Monthly Archives

June 2017

Finding Your Ikigai

June 30, 2017
Combined Driving

Anyone who has ever met me knows that I am passionate about horses. Always have been. Like literally–out of the shoot hardwired that way. I’m pretty sure anyone who doesn’t share my obsession and unwittingly stumbles onto the topic thinks I am just plain annoying. I’ll admit it. Most people don’t get it and that’s okay. I came to accept that years ago. I always just assumed that horse would just be a hobby, an annoying quirk that others tolerate. A fountain of verbal diarrhea I can’t seem to stem the flow of. When another horse lover is found a little light in my chest goes off blinking eureka! Happy, happy, happy!

Let me tell you, nothing in the aftermath of my accident was as painful as the death of my passion. With the news of my paralysis came the drying of my well of obsession. I was a shell of a person. The loss of my independence, the loss of my hair, the loss of my looks (or so I believed then), the loss of future dreams all paled by comparison. I tried to stay involved, hanging onto what little wisps of hope I had that I would magically start walking and be able to ride. I anchored myself with the belief that if I prayed hard enough (the faith of a mustard seed right?), visualized my healing long enough, ate just the right foods and fueled my healing with my desire to be a valid horse woman again, that I would heal. I mean we’ve all heard about “that guy” who was a quad and can walk now. Or “that woman” who spontaneously grew her face back so why not my hair? Why not my spinal cord? There are medical miracles everywhere so why not me right? Well, I’m still waiting.

After sixteen years I haven’t given up, but those first five years were hell for me. Let me just say, I did not handle things well. I drank a lot, smoked a lot, and my life lacked even the faintest amount of direction. Newly engaged after my accident, my relationship went to hell. My sense of self was destroyed making it impossible for me to love my partner. I couldn’t be present in my relationship when many moments left me mad as hell at my circumstance. I tried to hide it well. Did a fair job by the amount of people always telling me I was an inspiration, but inside I was just existing between bouts of righteous acrimony. I spent years going through mostly fruitless surgeries and days of endless therapy. I was miserable and didn’t even know it.

I never wanted to learn to carriage drive. I thought it just consisted of pleasure driving—a few laps around a ring in some old antique wearing a frufruish getup from the same era where I could win at Concours d’ something. Not my bag. I always wanted to be a three day eventer. I wanted to be a hardcore competitor. In a moment of weakness I called the United States Driving for Disabled’s (USDFD) New England representative Mary Gray and learned about the sport of combined driving. I won’t get into the history of the sport here but the best way to describe it is to say it’s a three phase event modeled after three day eventing. For a little taste check out this amazing video from Cavewood Productions. It was during that first conversation that I also learned about the Para-Equestrian World Championships for combined driving. It took me about a half a second to set my sights on the Worlds as my future goal.

After just finding out about combined driving my life changed completely. I planned a trip to the USDFD headquarters in Georgetown, Kentucky. I honed my slider board transfer skills so that I didn’t have to take my lift to get me out of my chair and off I went. The moment I got those reins around my wrists my life fell back into place with the audible click of my heart snapping back together. You see, I had started riding at eight years old on a wonderful Fjord mare named Tryggen and started driving with another wonderful Fjord gelding. It was a full circle event that put my life back on track. I still can’t describe the joy of being able to trot across those beautiful Kentucky fields. The wind in my face. The sound of Freddie’s footfalls in my ears and the feel of his mouth at my hands. It had been five long years since I had been able to communicate with a horse that way. I was enraptured.

I had my first carriage ordered before I even left Kentucky and started searching for my first driving horse. Soon after I went back to school focusing my studies on psychology and business so that I could help others in my position. After meeting the current USDFD president I harbored more dreams of sitting on a nonprofit board where I could help others experience my new found freedom. My life finally started moving.

Trotter and I at Waldingfield

I bought my first driving horse, a Dales pony named Red Prairie Trotter about a year later. As a three year old, I had him trained specifically for me and soon after got my first carriage. I bought a piece of land and built my own home. Over the years I had some difficulty getting the right equipment and the right horse needed to reach my goals. It’s a bit of a sordid story that I’ll leave for a different time so that I can keep true to the importance of the topic at hand. Trotter and I attended our first show a year after I bought him where I was interviewed by my local paper. After the article I was approached by the founder of Rhythm of the Rein a local therapeutic riding program and was asked to sit on the board of directors. I said, “Yes of course,” and have sat as the board chair for about six years. That one article also became the inspiration for a new nonprofit that Mary gray and I later cofounded named Winning Spirits.

You see, what I had thought would always be an annoying obsession had ended up being what the Japanese call my ikigai or my reason for waking up in the morning. I had always known I loved horses but it was nothing more than a hobby…right? Wrong. It’s what gave my life meaning. It’s what made all the suck I experienced everyday bearable. The thought of knowing that someday I would be in the position to help someone else feel the same elation I was able to experience while driving. To feel like a real horse person again. Free and uninhibited. A person can work through any pain if they have a good enough reason. Finding your thing is the most important task in anyone’s life, if you ask me. Knowing without a shadow of a doubt what brings you joy despite current circumstance. For some that may be a few things. For me it’s mostly just the one, but for those with no clue…a life of listless suffering. So many cause others to suffer inadvertently by not being able to deal with painful circumstances, past or present. The trick to dealing with what seems like insurmountable crap is finding a way to weather it. To cope. Figuring out what brings you the most joy into your life, and pursuing it, will bring more joy. None of this is new or exciting information. But no matter how deep in current suck I am, I can still say when looking back at my life that this is true, and I’m not some self help guru or televangelist. I’m not trying to get you to buy anything either. I’m just Sara. A bald, slightly round, single mom in a chair with a serious love of horses.

So, something especially shitty happens to you…now what? Find your ikigai. Make it your work. Make it your life’s purpose. It will be your saving grace. It was for me.

American Atrocity

June 30, 2017
The Dark Side of the Chair

I want to delve right in and talk about the most, in my opinion, gut wrenching aspect of being disabled; the state of health care today…no, seriously. It is an enormous issue. Not in a ‘big big hospital, corporate health care kind of way,’ but in a ‘if my caregiver calls out of work how am I going to go to the bathroom or worse yet, take care of my son’ kind of way. People often say, “Well, just call in a replacement, call family, call a friend.” It’s just not always that easy. Everyone with limitations has different needs whether physical or psychological. For those of us with more complex care, we depend on those with medical expertise to help us complete the most necessary, yet mundane of tasks. Sometimes, like many elderly, we just need a helping hand. A second person in the house. Many, like me, need the help of a Certified Nurses Assistant (CNA), a Licensed Practical Nurse (LPN) or even a Registered Nurse (RN) to escape the clutches of life in an institution. Institutions don’t offer the quality of life found in our own homes. Life on the outside comes with a lot of perks, mainly freedom, but it also comes with serious emotional and logistical downsides, such as: how do you secure care, agency or private, which is better, what about family? Couple these questions with a country wide nursing shortage and a crazy downward trend in younger generation’s work ethic, and it’s easy to see how we with disabilities have a HUGE problem.

Now there’s a big basket of BS that has contributed to the the world wide nursing shortage, most of which center around the aging baby boomer population, low wages paid, and, unfortunately, the type of people looking to fill the job. Don’t shoot the messenger, I’m not the only one of this opinion. Check out this New York Times article here. What may just seem like a sorry future for Americans with disabilities, is our current day to day reality. Now let me backtrack to the points above and explain.

So you’re disabled, right? Well, whether you were born that way or had some type of life event that sent you to the hospital only to have to hire help in order to go home, you or your family had to at some point decide whether to hire an agency or privately hire. I started off with an agency, the Visiting Nurses Association (VNA) to be exact, and at twenty years old after a eighth of a mile drive in my chair up to the hospital to attend a friend’s baby ultrasound, I was told that VNA was “in-home” care and I was expected to stay there. Now I had let my caregiver know that I wasn’t in need of assistance for the duration of the appointment, so she went and checked in with her office. That caused an uproar. Apparently I was not allowed to be alone, even with a friend, even for only a half hour or so…in a hospital. Not only that, at the time they were not able to drive me anywhere in my van. Crazy, I know. Needless to say, I decided to hire privately after that. Now, with a fourteen month old son I still have to hire privately. Many agencies will not include care for him. The workers compensation insurance responsible for my care would require a WWIII battle to pay for a nanny also. I could probably argue for some daycare coverage or get some state assistance because of my disability but really, I don’t work. I don’t want to send my son to be raised by someone else, so that I can receive care. That’s not fair to either one of us. As an active horse person my lifestyle is just not conducive to having most agencies provide my care.

For one, my care is particular and so am I. I don’t want a revolving door of caregivers up in my business, in my home fifteen hours a day. I doubt anyone else disability or not, would either. It’s an intimate relationship that forms between patient, family, and caregiver. Many agencies make a real effort to send the same people, but with high turnover rates and the shortage of nurses assistants this can be very difficult. So you have new people frequently, they don’t do anything but light house keeping and won’t help with the baby. Not for me.

The alternative…hire privately. Sounds good right? You can hire someone to do whatever you need. In my case help with my son, clean the house, garden, and help me drive. But where do you find these people? Over the years I’ve had my best luck through www.craigslist.com. I’ve also tried getting a list from my local hospital, newspaper advertisements, and Facebook. Since I am looking for someone with a unique skill set it has been hard to find help. As the years have gone by, ridiculously hard. Couple that with needing at least one person who can travel when needed and I have gone without a full staff for years at a time. Forget having enough people to fill in. That leaves the burden on my family. For me, that’s my mother, a veteran RN, who is not yet at retirement. Over the years most of my caregivers have called out sick, knowing my mom would cover, using her devotion against her. Leaving her feeling used and angry at their lack of responsibility and me feeling like even more of a burden.You get to a point where you’re just willing to hire a warm body and cross your fingers that it won’t blow up in your face.

It’s a roll of the dice with three possible outcomes. First, and most probable (as seen in the New York Times article), you have lesser educated, low income, minorities. Now here in Vermont we don’t have many minorities. We do have less educated low income women who get their CNA just because it’s easy to do and there are many educational grants available. Second, you have people who get their CNA as a steeping stone, or addition to, their future schooling to become a RN. They have higher aspirations, are usually committed, and will be moving on shortly. Third, you have those who got their CNA because they truly love helping people live their lives out in their homes. They’re dependable and become part of your family. Even if they move on for whatever reason, they stay friends and stay in touch. These people are worth their weight in gold and are damn near impossible to find. The first two groups often fall prey to the same lack of work ethic that seems to have affected many of my generation (Generation X), and is increasing in frequency through the younger generations (Millennials). As a person who depends on someone else’s help to just go to the bathroom in the morning, poor work ethic is the worst trait in an employee and one I see often.

Happy Grandma

So what happens in my house when I’m short staffed already and someone calls out. Crying…I’m not kidding. My mother stays with me and the baby at night as well as covering two days a week and works part time at our local hospital. She also can’t drive due to a recent concussion. So, when someone calls out she is already taxed. Hence the crying. She cries from exhaustion. I cry from guilt, anguish at my life’s turn of events, and the all consuming terror of acute vulnerability that comes with not being able to care for myself, my son, or my mother as she ages. I cry from the heart ache of knowing that I have become a burden to those I love regardless of whether or not it is a burden they gladly accept. Every single time this happens all I can think about is what will happen to me and Gabe if, God forbid, something happens to my mom. Nothing I can write here will adequately describe the terror and loss felt when unwanted thoughts pop in your head saying, “My life wasn’t supposed to be like this. I never wanted this. I should have just died because I hate this.” No matter how well adjusted you are to your situation we all have our moments of overwhelming grief for what we think should have been. Moments where the thoughts of our future leave us with throat tightening anxiety. As a community of aging and disabled human beings we need to work together to find solutions. Consider this my entrance into the conversation. Luckily I have friends who are also caregivers that I can sometime call, but they have their lives too. I’m always left depending on their kindness and love for me to fill in the gaps. A fact I try never to take advantage of, but always seem to have no choice about. I can only imagine what my world would look like without this constant worry.

Nah that only happens when you finally become disabled.

So what’s the solution? I’m not really sure. I have tried advertising in different places. I’ve fought the hard fight with my insurance company to finally, after fifteen years, get my caregivers a raise in pay. I have bent over backwards accommodating my caregivers to the detriment of my myself and my child. I’ve even thought of taking on a live in, maybe from another country, but haven’t gone that far yet. Living in rural Vermont I wonder if I need to move to a more populated area in search of the care that I need. Maybe I’m just an ass to work for (a distinct possibility). That last option, moving, is one I will be most likely to choose in the near future. I have a goal to move onto the same land with one of my most dearest friends but my situation always leaves me thinking…What about those without support systems? It’s something we need to be thinking about as a country, What will happen with our retired baby boomers? No one should feel like a burden to their family and friends. No one should feel so vulnerable they sometimes wished they had died…No one. As a society we should at least guarantee our most vulnerable have more than just the most basic of securities. As it sits we don’t even have that. There must be a solution. I have an idea, but that’s for another post.

To Breed or Not to Breed

June 30, 2017
Parenting from the Sidelines

As I continue blogging I will post about my past experiences with motherhood, but for now I want to begin with what’s currently on my mind.

When my partner (at the time) and I discussed the possibility of children in the future, I told him that he would need to be mister mom. That as a quadriplegic I wouldn’t be able to do much of our child’s care. He of course agreed, but I’m pretty sure he didn’t have a clue what that was really going to entail, and neither did I. However, after that possibility became a reality, I somehow foolishly thought I would be able to do more, that maybe it wouldn’t be too bad. Stupidly, we hadn’t considered the toll it would take on our already strained relationship. Yes, I know all couples go through the same thing, but for us it was different. Our relationship was tough out of the gate. We loved each other. That was no question, but we were oil and water. Still are. Add to that the total lack of alone time due to care giving needs and then a new baby and well…I had never imagined I’d end up a quadriplegic and a single mom. As much as I had always wanted children even I was smart enough to know I couldn’t do it on my own and would never want to. Thankfully, I do have the support of my family and friends as well as my caregivers so I’m not really doing it alone per say but you get my drift.

As a mom you want to do everything for your child, be everything for your child. As a disabled parent that is not the reality of my situation. Not that it is for any “normal” person either. There are many things that I just can’t do. I can’t give my son a bath, can’t change his diapers, can’t tuck him in his bed and pat his back until he falls asleep, can’t dress him, can’t play with him to the extent that I would like, can’t help him learn to walk, can’t take him horseback riding, can’t keep him out of trouble when he’s getting into things.

Gabe Filling the Hopper

I can give him a bottle and feed him to some extent. I can be up with him at night and comfort him when he’s sick. I can read to him and sing to him, but it’s those hands on things that I miss. It’s when he falls down and is crying his little eyes out and my caregiver gets to pick him up and cuddle him because I can’t that leaves me feeling the most useless. It’s when I watch others roughhouse outside with him knowing I never will. When they take him down the slide or dig in the garden with him, that’s when I feel less than. I know I shouldn’t, but my heart still clenches at the loss. Fifteen months old has been a hard stage for me. It was easier for me to do things with him when he was smaller. Now, he is almost thirty pounds, strong as an ox and just as stubborn. I have a hard time doing a lot with him because he’s so busy. In turn, I’m regulated to the sidelines, hence the title of this blog section.

So what do I do when I’m feeling like a failure as a mother? I embrace the small things I can do with him. I spend every day with him. I talk to him, cuddle and read to him when he’ll permit it. I try to watch every moment of fun he experiences with others. Be a part of it. I tell him how much joy he brings to all those around him and I hope that will make up for the things I can’t do for him…with him. I ask my caregivers to give me my son when he’s crying. This way I can still be the one he looks to for comfort. I stay involved in what’s happening to him. I watch his baths and decide what he eats. I give his bottles when I don’t have my hands full with something else. I have come to accept that the people in his life enrich it in different and important ways. He gets not just his biological family but pseudo aunts and grandmas, often with their own families in tow. It’s an asset to him to have so many love and dote on him. To have people doing his care that are fresh and rested, instead of tired, impatient parents. He is blessed.

To those of you reading this that are caregivers, try and be mindful of keeping the child-parent relationship strong. It’s easy to see a child you care for cry and just scoop them, up offering comfort instead of handing them to their parent. It’s easy to just make decisions, especially if you are a parent yourself, without asking what the disabled parent wants done. It’s easy to forget that the child isn’t your own. Easy to loose sight of the fact that though you may love caring for the child, the job itself is often fleeting, with high turn over. The one constant in the child’s life is the parent. It’s important not to inadvertently take on too much of the parental role. Love them well, but keep in mind that if you walk away for whatever reason, you will be leaving that little lift behind. It’s not just a job. You will be missed.

For those of you who are or will become parents living with a disability, do as much as you can within reason. We all walk that fine line of balancing the desire to do for ourselves regardless of the time it takes us. There are a ton of things I can do on my own, but what takes me a half hour can take my caregiver thirty seconds. You have to weigh the value of your independence verses living a fulfilling life. If I did a fraction of what I can do on my own, it would take me all day just to get out of bed, only to have to get right back in. What quality of life would that be? The same is true for parenting with a disability. You have to weigh the quality of activities you do with your child. Discard the more difficult and time consuming activities in favor of those more enriching to you both.

Having a child, no matter your physical or psychological ability is a balancing act. Many times I have to wait for what I need with my poor caregivers or mother running ragged to keep up with both Gabe and I. As a baby Gabe often has to wait when he shouldn’t have to. On the other hand I hope the experience will build a wealth of ingrained autonomy and patience that will serve him well throughout his life as he grows. Does suck? Yes. Is it worth the trade off for both parties? I hope so. From my view in the chair I’d say it is. So, if you have limitations and are contemplating becoming a parent you know what to do—weigh the potential downsides with the future benefits. Just remember not to limit yours and your future child’s potential. If I can manage, I’m sure you can to (note: I’m not advocating for every idiot to have kids. Careful consideration should be applied).

Philanthropy for the Disabled…What?

June 30, 2017
Nonprofit Work

When people hear the word philanthropy the first thing that comes to mind is money—obscene Bill Gates kind of money. But it doesn’t take a fat stack of cash to be a philanthropist. All it takes is the willingness to say yes, yes to your neighbor, yes to your favorite nonprofit, yes to your local club, yes to your aging grandmother. Just saying yes, to everything and anything that won’t put you in a bad position. That’s what makes a philanthropist. You may be wondering what in the world this has to do with disabilities, but I’d argue that it has everything to do with disability and living a fulfilling life despite daily struggle.

Having any sort of a disability tends to leave a person focused on lack. What you can’t do, wish you could, don’t have, and wish you did. Focus on that lack and you will always feel lacking. We also have a propensity towards self-centeredness. It’s the nature of the beast. Missing the most basic control over one’s life tends to have you over compensating where you can. It leaves you hyper-vigilant over what you can control, hence the self-centeredness. Don’t get mad yet…we need to be that way. It’s functional. For some of us, our caregivers are our hands. We have to communicate our wants and needs, but sometimes, we can take it too far. Combine this need with nagging thoughts of lack and you get a nasty negative stew. The best way to combat this is to give.

Many people are of the mind that you can’t give what you don’t have. This mindset infects people with mental and physical disabilities as well. I imagine many wonder how they can give when they can’t even take care of themselves or how they can give when relegated to social security or something of the like. The truth is, we all have skills. We all have a bit of time or some extra coin in our pockets. The willingness to get involved and give what help we can offer to someone in need, or a cause we care about, is what makes the best philanthropists. The ones that help their aging neighbor get their groceries in. The ones that donate ten dollars a month or volunteer a few days a week. It’s those people that keep nonprofits going. Most nonprofits work towards the betterment of society and many will in turn, help you.

My favorite quote from Eckhart Tolle is “Suffering has a noble purpose, the evolution of consciousness and the burning up of ego.” If life keeps chucking lemons at your head, then start squeezing. You’re still here right? You’ve survived. Make something good come out of it all. Don’t let your suffering be for naught. Use it as fuel for positive change instead of an excuse for self absorption.

For me, giving of my time is even more important than money. It allows me to experience connection to my passionate about. It allows me to be in contact with, and immersed in, communities of like minded people working towards positive change. For me that is horses and equine therapies. Take your ikigai and use it to direct your philanthropic activities (For those of you who haven’t read my post about finding your ikigai, you can find it here). Marrying the two together will give you a powerhouse of positive change in your life. All that passion and joy will spark your willingness to give and the next thing you know you’ll be all “This little light of mine. I’m going to let it shine,” all over the place.

I started volunteering when I was asked to sit on the board of my local nonprofit therapeutic riding program, Rhythm of the Rein. A fabulous program filled with a core group of dedicated supporters. After seeing an article about me competing in my first show with my Dales Pony, Trotter, founder Dianne Lashoones gave me a call and asked if I would be willing to serve. It was one of the best things I could have done, not for the program, but for myself. That was the start of my involvement in volunteering.

At first I had nothing much to offer but my time. Over the years I have been able to recognize my strong points and develop skills needed to be of service whether it be through college classes or self learning. My involvement has branched out into a few different organizations since. I went from sitting on the board of Rhythm of the Rein to chairing it. There, with fellow board members, we have an active role in making sure organizational overhead costs stay low and client service stays high. With diligent work we became the first Professional Association of Therapeutic Horsemanship (PATH) certified therapeutic driving program in the state. A friend, and fellow driver, and I founded another nonprofit called Winning Spirits (Also inspired by the first article) which helps disabled drivers wishing to compete. Competing in combined driving is a costly venture for able-bodied drivers, that is even more so for those with disabilities on a fixed income. I have also gotten involved with my local riding club. I manage each program’s web page, organize clinics, secretary events, create newsletters, bake, give money when I have it, whatever is needed that I can manage.

I tell you this not to glorify my accomplishments, but show you that everyone has something to bring to the table. Everyone can be a philanthropist. Giving to those in need takes your attention off yourself and leads you to moments where you can feel gratitude for what you do have. What you can do. Your life becomes filled with greater purpose, and thoughts of lack become increasingly fleeting. The act of giving freely without thought of personal gain allows the giver to experience the same positive benefits as the receiver. It’s twofold and opens you up to attracting more positive experiences in your life. There is a great movie called The Moses Code that explains this perfectly.

Helping someone else is the very best way to dropkick yourself out of a funk. Think about it, it’s hard to be concerned with yourself when your knee deep in someone else’s figurative hole. Just imagine what the world would be like if we all helped a little more? If we stopped thinking of ourselves and started teaching the next generation to value giving, instead of the rampant materialism, we see now. It’s the willingness to say yes, to strive towards philanthropy, to the extent of your ability, that will keep your life rich in every manner of speaking, no matter what life chucks at you.