The Role of Facebook Communities in Social Participation for Persons with Rheumatoid Arthritis: A Content Analysis

Below you will find the research poster my colleague Kristin Jones, OTR/L and myself presented at the American OT Association’s annual conference and the World Federation of Occupational Therapy Conference in 2014. More details to come soon!

RA Social Media AOTA Poster Pie Chart Gif

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Bringing Home Baby: Tips for Meeting the Caregivers’ Basic Needs

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Being born and growing up is a tiring job, as is caring for a little one!

It’s hard to put into words how simultaneously joyful, exhausting, transcendent, stressful, surreal, and miraculous the first few months home with an infant can be.  Now that I’m emerging from the fog but the experience is still fresh in my mind, I’d love to share some tips and strategies that helped me adjust to parenthood* over the last five and a half months.

While pregnant, I found countless resources for how to care for a newborn, from feeding to sleeping to swaddling to safety. However, there were less resources available for how to care for myself and other primary caregivers in the newborn days. Thus, I will focus on these strategies as they are not as adequately covered elsewhere.

Caring for the Caregiver(s)

Charlie’s second day on earth, enjoying a calm moment at the hospital.

Many countries have postpartum practices that allow at least the mother to rest and recuperate in the early weeks after delivery (if not extended paid maternity and paternity leave). Since the United States is sorely lacking in this regard, I would strongly urge all new and prospective parents here to prepare just as thoroughly for how they will take care of themselves as how they will take care of baby in the postpartum period.

Here’s the hard thing to understand about the first months home with an infant before you experience it: everything that has to get done is not objectively very hard to do for a short period of time. The difficulty arises from the sheer volume and pace at which you must complete tasks, which are presented to you in a completely erratic and unpredictable order, without adequate rest and while your body is still recovering from delivery (phew!).

You might have heard the phrase, “Put your oxygen mask on first” with respect to airplane safety. Looking back, I know that I was simply much better poised to take care of Charlie’s basic needs when my needs were met to the extent they reasonably could be.  Here are the strategies that worked best for our family.

Prioritize Sleep (Which Likely will Involve Getting Help)

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Nothing sweeter than a sleeping baby…unless you also count well rested parents!

If you do nothing else, set up systems that will allow the primary caregivers to get some uninterrupted sleep. You would never expect someone to simply push through extended periods without food, yet many feel they should be able to power through chronic sleeplessness after the birth of a child. This is simply not physiologically or psychologically healthy for most people (aside from a lucky few).

Recent studies have found that sleep deprivation is correlated with reduced cognitive functioning and such adverse physiological effects as reduced endocrine and metabolic function. Psychologically, some studies have found that fragmented maternal sleep is correlated with increased depressive symptoms, and sleep deprivation is generally associated with more negative mood states. Interestingly, another recent study found that postpartum sleep deprivation and fatigue appear to affect both primary caregivers similarly, thus it would behoove the family to take means to protect the sleep of all primary caregivers.

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It’s not safe for you to fall asleep with the baby asleep on you, unless someone else is committed to watching the baby while you both rest (to make sure the baby doesn’t get smothered or roll off).

I anticipated that sleep deprivation would be the most challenging aspect of the first 3 months home with an infant, and it was. I had prioritized sleep long before I knew the link between restorative sleep and reduction of rheumatoid arthritis and other autoimmune disease activity, and my main plan was to “sleep when the baby sleeps.” However, this was not consistently possible due to adult and infant circadian rhythms being so different, an infant’s need to feed every 1-3 hours, all the time it takes to soothe the baby to sleep, the fact that infants are often noisy sleepers, and some additional breastfeeding complications which required that I wake up regularly to feed the baby or pump breast milk.

So, what specifically can one do to cope with the lack of consistent sleep? My best advice is to maximize your sleep opportunities. Here are six strategies that helped me:

1) Have someone take the baby away from you in between feedings and rock/lull them sleep and take care of other essential tasks.  This was the single most helpful thing anyone did for me in the 4-6 weeks after Charlie was born. When you arrange this, I strongly urge you to follow the American Academy of Pediatricians’ recommendation to ensure all caregivers who will come into close contact with an infant be up to date on their TDAP (whooping cough and tetanus) and flu vaccines, as these can be fatal for infants.

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Bless her heart…my sister bringing Charlie in to my room for a feeding, then swaddling him and taking him downstairs so I could sleep until the next feeding.

I was exceedingly lucky to have support from my husband and extended family. For those who don’t have family or friends who are willing to help in this way, consider hiring a post-partum doula or a nanny/babysitter. It might seem strange to spend money on this so early in the child’s life, but sleep deprivation takes a real physical and mental toll on most people and you will be better poised to meet the demands of new parenthood if your basic needs are being met.

If people offer to help who might not feel capable of taking care of the infant, you can also have them sign up to perform household tasks via a website such as LostaHelpingHands. This will give you more opportunities to sleep when you otherwise would have been doing chores.

2) Set “sleep hours” and only allow yourself naps between those hours. This is something I simply learned through trial and error. When I tried to nap around the clock, I often ended up in a frustrating position where I often could not sleep when the opportunity presented itself.  My circadian rhythm dictated that I receive sleep within a certain time frame it was accustomed to, so giving myself “sleep hours” was a nice compromise that afforded naps yet prevented me from getting so off schedule that I could not sleep even when I had the opportunity to do so. It also had a huge psychological benefit by giving me a sense of routine. My ideal sleep hours were between 7pm and 11am, but I suggest that you play around with it and determine what works best for your body’s rhythm.

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Gabe helping with Charlie while I slept.

3)  Try to get at least one 3 hour chunk of sleep per day. Since adult REM cycles are around 90 minutes, I found that my quality of life improved substantially when I was able to get three hours of sleep in a row (ideally twice a day, but at minimum once a day). After my husband went back to work, he would watch Charlie from approximately 7-10pm while I slept. It became very psychologically and emotionally important for me to know that this sleep opportunity would present itself each day.

4) Avoid “screen time” before going to sleep. It was so tempting to check Facebook before going to sleep, despite my profound exhaustion. While it was important for me to feel socially connected during such a disorienting time in my life, I found more success when I followed the recommendations of recent research which shows that exposure to LCD screens can decrease melatonin up to 22%.

5) Approach your sleep time as “rest time” to take the pressure off. After a couple weeks of sleeplessness, I started becoming panicky about maximizing each of my sleep opportunities. This anxiety of course worked against me, as it made it harder for me to fall asleep. My husband suggested taking the pressure off by viewing my sleep opportunities as “rest” opportunities, which helped immensely. It was important to just close my eyes and get a break, whether or not I could actually sleep during that time.

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This was a happy moment about 4 hours before my (painful and debilitating) third case of mastitis (a systemic breast infection), which required me to wake up every 3 hours to pump breast milk or feed Charlie.

6) Be flexible, and understand the relationship between infant feeding decisions and caregiver sleep. Decisions  about how to feed your infant are inextricably linked to the mother’s potential to obtain consecutive hours of sleep.  If you choose to breastfeed exclusively from the breast (as opposed to providing pumped breast milk), your sleep potential will logically be reduced as compared to exclusively formula feeding, or “combo feeding” (which includes combining breastfeeding, pumping and/or formula feeding), assuming you have some help available.  As with most parenting decisions, feeding decisions don’t exist in a vacuum and what might be best for one entity might not be best for another. Only you and your family can decide what is right for you. It took some trial and error for us to settle on a solution that provided best for both Charlie’s and my health and wellbeing.

Employ Pain Management & Prevention strategies

After the birth of a child, the mother’s will likely experience some pain during the recovery process. The most helpful physical and pain management strategies for me were:

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A few hours after Charlie’s birth, while the intense pain medications had not yet worn off.

1) Stay “on top of your pain,” by which I mean employ pain management strategies before you are in dire need of them. As always, consult your doctor for all medication related decisions. I found that I was much better poised to take care of myself and Charlie when I took my pain medication on a regular schedule (especially during the first week) rather than waiting until the pain was unbearable.

I also used non-medicinal pain management strategies such as deep breathing, icing, distraction and a belly wrap (which was particularly helpful while moving from sitting to standing). If you cannot take pain medications or prefer not to, I would strongly recommend preparing non-pharmacological tools and strategies prior to delivery, as you may be too overwhelmed to sort through them later. The American Academy of Pain Medicine has some good resources for learning more about pain and even has a video on non medicinal strategies for combating pain.

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It may appear that I am leaning towards Gabe for a snuggle, but I actually could not physically stand up any straighter than this at the moment.

2) Understand proper body mechanics when doing basic movements such as moving from laying down to sitting up at the edge of the bed, going from sitting to standing (in bed or from a chair), and going up stairs. As an occupational therapist, I’m a huge advocate for this! Knowing the most efficient way to perform basic movements will help prevent unnecessary pain and strain to your abdomen and pelvic region. Kaiser has a great handout with tips here.

3) Don’t be afraid to ask for help. It’s better to have extra help when getting out of bed than to realize you need help in the middle of a movement and risk falling due to pain!

Toileting: Prepare for bumps in the road ahead of time

Going to the bathroom is just one of those daily life tasks that one can’t simply put off postpartum. Here are some things to think about ahead of time:

1) How will you get to the toilet: Do you have stairs in your house? They might be difficult to climb for the first few days/weeks regardless of how you delivered. There is no shame in getting a “bedside commode” to use as a temporary toilet if you find it difficult to safely get to yours.

Gotta love prune juice!

2) How will you manage (probable) constipation: It’s not the most glamorous of postpartum topics, but constipation is very common postpartum (especially for those who delivered via C section). If you prevent constipation, you are less likely to have hemorrhoids and will avoid additional pain from straining. Stool softeners and prune juice are effective for many new moms (as well as expecting mothers).

I was proactive in preventing constipation the week before my C-section to give myself the best chance of avoiding constipation and I was pleasantly surprised that this strategy paid off!  It may feel awkward to think about toilet topics now, but trust me, pretty soon your daily life will involve a lot of bodily functions (on the part of your child if not yourself) so it’s best to get used to it now. I urge you to do anything you can do make your postpartum life easier on yourself so you can focus on your precious new one!

3) Post-Delivery Healing:  Educate yourself prior to delivery on things you can do to help minimize pain and maximize healing in your pelvic region. Your healthcare team should also provide specific recommendations for scar/incision management, preventing infections, and more. It can be easy to overlook these recommendations  when you are probably more excited to care for the new baby, but in the long run you likely won’t regret putting extra care into your own physical healing.

Prepare easy to eat (preferably one-handed) snacks/meals and drinks ahead of time

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Thanks mom for bringing over some delicious food (pictured at the back).

New moms are often encouraged to prepare food prior to baby’s delivery, particularly if they are feeling in the “nesting” spirit. In addition to the classic freezer meals, I would recommend making sure you have plenty of meals and snacks that you can easily eat one handed. Your hands will often be full with feeding, soothing, changing diapers or just holding your precious baby as they sleep, so one handed meals/snacks are crucial.

Additionally, always accept anyone’s offer to bring you food (you can even use a site such as MealBaby to organize meals).

Some of my favorite postpartum meals and snacks included:

1) Caveman, Zing, Kind or other similar “power” bars that have a good mix of protein, fat and carbohydrates, and/or trail mix.

2) Burritos and “wrap” sandwiches Pro tip: wrap them in a ziplock baggie and hold the burrito or sandwich by the bottom of the bag and slowly peel it back as you eat it, to avoid messes and also keep your hands clean.

smoothie3) Smoothies- You can never go wrong with a smoothie, especially one with lots of protein.

4) A water bottle with a handle and a long straw. This is absolutely crucial – the handle allows you to grab it one handed, and the straw allows you to drink while also nursing or otherwise holding your child. I can’t find a link to one with the same length of straw as the one I received at the hospital but this one looks promising.

5) Grocery delivery: See if any grocery stores nearby offer home delivery. For example, Safeway has promotions where your first delivery is free, and they offer discounts if you are flexible about the delivery time. Alternately, ask a visiting friend to pick up necessary items on their way over for a visit.

Prepare Your Home Environment to Make Life Easier 

Before the baby comes, assess your home environment and see if there are any opportunities where you could make life easier for yourself. Here are a few things that helped us (in addition to the toileting and meal preparation suggestions mentioned earlier):

My necessary items in my handy tray.

My necessary items in my handy tray.

1) Use a tray or other container for all the “stuff” mom will need. Before I confined all my necessary items to a tray within arm’s reach, I found I was constantly asking people to hand me things, from chapstick to power bars to my water bottle. Put everything on a tray and bring it wherever you will be sitting to avoid unnecessary frustration. Here are items I had on my tray:

  • Water Bottle
  • Phone (and separate camera if needed)
  • Hand Sanitizer and moisturizer
  • Chapstick, Eye Drops, tissues
  • Protein Bar and other snacks
  • Feeding baby items (nipple cream, pads, bottles, etc)
  • Baby items (swaddle blanket, burp cloth, extra clothes)
  • Pain medications and other medications as needed
  • Chargers for phone and other electronics if needed (e-reader, breast pump, etc).
  • Something for FUN, in my case a board book. I was surprised at how early Charlie could sustain attention to a book, and reading to him was fun for me too!
Pack 'N Play

Pack ‘N Play works as a changing station and napping area for baby.

2) Consider having baby care “stations” on each level of your house. We had a changing table (with diapers, wipes, extra clothes, etc) and sleeping areas for the baby upstairs in his nursery as well as downstairs in our main living area. The “Pack ‘n Play” worked well for us as it can serve as a changing station as well as a crib. The closer things are to arm’s reach, the easier your life will be in the early days!

3) Have a back up communication plan. Many will plan on using cell phones to communicate, but I would urge you to find a back-up plan or purchase something that will allow you to keep your cell phone attached to your person (such as an arm band or even a fanny pack!). Why do I give such an oddly specific piece of advice? Well, the day I got home from the hospital (2 days after Charlie’s birth) I dropped my phone onto the floor and couldn’t get out of bed independently. I couldn’t easily get the attention of my husband and sister, who were downstairs taking care of the baby. Fortunately, they came upstairs to check on me not too long afterwards, but it was fairly distressing to feel that I needed help and couldn’t communicate.

Snuggling Charlie in the Moby wrap

Snuggling Charlie in the Moby wrap

4) Consider “baby wearing.” 

This is more relevant for the later “early days” when you are more mobile. I found that wearing Charlie in a Moby wrap (the benefits of which are explained in detail here by MamaOT) allowed him to feel secure and close to me while also taking strain off my arms and allowing me to complete tasks in a somewhat “hands free” fashion. We’ve gone through some trial and error to find baby carriers that work for Charlie; right now we mostly use the Ergo but also the Pikkolo and sometimes Moby (but he’s getting pretty big for it now!).

Psychological Tip: Be Gentle on Yourself & Find Support

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Precious bonding moments at around 3 months, as we eased out of “survival mode” and Charlie became more interactive.

Contrary to Maslow’s Hierarchy of Needs, I believe that even when your basic physiological needs (food and sleep) are not adequately covered, you still have a desire for higher social and emotional needs to be met. You will likely have lots of hopes and dreams about parenthood, and many of them may come trueat some point, but probably not in the first few weeks home with an infant. The newborn stage is difficult for most new parents, regardless of the degree to which they remember it (and despite their beseechings that new parents “enjoy every second!“). Be gentle on yourself during this transition.

When things aren’t going as you hoped/planned, “let it go” as much as possible (like most people in America, I’ve had this song in my head for most of Charlie’s life). Baby just peed on you and himself after you just changed his and your outfit? Let it go.  That strategy you just figured out to get baby to sleep that worked for 4 days straight suddenly doesn’t’ work anymore? Let it go. Baby spit up all over them and yourself right after you gave them a bath? Let it go.  It’s just babies being babies.

My little love, at 3 months (right after the "fourth trimester," when we started getting more sleep and feeling better overall).

My little love, at 3 months (right after the “fourth trimester,” when we started getting more sleep and feeling better overall).

It helped me to think of the first 3 months postpartum as the “fourth trimester” (as argued by Gary Karp in the “Happiest Baby on the Block”). The baby developmentally still wants to be in the womb in many ways and will not be as interactive or responsive initially as they will be by around 12 weeks (or earlier!). Try to be as patient as possible and perhaps lower your expectations for the early days. Many new parents refer to the first couple months as “survival mode,” a concept I found useful.

I would also recommend finding some sort of structured social support, either in person or via social media. Here are some options:

  • Your local hospital and/or community college will likely offer “parent-baby” education and support groups. Evergreen Hospital in Kirkland (where I delivered) has a series of parent-baby groups and the 0-3 month ones are all free.  They also have standalone classes on topics such as the  postpartum psychological adjustment. Honestly, it was very therapeutic for me to just sit in a room full of other parents going through similar stages!
  • pepsIf you live in Seattle, the PEPS – Program for Early Parent Support is a great source of in person support. Parents who live near each other and delivered around the same are grouped together and more experienced parents lead the groups and mentor them through the new baby stage.
  • I also enjoyed being part of social media groups (many of which are private). There are many general mom or parenting groups as well as groups specific to different topics such as breastfeeding, formula feeding, and different parenting styles or approaches.

Concluding thoughts about taking care of yourself

Grandma Cee, one of our many helpers in the early days.

Grandma Cee, one of our many helpers in the early days.

Becoming a parent is a gift that is awe-inspiring in a global sense yet frequently messy/complicated during one’s minute-by-minute lived reality. I mention challenges such as sleep deprivation and pain not to dwell on them, but to provide ways to navigate them so you will be better poised to appreciate the gifts of the early days.

The pressure on modern American mothers to “have it all” has been exhaustingly well documented elsewhere, so I will simply just suggest that you not attempt to do it all, immediately after having a baby. Get help, or if nothing else, prepare for how you will take care of yourself alongside the baby in the early days.

I hope these tips are helpful and would love to hear more from you in the comments section!

*I recognize that new parenthood takes many shapes and forms, from adoption to single motherhood to a same sex married couple to my situation. I have focused on tips for my situation (heterosexual married couple, biological parents) because it’s the only one I know and can speak to. 

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Arthritis Gadgets/Approaches that Help During Pregnancy and Pregnancy Gadgets/Approaches that Help for Arthritis

Throughout the last 9 months of my pregnancy, I’ve been pleasantly surprised to note that many of the gadgets and approaches that are recommended for arthritis can also be helpful for pregnant women. Conveniently, many of the strategies and gadgets recommended for pregnant women can also help persons with arthritis! I’d like to share some of my favorite items and approaches so that others with arthritis or pregnancy can discover how to protect their bodies and perhaps be more comfortable.

Arthritis Gadgets and Approaches that also Help During Pregnancy

1)      The Reacher / Grabber

Using the reacher to pick up a cat toy!

At 9 1/2 months pregnant, I enjoy using the reacher to pick up a variety of household items, such as cat toys!

The reacher/grabber is a classic gadget that helps you avoid bending down to pick up items. As a bonus, reachers can also help you reach high up items (which I personally have found helpful when picking blackberries – the good ones are always just out of arm’s reach!).

There are 2 basic kinds of reachers: the lightweight variety, which are very easy to operate if you have hand pain but only work for light items, and heavy duty ones which can pick up items up to 8 pounds.

I have found that reachers are a great creative baby shower present for the expecting mom. Their usefulness will likely persist post-delivery, as it can be difficult to bend down if you are still healing (particularly from a Cesarean birth).

2)      Clothing Aides

Putting on and taking off clothes can be difficult with arthritis as well as pregnancy, especially in the second to third trimesters as the belly grows and bending down becomes harder! The sock aide and shoe horn (links below) are useful for lower body dressing as they minimize the extent to which you have to bend down to put on socks and shoes. The button hook is super helpful if you’re having hand swelling and/or carpal tunnel syndrome, which are common during pregnancy.

3) Supportive Shoes that are Easy to put on

These Dansko boots are very supportive but they do have zippers, which can be a little challenging as your belly grows bigger!

These Dansko boots are very supportive but they do have zippers, which can be a little challenging as your belly grows bigger!

Painful swelling of the feet is a common phenomenon during pregnancy, and those with arthritis know all too well the importance of comfortable and supportive shoes!  Many people with arthritis as well as those who are pregnant find that easy to put on shoes (such as slip ons) are super helpful, as they prevent you from having to bend down and allow you to avoid potential hand pain from finagling with laces/snaps/etc.

My favorite shoes for arthritis and pregnancy have hit the sweet spot of “support + ease of putting on and off.” Most of the shoes I recommended in my previous post on this topic work well for both arthritis and pregnancy. For pregnant women, I would recommend adding a zipper pull to boot zippers to minimize the bending needed to reach them. Alternately, I recommend sitting down and crossing one foot over the other knee in order to more easily put on boots or shoes that might be supportive but difficult to put on and off.

4)      Fatigue Management and Energy Conservation

Since fatigue is also a part of many of the autoimmune-caused arthritic diseases , persons with arthritis often learn coping strategies for fatigue such as getting adequate rest, pacing oneself and asking for help. Fatigue is also a common phenomenon during pregnancy, particularly in the first and third trimesters, so many of the same strategies that work for autoimmune-caused arthritis also apply to pregnant women.

I have learned to manage and prevent fatigue by implementing “energy conservation” strategies.  Energy conservation most simply means looking at ways to organize your environment or tasks so that you need to expend less energy to achieve the same goals. Occupational therapists tend to have great recommendations for energy conservation, and I would also recommend this great list of strategies from Arthritis Self Management.

A few energy conservation techniques I’ve implemented since becoming pregnant include:

  • I now keep the cat food on the counter rather than in a lower down cabinet - it's not as pretty, but it minimizes the amount of bending I have to do.

    I now keep the cat food on the counter rather than in a lower down cabinet to minimize bending.

    Reorganizing my kitchen so that frequently used items (such as cat food) are at arm’s level rather than super high up or low down (see photo). I also put frequently used items at arm’s level within my refrigerator and freezer.

  • Putting frequently used items on my bathroom counter rather than storing them under the sink to prevent excessive bending down (which helps with back as well as knee pain)
  • Purchasing items via Amazon.com rather than going to the store, which minimizes the amount of lifting and carrying required
  • Have your groceries divided into more bags to minimize the weight of any one individual bag
  • Using adaptive equipment (such as the reacher mentioned above)
  • Asking for help (more on that below!)
  • Planning ahead so that I minimize the amount of trips required to perform a task
  • Listening to my body and taking frequent rest breaks when needed!

Pregnancy Gadgets and Approaches that Also Help with Arthritis

1)      Clothing that is Loose, Comfortable and Easy to put on and off

“Demi Panel” pants are easy to put on and off AND comfortable…double whammy! Click here for the pants pictured above.

The maternity industry has absolutely nailed this one!  I have really enjoyed my elastic or panel waisted pants during pregnancy; not only are they more comfortable than standard pants, they are much easier to put on and off due to the lack of zippers, buttons and other tricky closures!

I see no reason why regular folks with arthritis wouldn’t benefit from/enjoy wearing the kinds of elastic waist pants that are designed for early pregnancy (the “full panel” ones designed for later pregnancy only really work for the shape of your body at that point).  The terms to search for would be “low rise maternity pants,” or “demi-panel” pants. I personally have enjoyed my Old Navy demi-panel pants as well as their fold over lounge pants.

I will say that the brands vary in terms of how much force is required to pull the pants up over the hips; I would recommend getting a panel with a little more “give” so that you don’t have to excessively grip the panel in order to pull it up, as this can cause additional strain to the hand joints.

Additionally, I’ve found that many maternity tops  are super soft, loose, comfortable, and easy to put on and off. These are also great criteria to value while shopping for arthritis-friendly tops, as the easier your clothes are to put on and off, the less strain you’ll be putting on your precious joints!

2)      Pillows and “Positioning Aides” for Comfort while Sleeping

My plethora of different sized pillows allows me to sleep comfortably...most of the time!

My plethora of different sized pillows allows me to sleep comfortably…most of the time!

One of the many pregnancy pillows available on the market.

Sleep is so crucial for maintaining overall health during pregnancy as well as while managing arthritis.  I was super excited to learn about all the different pregnancy pillows and other “positioning aides” on the market.  While I personally have been able to sleep relatively comfortably by arranging my existing pillows on my bed, many pregnant women find that the special pillows designed for pregnancy are a great investment that substantially improves their ability to sleep comfortably.

Many folks with arthritis would also benefit from these larger, full body pillows as they provide additional support that minimizes the strain on your joints. For example, the pillow pictured at top right supports the woman’s left shoulder and hip much more so than if she was sleeping on a standard pillow. This article offers additional tips for sleeping positions that help with a variety of physical ailments. If the comfort isn’t motivation enough, just consider that you spend roughly 1/3 of your life sleeping, so anything you to do protect your joints during sleep will potentially have a huge effect on your joints!

3)      Asking for Help

My husband Gabe is my #1 helper!

My husband Gabe is my #1 helper!

This is a biggie.  I have found it so much easier to ask for help during my pregnancy than I previously had on the basis of arthritis. At some point, pregnancy becomes such an obvious, public phenomenon that people will offer help before you even have a chance to ask. It’s also been easier for me to ask for help while pregnant because I see it not only as for myself, but also for the baby.

I’m not proud to admit it, but I definitely have had my impatient moments in the past where I knew I should ask for help (for example, with heavy groceries) but didn’t because I wanted to just get the task done quickly.  The added incentive to protect the child in addition to my own joints has made it much easier for me to ask for help during pregnancy, and I really hope that I can remain in the habit of asking for help post-partum.  As an occupational therapist, I know how important it is to protect my joints, but as anyone who’s worked in health promotion knows, there is often a gap between knowing what’s right/what to do and remembering to consistently enact that in the moment!

The gadgets and approaches listed above were the most salient to me during my pregnancy, but I’m sure I’ve only skimmed the surface of the overlap between helpful strategies for arthritis and pregnancy. I’d love to hear additional ideas from others in the comments section!

Posted in baby, Occupational Therapy, Rheumatoid Arthritis | Tagged , , | 2 Comments

Everything I Need to Know About Grit, Perseverance and Frustration, I learned from Soccer

Expecting our first child has led us to reflect on what has shaped our character over the years.

Expecting our first child has led us to reflect on what has shaped our character over the years.

Soccer is one of the most frustrating sports, which is why my husband and I hope our kids choose to play someday. You might wonder: why on earth would a prospective parent actively desire that their child experience frustration?  My reasoning is simple: frustration is an unavoidable part of life. By being chronically exposed to frustrating situations and learning to persevere through them, you develop grit and perseverance, which will be more beneficial long term than being sheltered from negative experiences.

Additionally, recent research suggests that grit and perseverance are more correlated to lifelong success than traditional measures such as IQ or grade point average.

Of course, all sports help children develop important life skills and require some level of perseverance and frustration tolerance.  So, why soccer over other sports or athletic endeavors? Soccer has some unique characteristics which I think make it the perfect sport for developing grit, frustration tolerance and perseverance.

1. Many times, the outcome of the game does not reflect the reality of which team is better. Lesson: Life is not fair. Result: Increased frustration tolerance.

Soccer is a 90 minute game in which the outcome is decided in mere seconds. One team could have possession of the ball for 80 minutes of the game and shoot 20 times without scoring, while the opponent could have one shot on goal which makes it in, leaving them the winners. This is in stark contrast to sports with a high frequency of scoring opportunities such as basketball, where the outcome far more often reflects which team is objectively better.

Ready to surmount some frustrating experiences on the field!

Now that my shorts can’t possibly get any higher, I’m ready to surmount some frustrating experiences on the field!

Looked at in this light, it seems one would have to be insane to put one’s heart or hopes into the outcome of a soccer match, knowing that the result can easily be random or unrelated to which team is objectively better.  However, it is precisely this relationship to randomness that makes soccer such a fine preparation for life. By providing chronic exposure to results that feel frustratingly unfair, soccer teaches the player that life outcomes are not always decided by what or who is best overall, but by specific high-impact moments.

Young children (particularly middle children such as myself) often hear the phrase “life’s not fair,” but we all know that experience is the best teacher.  There is a particular type of frustration that comes when what should happen (the better team should win) contrasts with what does happen (sometimes, the worse team wins).  In our daily lives, most of us tend to be fooled by randomness; we want to believe that outcomes are dictated by what or who is most logically deserving of success, because accepting the role of randomness in our lives is scary and makes us feel out of control.

However, our lives will inevitably present situations where what should and does happen simply don’t match, and we need to learn to persevere through these events rather than crumbling under the unfairness of it all.  Learning to accept and move past these unfair situations leads one to develop frustration tolerance, or the ability to proceed with our endeavor despite an unwelcome (and thus frustrating) outcome.

Now, let me be clear: the point isn’t that everything is random in soccer and life. The point is that soccer seems to hit that same sweet spot that life does, where the outcome usually but not always reflects who is most deserving of a win.

My husband and I both grew up playing soccer, which I think has affected our outlook on life.

My husband and I both grew up playing soccer, which I think has affected our shared sense of grit and determination.

This may be depressing to some, who prefer sports such as swimming and track and field where outcomes are clearly more objective and the “best person wins.” However, I believe that this lack of predictability is where the magic of soccer (and life) truly lies. When two teams line up at the beginning of that 90 minute match, they both know that no matter what their past record, no matter how many star players each team has, anything can happen. The team with the losing record knows that if they play their cards just right and have luck (randomness?) on their side, they can eek out a win, and the team with the winning record knows that their past performance provides no certain assurance of a win today.  Learning to dig your heels in and conceive of the possibility of a win, no matter how remote, is another crucial life skill (along with frustration tolerance) that I hope my children develop!

2) There will be forces completely out of your control (such as the referee’s decisions), and it is useless to expend energy fighting them. Lesson: control the controllable and accept the rest.

I’ve prepared a handy list of things you can and can’t control on the soccer field, and their correlates in “real life.”

  Soccer: “Real Life:”
What you can control:          Your response to the referee and their decisions Your response to your boss, DMV employees, and anyone who has concrete power over you
Your response to the other team Your response to your “enemies,” competitors, etc
Your preparation prior to the game Your own efforts to best position yourself to obtain your desired outcome
Your conduct on the field How you conduct yourself in life.
What you can’t control: Referee and their decisions Boss, DMV employee, and other people in power’s decisions*
Behavior of the other team Behavior of your “enemies” or competitors
The preparation of your teammates* The efforts of those around you to position your team/group to obtain the best outcome
Your teammates’ conduct on the field* Behavior of those you must work with in life (spouse, coworkers, etc)

*These are partial gray areas, but you get the point.

I will admit that this lesson is also learned in other team sports. However, taken in the context of section 1, I hope the reader can see that actions by those in power such as the referee have an enormous impact on the game, as every scoring opportunity has the crucial potential to directly affect the outcome (again, unlike basketball, where one foul likely will not determine the end result).

Knowing what you can and can’t control has been crucial for my mental health. Just as I learned through soccer that I will never convince a referee to rescind a call that I feel is wrong, I have learned to differentiate between when I can and cannot have an impact on my circumstances. By knowing when I cannot change an outcome, I avoid expending my precious energy on futile endeavors. Furthermore, I learned that the best response to a “bad call” was to immediately refocus my attention and energy to the reality of the moment and determine what I could do to make the situation better.

I LOVE reading now, but one of my first memories of frustration is from learning how to read. It was hard!

I LOVE reading now, but one of my first memories of frustration is from learning how to read. It was hard! Luckily, I had patient teachers such as grandma, pictured here.

An old coach once told me that that when he evaluates players during try-outs, he doesn’t look just at how many mistakes they make, he looks at their first reaction after a misstep.  When you fall, is your first reaction to wallow or hit the ground in frustration, or is it to jump back up and do whatever you can do remedy the situation?  Training yourself to dig your heels in and refocus your attention the task at hand despite an unfair or frustrating situation is a crucial element of grit and has benefits far beyond the soccer field.

To make things complicated, there are gray areas which I’ve marked with an asterisk above. For example, I may not like an institutional decision or a particular government program.  Is this controllable or not? Of course, there are times when you can exert some power to influence or change decisions that in the past have caused frustration. In soccer, one can talk with the coach and perhaps help change his or her mind as to the starting line-up, or in life one can advocate for a change in a government policy. The trick is to learn when you have some wiggle room to exert influence and when you simply don’t, and I think sports like soccer are a great vehicle for learning this distinction.

3) Soccer can help one develop intrinsic versus extrinsic motivation. Lesson: my happiness can lie not in the outcome of the game but in my evaluation of my own effort and performance. 

Basically, since the outcome of the game (in terms of who “won”) doesn’t always reflect who actually played better, the soccer player over time learns to evaluate their performance based not just on whether they won but by also on how well they played (individually and as a team).  Thus through time, the soccer player learns to be motivated not just by “wins” but also by evaluating their effort and performance.

We didn't have the best record my freshman year at Vassar but we ended up pushing through and winning our conference championship!

We didn’t have the best record my freshman year at Vassar but we ended up pushing through and winning our conference championship!

Through soccer, I learned to be satisfied at the end of a 90 minute match by reflecting on great plays that I made, regardless of whether or not my team won the match. I’ve found myself approaching other tasks in my life in a similar way. For example, I may not receive the grade I was aiming for in an exam, but I can be proud of answering a tough problem or conquering a difficult concept along the way.

On a somewhat related note, recent research in the area of self-perceived intelligence and praise has provided support for focusing on effort versus intrinsic ability. Just as kids who are praised for effort tend to exhibit more task persistence than those who are praised for innate intelligence, I believe that kids who learn to focus on evaluating their own effort during a soccer game rather than the outcome will similarly experience increased task persistence.

Interesting anecdote: I recently asked one of my students to write out their strengths and areas for improvement and to provide examples or reasons for each.  I asked the child why they listed a particular subject as a strength, and they answered “because I get the highest grades in it.” I attempted many follow-up questions to prompt them to consider why they receive better grades in this subject (is it because they work hard? Does it come easily to them? Do they persist when things get difficult?) but they were unable to correlate their performance with any action they had taken. They were only able to evaluate their strength based on external ratings (grades).

We may have lost the game, but I trapped that ball with style! :P

We may have lost the game, but I trapped that ball with style! :P

I know that children go through a cognitive evolution from thinking very concretely to being able to think more abstractly/flexibly, which might explain this child’s lack of insight at the moment. However, my hunch is that sports such as soccer help kids develop a more nuanced ability to evaluate their performance by forcing them to separate effort from outcomes. The soccer player knows in their heart when they had a win that they didn’t deserve, versus one they truly earned. They learn that the win-loss record doesn’t tell the whole story, which I think is a very useful skill for mental health and insight later on.

Conclusion

Many factors influence whether one will develop grit, perseverance and frustration tolerance over the course of one’s life, and soccer of course is just one of many possible vehicles for developing these vital life skills.

Getting ready for baby!

Getting ready for baby!

As I’ve prepared for our baby to come over the last 7 1/2 months, I’ve read countless parenting books and memoirs.  Pamela Druckerman’s “Bringing up Bebe” emerged quickly as one of my favorites.  In exploring the difference between French and American parenting styles, Druckerman explains: “French parents don’t worry that they’re going to damage their kids by frustrating them. To the contrary, they think their kids will be damaged if they can’t cope with frustration. They also treat coping with frustration as a core life skill. Their kids simply have to learn it. The parents would be remiss if they didn’t teach it.”

I know it will be unintuitive for me to allow our child to be frustrated when I might have a solution, but I hope I can remember my experiences with soccer and hold back so that our child learns to persevere despite inevitable frustrating setbacks.

I’d love to hear from readers about what life experiences have helped shape their ability to persevere through frustration and develop grit – let me know in the comments section!

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10 Years with Rheumatoid Arthritis: What’s the Impact?

Belize 2005

Volunteering in Belize 2 years post-diagnosis (2005).

China 2013

Great Wall of China, 2013 (10 years post-diagnosis).

I recently realized that I have lived with rheumatoid arthritis (RA) for ten years, or roughly a third of my life!  In that time I’ve graduated college, travelled to 12 different countries, lived in 3 states and travelled to/through over 15,  started swing dancing, got 2 kittens, earned a Masters degree in occupational therapy, got married, bought a house, and more.

In honor of my diagnosis anniversary, I’d like to share how RA has (and hasn’t) affected my life over the last 10 years.

Understandably, most people assume that joint inflammation and/or pain has the biggest impact on the life of someone with RA. However, if I really look at how my life has changed due to my diagnosis, the impact extends far beyond the physical. Using the Occupational Therapy Practice Framework as a general guide, I’ve created a handy pie chart which shows the 7 areas of my life that have been most affected by RA. I will explore each in detail below, starting with the top right.

chart3

1)      Physical Effects of RA:

For those who don’t know, RA is an autoimmune disease. In RA, your immune system mistakenly attacks the lining of your joints, which has a cascade of effects beyond joint inflammation (“arthritis”), pain and degradation. Although arthritis is in the name because joint inflammation is a main effect, RA is in fact more similar to lupus than osteoarthritis, which is caused by joint cartilage breakdown over time. RA has “systemic” effects on other organs, such as the heart, lungs, and vascular system (explored in detail at the link above and here).

2 Good Day

On good days, I feel like THIS!

So, what has that meant in my life? Well, my levels pain, inflammation and fatigue have varied vastly over the last 10 years. I’ve had years at a time with absolutely no symptoms (“medicated remission”), but I’ve also had a couple of “flare-ups,” where pain and inflammation have increased to the point that I have to change my medication regimen and how I approach tasks.

On a bad day, my foot feels like this.

On a bad day, my foot feels like this.

On the average day, I feel a dull ache in my “distal” joints (farthest away from the core – think fingers and toes, not shoulders and hips) which is slightly worse in the morningand at night. I intermittently have cricoarytenoid arthritis, or inflammation of a small joint in the throat, which results in dyspnea. Dyspnea means difficulty breathing or an “unpleasant awareness of the work of breathing.” Overall, I have been very fortunate to respond well to my medication regimen, which has kept my inflammation at bay.

glasses

I wear glasses to minimize eye inflammation.

Despite my mild level of daily joint inflammation, I do experience some  systemic effects of RA, including chronic eye inflammation, gum inflammation (leading to hefty dental bills), non-iron responsive anemia, occasional fatigue, and some gastrointestinal symptoms that may or may not be related to RA depending on whom you ask. The gastrointestinal issues have led me to adopt a nightshade and gluten free diet.

I also experience medication side effects, including increased risk of infection (which means I must be very careful to wash my hands and practice other “infection control” measures), digestive issues, and fatigue.

In summary: while I’m very lucky to respond well to medication, my life has been affected by the direct and systemic effects of this disease and medication side effects. The hardest aspect for me is not managing my physical symptoms but rather the unknown. If I’m currently in mild pain, next week will I have a huge flare-up, or will I be in medicated remission for the next 10 years? No one can answer that, which makes life planning difficult. Then again, we all ultimately don’t possess answers regarding our physical future…but more on that later.

2)      Daily Routine: The Why, and the How.

My physicians prefer my RA be controlled 100% through medication, which would allow me to live a completely “normal” life without making any modifications. However, as an occupational therapist I prefer to tweak my daily activities so as to minimize stress on my joints.

The way I see it, my joint inflammation at any given moment is partly a result of my immune system attacking my joints, and partly a result of the additional stress I put on them as I engage in daily activities.  Medication addresses the former cause of inflammation, but not the latter.  I can control the way I approach daily activities, so I owe it to myself and my long term joint health to do so! Joint protection has become a part of my daily routine at almost a subconscious level. Here are just a few of the ways I approach activities differently to prevent further joint damage:

CherylGabe

I love boots for comfort and ease of putting them on/off. Photo credit: http://www.rishisanyalphotography.com/

Dressing: I take my RA into account when selecting clothing. Typically I avoid shirts with lots of tiny buttons, as they involve lots of repetitive motions of the small hand joints.  I also am extremely selective with my footwear, with the dual goals of minimizing stress on my foot joints and making the shoes easy to put on and take off (see my previous post on RA-friendly shoes, where you will discover my obsession with Danskos!).

iphone pics june2013 002

Stovetop cookies…these are actually less efficient than baking cookies in the oven, but this is the best “kitchen action shot” I could find :-)

Cooking:  A few simple kitchen modifications I’ve employed include: using an electric can opener rather than manual, using a smaller Brita water pitcher rather than a larger/heavier one, purchasing very good/sharp knives to miminize the amount of force I must use to cut things, using an electronic food processor and kitchen aid rather than manually stirring food,  using “mass movements” (shoulder/elbow/trunk) to open items rather than relying on the small hand/wrist joints whenever possible, and asking for help with lifting large/heavy items. When I am lifting any object in the kitchen, I follow the basic rules of joint protection.

       Computer/phone useI take frequent stretch breaks at the computer, and I always use a mouse rather than a trackpad because mousing puts less stress on my MCP joints (knuckles) than using the trackpad (and the MCP joints tend to be most affected long term by RA). I’ve also started using talk-to-text programs when I’m not in public, such as Siri. I find it’s much easier to dictate a short message this way, plus it’s way faster than trying to finagle with the small keyboard on the iPhone!   

3)      Financial and Health Management Adventures with RA

Health management and financial costs affect everyone with chronic illness, regardless of whether one is experiencing symptoms at the moment.  I’m sharing these costs (financial and time burdens) not to complain, but just to paint a realistic picture of what managing this disease entails.  RA appears to cost me 26.8 to 74 hours of time per year, and $2800-$8000 per year depending on my insurance (note: the financial costs are just what I directly pay; my insurance company is paying over $20,000 a year for Enbrel or Remicaide alone).

time money costs chart2

4)      Social & Emotional Effects of RA:

6 wedding

My wedding!

As marriage became more of a real prospect in my mid to late 20s, I found that anyone entering into a romantic relationship with me would consider the potential lifelong effects of the disease.  My impression is that the disease itself was seen as a negative, but the way I managed it was seen as a positive.  I also think I self-selected partners who shared my view, which is that you never know what physical or mental condition someone might develop when you make that lifelong commitment. We all know that we could be hit by a car tomorrow and our whole lives could change, so putting extra stock in the physical when making romantic relationship decisions is unwise.  That being said, I think that when you enter into marriage after having experienced health issues, the phrase, “In sickness and in health” certainly carries more weight. In fact, the only time I became tearful during my wedding ceremony was when saying those words!

Regarding family and friend relationships, I’ve had wonderful support from both groups. The only small point of friction has been when I have felt peer pressured to stay up late, over-exert myself and not give my body the rest it needs. My peer group largely has subscribed to the “I’ll sleep when I’m dead” approach, which simply doesn’t work for me (or most people with an autoimmune disease). My body starts shutting down when I get less than 8 hours consistently a night. I’ve learned to be assertive with this, and deal with “FOMO,” or “Fear Of Missing Out.”

CIMG2702

KAT-FISH camp for kids with arthritis, 2010 (I selected a photo w/o kids’ faces to protect their privacy).

On the positive side, RA has paved the way for me to make some additional friendships and relationships.  I’ve met other patients through the Arthritis Foundation, at the summer camp in the northwest as well as other volunteer and advocacy adventures. I’ve also met some amazing folks through social media and blogs, such as RA Chicks, RA Warrior, Creaky Joints, and RA Guy.  Lastly, I’ve recently made connections through Tumblr with some inspirational people through Arthritis Humor.

Emotionally, the hardest times for me have been when I’ve had unexplained symptoms. This happened the full 2 years before I got diagnosed and has reoccurred a few times since then. As someone who prides herself at the ability to get to the heart of the matter, I’ve found it frustrating when I can’t figure out what is causing a particular symptom and how/when it will go away. I also have felt anxiety about the future, due to not knowing how RA will affect important life roles that I hope to have such as being a mother someday. Will I, like some women with RA, go into complete remission during pregnancy but then have a huge flare-up after giving birth and barely be able to hold my own baby? Or will I go into lifelong remission after having a child, like my great aunt did?

The unknown for me is probably the very hardest aspect of this disease. If I knew that I’d have X effect for life, I could habituate my mind and approach to it, but unlike a situation such as a complete spinal cord injury where the prognosis is pretty clear cut, autoimmune diseases have varying courses for each individual. The upside is that I have the potential to feel great in the future, but the downside is that I will always have to handle the unknown and lack of clarity on what is happening in my body.

5)      School & Career w/RA: 

I always enjoyed working with kids!

I always enjoyed working with kids! Pictured here is my sweet nephew Sammy.

During the first 6 years of my diagnosis I explored some truly amazing careers, including: working in a private school for children with severe developmental disabilities, program development at an international photography and youth storytelling nonprofit, and organizational development and training at a top 10 academic medical center in Seattle.

During that time, I did a ton of soul searching about what career would be the best fit for me long term, and RA did play a role in my decision making. I decided I wanted a career where my primary purpose was directly helping people (individually or in small groups). The career had to be flexible enough that I could work in a variety of settings, regardless of my potential joint inflammation.

OT

OT annual conference – meeting up with another OT with RA!

Occupational therapy emerged as the perfect fit due to the large scope of practice and variety of practice settings. It also has a lot of part time work availability, which appealed to me as I’m hoping to work part time when I have kids. Additionally, OT is an intrinsically optimistic profession. We will rehabilitate or compensate for any physical or mental condition so that our clients can “life life to it’s fullest.”  OTs want to maximize the amount of function one can achieve despite any illness or injury, and that philosophy appealed to me as it’s very inclusive of a diagnosis such as RA.

As an OT student, I did experience some occasional pain from handwriting. However, my vast experience with the health system and my own journey as a patient generally have a positive effect on my school and career.

One positive effect of my diagnosis on my career is that I can empathize with my clients’ interest in knowing “the answers,” and their frustration when they eventually discover that no one knows them.  People can tell you what is most likely to happen, but no one in the health or education system is a fortune-teller. I really identify with my clients’ (or family’s) frustrations over how difficult it is to make decisions off of what sometimes feels like incomplete information. Once you understand how complex the human body is, it seems self-evident that no one can give you the answers, but I vividly remember my experience of the healthcare system before I became a provider, and the profound disappointment I felt when I was confronted with this reality. I try to really acknowledge this aspect of my clients’ experiences and validate their concerns.

6)      Hobbies & Travel with RA:

My choice of hobbies has certainly been affected by my diagnosis.  I used to run almost every day, starting in high school through to a couple years after my diagnosis, but eventually decided to try forms of exercise that would be less strenuous on my joints: swing dancing!

10

Swing dancing with my first partner, Brian Gish!

In my video “Why I Dance,” I shared how dancing grew into a huge part of my social life.  I have to be careful about certain moves which cause strain on my small hand joints, but overall I’m fortunate to be able to take part in this wonderful community despite RA.

Swing dancing is a great example of how RA took something away from me, but I discovered something equally meaningful in its place. Do I miss running and soccer? Absolutely, especially on clear, beautiful Seattle days. On a purely physical basis, I prefer the endorphin release of soccer or running to swing. However, when I look at the whole package of the activity (with the social and musical elements), the trade-off is without a doubt worth it.

Now, onto travel. Yes, I have been to 14 countries since my diagnosis: Belize, Fiji, New Zealand, Japan, China, India, Turkey, Czech Republic, Germany, Belgium, Netherlands, Ireland, England, and Canada. Phew!

5

Mom delivering my Enbrel in San Ignacio, Belize!

The biggest effects of RA on my travelling are the prescription and health management aspects. My first international trip post-diagnosis was to Belize, where I volunteered for a great organization called Cornerstone Foundation. I was only planning on staying for 3 weeks but I ended up staying 3 months, which meant that I needed additional medicine. I was on Enbrel at the time, a twice-weekly self-injection medicine which MUST stay refrigerated. My mom graciously helped me research how to ship it, but found out that it is illegal to ship things on dry ice to Belize due to drug concerns. So, guess what our solution was? My mom took advantage of low ticket prices and decided to bring the medication to me – now, that’s what I call customer service!

The drama wasn’t over at that point, however – during my last 2 weeks in Belize, there was a strike by the electrical supplier to the entire region, so we had no electricity to run the refrigerator! Luckily I was able to keep my medication cold, but it just goes to show some of the difficulty of travelling with RA.

new zealand

New Zealand for our honeymoon, 2012.

During my other travels, I sometimes had to simply skip a week or two of medication. I was lucky not to experience any adverse affects with this approach. I also had to get “vacation authorization” to pre-fill extra amounts of my medications for longer trips.

Since I switched to Remicaide, the infusion-based medication which is administered every 6-8 weeks, the biggest travel concern has been coordinating my travel dates so that they do not conflict with  my medication schedule. For example, I had to get an infusion the week before my wedding so that I would be covered through the honeymoon.  This has also affected my current travels to China, as my husband is there on an extended business trip.  Luckily, my infusion schedule overlapped with a few weddings I wanted to return home for anyway!  I think that spending extended time abroad would be anxiety-provoking to me, from a medical standpoint, because I have found that errors or confusion are more likely each time you introduce a new provider to the mix. However, short trips for me have been manageable with some work upfront.

7) Philosophical Effects of RA: The Biggie.

cher_soccer_mihs_1997

1997, Mercer Island High School. I’m trying to save the ball from going out of bounds.

For years, I believed that if I treated my body as a temple, I would reap the rewards of my efforts. I ate well, avoided recreational drugs, exercised vigorously daily, and as a result had a body that operated smoothly and efficiently. I ran a 5:30 mile, weight lifted 5x/week, and never subbed out of my high school or college soccer games (clocking in 90 mins/game).

Experiencing my body break down in the absence of anything I was willfully doing felt like a double betrayal: it was a betrayal of myself BY myself (there wasn’t even an outside virus to blame!), and it was a betrayal of a philosophical system I didn’t know I had, which is that I can protect my body from harm by doing “the right things.”

I know now that my years of good health were partly a result of my actions, but also a result of good luck.  My baseline state of good health enabled me to maximize my fitness and do great things, but I wasn’t in control of that original baseline state. In my gut, I suppose I knew that I was lucky to be in good health; I had seen other athletes fall victim to injuries and seen friends/family fall ill to various diseases through no fault of their own.  There is a transition period, however, between knowing your body is not invincible and accepting it.

IMG_1033

The world is big and awesome and the only thing I know is that I’m going to die, so I might as well do as much good as I can while I’m here! Whee!

So, what or who is to blame when the body betrays the body? In my own belief system, there was is no god or greater power or force to blame or help make sense of it. There isn’t a “reason” or meaning to my diagnosis; it just is. All humans are mortal, and all human bodies are subject to disease and illness. There are certainly preventative measures we can take to minimize risk, but there are no surefire ways to prevent yourself from all possible illnesses and injuries.

My diagnosis led me to confront the infallibility of my own body, which in turn made me confront my own mortality. The realization that “my physical body is not completely under my control” naturally led to “my physical body will eventually not work anymore.”  Accepting my mortality has been crucial for giving me a strengthened sense of purpose and urgent desire to make a meaningful life. The graph below outlines the interplay of these factors.

philosophy chart 2

How various factors (including RA) lead to recognition of my mortality, which lends a sense of urgency to my life.

The fact that I am going to die someday gives immediate perspective to any situation. My “bible” of sorts is a combination of “Man’s Search for Meaning” and “Tuesdays with Morrie.”  Both of these books deal with the concept of death straight on, and while Morrie is religious, the basic truths he utters are equally applicable to agnostics and atheists.

“Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die, it’s the positive that you understand you’re going to die, and that you live a better life because of it.” -Morrie Schwartz, in Mitch Albom’s “Tuesdays with Morrie.”

Working with Tibetan refugee children in northern India.

Working with Tibetan refugee children in northern India at “TCV: Tibetan Children’s Village,” 2007.

Confronting my mortality and the mortality of all humans has been the compass around which I live my life and make decisions. It’s the only thing I know for sure. I am alive now, I will die someday, and I desperately want to leave something positive for the world behind, to make my life worthwhile. There is no inherent meaning to my life, the only meaning comes from the good (or bad) actions I choose to take during my limited time on earth.

Sure, I knew I was going to die on some abstract level before I got diagnosed with RA. But there is something about a stark, black and white diagnosis that  makes the abstract concept of mortality more real.  This is perhaps the greatest gift that has arisen out of my diagnosis.

Conclusion

In conclusion: the effects of RA have extended far, far beyond the physical in my life. My diagnosis affects everything from micro-elements of my life (such as how I approach simple daily living tasks in the kitchen) to macro-elements (such as my sense of purpose and acceptance of my mortality).  I hope that this exploration has helped the reader see RA as much more than simply autoimmune-caused “joint inflammation!” I’d love to see charts of other peoples’ top life effects of RA – feel free to share your experiences in the comments section.

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Arthritis Humor and the Therapeutic Powers of Laughter and Social Media

Last week I started a GIF and photo-based Tumblr blog called “Arthritis Humor.  My goal for this blog is to help patients with autoimmune arthritis (and other chronic illnesses) transcend their experiences via humor, and feel less alone by connecting to others through shared laughter.

What’s so funny about arthritis, you ask?  Well, as a healthcare professional and patient, I will concede that there is nothing intrinsically funny about either category of arthritis: osteoarthritis (“wear and tear” arthritis, the kind associated with aging) or  autoimmune arthritis forms such as rheumatoid arthritis (whereby one’s own immune system mistakenly attacks the lining of one’s joints and other body systems as well).

However, as a patient with rheumatoid arthritis (RA), I believe that finding humor in some of my RA-related experiences brings a sense of power over the disease. Furthermore, sharing humorous elements allows me to feel less alone in my journey, as I connect with other patients and see that they have had similar experiences.

I received the following reaction from a friend with rheumatoid arthritis, which highlights these two benefits: “I started laughing, which I find is important to do, but hard at times when you live with a disease that isn’t so funny. It put a smile on my face for sure. There is a lot to be said for knowing someone who just gets it.”

Finding humor isn’t easy when battling a systemic illness. Most peoples’ reactions to pain and the idea of their immune systems attacking them run along the lines of fear, sadness, grief, and even disgust.  I’ve been there myself, make no mistake of it.  For some patients with autoimmune arthritis, the physical pain is so searing and debilitating that it is hard to focus on anything else.

How powerful, then, is a smile or a laugh in the face of those low moments? What great strength there is in moments of transcendence,  moments where we say, “You may have my joints, but you don’t have my attitude, you don’t have my outlook on the situation, not today?”  In that sense, a smile or a laugh becomes more than something light, free and easy; it gains weight, it becomes something substantial, a force to be reckoned with.

Finding humor makes you the victor.

Victor Frankl’s stance on humor during difficult times is particularly relevant here, as he describes the role of humor during his experiences in Nazi concentration camps: “Humor was another of the soul’s weapons in the fight for self-preservation. It is well known that humor, more than anything else in the human make-up, can afford an aloofness and an ability to rise above any situation, even if only for a few seconds.”  Man’s Search for Meaning

It turns out that many researchers have taken a formal look at the healing nature of laughter and humor.  While attending the American Occupational Therapy Association’s annual conference, I discovered The Association for Applied and Therapeutic Humor (see poster below).  Additionally, many  research articles explore and detail the clinical or scientific effects of humor in a healthcare interactions.

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Therapeutic humor poster at 2013 AOTA conference.

While most research focus on the effects of humor on the individual (to release endorphins, for example), or between two individuals in “real time” (such as during a therapy session), I’m interested in how digital and social media enable people to connect through shared humor (and beyond) over vast geographic distances.

Social participation can be so easily limited when one has a chronic illness, yet social media enables people to form substantial connections with very limited energy expenditure.  Through my Tumblr blog, I’ve discovered countless other patients who bond with others through sharing their daily struggles and triumphs over chronic illness. I’m interested in more formally considering the many advantages and drawbacks of patients connecting through social media (from humor and beyond), and I hope to put a poster session together for next year’s national conference.

Do you know of any other ways in which people use humor to transcend illness, or use social media to connect about health issues? Let me know in the comments section!

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How hard is it to learn swing dancing, and how can instructors best meet the unique needs of beginning dancers? Part 2 (of 2).

First of all, thank you all for your responses to Part 1, in which I explored the challenges of learning partner dance from the new student’s perspective.  I was heartened to learn that so many others are passionate about beginning dancers!

In this post, I will share my humble recommendations for the introductory/beginning dance teacher, outlined in the table below. Please note that I am focusing mainly on month-long introductory classes, not necessarily ½-hour “drop-in” classes.

Teaching Recommendations

Recommendation 1: Apply motor learning principles.

Motor learning is the process by which your ability to move in specific ways improves semi-permanently through repetition and practice (colloquially known as “muscle memory”).  The International Association for Dance Medicine and Science has an outstanding overview of motor learning as it applies to teaching dance.

The main point for beginner dance teachers: repetition is essential for movements to be encoded into long term memory.  It can make you itch to give students opportunities to practice skills that seem so simple, but please remember that ample repetition will truly help them solidify what they are learning.

Mark rotates at Century Ballroom

Mark Kihara rotates through the circle while teaching a class at Seattle’s Century Ballroom.

However, mere practice isn’t enough; unless you incorporate feedback, the student risks repeating the same mistakes, which can lead to incorrect motor patterns being encoded into long term memory. Rotating through the circle is the most efficient, effective way a teacher can provide accurate individual and group feedback.  As you rotate, observe common mistakes and provide feedback to the class as a whole so that they can practice their movements more competently.

Additionally, consider alternatives to “forward chaining.”  Forward chaining generally speaking is the technique of getting from point 1 to 2, then to point 3, then point 4, and onwards until you get to the “end” of the movement (typically the 6 or the 8 in a beginning class setting). This is often the default strategy for dance teachers, and indeed it can be very useful. However, it is not the only way to teach movement patterns, and your students may be more successful if you break down a move to its essence.

Hand to hand charleston - still "2 kicks per leg."

Hand to hand Charleston.

Let’s take Charleston as an example. I want to first give credit to the incredible Chris Chapman at Seattle’s HepCat productions for introducing me to this method.  Instead of starting at the 1 and progressing onward, you could begin by explaining that Charleston essentially is “two kicks per leg.” With music on, have students practice kicking forwards and backwards on the beat, then twice with each leg in front and twice behind. After that, practice one kick backwards then forwards with each leg, then one kick forwards and back.  After students get used to the basic rhythm and cadence of the Charleston, explain that the pattern for side by side Charleston is for the “two kicks per leg” to start with the left leg for leads, right for follows, and to proceed as “back and forward, forward and back” for each leg.  Then, explain that the first “back” can be replaced with a rock step, as a variation of a kick.  Demonstrate this by having one teacher do a rock step on the 1-2, and the other do a kick on the 1-2 to help the students visualize that they are interchangeable.

Photo Credit: Kristen Guldner.

Photo Credit: Kristen Guldner Photography.

When you spend time upfront having students experience and practice the essence of a movement, rather than the “right” placement of their feet and legs at the 1 versus the 2 and 3, they learn the general pattern rather than a specific set of rules.  After this pattern is solidified, when they learn a variation (such as hand to hand Charleston), they can layer this specific learning over the general principle rather than having a serial data bank in their brains of “how to do the side by side Charleston,” and “how to do hand to hand Charleston.” This technique actually reduces the students’ cognitive load while also providing repetition of the overall motor pattern.

Additionally, I’m a big advocate of having students practice motor patterns during the warm-up section of class before partnering up.  For example, on the day that you teach  kick through or hand to hand Charleston, have students practice kicking and pivoting in the same manner during your initial class warm-up. This provides repetition while eliminating the lead and follow demands.

Recommendation 2: Address students’ cognitive needs.

Nirav Sanghani & myself teaching a drop in lesson in SF.

Nirav Sanghani & myself teaching a drop in lesson in SF.

Your feedback should be paced for optimal memory retention and to prevent cognitive overload. Teachers are often so bursting with feedback that we unleash a cascade of “pointers” on students after they’ve only had 1 or 2 opportunities to practice.  We think we’re helping, however we get diminishing returns as students become overwhelmed and unable to process our feedback. Here are some concrete recommendations with these principles in mind:

  • Make only one “point” for each role between opportunities to practice.
  • Before each opportunity to practice, remind students what it is they should focus on/do.
  • Before you demonstrate the movements, tell students specifically what to look for to facilitate memory retention.
  • Brian Zimmer and myself teaching in Cali.

    Brian Zimmer and myself teaching in Cali.

    Grade your demands up through time. Start with a basic movement, then increase the complexity of the task. For example, have students practice the movement without footwork first and add footwork later. This allows them cognitive freedom to focus on the shape and lead/follow before adding another demand.

  • Provide alternative memory strategies to “1, 2, 3&4, 5, 6, 7&8.” Some students do super well with numbers. Others will fare better with a word-based memory strategy such as “Step, step, triple-step, step, step, triple-step,” others will prefer “right, left, right-left-right,” and others will do best if you simply scat it out, such as “Bah, bah, dee-bee-dah.” I like to alternate between these (with an understanding that some will be annoyed that I’m not repeating it the same way each time). It’s important to provide the alternatives so the students can select which ones to internalize.

Recommendation 3: Frame struggle as normal / expected.

Smile and encourage!

Smile and encourage!

It’s inevitable: every single student will struggle at some point in the class.  Without guidance from the teacher or other experienced dancers, students don’t know what their struggle means and whether it is normal. Here are some ways you can encourage students:

  • Provide a supportive, safe environment for making mistakes.  Give students a “home base” move to come back to when they have lost the beat, their focus or sense of timing (my personal favorite is just a simple bounce).
  • Explicitly acknowledge that learning dance is hard for everyone. I like to have everyone close their eyes and ask people to raise their hands if they have had a hard time learning at least one move or concept in class so far, then have them open their eyes to see how many others are raising them.  Of course, if very few people raise their hands, it’s a signal to you to amp up the class!
  • Use inspirational quotes or sayings (as deemed appropriate by your own internal cheesiness meter). My favorites include: “Those who don’t make mistakes don’t make much of anything,” and “You wouldn’t worry so much about what other people were thinking about you if you only knew how seldomly they were!” You can also include inspiration on your class websites or handouts. I particularly enjoy this excerpt from Ira Glass: It is only by going through a volume of work that you will close that gap, and your work will be as good as your ambitions.”

    True story: cell phones didn't have cameras on them back then.

    True story: cell phones didn’t have cameras on them back then.

  • Share your own experience of learning; I’ve found that students really respond to concrete details, such as, “I couldn’t find the 1 for my first 2 months of classes!”  I don’t  endorse over-sharing in a class environment, but in this case the personal sharing is in the student’s best interest, as it is meant to motivate and encourage them.
  • Avoid over-use of: “Just have fun.” We all want our students to have fun. However, the phrase “just have fun” can trivialize where students are in the learning process. Would you expect a French or Spanish teacher to tell you after your first class to “just have fun” speaking a totally new language? I think that the “just” in the phrase “just have fun” can backfire and frustrate students even further. It implies that having fun shouldn’t be hard at this point in the process, which for many students is inaccurate.  Don’t get me wrong: I think there are many ways to encourage fun during the learning process – I just don’t believe that saying “just have fun” is one of them.
  • My now husband Gabe (at right) was once my student. I encouraged him a LOT!

    Thanks Losh Lieberman for the pic of myself encouraging my student (and future husband) Gabe!

    Make it personal. Encouragement is often most memorable when it’s specific and personal. Don’t be shy to encourage individuals! It is often very encouraging to students if you can just remember their names. I will never forget the handful of people who encouraged me as a beginner, even if I only danced with them once.

  • Promote an optimistic explanatory style My former post details how you can encourage your students to see their mistakes as temporary and “local” rather than lasting and permanent, which is a more optimistic and rational way to interpret their state.

Recommendation 4: Demand connection and address social needs.

Calico has a beautiful stretchy connection here!

Calico has a beautiful stretchy connection here!

Most beginner dancers undervalue connection, as it does not give as tangible a sense of accomplishment as “doing the move right.”  I prefer to demand connection and a true lead and follow through activities such as “leader’s choice.”  In this exercise, leaders are free to select from a set of formerly taught moves, all of which start the same way. This exercise addresses both roles, as it prevents the followers from knowing the target move.  Beginner followers often pick up on what they are “supposed to do” and enact the “right” movements with complete disregard for what the leader is leading.  When you take away the teacher’s command, the followers truly have to respond to the leader’s signals and leaders get immediate feedback on whether they have actually lead the movement they were attempting.  International dancer/instructor Nathan Bugh has an interesting blog post about this concept in detail.

Theme night at Wednesday Night Hop.

Theme night at Wednesday Night Hop.

The “leader’s choice” exercise also prepares the leader and follower for social dancing. It gives leaders a safe and guided opportunity to practice the difficult skill of selecting which movement to initiate, and t allows followers to practice responding to the leader’s initiation and stopping themselves from anticipating or back-leading.

Additionally, I like to position the introductory class immediately before a social dance and encourage students to stay for a certain number of songs as their “homework.” This proves to students that they can social dance, and also gives them the opportunity to meet other dancers who might provide social motivation to continue participating in the scene.

Faux hawk night at Wednesday Night Hop.

Faux hawk night at Wednesday Night Hop.

Better yet, photo booths, theme nights, non-dance competitions (like a hula hoop contest on a Hawaiian theme night) and class photos are great ways to promote class retention and facilitate social connections between students, especially when photos of the events are shared on Facebook.

Recommendation 5:  Plan ahead and encourage “flow”.

To prepare yourself for the task of teaching beginner dancers, I recommend that you take time to explore some basic principles of teaching and learning, such as the this outline.  I particularly like points #4 and 5 on the teaching principles site.

Flow graph.

I also recommend that you use the concept of “flow” as a guiding principle for your classes.  Flow refers to the psychological state where one’s skills and the challenge of the task are optimally matched. Put simply, you should challenge your students just beyond their current skill level; challenging them too far beyond will produce anxiety, and providing inadequate challenge will lead to boredom.

Regardless of what teaching principles speak to you, I encourage you to spend time upfront planning the following aspects of your classes:

  • Pacing: how much time should you spend on each move/concept?  I generally chunk my classes into 5-10 minute increments.  Even though I end up changing the timing as I respond to the class performance, the practice of chunking the class out helps me plan a sane/appropriate amount of material.
  • That being said: prepare alternatives:  You can never have too many alternative activities and exercises prepared for your students. Particularly in smaller classes where the mean might be skewed one direction or another (such as fast or slow learners), you should be prepared to grade your task up or down (make it harder or easier) depending on how your students perform.

Recommendation 6: Communication. 

Lucy Falkner and Calle J - harmonious as always!

Lucy Falkner and Calle J – harmonious as always!

It goes without saying that one should communicate with one’s teaching partner harmoniously before and during class.  It is pretty obvious to students when teachers are not on the same page, and it can be detrimental if they receive mixed messages from their instructors.

Having said that, direct communication to students is of primary importance.  In the teaching role, you will be communicating the mechanics of the lead and follow and of how certain moves/movements work.  As you plan your class think about not just what you want to say but how you want to say it; how can you most effectively put these movement concepts into words? Often times, metaphors and analogies are most memorable. I’ll never forget when Nina Gilkenson used the phrase “agile momentum robots” to explain the concept of momentum for followers. It was humorous, succinct, memorable, and got the message across effectively!

Specific praise FTW!

Specific praise FTW! Photo credit: Rishi Sanyal

Additionally, I encourage you to address how you frame your communication, particularly praise.  Research has shown that specific rather than general praise has vast implications for task persistence (read: whether students will stick with dancing, even to the end of your 4 week series).  Rather than saying “You’re doing great,” consider specific praise such as, “I like how you rock-stepped on the beat.”

Recommendation 7: Focusing on your students’ actual needs, and the class as the destination.   

Your class is the roller coaster.

Your beginner class is the roller coaster of awesomeness.

As an advanced dancer, you might see a beginning dance class as akin to going to the airport: it’s a necessary step towards getting somewhere awesome, but it is not the awesome place itself.  Here’s the thing, though: for the vast majority of your students, the class is the awesome destination. Their destination is not “long term obsession with a dance form,” at least not yet; their destination is a 4-5 week novel, exciting concept called a partner dance class that will constitute just one part of their busy lives.

There is a tendency among intro dance teachers to tell students everything they (teachers) wish they had been told as beginners.  I implore you to resist this urge. The things you wish you had been told? You only value those things from your lens as an advanced dancer now. Even if someone had told you every useful nugget of information and addressed every mistake you eventually made as a dancer, guess what? You still would have made many mistakes. It’s an inevitable part of the learning process. I think it’s much more effective to focus on where your students actually are right now and address their actual specific needs, not what you anticipate they might wish you had told them a number of months later.

Jazz hands!

Jazz hands!

Make this beginner class an awesome destination in itself.  Imagine that this introductory series is your students’ only opportunity to experience the wonder that is your form of partner dancing, and accept that they may only experience it as a beginner.  Do everything you can to maximize every ounce of fun, enjoyment, and growth you can from those 4-5 hours of lessons!  By truly accepting and embracing the experience of learning at this level, you may actually hook them into a long term love of dance.

Recommendation 8: Know thyself. 

Self-awareness and reflection will help you identify areas where you can improve as an instructor, and can also help you better complement your teaching partner. Here are some specific areas on which to reflect:

  • I tend towards the "entertainer/humorous" style :-)

    I tend towards the “entertainer/humorous” style, hence the spontaneous heel click.

    What is your preferred or default teaching style?  Lindy instructors often fall into the “professor/analytical” role or the “entertainer/comedian” role.  Recognize your style and consider when it is most appropriate and when it might be best tempered.

  • Why are you here? I don’t exactly mean why are you on this earth, but why are you selecting to spend some of your time on earth teaching partner dance? Do you teach because you are passionate about helping new dancers learn and have fun? Do you view teaching as a status symbol or a way to gain social currency in your scene?  Are you teaching as a default or to please someone else who asked you to? Are you teaching for the money? Do you teach to give back to your community? None of these reasons is right or wrong, but confronting the reasons will help you determine your overall goals for your class, and whether teaching is ultimately right for you.  Although many assume that after you achieve a certain level of proficiency you “should” teach, you by no means have to.  My gut instinct is that if your heart really isn’t into teaching, your students will sense it as well. If your heart really is in teaching, explicitly addressing your motivations can provide comfort or encouragement when the going gets rough.

Conclusion

Just like learning to dance is hard, learning to teach is hard!  Being a great dancer yourself will not necessarily translate into good or effective teaching skills.  You must translate your passion and knowledge into an understandable form for your students and constantly adjust/adapt to their performance while simultaneously responding/adapting to your teaching partner.

My first ever lindy exchange with my first lindy BFF, Brian Gish (Portland, 2006).

My first ever lindy exchange with my first lindy BFF, Brian Gish (Portland, 2006).

Beginning dance instructors wear so many hats: cultural interpreter, tour guide, salesperson, self-help guru, cheerleader, professor, and even object of affection (lindy crush!).  They are constantly pushed and pulled between all the factors discussed above. What’s more important in a given moment, providing more material (“more moves!”) or more repetition of the basics? How much should you teach good form at the expense of “fun,” if some of your students are primarily there to have fun and secondarily to learn dance?  Will opening an analytical can of worms spark an “a-ha” moment, or will it overwhelm or bore the class? You may desperately want your students to share your zeal for your dance, and be confronted with the limits of your own influence when they display apathy or indifference to your efforts.

Just some of the many motivations your students have to learn partner dance.

Just some of the many motivations to learn partner dance, as part of my “Why we dance” video project.

Here’s the thing, though: despite all the challenges of teaching beginners, it is extremely rewarding.  You will witness an amazing transformation as your students go from knowing nothing to being competent in a set of movements by the end of a class series.  When a student comes up to me on the social dance floor with a big grin and says, “Look, I did it!”, or I see a formerly awkward student blossom with confidence throughout the course of a class, I feel a sense of pride and joy that words can’t describe. For me, an extreme extrovert, it puts even more social into social dancing. Teaching beginners is a way to ensure I will never become complacent or bored with the scene.  It’s one of the many reasons why I dance at all.

Regardless of your interest in teaching new dancers, I hope that my posts have inspired you to see the challenges of learning to dance and teaching new dancers in a new light. Despite the length of these posts I feel I’ve barely even skimmed the surface. Let me know your additional thoughts and feedback in the comments!

Additional References: 

Dancing from the Ground Up: Motor Learning Chart

Fleischman’s Taxonomy of motor abilities

* I am leaving out the motor/praxis component for teachers because it’s fairly obvious that a teacher must have the ability to demonstrate the movements clearly and effectively. 

Posted in Occupational Therapy, Swing Dance | Tagged , , , , , | 5 Comments