"Before I die I want to", ADA, Ah-ha moment, Bike MS, dreams, Ellen Degeneres, FARA, Ford Flex, Ford Freestyle, Friedrich's Ataxia, goals, Life List, Nate Berkus, New York City Marathon, Oprah, PSA, Public Service Announcement, service dog, Team LFF, The Leary Firefighters Foundation, Train, training, transporting recumbent trikes, trike carrier
I’ve been thinking on the “Before I Die I Want To_____.” goals that I wrote about in my last post. I know that I need to start by breaking down the enormity of those projects into smaller, more manageable pieces, otherwise those dreams are just going to sit there. They’ll look lovely dressed in the glow and sparkle of my good intentions, don’t get me wrong, but for all their beauty and shine on the surface, what’s underneath – the Things To Do in order to make headway in the realization of those dreams – remains a complex, gnarly and ginormous mass.
Breaking big things into smaller pieces is even more important when you live with illness and/or disability. If you don’t really know me, you might think I’m doing “fine” with the whole MS thing in terms of how it impacts my day-to-day living. And I think even a lot of those who do know me well have an idea of how I live my life on a daily basis that is, well, rosier than the reality. The truth is there are days I don’t even leave my house, especially if my MS symptoms are flaring, or if something else has joined in with the MS Monster to make life more difficult that day. Heat, for example, exacerbates my fatigue exponentially; summer is the worst season for me, and summer in South Texas lasts about half the year, unfortunately. Because of MS I have a lesser immune system than most folks, which means stomach bugs, the flu, colds, hit me harder than the average bear. I sustained an injury recently and because I’d been on a (60 days) course of post-op steroids following my eye surgeries, my immune system was even lower than usual, allowing an infection to set in and progress at a supernaturally rapid pace.
Most days I manage either a training ride on my recumbent trike and/or a mile swim and workout in the pool. The rest of the awake-hours in those days is taken up with recovering from that physical exertion and doing the most basic of daily To Dos, like taking the dogs out, feeding and grooming the cats (we have a small cat rescue based out of our home), writing, housecleaning. It’s a really good day when I’m able to get out of the house for errands like grocery shopping, the drug store, taking the car in for a new inspection sticker or shopping for a new suitcase, etc. But most days are made up of an early morning swim, either Pilates or cycling, and then recovering, and forcing myself through the other must-dos of this house and these animals.
*I’m not complaining; please, don’t misunderstand; I’m explaining.
This is important because it’s about not just my life, but about the lives of millions of people whose lives are handicapped by illness and disability. When the basics of each day are overwhelming and even some of your “must do”s get left undone in spite of their importance, the idea of being able to manifest your dreams can sound like actual, foolhardy, fantasy. There was a time I believed that just getting through each day was all the dream-come-true I’d ever be able to experience. When your energy is severely limited, you have to make hard choices about what, exactly, you’re going to spend your precious reserves on. You become accomplished at making priorities, but that proficiency doesn’t make it easier to accept the effects of what’s been left undone on any given day/week/month. The undone adds up. The undone piles until it looks, well, like a mountain.
There was a time visitors to my home joked about being able to eat off my floors; since MS, we don’t even invite anybody over if we can help it. Not because we don’t like people or enjoy entertaining – because we do, and I desperately miss the kind of life and home where that was feasible – but because when your energy is rationed and you spend the majority on what you’ve determined truly matters to you, things like an impeccably ordered and clean house fall near the bottom of the list. After a week or even a month of that, the mountain-effect has happened and my house looks like something that would cause Oprah – who believes the state of one’s home is an accurate reflection of who they are – apoplexy. I adore Oprah (she facilitated a dream come true for me and an Ah-ha moment to boot) but she doesn’t seem to understand that for many of us living day-to-day lives that have been intersected with illness and disability, a clean, sorted, beautiful home is as big of a dream for us as climbing mountains and swimming channels are for the able-bodied. Oprah also doesn’t seem to get that other people’s dreams of Everest-like proportion are in addition to the musts of daily life. For the ill and disabled, that Oprah-approved kind of home is often completely impossible even when it’s the only goal we’ve dedicate ourselves toward each and every day. And then, in addition to the failed goal of a clean and lovely home, we’ve prioritized away any time or energy for the people and activities we love. You know, real life.
I could have a more organized, a nicely decorated, pristine home – but then I’d have to give up swimming, Pilates and cycling. All of which is more than just exercise for me. It’s even more than psychological and spiritual health. I participate in events to raise awareness and funds for issues that matter to me like MS, Friedreich’s Ataxia, and The Leary Firefighters Foundation. On the days I think I’m in too much pain and experiencing too much fatigue to get off the couch and out of my house, I remind myself of the reasons I ride in events like Bike MS, Team FARA and as part Team LFF in the New York City Marathon. Doing for others motivates me, because I’m training to ride not just for my sanity or health, but to make a real difference. Giving up those events – and all the preparation required for them – is not a trade I’m willing to make. My point here is that I go day by day using every bit of time and energy to get through each day, and when you live that way – due to forces outside of your control – it is challenging to entertain ideas of big goals and dreams. Challenging, but not impossible. So the challenge has to be worth it (and obviously I consider what’s on my Life List worthy or I wouldn’t have put it there) and has to be given as much planning as possible, so that the little time and energy I have leftover from the musts of daily living can be used as efficiently and as optimally as possible.
Unless that poet of home decor Nate Berkus swoops in like a superhero and magics me a gorgeous, bright, colorful home – and unless Ellen Degeneres pulls out her fairy godmother wand and waves me a tribe of mice and birds devoted to cleaning, laundry, changing cat litter, walking dogs and fixing broken things around this house – I have to keep rationing my time and energy, hoping that each day I can have enough leftover from the basics and keeping healthy with exercise and training for fund-&-awareness raising events to dedicate to a little dream-building and dream manifesting. When you’ve got small blocks of time and lesser amounts of energy, breaking the goals into tiny pieces is imperative, because tiny pieces are all you’re up to tackling.
Think of the particular dream you hope to manifest as a mountain you want to climb. There’s everything from the physical conditioning of your body to the gear you’re going to need, to travel logistics and the money to fund everything that all needs to be sorted, researched, planned. Not all mountains are Everest, of course, but a lot of peaks sure seem as high and intimidating when you’re standing at the bottom, looking up. Right now, the goals and dreams on my Life List are doing uncanny imitations of Everest and Kilimanjaro combined. Envision Everest and Kilimanjaro put together vertically, then positioned on the other side of the Grand Canyon. With every existing desert on the planet stretched end to end between this side of the Grand Canyon and me. It’s also quite probable that every ocean and sea has pooled between the other side of the Grand Canyon and those mega-mountains Jenga’d atop one another. Or so it feels, anyway. The vision, she plays tricks when we’re about the business of dream-building and dream-realizing.
I’ve also been brainstorming about ordering. As in, which parts should be tackled first, second, and so on. If these projects were new recipes I was going to make for the first time, I’d make sure I knew what all of the ingredients were, as well as what kind of implements – pots, graters, etc. – were called for. My dreams and goals don’t have the benefit of recipes already written down and waiting consultation, so my initial task is to actually craft the recipes. Keeping in mind that all first-time recipe creation will require tinkering, both in the initial forming and in the first few executions.
I determined that the first step in my goal to create a Public Service Announcement about service dogs and the ADA is to figure out exactly how the heck PSAs get made. I need to know how much it costs, on average, to produce one. I should also make a list of anybody, from individuals to organizations, who may also have an interest in this kind of PSA getting made; in other words, figure out who else will benefit from the PSA.
This photo was taken on Hollywood Broadwalk in Florida, where a police officer actually issuedd me a ticket for walking with my mobility assistance dog. Writing up my personal experiences of being denied access & accommodation can only help my “crusade,” and soliciting stories from others will help illustrate the need for the PSA from a variety of voices. As we all know, there is strength in numbers. Not only do I need to be a good teller of my own stories for this project, I have to be a good curator of others’ stories, and I have to devote the time and energy necessary to helping other people’s stories be told as well as possible. Having editorial experience will come in handy, so thank you Gulf Stream Literary Magazine for that!
In terms of my recumbent trike awareness-raising and education campaign, I need to begin with a list of any organizations, communities, etc. where my “evangelical tricycle tour” would be welcomed and have the potential to truly make a difference for people living with illness and/or disability. I need to conduct research for what kind of vehicle would accommodate the greatest number of trikes/trike carriers, as well as my service dog Luke. I drive a Volkeswagon Beetle with a soft top, which means Luke rides in the backseat and my trike goes on the carrier attached to the hitch, and any luggage, etc. goes in the passenger seat. Clearly, if I’m going to have more than one trike to bring to places for others to try out, I’m going to need another/a different vehicle. The fact that many trikes have a folding feature helps, but those trikes always cost more. So investigating the price of trikes, their versatility/adjustability and how easily they’re transported is crucial as well.
I used to have the perfect vehicle for trike-toting – a Ford Freestyle – but the company doesn’t seem to be manufacturing that model anymore.
My cursory exploration on the website leads me to believe that the Flex is the new and improved version of the old Freestyle.
The Freestyle was actually the vehicle that we bought for use at my mother’s house, back when my husband and I still lived in Florida and I would fly back and forth to help take care of and visit my mom here in Houston. My mom’s wonderful caregivers had their own cars but whenever my mom and I went somewhere we needed room for both of us, plus my service dog Luke and either my mom’s walker or her wheelchair. Very often Gwen or Audrey (my mom’s uber-awesome caregivers), another friend or family member would be along as well. Hence, the Ford Freestyle. Since it was a cross-over and not a traditional SUV it had a lower entry point, which was crucial for my elderly mother, was really nice for Luke’s entering and exiting, and also made things easier for me – not just with getting in and out, but also in regard to any cargo (like mom’s walker and wheelchair, groceries, etc.) being hauled in the back of the vehicle. That lower height meant I didn’t have to lift things UP and into the back, just in, which is more of a help than you can imagine.
That Ford Freestyle was known among my family and friends by its more affectionate name: the Lukemobile. It had a combo of features that also made it the absolutely perfect transport if you happen to be partnered with a service dog. Especially an 80 pound one! Unlike many wagon-y and mini-van vehicles which have one or two rows of bench seats in the back, the Freestyle’s first row of seating was two bucket seats, which left the exact-right amount of space in between for a golden retriever to lie down comfortably.
And, as if that weren’t wonderful enough, there were A/C vents placed right at dog-head level on the back of the driver’s armrest, so that Luke had his very own supply of lovely cool air and separate temperature controls. The Lukemobile, or as close to it as I can find, would be a great conveyer of Luke, trikes and me. Trikes riding in the rear interior as well as outside the vehicle on a roof-rack, and with a trailor-hitch carrier. Look how much room is inside these puppies?
And not to get carried away, but if we happened to get one with a sunroof, Luke would be in heaven with all of that fresh air when the weather is nice. And a navigation system? Yeah, okay, now I am getting carried away. That would be both handy and a great safety feature. I’ve gotten a mite lost on the road before. Being lost isn’t fun for anybody, but being lost when you have health and mobility issues makes you feel even more vulnerable (because you actually are). Anyway, this is progress, detailing what I need and why, knowing which options are available. Now I need to check out what’s on the market that compares to the Ford Flex, although I have a feeling that’s going to be my best bet. Because how can you go wrong with a car that’s already been given the Luke seal of approval?
I have to figure out that little detail of writing a grant for my non-profit to afford the right transport vehicle and the trikes I’ll need. Grant writing. :::shiverSHUDDERshiver::: One brand of writing I have absolutely no experience with whatsoever. But I can learn. I will learn. How hard can it be? If it is, I’ll put finding volunteer tutors for grant-writing on my To Do list. Which reminds me. Lovely readers, will you please be my wingmen and wingwomen? Let me know if you have bright ideas to help move my dreams along. Tell me if you have any information/resources/contacts that will help in breaking down these dreams/goals/mountains into smaller pieces and/or to help the pieces be conquered in their To-Do-ness. You know that TRAIN song Calling All Angels ? Well, I’m calling all of you. Please, be my angels! Manifesting dreams is hard, big, dicey, tiring work. I’d love a sign from out there that I have support and encouragement. I don’t need it, but it sure would be nice 🙂
I’m committed to these goals/dreams either way. And, in the words of TRAIN, I won’t give up (on my dreams), if you don’t give up (on yours). Which also reminds me, I’d love to hear what you’re wishing and dreaming for. What do all of you want to do before you die? Please, share. I really want to hear. And who knows? Maybe there’s something I can do to help you manifest your dreams; at the very least, I can and will cheer you on!
Even though I’ve been temporarily sidelined with a (freak) injury and the unfortunate infection of that wound, I’m on my way to Ventura, California in a couple weeks to realize my dream of riding in the Southern California Bike MS fundraiser. I’d be incredibly grateful if you’d throw a donation my way – no matter how small – to help raise funds and awareness for multiple sclerosis. The National MS Society does great things for people with MS and their families. If you’re unable to donate right now, I get that, I really do. You can help in other ways! Would you please post a little about my ride on your Facebook and maybe Tweet too? I need all the support I can get.
Like, seriously. I don’t have a single donation other than my own so far. I’m extremely embarrassed about what a crap fundraiser I am. Ughh.
Thanks, and, as always, Big love from me to all of you who take the time to read and muse and dream with me ~