Tag Archives: setbacks

Day –1

Today, in the middle of the week of my beloved grandmother’s death, when I’m trying to rearrange my life so I can fly out to attend her funeral in Detroit amidst kicking off projects and rolling out PR plans and giving speeches about the future of technology and creativity and “innovating in the open”…

Today – I’m supposed to start a new medication for Multiple Sclerosis. For the first time in ten years.

Here it is.

Here it is.

Continue reading

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Month 3

I just recently passed the three-month mark of feeling “weird” from this Multiple Sclerosis relapse: my first in exactly ten years.

It’s interesting to look back now and retrace the myriad ways this annoying little f#@%er wormed it’s way into my life. It started in mid-January. At first, I wasn’t quite sure it was even much to worry about. It was only a bother during my commute. When I walked between the Transbay Bus Terminal and my local stop in downtown San Francisco – about half a mile – I lost sensation in my feet.

I mean, no biggie for someone with MS.  Continue reading

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One Good Thing

It was a strange day today.

I wanted to come home from work and write tonight, but my will has just sort of floated away. It floated away when I got gut-punched by life this afternoon; I got the wind knocked out of me, and I need to lie down now under a fuzzy blanket and watch garbage TV and just drift away.

I need to marathon at least three episodes of House of Cards and imagine a reality with a worse president than the one we might be faced with shortly…

I need to drink one cheap Mexican beer and eat leftover vegan pizza while horizontal. I’m going to let my dog gobble the crumbs off my blanket…

I need to not do my homework; I need to stay out of my basement (where I’ve developed my new home improvement obsession), and I need to stay OFF the internet…

I need to let my mind – my brain – rest. It needs it.

But before I go, I need one good thing to meditate on. Here it is:

“Learning to let go should be learned before learning to get. Life should be touched, not strangled. You’ve got to relax, let it happen at times, and at others move forward with it.”

– Ray Bradbury

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Manifestations

My experiment is complete. Vacation is now over.

Our two-week Greatest European Hits trip came to an end this past Tuesday; by Wednesday AM we were home in bed recovering from it all.

It’s true: the “recovery trip” itself required a recovery period after.

But overall, was it good for me? Did it help beat back my multiple sclerosis relapse?

Well…

Trent did photograph me every day. My hope was that those photos would, over time, reflect my physical progress. That you’d be able to see a little light come on somehow… I’m not quite sure if I believed the photos could be the evidence for or the actual cause of an improvement, but…

Here they are: Continue reading

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Manifesting

Even though I’ve spent all morning answering work email, I’m now “officially” on vacation.

(I guess since I get unlimited paid time off, and these will be my fourth and fifth weeks since starting six months ago, I can’t really complain about the working-on-PTO-thing…)

And since my health began deteriorating a couple weeks ago in what I believe is a direct response to my stress levels, I’ve decided to document the effect vacation will hopefully have in bringing me back to normalcy. Or at least getting me mostly recovered from this relapse.

I’ve asked Trent to photograph me every day. In my most natural state – however much effort I cared to put into getting dressed, brushing my hair, etc. I hope my energy level will come through in my choices about my appearance; I hope ever-increasing happiness levels will come through in my expression. I hope time off to rest and relax will allow me to slowly recapture my full mobility, and that progress will be manifested in my outward self.

So, to get started…

DAY 1:

After returning home from my last day of work, at 8:45 PM. Had to get my jeans off pronto because I felt like I was losing circulation in my left leg. Yelled at Trent in the car for touching me after he picked me up from BART. Cried when I couldn't figure out how to check us in online with Virgin Atlantic. Ate one takeout sushi roll for dinner and fell asleep on the couch.

After returning home from my last day of work, at 8:45 PM. Had to get my jeans off pronto because I felt like I was losing circulation in my left leg. Yelled at Trent in the car for touching me after he picked me up from BART. Cried when I couldn’t figure out how to check us in online with Virgin Atlantic. Ate one takeout sushi roll for dinner and fell asleep on the couch.

DAY 2:

First "official" morning of vacation. Spent most of it on email. Decided to go to the airport three hours early to get out of the house and away from responsibilities. Left leg still not working properly and right leg now in a lot of pain; stressed out about making the trip with a big suitcase. Oh well.

First “official” morning of vacation. Spent most of it on email. Decided to go to the airport three hours early to get out of the house and away from responsibilities. Left leg still not working properly and right leg now in a lot of pain; stressed out about walking while lugging a big suitcase. Oh well.

Time will tell what happens next. 13 more days of time, to be precise.

Ta ta for now…

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