Jun 4 (1 day ago)
Tuesday, June 5, 2012
Posted: 04 Jun 2012 01:04 AM PDT
The progression of disability brought about by progressive MS can be likened to the circumstance of a bucket placed under a leaky roof, slowly filling with water. The level of water rises almost imperceptibly with each drip; slowly but surely, however, the bucket reaches the point at which it can hold no more water, and the next drop causes it to overflow. That last drop, which sends liquid cascading down the sides of the bucket and onto the floor, is a tipping point, the moment when what was once indiscernible suddenly becomes impossible to ignore, and adjustments must be made.
Much like the water in that bucket, the level of disability in a patient suffering from progressive MS proceeds ever so slowly, invisible on a day-to-day basis, sometimes barely noticeable even week to week or month to month. This gradual progression can lull one into a false sense of security, fostering the desperate hope that maybe this is as bad as things will get. And then it happens, a moment when the bucket overflows and the disease gets its jaws around you and shakes your world like a terrier delivering the coup de grace to some unfortunate rodent, and the patient is left to process this new normal and try to make the changes necessitated by it.
I've reached a number of such tipping points along the path down which my disease has led me: The time at work when my "dropped foot" caught on the hallway carpet and sent me into a stumbling, flailing, long-distance attempt to keep my balance as I lurched forward, almost landing in the arms of none other than Tony Bennett (I worked in one of the major audio/video production houses here in NYC), an incident that convinced me of the need to get my first ankle brace, which I'd been vehemently resisting up to that point; the moment when it became clear that simply getting to work was taking so much out of me that it was negatively impacting my health, and I applied for disability; the day I realized that I could not walk anywhere, even in my apartment, without holding onto the furniture, a wall, a doorknob, or some other stable object, and I caved and ordered my first cane; another day some year or so after that, when, at my wife's urging, I finally admitted that even with a cane I could not make it more than about 100 feet, and I reluctantly started the process to purchase my wheelchair, an act that at one point had been almost unimaginable, the stuff of nightmares.
Each of these incidents was preceded by a period of relative quiet, when I went about my usual business, however restricted that business might be. As my right arm and leg weakened, my left side took up the slack, and even though I am a born righty I learned to use my left side rather adeptly, even training myself to be a passable lefthanded chopstick user, a very important skill for a fan of all foods Asian. In retrospect, I did notice some of the incremental changes as they were happening, and sometimes even voiced concerns about them, but since these tiny deficits didn't force the issue, I could halfheartedly convince myself that I was just having a bad day, or maybe I'd slept funny, or perhaps I'd caught a little virus or cold that was weakening my system. Inevitably, though, the time came when the bucket overflowed, and some new tools, both emotional and mechanical, were needed to clean up the mess.
I recently experienced yet another tipping point, one that I'll admit has been more than a little unnerving. One of my favorite wheelchair journeys has been a trip to Central Park's Conservatory Gardens (click here), which are located about as far away from my apartment as you can get in the wide expanses of the Park, requiring a round-trip journey of about 8 miles. The gardens are a treasure, and a fair number of the photos included in my "Wheelchair Kamikaze Photo Gallery" were taken there.
Because my wheelchair can travel quite fast, 8.5 mph, I was able to cover the distance from my building to the gardens in about 25 minutes, and indeed the chair has allowed me to explore parts of the Park that many of my walking friends have never accessed. I took great pleasure in my jaunts to the gardens, not only because of the beauty of the destination, but also because, in a sense, they showed me and my chair to be more able than disabled, at least in certain circumstances, and actually earned the envy of some of my able-bodied friends and family.
I had last visited the gardens sometime in late October or early November 2011, when they were ablaze in a natural fireworks show of multicolored chrysanthemums and autumn yellows, reds, and oranges, the chill in the fall air making my journey there all the more bracing. Last month I attempted to make my first trip of 2012 to the gardens, eagerly anticipating the springtime visual fiesta that was sure to await me and my camera. While traveling full throttle through the Park, using my "good" left arm and hand to manipulate the wheelchair's controller, I noticed a strange sluggishness in my fingers and hand. When I arrived at the gardens, I took out my camera and set it up on the tripod mounted to the arm of my wheelchair, and started taking some photos, but for the first time experienced some real difficulty manipulating the controls of the camera. Still, choosing willful ignorance, I forged ahead, snapping pictures and scooting around the beautifully landscaped setting.
I soon needed to change lenses, and that's when the real trouble started. I had an unusually hard time taking off the lens that was already mounted to the camera, and in doing so dropped the lens, which luckily landed softly in my lap. I grabbed for the lens as it fell from my hand, though, and in doing so my wedding ring flew off of my finger, bounced off the chair, and landed deep in some bushes or flower beds. I spent the next 45 minutes using my cane to shake the shrubberies and gingerly poke around the flowers, but to no avail. Hard as I looked, I just couldn't find the ring. As daylight quickly faded, my heart sinking, I finally had to admit that the ring was lost. Yes, a wedding ring is only an object, and even though it had tremendous sentimental value, it can be replaced. At that moment, though, that ring represented so many other losses that my wife and I have suffered through the years courtesy of my disease. I was diagnosed only one year after Karen and I were married.
Deeply saddened and cursing the universe, I gave up my search and started the trek home. My left arm and hand were growing less responsive with each passing minute, making it difficult to control the wheelchair. When I finally exited the park and headed down the city streets to my apartment building, my hand decided all on its own that it didn't like the direction I was traveling, and I swerved right into the side of a building, hitting it with a clattering thunk. Luckily, no damage was done to either the chair or my body, but the message was unmistakably clear: my left side is falling victim to the disease, just as my right side did, and the ticking clock that I share with all who suffer from progressively disabling disease grew exponentially louder.
I won't pretend that I handled this incident with bravery or grace or heroism. It shook me to the core, and was the source of heart wrenching dismay and a good long bout of soul-searching. This time there is no magical piece of medical equipment to help me adapt to the situation, my new normal can only be countered with attitude and acceptance. In reality, my situation the day before the incident and the day after hadn't really changed, only my awareness of the circumstances were different. The enemy known is better than the enemy unknown, and at least I can now say with certainty that my left side is weakening, a fact that had been unable to be confirmed by previous physical testing. On some level, I've known this reality for several months, regardless of subjective test results. Nobody knows our bodies better than ourselves, and we notice incremental deficits far in advance of them being obvious to outside observers.
I now have to resign myself to the fact that my wheelchair trips can no longer be open-ended, restricted only by the juice left in the chair's batteries. I have to be aware of the limited functionality in my left side, which gets worse as the day wears on, and allow myself to rest when necessary. My left leg is also noticeably weaker, making it harder to compensate for my useless right side, so I'll need to be all the more vigilant when standing, taking a few steps, or showering, so that I don't tumble to the ground. This is the hard truth of the situation, and no amount of wishing, hoping, moping, bitching, complaining, cursing, or sulking is going to change that.
I will do my absolute best to operate within the confines of this new normal, and will not be defined by what I can't do but by what I still can. I might not be able to travel to the far reaches of Central Park, so instead I'll have to explore the many acres closer to home, some of which I've overlooked because of my ability to travel far and wide. I won't stop taking photos, I'll just have to be more diligent about setting up the camera and manipulating its controls; perhaps this will lead to a more disciplined approach and some better photographs. I've also having issues with increased levels of MS fatigue, which can be just as disabling as weakened arms or legs, so I'll work with my body instead of fight against it, and understand that in my new normal "carpe diem" might sometimes mean spending a day or two doing nothing but catching up on missed movies or shows about ancient aliens on the History Channel.
I'll continue to vigorously pursue treatment options with the physicians working on my case, and will be an even louder self advocate than ever before. New treatment options seem to constantly present themselves, and I'm currently trying two or three outside the box approaches that may be longshots, but every so often longshots come in, and when they do they bring with them great rewards. Most of all, though, I will focus on each passing moment, occupying it consciously and as fully as possible. The only thing that can be done about past regrets is to learn from them in order to live a more fulfilling present. The future is a great unknown; some people who are perfectly healthy today will be dead tomorrow, and if life has taught me anything it's that our paths are made up of nothing but blind curves. I'll practice kindness to others and, perhaps more importantly, to myself.
I know for sure that there will be more tipping points in the future, but I also know that they don't necessarily have to be negative ones. With due diligence and some good luck, perhaps my next tipping point will be a positive, liberating rather than confining, and my next new normal will be a return to an old normal. Tomorrow's story has yet to be written, and yesterday's setback may require adjustments, but does not necessarily have to be a harbinger of things to come.
Time to get a new bucket, and to keep on trying to figure out how to fix that damned leak.
Wednesday, April 4, 2012
AP Photo/Amy SancettaTiger Woods, shown in 1995 with his dad Earl, is one of Earl's four children. Since their father's death in 2006, the others have not heard from Tiger.In San Jose, Calif., this week, Kevin Woods will sit in his wheelchair a few feet from his television, watching his half-brother play the Masters. He has to. He can't see otherwise.
Can't stand much lately, either. Can barely use his left arm at all. He can feel his hands and feet going a little more numb every day. Kevin was diagnosed with multiple sclerosis in 2009, and it's not getting better.
"I'd say 60 to 70 percent worse now," says Kevin's brother, Earl Woods Jr. "He's not going to be able to keep his house much longer."
All three men had the same father, Earl Woods, but Earl Jr. says they haven't heard from Tiger since they buried Earl's ashes in Kansas six years ago.
"I leave messages," Earl Jr. says. "I leave updates on Kevin, but for whatever reason I don't get a response. … Kevin loves Tiger. A call from Tiger would really pump Kevin up. When he doesn't call, it just makes him feel worse."
Earl Jr., Kevin and sister Royce are the children of Earl Woods and Barbara Gary, of Kansas. They're 20, 18 and 17 years older than Tiger, who is the offspring of Earl's second marriage, to Kultida Punsawad. Though they lived in different houses, the four kids visited often and say they remained close until Tiger turned "about 15 or 16," Earl Jr. says. "But the more universal Tiger got, the less we heard from him."
Royce, who also lives in San Jose, stayed close with Tiger during his two years in college, fixing him meals and doing his laundry. In thanks, Tiger bought her a house. But since the funeral, none of them have been able to contact him.
"I would live in a shack," Royce told author Tom Callahan for his 2010 book "His Father's Son," "literally a shack, if I could have my relationship with my brother back."
Since his MS diagnosis, Kevin Woods has had to quit his job and is in danger of losing his home.
The three have stayed almost entirely out of public view. None of the three have written a book, and they are rarely quoted.
"We haven't asked Tiger for a dime," says Earl Jr., who lives in Phoenix. "Not even tickets to a tournament. But Kevin's losing his home. He needs a caregiver and he can't have a caregiver and keep his home at the same time. And we can't do that, we don't have the means. He can't move into Royce's house because of the stairs. And he's got a dog.
"Nobody's asking for money here, but [a caregiver] really would be nice for Kevin. It would make Kevin comfortable. He wouldn't have to leave his house. … But we'd at least like to be able to find out how Tiger is, to find out if he's OK, and to let him know if we're OK."
A spokesman for Tiger said that he's preparing for the Masters and wouldn't be returning my call to talk about it.
Tiger is not without a heart. His Tiger Woods Foundation has reached millions of young people around the world. But there has clearly been a falling out between Tiger and his half-siblings, and nobody seems to know what caused it. Tiger is close with Earl Jr.'s daughter, Cheyenne Woods, who attends Wake Forest and won the 2011 ACC women's golf championship.
"Tiger had Cheyenne down to Florida for three days to spend Thanksgiving on his boat," Earl Jr. says. "I asked her [afterward], 'Did he ask about us?' She said, 'No.'"
Royce is Kevin's caretaker now, taking him to his appointments and seeing to him. She also tended to Earl Sr. in his last years as he fought pancreatic cancer, even moving into his house in December 2005.
Since his diagnosis, the 52-year-old Kevin hasn't been able to work. MS is a genetic disease that often comes on later in life. One of Kevin's cousins also got it, in his mid-40s.
"We see him suffering," says Barbara Gary Woods, 78, who lives in Modesto, Calif. "He can hardly walk. Can't hardly hold things. … I'm very disappointed in Tiger. Before he got all famous, they were in touch a lot."
The wall that's up between Tiger and Kevin burns Earl Jr.
"I'd like to [slap] Tiger, wake him up," he says. "I'd like to say, 'Don't come knocking on the door when you need a bone-marrow transplant.' To see this is the response we get? Maybe when you see the world like he does, you don't see what other people are going through. But, seriously? You've got problems with your knee? That's nothing compared to what Kevin is going through. Nothing."
I can't help wondering what things would be like if their dad were still alive.
"A lot different," insists Earl Jr., who looks a lot like his father. "My dad was a bonding agent. He encouraged us to keep in touch, protect each other, circle the wagons."
For Kevin's part, he tells his siblings that Tiger must be busy. He has not asked Tiger for anything and has not tried to contact him. He remains a Tiger fan and will have his face close to the TV as Tiger attempts to continue his comeback at Augusta.
Of course, some comebacks are harder than others.
"To get something you never had, you have to do something you never did" When God takes something from your grasp. He's not punishing you, but merely opening your hands to receive something better. Concentrate on this sentence. "The will of God will never take you where the Grace of God will not protect you." Something good will happen to you today, something that you have been waiting to hear. Please do not break. Just 27 Words, 'God our Father , walk through my house and take away all my worries and illnesses and please watch over and heal my family in your name, Amen.' This prayer is so powerful. Pass this to 12 people including me. A blessing is coming to you in form of a new job, a house, marriage or financially. Do not break or ask questions.. This is a test. Does God come first in your life? If so, stop what your doing & send it to 12 people now. Watch what He does
Wednesday, March 28, 2012
Everyday I take Baclofen, Gabapentin, Tramadol,Provigil,Warfarin, Pravastin, Zodipen,Low Dose Naltraxen. All over the course of the day. Has anyone on this blog experienced slowly weening themselves off any of these drugs? Some days I feel that I would be better off and more clear headed if I could reduce of eliminate all these poisons. Some people with full time jobs don't work as hard as I do medicating. lol
Tuesday, March 27, 2012
Went to a new massage therapist this morning bright and early. I haven't indulged myself with this pleasurable experience for almost 2 years. My body, the muscles, joints and skin all feel so reinvigorated. Why I have deprived myself this relief I don't know, just so frugal is my only excuse. For anyone that is reading , take my advice and treat yourself to this stress reducer at least 1 time per month. You will be glad you did. By the way it was only $70 for a hour. Insurance should cover but mine doesn't.
Saturday, March 24, 2012
The Success Cycle
You Can Sell Anything With This System
By Roger Cawiezell, CLU, CHFCWith an enviable track record in sales any beginner or continuing professional salesman would want to emulate, Roger Cawiezell has written The Success Cycle to muster in one book the formulas that make for endurance, psychological balance and continuing growth in one of the most competitive fields in business.
One of the best things that Cawiezell has done over the forty years as a professional in the insurance industry had been to help develop young salespeople become top performers and leaders in their communities. He has given back what he had been given: as a youth he had an excellent work ethic that blossomed under the guidance of adopted mentors. At a very early age, he intuitively knew what it took to be a successful entrepreneur. And he knows that mastery in the business of sales will benefit personal life as well. Issues on business etiquette and how morality makes for a stronger and resilient mindset in the ups and downs of the market are also discussed. The book comes with helpful models and diagrams that outline the major points and flows of Cawiezell’s business acumen. Learning and mastering the 10 areas of The Success Cycle put the author within the top 1% of sales people within two years of mastering it.