Thursday, April 4, 2013

Carnival of MS Bloggers #138

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Hi All.  As you may know, I'm a director on the Board of MS SoftServe (see video).  The goal of MS SoftServe which is to help people living with Multiple Sclerosis to learn on their own terms is very important to me.  We are very close to making this a reality.  I ask you to make a donation of any size to bring this site to the Internet.  Our goal to get the site up and running is $64k. Please join me in support at any level!" (link to donate)

by Laura of Shine the Divine

soft silver secret
swinging just within arms reach
what have you to teach?
Pussy willow wild and free the halo of your mane caught me by surprise, what joy! Your secret softness is safe with me; most folks drive this road so fast. I watch as cars speed by this passage between there and there forgetting the footpath here where immeasurable treasures await discovery, the silky silver sort, hidden between all the other twisted trees. Before I lost the gift of stride, then learned to walk again, I too passed you by completely unaware for years. To be honest, I’ve always been a seeker, yet it was the losing that downshifted me into the slow lane. And I choose to meander whenever I can, with intentional steps even on days I could move more swiftly, grateful for this life and the mysterious paths that guide me to everyday miracles like this pussy willow tree, unique among its companions, growing wild and free.

Or an eagle, yes a majestic eagle delighting (I imagine) in lunch, perhaps for his family waiting in a nest in an exquisitely tall tree, talons gripping “someone” on the river-side of the highway. We saw him early yesterday afternoon on our drive to my neurology appointment. This seemed a good talisman and indeed it was.

It has been a while since I’ve written about living with MS. The MRI I had last Friday evening shows no new changes in my brain. It is exactly the same as it was a year ago. A YEAR! This is the longest span between exacerbations since diagnosis in 2009. My doctor did point out some tiny black holes; yes my brain like the moon is made of Swiss cheese. Well perhaps a better metaphor would be the vast universe. Did you know scientists actually know more about the universe, even the theoretical multiverse, than they do about the human brain? She said the spaces are not new, however she’d never showed them to me before. *Aha, perfect segue. I just mentioned what I’m blogging about to my husband who informed me she had shown these to me before. I don’t remember, NOT at all.

So while there are no visible changes in my brain, my family and I are clearly noticing some cognitive shifts. I’m imagining the black holes swallowing the words that go missing, as well as events everyone swears I was in attendance for although I have no recollection of “said happenings” happening.

It is very strange 1. To be able to visualize an object or person, to be able to describe it or them perfectly and have absolutely no idea what it is called or what their name is. Sometimes the word or name will come to me later; other times if no one else understands what I'm talking about and can tell me, it is just gone. I mean, yeah, I know everyone has this experience from time to time, especially as we grow older, but this happens to me as though I am a LOT older than my body chronologically is. It’s weird. AND 2. Weirder still is to be told repeatedly, “But MOM you were there! What do you mean you don’t remember?”  Or, “Yeah hon, she showed them to you,” kindly softened by, “but you were probably too sick at that appointment to remember.” Swallowed whole, into those tiny black holes apparently. 

I have some cognitive testing scheduled next month and that’s good. Maybe there will be some helpful hints and coping strategies, although so far charades works for devoured words most of the time, and the edited/deleted events of my life calendar will just have to be an annoyance others live with. This wouldn’t particularly bother me since in my mind these events never happened anyway, but it is uncomfortable when my kids use accusatory or at the very least exasperated tones of voice when I’ve forgotten something that it appears had been important to them. ~Sigh. ~ Then again they are teenagers, so if I didn’t annoy, exasperate and inflame accusatory tones of voice through forgetfulness, there would be plenty (ha, ARE) plenty of other opportunities to stoke the flames. The word thing is frustrating. My loving husband’s example teaches me however that these irritations are chances to practice compassion toward my self, this amazing body with a Swiss cheese brain doing its very best in every moment. And truly, how awesome and miraculous is it that for the most part this broken body functions quite harmoniously?  That any human body mostly functions harmoniously? 

I am in remission, have been for a full year. I can walk and talk nearly every day, though by evening things start to get MS’y. I’m not complaining, just explaining the ever-changing landscape of one person’s experience with MS.

And this landscape includes awe and joy and gratitude, black holes and missing words and speech that gets mangled by dysarthria and legs that sometimes just won’t lift on their own and a majestic eagle touching down to hunt along a highway and memories gone missing and pussy willows emerging wild on a country road meandered down slowly on an afternoon when it was all systems go in this body with a Swiss cheese brain doing the very best it can moment by moment.

I met an older gentleman at the dentist office today, I’m guessing close to ninety. He was struggling to sit down. Looked me in the eyes and started to share his story even as I slipped my arms into my coat, the bum knees, his survival of kidney cancer. I said I was sorry for his troubles, told him I could understand the difficulty with a body giving out, that I live with multiple sclerosis. He asked a lot of questions, seemed surprised that I could drive, and was especially curious about treatments these days. Then he told me about his wife whose life was lost to breast cancer and his daughter's too to ovarian cancer. And I felt such deep compassion, could feel his need to connect. I didn't have to rush out the door so I stood there for quite some time listening. No one escapes loss. The losing teaches us to slow down, the losing teaches to pay attention, the losing teaches us compassion. And when you live past ripeness, like this man and many lines cross your face, you meander your way along your path. 

I can't say if he sought out a kind stranger to pause with full attention, by the way he settled heavily into the chair with a tired, audible sigh, or if it was me, the open seeker catching a glimpse of the silver halo shining from his still dense mane, remembering (yes some things I do remember) today's Omer teaching from Rav Yael: "...Moshia yishrei lev. The Mystery opens the path of the heart." ~Psalm 7:11 on this the 7th day of counting the Omer. Yesod she b'Chesed, the Indwelling Presence of Love... "Notice acts of kindness and generosity that are bestowed upon you. Notice the moments you respond to yourself and others with love." Either way, we did.

This concludes the 137th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 18, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 16, 2013.


  1. thanks for sharing this Lisa. Wonderful video and project. I'm going to try and cross link it to my blog:-)

    1. Thank you so much, Laura! I appreciate it a great deal. The most exposure we can get, the better.

  2. phew, got it up on my sidebar with a link to donate:-)

  3. a beautiful post. thank you for sharing. maybe one blessing of disability is that it can open us to a deeper appreciation of the tribulations of others.

  4. one good thing that comes from living with a disability is that we are perhaps more sensitive to the difficulties of other people. thanks for a beautiful post.