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?

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. 

photo credit: http://www.wilddelmarva.com

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!

Muah,

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?

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?

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

5 Things Friday: 5 Reasons I Haven't Been Posting Much

It's been awhile once again. Life has been busy, probably busier than it should be. Here are some of the things that have been keeping me busy:

1. My mother, sister, and I launched a new fun project and business venture, The Daily Quipple. Each day features a cartoon (a quipple!) drawn by my fabulously talented sister, Traci. Our mission is to share a daily jolt of fun and/or inspiration with the world, so please check it out for some fun and inspiration! We also sell merchandise featuring the quipples. This project is fun and rewarding, but has added plenty of work to my workload. I do all the web stuff. Here are some of my favorite quipples so far:

     

2. The dreaded day of disclosure is done. I've been working up to for a while the idea of disclosing my MS to the two colleagues I work most closely with. It is at the point that they probably should know, and while I knew they would be great about it, I put off the telling for a long time. I put it off mostly because working at this job was like a beautiful haven where MS wasn't a part of the picture. Of course, I knew about it, and was still very much aware of its effect on me and my work, but the fact that no one else knew made me feel like the healthy, young, energetic professional they all saw me as. This was a really wonderful feeling, as the disease occupies far too much space in the majority of areas of my life. Anyway, I told them and they reacted just as I knew they would. I'm glad I told them, even though I cried during the telling. (For those who don't know me personally, this is a HUGE deal. I've gone 6-7 years without crying at all in the recent past, and I haven't cried in front of another person for much longer, and in front of a person outside my very small circle pretty much ever.)

3. Fall is my favorite season (except for its ridiculously short duration, at least here in the tundra) and luckily I have been able to spend some time enjoying the colors and temps.

                            

and luckily my favorite adventure buddy was with me!

4. Remember my 30x30 list? I'm feeling pretty bummed out that it is looking like a truly impossible feat to complete my ridiculously ambitious list by the time of my 30th birthday in around 4 months. I haven't even posted the list here or anywhere else yet, but trust me, it is an ambitious list for anybody to tackle in one year, much less a person with 3+ jobs and MS and other assorted health challenges. But who knows? Maybe I'll rally and fight like crazy to defy MS and life in general and finish the thing. My always wise mother suggests that I just extend the deadline until the end of my 30th year. That feels a little bit like cheating, though, and upsets my perfectionist and overachiever qualities. However, it looks like that might have to be the answer.

5. In addition to neglecting this blog, I'm also woefully behind on chats with friends (Heather and Gwen, I'm talking about you and hopefully will soon talk to you!) and behind on reading the several MS blogs I follow, so that's where I'm headed now!

Hope you all have a lovely weekend!

                            

On Self-Medicating

Tonight's fun math equation:

Large Iced Coffee x 2 + Grande Iced Latte + Starbucks Doubleshot + 2 amphetamine pills taken later in the day than advisable = sleep tonight? doubtful.

But - in my perhaps biased opinion - necessary and worth it to get through my day. Why? Another equation for you:

long day with busy schedule + haven't been sleeping well generally this week + you know, that whole MS thing + the energy/focus depletion side effects of various meds used for chronic nerve pain secondary to that whole MS thing = why i need a little help on days like today

So, tonight might be a sleepless one. I only wish I could use all that non-sleeping time to get things done, but I don't think my focusing skills will last very long. I will probably spend far too much time with my friends Hulu and Netflix into the wee hours. But hopefully sleep will come to me before morning!

My night

Tonight I'm playing some blues, funk, soul, disco, and classic rock in an orchestra backing up a 15-piece funk band. It's a fun way to transition from summer into the school year, where I tend to play more traditional classical music.

a cool concert venue...this is the view
from back behind the stage on a little hill

Speaking of that transition, I'm blown away by how fast summer went by! It's a cliche and I know I feel like this every year, but it really seems worse this year. It's probably because I had been expecting the summer to be easier on me than the school year but it turned up to be a toss-up - about the same or maybe a bit worse! Looking at my blog posting history, it would seem that summer wins the busyness contest, since I posted significantly less often.

I'm a little bit concerned because my fall schedule is going to be pretty intense and I'm afraid I'm not quite prepared for it healthwise. I need some more downtime to actually rest and recover, but I'm not going to get it. But for tonight I'm just going to have fun playing some great tunes on my horn on a beautiful summer evening.