave me, and continues to give me, an insight into how much MS affects the person, their family, and their friends.

Tell us about the experience of running the marathon, of putting you body to the test like that.

The marathon was, in a word, AWESOME. When I started training, I injured myself in the 4^th week. I had Achilles tendonitis and was told not to run until my physical therapist said I could. This was TERRIBLE news. I was worried that I wouldn’t be able to run the marathon at all. After going to therapy for about 8 weeks, I resumed running and trained for the remaining 4-6 weeks. Since I had such little training, I feared that I would get injured again, or worse, not be able to finish. Despite my fears, I completed the marathon and was beyond happy as I crossed the finish line.

Throughout the marathon, I ran without music. I did this because I wanted to hear all the cheering from the spectators along the route. I’m so glad I did that. I would hear “GO MS!” and “RUN FOR MS”! It was so uplifting and gave me the boost I needed many, many times throughout the race. After the race, I was tired and sore. I didn’t want to do anything but sleep. I felt lucky that I could even run at all, when so many people who suffer from MS are unable to even walk at all.

I call my blog The MS Muse, because I find the disease makes me see the world in a different way and inspires me in unique and interesting ways. How have your experiences with MS (and the experience of raising money and support for MS with the marathon) influenced the way you see the world?

As I have mentioned before, I didn’t take finishing the marathon for granted. My experiences with MS have shown me that many suffer from terrible pain which often prevents people from walking or even moving at all. Raising money for MS was not difficult because I was able to really speak from the heart how the donations would benefit MS research and overall support. Some people who donated chose to tell me their experiences with MS as well, and it served as even more fuel for my training. In general, both running and fundraising for MS, taught me that as running was painful and fundraising was stressful, I could overcome it with perseverance. My motivation and inspiration was reading about and seeing others with MS who persevere over their own pain, sadness and fear.

What are your plans for the future - do you want to run more marathons and do you plan to stay involved with the MS cause?

I caught the bug. I will be running more marathons for as long as I can run! In 2014, I plan to run a few half marathons and will run the Chicago Marathon again. I will definitely plan to stay involved in the cause for MS in the future, whether it is for the Chicago Marathon or any of the half marathons I will be running. 

The quipple-ized Olivia, and a metaphorical
message true for both running and living with MS.
from thedailyquipple.com

Dear Santa

I've been pretty quiet on this blog for quite some time, though I'm thinking about resolving to be more regular here in the new year. For now, I just wanted to share a sweet story. My amazing niece wrote a letter to Santa in school recently, and she concluded her letter by asking for some good medicine for me. Her sweet nature and caring concern truly melts my heart.

At the moment, my medicines are working well enough, so I'm imploring the jolly fellow to instead bring some good medicine to all those of you who haven't yet found a med that works well. And while I'm at it, how about a cure for us all? And some sort of treatment to repair damage and function, too? Thanks, Santa. I'll leave extra cookies and milk.

I wish you and yours a very Merry Christmas and I hope you are able to relax and enjoy some of those many little moments that make life sweet. Check back in the early new year for an interview with a friend who recently ran the Chicago marathon for MS and more of my MS-inspired musings.

Book Review: Notes From a Minor Key by Dawn Bailiff

A confession: I read this book more than a year ago, and I fully intended to review it for this blog soon thereafter. I know I had all kinds of specific thoughts I wanted to share, but my memory now offers only general impressions. The perfectionist part of my wants to reread the book just to write a better review, but I'm fighting the urge.

I was extremely interested in this memoir because it is about a professional musician with MS, and it wasn't disappointing in that it painted vivid pictures of both life as a musician and life as an MS patient that I could very much relate to. Here are some of my general impressions of Bailiff's memoir:

1. It is very well written, with some beautiful descriptive passages.
2. Bailiff had some incredible musical experiences with some incredible people.
3. I would have enjoyed this book much more if she had left out the parts about her supposed psychic abilities.
4. Bailiff discusses repression-as-cause-of-MS in a similar vein to Gabor Mate. She takes it further to equate the higher rates of MS in women to a socially inflicted female shame, calling MS a "malady of repression, of anger and frustration turned inward - maybe even of self-hatred." As I've discussed before, I find these theories quite troubling.
5. I dog-eared a page because it is a description of my worst symptom: "There is this creepy, itching sensation all over my body, but when I scratch, I realize that the itch is inside my skin, underneath it somehow, and I can't get to it." Bingo.