My Good Friends

Something I sent to a few friends/family on 6/13/09.  I am including it here for posterity sake.

Hello all,

I’m not really sure how much longer I will be here so it’s probably better to say a few things while I still can.  This is not meant to make anyone further worry about my situation but hopefully will provide you closure that only this technological day and age can provide. 

I sent a link around from Patients Like Me (I can send it again if you thought it was SPAM) but in a nutshell I have MSA (multiple system atrophy).  From what I can figure from the literature (and of course my own experience) my brain is disappearing or shrinking.  Since I need those brain cells (and they are slowly doing this by the way) to do even the simplest task, I will someday not have control of even my involuntary muscles.  Right now, after about 30 seconds to a minute, I lose control of my arms and legs (they move on their own), my ability to chew and just about anything you just tell your body to do.  I used to type 100-125 wpm.  Now I hunt and peck about 5-10 and stop often.  I haven’t driven in 2 years.  I don’t leave the house except to go to doctor appointments.  I don’t have health insurance any longer as my wife lost her job and I make too much (>$12K/yr) to get help from VA (thank you George!  Let’s save money, not help people).

I spend my days surfing the web (now that I have a laptop), watching TV and updating IMDB, napping and taking bathroom breaks, drinking something when I can (Hawaiian Punch or water but nothing carbonated) and eating (usually crackers).  I don’t cook or prepare anything as that is too difficult but I have nuked a TV dinner if I feel I will last.  I dream as though I’m fine so it’s a bit disconcerting waking each day to my nightmare.  I can get really depressed when I watch a sad movie but generally just feel fair to midlin’.  I don’t remember the last time I laughed or smiled.

I haven’t bathed in almost a year but we don’t have a bathtub any longer either.  It was replaced last Fall with a walk-in shower minus the handles I asked for which wouldn’t help me much now anyway.  My wife complains that I stink or my stench is ruining the couch but isn’t willing to help me use the sink to give me what I need.  Scraping my skin with my nails is the best I can do although I did my best last week in the sink and that felt better for a few days.

I’ve tried to get to a home in Elizabethtown, PA (where I went to school) (also the original homeplace of Jon & Kate + 8) but either the doctor or the home isn’t cooperating.  Not sure now how I would get there anyway.  Last year when I started this process I figured I would cross that bridge when I came to it.

I will do my best to keep the PLM site updated when I can.  You can of course send me an email and I will reply as long as I’m able. 

For those who knew my family, here’s an update:  My mother passed 11/9/04, 10 days after my brothers and I visited her and after a very serious operation.  My sister Dara was the executor of her estate and except for one phone call in December of ’04 to try to clear up some confusion regarding her will, this was the last time we spoke.  I’ve tried to look her up since then with no luck.  My brother David and I have not spoken since last summer.  I still don’t know why.  I haven’t heard from my oldest brother Dane in almost two months.  In ’05 my brother Dave and I kept Dane in his apartment for 4 months after he lost his job.  The first time he tried to give me money, I told him to not worry about paying me back until after he was on his feet.  Over the past year he has slowly stopped dropping by after assuring me that he was going to visit his disabled brother every day he could.  Why both of them moved to Indiana is a mystery to them as well as me.  David never had a girlfriend here that I knew of and except for last year, Dane hadn’t either until he met this girl who is several years his junior.  Before that he was married a few years to a Korean girl who said she just used his Navy connection to move to US and become a citizen.  It’s like that sometimes I guess.

For those of you who have kept in touch using Facebook, I don’t use that any longer.  The simple reason is that I feel this site is more for family stuff and upbeat banter.  That just isn’t me anymore.

I haven’t spoken much about my religious leanings since I don’t attend a regular service anywhere.  I don’t feel this makes me a good or bad Christian.  It doesn’t mean I don’t believe in Jesus or God because I do.  I just didn’t feel the need to reaffirm that belief each Sunday.  I just didn’t seem to get out of each service what others seemed to.  As I didn’t feel what they did I figured I would be hypocritical to attend and not share what they were sharing.  I’ve actually attended quite a few services from a lot of faiths: Christian (Baptist, Methodist, Protestant, etc), Jewish, never tried Muslim, Buddhism, Hinduism or other European/ME types, although I met quite a few people who were good who did. 

If I brought some joy or relief to your lives, this should be my legacy.  I hope I haven’t been a burden or disappointment to anyone during our journey as this is definitely not the impact I wanted to have on anyone. 

Gee!  This was meant to be a short message but I guess given the chance I’ll blather on.  I may send another communiqué god permitting. 

Feel free to use this address to communicate or text me on my cell (max 160 characters). 

Take care!

Drew (DCal/DrDOS)