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Sunday, December 13, 2009

Miracles: and My Good Friends Patience, Possibility & Faith

First Night of Chanukah
Chag Urim Sameach
~ May this festival of lights be filled with Joy

WARNING-LONG BLOG ENTRY AHEAD

I started to write this blog entry Friday afternoon after a day of integrating the news from my doctor. I had a big rush of mental/emotional energy so the writing is kind of all over the place, it is what I was feeling on Friday, and still it rings true for me. Now it is Sunday morning. Last night Gordon and I barely slept as Rosie was vomiting and had rising fever. The fever is lower this morning and she is resting. I always get so nervous when she spikes a fever. It was just about a year ago exactly that her high fevers started and she had to be hospitalized for the first time...and her doctor always tells us her weight is so low, it's possible she will have to go back in if she has a fever for a few days. So always this is a worry for us. I am praying that the fever will stay down and so will anything she eats.

Until today, it has been a weekend of celebration at our house; Rosie's 13'th birthday, the first 2 nights of Chanukah, the beginning of a wonderful week-long visit from my parents and some really great news! We (Gordon and I) went to an appointment with my neurologist Thursday afternoon. My MRI's look excellent! The largest lesion in my cerebellum is essentially gone. (Probably a combination of steroids and time.) The ability for the human body to heal itself is nothing less than miraculous. MIRACULOUS! Baruch HaShem.


I still have months of recovery ahead according to my doctor, but she really feels I will go into remission and regain most, if not all of my normal functioning again with the help of Tysabri and the natural healing properties of “time”. (I spoke with a nurse from Tysabri on the phone Friday-drug companies love to call and chat with patients...she said it can take up to 6 months for the drug to be working optimally in the blood stream-but many people experience improvement sooner than that...so we'll see.) My neurologist also thinks the vocal “globe-trotting” abnormality will resolve itself and that the neurons will continue to mend so that I will be able to walk and do yoga and WoW, even basic stuff like bathe myself, cook for my family, do laundry, drive my car and of course play the violin! (Just kidding...I was a terrible violinist as a child...not expecting that kind of a miracle!)


So for now...”just keep on keepin' on”...it's a process, a journey, an unfolding...of course all is speculation. MS is really mysterious; even the great oracle some call: "Magic 8 Ball" can't actually predict answers to all of our questions. But does that even matter? I mean, really... nobody knows what's down the road...not even tomorrow. (Yeah, it might be posted on my Google calendar...but in my experience change is the only thing that’s certain-well, and the love of my family and friends and God’s Presence.) So not to be negative, or dwell in doubt, I’m just keeping it real. And real is ok...it's healthy; it's reasonable and does not deny hope and possibility...but tempers them, grounds them...I think…I think a lot. I have a lot of time to just think.


What do I feel? (what do i feel?)...I feel that HOPE is a really scary word.


WOW...I said it. HOPE scares the crap out of me.


POSSIBILITY on the other hand...I love that word! It doesn't feel threatening or like something I could lose or get tangled up in (in a desperate kind of way). But HOPE...I don't know...I can't go there. But I can stay HERE and entertain POSSIBILITY and PATIENCE at the same little tea party...right HERE in my lovely Gnome Mound.


I hope (awkward) the HOPE-a-phobia doesn't offend anyone or confuse you. I realize a lot of people really connect to the word “HOPE”. Truly I don’t want to offend anyone or be disrespectful…many incredible organizations that make a huge difference in the quality of life of patients and their families who are suffering from all kinds of diseases (like Caring Bridge…an online journal for cancer patients and their families- a wonderful tool to allow people to share their stories and stay in touch with friends and family) and non-profits working hard to end hunger, war and ensure that human rights are respected and protected everywhere, use the word “HOPE” as inspiration to (at least) millions of people around the globe…(a word that in this case I interpret to mean) “hang in there…help is on the way” and incentive for donors to step up to the plate and support these undeniably worthy causes. (There's a list of some of these causes on the side bar of my blog beneath the title YOU can HEAL the WORLD) I’m not saying that that’s a bad thing…HOPE is a powerful word that has an emotional impact (obviously)…it reaches hearts and wraps around them in a “good way”. In fact a fellow blogger, Judy, who writes a lovely blog, Peace Be With You has inspired me with her exquisite story of HOPE (you can read this gripping story on the side column of Judy's blog) and she has left kind and compassionate words for me in the comments section of a recent blog entry...(So please Judy if you read this know that I am not criticizing or judging you...this is about my emotional response the the word HOPE in this moment-I think you totally ROCK!) HOPE is a valuable word and concept that does bring peace to a lot of people. It also ignites compassion and becomes a beacon, signaling us to take responsibility (the kind Naomi talked about in the last blog entry). The word HOPE can be a catalyst that motivates us to take action; Tikkun Olam (repairing this broken world). EVEN in me…of course! But here, now, in this moment, as I am contemplating HOPE, it stirs a sense of “lack” inside of me. That doesn't harmonize with my commitment to living with an attitude of gratitude.


In all honesty, I do feel positive, up beat, content and happy most days. I do believe that if I could walk 7 miles a day this past summer for 7 weeks...it is possible for my nerves to regenerate again like they did after the 5-month period of rest and renewal from the vestibular exacerbation that began last winter. I am quite certain that I am mentally and spiritually healthy. I grieve appropriately at times (this includes tears, yelling, muttering-that creeps my kids out- and complete loss of my inner monologue-also creepy to my daughters-yet I assume that’s still mentally sound behavior-notice all the parenthesis in this post...evidence of this lack of inner monologue) but not all the time (thus being appropriate to the situation, I think). I don't sit around feeling sorry for myself, or all “Why ME?” (Ok, admittedly, I've asked this question of God a couple of times-particularly in regard to the way my illness, Rosie’s illness, Belin's shoulder/neck injury and this seemingly constant “sh-t storm” as Gordon has dubbed our year long adventure, causes suffering to my whole family...but then there's always that inner reply “WHY NOT ME?”… end of conversation). It's just that HOPE is not a word that works well for me right now. It's a nice word...it's actually my younger sister's middle name. Pamela Hope. Pretty, right? For me, however, (as I sit here writing this entry) it is a word that is causing my neck to ache from looking upward toward a longing that's…well…a long way off. HOPE is just too distant! It’s a kite or a balloon floating high above with a thin string I can’t quite reach, let alone hold on to. Am I protecting myself here by not embracing the word “HOPE? Yes. Definitely. Do I still use the word hope in other contexts as in…"I hope all is well for you and your family today"…yes…and until this moment I never analyzed my use of this word…I think I say it and write it fairly often…as a way to…yup…inspire others. When I say it or write it, it arises from a genuine place of concern and compassion for the well being of the person I am talking or writing to. I’m not planning to take it out of my vocabulary. Now that this is in my awareness though, I will attempt to be more conscious of how and when I apply this word: HOPE.


For me, in regard to my own healing journey, however, this “clinging to HOPE” is like saying to HaShem (or myself): “This day, this situation is not acceptable” or “I refuse to see the blessing in being right HERE, right NOW”. But FAITH...that’s a word I can find myself in. It is clear. It resonates for me and fits my heart like a warm, soft glove...but not hope. Funny how hope is a small, no nonsense, simple, four-letter word; you’d think a heart, (my heart) could feel comfortable in HOPE’s embrace. POSSIBILITY is a HUGE eleven-letter word, practically enormous in comparison. Maybe the extra letters give me a feeling of safety? Plus look at these words…I mean visually (I’m an artist, I notice stuff like this): ”I” is in possibility three times! ”I” am right there in the midst of the word POSSIBILITY…and just “O” is in the middle of hope (being a four letter word “o” isn’t technically the center point). It’s kind of a let down. “O”. Can you hear the defeat in “O”…like it’s never gonna happen? (Yes you could change the way you accentuate the “O” and make it sound…ahem…”hopeful” with a different vocal inflection…true…but that is not the tone I am using here…humor me.) But there “I” am again in FAITH…right smack dab in the center. These are the kinds of thoughts that go through my mind lately. No wonder meditation is such a challenge for me right now…not to mention sleep. And you might be thinking “Wow, what an EGO”…and “I” reply: “Yeah, well EGO gets a bad wrap sometimes”. Look at the “G”! ”G” (IMHO) represents the quality of being genuine…original…and see, it’s in the center of the word…like God…the bridge that brings us together…the mirror that reveals/reflects that although we are authentic individuals we are simultaneously ONE with all that is. EGO defines us and grants us the consciousness to recognize our connection to each other. I know, “O” is in the center of the word God…I’m only human…and God can’t be contained in a single name…so let’s just ignore the “O” this time. OK?


I will have MS until the day someone actually finds a cure or until the day I die. Do I dare hope for a cure in my lifetime? I know for many people the answer would be a firm, resounding YES. But I prefer to believe in the possibility that someday there will be a cure. (Semantics? Perhaps. OK, YES, I am being creative and playing with words.) But, I’m not waiting around for the cure. It will happen in my lifetime; or it won’t. Meanwhile I have living to do with my current limitations. For the time being, I am healing gradually from the last 2 back to back exacerbations (as evidenced by the MRI's, improved reflexes when the doctor examined me, and although you wouldn't necessarily know it listening to my voice, my vocabulary is getting closer to "my normal" when I write-YAY). I know one day there will be other exacerbations…and in between, God willing, I will feel pretty good (like those precious 7 weeks this past summer)…and I will find some kind of balance, some kind of rhythm for my life in those “in between” times…like I am discovering in this time of deep healing…and it is POSSIBLE that the “in betweens”, the remissions, could last for years. It’s POSSIBLE, it really is. And it’s also possible that this is pretty much it; this is as good as its gonna get symptom wise even with the blessing of reduced lesions and longer grace periods between exacerbations, because of the Tysabri. (Insert random answers to "what if" questions from the oracle some call: "Magic 8 Ball" here.) After reviewing the MRI pix with my neurologist though, and taking in what she shared with Gordon and me from her experience with other patients, I do feel reasonably confident that there will still be more improvement this time around, just as my doctor said. So is that HOPE? Or logic? Maybe for you it sounds a lot like HOPE…but as I said before, that’s way too scary for me. I’m a kaizen kind of girl…small steps, gentle steps, steady, gradual, heart open to POSSIBILITY steps…steps that are not always steady, steps that take courage…but not steps off a cliff. (None of that Wiley Coyote stuff for me!) This is simply logical. (Do I sound like Mr Spock now? By the way…I just crosschecked hope and possibility in the thesaurus…they are NOT synonyms…whew).

FAITH and POSSIBILITY and PATIENCE…look at that…”I” am in Patience too! Now I have 3 guests to keep me company, while I’m not driving (yet), and resting and healing, snug in my Gnome Mound…with occasional, possible, excursions into this NH winter. And lets not forget it is Chanukah! A time to celebrate miracles (like neurons mending) and lights that illuminate the darkness of winter; the darkness one might feel without companions like FAITH, POSSIBILITY and PATIENCE, or family gathered round. (Did I mention that my parents are here in NH and there's snow on the ground? They are snowbirds-they go to Florida in the winter...THIS IS LOVE in action...another kind of miracle!) Or, the darkness one might feel if HOPE was all one had left to hang on to…(maybe if HOPE was all I had to hold to-I don’t want to take that word away from others if it offers comfort). At the same time, I don’t want to be in that kind of darkness….clinging only to hope…the thin string I can’t quite grasp…and that “slightly off center, sigh of an “O”.

17 comments:

  1. I am so happy to hear your fabulous news Laura!! The human body, and it's spirit, are indeed miraculous in their ability to heal.

    I so get your feelings about hope!! I've come to realize that when I relied too heavily on the idea of hope, I took myself completely out of the present, and away from what I needed to be learning from all I "hoped" to get beyond. When I consciously stopped the practice of hoping, a great deal of heaviness lifted, and I started to appreciate the details of my immediate experience - even the parts that have been most painful. There is much I've learned from my greatest suffering by allowing myself to just Be with it, and yes - have faith in the All!

    Blessings to you and your family, and may the fever lift today, as you celebrate light and life!!
    love, Karin

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  2. Hi Laura,

    I had a really bad childhood and teenage years. The one thing that kept me going was hope. Ironically, my name means hope. So every day I knew deep in my heart that this misery would eventually end. It took a very long time but hope is what made me tough it out.

    Hope is vital. It is essential. I think so many people have lost hope and that just eats away at the soul.

    So good for you for having hope and I am so thrilled that the MRI should that that lesion was gone. That is such wonderful news! Yay!

    With lots of love and blessings,
    Nadia - Happy Lotus

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  3. Happy Chanukah, Laura. And, no, you didn't insult me. I too sometimes have trouble with Hope. I end up turning it into an acronym:
    (H)ealth
    (O)pportunity
    (P)atience
    (E)ndurance.
    Does that help me? Sometimes yes, sometimes no. In any case, it's what works for you that matters. Great to hear of your reduced lesions, and thanks for the nice words about my blog.
    Judy

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  4. thankyou Laura for putting into words some things that simply float in the air at times

    you have named them and thus grounded them

    how wonderful to receive test results that are full of possibility :)

    now that you've got me thinking about it . . . the O in hope sounds like a 'sigh of letdown'

    but the O in possibility sounds like a 'catch your breath' because life has just surprised you with something wonderful

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  5. hi Laura i'm glad to hear your positive news from the neurologist.. my heart smiles for you :o)

    sometimes i think hope can prevent us from dealing with present realities.. i like your possibilities xx

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  6. Happy Chanukah, Laura!
    As Judy said, use whatever works for you. I fully understand what you mean about the word "Hope" especially when it comes to something as unpredictable as MS. I feel similarly about the word "Want." "Want" indicates that there is something lacking, that we don't already have everything that we need, that we are yearning for what is not in our lives, instead of accepting what is. (That's very simplistic; for an abused child, for example, they would certainly want what is not in their lives, things like safety, security and love.) But I do understand how you feel about words and their meaning and power in your life. I love the word Possibility; anything's possible!

    I'm so very happy to hear some good news about your progress so far. Wonderful! Certainly something to be celebrated!

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  7. Thank you all for your well wishes and of course for understanding what I was trying to say.

    Nadia, I hear you, and respect the need for the word hope in your life and I agree that there are many others who need the word hope; that for many people it is a healing word. I was writing from my personal perspective and in no way wish to cause suffering to another person by judging their use of a word/concept that brings them comfort..."its all good" as they say.

    Judy, thanks for the acronym! Gives me something to think about.

    A friend shared this with me last night in response to this blog entry:

    Joan Borysenko's tiny book It's Not the End of the World: Developing Resilience in Times of Change. She says something similar to your post on page 26:

    "Studies on former POWs confirm that facing reality is, in fact, one of the keys to resilience. Dr. Steven Sothwick, deputy director of the Clinical Neuroscience Divison of the National Center for PTSD, is one of the leading experts on resilience. He coined the term realistic optimism from his observations that resilient people "have a habitual way of explaining event to themselves. They see the negative but don't dwell on it or over-generalize." I (Joan) call this explanatory style optimistic realism--the ability to size up your situation dispassionately, while still staying open to positive future possibilities."

    This is what I'm talking about...but in a much more concise form!
    xoxoxoxoxoxoxoxo
    Laura

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  8. Oh Laura I am so happy to hear the news of your progress. Yeah! I never really thought so deeply as you have about the word hope. In the last six months or so I've been rethinking possibility as opportunity. I'm shifting from wishful thinking that I associate with possibility thinking to the more action oriented thinking that I connect with opportunity. Words and the layers of meaning and associations that we put on them is so fascinating. I posted to my site today my latest ikebana arrangement that I dedicate to my Jewish friends. Yesterday's arrangement is in honor of my Catholic friends. I think this is turning out to be an ecumenical week for me on my blog! Cheers to filling our hearts with light so we can take lighter steps into the new year.

    {soul hugs}
    k

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  9. Laura,
    I feel that you have made a beautiful (and powerful!) choice of companions in these three words...more than words, states of mind, heart and spirit. These 3, I believe, anyway, can translate into health. If we keep sending our body messages through this amazing electrical neuronal system called body/mind (which we hardly have a clue how it actually works!) we may experience healing and miracles. I've had it happen to me. I've seen it happen to others. And that is precisely what keeps hope alive!

    I am glad that you are striking out on your own this way. Who CARES what anyone else thinks. My Sylvia (whom I get to speak with today, yes!) advocates all 3 and she is a Buddhist. Perhaps it is her Jewish heritage and heartset that allows her to incorporate it ALL. I hope so, because that is where I find myself too these days. And her teacher, a staunch Buddhist wrote a book titled, Faith. You gotta love it, really.

    I'm holding you in heart, thought and prayer and always cheering you onward. I hope your darling girl feels better today...

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  10. Laura, I do appreciate your reflections on hope and possibility. As you know I often feel presumptuous speaking about hope to people (individually or in a group before me) who are suffering. Who am I, any of us to make promises or gauge the odds, to anticipate God? So I will take to heart your take on possibility.

    Be WELL (!) and chag urim sameach.

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  11. Karin, Kel, Rose, Sue, Kathryn, it is so wonderful to feel supported and really heard.
    xoxox
    Laura

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  12. Jan, I know YOUR Sylvia, from a meditation retreat with her and her wonderful books...and indeed she does embrace all three of these "friends" too.

    Jon,
    We have talked about this and think you do know what to say and when to say it...trust your heart...in the two years you have been my Rabbi you have not failed me with kindness, compassion and speaking from your inner wisdom.

    gentle steps,
    Laura

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  13. So glad to read of your encouraging test results. Good news! I like your choice of word "friends." In my family we like to say that the possibilities are endless. Thank you for the comment with the reminder that even chosen journeys can still be scary sometimes.

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  14. What everyone said! Wishing you endless possibilities, as well as limitless companionship on the journey. And thank you for continuing to stop by and read my musings about my journey, as well.

    --aa.

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  15. Laura,
    I forgot to mention how very happy I am that your medical news appears so hopeful! Such a blessing. I continue to hold you in thought, heart and prayer that all in your life will continue to unfold for maximum health. :-)

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  16. thank you all for your well wishes and may POSSIBILITY be a constant companion for us all!
    xoxo
    Laura

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  17. Peace and Blessings to you.
    I pray your daughter feels better soon and I'm joyful of your great news.

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