Posts Tagged ‘ haiku ’

Sweet Lord, it’s Been a Minute

I suppose it’s a time-honored tradition — 12360130_10153881975963028_4719306674604972142_nfeeling like you’ve gotten a lot accomplished, then sitting down and realizing the messes around you still exist. There are gifts to wrap in a messy room where the tree’s not yet up. The dog suddenly has to go out. Then the cat wants in. It’s time to switch the laundry, too — but an hour in the kitchen doing dishes and making tonight’s dinner invariably leaves me weepingly dizzy. I would be proud that the chicken soup for tonight couldn’t be more lovingly home made, but instead I look around from a wobbling visual field at everything left yet to do. This happens every morning… I’m recognizing as a pattern that my late mornings and early afternoons are currently kept as the property of Desperation.

I also know this pattern can change any time without notice, or that “spells” might last longer, or occur at other times TBD.

But let’s not focus on the maudlin after so much time apart.


Reading my 2 haiku at the premiere

I’m designing a great many book covers and picking up volunteer work where it appears (follow me on Twitter!). I’ve been writing hundreds of haiku, and had two published for Poetry on the Comet — a project headed by the city’s Poet Laureate to place poetry on city buses. It’s exciting to be writing poetry again; now I just need to pick up a pencil and make myself start drawing (not only do you lose it if you don’t use it, but I stopped doing a lot of things I loved and at which I seemed good when I lost the ability and admit to now being fearful of trying. God it feels good to say that out loud though.)

12196103_10153148064583038_400264783271040078_nI’m not only still walking without a cane, something amazing and unexpected happened! Walking had become a great deal easier, but only at a a slow-moderate pace. Notching up to a jog was the hard limit my legs would not seem to move past (so to speak). My feet would fail to understand the concept of lifting, then returning to the ground in the same direction once speed and accuracy came into play. A couple of weeks ago we were again walking the boardwalk at the Congaree National Park; my walking speed had increased, so I gave jogging another try. The jogging turned to running and I kept going until breathlessness got the better of me (about 1/8m because I am only so fit). But holy Jeepers — I don’t remember running since I was young enough not to be obese yet. So congratulations to me on this, but I know I need to keep doing it now that I know I can.

The bladder? Still a thing. Did you know that Urogynecology is an existing specialty? Did you know that when they’ve reached a crossroads in treatment, they can refer you to a pelvic floor physical therapist? Because 3j5z6that also exists. Though on medication for the frequency, I’ve still clocked 49 bathroom breaks on a 48-hour period; the physical therapist has gotten me from 25 to 15 breaks in a day. The power of Zen is strong with me — even moreso because I’m getting a bit more sleep than I have in years. I have had dreams again! Only two or three, but it’s enough to let me know that REM sleep isn’t a totally absent part of my night anymore.

And now that sitting and facing the same direction for an undetermined amount of time has let ebb the worst of the dizziness and motor skill loss, it’s time to fold the newly clean laundry. Then I’ll put it away and sit again, then I will get up and take out the trash and sit, then I’ll get up and do something else which will be unfailingly punctuated by more sitting and not turning my head.

I can run. I can dream. I got this.



10635784_10152306012618038_6565154557685086387_nSo if your neurologist leaves you hanging without meds for 8 months, finds a bunch of new lesions, yells at you for having lesions, then spends another 7 months forgetting to get you back on the medication whose absence caused lesions in the first place… um…  question mark?

They have become the OPPOSITE of caretakers.

Time to try to find a new neurologist. Erstwhile, I’ll just go back to being my own doctor. I was better at treating myself than they have been at treating me.

I’m sick to my stomach with anger since it is Friday of this week, and I haven’t received a call back from Friday-before-last’s call. This is letter-writing-to-upper-management territory. Before putting pen to paper on it, though, I need a significant


  • I am grateful for last week’s trip to New Orleans! 10612806_10152306014138038_6823647608141364575_n
  • I am grateful for my wife’s YogaFit training in Nola, because it gave me much-needed time with friends whom I have not hugged in far too long.
  • I am grateful for strangers who compliment me on “dropping it like it was hot” while a 9 piece brass band jams off the walls around us.
  • I am grateful — and proud! — to have lasted through a two hour Haunted Nola walk.
  • I am grateful for the delightful birthday I had yesterday: I painted for the first time in over a year!10614371_10152306012648038_2163572054736577681_n
  • I am grateful for / haiku, because it is the / way words come brush stroke
  • I am grateful for waitstaff who can compliment my neck tattoo because it means they, too, appreciate something about art.
  • Seriously, I am grateful for New Orleans.
  • I am grateful for lunch being ready and dinner being easy.
  • I am grateful for the amount of love in my life, and
  • I am grateful for you. Shut up, I know that’s cheesy… but you are pretty awesome, right?

MS Haiku

This body often
feels like ten thousand needles
in a slow haystack