Before I begin, I must admit that I am overwhelmed and astonished by the touching and heartfelt comments that were left after the last blog. I am learning just how powerful words can be, especially when they are directed towards yours truly, so again thanks to all of you for your incredible support. Sure the blog is about me naturally, but use it anyway you can.
I have always been a very private person and have been innately programmed to persevere life with an almost discreet quality. It’s actually very unlike me to share myself with the world, so this blogging actually bears a certain foreign nature and an element of discomfort to me. In fact after posting it, if not for my claim to fame wife Linda, I would have deleted it without hesitation. I really am uncomfortable with public attention and much prefer going along quietly, efficiently, unhearldly accomplishing whatever it is necessary, without drawing attention to myself as that is to me much more comfortable and my “norm." It wasn't until my friends Meg, Dr. Roth, Linda and my amazing buddy Wheelchair Kamikaze (click here) , inspired me to express myself on paper for its therapeutic and rehabilitative properties. Ironically, the Kamikaze and I were acquainted during our attempt at CCSVI Liberation (which I will discuss some other time) where we chatted in Dr. Sclafani's Booklyn, NY office and joined the ranks of "successful failures" as he put it.
Anyway, Oprah Winfrey has without question brought popularity to the term “aha moment.” So much that several companies have ran with the coined phrase, leading to company slogans, and in some cases a cease and desist letter from Oprah and her team. I don’t believe she has a trademark on the phrase, and until today I don’t think I really ever knew what she meant. That was until I ran into Brenda.
I have been partaking in physical therapy at The Rehab Institute of Michigan every Tuesday and Thursday. It really is nothing more than a pain in the ass, driving to Novi in rush hour traffic, sitting amongst miles and miles of cars, unloading the walker and dragging myself into the facility like a deer that was spined by an errant bullet from a hunter, and complaining back and forth with all the other physically challenged patients. Nonetheless , it’s a necessity to use it or lose it, and today I was ironically actually excited to commence a different type of exercise, pool therapy: Turned out the pool was a cool 95 degrees, and other than my resemblance of Superman to kryptonite,(heat is not a friend of MS patients) it felt nice to actually “walk” unassisted. Unfortunately I couldn’t use the stairs to get into the pool and had to be lowered in by a mechanical device that looks like a lifeguard stand with a boom and plastic chair attached. The chair has a seatbelt and plastic guardrail that would surround my midsection and slowly yet methodically place me into the pool. It wasn’t a year ago I was swimming forty laps in an Olympic sized pool daily, unassisted, without any “lowering” devices.
My therapist, who shall remain unnamed, has about as much excitement in her as one of those dried up earthworms after a night of rain and a morning of sunshine. You know the kind that are dried up and usually run over by a tire? She walked me back and forth, stuck a few floaties around me, and stretched my legs a little. The heat of the water exacerbated my stiffness and spasms, and as my legs shook like a leaf on a tree in the gust of a windstorm, she barely noticed or commented, considering that delightful personality. After about twenty minutes she made her way out of the pool, lowered down the boom, and strapped the listless Greek back into the chair, raising me to the edge of the pool. As I was pulled from the water, the buoyancy diminished, and I returned to the overbearing sensation of trying to carry my own weight. After cooling off a few minutes I was wheeled off to the locker room where I was off to dress myself.
There was one of those long mirrors in the locker-room, and as I sat on the seat of the walker I caught a glimpse of myself in the mirror. I am not sure if it was the evidence of my shriveled and pail sunless skin, or the lack of upper body muscle that I once prided myself on that put me in a state of shock. “God you are melting away”, I thought to myself, “and you can’t even get yourself into the pool”, what a fucking joke. After a quick round of tears, I slid my ass from the walker to the shower chair in an effort to clean up before getting off to work. My legs were still in full spasm from the water and the clonus, or the series of involuntary muscular contractions caused by neurological illness, and as I sat in the shower my feet smacked the floor repeatedly, performing a tap dance with the tile floor to the likes of Bo Jangles. I showered, composed myself, made my way to the reception area, and sat in the chair for a little while, cooling down and reflecting on the strain of what was only the last hour. Man I could swear that took like three hours…I was beat.
Once my body returned to its baseline temperature, I again dragged myself to the car, but was interrupted by Brenda, wheeling herself along with her caretaker to her car. Brenda had a nasty MS Flare that left her completely unable to walk, and after spending almost a month in the hospital and therapy, she was rebuilding strength in an effort to care for her two young children. Not an easy task for a single mother and to top things off her employer is a real prick and hasn’t allowed her back to work. She is a Veterinarian by trade, and if she worked as hard for that prick as she did for her therapist than he must be a real jerk to push her away, obviously provoked by his own fears. Apparently the Vet clinic is not handicap accessible, and her boss is clear on the fact that he is keeping it that way. Clearly illegal and just plain bullshit to treat her this way, as she went on with the story there in the middle of the parking lot I experienced my “aha moment.” Here I just went through my own hour of hell, but fortunately I was heading to work, unassisted, probably shouldn’t be driving, but doing so nonetheless, and when I finally do make it to work I will be greeted with jokes and smiles and scooter my way to my very own office. The thing really flies too! Who am I to complain? She would love to be able to go to work and provide for her two kids, but between the damage the MS has caused, and her despicable, rotten, selfish, and uncompassionate boss, she instead will begrudgingly be wheeled to the car and driven to her home, wishing, hoping, wondering, and praying that just maybe tomorrow will bring with it an opportunity to get back on her feet. Literally.
As I sat in the car, air condition blasting on a 58 degree day, I couldn’t help but feel saddened for her and her misfortune, and I thanked the Lord for the blessings he has bestowed upon me.
Tuesday, April 26, 2011
Thursday, April 21, 2011
The following is an actual account of just one of my battles with MS. I was diagnosed only four short years ago and have gone from walking to walker/wheelchair...
Imagine walking the dog along with a loved one on a sunny afternoon enjoying the beautiful and soothing attributes of nature, practicing your ever so typical and God given rituals and realizing the very next moment a random and unmistakable sensation taking over your body like the fog rolling in on a lake during a damp and cool summer morning. The anxiety builds, you begin to sweat and strain as things that were once so simple suddenly have become increasingly and insanely difficult. You turn around and horrified you head home, immediately resting or popping a few analgesics, your trunk continues to send signals to your brain that it’s being crushed by something that you cannot see. You stretch and strain and reach and pull. You ingest a cool drink of water or apply an ice pack or a cold compress, but the assault continues.
You telephone a friend or a family member. Your mind races as you wonder if this feeling is going to subside or worsen. Will it be temporary or permanent? Is it a kidney? Is it your bladder? Is it something you ate? You find yourself in bed, self loathing, thinking of nothing other than your symptoms. The world around you continues. The birds chirp, the dog barks, your kids run in and out of the house. You pop a few more medicines, putting your racing mind at ease and sedating yourself to the point of unconsciousness like sleep to remedy the emotion and physical pain only to awake an hour later to realize you are experiencing the same feelings you had prior to your efforts. Your spouse observes your behavior in horror and urges to rush you to the hospital, but you have been healthy your entire life and what you are feeling has to pass, it just can’t stick around, nothing like this have you ever felt.
You agree to telephone the Dr the next morning if the feelings persist because you’re a warrior. You’re tough. Nothing has held you back against your control ever. Nothing health wise could possibly transform your agenda, but quickly and fearfully and without apprehension you must adapt or you lose your ability to participate in your world. You call friends and neighbors to assist your children in their prior commitments and you make appointments with Dr's that you can’t get into for months to come. You realize, if you are so fortunate you have your family to support you, and you continue to fight but something tells you that your world as you know it has changed before your eyes. You try to compose yourself but you are panicky and realize you can no longer walk on your own. You begin an emotional rollercoaster and experience a panic attack that creates angina. You try to stand as you were an hour ago but the pain is too intense and your spouse is forced to find assistance to move you around in your environment that unfortunately is ill adapted for this new condition. This is your new world and unless you take it head on you will never make it.
Multiple Sclerosis is a thief. It is a robber, a housebreaker, a hijacker, a burglar, a scrounger and a swindler just to name a few of its attributes. It takes otherwise happy and healthy homes and without prejudice or contention it demeans and deteriorates and debilitates as a tornado would do when tearing through a suburban neighborhood. It creates frustration, and feelings of abandonment. It delivers constant persecution and imprisonment. It takes healthy people and immobilizes and restrains and disables them. There are many that might say MS has enlightened them as to their prior insufficiencies, creating an almost re prioritizing of family values or personal importance’s. I am not one who subscribes to this mode of thinking. For me MS sucks. I am and have always been a good person, without improperly treating anyone or anything, a pleaser of sorts, and a peacekeeper. There are those that say everything happens for a reason. If someone can rationalize the reason for the annihilation of my physical functionality then I am all ears.
There is the frustration of experiencing discomfort while at rest. The frustration of pain and burning and numbness while trying to enjoy a night out with a loved one. Then there is the frustration of tingling or jumping eyes or color variation or the inability to stay awake due to overwhelming fatigue. The frustration of pseudo exacerbations while sitting out in the sun trying to root on a child involved in a sporting event. Pain a constant reminder of the assault on the body. Do these frustrations occur for a reason? Is this some kind of test of futility or viability or perseverance? I think not. The frustration is nothing more than another element of discontentment and affirms the randomness attributed to dealing with this atrocity or any illness. Whereas I have never been one engulfed in materials or lavishes or wants or needs, the simplicity of my innate demeanor has been redirected and deemed no longer recognizable. I commend those that have been stricken or plagued by illnesses that continue to live as normal or accept their unfortunate state in stride. I am elated for those that are lucky to be diagnosed with a mild form of this disease and live close to normal for years to come. I for one denounce this illness and refuse to accept its metamorphosis of my body. I will continue to fight night and day without compliance for as long as humanly possible. Many have told me the importance of acceptance, but to me this is merely approval or cooperation and I refuse to corroborate or assent to something so malicious, unpleasant, unscrupulous and despicable. Rather than regress and lament and continue to slowly perish to this creeping paralysis, I plan to brawl and combat and clash instead.
My earthly reward through my journey with Multiple Sclerosis would be nothing more than the encouragement and assistance of a reader of this story in battling whatever life has thrusted his or her way. The same ideals relate to the observations of my children. The simple fact is that relinquishing control to ones monster is not an option, and instead conviction, toughness, vigor and valor are a necessity. If it is the will of some higher power that I must surrender then it will not be without dissension and controversy. I will take the good with the bad, the ugly and evil with the exciting and hopefulness and in my mind shall picture the victory that one day I will acclaim. This achievement may be in this world or the next, and in the form of personal accolade and conquest or the resounding fulfillment of others. Either way it will be.