Sunday, December 22, 2013

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.

Saturday, December 7, 2013

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.

Sunday, October 13, 2013

Cheering on Team O!

My friend Olivia is at this very moment running the Chicago Marathon. As you can see, she is running to STOP MS:

I am honored to be part of the story behind how Olivia came to dedicate her first marathon to this cause. From her blog:
After thinking hard about taking on this new challenge, I decided that I didn’t want to run the marathon just for myself. I wanted to run for a greater purpose. My friend, T, and her family have always been near to my heart. As T and I grew closer throughout college, she shared with me that her sister, K, was recently diagnosed with MS. Her sister, like T, was a fantastic musician and a bright and vibrant presence to all around her. Despite the new change in her life, K, didn’t let it stop her from chasing her goals. K grew knowledgeable about how her mind and body worked instead of giving up.
Her persistence inspired T and her friends (me included, of course!) to participate in the annual MS Walk that is held in Chicago every May. The walk was fun – the walk along the lake was beautiful and we had many laughs among our group – but it also felt good to know that we were doing this for K along with many others who struggle with MS every day. 
K is just one example of those who have influenced my decision to Run for MS. A member of my family was also diagnosed with MS in his 20s but passed away after fighting the disease for about 50 years. All involved in his physical care and emotional support were deeply affected. This year I started working on the neurology unit at Northwestern Memorial Hospital. Each day I meet patients who are diagnosed with MS for the first time or are experienced with the ups and downs, the flares and the remissions. I feel so honored to be assisting them in their care. I try to make their day brighter amid the pain and confusion they and their families are experiencing.
Therefore, it was easy for me to choose to such a worthy cause. I didn’t hesitate to join the KarmaStriders and commit to raising $1,500 throughout the 3 months leading up to my training. I Run for those who can’t, I Run for the weak of body but strong of mind, I Run for MS.
Olivia raised over $1,600 for MS, blowing beyond her goal. And she is currently demolishing mile after mile in the race! I feel like I share in every stride - she is running for US, including those of us who could never take on such a challenge because of the disease - and I am loving the empowered feeling! She is showing how extraordinary the human body is and can be, a welcome counterpart to the other side of what the human body can be that MS teaches. Go O!!!!!!!!!!!!!!!!!!!

I will be interviewing Olivia soon about the race experience, so you can look forward to that.

Thursday, September 12, 2013

Guest Post From My Friend Gwen

Gwen + Kayla at our
2005 college graduation

Note from Kayla: I'm delighted to have another guest post today, this time by my college roomie and dear friend Gwen. I am very aware that my disease affects not just me, but all of the important people in my life. Guest posts from these people offer a look at the disease and its effects from the outside. Here's Gwen:

(Author’s note: I’ve been working on this post for over a year—fitfully, not steadily. Rough though it still is, especially the organization, it’s time to pull the trigger.)

“Everything happens for a reason.” I’m guessing Kayla has been told this at least once regarding her MS. I’m not sure what her reaction was, but I know mine would have been one of frustration, if not outright hostility. There was a reason Kayla’s MS happened, of course. As for happening for a reason, I wish I could believe it, but I don’t. There may be a few silver linings to the cloud of MS—like every other cloud if you look hard enough—but I know that if I or anyone else who loves Kayla could disperse that cloud, we would do it in a heartbeat. If any readers out there are employers of the “for a reason” phrase, I hope you will consider retiring it from your conversational repertoire.

To my own faults. I have noticed a certain selfishness in myself when it comes to Kayla’s disease. It’s something I try to counteract, but I’m not always successful. For instance, here is a sentence from a previous version of this post:
I hate all the pain and problems the disease has caused for my friend, but I don’t think there’s any way around this fact: the effects I have felt the most have been on our friendship.
Is this true? Yes. I don’t experience Kayla’s pain, and I often don’t know what specific problems she is going through because unfortunately we haven’t had much time together or corresponded as much as we would like in the past few years. So the way the disease affects me the most is through stolen time and energy for each other. But why would I choose to write this in my one guest blog post when I could write so many other things? Also, the way I put it seems a bit cold-hearted. It’s okay that I feel what I feel, but I need to keep trying to empathize with whatever Kayla is dealing with, to put that empathy above the comparatively minor effects on my own life.

At the same time, I know Kayla hates to be defined by her disease, something I wouldn't like either. At the risk of sounding “poor me” again, it’s hard to find a balance between treating her like any other person in my life and making concessions for the MS. For instance, Kayla sometimes isolates herself from her friends. How much should I push her not to shut me out? I have no way of knowing if she’s being uncommunicative because she’s going through some bad side effects from a medication or something similar, or if it’s because that’s just how she is sometimes. Even if she didn't have MS, it wouldn't be right for me to be too forceful with these things, but the point is that yet another side effect of a chronic disease like this is that friends and family members fear to overstep boundaries and limits, or misinterpret the actions of the person with the disease. “Normal” is a slippery concept to begin with, but there’s just no way to have something like normal in many aspects of my relationship with Kayla.

This post has been a bit of a downer, so I’ll close with an item that’s random but keeps coming to mind when I think of Kayla. I have seldom seen Kayla’s love and devotion to music, books, and especially her family matched in anyone. She is a person who cares deeply. I feel lucky to have her as a friend.

Saturday, July 13, 2013

A Few Things

1. Today I'm headed to Brazil for 2 weeks! I'll be teaching at a music festival, and it should be an awesome experience. I'm excited and apprehensive, mostly because I know I will need to pace myself and not overdo it but I have trouble doing this sometimes.

2. At some point after I'm back, I will be interviewing my friend Olivia (my sister Traci's BFF) about her plans to run the Chicago Marathon this October for MS.

3. I was recently contacted by someone about participating in an online message board for a research study. She writes that this study would "track exactly the kind of experiences that MS patients are having with the various medications that are currently on the market, and it's a great way for you to have direct influence over the various treatments that are going to be coming out in the future!" You can also read her original message in a comment on this post. She has encouraged me to share her info with anyone who might be interested in participating. Here it is:

Elizabeth Staples

Monday, June 24, 2013

Magazine Monday: Vitamin D and Iran

Interesting article in Smithsonian Magazine about the Vitamin D & MS connection in relation to some interesting statistics. During the time after the Iranian Revolution in 1979 - when the mandate for modest dress and head coverings was instated - the rates of MS in Iran skyrocketed. The rates of MS increased by almost 7-fold over a 16-year period, and tripled during the just 4-year period of 2005-2009! Better diagnoses is likely explanation for part of this jump, but certainly can't be enough to fully explain this huge increase. In the article, one Iranian research speculates that an Iranian genetic tendency for MS is exacerbated by the severe lack of vitamin D caused by the clothing mandate.

The full article can be read online here.

Monday, June 10, 2013

Magazine Monday: admirable motivation

I featured Ann Romney from last year's Fierce List from More Magazine. This year, I'm featuring another fierce lady from this list: Misty May-Treanor. The beach volleyball superstar has a pretty cool motto. Play for all those who can't, the sick, the disabled.

As I've talked about a few times on this blog, my experience with losing the ability to walk and otherwise use my legs appropriately, had a big impact on me. I think the human body and what it can do when it is functioning properly is pretty darn amazing. As in, miraculous and very much worth celebrating. I try to keep this mindset present as much as possible, now that my legs do basically work. And I've been trying to use this as a motivation for using them - for walking, for working out, for pushing myself. I am planning to crystallize these thoughts into something more concrete, but I love the idea of exercise and physical mastery over tasks like sports and endurance challenges being done because they can be done. Running a race because you can run, and so forth. This is the spirit of May-Treanor's motto and I really admire and appreciate it. Thoughts?

Tuesday, May 7, 2013

Guest Post: My Wonderful Sistar!

[Note from Kayla: I've long been bugging my sister and other important folks in my life to write guest posts for this here blog. My amazing sister Traci is the 2nd person to take me up on this, after my mom. As I expected, she gave me an incredibly well-written essay, touching and funny and illuminating. Much love and thanks to T! She is the same T, by the way, behind the art of The Daily Quipple.]

I was up all night worrying about MS research not moving fast enough in the positive ways that we all pray that it will. I actually slept zero hours and zero minutes last night*, because I was worrying about ALL of the things. I think it's because I basically read the entire MS Society Blog just before going to bed, immediately after reading everything I could about find the PML brain infection/JC virus connection and its risk factors for people who rely on the drug Tysabri.

Here are some things my sistar--that's what we call each other, because we see one another as stars in the ways of artistic abilities and how bright we shine ;]--here are some things that my sistar doesn't know. 

She does not know that the day I heard her diagnosis, my first day of classes my sophomore year in college, I skipped my evening rehearsal and practice session because I couldn't stop crying in my bed. My roommates didn't know what to do to console me. I didn't really know what her MS diagnosis meant at that time, but I knew that I felt helpless and confused. 

My sistar doesn't know that whenever she is hiding a particularly rough time with her MS, I DREAM about her struggling in some way. Yes, I am psychic. Or, we are more connected than we know. I usually find out after the fact that she is indeed having an MS symptom, or having a problem with her insurance which is causing much stress, or something. What she doesn't know is that even if she doesn't fill me in while these things are happening, I know that something is going on before I hear what it is; I know, deep in my subconscious, despite my living across the country (cue creepy music here!). The dreams don't tell me what the problem is specifically, and some of you may be skeptical that this realistic, but I promise you that it's real.**

My sistar doesn't know that I sometimes have entire days or nights of extreme concern, like last night, that MS research isn't moving fast ENOUGH. She knows that I care, that I pay attention to what is going on with the MS Society, and that I'm partaking in a study for higher-risk relatives for developing the disease in the future. I don't tell her about my own moments of despair and disbelief (still, after seven years!) that she deals with even half of what she does. That she has MS at all! We don't often talk about it.

She doesn't know that I've been planning on writing this guest post for a while about how I compare her to a blue heron, but I know that she will take that as the humongous compliment that it is! You see, blue herons build their nests strong and high up from the ground, and the nests that are so firmly built due to sheer determination from the majestic fowl make it so that the herons couldn't fall from the nest if they tried. 

I won't go into how I adopted the blue heron as my spirit animal of sorts (a post for another day?), but I have strived for many years to be like the blue heron. I want to build my nest high off the ground so that I have a clear perspective. I want my "nest" to be strong: made of the best materials, put together in such a way that my "foundation" supports me, even in forceful winds. I have used this analogy first and mostly for my trumpet playing--if I practice the right basic sorts of things, and put them together in a solid way, building on my foundation every day, without choosing a lower branch (the easy way out) or lesser materials...I will never fail. It would be impossible to! 

I also use the blue heron as a more general analogy for life. I want to choose the right people, activities, values, career choices, etc., for my life, and I want to use my varied skills to keep building a stronger and stronger life for myself based on what I know is best for me. Blue herons are constantly seeking out sturdy sticks to further fortify their nests. They choose the best materials they can find, they aren't afraid of heights, and they are relentless. See how this could apply to...well, everything? 

Anyway, my sistar doesn't know that I believe she is a strong and mighty blue heron. She does so many things, and she does them all well. She is not a blue heron because she has MS, but her MS struggles are like a reoccurring, frustrating, downright UNWELCOME wind that sometimes blusters into a full on blizzard or sandstorm. Whatever the weather, or the forecast ahead, she will be fine, because she is an intelligent blue heron. 

Here's hoping for continued, vital research better understanding, preventing, and treating MS, and here's to the blue herons of the world! Thank you for allowing me to guest post, Kayla!

Sistar Traci

*Mostly for my mother's peace of mind: I made up for my sleepless night by taking a four hour morning nap after having a cup of chai tea and now feel quite well rested!

**So, dear Kayla, now that you know about my psychic abilities, you may want to consider filling me in on such things sooner!

Here's a closing question for all of you reading: How do you channel your inner blue heron?

Tuesday, March 5, 2013

The Troubling Theories of Gabor Maté

The instigator of this post has been sitting in various to-do piles for quite some time. The August 2012 issue of The Sun featured an article with Dr. Gabor Maté and I quickly realized that he was the guy I was trying to reference and remember when writing this post. Maté is the guy who posits that stress and poor emotional patterns are the direct cause of disease, including MS. He theorizes that specific emotional patterns and personalities are directly correlated to various diseases. As I mentioned previously, the so-called MS personality is mostly about repressing emotions. The interview can be read online here. Some quotes from the article:

"People who have a chronic illness of any kind - cancer, multiple sclerosis, rheumatoid arthritis, fibromyalgia, inflammatory bowel disease, chronic neurological and skin disorders - often fit certain personality profiles. For example, they tend to pay a lot more attention to the needs of others than to their own. They get caught up in their job or their role as  caregiver rather than looking after themselves. They also tend to suppress the so-called negative emotions, such as sadness and anger. They try not to acknowledge these emotions even to themselves. And, finally, they tend to think they are responsible for how other people feel and to be terrified of disappointing others who are important to them. So an overwhelming sense of responsibility and self-suppression is what tends to characterize the chronically ill."
"Anger that is repressed can also turn inward. People who repress their anger can actually suppress their immune system, making it turn against itself. When that happens, you're going to get autoimmune disease. Anger and the immune system have the same purpose: to protect boundaries. The immune system does its job of attacking foreign particles, and anger does its job of keeping out human invasions."
Maté uses famed cellist Jacqueline Du Pré as a classic example of the MS type in some of his writings. He describes Du Pré as someone whose only emotional voice was through her cello - as a musician she was known for her passionate and exquisite skills of expression.

(On a related Du Pré note, I should sometime write about the rather disturbing film version of her story!)

Maté does make somewhat of a point to stress that he is not saying that patients are to blame for their diseases. Rather, he states that our emotional patterns are coping mechanisms that we don't choose, and are often "unconsciously transmitted, multigenerational dynamics." Well, even so, Maté makes me feel like crap and very much like I brought this on myself. However, the fact that I finally wrote this post and can now officially recycle the magazine does make me feel a little bit better. 

What do you think about the idea of an MS personality?

Wednesday, February 6, 2013

My Lame Elevator Shame

Hey there, MS blog world! I'm still here, my recent absent due to the swirl of busy I call my life. This late-night post is once again fueled by stimulants and explores one of my many neurotic quirks.

I tend to worry too much about what other people think. Just in general, and in many particular areas of my life. I do cognitively accept the tenet
What other people think of me is none of my business!
but taking it beyond that mental, rational level is another thing entirely. In terms of how this relates to my MS, I work hard to "look so good" in public, even though I hate hearing that phrase constantly from the people who do know about my health. I mean that I work hard to appear "normal" - to simply be another young professional, a fun friend and colleague and relative, and just generally someone who has it together. My mom sometimes questions why I can't let this guard down more around the people that do know about my health issues and who would certainly love and accept me even if I let some of my challenges show a bit more. I'm not sure why I can't, but it is something I struggle to do.

When my symptoms in the past were very much visible and there was nothing I could do mask them, I hated feeling like people might have thought I was drunk or super clumsy or something else outside of the image I like to portray. The way I felt was almost ashamed, even though of course I cognitively know that feeling isn't an accurate or appropriate one.

Now that most of the time my struggles are primarily invisible or at least easy enough to minimize in appearance, I find that I still feel this quasi-shame in certain situations. A big one - both back in the days of very visible symptoms as well as now - is taking the elevator. For some reason, I've long had it in my mind that anytime I'm only going up only one floor and the staircase is right there, the elevator just isn't an option. Three floors or more, sure, no problem. Two floors, on the edge, depends on various factors. But one? Stairs for sure, unless I've got a ton of stuff with me or something like that! It's not that I now or ever have ever in the past judged others for taking the elevator, but I somehow have a perception that others would certainly judge me in the same way I judge myself.

When I could barely walk - the days when I absolutely should have given in and used the cane - I would usually (but ridiculously on my part not always!) give in and take the elevator in the building I had to ascend and descend floors in on a daily basis. But as I would be standing there waiting for the doors to open (always seeming to take forever!) I had an intense feeling of shame or embarrassment or fear of judgement, hoping desperately that as few people as possible would see me. The really comical thing is that I was truly opening myself for legitimate judgement those times when I stubbornly took the stairs when I could barely walk. The process of literally lifting and dragging my one right foot up each step was ridiculous and if seen would surely make anyone question why on earth I chose to take the stairs!

Fast forward to now. My office is on the 2nd floor of the building where I teach and I frequently need to go up and down between the two floors. I almost always take the stairs when I make this trip, because I technically can without issue at this point, but also because of this bizarre lingering issue I have with elevator shame. However, I have come to the point where anytime I am carrying something - or when entering or exiting the building at the beginning and end of the day when I have a heavy bag strapped to my back, a heavy-enough purse in one hand, and a heavy rolling laptop briefcase thingy pulled behind me - I do take the elevator. (This sadly took me several difficult stair trips to come to the decision, which shouldn't be surprising if you've read any of the above rambling about my neurotic tendencies!) I do it because it is a physically taxing trip on an already very physically taxing day (which only makes issues of fatigue and pain worse over the course of the day) as well as the balance issues exacerbated by carrying heavy and awkward things. But as I stand there waiting forever for those doors to open, I still feel that old shame-like feeling and I find myself hoping that no colleagues or students walk by and see me there. And when they do, and we smile and say hello as I stand there and they head up the stairs, I feel a horrible, almost burning, crushing sense of someone finding out some great embarrassing secret. Isn't that ridiculous!! Again, I cognitively KNOW this is ridiculous, but I still FEEL like this so very often. How can I banish this lame shame? Any tips?

source: saracmd