Throw my ticket out the window....

I’m not one to be over sentimental or make this blog some sort of monument to the things that simply mark my life. I have no intention to make this my diary or journal, it is just a place for a few musing or thoughts about the things that pass between my ears and stick. Things that I feel are worth mentioning. I need some sort of outlet, right? If I don’t, I get myself into trouble. Currently, I just keep reciting the Presidents of the United States from beginning to end.

Why you ask?

Well, because I can you see. That’s just how smart I am.

Honestly, it is really just a parlor trick. Anybody can memorize it, but for some reason I just keep getting the impulse to recite them. Maybe it has something to do with my hour car ride to work. A bald guy needs to fill his brain with something and I suppose it is better than spitting out the alphabet backwards, although I can do that now as well. Idle hands as they say. I figure if I could juggle while I drive then I might have an act. I could take it on the road….oh yeah, I’d already be on the road, but as per usual I am way off track here.

The reason I point out that my blog is not a place to be over sentimental or a monument is that I am about to do just that. Call me a fraud, call me a hypocrite, it’s fine I have been called it all before. I have also been called buttercup, but let’s not get into that.

The reason I write today is actually a serious matter. My Aunt passed away Monday morning due to complications of ALS, a very cruel and very swift disease that left her incapacitated for the last 6 years.

(Here’s a link http://en.wikipedia.org/wiki/Lou_Gerhig%27s_disease if you want to know more.)

Aunt Faye garnered one other mention here on the blog back in September as I went through my IVIG treatments. One of the nurses that worked in the infusion center where I took my treatment had also taken care of my Aunt at an ALS ward of one of the hospitals that she sought treatment and had remembered her. My Aunt was only 58 years old and for the last six years she sat in a chair unable to move, her only means of communication was to blink her eyes. But far more than the end, it was the beginning and the years before the illness that made such a deep impression upon me.

My Aunt and Uncle lived about an hour and half from where I grew up. We honestly only saw them and my cousin a handful of times a year: Christmas Eve, Palm Sunday, a few other random trips to the area, and a family party that found us leaving the soot and grime of Reading PA to relax at the oasis that was my Aunt and Uncle’s in-ground pool. You see where I grew up people didn’t have in-ground pools, and only a few people had above ground pools. Most of those you didn’t want to get into. So you can understand my excitement at having free reign at what seemed to me to be a private resort.

This resort came with every amenity: more food then you could eat, more soda then I could drink, and I know this to be true because I gave it my best. Although truth be told my Aunt had a full supply of Shasta. I’m not sure who actually drinks this stuff, but for whatever reason she had a ton of it, and to top it all off a traditional water balloon fight between my Uncle and I. It generally ended with him pushing me into the pool. I was happy regardless.

Though the times may have been few they were always deeply anticipated. I looked forward to Christmas Eve like most kids not only because I knew there were a ton of presents coming my way, but upon waking I couldn’t wait to get to my Grandmother’s house because I knew that Uncle Paul and Aunt Faye would be there. My grandparents only lived two blocks away so as soon as I heard that they had arrived I cleared my throat and with my most annoying voice became the bane of my parent’s existence until they broke down and sent me up the street. Of course the lure of presents, my grandmother’s cooking, and the never ending supply of Coke a Cola never hurt, but it had generally been a few months since I had seen my Aunt and Uncle and I bet they had something to show us.

You see Aunt Faye always had a knack of finding all kinds of crazy puzzles and games to occupy us. I suppose it was her feeble attempt to keep us out of the living room shaking the colorfully wrapped boxes whining incessantly, “when are we gonna open presents? when are we gonna open presents?”.

It worked… sometimes.

I can remember her showing us those ridiculous magic eye puzzles, Games magazine, and any number of brain teaser that she could find. I was never real good at them then, but I can always remember sitting in the backroom of my grandparent’s house, with a cacophony of odor slipping from the kitchen, and my Aunt helping us solve some sort of grand riddle. Furthermore when we did rip into the presents, the multi-colored paper now laid wasted on the floor to reveal something so spectacular that even though you didn’t know it, it was exactly what you wanted, and precisely what my Mom would have never bought us because it was “too messy”.

When I was older and I began to get presents that were “age appropriate” I was a bit sad. While those sweaters were real nice, and I wore them all the time, they didn’t have the same punch as the Fisher Price Printing Press and the stained blue fingers that it produced.

When my boys were born I stopped into the hospital gift shop and found an issue of Games Magazine. It reminded me of those days, how they had passed, and it made me wish that my Aunt was able to come and visit us.

Aunt Faye was nothing but fun, and if she was there I wanted to be near by. I remember as a boy how my Dad’s cousin had asked me to be a ring bearer in her wedding. Now this was all fine and good, but I was six and being six you don’t really understand what is going on. Furthermore you don’t understand that the white tuxedo that you are dressed in is rented and needs to be taken care of.

This was a Catholic wedding and as is evident from the length of my posts Catholics are not known for their brevity. I had to sit up at the alter, in a chair that I am imagining was probably used in the Spanish inquisition due to its comfort. Never had I longed so deeply for the hard wood of the pew that my sister and cousin had the good fortune of sitting in. I suppose they expected me to behave, and I guess I did. My Uncle Sam only had to come up like three times.

Nevertheless, after we went outside and were all pelted with bird seed (Of which I ate a ton of. What? I was six and I was starving. Do you know how long that mass is?) the wedding party piled into a waiting limo that whisked them away to the reception, but I stayed behind opting instead to ride with my Aunt and Uncle in their car.

The reception was a drag to a six year old so Aunt Faye and I snuck outside and she let me tear through the grass like only a six year old can. Here’s where the problem comes in: there was a lot of “sliding into second base”. Allow me to remind you I was six, wearing a white tuxedo and I had no idea that grass could pose a problem to fabric. Again, I ask you who allows a six year old to take part in these things?

Needless to say both my dad’s cousin and my mother were pretty pissed when I came walking back into the hall drenched in sweat and a white tuxedo that looked like the swamp thing had just disrobed. I began to hear the things that a small boy hears when he has made a bad (albeit honest) mistake. Aunt Faye just smiled and whispered to me, “We’ll tell the rental company we had a problem with some guacamole.” Now, I had no idea what guacamole was at the time, but what I did know was that Aunt Faye had my back and guacamole or no guacamole it sounded like a solid excuse to me. Now, though, at 31 years old, looking back I’m not sure how the rental company would have cared whether it was guacamole or grass stains, their tux was ruined. I wonder whatever happened with that…..

When I was grown I moved to Philadelphia, much closer to my Aunt and Uncle. I began to see a bit more of them, and felt that my relationship was getting closer to the way I had always hoped it could be. However, it wasn’t long after my relocation that my Aunt started to have problems. It wasn’t my business and I would be told what I needed to when I needed to know it. I don’t remember when I found out that it was ALS, nor do I remember when I realized how serious it was, but quicker than I had ever imagines my Aunt was being taken away from me and the rest of the family.

Once Aunt Faye was in her chair but still able to speak relatively well I sat with her for an afternoon. We didn’t talk much about the disease, just about what I was doing and what I was trying to accomplish. Actually most of the time was taken up with her typing rude things about my Uncle and dad into her new voice computer. When they came back from picking up lunch she unleashed a barrage of digital epithets that were less then flattering. She had a great sense of humor (you have to to survive in my family) even when she was incapacitated in her chair. My Uncle would show her a board with the alphabet written on it and she would blink as the letter she was looking for was spoken. You would write the letters down and read what it was that she wanted to say. This was a slow process and sometimes very frustrating, but there were many instances that she made a mistake that I believe was on purpose just to confound my Uncle.

The last time I saw her was at my cousin’s house. The summer party had been moved there despite the lack of in-ground pool (a bit of an oversight that I will forgive them). As my Uncle helped one of my Aunt’s nurses load her into the van at the end of the day I walked with them. My wife was very pregnant with our boys at the time and I said to my Aunt, “I’m gonna try to come out and see you before the boys come, because God knows what’s gonna happen once these two monsters are unleashed.” I could see her smile, if only in her eyes, but it was a smile. Sadly I didn’t get out to see her, and once the boys did come time was non-existent. I kept saying to my wife that we really need to take the boys out to see my Aunt, but it never happened. For that I am sorry.

I am so sad that she has passed, but what is far more devastating is the loss of time. Which I suppose is always the true shame of death. I wish I could have talked with her. She was unable to speak when I was diagnosed with MS in 2005, and she was one of the few people I thought might have an insight to the road that I was walking down. While ALS and MS are very different diseases there are many similarities in the pathology, but more important the psychology. The things I think and feel I would imagine she went through, on some level, as well. I like to think we could have helped each other in some way. At the very least I know she could have helped me.

Although perhaps she did help me in just being as she was. We look at the people as we loved them, we look at ourselves, we hold memories and images in our minds and hearts and despite the fact that they are unable to be themselves I always imagined she was who I knew her to be. She was just unable to express it in the way that I knew her to before. Locked in they call it, and I think that it actually applies to many of us. We were locked in to the image that we had already lost; an image that had made an indelible impression upon me and one that I didn’t want to lose. Yet now there was a new version of my Aunt and I’m not sure that I was ever able to adjust to the changes.

Yet, many of the same changes are affecting me now. Not in the same way and if it all goes well they won’t be as destructive, but I remember my Aunt’s cane and then her wheelchair and neither of us aware at the time that these events would be so relevant to me today. I look at so many situations now with a deeper scrutiny an intense yearning, and I wonder what she would have said to me. Would it even have been remotely relatable?

I do look, though, to what she did do. How she was able to stay here with us for as long as she did inside of her own body. The strength she proved to us with out lifting a finger, the grace that had shown so brightly though she couldn’t breath on her own, the truth that despite what problems beset us our spirit can always be stronger.

So, go to your dad’s record cabinet (or your own, that’s my plan) pull out Bob Dylan’s Nashville Skyline, (which you undoubtedly have) once Aunt Faye told me that this was her favorite record, put the needle down and raise your glasses high. Drinks are your choice…..I think I’ll have a Shasta.

Here is to my Aunt Faye

All my deepest love, respect and thanks