I haven’t posted for some time because my life has had some huge changes I currently can’t speak on. What I can say is that the terror I felt at my uncertain future after my accident was nothing compared to that of my present circumstances. Though my rose colored glasses tell me this should never be the case, that someone up there running the show should have realized I have met my quota of crappy life experiences, we all know that the idea of a just world isn’t the truth of things. Terror, at some point, seems to be the price of admission to life no matter who you are. No one comes out unscathed. What I want to talk about today are some practices that are keeping me standing, so to speak.

After my accident I foolishly believed that that one monumental event would be the only BIG hurdle, paling all others in comparison for the rest of my life. At the time it felt like something I would never get over. Lets face it, to some extent that’s true, but it also couldn’t be farther from it. In the following years I have grown in ways I could never have predicted and have had more than my fair share of low points too. None of which have been to the extent I’m experiencing now.

Vulnerability-The emotion that can leave you up at night.

Difficult times wreak havoc on emotions often leading you to feel things that you’d do just about anything to get rid of. But, feelings, no matter how seemingly horrible remind us that our hearts are still beating and we are still breathing, giving us the opportunity to be accepting of ourselves and connect to the essence of who we are at our very core. Difficult times leave us in a place of vulnerability. For those of us with disabilities, that is often a place we live in regularly, making those times cut even deeper or conversely slowly numbing us to the emotion of the situation altogether. Vulnerability is a difficult topic and emotion people struggle to admit to. There are some amazing things happening in the study of vulnerability. Dr. Brene Brown speaks to this post perfectly in this amazing TED Talk she gives on the subject. I encourage you to watch and contemplate how vulnerability affects your life.

We all fall prey to worrying over what we cannot control when things get tough. In any difficult situation I’ve found that to be the case, but when the sky is falling, running around in circles with your hands in the air isn’t exactly a helpful practice. The trick, then, is to be able to recognize what is and isn’t in your control. Instead, concentrate your efforts on things you can do to remedy the situation. The idea that worry isn’t productive sure isn’t a new one. Sometimes recognizing what exactly you do have control over in a situation can help even though it’s often difficult. Even more difficult is allowing yourself to really feel the emotions you have at the time, no matter what they are, and allowing yourself to be vulnerable in the face of the things you can’t control.

In my current situation, there isn’t much I have control over at all. Throughout the last few months, I have really had to dig deep, working to consciously identify those things that I can do nothing about and accept my own suffering over what just is. I’ve had to accept, and be, down on my knees, grateful for it. Buddhism is based on the belief that life is suffering and that it’s in the process of learning to let go of that suffering that leads to the expansion in consciousness. It doesn’t matter what faith you are or if you have none at all, the process can still be the same. Your situation will change when you stop labeling it good or bad and let it be what it is. I think I would have exploded by now if it wasn’t for that constant practice of gratitude for those things I would normally call “bad,” the willingness to accept the pain incurred and really feel it, and then the conscious effort of letting it go with the faith that it too has a purpose.

All of this is fine and dandy on a philosophical level but what about practice? I can’t tell you what will work for you. Maybe in the explaining of my process you’ll find something of value. Being frequently under attack has honed my ability to recognize when I’m demonizing a person or situation. I tend to go into, “this is the worst thing ever,” mode. Followed by, “I’m never going to get through this,” mode. I allow myself to go though it forgivingly, to process until spent. Somewhere in the midst of flagrant venting and crying (my poor friends and family), that acceptance lets me breathe into the situation and take pause. It’s that moment of recognition of pain that gives me the opportunity to consciously say “thank you” for the hurt. It gives room for me to have faith in the purpose of it and the opportunity for me to then say, “I let go. And so it is.” It’s an exercise vital to my personal growth I’m grateful for getting a ton of practice at.

So, my point today is to pay the price of admission. There’s no one up there keeping track of our capacity to experience painful life experiences. We all have to figure out how to weather them, to grow from them and see them for what they are. So practice embracing the “bad” events in life with a conscious effort to be grateful for them and remove the negative label. Embrace the bills because they are supporting employees somewhere. Embrace the illness because in the loss of loved ones, lives are often touched. Embrace not just all the ways you are blessed but all the ways you feel you have been cheated or wronged because we of small minds have no clue what kind of butterfly effect will come of them. Be grateful for everything. Be vulnerable and accepting of your own emotions because, as Dr. Brown found, that’s the way to connection and that is the point, isn’t it?

You Forgot What?

Today’s blog post is for all the paralyzed readers out there or anyone who needs special equipment to go the bathroom. Whether you’re new to paralysis, or an old veteran, we’ve all had to consider what would happen if we left needed care supplies behind. After my seventeenth year anniversary in the chair I had my first real big whoopsy and it didn’t turn out at all like it should have.

Anyone who’s done a stint in rehab has gone through the dreaded worst case scenario talk. You know, the one where your therapist says ”If by any chance, you forget your catheter at home, you need to know what to do.’

Well no kidding right! We assume that we know what to do. With a thirty year veteran nurse for a mother and being a former licensed nurses assistant myself, I know I did.

Over the years I’ve attended a few of these classes. Everyone’s answer is always the same, go to the emergency room, right? Seems totally logical. But that’s not what we learn in those classes. We learned that hospitals are only for emergencies and if you happen to leave your cathing supplies behind that you need to call your local medical supply company. There you should be able to pick up what you need. To all those rehab therapists out there offering this advice, I’d like to call bull.

When traveling home from Kentucky I happen to accidentally leave my big backpack full of cathing supplies at our winter home. It was something we didn’t realize until we were at least five hours out and about eleven hours from home.

So what did I do? Well, first I had a little heart attack and then my friend and I jumped online, finding the closest medical supply store. With a thirty foot gooseneck horse trailer we navigated through Lord knows where West Virginia in traffic and finally found a place. A place that didn’t carry catheters and didn’t know anywhere else that did. From their parking lot we called around to a bunch of other places with no luck. In a last ditch effort I called a local rehab hospital thinking that they would know of a local medical supply store that would carry what I needed. Surprisingly they did not. Thankfully, they were kind enough to invite me to their facility and give me a catheter avoiding an ER trip. Never second-guess the kindness of nurses.

Wheeling out of the rehab center clutching my new catheter kit so tight that you would swear was full of hundred dollar bills, we went down the local CVS and found the rest of what I needed for the trip. The entire ordeal took between one and two hours before we were able to get back on the road.

What did I learn from this little fiasco?

You can’t just call a medical supply store and find what you need. After calling around to 10+ places I still came up short. I was in a larger town in West Virginia too, one that should have had at least one type of catheter for sale, but it didn’t, and no one at those stores knew enough to provide assistance. It’s not like there’s a directory of places in each state selling these things, though maybe there should be, and it’s not like the information is easy to find without actually calling. If straight cathing is your only method of going to the bathroom then this is a huge problem. Leaving your supplies behind happens, so what should you do if you can’t depend on medical stores like naïve therapists seem to think?
I plan to stash a catheter in my truck somewhere. I can get everything else anywhere else but a catheter is a necessity. If I have at least that in my glove box, I’m good.

What if you don’t have that? Well, you should try the local medical supply stores first. Should that fail, I suggest doing just what I did. Call the closest local rehabilitation hospital and fall at the feet of their nurses. They’ll find a way to help if they can. And of course, if you happen to be experiencing any type of autonomic dysreflexia, just go to the local hospital emergency room. Don’t pass go and don’t collect $200.

I Have A Dream

I have a dream that one day there will be a place where people with mobility challenges will have access to guaranteed care, community, and quality of life:

• Where they can live and die with dignity.

• Where every step to retain independence will be taken.

• Where no one needs to live in isolation or become a burden on their friends and family.

• Where they can find camaraderie.

• Where they can engaging in activities that are accessible to all.

• Where they can live in a community that understands them.

I’m getting older that this is more so the case. I wonder, will I become a burden on my son in my final years? Knowing he could never take care of me, and never wanting him to. I worry, will I be forced from my home into a nursing home sooner rather than later? What will that care look like? Will it be a home full of the forgotten?

We all have these thoughts, able-bodied included, but having mobility challenges leaves us even more vulnerable. I have a dream to ease that fear as much as humanly possible.

Sounds nice right? What solution am I specifically talking about then? In my post American Atrocity I hinted at a solution to the problem of care that many of us face. In this post I will describe what I hope to have the privilege to create. This is my call to action for anyone who thinks this a valid idea: please contact me if you’d like to be involved. So here it goes…

What if there was a Life Plan Community created just for people with mobility challenges? For the quads, para’s, hemiplegics, and stroke survivors in our country? I’m talkin’ about a few hundred acre community where people with mobility challenges can live with their families. Not stacked on top of one another in low income assisted living but in a community filled with accessible recreations and homes. One that has accessible gardens to grow the community’s food, paved bike paths, trails, pools, golf, stables, bowling, an accessible gym, biking, yoga, meditation, UTV’s, and any other interest someone could want to partake in. One that has a full staff of recreational therapists available seven days a week to help residents take part in whatever they desire to do. What if it had physical and occupational therapists with a full treatment gym, psychiatrists, general practitioners, and a a unit for more intensive care should the need arise? What if it had a restaurant, drug store, provided equipment service techs, lawn care, house keeping, laundry services, day care, drivers, and of course round the clock care that could be as hands on or on call as you like. And for the clincher…what if the place was managed by it’s residents?

Life Plan Communities, catering to the elderly, are popping up all over America. Here in Vermont we have a fantastic, well established one, called Wake Robin and an up and comer called Morgan Orchards. Morgan Orchards doesn’t have as many community programs or a focus on sustainability, which I love, but it will get there. Why not create one for us? I know it sounds far fetched. I know it sounds costly. I would counter that investors can always be found. Money can always be raised. Pooling resources makes things cheaper and easier for all. Like other Life Plan Communities it would need people willing to pay a one time fee and a monthly rate for lifetime care. If people can’t afford than they work in the community and help to fundraise for their entry. Everyone has their strong points. We just need a place where we can put them to use.

In a time when our government cares less and less about providing for people with mobility challenges it is up to us to take the high road and find a solution. It’s up to us to prove that we too have human capital. We deserve to live in a place where we aren’t bound by our limitations; Where we have community and support; Where we don’t have to worry about being a burden to loved ones just in order to get up in the morning. We can provide those of us with mobility challenges a better life than many of us face now. A place that will assuage the worries and fears that having a disability leaves you and your family with, in favor of a place where every door opens. Where we won’t be left behind.

To anyone else reading, put yourself in our shoes. What if it was your parent or your child worrying over a less than secure future? Or unable to even do the simplest thing like visit a friends home because it isn’t accessible? I can’t tell you how many things I’ve missed in my life because I couldn’t get in.

So, if you or your loved one would benefit from such a place then by all means comment. Contact me personally if you’d like to help me get this project up and rolling!

My friends and I racked our brains trying to come up with a title that adequately describes the phenomenon that features in this week’s blog. It’s something that I thought, for the longest time, was just happening to me. After speaking with other wheelchair using friends, I’m hazarding a guess that that I’m not the only one.
So what is this mysterious phenomenon? It’s the general attitude of imposition those with physical limitations experience when dealing with their various service companies. That includes adapted vehicle dealers and medical supply companies that service things like walkers, hospital beds, lifts, and of course, wheelchairs. It’s not all companies or the companies as a whole, but a good portion of people at them that don’t even bother to pretend that I am, in fact, a customer; that they should be catering to me on my time, as a person with specific needs, which are their job to care about. Oh no, as a client with mobility challenges I am often lucky if I even get a call back within a few days. That’s even if my chair is having major malfunctions. Yet my service company’s answering machine says that calls made before three PM will be answered the same day and those calls received after three will be answered the following business day. I have never been called back on the same day. In fact the service department has never even answered the phone. Generally, I wait around a week for a response.
My friend Ashley, a paraplegic who uses a manual chair, said this when I asked her about her experience with her medical supplier, “Before I moved, I had planned on getting new tires for my chair. It took weeks for him to get back to me, just to tell me he was quitting and couldn’t get them for me.” My friend Morgan who is also a quadriplegic had much the same thing to say, “When it takes a week to return a phone call for a repair, it’s a little ridiculous.”
I have waited and waited for calls back when I’ve needed a repair, and often I’ll let repairs build up so that I don’t have to spend my time pestering, only to be ignored. I’ve waited upwards of a month to have my wheelchair fixed with a manual chair as a backup. As anyone with special needs knows, living without the necessities, like my wheelchair is essentially taking my legs and saying, “Sorry. This is going to take a while.” It’s simply unacceptable.
Over the years I’ve accumulated my share of stories. Like the time I waited almost a year just for bearings for my shower chair when my wheels were about to fall off. My most recent fiasco where it took six months for me to get a new wheelchair that would go into my new adapted truck when the maximum waiting time should have been two and a half months.
In the case of this last scenario, every delay was due to the poor communication between manufacturers, vendors, and representatives of both wheelchair and adaptive truck companies. They ended up either dropping the ball, dragging their feet, or shoulder shrugging as if they couldn’t give a care, even as they were paid to. The combined payment to the vendors was upwards of $100,000.00. That’s not Fortune 500 billions, but that’s not chump change either. Spending of that magnitude should at least afford me some respect and prompt service. It certainly shouldn’t warrant triple the wait time. Especially with both vendors knowing that my chair was sitting at an angle, falling apart bit by bit, and the van I had was not set up for me to easily bring my son with me. I can’t imagine that they would look forward to spending fifteen hours a day in a chair that leans heavily to the right. The story only got worse when I went to pick up my new $72,000 truck, but anyone wanting to hear that sordid tale can drop me a line as it’s too lengthy for this post.
Mind you, these extended waits can often end with providers saying, “Sorry, but your insurance doesn’t cover that.” It’s often just a couple of weeks in that case, but still, who wants to wait that long when they really, I mean really, need something? I would like to get into the absurdity of things that insurance will or will not cover and the utter ridiculousness social security plays in it, but again, that’s a nugget for a future post since it’s way too big to cover here.
So, what’s causing this problem? The excuse I get time and time again is that delays in service repairs and equipment purchases are mainly a problem of insurance. And I quote “I’m really sorry, but we have to wait for prior authorization.” But that doesn’t explain the same slow response to initial phone calls, no matter insurance coverage. Maybe it’s a case of too little competition in my small state? Or the possibility of not enough staff to cover those needing service? Whatever the cause it needs addressing.
In many instances I’m sure the prior authorization excuse is the truth, however, I have workers compensation insurance. Shouldn’t that make a difference? You know that old saying “If you’re going to get hurt, make sure it’s at work.” Well, I did, and it was, so I should get pretty much whatever I need right? Expedient repairs in the least? Overnight shipping? But no, that’s not the case. In most situations, I get the same weeks worth of wait that my wheelchair using friends, covered by Medicare do. Only once have I received the luxury of overnight shipping, and I paid for it my damn self. That, in and of it self, is craziness. How is it that I can order some “doodad” on Amazon.com using my Prime Membership and, including processing time, still get said “doodad” in a week…from Japan, but I can’t get wheelchair parts for weeks to a month? Don’t insurance companies know that broken equipment can lead to injury? Injury costs money. In the case of my friend Ashley who has a broken seat cushion, that could mean a pressure sore. One that could end in surgery if it failed to heal properly. Is that really cost effective? I can’t imagine insurance companies would knowingly be that inefficient with money (wink wink).
It may be a case that Vermont, as a small state, has few competing providers leading to a lack of competition. However, I’ve experienced the same lack of service right outside of Boston.
The point here isn’t to complain but to point out that this is not the way a service industry dedicated to helping those with disabilities maintain their independence should treat their customers. When I asked my friend Morgan if she thought her medical supply company was there to serve her needs, here’s what she said,”No I don’t really feel like they are there to serve me. It’s doesn’t seem like it’s a high priority for them to fix wheelchairs even though it’s crucial for us to live day to day.”
So who’s to blame for these crazy wait times and crappy treatment, and what do we do about it? I think it’s a combination of problems, and a lot of it has to do with culture. When a disabled person in America has an issue completing a task we say that there is a problem with the person. In other countries they consider it a problem with equipment. It’s a difference in culture. Any disability goes against our country’s need for perfection and gross materialism. I feel like even the famous people with disabilities are viewed as inspirational, yet less, by many. This fact bleeds into the insurance industry (I’m not woman enough to delve into the American insurance mess today). The American people have been at the mercy of insurance companies for longer that I can remember so we’re use to their organizational culture being centered around making shareholders profits, not being of service.
My theory is that these medical supply companies and adaptive vehicle companies work so closely with insurance companies that they have adopted the insurance company business culture (shareholder profits taking presidents over customers), knowingly or not. The higher ups probably don’t project it on purpose (in some cases), but it oozes down the chain while employees get bogged down with the insurance company red tape. Couple that bad culture with bad management practices ie: under payed, over worked, under valued individuals who don’t carry a strong company mission in their hearts and you get— the crappiest service ever—suffered by those who need the best. It’s bad business…period.
So what do we do? Call these companies out, just like I am right now. Their treatment of the disabled and elderly is deplorable. If they want to fix the problem then here are some of my solutions: If you want to provide great service and a stellar company culture, than hire disabled employees or employees with some kind of emotional stake in the job such as a disabled family member. Then make the company employee owned. Build a strong mission statement that permeates your company culture and for the love of Christopher Reeves, please get a service secretary that returns calls, guarantee free, fast shipping and make your client a priority despite insurance coverage!

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.