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”.