Magazine Monday: Playing the Result

The above picture is a shot of the Letter to the Editor page in a recent issue of  Good Housekeepingmagazine. A previous issue had included an interview with Michael J. Fox and the writer of this letter talks about being diagnosed with MS and adopting Fox's motto of "Don't play the result."

I'm a big fan of Fox and would recommend his memoirs (such as Always Looking Up: The Adventures of an Incurable Optimist) to anyone, but perhaps especially to people dealing with chronic illness. Anyway, I LOVE this idea of not playing the result. So you have MS and might one day be in scary place X, but that doesn't mean that you should plan to immediately take up residence there mentally and emotionally. Fox has Parkinson's, but he doesn't play that role in his life - he continues to play roles of husband, father, actor, advocate. I know I'm sometimes guilty of playing the result, so I'm glad Linda McEwen took the time to write this letter to GH that happened to jump out at me and make me reflect on those wise words. Don't play the result!

Incidentally, this same issue featured an interview with Meredith Vieira in which she talked some about her husband Richard's health, including the ways she thinks it has improved her children as people to have a dad with MS and other health problems. I'm also big fans of Meredith and Richard, and I'm pretty sure they don't play the result either. How about you?

Wabi-Sabi

wabi-sabi, in Kanji

Following a trail of links while traveling in blog-land today, I happened upon the Japanese term Wabi-Sabi.  One of those words that is pretty much impossible to simply translate into English, it's often described as a "way of living that emphasizes finding beauty in imperfection, and accepting the natural cycle of growth and decay." This is a major simplification; one site likened English translations of the term to be as difficult as describing the taste of chocolate. In any case, I love the idea of this concept, or worldview, and will add it to the list of Asian stuff I find awesome, like Thai food, Zen, tea, gardens, and Kaizen. MS offers plenty of imperfection, as well as cycles of growth and decay, and my MS muse is all about the wabi-sabi way. There is much beauty to be found, even in MS-land.

Challenge Day 27: Light a Candle

widely attributed to Eleanor Roosevelt
adapted from a Chinese proverb

I think the above quote is inspiring and very applicable to life with a chronic illness. I believe that feeling upset about the darkness and expressing those feelings can be important, but whenever it's possible it's always better to find a way to light that candle. This has tons of meanings and applications - from finding ways (perhaps new ways) to be as physically healthy as possible to finding new ways to be emotionally and spiritually healthy and engaged with the world to taking education and turning it into empowerment and advocacy. I hate MS and bemoan much of what it means for me and so many others, but I also celebrate the insights and truths that my MS muse has illuminated for me that I otherwise might not have understood.  I could go on and on, because light and fire are such rich metaphorical playgrounds, but with quotes like this, I think the words speak for themselves. It is my hope that this blog can serve as a lit candle.

brought to you by HAWMC Day 27 prompt

My Tysabri Treats

Grabbing a delightful infusion nap.

I love infusion days! This might surprise you. After all, who likes the idea of getting stuck with a needle and hanging out for a few hours as a (potentially dangerous) drug drips into your veins? I admit, there might be a few downsides, but for me there are a wealth of upsides to that Monday that comes around every 28 days.

First of all, I'm extremely grateful for the drug itself. Yes, the risk of PML can be a little scary, but for now anyway, the benefits outweigh the risks for me. Before I started Tysabri 3 1/2 years or so ago, I was having relapse after relapse. It was almost like clockwork, every month or so. Lots of bad stuff was going on: serious problems with walking, balance, and more. Shots weren't helping and things were not looking so great until my neurologist suggested I try Tysabri. I haven't had a relapse since! So, I am extremely grateful for Tysabri, especially when I imagine where I might have been right now without it.

When I began Tysabri, I had to travel four hours (one way!) to get infused. Super-supporter and trooper that she is, my mom faithfully drove the 8-hour jaunt every month. The trip, of course, required eating out, and since I received my infusions in a much larger area than I lived in, it was an opportunity to dine at some of my favorite places that I normally didn't have easy access to. Thus began the tradition of the Tysabri Treat. This usually took the form of lunch at Panera and a delicious smoothie from Jamba Juice. Mmmmmm. For the last year or so, I've been able to receive my infusions much closer to home. Sadly, no more Panera or Jamba, but the Tysabri Treat lives on. Before the infusion, we have lunch at a fantastic Thai restuarant and afterward pick up a Spicy Dark Chocolate Mocha or similar treat from Caribou. Especially as someone who doesn't eat out all that often, this little tradition of associating Tysabri infusions with a little treat makes me happy.

Now, on to the infusion experience. Infusion nurses tend to be super nice people. There are a few nurses in particular I rather miss from my old infusion center, but the gals at my current place are all quite friendly too. Nice people are always a great thing to have in your day. Nice people eager to bring you juice, cookies, warm blankets and more? Even better! Next, hospital beds are pretty awesome. I adore being able to adjust the height of my head and legs. I'd totally love to have one at home. I frequently fall asleep during my infusions, and it's often some of the best sleep I get! When I'm not sleeping, there's another bonus: tv with cable! I haven't had this luxury in years now, which is just fine as I watch the things I want to watch on hulu and netflix, but every now and again, I love the option of just scanning the channels or settling in for a little HGTV.

Finally, infusion days almost always remind me how very lucky I really am in the health department. Sure, I have an incurable disease and quite a few associated little problems...but it could be so much worse. I get my infusions at a cancer center, and I'm the only Tysabri patient they see. So many of my fellow infusion-getters are in a much more dire health situation than I am. And many of them suffer myriad unpleasant symptoms as a result of the infusions they get. I usually have a headache for a few days after my Tysabri, but it doesn't take my hair or send me running to the toilet! Seeing the bravery and strong spirits of so many of these patients always reminds me to be grateful for the health that I do have and for the drugs that do help me.

This positive piece of art hangs in the waiting room at the cancer center.

Sure, there are a few unpleasant needle pokes, but overall, Tysabri days are good days. I encourage all of you to use the opportunity of getting an infusion, or giving yourself a shot, or any other disease-related activity, to give yourself a treat and/or to find the treats that are already all around you!