Inspirational People

The Opportunity of Adversity

Posted on by sherYl555

Last week, my arthritis friend Jen H. sent me the video you see embedded below. Before I even watched it, I knew I’d be writing about it here. The title alone was enough to indicate to me that double amputee Aimee Mullins probably had some radical thoughts about living with a disability.

Aimee takes the topics of disability and adversity and masterfully spins them on their head. “We [people who face adversity] are changed, we are marked, of course, by a challenge, whether physically emotionally or both,” she says. “I’m going to suggest that this is a good thing.”

A good thing like a Martha Stewart good thing? Nope. Not even close. A good thing like your life could potentially be transformed if you can begin to believe that adversity should be embraced, rather than overcome. “There’s a difference in a medical condition and what someone might do with it,” she says in the talk.

Aimee was born without calf bones and had both legs amputated below the knee when she was an infant. She has essentially lived her whole life “researching” this topic. I want to ruminate more on the ideas she covers in her talk and then write more, but for now I’m going to post the video so you can take a look.

Watch and prepare to be inspired!



How will you meet adversity today?

Aimee Mullins: The Opportunity of Adversity [via my friend Jen H. and TED Talks)

Guitar Strings and Joint Pain:
Musician Chris Kirby Changes His Style

Posted on by sherYl555
Photo of Chris Kirby by Matt Reynolds

Photo of Chris Kirby by Matt Reynolds

I became aware of Chris Kirby a few months ago while browsing iTunes by searching “arthritis.” Low and behold, I stumbled across Chris’ “Arthritis Song” from his album “Chris Kirby on Rum & Religion.” I was immediately captivated after only sampling the 30 second preview. I promptly purchased the song and chills ran through my spine the first time I listened to the entire piece. Chris so eloquently and poetically expressed things I have felt about my arthritis, especially when I was first diagnosed 11 years ago.

Feeling like I had discovered something really special that I couldn’t wait to share with my arthritis friends, I immediately googled Chris and sent him a note, inquiring if he struggled with arthritis and if he would do an interview for my blog. Lucky for us, he said yes! The internet is an amazing thing!

It took me a ridiculously long time to write up this post. It was extremely important to me that I do musician Chris Kirby justice. He is a talented man, who shared details of his struggle with arthritis via his tune “Arthritis Song” and also with me via email. Today, I am grateful to be able to share his thoughts and introduce you to his music.

To read the lyrics of “Arthritis Song,” click here. A link to listen to the song appears at the end of the post. Following is my Q&A with Chris Kirby.

Q: What symptoms were you having that led you to see a doctor?
A: One night at a gig, I blew out my hands playing guitar. I was trying out heavier strings. My hands just got very stiff all of a sudden and for a while afterwards I found it difficult to play. Then the tension seemed to spread to my wrists. I found my fingers going cold and numb often. I figured after a while of resting it would go away, but it didn’t, so I went to the doctor with this “chronic tension” mystery.

Q: When you were initially diagnosed with arthritis, what were some of the thoughts/fears/questions that ran through your mind?
A: When my “Rheumatic Factor” came up positive, I thought – “Arthritis??? Will I be able to keep playing music? Is this as far as I get to go?” It was a lot to digest. I immediately started adapting my playing style to a more relaxed method. I had to get the “virtuoso” idea out of my head and focus on accompanying/complimenting my voice instead.

Q: Where do you seek/find support for what you are going through, esp. around the time you were seeing doctors for your symptoms? Continue reading →

Michael J. Fox: A Model Patient

Posted on by sherYl555

Always Looking Up Book by Michael J. FoxI recently watched an ABC special titled, Michael J. Fox: Adventures of an Incurable Optimist. I watched because I was intrigued after I read an article about how Fox (diagnosed with Parkinson’s disease 18 years ago) has become a major patient advocate for the disease, all while remaining an optimist about what the future holds for him. In this special he offers his philosophy on dealing with the disease and also interviews a number of people about the concept of optimism.

As a patient, I’m always very interested in learning how others cope with a chronic problem. As a person, I’m intrigued by what makes people tick.

There were a lot of quotes from the one-our episode that I found thought-provoking and inspiring, so I decided to highlight them in a handy little blog post so that we could all be inspired.

The only unavailable choice was whether or not to have Parkinson’s, everything else was up to me. I could concentrate on the loss or I could just get on with my life and see if those holes starting filling in themselves.

For everything this disease has taken, something with greater value has been given, sometimes just a marker that points me in a different direction that I might not have otherwise traveled.

What i find is that it’s important that if I am going for that goal or if I am going for that thing, is that every moment I am short of that, isn’t a bad moment because I’m not there yet. It’s okay to just be striving.

Do the next right thing and hopefully something will happen.

I think that’s where the hope comes from. If I could do everything then I have no reason for hope. And there’s something in the hope that’s even more powerful than the realization of whatever the hope is for.

You are most optimistic when you feel you are not alone.

Optimism doesn’t mean being in denial. It’s not Pollyannish. It allows for the fact that things are tough. There can be tough optimism: An acceptance of obstacles, with a willingness to fight through them.”

This quote from musician Ben Harper (who was interviewed in the episode), also resonated with me:

Music is, to me, the soundtrack to optimism. Silent optimism is optimism at eight, when it could be at ten.

The quote that I found most interesting was: “Do the next right thing and hopefully something will happen.” I’m often so worried about “doing things right” that sometimes I lose sight of whose “right” I’m trying to live up to. Usually, it’s some sort of “rule” that I’ve created in my head that only makes life harder for me. The “next right thing” sounds much more achievable and spiritual. It sounds like something I just need to be open to, not something I have to agonize over for an entire day, then make a decision about, then worry about whether or not I made the right decision.

Tomorrow I plan on getting up and walking out that front door with the confidence that my day will be full of “next right things.”

Watch the entire special here.

Learn more about the show here.

And I’d be remiss if I didn’t mention that this TV special was also created to help promote his new book, Always Looking Up: The Adventures of an Incurable Optimist.

What are your tips for remaining optimistic in the face of chronic disease?

The Mental and Physical Frustrations of Arthritis

Posted on by sherYl555

Jason Crigler AlbumDuring the holidays, I read about musician named Jason Crigler who suffered a brain hemorrhage that left him temporarily unable to speak or walk. He also had to teach himself how to play guitar again.

Don’t worry, I’m definitely not trying to compare arthritis to a brain hemorrhage, but there is something about this quote from Crigler that I think rings true for a lot of us arthritis warriors.

“I knew what to do; I just couldn’t physically do it,” he says. “It was painful, because my hands were so tensed up, like claws almost. I’m still working to get that open all the way. But I knew mentally what to do, and I could hear what to do. Physically doing it was the issue.”

Nothing is more frustrating than trying to do something as simple as say, open a can of soup, only to discover that either you simply can’t do it, or you can do it, but with great difficulty. If you haven’t had arthritis all your life, you can remember when opening a can of soup was not hard. But now it is, along with a lot of other things. We adapt and we get through it, but it still sucks. For me, the momentary frustration of not being able to do something that I believe I should be able to do with ease, does not go away. It’s always there. Sometimes I get teary. Sometimes I’m angry. Sometimes I just roll my eyes, as if to say to my arthritis, “I know what you are up to, but can you cut me some slack today?”

But I keep moving forward, and I remind myself that there are good days and bad days. Here’s to a year where we all strive to “keep moving forward.”

Read More on Jason Crigler [via NPR.com]

There was a documentary made about about Crigler’s miraculous recovery, which looks to be very inspiring. Check it out here.