It's a shame that I can't just get up and use the computer
in the middle of the night when I have trouble sleeping because it seems that's
what I come up with my best stuff.
Unfortunately, I only remember bits and students to I fully awake the
next morning. Last night was a perfect
example. I woke up around 4 AM, which
seems to be my usual wake time most nights.
It is usually some profound thought or strange dream that causes me to
wake up. Usually, I am wide awake. I also seem to wake up quite frequently
between 1 AM and 2 AM, but usually have no problem going right back to
bed. It is that 4 AM wake-up that I
struggle with the most. I will usually
drift in and out of sleep for a few hours until I finally get up. This has been a relatively new occurrence
over the past two months, and certainly has not helped in providing me energy
or enlightening my mood. In fact, since
about mid-August, I would characterize my overall mood as "sullen."
Nothing major has occurred over the past two months. No major declines in function, any major
falls, aches or pains, no real bad news to speak of. But for whatever reason, I have been in a
funk during this period, with many more lows than highs. I have continued working, going into the
office about 2-3 days a week and working from home, 1-2 days. One of my primary responsibilities is to
facilitate staff meetings. Something I
was not particularly fond of, even when I was healthy. My first meeting was towards the end of
August, with the majority of my staff (about 30 people). In the days preceding up to the meeting, I
became more anxious, wondering whether I could still do it. As my breathing becomes more difficult, it
becomes harder to maintain speech, particularly articulation and loudness. The day before the meeting, I even considered
bowing out, as the thought of presenting in a conference room in front of my
peers began to become very daunting.
Suffice to say, I believe the meeting went very well and I was very
surprised how well I held up. In fact,
at one point during the meeting, I was able to let out an impromptu, semi-half
assed rebel yell as we came to one particular favorite agenda topic. Additionally, the two proceeding meetings
went just as well, also. I should
consider this a major accomplishment, but for some reason I don't.
As many of you know,
I was diagnosed in the spring of 2007 and the diagnosis was confirmed that
following fall. In the fall of 2008, after
asking if I was still working, the clinical team at University of Pennsylvania
Hospital informed me that because of my diagnosis, I was eligible to go on
full-time disability. In the fall of
2009, after asking if I was still working, the clinical team suggested I go out
on disability. In the fall of 2010,
after asking if I was still working, the clinical team recommended I go out on
disability. In the fall of 2011, they
didn't even bother asking. Five years
ago, there was certainly some doubt on whether I would be here today, let
alone, still working. As far as work
goes, my goal is to finish out 2012, and to assess the future during my winter
break. At times, though, over the past
month, it has been a struggle just to get through this month.
Last week, I went for an assessment on my wheelchair. Lately, and I'm sure this is contributing to
my sour mood; the wheelchair has become not only very uncomfortable to sit in
(literally, a real pain in the ass), but at times, very difficult to
maneuver. As a result, I'll be getting a
new cushion for my tender derrière and a new head rest with wheelchair controls
built in. Therefore, I will be able to
control the wheelchair by moving my head.
Now, besides are tremendously high IQs, I will have something else in
common with Stephen Hawking. The
wheelchair alteration can be seen as a mixed blessing. Depressing, in the fact that it is another
step forward in disease progression, but comforting to know that it may result
in giving me more independence as far as controlling the wheelchair.
Part of my lethargic mood has also interfered with my usual
rah rah over the ALS walk in Philadelphia.
The first year we did it, we signed up around April and got the ball
rolling. Last year, thinking that we
started to earlier the previous year, we kick things off in July. This year, without much fanfare, we finally
got things started in late August.
Unfortunate, because this is something I really looked forward to for
the last two years. I even have actual
special reason to be excited this year, not only because of the tremendous
success, and more importantly, the personal support I have received over the
last two years, but because this year, my best friend will be hosting a special
fundraising opportunity. Are you ready!!
On Sunday, November 4, Jeff Tisman of Jeff Tisman Photography
will be donating his services by conducting family portrait mini-sessions to
the first 10 people who make a donation of $250 or more, with all of the proceeds going to the
ALS Wing Fighters! For those of you who
do not know, Jeff is a multi-award winning photographer who has not only been
featured in many bridal magazines, but is well-known throughout the record
industry for his amazing rock 'n roll shots that have been featured in
everything from magazines, album covers, and on concert T-shirts.
Beginning at 11 AM, Jeff will take pictures of you, your
family, your dog, or whatever, in 20 minute sessions, on every half-hour. You will be given a link so that you can
access your pictures online and print at your leisure. First come, first serve, when it comes to
reserving your time slot. The sessions
will take place at my house, in the backyard (weather permitting), so as to
capture the fall experience. If weather
is a problem, the photo shoot will take place at Jeff's studio, located in
Kingston, New Jersey, just outside of Princeton. Don't waste this exciting opportunity to make
all of your friends and family envious, as I've done in the past, by getting
breathtakingly beautiful photos of your family.
Speaking of the ALS walk, as a reminder, the ALS
Wing Fighters will again be participating in the walk to benefit The Greater
Philadelphia Chapter on Saturday, November 3, 2012, at Citizens Bank Park (home
of the Philadelphia Phillies) in Philadelphia, Pennsylvania. For those of you who are never participated
before, I hope you'll consider joining us, and staying for our traditional
after walk tailgate. For those of you
who have walked with us in the past, I look forward to seeing you again. Remember, registration is necessary to
participate. There is no cost to walk or
to join our team and assist in raising funds.
You can register to walk or make a donation to our team, the ALS Wing
Fighters, by clicking the following link. ALS Wing Fighters
Thank you to everyone who is already signed up and to those of you who
have begun raising funds and have already made donations. I can't begin to thank you enough.
