March 2009


I am using my little vials for getting my left fingers functioning again by moving one from an end of wash cloth on tray to the other. This is also helping with swelling and flex.

Also, getting so that I can flex off the tip and insert my own drops is just habitually buiding back the fine motor neuro muscular task. I needed to use my teeth yesterday. The eye lubrication is top priority for maintaining vision. I am happy to be able to move even IV strewn arms to do them myself.

Lube at nights and thru scans and rides through the halls (hat tip to smooth transfers!) worked well otherwise. Folks wrote large with marker when needed.

I’m not so great at remembering names. Everyone’s been aces all over.

Lots of smiles around, including ours.

These inflatable beds are awesome.

Pics in Flickr. Doing well. Weaning down on roids.

Ok, the deal tmrw: we check into pre-op at 7am, then it’s a couple hours to actual surgery start time. My docs are very detail-oriented and they will take extra precautions for intubation as well as accessing the surgery spot. This is a large right meningioma and some of my ABI internal components may need to be handled during the surgery to remove the tumor. My doctors are tremendously experienced and they will be both prepared, as well as ready to handle surprises. Just keep the faith. My team has seen me through a lot over the years. They are very cautious and conservative about preserving functions (above all, life) and anatomical structures. With extras in my head, the surgery could be very long. I’m focused on stability, positives, and confident in the process. And just really hoping my brain doesn’t let
down anyone. ;-)

We’ve had a nice relaxed pace getting things together. Smooth.

I am supremely pleased with my body’s tolerance and the ease of activity around me. (Still a superfan!) My family’s awesome, encouraging and right on the ball.

Everything is so delicately contingent, and going moment to moment is adding up well. Still the realistically cautious optimist, guarding most against a fall is the main thing at this point.

I feel positive and as if the dexamethasone is working with my body. The sleep has to be the main key! ABI sounds are nice too–regulating beats from the wall clock, and then sounds of the house.

Eating and all that good stuff’s going well. Gentle movements are key. Nice that vision is good, no fever, no nausea, and weaknesses are compensated by others. There’s a joy in just feeling and experiencing. Simple. Not exactly rare for me on any day. And the abundance of pillows, jokes, and hugs help too.

I’m focused on healing, compassion, and thinking of all yous. Keep smiling!

so I am taking it level and all in with the plan and unfolding experiences. No worries, please. Positive vibes, prayers, thoughts, and healing energy are all appreciated.

Since last Mon am:
Sent to local ER after calling neuro.

Brain swelling.

Ambulance transport arranged to take me to IU for preadmit.

Admitted to Neuro ICU.


(Insert a whole lot of interesting, yet mutually well-managed experiences and exchanges of info.)

Too wearing to recap. IU rules. I’m in the best hands, and was able to come home to rest for the weekend, with family’s fulltime assistance. So I’ve gotten rest and we have been able to get things together for my admission, get a jump on OT and PT. Moment to moment is working, with many moments of joy and humor. Lots of stories.

Surgery will start early Wednesday morning. Very involved; be patient. I am comfortable with the process of healing. Back to relaxing. You too! Have fun!

And many thanks, always!

Head to toe attack last night about 40 mins after taking evening dose of Keppra. Hedged on whether to visit the ER, somehow made it to bed. Sleep could’ve been worse. Funky head sensations are back and any gains made yesterday are nullified. It’s moment by moment now.

Yesterday, I couldn’t even roll to the edge of my bed, let alone stand by myself. I cringe more for my family’s tension than anything. Some comic relief has been easier to come by–all hail escalating thresholds. I’m happy being alive, breathing, and aware of many varieties of potential–in just being. I’m already reverting back to ways of constant adaptation. No guarantees and highest vigilance against falls, but I am managing. Kind of. We’ll get me in to see my neuro tomorrow. I suspect a few causes, and just hope the answer tomorrow isn’t centered on drugging me up. I don’t think my organs handle heavy loads of meds very well–and actually suspect an overdose of one I’m on now–what got increased by a quarter of its daily dose after my late Jan episode. I try to give things time to even out, because sometimes that’s all we need.

I’m finding myself using spoken praises towards myself, similar to the kind tone and understanding used with my nephews (and kids in general), as I complete steps of things like rinsing and drying my glasses. I don’t think we are always so quick to be kind to ourselves.

I wonder if this works in the other direction too, so I’ll go ahead here and just emphasize the growing weaknesses I’ve been experiencing. Come on, void my claim; reverse the trend. My poor neurons have taken such a hit. Again. I know this territory–as constantly changing. Everything’s worthwhile. I’m rooting for the power of neuroplasticity.

Anything’s possible, right?

I remember the tune from the oldies station our parents would listen to while playing cards. It always amused me at the same time I gave the songwriters and singers a benefit of the doubt, similar to what I’d given many of my relatives who were sharp enough to make jokes, while harboring more expansive ideas about the more meaningful aspects of relationships and life. There are always more layers.

I had the tune in my head, but it’s a tangent.

When I saw the joint bungee jump, I started to watch to see if the intensity of a shared experience would come into play.

I’m at the mercy of others for rides for awhile. (It’s informal and self-imposed.) The role is one of capitulation when it comes to few and far-between local trips around town: I’m not all pushy about controlling the tunes. So, bye-bye to my preferred grooves, and hello, unknown/later-checked Sunny 101.5. The perfect laboratory setting, though: caught unaware, seconds after we had slowed for several deer to dart across the road at twilight, and this song sounds familiar. “I think I know this song…” Seconds later: You Can Call Me Al–for sure, based on the smiling driver, and courtesy each of my 4 programs. Program 3 allowed for initial recognition, with Program 2 yielding the best capture of range of sounds in the moving vehicle.

Overall, concern about limb weaknesses grew today. But I do hope to be documenting more settings and listening experiences soon–hopefully feeding back on overall strength building. I had the orientation to all this formulated and put into action so well as a late-teen and through early twenties. I recovered it a couple times, but don’t seem to complete what I need to get things to stick before another hit shifts it all again. When you can’t pin it down, you just try to do whatever you can, and keep at it, altering pieces here and there–aware of plenty that you’re missing. Interaction.
Just so there’s no bogging down in better or worse, rather than just different; the aspects and qualities we miss when we judge prematurely…