Outside My Box

May 5th, 2008 – 10:26 pm

I am not quite accustomed to doing things outside the box, especially at my age. But as a 41-year-old with Duchenne muscular dystrophy, I figure that I am essentially living on borrowed time, so I have no excuse not to venture out of my comfort zone every now and then. That is why I decided not to kick and scream when one of my nurses offered to include me in something from her world. Over the weekend, she took me to see contemporary Christian music superstar Michael W. Smith in concert.

I must admit that at first I was rather skeptical about what to expect. I have always seen Christian musical acts as lame and musically unimaginative. Besides, I am used to attending rock concerts featuring huge headliners like U2, The Rolling Stones, Elton John, Pink Floyd and Bruce Springsteen, all of which could sell out 50,000 seat stadiums. This would be my first time seeing Michael W. Smith - who some might consider a star on the entertainment B-team, but a big name in his own genre - play the comparatively miniscule Northland Church venue in Longwood, Florida.

I was definitely out of my element in more ways than one. As I forged my way through the lobby before the show, I noticed a few notable differences between a Christian and mainstream concert. The souvenir display offered the usual concert fare like T-shirts, posters, CDs and key chains, but nothing was outrageously overpriced. The refreshments looked rather suspect as all-natural soups, sandwiches and smoothies - that had to be devoured outside the auditorium - replaced nachos, peanuts and hot dogs. Healthy food at a concert, and you can’t even eat or drink while watching the show - what gives??? Coke and Sprite was served over ice in small plastic cups and sold for a mere buck apiece at a tiny, portable refreshment counter that looked like it was on loan from the local Elks’ lodge. Beer could not be found anywhere! Seriously now, what kind of concert concession stand doesn’t carry alcoholic beverages??? I had further doubts about my overall experience when I failed to spot any hot chicks in scantily clad, slutty attire. Come on, no leather mini-skirts, fishnet stockings or stiletto heels at a concert??? No fair! I began to grow frustrated by the unfamiliar concert scene in the lobby until I reminded myself that I was in a house of worship where wholesome things are not uncommon.

The show itself was not nearly as bad as I had anticipated. Smith was in excellent voice, and his keyboard playing was exceptional. Smith’s no-frills band - comprised of a drummer, guitarist, bassist, violist and additional keyboardist - provided quality musicianship and the perfect accompaniment to his songs of praise, faith, peace, love and devotion. The video and lighting was simple, yet effective. And the fact that our seats to the sold-out show were third row center made things especially enjoyable. Smith is a nice guy who gave an uplifting performance. For an unusual encore though, he bestowed a blessing upon the crowd. No final, kick-ass song to end the show - just a blessing??? I felt cheated until I again reminded myself that I was in a house of worship where blessings are not uncommon.

It was my first concert where I could not recognize a single song melody or lyric. It was also my first concert held in a church. But I was happy to have traveled outside my box for a change. Life can get awfully boring if you don’t get to experience something new every once in a while. Will I ever again force myself to attend another contemporary Christian concert? Probably. Am I now a huge fan of this type of music? Well, I still think it is somewhat lame and unimaginative, so hell…uh, I mean heck no!!! I would much rather bang my head to some rockin’ live Metallica. Hey, I might be old, but I ain’t dead!

Yes, Another Bruce Blog

April 29th, 2008 – 6:51 pm
Filed as: Entertainment, Humor

Seeing Bruce Springsteen again in concert last week jarred my memory of the night I was fortunate enough to actually meet the man! It happened sixteen years ago during his Human Touch tour. Surprisingly, Bruce hit the road this time without his famous E Street Band. With the exception of E Street piano player Roy Bittan, he was flanked by a bunch of commercially unknown musicians. Ever hear of the legendary guitarist Shayne Fontayne? Uh, didn’t think so. Anyways, it did not really bother me that Bruce left his E Street buddies behind considering the thrill that was coming. A friend of mine, who went to high school back in the day in New Jersey with Springsteen and his road manager, made a few calls and scored me two tickets to the show, and backstage passes!

Just before the intermission, my nurse and I scurried towards the elevator where an arena official proceeded to escort us downstairs where we would hopefully get a chance to meet The Boss. The fifteen-minute wait in the area outside the dressing room seemed like an eternity! Then, with time running down, it finally happened. With his guitar in one hand, Bruce busted out the door and hurriedly approached the short corridor that would lead him back to the stage. His road manager stopped him and whispered in his ear while pointing to me. I was totally awestruck as Bruce began pacing briskly my way. I was in shock and at an uncharacteristic loss for words; I think my mouth was frozen agape. He shook my hand and rasped, “Hey there, what’s your name?” With my lower lip trembling, I muttered my name. “Scott, are you enjoying everything so far,” he asked. “Bruce, great show,” I spouted at the then forty-something rocker, “but you look tired.” He exclaimed, “I better not be tired ’cause I got another half a show to do!” He autographed my ticket stub, smiled and said, “nice meeting you”, before racing back to the stage to perform some more.

Needless to say, I was elated beyond belief! But when I returned to the disabled seating section to watch the rest of the concert, something dawned on me and I gasped. Did I just tell Bruce freaking Springsteen that he looked tired??? Did I just insult The Boss to his face when he was being so cool to me??? I was suddenly overtaken by a wave of embarrassment! Something musically profound like, “Boss, your series of licks on your Stratocaster during Human Touch was extraordinary”, would certainly have been way more appropriate. I was given a once-in-a-lifetime chance…to look like a real schmuck! Oh well, at least I got to meet him.

Bruuuuuuce!

April 24th, 2008 – 11:29 pm
Filed as: Entertainment

bruce-blog-pic.jpg

On Wednesday night, The Boss managed to bring down the house once again. On tour to support his latest CD release, Magic, Bruce Springsteen thoroughly electrified the crowd with two and a half hours of relentless rock and roll. He gave his usual all-out inspirational performance, and his legendary E Street Band never missed a beat! The aging E Street Band remains a huge complement to Bruce on stage. This familiar cast of characters, featuring singer/guitarist Little Steven Van Zandt, Big Man Clarence Clemons on sax, and drummer Mad Max Weinberg and the rest, is like one big, goofy family that made the 22,000-seat arena feel wonderfully intimate.

The show opened with a video montage of recently deceased longtime band member Danny Federici, as Springsteen sang Blood Brothers in the darkness in tribute to his dear friend. He followed with classic fan favorites like Badlands, The River, Prove It All Night, The Promised Land, She’s The One, and the rarely performed, Fire. But Bruce didn’t just rely on the oldies to carry the show. He threw in his more recent, The Rising, as well as Radio Nowhere, Livin’ In The Future and Devil’s Arcade from the new album.

During the customary long encore, Roger McGuinn - formerly of the sixties supergroup, The Byrds - and his jangly Rickenbacker guitar joined The Boss on stage for awesome duets on Turn, Turn, Turn and Mr. Tambourine Man. Afterwards, Bruce shocked everyone by doing Jungleland, a song he had not played live in years. Then the house lights came up and he belted out two of his gigantic hits - Born To Run and Dancing In The Dark - before ending with the Celtic sing-a-long, American Land.

Springsteen always aims to please and thrill the fans with his brand of spirited showmanship. It was my fifth time seeing Bruce in concert, but while he has aged, his act never seems to get old.

Stop Making Them Richer!

April 23rd, 2008 – 2:49 pm

Today I made my annual visit to the pulmonologist. The office was in its’ usual state of semi-controlled chaos, and was filled to capacity. Now, I’m not one for sitting in waiting rooms at physician’s offices as a general rule. I avoid waiting rooms like the plague simply because there I feel at risk of catching the actual plague! If I am going to the doctor when I’m ill, I don’t mind waiting rooms as much. But if I am there for a routine check-up, I tend to become somewhat germophobic. Call me crazy, but hanging out in a small, enclosed area with a bunch of infected patients spewing forth their sick upon me is not my idea of adventure! Instead of going into the room myself, I normally send my nurse to sign me in and wait to be called, while I bide time in the hallway or outside in the fresh air.

As I was out working on my tan while awaiting my appointment, I was watching people come and go from the office. I looked away for a moment and suddenly caught a whiff of smoke. I turned back to find a guy puffing on a cigarette. A minute later he returned to the waiting area. Then I saw another man emerge from the room, smoke a cigarette, flick it to the pavement and go back inside. Seconds later a woman strolled the sidewalk, stopped just short of the doorway, took one long, final drag before she put out her cigarette and entered the building. All in all, I counted seven smokers who were patients of my pulmonogist. Other than at the cardiologist or oncologist, or in the cemetery, I guess the only logical place to find a smoker would be in a pulmonology office. I could just hear my doctor imploring these patients to quit smoking. But they do not, and make repeated trips only to hear the same thing over and over again to no avail.

Then something struck me! The medical industry is making a solid fortune off of people with self-imposed illnesses, with smokers being just one example. Those who smoke chose to do so at some point, got addicted, destroyed their health and thusly require medical attention. Usually, people are just not thinking when they light up for the very first time. But if they are trained to think from an early age, then there might just be a lot more healthy adults walking the streets. Hey, we all know that healthcare ain’t cheap! And the only ones to benefit by self-imposed illness and disease are Insurance and pharmaceutical companies, physicians, hospitals, and medical equipment manufacturers and providers among others. We get ourselves sick, and they rake in the big bucks! How ridiculous does that sound? I suggest we all start taking better care of our bodies and stop letting the medical industry cash in on our own self-sabotage.

Mail From The Beyond

April 16th, 2008 – 10:32 pm

My mother sifted through today’s mail and found one particular envelope that struck a loving chord. It was an advertisement including a gift certificate from some mail-order meat company called Omaha Steaks. No, she doesn’t really crave steak, but what made this envelope special was the addressee - Joseph Sands. Joseph was my brother who succumbed to Duchenne muscular dystrophy as a teenager way back in 1974. I can’t even remember the last time I got to see his full name in print. The closest I have come is looking in the mirror and seeing his first name tattooed on my right arm - and even that appears in reverse! When my mom showed me the envelope with Joseph’s name printed in a small, fine, cursive typeface, she pointed out that it even resembled his actual handwriting. This gave me chills! First, the fact that mail came to Joseph Sands after all these years seemed a bit freaky. Then I thought that maybe Joseph himself had somehow arranged for this envelope to come from the great beyond, perhaps to remind us to remember him on his birthday, which is less than two weeks from today. Well, however the envelope got here, just seeing his name on it gave my mom and me a warm feeling inside. This just proves that fond memories of deceased loved ones can come from anywhere - even the U.S. mail.

Blogus Interruptus

April 14th, 2008 – 6:48 pm
Filed as: Life, Disability

I asked a fellow blogger with muscular dystrophy why he hadn’t posted anything new in months. He replied, “Life, that’s why.” He mentioned that he was extremely fatigued from looking for a job and a new place to live, and finding some good, reliable personal assistants to care for him. He needed these things to survive, and grew stressed and frustrated by this preoccupation to which most of his time was devoted. Naturally, blogging was just one activity that had to be temporarily put on hold until he could stabilize his life. I hated to see how life had hindered his brilliance as a writer and opinion maker. I hated to see how this intellectual person who is willing to contribute to society was stopped in his tracks. Life has a terrible habit of getting in the way of ability and drive.

Sorry I haven’t posted any entries lately (save for a brief announcement of my new photography website), but life intervened and held me up as well. Although I am fortunate enough to not be out there hustling to secure employment or someplace new to live, or hunting constantly for responsible hired hands to provide my care, I do have my own worries and responsibilities.

Early last month, I was diagnosed with an upper respiratory infection, which totally destroyed a goal I set for myself at the beginning of the year. I wanted to go through 2008 without getting a single infection, but apparently some bacteria had other plans. My doctor prescribed a 14-day course of antibiotics. Antibiotics have a strange way of curing you while wiping you out in the process. In that very same week, a series of dizzy spells, low blood pressures, and erratic pulses prompted my cardiologist to order me to wear a Holter monitor. This small portable device that resembles a pager with wired electrodes that adhered to my chest continuously recorded the electrical activity of my heart for 24-hours. I had to wait anxiously for ten days until my doctor read the results and reported back to me. When you have Duchenne muscular dystrophy, even the slightest cardiac glitch can raise an enormous red flag, and a ten-day-wait can seem like an eternity! The results were not nearly as bad as my sometimes hypocondriacal mind had anticipated. My cardiologist said that he found some irregularities in my heartbeat, but nothing significant enough to warrant further medical intervention. I felt like I had dodged a bullet, and was relieved to learn that my old ticker is still doing the job!

In addition to those issues, there were plenty of others. My chronic left leg pain flared up to intolerable levels, and forced me to pop painkillers, which were ineffective and left me nauseated and sluggish. One of my long-time nurses quit suddenly for personal reasons, causing me to seek coverage and change many of my routines. Now factor in van trouble, wheelchair repairs, ventilator maintenance, ordering and organizing medical supplies, refilling medication prescriptions, and getting to doctor and physical therapy appointments. It should be easy to see how I got behind on my blogging and numerous other projects.

Life certainly got in my way quite often recently, but now I am back in the swing!

Sands Alive Photo

March 20th, 2008 – 8:32 pm
Filed as: Fun, Life, Disability

Last month, I resumed my old hobby of photography by going on my first photo shoot in about nine years. I posted the details of the shoot on this blog, but did not show any of the black-and-white pictures that I took. One of my readers commented that she would love to see my work. This inspired me to launch a little website which will allow anyone interested to view my photos. Sands Alive Photo will serve as my gallery to show what a guy with Duchenne Muscular Dystrophy can do with a camera, a lens and a roll of film. Just click on the link below to see life through my viewfinder. Annette, this is for you!

Sands Alive Photo