http://www.youtube.com/watch?v=DkGn9lNH1GQ
Fishbone “Alcoholic”
Silly and fun.
Mighty Might Bosstones – “Our Only Weapon”
Takes me back to being 14.
|
||
|
Check out Alice’s post on her blog…I’ll tell you, it’s been a long hard road to get to here! http://alovesj.wordpress.com/2010/06/29/amazing-article-the-battle-for-treatment-will-be-won/
We got engaged! Alice and I went on vacation after a crazy whirlwind experience, which started way back in October – so crazy that we really needed a vacation. So while we were on our trip, I gave her a ring. I had it planned for about a month and got the ring shipped over. We are both really excited. What a winding road it has been to finally meet the person that we plan on spending our entire lives together with. This road has been so winding that at times I really thought that I was completely lost and then I when I least expected it, I found a treasure. Over at the next few blog posts, I’ll give you the chronology of how I’ve gotten to this point. Alice has been the major support system for me to be able to get here. All her work over the past six months has lead to here. It’s true when they say ‘You never know what’s coming for you!’ Here’s a treat…check out Alice’s ongoing Florida wedding blog: http://alovesj.wordpress.com/ 10 Weeks Across the Country Telling Your Stories Pennsylvania is a beautiful, lush state with rolling hills and large forests far from the concrete escapades of New York City. This week, we met Ashley, a sophomore in college, who was diagnosed at the age of 15. High school is hard enough as it is – without a diagnosis of MS. She’s a very brave young woman, who has definitely turned lemons into lemonade.
We Keep Moving is coming to a close; this will be the final blog. And what an adventure it has been! We traveled across the country over and again, to places that we wouldn’t otherwise have found ourselves. It was not without its difficulties: the airport at 4:30 a.m. was exhausting, a different hotel room every night was confusing. Imagine waking up each Monday morning not exactly sure where you are. Imagine leaving your apartment building and traveling a vast network of airports. Intense to the point where one could lose their identity! It is a strange psychology, knowing that for every week from Sunday to Tuesday, you’ll be in someplace totally different. This tour was unique because we didn’t choose our destinations. You chose where we went week by week. We were your messengers! The stories that you chose were the ones that we told! There have been several difficult times for me in particular, traveling with a scooter. I’ve seen how our society functions (or doesn’t function) when it comes to accessibility. I’ve seen how people look out for one another – we have a universal trust to overcome individual physical disability. I’ve also seen how using a scooter is possible when you have people to help. I no longer fear flying with an assistive device and I hope that by watching our stories and my traveling that those of you who use such devices don’t find them a deterrent to travel. Keep moving! Some highlights: in Church Hill, Tennessee, (week one winner) Jason’s spirit surpassed MS and his family was of the utmost importance. In week three, we met Linda, in Westchester, Pennsylvania, who honestly shared the difficulties of MS alongside the triumphs. Not to forget Joe and Karen from Winter Park, Florida, whose love for each other holds no bounds even in the face of MS. What about Kathleen from Littleton, Colorado, whose strides are only surpassed by her spirit to keep moving. One major thread that we saw a throughout the stories is strong support systems for those of us living with multiple sclerosis. As with Amy from Muskego, Wisconsin, or Jennifer from Rochester, New York, family support is important for the day-to-day trials of MS. Of course, the definition of family is broad – even with Buddy and her dog Ellie, a support system is a theme we’ve taken from each and every story. As Dale from South Euclid, Ohio, showed us, we’re really close to finding a way out of our MS challenges. As an MS researcher, he’s helping pave the way so that this conversation may one day be over. Until that day happens, we have the National MS Society, who’s helping us in multiple ways and, in this case, allowing us to hear stories of others like us. Thank you to all of you who voted throughout our journey, and a special thank you to all of those who allowed us to invade your lives and tell your stories. You’ve provided inspiration and advice for us all to draw upon as We Keep Moving on our journey together. As you know, I’ve been to a lot of airports in North America, especially lately. This continuous air travel is helping me to realize something: I tend to learn things in the extreme situations, like getting hit by a car to find out you need to look both ways before crossing the street. Ten weeks of airport traveling as a disabled person has taught me a great lesson. And unfortunately, I just missed the flight I was supposed to be on. Let me tell you how it all happened. My alarm buzzes repeatedly at 5:30 AM. I hit snooze a couple of times and then roll over begrudgingly to wake up. It is a clear morning in Santa Fe, New Mexico. My flight is departing early morning. Sherri drives me to the airport at 6:30 AM. It’s going to be a beautiful Santa Fe day, we agree – too bad we can’t stick around and enjoy it! We arrive to the airport in more than enough time, but the airplane to Dallas is arriving late. Because of this, Kate, Brett and I will have only 55 minutes to catch our next flight in Dallas. The plane lands. “Please let all passengers with a connection leave the airplane first.” Brett, Kate and all connecting passengers rush out. Of course, I should rush, but I sit tight. I can’t get up and walk very far, so I wait. The flight attendant tells me she called ahead to let them know I had a connection. Well, that’s good. But she also informs me that that doesn’t make a difference – sometimes. All the passengers get off the plane and I sit there waiting to be taken off – for approximately 15 minutes. The wheelchair crew comes in to get me with their handy-dandy aisle chair. After the massive delay, it adds insult to injury to have to get into one of these to be escorted off the plane. I get outside and as it happens my scooter is still down in the plane. I tell them that I have a flight to catch. “This is the first we’ve heard of that,” one of them says. Wonderful. Even though the flight attendant called ahead to say: we have a need for a wheelchair for a disabled passenger and he has a short connection time. I get into a wheelchair and go out to the front of the gate. Ten minutes later they bring my scooter and I’m on my way. Unfortunately, my connection is in C-37 and I’ve arrived to the B terminal. I feel sorry for the wheelchair attendant who pushes my walker as I speed toward the shuttle to the C gates. We bolt down and arrive to C-37 and guess what? The plane left just minutes before. The gate attendant tells me to go to Gate C-30 to wait and catch the next flight to LaGuardia Airport. Awesome. So I sit writing this blog at noisy, crowded Gate C-30. As I’m writing, I’m listening to the music of a new friend I’ve made, Preston Craig. He’s an Atlanta-native who descended upon New York late last year. He’s got muscular dystrophy, and is an amazing DJ. Check out his work on his blog. Now, I understand the variables of air travel and that airports are trying to wrestle with human error and the inconsistencies in finding order. I also know that if I was taken care of in a manner that would allow me the same chance as someone able-bodied, I would have made that flight. On my way to the C terminal, I called Kate. They boarded in time and were on the plane headed to New York. Really, this is not about missing a flight. I see this over and over in different places and different circumstances. Is it the basic concept of survival of the fittest or the human instinct of every man for himself? I want to believe that, as a society, we’ve come a farther in our philosophies towards life than this. Here’s the lesson: every time that I see there is no ramp or elevator in a building, every time that there’s no accessible accommodation in a hotel, and every time I can’t get onto the curb, I’m reminded that we have a long way to go. More so than this, I am reminded of the extra steps that people with accessibility issues have to take to be accounted for and heard, and to do something as simple as take a trip. More so than this, I am reminded of how much human potential has not in actualized because of these basic things that society doesn’t hold as a priority. Sorry to get deep on you. It might be now that I see cities from high up, I get to see the houses, the cars on the streets, and I have a broader perspective. Though I vent, I’m certainly having a good time, with Preston Craig in my ears, remembering the amazing day we had with Buddy in Santa Fe. She taught me something about making my voice heard. It’s with her spirit in mind that I wrote this blog.
|
   |
|
|
Copyright © 2010 When I Walk - All Rights Reserved |
||
