Giving Thanks. 2015.

Goals.

I talk quite a bit about goals in this blog. My daughters' school focuses on having GRIT and perseverance to meet your goals. My Jamberry Team Leader offers us training, leadership insights and encourages us to impress the importance of writing down your goals and making them real. But my first adult Goal Epiphany was thanks to Sensei Jimmy Pedro at Pedro's Judo Club in Wakefield, MA. You've read about this in the past here, but hear me out...

Three years ago, my then five year old was begging for martial arts classes. We had tried karate over a summer and something was missing. As my father (and I briefly) had trained  in judo, I knew the differences between the sports. By watching her on the karate mat I saw immediately that what she needed she would find in judo.

But there was a catch. A big, freakin, chronically-ill-mom-walking-with-a-cane catch...

Pedro's Judo is up thirty-two stairs. THIRTY TWO. Straight up, big warehouse style steps. Dang. We'd been to a children's party there that summer and I knew how precisely  how hard  it was for me to get up there and how lightheaded I was when it came time to drive home.

I sat in the small corner office with head instructor, Sensei Riley McIlwain and watched him do a mini teaching session with my little maniac. Oh man, she glowed. She was elated, ecstatic, like I've never seen over an activity. She was HAPPY.

And I felt fear. Deep, cold gut chilling momma-fear that I would let her down.

In that moment, before I ever heard a word about the importance of goal setting, something crystallized in my mind: I would get Maddie to this dojo twice a week, every week, for as long as she wants to train. Period.

In the years following I've had the honor of hearing Sensei Jimmy Pedro and later, Senseis Kayla Harrison and Travis Stevens speak multiple times on the power of goal setting, goal directed guided imagery and their direct impact on success. Tonight, about three years later, I listened as they spoke again.

The past three years have been rough physically - a few times I've sat in the parking lot after class with my head on the steering wheel, crying while I summoned the grit to drive home safely through a blur of fatigue and pain but other nights...

Other nights I open the windows and sing along with the radio at the top of my lungs as the tears pour down my face. I sing to give voice to the pain and anger, the power and grief and the huge, glorious, hard earned pride that stream from me as I make that short drive.

In three years, my daughters have never missed a single judo class because of my body. Twice, then three times, now four times a week, I stand at the bottom of those steps and take a deep breath. When I get up to the dojo, friends and acquaintances ask me how I'm doing and a select few there truly understand how much I mean when I say, "I made it up the steps; it's a good day."

I never knew what Pedro's would do for me, and it happened before my daughter or I ever stepped foot on the mat. For this and so much more, I am humbly, deeply grateful.

Doumo arigatou gozaimashita, Senseis Pedro and McIlwain. See you tomorrow.

Edited to add...
It dawned on me this morning that this goal has accomplished one more thing: through meeting my goal every week, every set of stairs, I model for my daughters an example of a strong, committed, powerful woman. And that's all I've ever wanted to achieve.

Original posts ...
9/20/12 A Goal Set is a Goal Met

11/22/2012 A Goal Set: Thanksgiving Update

11/27/2014 A Heart Full of Joy

Ego and the Art of ...

I've spent  a great deal of my life with a "Hey, look at me!" drive somehow lodged in my brain. For the life of me, I can't figure out where it came from - my parents gave me plenty of support, praise and attention but I still always craved being different, elite ... noticed.

In early life through college I tried to find satisfaction in this through many paths - ballroom dancing, judo, acting, yoga, basketball, choosing a unique major ... singing. Some people on driven paths just have fun with their art. Others challenge themselves with personal goals or strive to make a career using their craft . Some lonely few are just trying to fill that young need to stand out, be praised.

Look how _______  I am!
Flexible
Talented
Compassionate
Resilient
Different
Crunchy
Strong
Brave
Intelligent
Powerful

Some people know I get injured easily in yoga because I have poor proprioception , meaning my brain doesn't interpret signs from my connective tissue and muscles well. You know that feeling that says "WHOOOOOOAA baby, slow down"?People with poor proprioception don't hear that voice soon enough ... if they hear it at all. Well, I have a dirty secret: the other reason I got hurt frequently in the first decade or so of my practice. Most of my practice. Almost all of my practice.

Ego.

"I've been practicing for years, I can do the advanced variation. I don't need no stinkin block. Can the teacher see me?"

Sigh.

It can be nauseating to face such a shallow, vulnerable, reaching part of oneself and think, "Why can I not let this go?" When I closed my business and stepped away from the babywearing community, I lost more than I outwardly expressed. Yes, it was income, it was a business I loved and enjoyed, it was my tribe ... but it was also Ego. I was a known name in the babywearing community (for better or for worse) and I felt like I went from being Someone to being invisible.

Recently after two years of web-based home yoga practice through YogaGlo ("Who needs a level one class? This level three can't be too ... ow!) I began an amazing Gentle Yoga class at our local YMCA. The teacher's wry sense of humor and deliberate positioning of her mat (putting the students' backs to the mirror) began to quicken that slow-to-develop part of me. Rather than striving to be the best, to get attention, I was led inward. Apparently the path to letting go of the Ego was to let go of letting go?

The relaxation (not to mention lack of injury) engendered by this absence of internal conflict translated to my muscles as well as to my heart and mind. I began reaching with joy and contentment in my poses, relishing the release as opposed to straining for some unreasonable goal.

Ironically, the day after I realized this shift, my teacher drew the classes attention to the form of my pose with a lovely compliment. I thought about it on the way home, concerned at how my Ego would handle this ... in the past this would have spiked my excitement, distracting me from the class and prompting me to focus on the outward instead of the inward. She brought it up again at the next class - this time her flattery giving me warm fuzzies and slight embarrassment instead of my usual giddiness.

I pondered.

A wise Guru in the tradition of Aghor Yoga, Baba Harihar Ramji of Sonoma Ashram, spoke to me once in darshan. A personal interaction with a Guru, darshan can be anything from a time to speak in private to a blessing to a hug to a simple touch . He reminded me of the importance of detaching oneself from things that draw upon our energy. Detach our energy from the situation, step back and decide how, if at all, to better contribute our energy to the situation. In satsang (a lesson or teaching time, generally in a group), Babaji extended this metaphor to thoughts intruding on our yoga practice. Detach your energy from the thought, acknowledge the thought and allow it to flow by, no longer held by our attention to it.

I realized I had done the same thing with Ego. Encouraged by the manner and teachings of my instructor, I naturally detached myself from my Ego. I stopped trying to force it into submission; I stopped feeding it with striving for more praise. I just stepped back. I slid so easily, effortlessly into this state of mind that when complimented I stayed detached ... watching my ego cherish the compliment but not giving it any energy ... and then moving on.

It has been years from since my day with Babaji and I'm quite certain my yoga teacher never put "change Melissa's existence" into her daily plan. Yet here it is, a shift that has led to my increased relaxation and enjoyment of my yoga practice. How else will this small drop ripple my pond?




**I am in no way connected or receive reimbursement/product/kickbacks/magic powers from any of the companies mentioned here. All products or services mentioned were purchased by me.**

Peace.

Talking with small kids is an amazing way to really think about things. I don't mean talking TO kids, or AT them ... I'm referring to actually having a conversation. When an adult has a chance to look at a situation or a thing through a child's eyes they are often surprised at how different it looks.

During graduate school I had the chance to help a family cope with a complicated situation. A teenage girl was in a bad car accident. Thankfully she was going to be fine but she had extensive facial bruising, and an arm and a leg both in casts. The family's biggest concern was how her grandmother was going to take seeing her in that condition. I can't remember if she had anxiety or heart issues but my supervisor in the Child Life department had the idea that the grandmother bring in the teen patient's little sister for her first visit ... and before the young girl went into the room, I would prepare the child for what she would see. In front of her grandmother.

This gave the older woman a chance to be prepared for what SHE would experience in that room, but through the eyes of a six year old.

"Have you ever had a a really bad bump when you fell? How did it feel? What did it look like?"

"It hurt alot but after a while it got better. And it turned funny colors for a while."

"Well when your sister was hurt in the car, something bumped her in the face. Her face has some funny colors on it and its sore but just like your bump, it will get better."

And on, discussing casts, what they are for, what can we do to make her casts look pretty etc.

By the time we finished, the grandmother had visibly calmed down and was able to handle the visit  as well as the small girl. And I learned an amazing lesson.

Recently my fibromyalgia has been getting much much worse than its been in years. I've been trying to help my children understand the changes and support them but as the pain increased I started thinking about myself. Was I going to slip into grief again? Over-do things in my anger that I have limits?

Suddenly a new lens clicked into place. I remember being a senior (I think?) at Arlington Catholic High School and taking a theology course with Mrs. Lussier. Half the year we studied religions of the world and the other half we discussed death, dying and loss. I went on to study it in more depth during my college and graduate school years. Laying in bed last week, unable to sleep from the pain it wasn't college texts or hospice internships that came to mind ... I remembered reading "On Death and Dying" by Elisabeth Kubler-Ross in Mrs. Lussier's class.

The Kubler-Ross model of grieving talks about five stages one might experience during a grief process. Rather than being a continuum of how one is going to feel, folks actually  go in no particular order. Some people may bounce around between them, skip a stage completely ... even come back and re-experience the stages again when reminded of their grief.

Denial. Bargaining. Depression. Anger. Acceptance.

Click.

Living with chronic illness, chronic pain or a disability is living the Kubler-Ross stages. Not occasionally ... it's living them for as long as "chronic" means. But hold on, that's not as bleak as it sounds.

Sure, it means that some event is going to blind-side you and bring on the loss, the grief, the depression again. You're going to be in denial and over do it and stupidly waste energy you desperately need, or worse, injure yourself. The key is to remember that it is all part of a cycle ... and that some day again you will find peace in acceptance. And while that acceptance won't be forever, neither will the rest of it.

Cycle.

So I found I could do this. I could be sick again and hurt again. Knowing that some day I would be at a peaceful place in my cycle of grief, knowing that some day my fibromyalgia would cycle back into a less painful, more energetic state ... those realizations brought peace to my heart. And I slept.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

Many prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th). I read about it on ButYouDon'tLookSick.com and while I'm not even really a blogger, I decided to do it as well. I post about fibromyalgia because I want others living in pain to know they are not alone.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: I live with Fibromyalgia, migraines and Reynaulds.

2. I was diagnosed with it in the year: I was diagnosed in 2000. I was 24 and a graduate student at Wheelock College.

3. But I had symptoms since: Childhood. My parents spent years taking me to doctors, running tests. A rheumatologist at Children's Hospital in Boston later said he always felt I had fibromylagia but "back then we didn't believe it occurred in children". In fact, most doctors didn't believe it occurred at all. My symptoms changed dramatically in 2006.

4. The biggest adjustment I’ve had to make is: Being realistic. It doesn't matter how badly I want to drive to a friend's house 30 minutes away. I might be able to make it there, but I won't be able to make it home. I grew up in the "You can do anything you want to do" generation ... which is generally true. I just can't do things the WAY I used to. I can still do many strenuous things, but I need to rely on others for help doing things outside my limits and I need to be constantly aware that pushing my limits will ALWAYS have consequences.

5. Most people assume: that I'm a patient, strong mother and a bit of an airhead. I'm none of the above. Parenting with fibromyalgia is the hardest thing I've ever done and it doesn't get easier. Ever. I hate that my cognitive changes make me look like a ditz and lead me to make embarrassing errors. I have a degree in neuroscience for pete's sake, and now I can't think straight. I miss my brain ... and most people assume I can think normally.

6. The hardest part about mornings are: not zoning out at the computer, getting the kids out the door on time. My brain and body just don't move well in the morning and it's a daily fight.

7. My favorite medical TV show is: House! Come fix me you drug addicted maniac!!

8. A gadget I couldn’t live without is: I love my microwavable stuffed cat that warms my feet every night. I also love my Nook - it's so much easier to read when I don't have to strain my hands holding a book open! And my ice packs. I hate them but I can't live without them.

9. The hardest part about nights are: Climbing into bed in pain. It's so much simpler to stay up late staring at the tv or computer but I can't do that AND parent two little girls. Once I get into bed there is nothing to distract me from the aches and spasms. I can understand why people in chronic pain are prone towards self medicating.  

10. Each day I take at least 8 prescription pills and four over the counter meds. I should be taking vitamins with more regularity but I get overwhelmed. I often take more prescription, over the counter and herbal remedies depending on the day.

11. Regarding alternative treatments I: have tried them all (almost). No, I'm not kidding. Yes, I've even tried ______ . Some have helped a bit, some not at all and some have made me worse. I find a balance btwn allopathic and naturopathic treatments work best for me. Sometimes even when something works (eg water physical therapy), the amount of energy it uses makes it impossible. Whatever works for you personally, I'd love to hear about it. BUT if it works for your neighbor's niece's cousin or you saw it on TV or the internet I may seem a little brittle when you suggest it. Please don't interpret that as my being ungrateful for you caring for me - I really do appreciate your concern. I LIVE this though, so if it's out there you can bet I've had it suggested to me. Repeatedly.

12. If I had to choose between an invisible illness or visible I would choose: This depends on the day you ask me. Most of the time I am extremely grateful that my illness doesn't make people stare, doesn't make me feel even more self-conscious than I already am. Other days ... I wish my children could see a meter telling them about my energy level or pain level. It's really hard for them to gauge. I wish the person who glares at me when I legally park in a handicap spot could understand I'm not defrauding the system. I wish people could understand that I don't mean to forget to call, I'm not really a snob for not recognizing them, I really don't mean to lose every piece of paper you hand me, I really CAN'T walk all over the store when you tell me something is on Aisle 1 but its actually on Aisle 16. On THOSE days ... on those days I wish it was visible. Neon would be nice.

13. Regarding working and career: I had to close a thriving business I loved when my fibromyalgia worsened ... and the grief was intense. I was also unable to return to work at the part-time job I had loved. Right now I am focusing on raising my children as best I can. Someday they will be in school full time and will require less of me physically ... at that point I will see where I am in the world and how I can find a place in the workforce again.

14. People would be surprised to know: that I've done many small amazing and exciting things, both before and after my fibro worsened. I've swam with sharks and sea turtles, walked on hot coals, gone sky diving, driven across Costa Rica, been on a ballroom dance team, taken kickboxing and judo, written a children's book... 

15. The hardest thing to accept about my new reality has been: The "I really can't". Some days, I can walk around a museum for two hours ... but other days I really can't drive across town to pick up my daughter at school. It happens at least once a day, sometimes more often, that I am caught off guard by an "I can't".  I like that they still catch me off guard ... I think it means that I still believe I can push my limits.

16. Something I never thought I could do with my illness that I did was: I never thought I could live like this without grief etching itself into every hour. When my fibro changed in 2006 I grieved for the many freedoms I lost. In that time I could not see a future without that heartache ... I knew it would be there but I couldn't SEE it. I still grieve when I run into a barrier that means I miss something precious - a nature walk with my children, driving to see a friend and their new baby - but I've found a peace that I've never had before.

17. The commercials about my illness: The only commercials for Fibromyalgia are trying to sell drugs. They frustrate the hell out of me and hurt my children. When a four-year old sees a commercial for something like Lyrica, they run excitedly to Mommy, full of hope and proud they can give her something to relieve her pain. It hurts their little hearts to hear how thankful I am that they thought of me, but no, honey, that medicine doesn't work for Mommy. (Follow this with talking about how they can bring me ice packs to help or snuggle me when I'm too tired to walk etc.)

18. Something I really miss doing since I was diagnosed is [in my case, since I worsened]: Hiking, walking with my children. Driving long distances, spending the day with friends far away. Running my own errands. Teaching moms how to use baby carriers at the Boston Babywearers meetings and at the workshops I ran. Wearing my kiddos in carriers (this loss was the keenest) .

19. It was really hard to have to give up: My spontaneity. I can be spontaneous in small ways IF I keep it local and IF I have enough energy and IF I don't need that energy for something later on. Wait ... is that actually spontaneous? 

20. A new hobby I have taken up since my diagnosis is: Knitting! I've also learned home canning. It's so incredible to be able to crack open a comforting jar of my OWN pasta sauce, chili or fruit when I'm feeling too weak to make dinner.

21. If I could have one day of feeling normal again I would: I would do something outside with my husband and children. The beach, the woods, I don't CARE ... just walk and run, play tag with them. And I'd drive! I'd drive wherever I wanted to go, to some random town fair or festival on a whim. And then I would come home and cook a fun elaborate dinner. And bake.

22. My illness has taught me: Enjoy the good days to their fullest. Try to find grace, peace and joy in the bad ones.

23. Want to know a secret? One thing people say that gets under my skin is: I hate when people suggest I try something obvious, like a heating pad. Seriously people, this isn't new to me. I also hate when they say, "Does anything help?" I don't know why this one is so hard for me, since it's meant with good intentions. Sometimes I feel awkward when I have to say, no, my story doesn't have a happy ending (so far). Other times I feel so raw from grief or pain that it just feels too personal.

24. But I love it when people: I love it when people remember to park close or offer to let me off near the door of where we are going. I love it when people bring me food or fresh fruit. I love it when they keep an extra eye on my children when I am too tired/sore/foggy to do so. I love it when my kids bring me glasses of water or ice packs without my asking. I love when my husband brings me iced teas and bags of cheetos and doesn't hate me when the pain gets too much and I whiiiiiiiiiiiiiiiiiiiiiiine.

25. My favorite motto, scripture, quote that gets me through tough times is: Work of head and hand is my salvation when disappointment or weariness burden and darken my soul. ~~ Journal of Louisa May Alcott

26. When someone is diagnosed I’d like to tell them: Read the Spoon Theory on Butyoudon'tlooksick.com ... share it with everyone who cares about you. Get a handicap placard - I know you CAN make it all the way to the mall from a far spot, but will you have the energy to do your errands after that? And get back to the car? AND drive home safely? Don't wait until you get stuck, get it now ... you don't have to use it unless you need it. Also, find a way to eat healthy when you are too tired to eat ... and when you fall off that horse, keep trying. Comfort food is ok for comfort but this is life, honey. And you can't comfort yourself everyday. Living on delivery or fast food may be easy but you will feel worse. And quite frankly it starts tasting pretty lousy after a while. Save it for your WORST days. 

27. Something that has surprised me about living with an illness is: that I can get past the drama and keep living, keep doing the things that need to get done.

28. The nicest thing someone did for me when I wasn’t feeling well was: My mom and dad do more for me than I can say but my two favorites are when my dad picks up a big bag of fresh fruit, veggies and milk for my kiddos and when my mom insists I give her a bag of laundry. I also love it when my mom takes me out to dinner or lunch. I love enjoying an easy meal without having to drive/cook/clean etc but most of all I just love her company.

29. I’m involved with Invisible Illness Week because: sometimes having an invisible illness makes you FEEL invisible. And that's a horrible way to feel.

30. The fact that you read this list makes me feel: appreciated, heard, strong.

What can you accomplish...

... when someone believes in you?

Two years ago I began to have difficulty driving. My comfort-level and driving radius began to shrink as my energy, concentration and focus declined. I said goodbye to friends in Framingham, then Arlington... let go of grocery shopping, knitting classes and mom's nights out. Finally I let go of acupuncture and driving the children to school.

I drove as long as I felt safe, pushed myself to every safe limit and even tho I was never afraid I had to admit my abilities had changed.

One year ago, I stopped driving.

I still climbed into the van about once a month and piloted it down the street to the pharmacy or the natural food store to keep my nerve but I returned home each time exhausted and worn.

My family and friends rallied around me, offering rides and company. Some people are homebodies. Some people have to be on the move ... I am the latter. Not being able to hop in my car and drive the kids to the playground or the library was killing me. There is no helpful public transport nearby and nothing we can walk to.

About a month ago something changed. I began to wonder if I could look at this in shades of gray as opposed to black and white. Maybe I could get back to driving just a little bit. Maybe there was something I could change that would make it just a little bit easier.

It. Was. The. Van.

Why the heck do we have a van? My husband's SUV is a decent size for us with plenty of cargo space. I bought the van thinking we'd give rides to the girls' friends in the extra seats. Except... if I can't drive, then I can't drive my own kids, let alone extra kids. It was GREAT to get my heavy-heavy infant and little kiddo into their rear facing seat and I could easily get their double stroller into it. Except... they are bigger kids now, sit forward facing, can climb into their own seat and don't ride in a stroller any more. It was fantastic for carrying my huge babycarrier stash to conferences and babywearing meetings. Except... I don't teach any more because it's too fatiguing.

Why the heck do we have a van?

Huh.

I was torn. Why trade in my van for something smaller, easier to manage when I haven't driven in a year? Should we really be car hunting right after having to replace my husbands car due to an accident? Can I handle the strain of another vehicle search and negotiation?

My husband said Try it. My mom and dad said Try it. I know all three of them said it with reservations ... I know they weren't convinced that a different car would make a difference. But what if it did? Tina and Lise said GO for it!

It had to be small enough that I could maneuver it without too much strain, a seat that was not to high nor too low, large enough to be safe and comfortably hold my family. Oy.

Research, comparisons, eyeballing cars in parking lots led to visiting car lots and then mini test drives (some cars I never even got out of the lot). Until today. Full serious test drive. For an accurate comparison, I drove Maddie to school first in the van. Still completely exhausting.

I know alot of people who get nervous driving a new vehicle ... try doing it out of practice. It was...

GOOD!

I'm not kidding myself. My body, my abilities are still the same. But if I can make driving just a LITTLE easier and be able to drive just a LITTLE bit, I know my family and I will be so much happier.

I know it seems bizarre that I didn't try this earlier but those who know me truly understand how hard I have tried to hang onto every possible shred of freedom these last fews years. And I did try other people's cars but never before realized all the components that impacted my abilities (tinted windows, low/high seats, large size etc).

So thanks, Paul, Lise, Tina, Mom and Dad ... its amazing how a person's life can open up because someone has faith in them and encourages them to try.

Happiness is ... Brocolli?

I have never been a broccoli fan. I don't HATE it, but give me a fridge full of other things and the broccoli will go bad if the husband and minimonsters don't eat it.

Hoooooooooooooooowever. Many weeks research on the ever-reliable Google and Wikipedia lead me to some interesting RELIABLE websites ... and a remotely-possible new diagnosis.

There are only two ways of confirming I have or don't have this genetic thingamabob: convincing my doc to give me a new med on a trial basis (AHAHAHHAHAHAHAHAHAHAH ... hope you didn't pee yourself on that one) or eliminating the possible triggers that affect people with this. The triggers are odd but fit my pattern to a T.

• high carb meals
• high sodium diet
• alcohol
• resting after exercise

So now here I am, mocker of the Atkins diet and all other extreme eating fads, having to learn how to eat low-carb, low sodium. And not kill anyone. A caveat ... I still think these and all other extreme diets are not ideal but this is medically necessary for this condition.

I found this helpful carbohydrate food pyramid. I really don't want to follow someone's diet. I want to learn for myself what helps my symptoms so this visual is just what I needed. This low-carb veggie list is also a great self-check.

So here is my fast, easy way to make broccoli yummy.

Spicy Seared Broccoli

Rinsed Chopped Fresh Brocolli :D Duh.
Garlic Chili Sauce
olive oil or spray
granulated garlic
tamari or soy sauce
Kosher or sea salt
Sesame seeds (optional)
Skillet with lid

Heat a skillet (I prefer my cast iron) on high until it is super hot. Spray with oil or wipe with an oiled paper towel. Toss 1/2tsp chili sauce into the hot oil and stir quickly. Toss in brocolli and stir well. Spray again with oil or drizzle, then sprinkle as desired with salt, garlic and sesame seeds. Toss quickly until edges or broccoli are seared. Pour about a tbl of soy sauce into LID OF PAN, along with about 2-3tbl of water. Flip lid over on skillet. Pick up skillet, holding lid in place and shake skillet to mix soy sauce around. Put back on heat for 3-5m. Check to see if broccoli is steamed as you like it. If not, add more water to pan and recover. Repeat as needed. We like ours only very lightly steamed. When steamed as you like it, remove lid and allow to cook 1-2m more over high heat.

Yum :)

Can be modified many different ways with different flavorings but avoid any marinades that make burn off to a nasty flavor over high heat (ie if you want orange, eliminate the chili sauce and replace the soy sauce with OJ and orange zest). If you really want a hint of sweetness or to use a sugar based marinade, add it during the very last 1-2m of cooking.

Enjoy!
Melissa

In the eyes of a stranger

Who do you think you are?

Really?

For alot of reasons, I used to believe I wasn't *really* sick or disabled. Part of it was denial (a step in the coping process), another part was being told it was all in my head (maybe they are right?). Maybe I really WAS lazy. Maybe I wanted attention.

For many years I really believed all that. So what happens when things get worse? Things DID get worse. I got cancer. I lost pregnancies, needed many surgeries, lost my ability to work and drive. When that happens, one begins to think, well, now I must deserve all this. Maybe I asked for it.

So underneath it all I must not have much worth.

People who know me will be quick to deny that statement but look inside yourself. Isn't there *something* you believe about yourself that those who love you would argue?

I've worked hard over the last year to let go of much of these self-lies. It ain't easy, babe. But yesterday something happened that pushed me forward one more step, helped me walk away from one more lie.

I had the chance to comfort an injured stranger who had fallen off the sidewalk, onto our extremely busy street at dusk. She'd had a seizure and was terrified by the strange faces around her. I was able to connect with her and keep her calm until she was lifted into the ambulance.

Emergency services seemed to know her from prior falls, though she didn't recognize them. I had to wonder who she was. Was she diabetic, epileptic? A drug user, an alzheimers patient? I'll never know. Could I end up like her someday?

Kneeling with her as cars slowly splashed by and flakes of snow fell on us, I saw something in her eyes that I will never forget: she felt safe with me.

If a scared, hurt, confused stranger can find comfort in me, there must be some good in me. I don't mean that in a, "See what I did! I'm a good person!" kind of way. I mean that she helped me let go of the cold, dark, very real nugget of "I must be so flawed that I deserve this pain" in my soul. The small-child part of me just let it go and picked up an image to tuck away in its place: the relief in a stranger's eyes.

Hi,my name is Melissa...

... and I am addicted to Artisan Breads in 5 Minutes a Day.

I've been struggling for the last year with my decreasing level of functioning - that's no secret. Like many people I'm a time-filler. When I was home alone with my first daughter I tried a number of neat, stimulating work from home jobs to keep myself other-than-momming fulfilled. I never wanted a full-time job as I love being home with my kids, but I always seemed to poke around for little extra things to keep me challenged.

Well now I'm benched. I closed my business, can't continue working in my past fields and am applying for disability.

I've spent a lot of time feeling various things - glum, lost, even guilty. I come from a family of entrepreneurs on both sides, going back as far as we can identify. When I lost my ability to work, I needed to reframe my sense of worth. The biggest challenge for me is my loss of independence. It's humbling to suddenly need assistance doing all the things were proud of accomplishing independently.

One day a precious friend introduced me to the book I linked above. I don't think either of us expected what followed. I picked up the book and some yeast and mixed up a batch of dough. No kneading, no long periods of standing in the kitchen, no complicated recipes or rising times that challenge my fuzzy thinking and poor memory. And then there was bread. GOOD bread, not passable bread machine bread. AMAZING bread.

Many folks know the feeling of amazing satisfaction that comes from handing their family something warm and nourishing and watching them enjoy it. This baking method has given me back my independence, contentment and satisfaction in the kitchen, given me away to create without triggering a flare or using up my small reserves of energy.

I never thought I could find healing in a cookbook! My special thanks to Paul, who never grumbles about running out for yeast and flour ... I couldn't do it without him.

Simpling.

In herbalism, the practice of simpling is a learning technique. The student chooses one herb and learns it in as many possible applications and forms as possible. The learning, using, exploring, continues until the student practically OWNS the herb. And then, only then, do they consider learning another. This approach also applies to remedies ... for one who practices simpling, a single-herb tisane may be the first line of treating a condition.

I forget to simple.

I studied herbalism at home for years before my daughter was born, learning by simpling. When I became pregnant I became concerned about herbal safety during pregnancy and was too overwhelmed to seek out a trained herbalist to guide me. Unwilling to let go of my experiences, I translated them into homeopathy ... many homeopathic remedies are derived from the same substances I was already using.

But then I became a mom. When you are a first time mom to a sobbing underweight colicky babe with reflux, food sensitivities, and sensory issues, you need to be super human to not be tempted to throw everything possible at the problem.

I really tried simpling with homeopathy with her but we couldn't find the right remedy. So we tried homeopathic blends. And herbal teas. And mainstream meds. And more mainstream meds. And elaborate elimination diets.

I understand where I got lost and honestly, I don't fault myself at all. She was close to failure-to-thrive and not sleeping for more than 30m stretches.

Then one day I fell asleep next to her ... and she slept 2 hrs. For over a week I slept on the hard living room floor next to her, afraid to bring her into my bed ... but when I finally did, she slept four hours.

It was simple. It wasn't white noise, a swing, Daddy swinging the car seat, driving in the car, music, nightlights, NO light ... it was the simple answer.

I keep forgetting about simpling.

Today I was making apple cranberry sauce in my crockpot. When I broke out my mother's recipe a little while ago I was all cocky about The Best Cranberry Apple Sauce ever. Except that it didn't taste like moms. Maybe b/c hers is cooked stovetop? Regardless, I started letting go of the recipe and just enjoying the ingredients.

Hmmm ... lemon juice. Why lemon? Carrot-orange juice with some orange peel might work.

Macintosh apples were too tart. Let's try some gala and honeycrisp in there to.

Maybe go lighter on the cranberries so I don't need as much sugar?

Needs more texture. Try leaving skin on? Too much ... try leaving skin on one third of the apples. Perfect!

I began to connect with something I had let go of. Anyone who reads this knows I wing most recipes but for some reason this reminded me of that dusty section of knowledge I had patiently gathered. Blackberry leaf, raspberry leaf, catnip, plantain, oatstraw, passionflower, calendula, marshmallow root, slippery elm, red clover, alfalfa, stevia, peppermint, rose hips, garlic, onions, honey, lavender, chamomile, eucalyptus, ginger, cumin, cayenne ... and of course, my precious lemon balm.

What else have I misplaced? What other comforting homespun ways have I put aside? And how can I continue to stay in touch with the comforting, grounding practice of simpling, in all things?

Silver Lining.

This past year has been unspeakably hard for many reasons. A special person asked me, can you see a positive to your illness?

I thought about it. And answered No.

That was unusual for me ... growing up I could always find the silver lining in my illnesses.

Today I had an appointment with a rheumatologist. After having a medical student take a detailed history from me and doing a cursory 30 second exam, she spent 15 minutes mocking me, emphasizing the need for me to 'pursue psychiatric care' and finally going as far to say that I didn't really NEED the cane. According to this woman who did not test my balance or leg strength, I 'felt the need for something comforting to hold onto'. I was using it as a proverbial crutch. No pun intended.

I held my composure and dignity until I reached the hallway ... and then I sobbed for a very long time.

I became angry and I looked at myself. Then I had a really big margarita and took a nap. And then I looked at myself some more.

I am not weak. I am not bringing this on myself. I am a brave strong woman who parented her children alone for months, despite being more disabled than ever. I stood by my husband while he walked through the darkest valleys of his soul. I consciously chose to work on my self issues to better support myself, my children and my husband without enabling. I reached out for professional, spiritual and social support whenever I needed it.

We are a healthy strong family unit because I chose to keep us strong and because my husband accepted my decisions and support.

I'm no longer angry or defiant at you, Doctor.

Doctor, I am grateful to you for showing me the silver lining. I sincerely hope you gently find the wholeness you need to see your patients with more compassion. No one with joy and peace in their hearts could look at a woman who is clearly holding back tears and continue to hurt her. I hope you find what you are missing. Thanks for the perspective.

TMI. Now what?

I'm watching my two little girls play house in our living room with too much information in my hands.

I recently had another MRI - a redo of the first because they weren't able to get enough information from it. In my area of the US, standard practice for diagnostic test results is that the testing centers do not release the results directly to the patient. In most cases, the patient has to wait until they hear from the doctor - by phone, letter (for good results) or at their next appointment.

After the MRI had a week and half wait for my appointment :

I devised the perfect plan ... I called the MRI center and told them that I needed printouts of all of my reports for my disability application (true). The nice lady there said SURE, in fact I'll be sure to get your report read today so you can pick up this afternoon.

I called that afternoon however and the story had changed.

"I'm sorry ... it is center policy that we cannot release test results to the patient. You must wait to get them from your clinician."

Sooooo ... one of two possibilities had occurred. 1) She got hollered at by her supervisor, or 2) the smudges I had seen on my MRI were not just smudges.

I asked if she could drop them in the mail to me so that I could get them to my disability claims person. She agreed ... and she did.

So now I am sitting here, looking at this paper ... which is quite clearly Possibility #2.

Now what?

Before you go scolding me on being a non-medical person who shouldn't try to interpret my results,you should know that I'm not. My undergrad degree was in Behavioral Neuroscience. My grad degree was in Child Life in Family Centered Care - helping children cope with medical issues. I've worked both as a researching Medical Librarian and as a Certified Child Life Specialist. And I *know* not to interpret my results.

I know that I have no idea what an elevated C-RAP blood test result means ... and it stops at that.

But I can read a report and understand clinical findings. Especially when it is written in plain english that they found X, and that it is consistent with A, but also possibly consistent with B, C, or D.

And A, B, C and D aren't fun. They aren't cancer, but they kinda suck. Big time.

I'm not going to try to sit here and think about the future ... what this could mean, which one I might have. That is what my appointment in 8 days is for.

Right now I just have to cope with a tiny conundrum ... TMI. TMI in my hot little hands. I don't dare post on Facebook about it - my whole extended family is on there. I don't dare tell my mother and don't really want to burden my siblings about it. I honestly don't feel the need to "unburden" myself right now, so that's good. It's just weird to be sitting here on my brown ikea couch that I bought with Tina, watching my children play and knowing there is something wrong in my brain.

It actually a bit comfortable ... to know that I don't have to deal with it yet. I don't HAVE to tell my mother yet, and watch her pain. I don't have to start researching treatments.

I have eight days where I can relax ... I know EXACTLY what my results say and I don't have to live that life yet.

Circles.

I've never understood our society's weird perception of grief.

Media ogles unique and exotic griefs. Empathetic strangers share, remotely, safely, the griefs of celebrated popular figures. Yet when it comes to our own griefs, our own losses ... we have no blueprint.

During my graduate degree I was blessed to intern with a children's loss/bereavement homecare program. The words of my advisor resonate with me daily.

There are many griefs in our lives ... the loss of a dream, the loss of a love, the loss of someone we hold in our heart. Many folks think "sadness", "death" when they hear the word grief but for me it is less ominous. Griefs can be those disappointments that hurt our hearts, the fear of pain to come...

There are many ways to cope with grief - too many to count - and no one person can judge the healthiness of one over the other.

One thing my advisor pointed out to me that is irrefutable, however, is the impact that grief has on our Circles.

Who is in your circle? Do you have a large family, a few very close friends, a spiritual community? Are you active in online communities? How does your grief affect your Circles?

When grief strikes most people respond in one of two ways ... some reach out to their circles, often even reaching out to create wider support circles. And others close their circles, connecting closer with those safest for them.

For some communication is therapeutic ... the worse it gets the more they reach out, lean on their widening circle. For others communication is draining ... the worse it gets the more the griever needs to just cuddle their children and turn off the phone.

I observed families through many variations on these themes. Over time I began to observe my own habits. What are yours?

When my griefs are wrenching but I can wrap my head around them - miscarriage, a bone graft, the loss of trust in a loved one - I reach out, widen my circle.

When my griefs are harder to grasp - the impact my health will have on me and my family - I close my circles.

I wish we talked more about grief with kids, with each other. I have so many dear friends who want to know what they can do, how they can help ... its especially hard to grasp if you have never closed your circles yourself. I just need them to know that I love them for loving me and that I am doing ok. This type of coping isn't about denial - neither denial of the problem nor denial of our need for support.

I'm not sitting here grieving over my fears. I'm loving my children, enjoying the energy I have. It's scary, not knowing something so big, that will impact my babies. But I know you are there if I need you :)

Looking for a roadmap.

I'm stuck.

I hopped in my car, packed up my family, drove down the roads I drive on everyday, aimed for the same familiar places we are used to haunting. And wouldn't you know it ... we're lost.

The roads have been under construction quite a bit for the last three years so we have become very adept at finding new routes ... sometimes we find ways to get to our favorite places with a little extra planning. Sometimes the roads are just closed and we have to find new places to go.

At the end of July, however, I came home from two back-to-back family vacations and found out that there was apparently an earthquake or something.

Almost none of the roads are open now ... and no one can tell me what happened. Oddest thing.

I keep hoping that construction will be done soon, but the powers that be have no idea how long it will take. I lean on friends and family and thankfully we can get to our have-to's and some of our want-to's. We're finding new ways to bring the joy back ... a market we hadn't found before, a library that can come to us even if we can't get to them.

I just don't like driving around too long without knowing where I am going ... I'm afraid of running out of gas.

So if you happen to be talking to the folks who build the roads, tell them I understand it takes time and I know it is completely unpredictable ... just drop me a map once in a while and I promise I won't complain.

Waiting.

A mother spends years, if not decades trying to help their children understand waiting. I have a five year old and an almost three year old ... its always interesting for me to watch them process things similarly, differently.

Some things never change.

Children and adults of every age all have times when they just feel little. Small. I think alot of things that are hard for small children are just as difficult when adults feel little. Frustration, anger, loneliness, fear. We forget our coping skills.

I'm waiting right now. On thursday my neurologist will give me my most recent test results. I say most recent because another battery will follow this appointment. I'm trying not to focus on the fact that she moved the appointment up two weeks and just keeping doing the things I do everyday... and that usually works.

But every once in a while, when I get too tired, too hungry, to overwhelmed, I just feel small ... and I suddenly feel alot more compassion for my two little girls, learning all these things for the first of many times.