Hope, revisited

One of the benefits of enjoying a prolonged recovery is the ability to sit and ruminate over lots of things.   There are two recurring themes really, which regularly come to mind...one is the captivating yet elusive feeling we call hope.  The other is compassion. 

I believe that hope involves a process that is both active and receptive...one which ignites a curiosity about the human condition, and a desire to take part in it.  It is an ongoing practice.  It requires an embracing of our vulnerability in exchange for the armor of our well-cultivated sense of self....that one which sets itself apart, or makes us somehow "different" from other human beings.  As Brene' Brown shares in her book Daring Greatly, Shedding this armor is what we long for, and are most afraid of.
I came across this article a while ago that shares this understanding beautifully: 

CNN: How Hope can Help You Heal

I don't think walking the thin line between hope and denial, or grieving and "moving on" (whether relating to death of a loved one, loss of a dream' or loss of an ability) is something we ever get "good" at.  I think it is a process...a distillation, if you will...of the stuff that makes us human.  If we're lucky' we get the honor of finding other struggling souls along the way.  Some may seem to engage in this dance gracefully, and others of us go into the gig kicking and screaming.   (I would qualify as the latter).  

The point is....hope is a communal thing.  We need folks to help us keep hope alive, to maintain our grounding in reality, to remind us to laugh, to take ourselves less seriously, and to pick us up when we're down.  We need people to remind us that even though life is messy and complicated, it is also like one hugely-magnificent, gritty, textured, experiential art project.   The process can be yucky...really icky and smelly sometimes.  We might even want to start over.  But this life is our canvas, and we can either trash it or share the masterpiece.

It seems that many folks are reacquainted with this "soft spot" through encountering their own difficulty and struggle.   When I pause to really think about it, this reacquainting is something I have come to treasure deeply.   It is the part of me that I hope to be able to continue to touch into, especially in times where it is easy to get swept up in the whirlings of my mind--where things become too cerebral and I clamor for some kind of ultimate answers.   I share the tendency that a lot of folks have to try and fix, to jump to some kind of an assumption or conclusion, make a connection, or whatever....in an attempt to steer clear of the soft-spot--that receptive part which can be touched so deeply if we allow it.

In working through difficult times, Pema Chodron tells us:  

Most of us do not take these situations as teachings.  We automatically hate them.  We run like crazy.  We use all kinds of ways to escape....all addictions stem from this momet when we meet our edge and we just can't stand it.  We feel we have to soften it pad it with something, and we become addicted to whatever it is that seems to ease the pain.  In fact, the rampant materialism that we see in the world stems from this moment.  There are so many ways that have been dreamt up to entertain us away from the moment, soften its hard edge, deaden it so we don't have to feel the full impact of the pain that arises when we cannot manipulate the situation to make us come out looking fine.        (When Things Fall Apart, Chodron) 

Interestingly, as I visit with patients, the thing I am most concerned about is that they can perceive me as somehow "different" than they are.  Now that I'm no longer donning a beautiful hospital gown and I happen to be wearing a name-badge, folks reflexively perceive me as someone here to "help" in a service-provision sort-of way.   Actually, I often end up minimizing my role... telling folks that I am really just coming back around because I love talking with people and hearing their stories (although usually they ask about my little scooter, and notice the "boot" on my ankle, which segways into the fact that I was in this place a year and a half ago)  It usually isn't until I sit down and really listen that genuine connection happens, and I continue to ponder their stories throughout the day.  I hold their stories close in my heart and keep them with me.  

I also feel blessed, in a way, to have been given this "life-time out" called recovery...to learn these things....         

.... I also like to write about them.  I did this piece for the Elephant Journal (first writing I sent elsewhere, outside of this little blog.) published yesterday.   One of the small joys of learning self-compassion, becoming more mindful, and trying to stay in touch with my own soft spot. 

Lessons in Humanity as Learned from a Sparrow

 

Grief

I am beginning this post with a disclaimer.....That being, if you are looking to read something uplifting and pleasant, you might want to hit the "back" button.  This post is not one of those..... (And it is a long one too....so now is your chance.!)

"Loss" is something that is very palpable in our home right now.   Some of you may know that Scott's dad passed away about two weeks ago after several years of enduring a declining "quality of life" (don't really like that term, but I'll save that for another post.).  Despite everyone's desire to encourage and uplift him, Gary was just plain tired.  Without minimizing his leaving us, we all believe that he felt it was his time.  Scott's family was present while Gary passed....and as far as death goes, the experience was really about as peaceful as anyone could have hoped.   No physical pain (he suffered a massive brain hemorrhage), limited or minimal suffering; loving family present; his spirit finally leaving his tired physical body.   We have chosen to focus on these things because, well, they are true. The added bonus is that it is easier to move ahead if we gloss over the "loss" part.   If we just highlight the positive aspect of Gary's passing it seems that life goes on as usual.   The problem is, it isn't that easy.   Forty-something years of sharing in a person's life does not just vanish....it must be grieved.   Grieving is hard work.  It is unpredictable, and it takes time.

I remember well the grieving that Scott and I had to do while we struggled with infertility.  The experience was wrought with a strange interplay of emotions...complicated by the slippery and evasive feeling which we tend to call hope.   One friend of ours who also struggled with infertility (and countless rounds of IVF and other assisted fertility measures)  made the comment several years ago which I will never forget:  "These medical folks....they try to sell you hope.   They keep you coming back, each time hoping that 'this time' you will hear the good news you've been longing to hear."   We had to think long-and-hard about the parenting journey...what it was that we longed for during that time.   Was it the "bump?"  Was it the feeling of knowing that I had a life growing inside of me?  Was it the glow of pregnancy?   Well sure it was.  It was all of those things.  It was gut-wrenching and painful to finally embrace the realization that we would not experience those moments.... the childbirth experience which we grow up dreaming about and believing will happen someday.    

BUT, to be ready to move on..... making the decision to adopt, we needed to grieve all of those things.    It was hard. hard. hard.   At the time, words were ineffective in helping to get through it, and there was nothing "rational" to help smooth the process along.  It needed to be felt....   

In reality, what we had longed for was the experience of parenting.   Of loving and being loved by our children. It was sharing our lives with budding little souls and celebrating everything about them.     It was the deep experience of living--which children embody, that we longed for.....and adopting launched us into that new and exciting realm.    Since this realization, it has been an exciting ride and we have not looked back.    But we did not get a "get out of grieving free" card.   

My recovering journey has also been one of grieving...to an extent, with a similar "feel" to that comment which my friend had made:  "These medical folks...they try to sell you hope.   They keep you coming back, each time hoping that 'this time' you will hear the good news you have been longing to hear."  This time, it is not in anticipation of a pregnancy.   This time it is in anticipation of a functioning and less painful limb, along with the cherished ability to "move on" with living more normally (with minimal interruptions or detours).   

"Specialists", by their nature, are very focused on fixing the problem in their area of expertise.  They're dedicated to helping to achieve a desired result....be it conceiving a child, curing a disease, or fixing a mangled limb.....and they take great pride in being tenacious and good at what they do.  

I am lucky to have a young foot-and-ankle specialist who is very personable.   So personable, in fact, that when reading my last CT scan, he exclaimed to the resident while I sat there "Man...Check this out!"   (Being a person who easily takes on feelings of other people, I got excited too for a moment....until I realized that it was my mangled tibia he was referring to.)   He pointed to an area in the middle of my tibia where the bone had failed to regrow, as well to a large shard of bone that protruded from just above my heel.   As he recalled the severity of the fracture (calling it a crushing injury....in medical terms: "IIIC, Complex, comminuted, distal tibial shaft fracture with non-union) we talked about these procedures (tissue-transfer/free-flap, bone-graft, reconstruction)  falling under the category of limb preservation or limb salvage. (I know...the theme from Sanford and Son comes to mind as in "salvage yard." Ick.)  I admitted to him that this has been a long recovering road....which he acknowledged, and I asked him realistically to what extent we should keep this "limb-preserving" experience going.   He was confident in current medical technology, admitting that even at the time of my injury, the technology of replacing the ankle would not have been as accessible as it is  today.    He assured that if I had the patience to hang in there for two additional procedures, my ankle would regain its function to a good degree.   I am trusting that to be the case.

Nonetheless, there is an emotional, spiritual side to the experience that is very difficult....and it feels very much like our earlier fertility experience.   It is hard to hang in there somewhere between letting go and being patient with the process, and hope is a delicate thing.   There are no guarantees.    

....but as always, we keep going.   I write.   I put this out there because we are not the first ones, nor will we be the last ones to face these kinds of challenges.    As neat-and-tidy as we would like it to be, the business of living is very messy.    

...and we try to be there for one another with our patched-together and imperfect selves, embracing varying degrees of certainty and fluctuating levels of gratitude and loss.  We strive to be fully HERE, and know that we are stronger because of our shared experiences, however messy they are.  

 I wish peace for my hubby and his family.  I wish peace for all folks struggling with the ebb-and-flow....and the fragile messiness of life.  

Namaste.       

Gratitude Post....Part 2

As part of my self-imposed mindfulness training, every day I am looking for areas of deep gratitude.  Yesterday while was in the pool at the Y, I couldn't help watching a particular mom with her three children....one infant, one toddler, and one pre-schooler.    I couldn't help but to be transported back to the time when Scott and I longed so much for a family. 

We went through the rollercoaster of infertility for several years before deciding to adopt...eventually finding our kiddos through the "special needs" adoption process.   It was exciting and stressful, life-giving and life-zapping all at the same time.    The homestudies, the paperwork, the touch-and-go of international politics potentially halting the adoption of Kai (who was languishing in his orphanage as a failure to thrive toddler).   These were trying times.....but we got through them.  

As I look back and remember what it was that I had longed for in becoming a parent...it was a depth of experience.....that timeless quality which happens in the "here and now" while immersing oneself in the lives of one's children.  

In watching this woman in the pool...completely present with her kiddos, I couldn't help but smile to myself.    All those years of longing.   All those years of striving to become a parent had somehow dissolved into a bad dream from years ago.   In an instant I recalled the mixed blessing it was to finally have our kiddos.  Yes, there were the stinky diaper changes, but there were also the tender moments of having my children fall asleep in my arms.   There were (and are) the ugly meltdowns, but there are also the moments where we laugh ourselves silly.   As I breathe in these moments....ALL of them, I realize that this is what life is all about.    The good and the bad, the magical and the treacherous, the wonder and awe as well as the struggle. 

A couple of weeks ago, Jade had a little surgery to close some areas in the front of her palate to prepare her for some orthodontic work and a bone graft in the near future.    The surgery went well, but she was in some pain afterward.   I relished the after-surgery experience with my daughter for those few days because she was very snuggly and receptive of affection (Scott often refers to Jade as our little border-collie because she is constantly perceptive and curious to the things in her environment, and always moving.  It was painful for her to talk too, and temporary quietness was kind of a treasure also for our usual chatterbox!)

I recall one little "a-ha" moment I had, when I was blending a smoothie for Jade for lunch the day after her surgery.   Sometimes when gimping around the kitchen I can be a klutz (especially on a tough pain day), and things are a little more effort-ful.  Well, I proceeded to knock the dang smoothie onto the floor....spewing strawberry-banana goop everywhere.   Jade watched from the kitchen table as I mumbled under my breath, limping over to the kitchen sink to fetch a washcloth and soap, then fumbling down to the floor to clean the scattered mess I had created.  

Later that day, I was upstairs in the bathroom hand-washing my gorgous compression stocking (which I still need to wear on my injured leg) in the sink.    Jade hoisted herself up onto the vanity and asked "Can I help you mom?"  "No thanks Jade...."  I responded...."the water is really cold, and I would never expect you to wash out my ugly compression socks!"  Her response to me was amazing:  "Well, you helped me today when you were hurting....I just thought I would offer to help you now."   At that moment my eyes became teary, just knowing the depth of compassion in my daughter.....and I thanked her for being so caring.   I told her that this is an incredible gift and that it is very special, especially if she is this caring with everybody.

.....the more mindful I become, the more able I am to embrace these moments.   The more I take time to rest in the present, the more grateful I am for these experiences....especially in those times where it is easy to lose focus of what is important.           



    

 

Anniversary Gratitude...to Scott, with Love

Last year on American Idol, there was a young woman who sang a remake of the '80's song:  I Wanna Know What Love Is by Foreigner.   Scott and I were delighted that our daughter took to the song (although not-so-much when she requested to play it repeatedly.)  When we blasted it in the car one time, Scott and I looked at each other and remarked about the meaning behind the words, particularly in lieu of how our lives have unfolded:

I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me.....

Now this mountain I must climb
Feels like a world upon my shoulders
And through the clouds I see love shine
It keeps me warm as life grows colder

In my life there's been heartache and pain
I don't know if I can face it again
Can't stop now, I've traveled so far
To change this lonely life....

I'm not gonna lie.  This year has been very, very challenging physically and emotionally.  I think I have shed more tears this year than I have in my entire lifetime.    Yes, there have been some days where I'd wondered if there was any more I could take....between dealing with physical pain, limitations, setbacks, and parenting a very challenging child.    We've taken it one. day. at. a. time.  Still are, in fact.  

.... recently I had reason to recall a significant relationship I had in college....one in which the guy broke up with me.  His reasoning?  "Chris, I want to be needed.  I don't feel like you really need me...you're way too independent and that's not what I want."   Of course, I didn't get it.   I mean, doesn't every man want a tough-minded, independent woman?   Apparently not.   It was a difficult holiday that year, being newly single and secretly wondering what was wrong with me. 

Scott and I both spent many years getting our "adventure seeking" out of our systems before getting married on February 15, 2005, (or maybe more accurately, we decided to blend our seeking of adventure into the building of a quirky, adventurous family.). We were drawn together through the bond of trust and the sharing of a very odd sense of humor.....one that has since, helped us to keep things light on some pretty dark days.   We said "I do" eight years ago....today.  

....and words cannot describe how immensely grateful I am that we did.  

Wanna know why?   Check our our e-mail conversation yesterday.....

-----Original Message-----
Sent: February 14th, 201
To: 'Chris Prange-Morgan'
Subject: RE:

Chris – your passion for the kids and rising above your accident are a constant amazement to me. You don’t need to do anything except what you are already doing and that is gift enough.

From: Chris  [mailto:]
Sent: Thursday, February 14, 2013
 BTW, we need to talk about anniversary...not sure I'm comfortable spending $ to buy you something, as I'm not earning anything and there is nothing pressing that you want / need. (I don't feel the need to buy something to show I love you either!). I just can't see gimping around a store to "buy" something...know what I mean?  Ugh...
 Need I say more?

I never thought I would say this.  It goes against everything I ever thought I was and am......

Scott honey, I need you.   You keep me smiling and help me to remember the joy and laughter in my life.   You help to fuel my passions, and embrace life as a partner that I can hold on to.   You help me to be strong when I am not feeling strong, and you are tender in the times I most need it.   You've held me when I have cried....cried with me even, and challenged me when I have most needed it.  You appreciate me for who I am, and understand so much of who I am.   I am so amazingly thankful to have you in my life.   

On Sunday, at my folks' church group, Scott shared that he has been the happiest he has ever been since having me in his life.  (I know, can you believe it?!   I asked if he had been smoking crack!!)  I held onto that comment as I drove home earlier this week, having had a really tough pain-day.  Even though we joked about his comment at the time, it meant the world to me on Tuesday on that drive home.  It was my strong-hold. 

 

 Happy Anniversary Honey.   I love you.

(PS:  Don't go thinkin' you're all perfect or anything....that's for a later post.  ;)  Lol!) 

 

Tilling the Soil (with lots of yuck)

I haven't posted here in a while.   Call it writer's block.   Or, call it a case of the blues.  I try to kick myself in the pants when I'm in this space....which usually gets me going.  That method has not worked this time around....  I can't busy myself in the way I would like to (due to restrictions and weather)

A friend of mine messaged me shortly after my last blog post, asking:  I read your post... but how ARE you? (Thanks H.L).  So I thought an update was in order.  Here goes.

 Honestly, this go-around has been really tough.   I'm usually more inclined to share the good stuff, which I know is not uncommon (we all would rather share the happy and uplifting stuff). I'd venture to say that emotionally it is even harder right now than it had been a year ago, because I'm looking at issues with the word chronic thrown in...which has much more of a grinding nature to it.  I know there is another surgery in my future to fix my ankle.....and I'm waiting with baited-breath for that (I can't wait to walk without pain again!).  My back is another issue....

I'm recalling a conversation I had with my first physical therapist last June....when I attempted to pin down some pretty specific answers, trying to capitalize on her 20-something years of experience.   She said something like "Chris, in all of my years of doing this work, I'd be lying if I told you that you would not have some issues of chronic pain.   I'm not saying that you will not have some good days and some bad days, but from what I know about the severity of your injuries...particularly your pelvic/sacral fracture...I just think it would be very unlikely if you did not have some chronic issues to a certain degree."   I remember my heart sinking to my feet that day, and while I was dead-set on proving those things to be untrue, I am thankful for her honesty.  My nature is to fight against things that I don't like, or those things which I would prefer to change.   I'm damn hard-headed that way and will always go down fighting.    Pain is quite a humbler that way. Some days it kicks my butt, and I am trying to learn from it.

You see, there's this problem called gravity....It makes standing for longer than 10-15 minutes painful for my lower back (although intervals of rest and activity definitely help).  As of this point, the several cortisone injections and lumbar radio frequency ablation have proven unsuccessful, unfortunately.  My orthopod won't allow chiropractic manipulation, and physical therapy has been minimally helpful.    I'm finding that there's kind of a "trial and error" approach to these things which is frustrating.  

There is this nifty measure called a "perceived pain scale" (0=no pain, 10=unbearable pain), and I usually hang out somewhere between 4-5 when I'm up and standing for an extended period (sans meds).   Laying down usually brings a 0-2 rating, and sitting brings a 2-3.   The great thing about exercise is that it combats stiffness and lifts the spirit.....so I've been riding the stationary bike and trying to do what I can to keep up my strength.   STILL, mindset is huge....and winter is tough for most folks.   I'm finding that it is extra hard for me this year.

One of the cool things about being laid up however, has been the luxury of being able to read some helpful books:   The Places That Scare You, and When Things Fall Apart...both by Pema Chodron.   I find great encouragement in the idea of residing with pain in order to cultivate greater compassion.....a concept called Tonglen (or cultivating loving-kindness).  These books, and others, have helped me to realize how important it is to reach out and share our struggles for the purpose of knowing that we are not alone.   I know that I have a hard time admitting things are difficult, mostly because I believe that this is not what folks want to hear.   But then there's a little voice inside of my head that tells me that if I admit these things, maybe other folks would feel free to admit their difficulties too.   We live in the age of Facebook and Instagram, where image is important, I know.  But there is usually a much deeper reality...

....during many of my follow-up appointments throughout the past six months or so, I became increasingly compelled to ask the question of my doctors and treatment providers:  "Why is there a lack of emotional / spiritual support for survivors of trauma once they leave the hospital?   Once we are 'put back together', why is it assumed that your work is done?"   Overwhelmingly the response has been a graceful acknowledgment of this being an area for needed growth (emotional/spiritual/peer support...for patients and caregivers).   Knowing first-hand about the physical / emotional experience AND looking at the realities through the lens of social work and ministry, I thought, why not till this soil a bit?  It is something I wholeheartedly believe in, and something to keep me going when times are tough.  I guess if the pain-thing has to be a part of my life, I might-as-well find a use for it....I know I am not the only one facing these struggles.

Two weeks ago, five of us met at Froedtert Hospital (the trauma program manager, psychologist, folks from spiritual services and myself) to discuss how we can begin developing a trauma survivor / peer-support type of network.  I also spoke with the Director of the National Trauma Survivor Network and had a delightful, encouraging conversation about lots of possibilities.    We will meet again at the end of February as a working-group to begin laying the ground-work for the program, with more patient involvement, hopefully!  Send your prayers and good energy our way...  

Any time we add the moisture and warmth of compassion,
it will automatically expand.   
If we keep it in the freezer, however,
nothing happens.
                (The Places That Scare You...a Guide to Fearlessness In Difficult Times.  Pema Chodron)

2013...A Toast to Gratitude and Inspiration

I have always felt that DOing vs. BEing is a delicate balance.  It requires a sort of emotional tightrope walk between being active and contemplative....and usually, if given the choice, I much prefer the active route.   Not being able to do a heck of a lot (while keeping my foot up in the air) drives me batty.  

It can be tempting to focus on limitations....(eg. not being able to drive really sucks.   It does!)....or worry about outcomes (I am sweating my appt tomorrow because there's an area on my leg that concerns me.   I can't do anything about it except wait.  Waiting sucks too, and it is a reminder of the fear and loss associated with the past year).   Then I can focus on goals....which I do.  A lot.  I can't wait to get back to the gym, and to plan for lots of adventures for the summer and (hopefully) spring break. 

When I shift to my gratitude mode, I think about friends and family, the beauty of nature, and ability.   Because, yes.....ability is relative, and attitude is huge.

A few weeks ago I met two amazing people.   The thing is, neither of them think of themselves as amazing....but they are.  

I met both of them while doing volunteer visits at the hospital I spent lots of time at last winter.  During these visits, I got around using a knee walker , which I used grudgingly because I don't want my "limitation" to be obvious.

 As I rolled into the room of the first woman I visited, she immediately commented on my "cute blue scooter".   I explained to her why I was using it, then asked how she was doing (eluding to the information that I had on my daily census report...which had not been updated yet for that day).   She spoke of how her medical team had decided earlier that day to amputate her leg because of nagging circulatory complications.   As I secretly gasped inwardly to myself....realizing that this "cute scooter" of mine may have symbolized a phase in her loss process....I needed to then sigh, as she felt comfortable enough to throw the blankets off of her leg to expose her newly healing stump.   "Wow" I asked...."how has this journey been for you?"  She spoke of feeling contentment because of now being able to move on emotionally, as there were so many aspects of her healing journey that were up in the air until that point.   She continued to speak of all the people in her life that she has come to rely on and accept help from.....even joking about some of the silly and uncomfortable circumstances she had found herself in.  As I listened, I became increasingly thankful for our brief connection, and thanked her for sharing her courage and her strength.   As we ended our visit, she asked if I would pray with her.   I obliged (honestly I have always felt a little uncomfortable praying aloud with folks.   I know, its odd....I think it is an old Catholic thing.).   As I walked down the hall, I thought to myself...This woman has no idea how amazing she is.  I wish other people could know her.          

 Later that morning, I visited with a man who had had his larynx removed for a reason I cannot remember.   Earlier in that week, he was able to speak....now he relied on a device to insert into his trachea to make sound.   This man had the most amazing smile and hearty sense of humor.  (We all have our ways of coping....some folks cry, some folks see counselors, some folks try to stay busy, others use humor.)   I could tell this guy was a favorite on the floor because of his amazing attitude and ability to joke around.  When I spoke with the family member sitting in the room with him, she shook her head and commented about how often we wish our loved ones would "just shut up"....and we mean that.   When they are not able to speak anymore, that phrase takes on a whole new meaning.  I do not know what lies ahead for this guy....but I do know that I was inspired.  Tomorrow may be a rough day for him....or the next day, or the next day.  But for that moment I was thankful....I AM thankful for our meeting and for his courage. 

There are SO many amazing people....quietly courageous, gently overcoming, and brave.   They squeeze the essence out of life in the same way most of us squeeze the pulp out of an orange.  

So in the new year, I quietly toast to my overcoming friends.  I am humbled and grateful for all of you.   And I say in spirit to all folks struggling with whatever it is that is difficult for you.....breathe....hang on....keep calm and Climb on!         

A look toward the Holidays; the Year in Review

It is the time of year when we begin to start thinking about what to write in our Christmas cards.   Sometimes we include a letter (still not sure if we will do that...)  As I look back over the past year, I am overwhelmed.   It has been incredibly difficult, and amazingly wonderful....all at the same time.  It seems odd, doesn't it?

November 30th marked the one-year "anniversary" of my fall.   I am pretty strong-willed, so much of the past year has been my trying to work my butt off (actually it would be more like working my butt on because after 4 months of bed rest and weight-bearing restrictions w/ my lower right side, my gluteal muscles [and entire right leg]  totally atrophied...I looked pretty pathetic).    Surprisingly, I had a window of time this summer where my ankle pain was starting to decrease for a while, but toward the end of August that changed.  The grinding and pain in my ankle was confirmed with an x-ray showing significant degeneration of the joint.   Sigh....as is the case with most traumatic injury, recovery often becomes a long-range goal, with lots of inconvenient detours.        

I really had not sat down and tallied all of my surgeries, but just today I realized that I am getting ready for surgeries # 10 (hardware removal Dec. 19th) and 11 (ankle replacement, in roughly three months), in addition to an L4 / L5 medial branch Radiofrequency Ablation (RFA)....although that procedure freaks me out.   Still, I am thankful that the worst part is behind me.

Toward mid-summer, I mentioned to Scott that I need to be somewhere beautiful, with good people and good energy (and hopefully climbing) on the "year anniversary" day. I needed a plan with something to look forward to (our first-ever mini-vacation without the kids), to celebrate getting through the tough year....so we planned a long-weekend trip to Red Rock Canyon outside of Vegas. What began as an envisioned "moving on" trip morphed into more of a "last hurrah" excursion....before getting emotionally and physically ready for another winter of being laid-up. The trip was wonderful in every respect...

 

 

 ....and although it was a beautiful, magical experience, there was a mix of sadness, wonder and gratitude woven through it.    The desert seems to have a way of speaking to that reality, with its rugged terrain, parched colorful rock-earth and sprigs of new life sprinkled through its landscape.   To inhale all of this beauty, with my life-long partner / dedicated, goofy husband by my side.... was simply amazing.   It was enough of a gentle nudge to keep me going through the next few somewhat arduous months.    Oh yeah....and then coming home to the hoodlums (who did so well staying with Nai Nai), all excited for the holidays made the experience extra special. 

 

... so we are moving on toward the holidays.  What a vast improvement over last year!  I had been discharged from the hospital on Christmas Eve-day after spending four nights for ankle-reconstruction surgery.  At home, I had a bed in the living room with the Christmas tree at my feet.  (I tried to stay up to see Santa, but with all the pain meds, I think I slept through his visit!)   As I look back over the year, I have become much more acutely aware of the blessings which have arisen as a result of the difficulty experienced throughout the year.  

• I have learned how to receive....and to be accepting of care (I was horrible at this before!) 
• My/our friendships have deepened and become much richer.  There are really no words to express how important this has been in my life.   (and ya'll know who you are!)
• I have slowed down enough to see the little increments of growth in my children, and am amazed at their resilience.   Both of the kids have thrived dispite the difficulties of this past year.
• I have developed a greater appreciation for natural beauty (because I have slowed down and taken the time to notice...more than usual), and have the desire to drink it all in as much as I can.  This has spilled into a natural sense of wonder in my children.
• I have become more aware of the journey of other folks who struggle.   As part of my own self-imposed spiritual "therapy" I have been volunteering in the spiritual care department at Froedtert Hospital, and have spent time with many, many folks in their pain and anguish.   This experience has helped me to keep things in perspective, and has truly been a gift.   It has helped me to move on through many-a-day where I would have thought of throwing-in-the-towel (only to have a heart-felt connection with another person who validates the need to keep on, keeping on.)  
• I am once again, truly grateful for my husband and family.  This realization has been a constant. 
• I have learned how to live in the moment...and to savor it. 

Late last week I received a letter in the mail informing me that I had been nominated for a particular community service award at my alma-mater.  I couldn't help thinking to myself, "Really? Me???" (like, do they have the right person?)  I have never been nominated for such award, even when I was working out in the trenches of social service provision.   How ironic that now....(after having taken a five-year hiatus from my career to raise two children and essentially having no choice but to remain home while my son received in-home therapy), feeling as if this has been one of the worst years of my life, that I would even be considered for such a nomination.   I have felt unable to give much at all this year.   I have been mostly a receiver of help.

I guess all I've tried to do is get through, not give up, and keep believing.   That's it.   There really is no alternative, is there?   Apparently tenacity must count for something.

 

Blessings...behind the scars

Every day I try to look for little blessings....little moments of gratitude in the ordinariness of life.   When faced with physical challenges or differences however, it can often be very tempting to focus on the negative aspect of our scars.   We tend to perceive these things as limitations, imperfections, and deeply personal flaws.  Most of the time these things certainly don't feel like blessings at all.  And while the dance of cursing and embracing our physical differences is an ever-evolving process (one which we fine-tune as we become hopefully more and more accepting) we know that it IS an ongoing, oddly choreographed interpersonal dance.   It's one that we'd rather not take the lead in....but we have to.  

Most of us can attest that children can be wonderfully adept in pointing out physical differences.  They blurt out what they are thinking because they have not yet developed the pleasantry filter which most of us adults operate out of. (For most of us parents, these are the moments where we cover our faces and apologize to the unfortunate recipient of the comment!)  Children can also be good examples however, in helping us to move beyond these differences.   Their fleeting attention just does not remain focused on anything for too long...something is noticed and voiced, then they're off to chasing the next butterfly that flutters along.     

 

When I recall the moment I'd learned that I would need a "limb preserving" tissue-transfer (something called a free flap) on my lower leg....the experience was filled with mixed emotion.   The complex, comminuted fracture of my tibia which I'd suffered was severe enough to cause extensive soft-tissue damage, requiring a plastic surgeon to move a 13 inch long segment of skin from a "donor site" on my thigh to cover the area on my lower limb which was becoming necrotic.   I did not have a choice....have the surgery, or sadly, lose that part of the limb.   Fully acknowledging that this measure was being done to save my leg, for some reason I still had difficulty knowing that my appearance would be disfigured.   While I had some fear that the procedure would not be successful (as can be the case at times), I also grieved (and still grieve) the fact that my leg will never look "normal" again.  And while I was grateful that the procedure was successful--it saved my limb, I knew deeply that my reality had changed.  Not only did my leg not function in the same way, it also looked different, and would now be the object of many stares and questions.  

 

As is frequently the case with life's unique issues, children often do not hesitate in frankly probing into life's often uncomfortable quirkiness.   One morning several months into my healing journey, my six year old daughter (who was born with a significant bilateral cleft lip and palate) climbed into bed with me and asked if she could touch the freeflap on my leg.   "Sure Jade..." I said, "you can touch it, but I won't feel anything. That area, and the area that the doctors took the skin from on my thigh are totally numb...I have no feeling there."   "Really?? Can you feel this?" she asked.  "No" I said.  "What about this?"   "No...I can't feel that either" I said.   "Hey...." Jade exclaimed, "Maybe we can play a game....you close your eyes, and I'll touch your leg somewhere, and you tell me if you feel it or not?!"   We continued to chuckle and laugh as we chatted about the silliness of the appearance, yet the importance of the function of our scars.  Eventually this little ritual evolved into a game that we call "Now you feel it, now you don't."   

 

As I smile and ponder the questions which naturally arose from my daughter's inquisitiveness, I am grateful for her innocent curiosity and willingness to risk reaching out and connecting over something so basic, vulnerable and raw.  I could have said, "No Jade, I would rather that you didn't...I'm kind of embarrassed..." but that would have kept us from connecting in a way that would also be embracing of her scars and felt imperfections.   It became an opportunity for deep, magical connection and shared growth....a sacred moment. 

 

The real human game of "Now you feel it, now you don't" is something that we all experience in our dance with emotional vulnerability.   Often I think that we "grown-ups" are afraid to take the risk of reaching out to others because we are fearful that folks are somehow too fragile.  Sometimes, we are.  We are also afraid that people just might close the door on our attempts at connection...this can reinforce or feeling of isolation.   However, we need to take those risks or we will never know if that magical, holy connection is even possible.  Of course, we can dance around the "real" stuff with all sorts of pleasantries and avoid the kind of stuff which might expose our physical or emotional scars.   But unless we are willing to take the risk of going there...to those emotionally risky, raw, and potentially embarrassing places....we will continue to live with a felt inadequacy in who we are.  We deserve more.  

 

I wish there was some magical way we could snap our fingers and all suddenly feel okay....despite our various physical and emotional scars.  But just as my daughter will continue to have to answer questions about her cleft by other curious children on the bus (they are there... I cannot shield her from those questions), and I will continually need to endure folks' curious glances at my oddities of my leg, I know that the best way to be present in this world of ours is to take the risk of reaching out--to know that we are not alone.  

 

We all have these places within ourselves where deep, meaningful connection is possible. Sometimes, we just need a little help in getting there...... 

 

....and just as I am in the process of accepting my own physical differences, I am comforted by knowing that I am not alone.   My resilient little now-seven-year-old has helped me to begin embracing my own unique self.   I relish that magic of connection....I want to continue the dance....the dance of pure, imperfect, sacred imperfection.  

 

We are here to share in all of our humanity, (even the undesirable stuff) because that is where the magic happens.   

 

 

Quiet Growing

I always marvel at how the universe somehow seems to know our deepest longings, even though I want to demand knowledge of outcome and certainty.   This is our human condition, really.  As I ponder this reality I am comforted by folks who articulate it wonderfully.   Folks such as Joanna Macy, who was featured in an interview recently here:  Let This Darkness be a Bell Tower , and here:

Sometimes, Wow is all I can say.

As I was dusting this morning (I tend to be ADHD like when I am cleaning) I came across a binder with some poetry I had written a long time ago. I am somehow surprised by the cyclical nature of these ponderings....

Quiet Growing

A lingering stillness
waiting...
The hush of questions
unanswered,
entangled in inhibition...
forming roots of emancipation
within my heart-soil...
wrestling and bellowing
through the stuff of preoccupation
and stagnancy.
A tiny, delicate bud emerges here,
amidst the confusion and uncertainty...
returning me to the center
where there is truth in stillness...
enfleshing the stagnancy.
Allowing the stillness to exist in this space
and embracing it...
incarnating old questions
in the form of new, emerging,
ever-evolving
truth.

(CLP 2/24/97)

Daring Greatly....I'm In.

Truth be told, I've been avoiding reading this book.  There's something daunting about reading something written by another social worker, at the top of her game (the author was recently featured on the Katie Couric show after a wave of interest in her work), talking on the topic of vulnerability.   I wondered how this work can be written in the midst of experiencing great success....to me it didn't make sense.   In my own convoluted way, I likened it to a doctor encouraging patients to quit smoking, then going home after his workday to light up a cigarette.    My "greater self" (what I'd like to call it) knows that this is a piss-poor attitude.   I've told myself that I should be more open.   "It has been a really tough year," I thought, "what kind of advice can I learn about 'daring', when in actuality holding on has been the best I could do courage-wise?"  In the end my "greater self" talked my poor attitude into getting my arsh to the bookstore to buy a copy.    (Discovering that it was only out in hardcover almost gave me another "out."   I sucked it up, and rationalized buying it because I found out I could purchase it at the same time I bought my pumpkin-spice latte.   Dang...)  

To say that it has been a tough year for us is an understatement.   Heck, it has been a tough four years.   It is hard to be honest in writing a post without seeming blaming...but staying home with a child with special needs has been no picnic.   That said, I wouldn't have done it any other way.   Using my advocating skills paid off for my little one, and my pavement-pounding was worthwhile.   As all moms would agree, we just do what we do.   No fame, no glory.   Just the benefit of knowing that we have some input in the development of our little beings is its own reward, and usually it falls into the "daily grind" category.

Nonetheless, the experience has taken a toll on me emotionally...all in an attempt to be a "super-mom".   It led me to forget something important at a critical time where I should have been more concerned about my own safety (not self-loathing here....we all do this from time-to-time.  My screw up just had majorly crappy consequences...I'm using myself as an example of what not to do.).   So I've spent this year nursing myself back to health, and while I look ahead to more medical procedures and surgeries, I am comforted by the fact that the worst is over with.   Survival has been its own reward, so to speak.  I guess now is the time where I get to look back and breathe a sigh of relief.   Well, Kinda.    Trauma has a strange way of rearing its ugly head as a reminder to brace for the worst because one never knows what kind of dire news is lurking around the corner.   (The reality of trauma initially entered our home with Kai's history of orphanage neglect [he was the poster-child for disconnection] and continues to needle its way in through teasing out what a "new normal" will look and feel like for me physically.)  It is, and has been a very odd journey.  I need to believe it has some purpose though....that is why I blog.

So...the topic of this post:  Daring Greatly.   It has to do with this vulnerability thing.   I jokingly tell myself that this year has made me the queen of vulnerability.  My mother and husband still laugh about the time they were both forced to wipe my butt after I suffered a bout of explosive diarrhea while wearing external fixator (frame) screwed into my pelvis.  (I could not physically turn or twist in bed...it was really ugly.)   I've got really ugly scars in a lot of places, and my leg looks funky.  I have weakness on my right side from my fused SI joint down to my gimpy ankle and foot, and I still have pretty regular pain.  To look back over the past year is to take in so much of how difficult things were....most of which I have filed away deep in the back of my memory bank.   Still, as I sit and reflect....I am amazed that we continue to shakily arise from the ashes.  We do arise, but it is always shaky--this new "becoming" journey.   It feels very fragile and raw.

Here's the kicker though.  To keep going....in a society that does not fully understand the reality of what has been faced, and overcome (to some degree), and survived....is excruciatingly difficult.  It is extremely isolating.    We want the world....our doctors, our friends, our family....to believe that we have succeeded at the "getting better" thing. That we are now back to our same-old self.  Strong.    I want folks to believe that....but I also don't, because it is not entirely accurate.  I am not the same.   It is an odd conundrum.     Even as I type this....there is a little voice in the back of my head that tells me "Chris, get over yourself.  How long are you gonna go on about this stuff? Who really wants to hear it anymore...enough already!"   Sometimes....I can do it. I feel strong, Life is good.   But in those times that I can't... those times where I am grieving the old "me" or hurting (which is often the case), I am comforted by the realization that this is exactly what makes me human and fully alive.  (NOTE:  I said "comforted,"  not encouraged or embracing of.)  This ugly, painful, wretched, messy human existence...which can also be intriguing and beautiful, is an invitation to delve more deeply into relationship with one another...through shared vulnerability. 

Admittedly, for me it is still a love-hate relationship.  Can't I just have the old me back...please?!?  I knew her much better.  She was much more predictable and hearty.  

Who would ever have thought that I would literally have to fall 27 feet and break 10 bones to experience my own broken-ness?  Seriously?  (Even then, I'd be lying if I wouldn't acknowledge the pride I felt when I let my orthopod [the guy who put me back together] know that I am climbing again.   Yes...I am, but not without some degree of pain and frustration.  Not without countless daily reminders of trauma.).  It goes along with my need to please...and to prove I am uber-worthy.   (Folks who saw my fall on that day tell me I tried to get up...waving to let folks know I was okay.  Obviously I was more than NOT okay.)  Still...most people (myself included) would rather know success than struggle,  strength than weakness.  We like things wrapped up and tidy, preferably with labels such as "cured, " "better" or "success." We long for and relish journeys with happy endings. 

One of the biggest concerns I had about doing the TV interview last week about my son was that folks might get the illusion that somehow Kai was "cured" of his issues (which are not just autism)....that now we are blissfully living in the mode of happily-ever-after.  We actually do continue to work on things on a day-by-day basis.  Progress waxes and wanes, and it can be exhausting.  Most importantly, I was concerned about the families out there who continue to deal with insurmountable struggle....who may have seen Kai's story and truly wonder if they will ever get to a point of peace or acceptance of their ordeal.   While I am a huge proponent of early intervention and am very proud of my son, I still wanted to convey the true reality of parenting a challenging child.   I think some of this may have come through...but moreover, the "success" theme permeated the interview.   Don't get me wrong.  I am grateful.   I just don't want to forget about the other parents out there who continue to struggle. 

If I sit long enough and ponder, I understand what is meant by the words Brene' Brown writes in her book:  To believe vulnerability is weakness is to believe that feeling is weakness.  To foreclose on our emotional life out of fear that the costs will be too high is to walk away from the very thing that gives purpose and meaning to life.  Although I am much more comfortable being that "strong" person...that tough gal defying the odds, so-to-speak (because it is all relative anyway), I also know that what is more important is that I do not lose focus of the struggle.  Compassion and empathy are pretty decent byproducts of having had some pretty tough shit happen in one's life, aren't they?    

Brene points out that the word "vulnerability" is derived from the Latin word vulnerare, meaning to wound.  Because my physical recovering journey has necessarily been a spiritual one, I have been grasping for quotes from wise-sages and spiritual folks to help me through it.   Serendipitously, one that I found recently is this quote from Rumi:                                                                           
                                                                                                    (Courtesy of Prana)
Wow.  If I can remember this....If I can embrace and live this truth, then my heart is happy.   If I can live with the tension of letting go while embracing a degree of my own broken-ness for the sake of connecting with other broken-people (which is everyone, really), then life has found its purpose.

As I walk from the parking structure across the skywalk to the clinics building at the hospital I spent (and continue to spend) a lot of time at, I am struck by a series of large glossy hanging posters of former patients.  They are all success stories, complete with quotes reflecting the gratitude they feel for the awesome care they recieved while in the hospital.    When I look very closely into the eyes of those folks behind the smiling faces, I wonder about their deeper stories.   Reality is usually a little more complex.... but depth usually does not get top billing.  

SO....we breathe, we lean into the discomfort of the unknown, and we take the risk of sharing our stories.   We begin to embrace the common ground of humanity in all of its messyness and unpredictability.  I guess this is daring greatly.  I'm in.

Our Kiddo...

As I mentioned in an earlier post, this interview was to take place.   Well, here it is:  

  

Thanks for watching!

Sincerely,                     
            Ms. Couch Potato   :)

Surgery....

My post today is of the simple "update" variety.  

You know, this whole "body" thing sure is humbling.   I think about the conversations among the cute little old ladies in the locker room at the YMCA after their water aerobics classes, and they're always talking about aches and pains.  

I had to chuckle to myself as one woman commented to another as she limped out of the locker room this morning: "Aw Mildred...just keep taking it one day at a time honey" (honey...isn't that cute? Mildred is a cute little lady).   Anyway, those words have been sort of a mantra in our home as well.

I truly had not thought that I'd be looking ahead at the next several months or year in anticipation of more surgeries.  I figured that by one year out (from last Nov 30th), I'd be on my way to "moving on" with a career and other plans.   Hmmm...looks like this is where I back up and sigh, because I guess I don't have as much control over things as I'd like.   Guess I need to suck it up and deal hey?   There's really no alternative....short of putting life "on hold" and perfecting my cursing technique.

So the upshot is that I've got a few more surgeries to look forward to.   Mid-November I'll see the plastic surgeon who will "de-bulk" the freeflap (tissue transfer) on my ankle.   I predicted this one...and it will be pretty straightforward and outpatient.   In mid-December I will have the hardware taken out of my ankle....not that the hardware is giving me trouble....it's to prepare for additional surgeries.   As of now, the foot-and-ankle specialist isn't able to know what is possible surgery-wise because of all the hardware on my tibia.   What we do know is that that I have bone-on-bone grinding....post-traumatic arthritis, which will not automatically improve on its own.   I've kind-of had a gut feeling this was the case, even though I tried to believe that the pain I've been experiencing is still from the healing process.  Well, its more than that.

SO...after hardware removal I've got two weeks of casting (non-weight-bearing), 4-6 weeks of wearing a walking boot (no driving  :(  ), and three months of taking it really easy on the ankle.   No eliptical, no running (couldn't do that anyway), no climbing or twisting...as the screw holes in my tibia need to fill in with bone-material to become strong enough again.

...initially, a few weeks ago when my trauma surgeon shared what he had seen on the x-ray and predicted what the ensuing procedures would look like, I was like..."Hey, do you have any idea what it has taken to get to where I am now physically?"  I shared how I'd worked really hard after four months of bedrest and right-sided leg atrophy (I could not bear weight on that side, and the tissue taken from my right quad rendered it pathetically skinny as well.  I had no butt either....seriously.  My healing pelvic fracture and the necessity of keeping my right leg elevated through all of last year's surgeries precluded me from doing any form of exercise from my bed, other than gluteal squeezes.)  I've finally gotten my butt back, along with a great deal of my strength.... and am back to doing the things I love...with pain, but doing them anyway.

Well, here's the deal.   Once the hardware comes out, we are hoping that something arthroscopic can be done more conservatively (there's a chunk of bone on the back right-side of my tibia which couldn't be replaced...as you can see on the pic.  This is the area that is painful, and the surgeon is hoping that maybe he can "clean out" the joint space to help with pain.  We'll see after the hardware comes out...

Ultimately however, we are preparing for an Ankle Replacement surgery . Yes...they do these!  The GOOD news is:

• I get to choose when I have it done (pain and life-events will dictate this.....Need to play it by ear.)
• My doc is NOT recommending a fusion.  Ultimately, I am not an ideal candidate for a replacement surgery, but because fusion would essentially immobilize the joint completely, within seven years or so the adjacent joints would become arthritic....which would be more disabling.  Fusion is kind of an "end of the road" surgery (so is replacement), but at least if I "treat the joint well" after replacement (in the words of my surgeon....which essentially means no running or high-impact activity), it will last longer.   AND, with the anticipated advances in hardware technology, if I needed another replacement as I age, it would still be doable.   
• With a replacement, I can still CLIMB.  Hanging out on footholds will not compromise the joint, as constant impact (such as running or jumping) might. 
• The purpose of the replacement will be to alleviate the pain I've been having.   Walking pain-free will be nice.
• We get to have my folks stay with us again (wink, wink) to help out with the kids and stuff...My folks are always good for comic relief. 
• My medical team is amazing (my new foot/ankle doc thinks climbing is cool!)
• I keep realizing that the worst part is OVER with....these are all just bumps in the road.

The BAD news is:

• I need to make this choice anyway... not fun.  
• More surgery....blech.  More hospital stay, more lovenox (blood thinner) shots....(which I hate!) to prevent clots.  I did have a DVT in my popliteal just below the knee, so this part is critical, I know....still hate it. 
• It is likely that I will need more than one replacement in my lifetime, since I am pretty young to have one of these.   (But who knows?   They told my dad that he'd get ten years from his knee replacement back-in-the-day, and he's still going strong at 11+ years.)
• I'll never be able to run, or jump.   This means I probably shouldn't coach my kids' soccer teams unless I get a megaphone and hang out on the sidelines. (what I miss most about running though, is that I can't run to the car when it is pouring rain!)  I probably shouldn't boulder either, as that would require landing on my feet. 
• More Physical therapy, casting, restrictions, limitations.   Having to rely on others to get around, etc.  None of that is fun....again. 
• NOT BEING ABLE to MOVE ON....that's probably the toughest part.  Planning life around surgeries sucks.

(There's other stuff going on with my back and SI joint getting worked out with my spinecare doc too, but I won't go into detail on that...)

Here's the exciting thing....Scott and I are going out to Red Rock Canyon toward the end of November, kind of as a celebratory endeavor for getting through the year....and YES, we're climbing.  We're pretty psyched....Red Rocks is an awesome climbing mecca, and we plan to meet up w/ some friends there.   It gives me / us something to work toward and look forward to, especially since I'll need to take it easy for several months again.   This will be "round two" of gimping through the holidays....  luckily the holidays will be a good distraction.

Maybe, just maybe we'll be up and able to get in a climbing trip to Red River Gorge in KY by April....our fingers are crossed.  If not, there will be a good reason...but it gives us something to shoot (and train) for.   Can't lay around and mope....

Oscar the Counselor Cat

This is Oscar.......  

When Oscar was 7 months old, his little paw was slammed in the door when a gust of wind came.    The vet told us that he broke his leg on the growth plate...that he may be a little sore from time to time as he grows, but otherwise, once healed, Oscar would be a typical healthy kitty.

Scott decided call Oscar "the little counselor cat" ever since he noticed how "in tune" with me Oscar was while I recovered at home after my climbing fall.   He was an amazing little buddy.    Kai even decided to play doctor with Oscar on occasion, and Oscar was happy to oblige.  



....little did Oscar know, but he was helping Kai to learn age-appropriate play skills.   Oscar was also helping me to stay in the moment, which is hard sometimes, especially with lots of worries and concerns about future and such. 

Surprisingly, Kai really gravitates toward Oscar....we can find him often scratching him under the chin or on his head, eliciting a little purrrr.    

I'll never forget one day a few months ago, on a rainy, dreary day...sort of like today, while I had a nice warm soak in the tub (always feels good when the body is sore.).   It was one of those really emotional "am I always going to feel this way?"  kinds of days, and I let my tears drip into the sudsy bath water.   Wouldn't cha know it....guess who came to bring comfort, purring his way around the corner and up to the edge of the bathtub, looking me directly in the eye and uttering a little squeaky meow (without the m.  Oscar's squeak is a little odd).  It was as if he had some sort of inclination, from downstairs or wherever he was, that I needed a reminder to just be and literally soak in the moment.   Pets are wonderful in that way.    

I've often wondered if Oscar is more in tune because he intuitively knows about the little "ouches" of life, yeah....from his own early experience.   Call me an odd-ball, but I really believe that we have a lot to learn from our four-legged furry friends.   Sometimes they just "get" it, while we humanoids frequently need to be whopped upside the head....to slow down, connect, and be.  

Today I am thankful for my furry friends (and my human ones too), for helping me to embrace the now.  An ever-present gift.

The CRUX...climbing as metaphor

In climbing, the crux is considered the most difficult part of a route.    A route can have a sustained crux, in which the whole climb is relatively challenging, or one particular part where getting past it can be very difficult.  

What I love about the sport is the fact that it engages your whole self....mind, body and spirit.    It challenges you to creatively press on, acknowledging that one can quit at any time....That is, unless you commit to keep going.    To look back and know that you pressed on and made it is an amazing feeling.    

Lots of people seem to think that climbing is about the thrill.   For me and a lot of other folks, it isn't.  I find that it is a holistic and creative challenge--microcosmic metaphor for life itself.   Life offers us lots of cruxes, and we can either breathe, shake out our arms and keep pressing on, or quit.  We can request for our belayer (or our support folks) to seriously cut us some slack, hold us up, or let us go.   

I love the challenge of climbing.   I love what it teaches our children.   When things are tough, you can get frustrated have a meltdown on the rock (as our daughter has done), or you can breathe....keep calm and climb on.    There is always a way through, it just usually takes some patience, perseverance and belief in oneself.....we just need keep persisting and trust we'll find the next hold or resting spot.

Two years ago, we were enduring a crux of sorts.   I vividly recall sitting on the floor of the bathroom at the neuropsych office after hearing the results of my son's assessment / evaluation .... and bawling my eyes out.    We were encouraged to begin a trust for him...that it was likely he'd never be verbal, and that we should prepare for a lifetime of caregiving.   Emotionally I could not grasp that....all I could imagine was a miserable life ahead, and only struggle.   We agreed to take things one day at a time...to continue with plans for early intervention, to access appropriate resources and support, and to breathe in the moment...

Similar to looking for the next hand or foot-hold, we took things as they came.   Eventually things fell into place and Kai began intensive in-home therapy with Easter Seals.   In June of this year, he graduated.   He is extremely verbal, and he is in a neurotypical kindergarten classroom.    Who woulda thunk...our kid.

On Thursday, Channel 58 will be coming to Kai's school to do story about Kai's journey, which has really been all of our journey.   They want to feature how Kai's success has been largely the result of early intervention, with hopes that resources will begin to increase in this area for other families like ours.   I will be interviewed (yikes!), as well as Kai's teachers and others who have been witness to his progress.  It should be interesting....I'm nervous as heck.

While I have mixed feelings about doing the interview (Kai is a complex little kiddo, and I hope the jist of the interview accurately captures the reality of this complexity), my true hope is to convey the struggle that so many parents of children with special needs face.  It really IS a very difficult, and often lonely journey which I don't think most folks understand.     Caring for a child with special needs affects an entire family, and often it does feel like an uphill battle.....a sustained crux if you will.  

I guess this is the part where I sit back and breathe...look back and think, "wow, we made it this far."  

I will often sit back and watch very accomplished climbers finesse their way through a route, thinking "wow, that's amazing.  How do they do it?"   While it is tempting to think I'll never climb that well, I need to pause and reflect on the work it takes to get there.   One crux at a time.....we climb on.    

Living Deeply

My mom's sister died the evening of our wedding reception, after suffering for over a decade with a condition that was never given a formal diagnosis.   Her condition left her with a body which failed to provide a rich blood-supply to her extremities, leading to a series of amputations.    These years were filled with quiet suffering...something that I only now am able to appreciate.

Looking back, although ashamed to admit it, I remember being secretly resentful on the evening of my wedding reception.   Here we were, much of our family gathered...having just returned from a magical trip to Mexico, celebrating one of the happiest moments of our lives.  Knowing the suffering of my aunt at a hospital in my hometown an hour away felt incongruent with my emerging world, and I could not reconcile our two conflicting realities.   Hearing of her death on the morning after led us to forgo the gift-opening...and instead, we sent our balloons up to the heavens in hopes that Aunt Judy would embrace them.  My heart wept as I released the balloons into the February morning sky, perplexed and contemplating the clashing of these realities.  This shouldn't happen I thought.   This isn't how life is supposed to be.    

I am saddened today as I look back and remember her quiet struggle.   I think about just how our lives unwind and how we clamor on a daily basis to "get our happiness on" or scurry to our next scheduled activity, while in the midst of some unimaginable, overlooked suffering all around us.  

One of the "gifts" (if you can call it that) of pain is that it serves as a constant reminder that things are not okay.    The word disease captures the reality of it....our bodies are not at ease, despite the lengths we go to conceal or anesthetize our wounded selves.   Physical, emotional, spiritual suffering is all around us, and unfortunately, the plaguing of personal pain heightens one's awareness of it...everywhere.

This past winter, as I recovered from each successive hospital stay lying in a bed in our living room (and clueless to what was happening in the outside world), I had learned that two of our immediate neighbors had also suffered devastating, life-changing news.   One, a police officer, had been hit by a drunken driver on Christmas Eve and was in the ICU struggling for his life...anticipating countless surgeries for leg, arm, and facial trauma;   Another, a 20 year old junior in college and working on her teaching degree...diagnosed with juvenile onset Parkinson's disease.   The guy across the way jokingly referred to "our side of the street" as having some kind of curse.  I on the other hand, found it ironic that all of us had been suffering but none of us knew it...until Tom, the retired neighbor, had talked to folks at the curbside mailbox.

This week I had also learned that the older brother of a friend from elementary school died in an automobile accident while on his way to visiting his dying mother in hospice-care.   Unimaginable grieving.    Life doesn't just "move on" following such loss... after a three-day bereavement leave or whatever.   Families, lives, and futures are fundamentally changed, and folks somehow keep on, keeping on while bearing an immense amount of sorrow.

Don't get me wrong...existing in a state of sublime happiness and contentment is wonderful.  We are wise to seek such things.    But if we keep running on the hamster wheel of the pursuit of happiness, pleasure, or whatever we need our "fix" of, we will only succeed at becoming more and more separate and lonely people.    The blessing in slowing down and connecting is that we will find we can emerge from our separateness.   Pain is not an "other" thing, but something we share in the depths of our being.   Closing our eyes to the suffering all around us only serves to increase our isolation and reinforce our created and temporary vision of happiness.   To cope, we tend to look outside of ourselves to grab onto whatever it is we believe will help get us through...we shop, we cruise the internet, we drink, we smoke, we eat, we run, we climb....whatever it is, we do it to lure ourselves into believing that we are "okay." Sometimes, we are.

With these things in mind, I was struck by a recent series of articles in the newspaper over the past year or so on the subject of opiate abuse and the prospect of discontinuing their use in certain medical settings.   As a legitimate sufferer of pain and also a social worker who has worked with substance abusers, I found the discussion bothersome and unsettling.   I understand that people abuse opiate prescriptions and use them inappropriately.    I also understand that pain happens, and, as inconvenient as it is, we cannot run from it.   Yes, there are issues of personal responsibility and culpability and liability.....but suffering will not go away.  

A few months ago I brought my daughter along with me for a follow-up appointment with my surgeon.   On the way home in the car, my daughter asked "Mom, is your doctor always so cranky?"   After briefly chuckling to myself, I responded:  "No Jade, he isn't.   But can you imagine what it must be like, every day, to have to tell mommies and daddies, husbands and wives, and brothers and sisters that they can't completely fix the person they love, or that they can't make them better?"   "Wow..." she responded.  "That would be really hard."  "Yes," I replied, "...it would. And what is really sad is that no one probably ever asks doctors how they are doing."   "Why not?"  my daughter asked.   "Good question Jade...." I answered, "That is a very good question."

We need to have a widespread conversation about pain. All kinds of pain....emotional, spiritual, physical....and loss. We need to acknowledge suffering.... to slow down and find out whatever it is in our organic bodies, as well as in our collective human body that is ailing us at our core. We need to be there for one another and to listen, truly listen without judgment. And yes, we need to allocate resources to help people cope appropriately in a world that is becoming increasingly disconnected and fast-paced.  We have to find meaning in these times, and help each other through.

Yet how do we embrace meaning in our newly emerging, increasingly disconnected worlds?   How do we acknowledge and honor life's most difficult moments?   I, for one, will start by getting off the hamster wheel.   I'll stop chasing and start living.  I think that when we are able to connect and listen to the stirrings within our own hearts, we can embrace the both pain and the happiness of one another...at a level beyond any experience we could create on our own.    Whether or not this is how life is supposed to be, its what life is.