Ahhh, pet peeves. Who among us doesn’t have a few? (And, given sufficient neuroses, some of us may have more than others!)
This particular one is really a mini-Peeve of sorts. Language being one of the things that has long been of great interest to me, I have found myself wondering why the headgear one attaches to a stereo is called “headphones” while a similar item one attaches to a telephone is called a “headset.” Shouldn’t it be the other way ’round? Read more »
Booker T. Washington once said, “Few things help individuals more than to place responsibility upon them, and to let them know that you trust them.” I hadn’t read that until very recently, but it’s actually how I managed people ranging from my employees to my own children.
It’s long been a credo of mine that people will always live up — or DOWN — to your expectations of them. That is, if you expect or assume laziness, or deceit, or incapability, or any other lesser qualities, then nine times out of ten that is exactly what you will get. On the other hand, if you expect or assume anything from “simple” trustworthiness and hard work to integrity and competence, that’s what you will get, too.
And sometimes, given that sort of environment, actual greatness can appear.
Todd Small was stuck in quicksand again. It happened, as always, on the floor of the Seattle machine shop where he worked. His shift complete, Small was making the 150-yard walk from his workstation to his car, when he realized that his left leg was sinking deep in the stuff. Though this had happened before — it happened nearly every day now — he stopped and glanced down at his feet. His Nikes looked normal, still firmly planted on the shop’s concrete floor. But he was stuck, just the same. His brain was sending an electrical pulse saying “walk,” but as the signal streaked from his cerebellum and down his spinal cord, it snagged on scar tissue where the myelin layer insulating his nerve fibers had broken down. The message wasn’t getting to his hip flexors or his hamstrings or his left foot. That connection had been severed by his multiple sclerosis. And once again, Small was left with the feeling that, as he described it, “I’m up to my waist in quicksand.” For the 400,000 Americans with multiple sclerosis, Todd Small’s description will most likely ring true.
The rest of that New York Times article is worth reading, but the most salient feature is its pointer to a remarkable new resource: PatientsLikeMe.com, a Web site whose stated goal is “to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases” — specifically, for people who have MS, Parkinson’s Disease, AIDS, ALS, or certain mental-health disorders.
The founders say they have created a community of patients, doctors, and organizations that “inspires, informs, and empowers individuals,” and that they are “committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.”
It’s worth a visit.
The March 23 Boston Globe Magazine had an excellent piece, “My Daily Battle,” by Dr. Thomas Graboys, a physician who suffers from Parkinson’s disease (and — as if that weren’t enough — from an Alzheimer’s-like dementia as well). With my MS causing many of the same symptoms and challenges, I understand with painful clarity his heart-wrenching description of how it feels to be trapped in your own body and betrayed by your own mind.
For the gazillionth time, your friend or family member who has multiple sclerosis has just cancelled another outing with you. You’re trying very hard to be patient, but how in the world can you understand all these last-minute cancellations?
Here’s how: Try “having MS“—24 hours a day, every day—for the next few days. Read more »
I recently had a long conversation with a friend about my MS, and he gave me a new notion that I like very much. I had told my friend that while I was looking up some old files, I ran across the initial report I had written for a venture capitalist who was considering a startup company for seed investment. As I read the report, I was repeatedly struck by the fact that it had been written by A Very Smart Person—one to whom I could NOT relate, not in the slightest. Even though that person had been me. Read more »
Do read a good post from columnist Paul McNamara over at NetworkWorld about the life-changing properties of FiOS—life-changing, that is, unless you don’t think a fire which puts at risk your entire family and everything you own will change your life.
“But you look so good!” That’s often the first thing people who have multiple sclerosis hear from their friends when they choose to tell them of this diagnosis. The enormous dissonance between what a person with MS hears about how she appears to others and how she really feels is one of the few constants in a disease whose chief common characteristic is its very unpredictability.
I have multiple sclerosis (”MS”). Because I don’t let the disease define me, having MS is in no way central to this blog. However, since it’s bound to come up from time to time, here’s some background about MS and the ways in which it is affecting me.
MS is a progressively debilitating disease that affects the central nervous system: the brain, spinal cord, and optic nerves. Physicians and researchers think it is an autoimmune disease, because the patient’s immune system attacks part of her own body as if it’s a foreign substance. In MS, the body wrongly directs antibodies and white blood cells against proteins in the myelin sheath that surrounds nerves in the brain and spinal cord. This causes inflammation and injury to the sheath and ultimately to the nerves that it surrounds, which results in multiple areas of sclerosis (scarring). When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is slowed or blocked, and this produces the various symptoms of MS.
Those symptoms are unpredictable and vary from person to person — and from time to time in the same person. They may include heat and temperature sensitivity; bladder and/or bowel dysfunction; dizziness, vertigo, and weakness; balance or coordination problems and difficulty walking; abnormal sensations such as numbness or “pins and needles”; spasticity and/or tremors; pain; depression; changes in cognitive function (including problems with memory, attention, and problem-solving); speech and swallowing disorders; vision problems (which may include blurring or double vision or partial or complete loss of vision); hearing loss; sexual dysfunction; paralysis; and even seizures.
At one time or another, I’ve had most of these symptoms; currently, I suffer from the first ten groups in that list. There is also one symptom that afflicts almost all individuals with MS, and it is the symptom that I generally find the most frustrating: fatigue. The fatigue of MS is hard to explain to others. It’s nothing like being “tired”; rather, it is an overwhelming, bone-deep physical lassitude that makes the slightest effort a challenge which no strength of will can overcome. It affects everything in my daily life, and has even changed my perception of who I am.
Because many of the symptoms of MS are invisible to others, some people assume that I don’t really have a disease. Family members, friends, employers, and even doctors can — and often do — doubt the validity of invisible symptoms. This seriously undermines my confidence and relationships, and it can also discourage me from seeking help for problems. People with invisible symptoms must constantly adjust to the differences between how they feel “inside” and how the world reacts to us when we “look so good.”
And there are other difficulties, every day. Getting around is a problem for me, especially during the periods when I must use my wheelchair. Since I no longer drive, even completing the basic tasks of “normal” living is a challenge (just as is finding the stamina and coordination to do them). I can no longer use public transportation, so I must depend on cabs to get me around; that’s expensive on a restricted budget, and it’s often inconvenient.
Many stores and buildings that claim “handicapped access” actually are not disabled-friendly at all: They may have automatic doors, but their aisles are too narrow for me to negotiate, or there are obstacles at every turn, or objects are placed out of my reach or are too heavy for me to lift. In crowds, I can’t walk about safely on my forearm crutches, as children — and even some adults! — have occasionally kicked a crutch out from under me.
I miss the work I used to do and the contributions I used to make to my communities, and that has diminished my sense of self-worth. I often have to cancel my participation in long-planned events and outings, and that increases the isolation that comes with chronic illness. Because I can’t function independently outside my home (and am slowly losing my ability to remain independent even there), I often feel like a burden rather than like a friend or a useful citizen.
Because of all that, I also live with feelings that other people can’t see: feelings of anger, uncertainty, anxiety, frustration, and fear. And all of it — symptoms (visible or not), feelings, and disabilities — adds up to a burden that most people with MS have in common.
There is still no cure for MS. There are various drugs and strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments can, to some extent, improve the quality of life for people who have the disease. But they won’t cure or reverse it — and even some of the statistics on how much various medications actually do to modify the disease course are not perfectly clear, or constant.
If someone you know has MS, please don’t be afraid to offer help. Most of us are forced to learn to accept assistance when it’s needed — and we’ll also be very direct with you during the times that it’s not. I’m still learning how to ask graciously for assistance (and how to accept it graciously as well); I do not take offense when someone holds a door, or picks up something I’ve dropped.
But if I tell you that I’m tired, please don’t respond with “I had a big night last night, too.” And when you see me walking like a drunk — even with my assistive devices — just offer a smile and a steadying hand: It’s not alcohol or a character flaw, it’s MS!
To: Wyeth Consumer Healthcare, Inc. (Robert Essner, Chairman; Bernard Poussot, CEO)
Subject: Wyeth Advil® PM Newspaper Advertising Supplement March 2, 2008
WHAT are you THINKING?!!
In this age, when children and young people across the U.S. are suffering and dying from OTC and prescription drug abuse in numbers never previously seen, WHY did you place a packet containing two “FREE SAMPLE” Advil® PM caplets in a clear plastic pouch on my copy of the Boston Sunday Globe—one of 2.5 million samples you sent across the U.S.A.? Read more »
I have too many user IDs and passwords to remember—and I’m required to use too many different IDs and passwords over the course of just a single day. I desperately want a simplified way of gaining access to password-protected online and real-world venues. And I would like that method to be more secure than the present means of typing in my ID and password online, or using a variety of PINs at various cash registers.
Would someone please develop—and make ubiquitous (otherwise, what’s the point?)—a simplified, universal, and secure access key? Read more »