Just Breathe

just breathe

on your next

inhalation

the world

will change

                                            

as you 

exahale

you will 

change

and all

is as

it needs to

be

opening

bright

foggy & dark

shifting

muted & quiet

expansive

 

nearer

 oh so near

here

breathe 

GRATITIDUE

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

for exquisite views of the skies around the world

 and imperfect prose that perfectly reflect whole hearts

A Long Road Traveled

Here's yesterday from the perspective of a long road traveled:

We left the house for my appointment at 8am yesterday morning...it was an hour and 40 minute drive to to Lebanon from our house. My doctor spent a good hour examining me and talking with me and Gordon. She gave me medicine to help calm my nervous system (Klonopin, and the ok to use Meclizine as needed for vertigo...with an option to take more or less as needed. For the next few days I'll be taking a higher dose to just sleep as much as possible, then perhaps by mid Sunday I'll start to feel rested enough to take it back down to a much smaller maintenance dose). She gave me orders for physical therapy, vestibular therapy and speech therapy. Things to start scheduling next week after I simply rest deeply for a few days. If you are a friend who has helped with driving, laundry, cooking in the past we will be contacting you soon with a handy planner I found, an online service called Lotsa Helping Hands (something for everyone to check out in times of need!) This should help make everything run more smoothly until I am back on my feet and able to pitch in at home again. Gord and I will spend time looking at this and setting it up on Sunday. My Gordon really needs some help. It's all too much for him to manage everything right now, the girls are helping some, but they are so busy doing homework and other activities...there's just so much they can do and still "feel like normal teenagers". A fine line. 

I am thanking you all in advance for myself and my family, trusting that this amazing community of friends will be here for us once again, and that over time we will find ways to reciprocate your generosity and kindness. And, of course, if you cannot help at this time, we totally understand and appreciate all that you have done in the past. We are so deeply blessed to be a part of such a loving community.

My doctor's hope is that in a few months I will rebuild the strength in my legs, learn to work with my speech impairment (dysarthria) and be up and walking and talking (with the jerking under control much sooner). If however, by the end of next week the meds have not helped with the jerking (and I believe they will) it will be back for more studies (mri). For now, if I go out of the house, I have to use my wheelchair...it's not safe for me to walk with out walls nearby or Gord or the girls to help me...except I can make it to and from the bedroom to the bathroom ok with furniture and walls.

Here's a description I shared with my friend Karin the other day: 

I imagine myself like spidermom...I decide with my spidey senses where I'm going to land...bed to dresser...dresser to right wall right wall into left bathroom wall and so on until I reach the toilet...and then it begins again...my head turning like it's going to take off and my limbs trembling and jerking.

For the time being, no steps except on my bottom with assistance and crawling back up with supervision. Hopefully those restrictions will ease up soon.  Once we get the jerking under control with the meds, it will be easier to figure out where in space to place my feet and they will stay put. (so far no changes this morning, but only two doses, so I am praying for tiny miracles...the ones that will sustain us all!) I try to see this with as much humor as possible...in fact, sometimes as I move I hum the theme song from the Spiderman cartoon I used to watch as a child. (I've heard Gordon humming it too!)

Yesterday, the road goes on...

Rosie had an appointment with her GI for 4pm in Waltham, Ma....so we had to drive nearly two hours north to my appointment in Lebanon, NH in the morning, same distance home, stopped briefly there to let the dog out...picked up the girls at school...drove another hour and 20 minutes south...waited for the doc. He's pretty concerned about Rosewillow's weight again. She grew a little taller, but lost a couple lbs. So now he needs to determine if there is more inflammation going on or what's up (if that's the case further studies will be needed and we might need to change her medication back to subcu instead of oral-as that's the main change since she started losing weight again). She has to try and eat more (and he fully understands how hard this is for her...eating causes pain-it's a vicious cycle for a kid with Crohn's). If in the next 3 months she does not start gaining again (and now we have to set up monthly monitoring at her local pediatricians office again-oy more scheduling!), she will need an NG tube re-inserted. We're back on the razors edge with nutrition. 

As you can imagine, we left there not feeling terrific. We stopped for dinner because the traffic would have had us sitting for a couple of hours and we had to eat. Drove home  after rush hour and arrived around 7:30pm. I took my meds and went to BED! I don't know how much homework the girls were able to complete as I slept through all of that and even the morning rush...we are all doing the best we can.

Last night I did check messages before going off to la-la-land and found this wonderful surprise from my friend Debra at She Who Seeks
and so I would like to send this honor along to some bloggers (who consistently drop by and fill my days with sunshine...gosh there are so many and this is really impossible, I mean truly there are sooooo many generous souls who drop by every day...but I will choose five, wait make that 13, no how about 18? and trust that you well keep spreading the love and sunshine around! Forgive me please all of the rest of you dear ones who are not on this list...I had to stop it somewhere. SOOOO much Gratitude for you and all of my non-blogging friends and family who support me non-stop with love, love, love...my heart is humming and full, full, full!

sharon
debbie
leslie
deb
ernestine
paige
beaux
toni
karen
karin
jan
judy
joanne
sue
kathleen 
naomi
angela
rose

And thank you to Jan,  Momma Buddha Chick for drawing my name for a fabulous prize: the 6 cd set of The Dangerous Old Woman by Dr. Clarissa Pinkola Estes! How cool is that?!!! And I have lots of time to rest and listen...all things work out just as they need to in life. (And to Jan and my Buddha Chick Sisters....thank you, thank you for your encouragement....this weeks lesson and podcasts are incredibly supportive...sorry girls if I'm not online commenting a lot...I will be checking in from time to time to see how you are : )

All this said, I will be blogging sporadically...maybe...if the muses wake me up enough to share, I'll post something. In all of our driving yesterday I took TONS of photos (mostly crappy as we were driving between 60 and 65 mph...but a few good ones.  

 For now I will mostly be resting peacefully beneath a remembered autumnal-foliage-quilt....

  

cradeled between misty mountains, lit softly through gossamer cloud bed drapes.

My intention is to be back online more consistently again by Monday. I will be viewing your messages (between sleeping) and if I'm up to it will reply...please forgive me if it takes me a while to get back to you. When I am awake, especially when I first wake up my heart and mind go to prayers...spontaneous prayers for friends and family who I know are struggling with health (emotional and physical)....you are never far from my consciousness. Even if you don't hear from me directly...I'm sending out good, healing energy for you! This is just how my brain operates...I wake up, say modah ani (a gratitude prayer) then my list of who do I know needs a prayer or reiki right now tumbles through my mind and my heart softens and opens.

I wonder, is this how other people wake up? I'd love to know...please tell my what your first waking thoughts/rituals are!

gentle steps my friends (and truly, may the floor be there to meet your feet when they touch down!)

Purple Asters

just purple asters

cascading down a stone wall

all I want to be

and all that I am

sunkissed stones for a warm bed

no worries, I rest

No big changes...just hangin' out in my regular bed...I see my doctor tomorrow. Sorry I haven't written more and that I've not been good at visiting your beautiful blogs, I'm pretty worn out. Thank you as always for all of your kind words of support dear ones. I'll be by when I'm feeling a bit more sunny and vibrant like these asters : )
gentle steps,
Laura

Warm Tea

waking up today

shivering, not just shaking

brrrr, I feel so cold

grateful for warm tea

autumn has truly arrived

thirty six degrees!

  

for more shadow shots

perhaps in warmer places

click on the icon

Thanks everyone as always for your kind and supportive comments. I've still got the weird myoclonus going on, but getting used to it.

"Normal"

Wonky Barn, Jan 2010

I took this photo last January, when I was driving again after a long time of being home-bound...this week I am pretty much bedroom-bound...the earth has not frozen yet, only rain coming down...my health got better, it got worse again...I'm feeling like a wonky barn today...see all the cracks? The pealing paint? I need to peal away my paint, expose my pain a bit...allow the breath of life to flow in and out in this healing space I've created here on my blog.

Catharsis:

a : purification or purgation of the emotions (as pity and fear) primarily through art b : a purification or purgation that brings about spiritual renewal or release from tension

Yesterday in email conversation with a new friend who is also living with chronic illness this is what I was thinking: "normal is not a very helpful word is it? I think sometimes it keeps me caged in comparisons and separate from the moment at hand...because what ever is happening in this moment is "normal", for this moment." Today, the shaking is less violent, but still present...when I make shifts from laying down to sitting...sitting to standing...standing to taking one step....one step to the next. Each shift in body position sets of the shaking of my head, my limbs. My voice is still not the way it was. I have had periods of dysarthria, on and off for many months-usually triggered by heat or fatigue, but after a few minutes of cooling down or resting...it abates. Now it is pretty much constant...although there are moments when it is harder to move my mouth than others...over all I sound fairly drunk...well, neurologically impaired anyway. I just had a really good cry that was building in me, I don't cry often. I'm in a very broken-hearted place...and I understand this as a blessing...a crack in the a heart leaves space for healing to enter, this I know to be true.

Gordon helped hand me things in the tub...soap, shampoo...undid the drain so I wouldn't have to bend forward reaching for things. He held my hands as I stood up, promised not to let go as I stepped over the side and found the floor one foot...the other. He guided me to the stool where I sit to dry off. I sat there, my head shaking and shifting from side to side, words difficult to form with my mouth and tongue flowed easily in my mind...and somehow a few tumbled out with my tears. A lot of "I'm sorry's" And "this is so unfair to you and the girls". "I just want you to love me the same...I just want you to know I'm still me"...and I don't know why I even question, for a 100th of a second his love for me or devotion to our sacred marriage...but sometimes I get so scared...maybe I'm really talking to myself....Maybe I need to know that I'm still me....Maybe I need to know that I'll love me no matter what...maybe.

I am at the bottom of the mountain looking up again. Every time new symptoms arrive, there is a process of grieving, of realizing that I survived the last onset of changes in my body, got used to them...they became "normal"...and now things are different yet again...maybe the new symptoms will become my new "normal"...maybe they won't go away...Maybe I really am the lady in the wheelchair with the shaking head, twitching limbs, speech that no one can understand because it is so slurred/slow/stuttered/nasal (lets not forget the foreign accent too!)...Maybe I'm that lady that little kids point at in the mall and ask their mommas "what's wrong with her?" and their mommas hush them and whisk them away whispering "don't point...don't stare...I don't know..." The lady in the chair people look at with pity in their eyes and talk to in overly kind high pitched slow loud slightly condescending voices...assuming that the lady in the chair doesn't understand what they are saying...not because they are being cruel, but because they are being kind...they are acting from a compassionate place.

I wonder, do they truly see that the lady in the wheelchair twitching is an adult person? (even though she appears small looking down from a standing position) Do they recognize that they too are the lady in the chair? or could be? She is a whole, complete, intelligent person, albeit broken, no maybes about it ... today the lady quaking in the chair is Me. Broken and whole.

This brings me to a passage in Toni Bernhard's book How To Be Sick in which she discusses Ajahn Chah's broken glass teaching:

"...Whenever you use this glass you should reflect that it's already broken. Whenever its time is up, it will break. Use the glass, look after it, until the day when it slips out of your hand and shatters. No problem. Why not? Because you saw it's brokenness before it broke!"

***please read Toni's book to learn how she has taken this teaching and crafted a healing practice through it!!! She's amazing...you have to get to know her, learn from her...I cannot recommend her book enough!!!

I could get better in a few days...back to my last "normal". I hope so, I pray that it will be so...but I might not. My experience has been that each time a new set of symptoms appear, there is some kind of lasting residual. And yes that makes me sad. And I also know deep down that the sadness will shift to acceptance and that there is room for sadness along with joy and anger and love and confusion, frustration, disappointment, satisfaction...room for all of it in my broken-body, broken-myelin, broken-heart. And this is the way of all living things, in our own time, we break.

This is where I am today. This is what I am living through in this moment. It's important for me to look at this fear...scared and sacred are comprised of the same letters...the fear is holy, it is a dark place I must enter from time to time...pass through so that I can continue to grow, accept, love my body as it is today...not yesterday, not tomorrow, today. For today...this is my "normal".

This is raw-writing...no editing ...catharsis.