 
Funny, how we see the ads, hear of events and drop the occasional quarter in a can at the local Quickie Mart. Yet what does anyone know about Multiple Sclerosis? So first up a description. Put simply, MS is your own immune system turning against you and consuming the Myelin sheath that is vital to the proper function of the brain. Still confused? Let's try a metaphor. Imagine that a large white lab rat, let's call him Twitchy, is your brain's custodian. His job is to keep things neat and tidy upstairs and to keep undesirable entities from entering your brain. He is literally the bouncer at Club Medulla. Yet some of us are not kind to him, through chronic infection, environmental toxins, and endless stress, we torture our custodian until he reaches the breaking point. Now Twitchy has always kept things tidy, but he's pissed off now and begins to tear up the place. Gnawing away at the wires upstairs, the damage is slow and methodical. With such stealth he chews away, slowly but surely stripping the insulation from the wires that control our very function. Eventually enough damage is done, and bare wires touching have a tendency to short circuit.
And so my story begins. Looking back I would say the damage had begun over a year before my first symptoms appeared. Little things like spilling a drink, forgetfulness, or stumbling up the stairs. These signs were too subtle to cause attention, to signal that something big was going to happen. And it did- that very morning of February, 11th 2003. I woke with a great soreness in my right arm, as if the whole night I was holding a heavy weight. But it was more than that, every muscle in my arm was in torment as if it had been torn off in the middle of the night to go and beat itself against every blunt object in the house. I went to the Chiropractor, had massage and saw the doctor. I was diagnosed with a rotator cuff injury and was sent home with some useless drugs to try to control the pain. Something was not right with me as my arm was drunk and had no coordination. Within 5 weeks the tremors had begun and Twitchy had revealed himself to me. So I return to the doctor this time seeing my regular physician. One look at my motor control and he tells me that this problem is neurological, that I need an MRI and a specialist. I wait in line and on the 1st of April I go into the machine for a look inside. A week later I have a diagnosis of probable Multiple Sclerosis and an appointment with Dr. Peter Kinkel in Buffalo. So off I went to the Dent Neurologic Institute to have a word with Pete. He had looked at the crappy MRI I got here in Lamestown and had reached the same conclusion, and so begins my trip through the medical fun mill. I return to travel into the can this time; I'm going to have a real MRI and an MRA so I lie there listening to the endless racket these giant magnetic beasts generate as they manipulate the water in my brain to produce an image. After an hour and a half inside the machine, I go off to have vial after vial of blood drawn as Pete has ordered some seventy different tests. Pete is soon to realize that I'm a very unique case. All my tests come back negative of course, but at least now with a better MRI, I can directly see the lesions in my motor cortex. Though the results are inconclusive, Pete's the man and orders up a trip to hell and back in the form of my first taste of four thousand milligrams of Cortical Steroids. Let's set the stage for a moment. You see, all my professional career I have been a one man production house. From sales to design, illustration to coding, I would handle it all and I never needed supervision to tackle a task. So I worked alone in my office with my marriage ended, but still dragged on once again. I was alone in all of this and no one was watching me. Nearly four months after my onset we were to do something about the swelling in my brain to attempt to give me my arm back. The nurse came, installed a shunt, and directed me on how to administer the drugs myself. Once again I use metaphor to try and describe the indescribable. Imagine having your brain doused in kerosene and set ablaze. In doing so, all the brain's systems get turned on full bore: you're starving, angry, happy, horny, manic, disenchanted, lonely.it goes on and on. Your emotional state is in constant ever changing turmoil. Plunged into pure insanity without a single person to look over me. I lived 11 days with little sleep engulfed in a hell's fire of complete disorientation. Twitchy, of course, became extremely pissed by the attack on him. My arm danced violently, my whole right side completely out of control. I survived the ordeal and afterwards things actually did calm down a bit. But MS loves chaos and it was far from done with me. As a graphic artist the loss of my right hand meant a total loss of mouse control, which for a digital artist is a cruel sentence. A major client left and work was way behind. I had always taken care of everything and now with the loss of short term memory I was dropping the ball without even knowing it. Sadly, no one was watching me. I return in July of that year to see my neurologist once again, as he is hankering for some spinal juice. So I go in for the extreme fun of a spinal tap. Now I'm a unique person and all my life I have noted that pharmaceuticals had little effect on me, so let's just say I have an amazing liver that can shred almost anything. Pete works for about an hour before he gives up and tells me that after ten tries "I can't get anything". So with ten holes in my back, I creep out of there with some useless Hydrocodone and an appointment to see another doctor who will try to tap me using a live x-ray called a fluoroscope. When I go to see him, he tries four times and after a half hour of digging in my spinal column he finally gets the juice. Of course the tests are negative, so in August Pete orders my brain fire-bombed again. This time they use Dexamethasone instead methylprednisolone. What made this trip interesting was the fact that the train never left the station. After the hell of my first trip this was literally nothing. I talked to Pete about this and he tells me that some patients don't respond to Dexamethasone. So the next month Pete orders a blast of the original steroids and once again nothing. It is now after years of wondering I finally had hard evidence that I possessed a unique ability to remove foreign compounds from my system. I guess that explains why I don't get drunk, and drugs never did anything. As Pete stated "Patrick you have a super human liver". Steroids would be administered another four times but it was useless. My system wasn't ready the first time, yet it's quite clever, resourceful - and a very fast learner. Needless to say they would never work again. Now my neurologist has a lot of toys in his arsenal so the next hell ride I shall take would be at the hands of interferons. Now I have to say drug companies are a severely fucked up bunch of people. When I go on Rebif and Betaseron they flood me with cubic yards of marketing. DVDs, tapes, books, fridge magnets, the whole billion dollar onslaught. Yet they only call to check on you during the first few weeks of the treatment. So each morning I must inject a syringe full of hot sauce into my belly, I carry out the task because I have no choice. Now depression has always nagged me from time to time and there were several events occurring simultaneously. My ex was on welfare in Pennsylvania and they had been taking 40% for nearly a year now. The business was suffering greatly and the economic pinch was really being felt. At least I was finally divorced. On top of all that I had been really hurt by a accidental run in with a highly unstable alcoholic wacko from Wal-Mart. So I felt it was to be expected and as my depression advanced, so did my sorrow. Yet the nurse never called again. They were receiving their fifteen hundred dollars a month for this stuff and it was "so long, enjoy the fridge magnet". My symptoms weren't getting better, in fact I was worse than before I started. I never forget the day that I went for that ride. Damn I've never done anything like that. It was something you would do many times a day without notice yet twitchy was pissed off royally that day and he had a surprise waiting for me at the top of the stairs. Tremors had been going on all day and just to make things interesting Twitchy bites my leg. Weeeeeeee like a Hollywood stuntman I go ass over teacup down the flight of stairs ending up a crumpled mass at the bottom. As I lie there in a heap staring at the ceiling, a wave of depression washed over me as there was no one to help me get up and I had no idea if I broke something. I began to cry as there wasn't even anyone I could call for help. I was so totally and utterly alone. After a while I managed to drag myself to the couch to assess the damage. I had completely thrown out my lower back, popped my shoulder out, and bruised most of my body, but at least I didn't snap my neck. To this day I take stairs slowly and carefully. A few weeks later came the day that I couldn't even recognize myself in the mirror what was going on with me. I couldn't muster even a drop of joy. So that night I began reading the mass of data that is the internet and by nights end I had an answer. I'm sure if I looked close enough in all that documentation they sent I would have found something akin to "look under the rock behind the file cabinet in the basement lavatory with a sign that reads 'Beware of the Leopard'" in there you will find a small envelope and inside would have been a single statement. "Interferons can cause extreme suicidal depression in 5% of cases." Gee thanks, why wasn't that printed on the fridge magnet? Needless to say I didn't have any chili sauce that next morning. It's now December and I am enduring brutal winter number two. With severe economic sanctions in place I would have to go another five degrees colder that year bringing the thermostat down to fifty. At least I wasn't being dragged down anymore, within a few weeks I started to feel joy again. Of course I talked to Pete about what was going on and he agreed with my prognosis. So it's time to get out the heavy weaponry to try and get things back under control. Pete had my IGA levels checked and they were a third of normal. Treatments had battered my immune system trying to suppress it and now it was time to completely obliterate it. Intravenous Immuno-Globlins, or IVIG for short, was the next step in my treatment. Now IVIG, or the Mongol Hordes, as I refer to them, when infused basically overrun your immune system by shear force of numbers. They take command and completely overpower your own rogue system. It's created by collecting the immune components from the blood of around three to four thousand donors then they run it through a magic coffee filter, dehydrate it and sell off for seventy five bucks a gram. On the 14th of December 2003, I'm scheduled in the infusion lab to receive $11,111 worth of the stuff. Over the next four days the two hundred and twenty gram loading dose was crammed in to me until I thought my head would explode from the massive amount of fluid that I had received. I managed as always and I felt more joyful everyday. It's funny, in my previous life there was never time, always rush rush everywhere. I couldn't stop to enjoy the subtle things nature gives us. That winter was cold and brutal and the house much the same. Yet I never had lived anywhere where it was forty five degrees most the time, and when your house is that cold wondrous things can happen. In my little coat on days when the temperature was below zero and the wind was whipping I would enjoy the intricate frost on window panes. Fluffy freezer burn would form on the hinges of my door in the kitchen and I could play with my own breath in the dark as I sat in the living room, huddled in my blanket watching my tapes of eleven year old television. Money was tight as hell and food in short supply I managed on old bagels and dollar cans of soup. I was isolated and alone, but at least I could taste the joy. Winter went very slowly, most of my efforts spent on finishing overdue projects. At least I knew I would have at least one visitor. That, of course, would be the nurse because the hordes must be replenished every month to be effective. At least with everyone else's immunity running through me I had already had everyone else's colds, so I really enjoyed the fact that I didn't spend all winter sick like last year. Spring eventually came and with it another MRI to see what Twitchy's been up to. It saddened me to look at my data. I had studied my MRIs thoroughly and with all we had done and all that I had suffered in doing it, my lesions hadn't budged, in fact I had a new one. Now though I am isolated and alone, I do have precious pals that I have known for decades. The most precious of all is Kya who at the time was chewing me out about my status and giving me the tough love I have always needed. So I made my first truly spontaneous decision. In 16 days I would leave to travel to Portland, Oregon for 3 weeks of rehab in the care of my most dear of friends. I did extremely well out there surrounded by love, I was able to beat my raging diet soda addiction. Most importantly she bought me a present I really needed. I went to see Dr. David and had chelation therapy to find out if I have heavy metal poisoning. After several days of fun the samples are sent off to the lab. Sure enough if I didn't have enough going on already I am harboring toxic levels of mercury. Oregon is a wondrous place and I so enjoyed my time there with new sights to be seen and places to visit. Yet Chaos and terror always follow me. My partner Larry had been distant the first half of the year and I finally was let in on what was going on. Larry was trying to work with another associate to form a new company so we could stabilize things, and for the first time in years there was the possibility of regular paychecks and new equipment. Whether this was a deception all along I shall never know. Yet serendipity is a very strong force in my life and after my return I'm scheduled to meet with Rufus, the new president, and discuss my part in this venture. So the night before, I grab my alarm clock and set it for 7am. When I wake the next morning, it's 8:45am. I had thumb over the light and it was set for PM not AM. I'm sure they were already pissed off when I took off to Oregon and I was probably doomed already anyhow. Needless to say, the business I had put eight years of love and sacrifice into was sold off and I wasn't invited. A college kid was my replacement and on the 30th of June 2004, I, for the first time, was without a job. Sure there were promises of lots of contract work and as an independent I could see more money. So I was deceived, and handed it over without a fight. Twitchy loves misery and he tore into me. Steroids were prescribed once again and again my super liver instantly shredded them. Blew the nurses mind on the second day when I took a nap while hooked to the machine. My system so effective in it's defense of my chemistry, I no longer even got that weird metallic taste in my mouth. Times were extremely difficult I had been paid less than seven grand so far that year and my creditors were not pleased at all. I clung on, cashed in IRAs and Life insurance policies, drove nowhere and ate little. Then the hot water tank after nearly 50 years of service up and died. I didn't even have a hot shower anymore. Yet I'm a master of plumbing so 75 feet of pipe, 39 fittings, 76 sweat soldered joints and 11 days later I had hot water once again. Took most of the cash from the Life insurance to do it, and it was done all during an MS fit, one handed and alone. Time for a trip to Big Lots for some dollar soup. Joy is where you find it. 
On my way home I caught something out of the corner of my eye and pulled over. You see when a house burns in Lamestown it does not go away quickly. It rots as a burned out shell, sometimes for years before finally being torn down. So what had caught my eye was a little tenacious flower trying to grow out of the burned fodder of the house it was next to. That flower was so much like me. Even though it lived in burned out desolation without care, that little rose still chose to shine brightly. I took him home saddened only for a moment that I had no one close to me I could give him too. Then I remembered someone who would really enjoy it. So the little pink rose was placed in a vase and delighted me everyday until it was gone. For the rest of the summer I would stop and feed and water it. So tempted to dig it up and bring it home, yet then it would loose all it's charm. In August, as the last of the dangling work was finished, I knew it was all over. They had no intention of contracting me, and other than the election I was without any income at all. So I march my ass down to Social Security and start the long and drawn out process of applying for Disability. On a whim I went to Toronto to finally meet my pal Andrea who also has MS, and was pivotal in helping me cope with all that was crashing down on me. I had a good time and got some really good criticism from her. After my talk I felt it was in my best interest to get the fuck out of Dodge and move to Portland. Yet Twitchy loves chaos and in the six weeks since the loss of my business he had gotten downright cruel. With that and the economic losses I was so very depressed indeed. Funny, so many times during the last four years that when I was at my very lowest my life would surprise me once again. How could I have possibly know in my moment of complete exhaustion and desperation that only seven weeks later I would go on an adventure half way 'round the world to carve Grumpkins in Hong Kong. I had made out there, thanks to charity from my pals and former clients, and with eleven dollars in my pocket I had managed to travel halfway 'round the world. It was an incredible experience to perform there and an incredible joy to see all those smiles from the thousands of people who came to see Fredie. Yet my fate was still waiting for me upon my return. Clutching my cash, I come home and paid off what I could so at least the lights would stay on. Alas, after falling several months behind I knew the inevitable was coming. For the first time in 20 years I was about to lose my vehicle. The Friday before I surrendered the Jeep I had to make one more trip. With every resource exhausted it was time to visit social services. I left there with $145 in food stamps a month, and heating assistance. At least I knew that this winter would be warmer and I could eat again. I believe that it was December when I started to feel it. Through the winter I enjoyed all the little things I never took time to notice before. Walking in the subzero cold to the store I marveled at the beauty of winter. From snow silhouetted trees to banks of crystalline studded snow I now had time to stop look and listen. Christmas was beautiful with 11 gifts from Kya and more from Barbara. For the first time in years I got out my little pink tree, decorated it and placed my precious gifts around it. Once again I was reminded though I live alone, have few visitors and have to deal with gnawing loneliness, I was certainly not alone! With monthly infusions of fresh troops, Twitchy only bothered me in the morning and after naps. I really didn't miss the Jeep as I really didn't have many places to go. Though stuck alone in my house, with no cash to speak of I was happier than I had been in a very long time. In fact it was the beginning of the infinite joy I feel today. There were still nagging issues to deal with as the ex had gotten herself pregnant while we were still legally married, so in the eyes of the state of Pennsylvania I was guilty until proven innocent. Creditors continued to call and the house slipped into foreclosure. Oddly enough this worked to my advantage as during all of this I was progressing through the system and Social Security had given me my first denial. I went to legal aid got myself some free representation. Now according to Clyde being in foreclosure makes me special and bumps my up higher on the list. So once again I wait, but no matter I finally get to go try to get my petition to overcome the presumption of paternity approved at Motion Court. I have been there three times already but that day fate was on my side, where in my previous attempts I was shot down for not having all parties present. This time it was different. We went in and the ancient judge, without saying a word, looked at my documents, signed a form and sent me across the hall. With great excitement I went only to discover that the adventure was just beginning as now I needed a "rule to show cause". No matter, as I was about to have my eyes pried wide open once again with a trip to Georgia to finally meet my precious pal Margie. 
Now several years ago I met Margie interestingly enough through this very website. In the time that followed a beautiful friendship formed due to the undeniable spirit that Margie has and the selfless kindness she has always given me. Once again after a life time of isolation, I traveled to enjoy the simple pleasure of just relaxing. I ate shrimp fresh from the marsh, amazing smoked meats and oysters I dug from the bogs myself. I met a venerable southern oak that had been looked after for over a hundred years. In the last three years I have met towering redwoods, ancient spruce, cedar and thousand year old junipers. Yet I had never met a tree with such breathtaking character. My time there passed far too quickly but I left full of the immense love that Margie and Jon had given me. Once again the joy within grows infinite.
Upon my return I get the letter stating that I finally have a court date with social security. As the winter melted away, the seventh of April arrived and I would finally have my day in court. Me and Bill, my surrogate brain, show up 45 minutes early. Since the woman in front of us has yet to see her interpreter, we go in early. In front of the Judge, Clyde gives his spiel and I answer the questions put forth to me. Then the fun part begins, as the independent auditor is here to discuss what jobs I could perform. So he begins.photocopy operator, telephone solicitor, furniture store clerk, fast food cashier and my favorite: potato chip sorter. Now he and the judge go back in forth removing jobs from the list due to my disability. Finally came the clincher, my need for absenteeism because of attacks, fatigue and infusion therapy. So the judge asked if any employer would allow the number of sick days I would require monthly, his answer: NO. Clyde turns his head and winks at me and I knew I just scored. The hearing adjourned and I was told that she would make her decision at a later date when she had received more detailed medical records from my neurologist. Eight days later I receive a letter stating that I had been granted full favorable status and was now officially a disabled citizen of the United States. I went to my appointment and got the whole spiel from my caseworker and within a few weeks I would receive my first retro check. Now all this time, the ax was coming closer and closer to falling and on June 6th my house was scheduled for foreclosure sale and soon I would be living in a cardboard box. My attempts to contact Lori, my HUD approved councilor, had been unsuccessful for 11 days now and I was growing ever more nervous as the date grew ever closer. Chase Home Finance is useless so I must rise in the ranks above everyone's heads and contact the corporate offices of Housing and Urban Development. With my phenomenal powers of cheese chasing and brute force tenacity, I get HUD to put their thumb down on Chase. They listened now damn it and with only 11 days remaining I sealed the deal that saved my home. It was pure exhilaration to have that weight off my shoulders. As you have noticed things have a tendency to get interesting for me and it seems that the chaos is going to go on for a while longer. On Memorial Day, I'm working in the yard and the phone rings. I go running and trip in the ivy. Of course I fall and land on a very hard rock. Ironically, they hang up and don't leave a message. I have permanently damaged my good hand for nothing. For a week I iced my huge swollen paw. The palm was a lovely purple and of course I have a super liver that can shred morphine so no relief from drugs for me. After a week of this I hitch a ride and go to the emergency room get x-rays and am told to come in at 7:30am to see the orthopedic surgeon. He looks at my films and agrees that I have one tough skeleton. He splints me up and I have another appointment in three weeks. It takes nearly three months to get my hand back; so much for the garden this year again. At the same time it ends up that Chase Bank can't even communicate with their own departments, the deal gets all screwed up, and takes six weeks to straighten out. With every triumph it seems chaos follows. I finally get my day in court- ironically with the same judge that shot me down twice. She had gotten a lawyer, and they did the job of producing the inch of bullshit it takes to accomplish anything these day. It was a simple over obvious affair. I got to see the fuckabilly that did the deed and needless to say after I shared that during conception, I was a quivering wreck unable to hold a glass of water let alone conceive a child without being there. Testing was granted and after about a month I got the letter with a 0% chance of being the father. After seven years, seven months, twenty two days, six hours and forty four minutes my hell with her was finally over. Hooray for me, I'm finally free. Too bad it would be short lived, as I was overdue for another taste of irony and that was exactly what I got. In November, New York State starting providing Medicare, food stamps and heating assistance based on the fact that I had no income. Later when I got SSI I heard nothing. Yet a month after I finally got the aid I so desperately needed to survive I received another letter. The New York State Department of Social Services after learning that I was receiving federal SSD immediately terminated all my benefits. In the eyes of the great Decision-O-Mat, I was now making $441 more than the limit therefore I get nothing. If I am to continue my coverage I must pay them 40% of my income. I of course appeal and await a court date, but my monthly treatments are now a thing of the past and I am on my own now. With my remaining retro monies I pay off all I can, even for a change spending a little on myself. It's great feeling to be in some new clothes as over 75% of my wardrobe no longer fit or had disintegrated I was jolly but so frustrated. As you can imagine there is more for me to endure in order to become infinitely jolly. I have periods of disenchantment and I was again so frustrated and alone. In these times I tend to write long rants for Kya to digest and offer compassionate condolence. During my writing I was thinking of something poignant that Margie had written. So I went off to the thousands of emails to try and find it. Serendipitously I ran into something she forwarded to me over a year ago. It got buried in the chaos and I never had a chance to read it. It was a poem called the "Train of Life". You can click and read it your self but I'm going to give you the first and last sonnets because that's all you really need to remember.
Time drifts by and I have another adventure on the horizon as my dear twin sister is finally getting married and thanks to Chase overcharging my escrow payments I have the cash to go there and walk her down the aisle. Arizona is an amazing state and nothing like the road runner cartoons. No travelogue, documentary or panoramic spread in National Geographic can ever prepare you for your first visit to the Grand Canyon. As I stood, wind whipping, on the edge of a rock staring down into something nature worked a billion years to create there are no words to describe it. All I could feel were the gushings of infinite joy. With each new sight I am dazzled again with the ever changing topography of that amazing state. I returned home so utterly full of joy. That Wednesday was my court date with New York State. Finally I can tell my side of the story. Yet where is my useless Indian paralegal Ranish Bagowani. I'm told that he wasn't coming, so I adjourned the hearing and had a chance to finally speak with Rita the supervisor. She laid it out for me: sadly, in my glorious state, the Decision-O-Mat is final. It does not care of my situation, the 30 grand of short term debt in collection, the $15,000 in federal tax liens or that simple fact that I require $45,000 a year in health care. No, it is a faceless bureaucracy gagged by it's own pointless protocols. I'm not Hispanic with a boat load of kids living as welfare lifers getting their shopping carts filled with money every month with out question. No I'm a single person who had worked all his career my monthly SSD is over the spenddown so you get nothing. Most ironic even if I could earn the $441 a month, the Feds would cut my benefits and NYS would increase my spenddown. Now five months without treatment tremors are on the upswing and I can't say if Twitchy's busy chewing once again. Without any assistance I will once again return the thermostat to fifty and surf the dollar isle looking for something to eat. No matter I'm sure there will once again be wonders for me to discover right under my very nose so once again I'm not worried. I can't concern myself with ifs whys or whens, it is of no importance. All that matters is embracing the infinite joy that shines within me. I used to spend so much time looking out the back of the train stuck in the past mulling over all that went wrong, torturing myself for all I didn't do. Today when I look back I see the path I have traveled, the great obstacles I have overcome, the incredible feats that I have accomplished. And I smile, as there is nothing on the road ahead that can even compare to the paths I have already traveled. That ladies and gentlemen is why today I'm infinitely Jolly. Thanks for listening, 
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