The Opportunity of Adversity

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)

I’m Certain It’s A Beautiful World

I’ve been listening to Carolina Liar’s song, “Beautiful World” a lot lately. Upon my first listen, I immediately connected with the opening lyrics and chorus and wondered if the lead singer could maybe be signing about someone with arthritis or chronic pain because the words he chose struck such a chord with me:

Here it comes in the morning
I’m just trying to forget
Keep it real, keep it simple
And somehow just get out of bed
And this city is endless
I’m as cold as its stone
Yeah this city is endless
And I’m, I’m walking alone

CHORUS
Sunlight creeps in between the curtains
Lose the sheets there’s no time for sleep
I lie, I pretend ‘til I’m almost certain
It’s a beautiful world

Let me rephrase that slightly. The words struck such a chord with me, except for the part about how “there’s no time for sleep.” I need my sleep and there is always time for it!

A little online detective work revealed that the song was actually inspired by the lead singer’s “friend who suffered from manic depression.” Singer Chad Wolf describes what his friend was going through. “Every day when the sun came up, it was constant anxiety – something he couldn’t deal with, yet here it comes every morning. It’s like watching the news every day. Sometimes you have to lie to yourself and pretend that the world is a beautiful place, when what lies on the other side is just madness.”

When you wake up tomorrow morning, think about all the things you are grateful for and know that no matter how the day goes, we live in a beautiful world. Sometimes we just have to work a little harder to see that.

I encourage you to listen to the song. Use the comments to let me know if it strikes a chord with you. No musical pun intended. 🙂

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

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

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?

Everything Is Amazing, Yet Nobody’s Happy

Comedian Louis CK does an excellent job of helping us all gain some perspective. There are a lot of things in each of our lives that make life difficult, but if we step back and look at the world we live in, what we have available to us is pretty darn amazing.

Appreciate all the good things in your life today: medication, friends, family, technology, Clive Owen movies, rheumatologists … I could go on and on. Have a splendid day!

(If the flash player doesn’t work for you, click here to view the video.)

If you like this post, please click on a link below to share with others. Thank you, arthritis friends!

Arthritis Today Magazine Boasts New Website

Arthritis Today Website

I recently took a self-guided tour of the new Arthritis Today website and I must say, I’m very impressed! I think the site has the potential to be one of the top resources for people diagnosed with arthritis.

A few features that I liked:

The Tin Mom’s Blog: I’m glad ArthritisToday.org has a featured blogger who will share her stories on a bi-weekly basis. Reading about someone else’s struggle and success is comforting and inspiring.

Your Great Ideas: This is an excellent feature. I love reading about how people have handled a situation that I have been in. It’s great to get different perspectives on things. I hope that the web editors soon begin to categorize the items posted in this feature to make it even more useful to sift through what will probably turn out to be a massive archive.

Web Extras: It looks like each magazine issue will feature content that is exclusive to the website. Cool.

Exercise Videos: An email I received about the website touts 40 free exercise videos. I checked out a couple and found them brief, but very useful. Photos of exercises are sometimes just not enough for me to figure out how to properly execute a specific exercise. If photos are more your style, those are offered, too.

Community:
I love that there is a community aspect built into nearly every part of the website, allowing for further discussions of the material presented. Leave comments after most articles, tips, blog posts, etc.

I can’t determine if there will be an archive of older issues or if they will only keep two issues online at a time. Currently, portions of the March/April and May/June issues can be found on the site. I hope they decide to build an archive of all issues, going forward.

The information available on the website is varied and hits all the major topics that I think people with arthritis would be interested in reading about on a regular basis. I look forward to watching their content grow!

One more note, then I’ll let you go explore… Not all content from the current issue is posted online, but that’s okay. I’m sure a lot of the content that is featured in various categories on the site was, at one time, featured in the magazine. I like that the website offers something more enhanced from what you can get in a single copy of the magazine. And I think the ability to interact with the content and with other people via this website will make it quite popular.

Go check it out and leave your thoughts below about what you liked or didn’t like.

Chronic Pain Is Highlighted On TV’s “House”

Episode Title: Painless (Season 5, Episode 512)
Writers: Thomas Moran & Eli Attie
Original Air Date: 1-19-09
Summary from the FOX.com website: House (Hugh Laurie) and the team take on the case of a man living with such severe chronic pain that he tries to kill himself.

While the story of this episode begins fairly bleak, I know some people will find the content to be very realistic, which is exactly why I’m blogging about it. Personally, I am thankful that a television show has given chronic pain some cred. Chronic pain is certainly not your typical TV “disease of the week,” yet it deserves to receive some attention because it is largely misunderstood.

I’m not a regular viewer of House, but I do know that House himself suffers from chronic pain, which is part of what drives him to look at every possible angle in order to properly diagnose the chronic pain patient. Like a lot of us arthritis warriors, our disease can sometimes be difficult to identify. I know people who have been in pain for years, yet have gone that entire time without a true diagnosis.

We all know, all to well, that time spent in pain (diagnosed or not) is emotionally and physically taxing, as it is shown in this episode. Two quotes from “Painless” that perfectly illustrate that point: Patient: “I pray for strength more than hope.” (Wow, I can relate to that quote on a lot of levels.) House: “He’s [the patient] not in pain because he’s depressed. He’s depressed because he’s in pain.”

Another quote that really struck me from the episode is this one:

“You’re alone, that’s why you can handle your pain,” the patient explains to House. “No need to put up a front to be what anyone else wants you to be.”

This line makes me think that one of the writers responsible for this episode had some personal experience with chronic pain because it is dead on. On days that I don’t feel so great, but have to go to work, I’m definitely putting up that front. It’s become so automatic that I don’t realize it until I come home exhausted. Sometimes putting up that front is a necessary part of coping, I would get tired of hearing myself complain if I grumbled each time that I was experiencing pain. Plus, I think complaining on a regular basis would make my pain more difficult to manage. Anyone else agree with me?

I recommend giving this episode a look, so I embedded it in the post. Watch it with a friend or loved one and use it as a jumping off point for a discussion about your chronic pain. You can also check it out on Fox.com or Hulu.com.

If you have seen other shows deal with this subject, or arthritis, please let us know in the comments. I’d love to check them out, too.

I’ll leave you with this quote:
“Gotta let the phone ring more than four times when you are calling a cripple.” -House

Educational Seminar On Sleep for Rheumatoid Arthritis Patients

I don’t know about you, but if I don’t get a good night’s sleep, I am worthless the next day. Sometimes the pain from my arthritis prevents me from getting a quality night’s sleep, other times, I prevent myself from getting a good night’s rest by simply staying up too late.  So, I was excited to learn that a great site called CreakyJoints (from their website: a community for people of all ages with arthritis) will be hosting a free patient education seminar about getting a good night’s sleep on Thursday, February 12 from 7-8:15 p.m. ET. Participants have two options for joining.

Register to participate by clicking here. For more information about the event, click here.

If any of you out there have your own tips about resting well at night, please feel free to share them in the comments.