Tweet
I’ve made the decision to officially come out with my MS to readers of Nissan Sport, the car magazine I edit and co-own. The issue will be a landmark one for the magazine as we celebrate Nissan’s 50th anniversary in the United States. It will easily be our most read and most discussed issue in our two-year history, reaching over 25,000 people worldwide. I’ve written a draft of the column and would appreciate your input. I only have one chance to get this right. Thanks in advance for the help.
Enjoying a dream job with a car magazine … and fighting a nightmare of a disease robbing my ability to drive
Trying to fall asleep at night, I’ve written this column dozens, probably hundreds of times in my head over the past couple years. How do I tell readers, some of whom I’ve known since the earliest days as editor-in-chief of Sport Z Magazine, that I need their help in fighting an incurable disease. Three years ago at age 37 I was diagnosed with multiple sclerosis, a neurological disease where the insulation protecting the nerve fibers is slowly being destroyed. (Think electrical wiring in a car that is being stripped bare or, worse, totally cut.) The result, you can imagine, can be devastating. Almost half a million suffer from MS in the United States alone—2.5 million worldwide—and every hour someone new is diagnosed in this country.
To slow the disease down, I take a daily shot that is about 30 percent effective, rotating between my legs, hips, arms, and stomach. There are no miracle cures. Fortunately for me, at the time of this writing, my symptoms aren’t too bad. I’m pretty numb from the chest down, I go blind when I get hot, and weakness in my legs prevents me from walking long distances without the help of a cane or trekking poles. For now I can still drive, but with fuzzy feet, potentially sketchy eyesight (forget about wearing a helmet because of the resulting heat), and a creeping numbness that has moved into my hands, my future behind the wheel is in question. But the potential need for taxi rides is not why I’m asking for your assistance.
In addition to being the managing editor and co-owner of Nissan Sport, I also run ActiveMSers.org, a nonprofit website I set up to help people stay active with MS physically, intellectually, and socially. Using my experiences from the magazine, I objectively test and rate gear that can help someone deal better with the incurable disease. I started a forum on the website (generously built and maintained by Jeremy Blackwell of nissangtrclub.com) to help fellow MSers connect. I’ve also included exercise advice, travel tips, and more. Since its launch, ActiveMSers has received lots of coverage in print and on radio—in fact it was even featured in a half-page ad for Infiniti in The Wall Street Journal (which you can see online at the website). But I need word of ActiveMSers.org to spread farther, and with the help of a Nissan Sport army of over 20,000 readers, I’m optimistic my can-do message can reach across the United States, Canada, and even the world.
Visit ActiveMSers.org when you get a chance. Heck, post in the forum and say hi. Tell those you know who have MS about the site. Enlighten your friends, your colleagues at work, your forum buddies. While ActiveMSers is not set up to handle tax-deductible donations at this time (hey, I have a magazine to run, the 401c3 will have to come later when I have more time and volunteers), consider donating to MS charities such as the Jimmy Heuga Center (heuga.org) or participating in your local annual MS walk or MS bike ride put on by the National Multiple Sclerosis Society (nmss.org). Tell them ActiveMSers sent you.
I’d also like to encourage, even challenge, Nissan to introduce the first factory-built handicapped-accessible van for distribution in the US. If I end up in a chair, I really, really don’t want to be seen in a modified Chevy Astro van or, gulp, a Honda Element. I want only a Nissan. The Nissan Caravan Personal Chair Cab (shown) and Clipper already exist. Customized by Autech, the Caravan “lifecare vehicle” has been in circulation in Japan since 2001. It and/or the Clipper can be built here as part of the light commercial vehicle expansion of 2010 and the result would be a boon to the 1.6 million people in wheelchairs who suffer everything from MS to stokes, from spinal injuries to war wounds.
Oh, and there are two more things I request. One, don’t feel sorry for me. Heck, I’m the one working at a cool car magazine, not you. And two, don’t even think about parking in a handicapped space “just to run in for a sec.” It really pisses off the folks who desperately need the spot. Trust me, you’d much prefer to walk a little farther than to walk (or roll) in the shoes of someone with a blue placard hanging from the rearview mirror.
Enjoying a dream job with a car magazine … and fighting a nightmare of a disease robbing my ability to drive
Trying to fall asleep at night, I’ve written this column dozens, probably hundreds of times in my head over the past couple years. How do I tell readers, some of whom I’ve known since the earliest days as editor-in-chief of Sport Z Magazine, that I need their help in fighting an incurable disease. Three years ago at age 37 I was diagnosed with multiple sclerosis, a neurological disease where the insulation protecting the nerve fibers is slowly being destroyed. (Think electrical wiring in a car that is being stripped bare or, worse, totally cut.) The result, you can imagine, can be devastating. Almost half a million suffer from MS in the United States alone—2.5 million worldwide—and every hour someone new is diagnosed in this country.
To slow the disease down, I take a daily shot that is about 30 percent effective, rotating between my legs, hips, arms, and stomach. There are no miracle cures. Fortunately for me, at the time of this writing, my symptoms aren’t too bad. I’m pretty numb from the chest down, I go blind when I get hot, and weakness in my legs prevents me from walking long distances without the help of a cane or trekking poles. For now I can still drive, but with fuzzy feet, potentially sketchy eyesight (forget about wearing a helmet because of the resulting heat), and a creeping numbness that has moved into my hands, my future behind the wheel is in question. But the potential need for taxi rides is not why I’m asking for your assistance.
In addition to being the managing editor and co-owner of Nissan Sport, I also run ActiveMSers.org, a nonprofit website I set up to help people stay active with MS physically, intellectually, and socially. Using my experiences from the magazine, I objectively test and rate gear that can help someone deal better with the incurable disease. I started a forum on the website (generously built and maintained by Jeremy Blackwell of nissangtrclub.com) to help fellow MSers connect. I’ve also included exercise advice, travel tips, and more. Since its launch, ActiveMSers has received lots of coverage in print and on radio—in fact it was even featured in a half-page ad for Infiniti in The Wall Street Journal (which you can see online at the website). But I need word of ActiveMSers.org to spread farther, and with the help of a Nissan Sport army of over 20,000 readers, I’m optimistic my can-do message can reach across the United States, Canada, and even the world.
Visit ActiveMSers.org when you get a chance. Heck, post in the forum and say hi. Tell those you know who have MS about the site. Enlighten your friends, your colleagues at work, your forum buddies. While ActiveMSers is not set up to handle tax-deductible donations at this time (hey, I have a magazine to run, the 401c3 will have to come later when I have more time and volunteers), consider donating to MS charities such as the Jimmy Heuga Center (heuga.org) or participating in your local annual MS walk or MS bike ride put on by the National Multiple Sclerosis Society (nmss.org). Tell them ActiveMSers sent you.
I’d also like to encourage, even challenge, Nissan to introduce the first factory-built handicapped-accessible van for distribution in the US. If I end up in a chair, I really, really don’t want to be seen in a modified Chevy Astro van or, gulp, a Honda Element. I want only a Nissan. The Nissan Caravan Personal Chair Cab (shown) and Clipper already exist. Customized by Autech, the Caravan “lifecare vehicle” has been in circulation in Japan since 2001. It and/or the Clipper can be built here as part of the light commercial vehicle expansion of 2010 and the result would be a boon to the 1.6 million people in wheelchairs who suffer everything from MS to stokes, from spinal injuries to war wounds.
Oh, and there are two more things I request. One, don’t feel sorry for me. Heck, I’m the one working at a cool car magazine, not you. And two, don’t even think about parking in a handicapped space “just to run in for a sec.” It really pisses off the folks who desperately need the spot. Trust me, you’d much prefer to walk a little farther than to walk (or roll) in the shoes of someone with a blue placard hanging from the rearview mirror.
Comment