This week took us the furthest west that we’ve ever gone! Thank you voters, you’ve answered Amelia’s prayers!
We fly into the Denver airport and I meet Becca, who’s already been in Denver for meetings over the week. It’s a cold and dreary night, almost reminiscent of the wind we just fought through. As Becca and I drove into Denver proper from the airport it was almost looking like sleet – and could have turned into snow. No, please no.
The next morning, we all met and were on our way to Littleton, Colorado. The day brought separating clouds and eventual sunshine, which I’ve been told is the Denver norm. We pulled up to Kathleen’s house and lo and behold, two steps to get inside, with no handrails. I slowly made my way from the street up the path to the godforsaken steps. Now, keep in mind that I’m not just doing this for a joyride. It’s very necessary for me to be involved with the crew to hear the initial interview with Kathleen, so I get a better idea of her and her story. That helps shape the blog that I’m writing to you!
Two steps can sometimes feel like a mile high. A mile high in the Mile High City! Denver, please don’t kill me for that pun. Being in the theater has taught me the importance of accessibility. I’ve almost become obsessed with it. How could you not? Any place that you want to go is a challenge unless you know about whether or not it is accessible before you get there. A few months ago I did this small video with my friend Suri in New York City where we vented our frustrations about accessibility. View on YouTube. Really, I’ve been trying my efforts towards finding a solution, rather than just complain. More to come on that in a little while!
Kathleen is truly an inspiration – showing us that anything is possible when you create your own sense of access! As I continue on the MS journey, I realize the importance of access. It makes what was once said to be impossible – now very possible.
Denver hosts one of the home offices of the National MS Society! After the shoot, we went to dinner with Joyce, the CEO of the Society, and the crew that’s been helping us from place to place and posting our stories on the Web seamlessly. It was a great way to end our Denver experience.
-taken from wekeepmoving.wordpress.com, written by Jason DaSilva
This week, the New York-based WKM moving team boarded a 6:30 AM flight to Milwaukee. To put into perspective, this means that I had to leave for the airport at 4:30 AM. This meant that I had to wake up at 4 AM. Please know that this is the backdrop from which this blog is written, and be reminded that MS is not exactly tolerant when it comes to sleep deprivation. I’m just asking for your empathy, please and thank you.
We got to the Milwaukee airport, met our West Coast colleagues, and took off to meet Amy. Hold a second – let me just give some props to Amelia. So far every place that we have visited has either been on the East Coast or in the Midwest. She’s in San Francisco, which means that she has to travel far every time that the destination is chosen. Please voters: don’t do this to Amelia again. I can tell she’s getting tired from the amount of air miles that she’s accrued. Get out there and tell all your friends to vote for someone on the West Coast at least once. Sorry, I digress. Save Amelia 2010.
Back to the Milwaukee airport. Well, by this time were actually in rented cars speeding towards a shopping mall. A shopping mall? What does this have to do with multiple sclerosis? We’re headed to meet Amy. She founded an animal rescue agency which seems like the funnest job ever. We were surrounded by cats. I could’ve been there all day. I didn’t grow up with a cat or a dog, so this was such leisure! This is what heaven must be like!
WKM Cats
Amy’s story reiterated the importance of family and support which really hit home for me. I’m realizing that living in New York has been a challenge without family around me. My father lives in Hawaii, my mother and my brothers live in Vancouver. Both parents are on the other side of the continent. In New York, your friends become your family. But at the same time in your 20s and 30s, nobody really has time to be your family when they’re racing around New York on the grind. Only in the past six months have I really felt like I have somebody looking out for me in New York. My girlfriend Alice is really the support system that I never had. It can be as simple as somebody to ask you how your day was, somebody to help you with your shoes on in the morning, or somebody to give you a call just to check up on you. These are the things that someone close does. I’m realizing how isolated I had become, and how nice it is to have Alice’s support. To those who don’t have someone: I know that feeling and it can be rough. But I do have this to say: Keep on, living and surviving, you’re providing inspiration to others around you, whether you know it or not! Don’t be afraid to ask for a little bit of help or support. I want to be as independent as possible, but sometimes this is to my own demise.
As the sun set, Amy’s family Bike MS team socialized in her driveway, and the We Keep Moving team left the cats that reminded us what love and support really is.
Eva Dien Brine Markvoort … what a life! She lived passionately, with purpose, and died on Saturday, March 27. She left a legacy of love and made a difference in the lives of thousands of people both in her personal life and in her online community. Eva’s life, almost 26 years long, was defined by her challenges related to cystic fibrosis. She knew how to live for the moment and her magnetic personality drew people in at every turn. Eva took nothing for granted and she had no time for complainers. Her life was full of vibrant moments and she appreciated all the beautiful aspects of her surroundings, constantly adjusting to the limitations presented by her health. Eva filled every room she entered, she engaged herself in the present and she learned to turn the most challenging situations into positive experiences. She was a force! Eva has enriched the lives of her parents, Janet Brine and Bill Markvoort, her siblings Annie and Hunter, her loving extended family of aunts, uncles and cousins, and her dearest core ‘team’. Eva’s family expresses their gratitude for the tremendous support provided by friends, family, neighbours, colleagues, the medical team, and Eva’s online community.
In lieu of flowers, donations in Eva’s memory to the Vancouver Cystic Fibrosis Foundation will be gratefully accepted at www.cfvancouver.ca . All who read this are also encouraged to register as an organ donor at www.transplant.bc.ca . For her online community, Eva’s Celebration of Love will be streamed online on April 30 beginning at 4:00 p.m. Pacific Standard Time.
The weather has broken. We are in spring, soon enough to turn to summer. New York had a day or two in the 80 degree Fahrenheit range – the warmest we’ve seen since last summer. I started getting uncomfortable with the heat, reminded of MS symptoms during the summer heat. Not fun. I don’t know the best way to describe it. It’s like this overall fatigue that doesn’t escape your body. Cooling vests? Anyone use them before? If so, please comment and let me know what you think. I never used one, but they sound really nice right now.
The weather was starting to cool and become bearable on Saturday evening. By Sunday morning, the weather was just perfect. Just in time for our We Keep Moving flight to Orlando, Florida. Florida is good times to me. See, I grew up in Fort Lauderdale, Florida. I can tell you, as a child, South Florida is nothing but fun. Outdoor sports all year round, tropical wildlife/agriculture, and the beaches/blue ocean.
But this trip takes us to Central Florida – Kissimmee, Florida. Some small Jason trivia for you: When I was ten years old, I was the fourth best speller in Florida in my age bracket. The word I got out on: weasel. Can you say “choked”? Bitter. Anyway, the state spelling bee championship took place in Kissimmee. That’s my only relationship to Kissimmee. It sounds like “kiss me.” Cute. It’s also the home of Disney World, Universal Studios, and all the other great amusement parks we know and love. However, the real magical kingdom is not Cinderella’s Castle this time.
It’s the home of Joe and Karen.
I’ve never met somebody who’s had MS for as long as Joe has – over 30 years. I have been living with MS for just over five years. Now, I’m 31 years old and feeling the symptoms of MS in a relatively major way. I slowly started to realize that it’s going to be a long and arduous road through life. Only in the past year did it dawn on me that it doesn’t have to be a lonely road. Only when I started accepting the disease did the world start opening itself back up. Nonetheless, I still had the question of what it means to have that disease in the long term. Its grating to me, so why wouldn’t it be grating to someone else? Seeing how Joe and Karen work together through the experiences of having MS shows me that it’s possible to remain strong as a person and in a loving relationship.
Oh, Sunny Florida – you still have the same magic that I grew up knowing. Thank you all for voting and letting me find it.
Mouse Triplets
-taken from wekeepmoving.wordpress.com, written by Jason DaSilva
Flat stretches of mowed lawns and lego houses as far as the eye can see. I like Ohio. I was born in Dayton, Ohio, in 1978. That year Dayton was statistically the most average place in America and “Jason” was the most commonly used boy’s name. Normal. I lived there until I was four. So, really, I shouldn’t have any romantic notions… but to me, Ohio resonates some sort of magical idealism.
I took a nap on the flight, did some small work on my computer. Ah, what a great flight. I have to give props to Delta for the smooth travel with excellent service. Ah, Delta – you make our travels through America manageable and oh so stress-free (read between the lines).
Landing in Cleveland and getting off the plane was no problem at all. Whisked downstairs on my scooter to pickup the one piece of checked baggage I had: my handy-dandy walker. It allows me to get some walking in – critical to keeping my legs active. But we got to the baggage claim and didn’t see my walker sitting there. We went to baggage special services and he didn’t have it there either. It seems that my Walker went to Indiana. Hold on a second. How does that happen? On a direct flight, how do you lose someone’s trusted mobility device? Just some humble advice to all you in the airport biz: Don’t lose somebody’s walker!
This is the third time that this happened. One previous flight my wheelchair was lost. Hey Delta (slap in the back of the head): figure it out. Really. What are we supposed to do? We need those things to get around.
The next morning, we found our way to the small suburb of South Euclid, Ohio. Meet Dale, an MS researcher who is living with MS himself. He even put a little ramp for me to get up into his house. That certainly made things easier. In the afternoon, we had a quick lunch and continued on to our next destination, a MS research lab Dale works in.
After five years of having multiple sclerosis, I am close to coming to some strange kind of acceptance with what’s happening to me. How do I bring back the hope? After hearing and seeing firsthand the work that Dale is doing, I realize that we are closer than I thought to finding something that’s going to help us regain some function. What is only a pipe dream to me is closer than I thought. This magical idealism which is tucked in my subconscious reintroduces itself to me in Ohio. Thank you, Dale.
Later that evening, my walker arrives. I wonder, do I get extra air miles, now that my walker has traveled to Indiana and back here?
Ohio Walker
-taken from wekeepmoving.wordpress.com, written by Jason DaSilva
A few days ago I was having a terrible time. All during the day, I couldn’t concentrate properly as I had an excruciating headache. In typical New York fashion, I let my work ethic get ahead of my personal health and spent the day at my office. While working there, even with my computer screen zoomed in, I was having vision troubles. Frustrated, I found myself taking ten-minute naps in the late afternoon. By the evening, I was really having major vision troubles and feelings of fatigue. I managed to make it home with the help of Alice, who pushed my scooter through the unaware trendsetters of Soho.
After getting into my apartment, I couldn’t make it to my bed. Lying on the hardwood floor, I didn’t have the strength in my arms to lift myself up. A good friend of mine (next door neighbor) came by and helped me into bed. A thermometer was put under my tongue. I had a 100-degree fever.
I don’t get sick often – but when it happens, it’s like a ton of bricks. A locomotive train speeding towards your body and you only have brief moment to step out of the way. If you don’t, then wham, you’re hit. With MS, when you get a fever, you can’t play around. I’ve gotten sick a few times before, never a pretty thing. One time, I was in the ER, another time, I had to drag myself through my apartment because I was too weak to stand. This time, it was full on. I actually didn’t think I’d be writing this blog right now.
Thank goodness the fever ended in a climatic moment of near triumph. In the middle of the night, my fever broke. A sweat and I nearly passed out from exhaustion. Now, three days later, I am carefully monitoring my body, with the incident still fresh in my mind.
Early Sunday morning, Arney and I took an Amtrak from New York’s Penn Station – straight shot to Philadelphia. A route traveled daily by patient punch-clock commuters for generations, with the commitment to travel the hour-and-a-half early each morning and late each evening. We met Francis, a personal aide assigned to help me on this trip. At first, I was a skeptic, as I take a small sense of pride in struggling to do the things I can do myself. Have you ever had a personal aide? Best thing ever. Makes life easier, I’ll tell you this. My legs are so spastic these days, even walking 20 feet with my walker poses a challenge.
This is West Chester, Pennsylvania. Rolling grassy hills cut with winding roads, darted with long driveways leading to the lives of people fulfilling the dreams of the forefathers of America. Meet Linda Lindsay, who doesn’t hold anything back. Life doesn’t stop moving with MS. It has affected many aspects of her life – which Linda shares with complete frankness. Refreshing. After my feverish mid-week experiences this is exactly the right thing – what I needed – to hear. Someone who doesn’t sugarcoat the experiences of living with multiple sclerosis.
Yeah, we’re surviving and plotting on with a vengeance, but it’s a struggle. Every morning the basic things, as simple as getting dressed, fuel the bitterness we have towards this horrible disease. I have to thank Linda for showing me the importance of allowing our struggle to be known.
As we’ve been traveling around the country, Amelia has been giving these cool necklaces to everyone she meets. These necklaces were made for a benefit she is hosting in LA this July called Rock for MS. Though her event is sure to rock, the shape of guitar pick also is an ode to Amelia’s boss, Jim Marshall, a famous rock photographer who died six days ago at the age of 74. With the suddenness and sadness that came with this occurrence, we were sure that Amelia wouldn’t be able to join us in Pennsylvania, but she persevered, furthering the theme of Moving Forward. This picture is in honor of Jim.
We Keep Moving Rocks!
-taken from wekeepmoving.wordpress.com, written by Jason DaSilva
To leave New York City on a warm spring Sunday is tough. Especially since it’s the first warm weekend of the season. All of a sudden the population of the city seems to have quadrupled. Everyone has unearthed after their winter hibernation and is hitting the streets. Central Park is teeming, now full of people sunbathing on the green grass, playing frisbee, all amongst the barren trees that have not yet clued in that it’s springtime. Scootering in the Village is suddenly a pleasurable experience compared to the shivering winter snow and sleet.
As I write this, I’m sitting out here in the rain. Well, inside a car, staying dry. While the others are outside filming kayaking in less-than-desirable weather, my disability proves to my advantage. I turn up the heat in the car, snug as a bug and sip my warm cup of joe. Meanwhile, Jennifer and Blake are having a great time pushing their paddles through the cold waters of the lake.
Back to the sunny day. I boarded the regional airplane in the same way as last week when I went to the foothills of Tennessee. But this time, we’re talking about hop, skip, and jump – just one hour outside of the city is the small city of Rochester, New York. While coming down the jetway in Rochester, I wailed – my light-weight travel scooter flipped backwards and I fell, hitting my head backwards onto the jetway. The luggage guy almost had a heart attack and could not believe I was not only alive, but cheerful. Awesome. As a former soccer player of 15 years, I like the thrill of a good fall. The boring part is getting back up. I had three people help me get back onto my scooter. Remember, the more dramatic the fall, the more help you get.
We rented two cars and headed to our first meeting with Jennifer. Amelia spent all day taking photos. The rest of us arrived by the afternoon and Jennifer came speedily down her driveway in her wheelchair. What a beautiful house. The lower floor is fully accessible! The front entrance has a ramp installed to make it easy to get inside and the upstairs has a moving seat put in on the staircase allowing Jennifer to go up and down easily. What a wonderful luxury!
As a young person with multiple sclerosis, it is amazing for me to see somebody who’s well-established in their life with a family. Not only did I get to observe what it is like to have multiple sclerosis when you’re older, but also the reaction to it from children. Jennifer’s boyfriend never even entertained the thought of breaking it off when she started her MS journey. As someone who’s single, I got a lot from this. I have a girlfriend now, Alice, who’s healthy (though ironically, her mother has MS) and her interest in me overlooks my disability. She rolls with it.
I realize that every person that I meet is going to share their perspective and allow me to understand what it is like to live with MS. I am learning so much, just after just two weeks on the road. The 10 weeks will go by quickly. Then again, 10 weeks is 10 weeks! This is a great opportunity to be inspired.
After the evening shoot, the WKM crew here in Rochester went out for dinner at a really interesting restaurant. All the waitresses were wearing a fedora hats. We asked if we could borrow them.
Crew In Fedoras
-copied from wekeepmoving.wordpress.com, writen by Jason DaSilva
