Gimp Rant #57 – A Healthcare Vent

This isn’t going to be a lengthy post. This isn’t a post about the Affordable Care Act. This isn’t a post about President Obama. Nope, this post is much simpler than all of that.

This post is about putting the “care” back in healthcare.

Now then, before I go any further I should tell you that I actually do like my primary care physician. In fact, if I didn’t like this physician I’d have been gone long ago because I find the Community Health Network a maddening and non-user friendly experience despite their efforts to develop electronic records and to tie all of their various campuses and networks together.

Community Health Network is a Central Indiana based network of hospitals, clinics, pavilions, etc. with over 200 sites of care throughout Central Indiana. It has been recognized for its integrated health system and, indeed, its computer network is impressive and has helped me hang on for as long as I have given my own physician’s comfort with technology and its utilization as part of primary care.

From its own website, Community Health Network labels itself as “Central Indiana’s leader in providing convenient access to exceptional healthcare services, where and when patients need them—in hospitals, health pavilions and doctor’s offices, as well as workplaces, schools and homes.”

Now then, this is complete crap.

As someone who has played a central role in planting a web-based church, I wholeheartedly believe in the power of technology to create networks, increase efficiency, improve lives, and create another vehicle through which we can reach out and help people who all too often fall through the cracks. However, when we allow technology to dominate our systems of care we have failed those we serve. When we allow our structures to dictate how we serve, then we’ve removed the “care” from healthcare.

Unfortunately, it seems as if this is the direction that Community Health Network is heading.

A few years ago, or not long after I started working for my current employer, I decided it was time to get re-established with a healthcare network having mostly gotten by for years with occasional visits to specialists and, to be honest, spending more time responding to crises than actually investing myself in preventative care. As an adult born with spina bifida and also being a double amputee/paraplegic with a mild brain injury, I’d long ago given up on the idea of maintaining my healthcare like I did in the days I was on Social Security Disability. I spent nearly 10 years after college graduation working for an inner city hospital that was a wonderful employer yet not exactly equipped to deal with serious health issues like my own, but having gone from life on Disability to life among the employed and utilizing commercial insurance I’d quickly figured out that it was nearly impossible to balance fiscal responsibility and meeting my healthcare needs. So, for many years I just sort of got by and did the best I could.

While Community Health Network isn’t exactly known for its work with birth defects, an initial meeting with a former doctor impressed me enough that I decided I would go with her practice and maintain myself within this healthcare network for as long as I could or until such time as I truly needed expertise in spina bifida. After 2-3 years, this originally chosen physician left the practice and I was “assigned” to a new doctor within the practice.

I was skeptical, but I have to be honest and say I instantly found her to be fantastic. While she wasn’t exactly familiar with spina bifida, I was impressed with her openness and her comfort with the knowledge that she did possess. Like me, she possesses a quiet humor and bluntness that simply works well with this jaded, burned out on healthcare soul. She initially struck me as overly cautious, but over our first few months we simply clicked and I thought “Okay, this is a doctor I can really work with.”

I even found myself appreciating the fact that Community Health Network was growing into its utilization of electronic records, a utilization that created opportunities to actually connect with your physician (or their nurse) when it was needed. This computer network also makes it possible to better manage one’s own health records, keep track of labs, keep track of medications, pay bills, and much more. I found myself hopeful that this network would improve an already positive working relationship with my physician.

Now then, I have to be honest and say that I don’t completely understand how the entire electronic network ties together, but over the past few months it has become apparent that it is fractured, non-communicative, and rapidly causing a decline in the personalization that I have valued so highly from my physician and her practice.

When I message my physician through the network, I can most certainly still get a response and she continues to respond in a way that is respectful of my situation. Yet, and I may be wrong, it feels as if the network itself has been divided into different points of entry for different concerns.

I find myself wondering “When I send a message to get an appointment, do I even get the office? Do I get a different office that now handles scheduling concerns?” It’s not completely clear, but it’s VERY clear that they do not know me and they are more concerned with structure than service.

It seems like, and again I may be wrong, when I send anything from the various options available through their computer network that it goes to a different area and, for the most part, it nearly always feels like they don’t communicate with each other at all.

It’s very frustrating.

While I have great difficulty using phones during the day due to the nature of my employment, several months ago I began balancing my attempts to contact by electronic messaging with contacting my physician’s office by phone. I began to notice over time that even utilizing this more direct method of contact seemed to be met by more layers akin to trying to call Comcast and having to go through four layers of hell before you reach a human being who has a clue.

Again, it’s very frustrating because in those times when someone has the insight to speak to my physician’s nurse or even my physician it seems as if whatever need has arisen is addressed in a timely and effective manner. Otherwise, it was nearly always a case of structure before service.

Then, “it” happened. It’s the latest craze in Indianapolis and maybe nationwide – “same day” appointments.

Ugh. I hate it.

My physician, who already doesn’t have any hours outside of my work hours, suddenly was becoming even less available because of some idiotic and misguided mandate that the network would offer “same day” appointments for primary care, a service that seems to be occurring in most of Central Indiana’s major networks. If it works in the other networks like it does with Community, I’m surprised that there hasn’t been a mass exodus.

I have been trying for no less than three months to schedule an appointment with my physician, including three times when I have contacted by phone.  I have contacted multiple times by message through the Community Network and, in almost all cases, have inquired about specific days, times, or blocks of time. In nearly every case when using messaging, I’ve gotten an e-mail back saying “She doesn’t have anything available then. I’ve set you up for this time.”

“Um, that’s not what I asked for. I can’t make it then.” So, we’ll end up going back and forth multiple times and, on almost every occasion, I’ll propose alternatives and will get back another scheduled appointment.

It’s maddening. Yes, I’ve used that word twice in one post.

After finally catching on that either the scheduling was going through an outside office or there was simply no communication going on, I finally resorted to actually calling.

The first time? Okay, only a couple days’ notice.

The second time? Two weeks’ notice.

The third time? One week’s notice. This most recent time when I inquired about a specific day where I knew that I would be off work and available the entire day, I was informed “She’s entirely booked except for “same day” appointments.” But, now here’s the catch, they couldn’t go ahead and schedule “same day” because, well, it wasn’t the same day.

WTF?

So, an established patient with known chronic health issues has to wait because your system prefers to service individuals with faux acuity who, in actuality, simply haven’t planned their lives very well? When I mentioned a couple of my issues, one of which I knew would qualify as acute, I was informed I could be seen for the “acute” issues but the preventative ones would need a different appointment.

I’m sorry Community, but that’s just plain fucking stupid.

If you are more attached to the rules of your structure than actually serving your patients, then you don’t deserve to call yourself a healthcare network because, quite simply, you don’t really care. It is 100% unacceptable that I was put off in this situation. I realize that my physician has become more established and is scheduled out farther than in the early days, but please don’t pretend that you are providing “convenient access” when in truth it appears that only your convenience matters.

Here’s where you have a chance to truly put the “care” back in healthcare and to truly prove yourselves to be a network that cares about the individuals you serve more than the structure that you’ve built.

Make it happen. Yep, that’s right. It’s that simple. I realize that there will always be exceptions to the ability to “make it happen,” but under no circumstances should it take multiple months for an established patient with known serious health issues to make an appointment with a physician when you’re sitting around spouting about “same day” appointments. There are those of us who live in the real world and can’t just drop everything “same day” because it fits better with your screwed up system. There are those of us who can’t just leave work whenever we want because we have obligations and commitments and because we take our jobs seriously. So, when we call you a few days or a week or two weeks in advance and give you an entire day when we really need to get in then it’s up to you, if you’re a responsible provider, to actually make it happen.

It’s truly that simple. “Same Day” is meaningless marketing crap and destined to fail. You want to prove that you’re a system that truly meets an individual’s needs? Listen to the individual and adapt your system to the needs of the individual.

That’s healthcare and that’s service.

Otherwise, you might as well give up your non-profit status because you clearly care more about the almighty dollar than you do the people you serve who, by the way, are the source of those almighty dollars.

I have to be honest and say that I’ve been looking around at other networks and other providers. I’ve been looking around, but the truth is I don’t want to look around. I like my physician. She’s taken the time to get to know me and, maybe even more importantly, I believe she actually cares.

But, the simple truth is that as an adult with serious health issues I need for those who are providing my healthcare to truly be accessible when it comes to meeting my needs. What’s it going to take? Does your computer system need to better identify your most vulnerable clients? Do you need to tweak the way your network communicates? Do I need to do something or say something differently?

Now is the time for you to live into that very first core value that you list on your website – “Patients first.” I need for you to live into that value with everything you have. I need for you to make sure that this “structure” you’ve built and designed to improve the patient experience doesn’t dominate the patient experience. I need for you, more than anything, to make sure that you’re putting the care into healthcare.

The Gimp Rant #56 – Life at 3-4 Miles Per Hour

I’ve always been fond of saying “I’m not an athlete. I’m an activist who simply chooses something athletic as part of how I choose to make a difference in the world.”

Maybe I’m wrong. Maybe I am an athlete. I’m not sure there’s really one way to define what it means to be athletic, but having just returned home from my 25th Anniversary Tenderness Tour after 13 days traveling the hiking and biking trails of Northern Indiana I find myself a lot more willing to give myself credit for pushing beyond the realm of reason.

Long after an age when many professional athletes have retired and are sitting themselves in the announcer’s booth, I still find a reason at least once a year to drag my butt out on the road trying to make a difference in the world in ways that are big and small.

This essay isn’t about the Tenderness Tour. This essay isn’t about making a difference in the world. This essay is about what it means to slow down enough that one can experience the richness of life in all its glory and wonder and sorrow and pain and everything else there is to experience.

I suppose I’ve never considered myself an athlete because I’ve never really been able to wheel myself quickly. If you’ve ever participated in a 5k, 10k, or a mini-marathon or anything like that, then you’ve likely seen wheelchair athletes with their souped up chairs starting at the front of the pack.

I’m not one of them.

I don’t have a souped up chair. I have an ordinary, everyday wheelchair that really isn’t made for traveling the roads of Indiana or anywhere else for that matter. Before I ended up in a wheelchair 20+ years after living with spina bifida, I recorded the official slowest time ever recorded for the 500 Festival Mini-Marathon. It’s no coincidence that the very next year the event had a time limit.

I guess that means I’m a history maker in all the wrong ways.

I’ve never wheeled the 500 Festival Mini-Marathon precisely because I’m pretty sure I still couldn’t make their time limit even now that I’m on wheels.

I’m not fast. I’m not the best. I don’t win races and I don’t set records. I’d have never qualified for the Paralympics.

You see, I like life at 3-4 miles per hour.

Don’t get me wrong. I enjoy being impressive. It’s occasionally nice to show off or have someone be impressed by my wheeling and my physical endurance, but I’m at my happiest when I’m wheeling the hiking trails, the biking trails, the county roads, and the side roads at 3-4 miles per hour.

I love moving forward, but I love moving forward at a pace that allows me to commune with people and nature and my physical being. I love being able to look, really look, at everything around me and I love being able to listen to the sounds of the world and immerse myself in the scents of the universal aura.

I am at my happiest and I am at my most peaceful when I live my life at 3-4 miles per hour.

I am at my best as a human being when I focus less on the doing and more on the actual being.

I returned from this 25th Anniversary Tenderness Tour a changed human being. While this isn’t exactly unusual given my fondness for life on the road, this year was different and it was truly life altering.

This year, I returned from the Tenderness Tour feeling much like I did after that very first tour in 1989 and determined that my life had gotten too busy and too structured and too distracting from that which I’m supposed to be living out.

I came home realizing that every fiber of my being needed to live life at 3-4 miles per hour. I came home realizing that I had bought into the concept of upward mobility, status, structures, money, and distraction.

I came home realizing that in my effort to prove my independence and my ability, I had instead created an isolated and inauthentic world.

I came home realizing that in my effort to prove myself able and worthy, I had immersed myself in activities and relationships that weren’t feeding my soul and were in many ways abusing it.

I came home realizing that my life had drifted away from the things that mean the most to me and drifted toward distractions and disconnections and distance.

There’s something about the Tenderness Tour that, for me, represents everything that I want my life to be. I think the problem is that once I return from life on the road, from life at 3-4 miles per hour, that I return to a world where it seems like everything is designed to speed things up. In 2013, when I toured in Southern Illinois, I caught a glimpse of what life might be like if my circle of life or support circle or friends or whatever you want to call it, knew everything about me and not only loved me anyway but enfolded me into their nest.

Because, I’ve come to believe that we all need a nest and that need never goes away.

This year, when I began planning for a 13-day, nearly 200-mile trip across Northern Indiana, I also began envisioning a circle of life, a Tenderness Team, that would represent both the practical/logistical needs of life and the road but also a nesting of sorts into a mutually responsive circle that was safe, nurturing, caring, and celebrating.

For the most part, I succeeded and to feel this while living at 3-4 miles is both awe-inspiring and a little bit frightening. At 3-4 miles per hour, you are truly with another human being in a way that is honest and vulnerable and innocent and freeing.

The weird thing to me was that as I began constructing this year’s team, I found myself surprised by those who were attracted to the idea and surprised by those who were not. I was, in fact, awed by some of those who embraced the Tenderness Tour in ways I’d never before experienced and, as well, I found myself saddened by those who pulled away.

I suppose I didn’t live into quite as fully as I’d originally planned. In 2013, I was surrounded by nurses and CNA’s who practically demanded to know the details of my disability and knew when I was shamefully hiding. This year, I sort of hemmed and hawed my way around delicate subjects and, for the most part, took baby steps toward self-revelation and authenticity.

But, I was there and they were there and that is life at 3-4 miles per hour.

At 3-4 miles per hour, we talked. We listened. We sat. We got lost. We got found. We made a difference in ways big and small. We got where we were going, but didn’t spend a lot of time worrying about how or when.

We experienced each other’s strengths and weaknesses and, at least I believe, realized that everything that goes into comprising who we are is pretty damn cool.

Even though I may not have lived into that comfort of self-revelation, at 3-4 miles you learn things about me that my ordinarily busy world allows me to hide behind masks. You learn my social insecurities and my physical quirks. You learn how my disability impacts my daily life and, at least on some level, you learn how I try to cope with that in ways that are healthy and could use some changing.

It was weird to have a disability be on display yet to not be disabled by it.

I came home realizing that, much like I felt after that first Tenderness Tour, my life needed to change. I need to live my life at 3-4 miles per hour and I need people like these in my life, not so much because of function, but because they are just this source of endless joy and love and acceptance and my being able to live into who I really am.

I came home realizing that the activities and people and structures and organizations that don’t support my life at 3-4 miles per hour need to go and, in fact, I’ve already started acting on this realization in ways big and small. It’s not easy. In fact, in some ways it’s remarkably complicated yet it is absolutely necessary.

I began to realize that this Tenderness Tour I’ve been doing for 25 years isn’t just about activism or breaking cycles or raising money, but it’s about creating a nesting collective of some of the kindest, most creative, funniest, and most extraordinary people I’ve ever met and actually figuring out how to fully live into that with authenticity and honesty and commitment.

So, here I am. I’m back. Yet, I’m really back. Oh sure, I came back and rested a day then went right back to work. It was different and it was slower and it was more intentioned. I came back realizing, sometimes painfully, those areas of my life that needed to be set aside and those areas of my life that could simply be gently slowed down. I came back realizing those relationships that were healthy and those relationships that were unhealthy. I came home realizing that life, regardless of one’s circumstances or job or family demands or stressors, truly can be lived at 3-4 miles per hour.

And so it begins…

The Gimp Rant #55 – The Socially Awkward Gimp

For as long as I can remember, I have been socially awkward.

There are some who don’t believe me. There are some who’ve labeled it “Social Anxiety Disorder.” There are some who say I’m just an introvert. There are others who just consider me painfully shy. Of course, there are those who simply acknowledge that years of sexual abuse and other traumatic events have left me with more than a few walls that one must climb in an effort to gain entry into my life.

Whatever. It is what it is. I am socially awkward. Don’t get me wrong. I’m not antisocial. I love people and, at least for the most part, they love me back.

I am, for the most part, a liked and even loved human being who can function in crowds, work on teams, facilitate groups, be a productive member of clubs, attend gatherings, and form healthy friendships and relationships.

I suppose it started way back in third grade when I left the safety and security of my school that was specifically designed for children with disabilities and was mainstreamed into a public school setting that was fully prepared to honor the mainstreaming laws but wasn’t quite sure how to go about it.

They were awkward. I was awkward. We were awkward.

I was this friendly but shy third grader with spina bifida and all the things that seem to come with it ranging from physical ailments that kept me in the nurse’s office often to learning disabilities that made the classroom transition more than a little challenging. It seemed like I did everything differently from everyone else, and it seemed like everyone else felt an obligation to point it out.

Mike was one of the cool kids in third grade, though it still feels weird to me to think about “cool” being a concept even in the third grade. When he noticed that I held my spoon funny while eating my favored Spaghettios, he felt obligated to make fun of it.

I don’t think I was aware of being hurt by his comments, but I’ve long been aware that from that day forward I started to change. I think that I suddenly realized that I was different from everyone else and, for the first time in my life, I think I realized that not everyone was okay with these differences.

As my schooling went on, it became apparent that I wasn’t attractive enough or even close to rich enough to be with the really cool kids. I wasn’t smart enough to be a brain. I certainly wasn’t athletic. I wasn’t a stoner. Heck, I wasn’t even nerdy enough to hang with the geeks or disabled enough to be in special education.

I really didn’t have a place other than with a few of the outsiders who basically thought our entire school system was one series of cliques and they refused to be a part of it.

I had a small circle of friends and, for the most part, I was happy.

But, I was different and I knew it.

I really only had one consistent friend in high school and it wasn’t because my mother, on top of everything else I had to deal with, opted to raise me as a Jehovah’s Witness just to cement my outsider status. I’d had one “sleepover” in junior high and that led to my sexual abuse so I wasn’t exactly anxious to spend the night with any other friends. I never went to parties. I never really socialized. Oh sure, I did my activities – speech team, drama, journalism, and others.

But, I kept to myself.

In addition to all the time I spent in the hospital due to the numerous surgeries I required, I found that my body was just unpredictable enough that it seemed like humiliation was always just right around the corner. I had certain procedures that were required on a regular basis, procedures that were difficult to do alone and would require the help of either a parent or someone else willing to deal with stuff that most of the other folks didn’t bring to the table.

By the time I graduated high school, I began to realize that a good amount of the social skills that I did have were based almost solely upon my existence as a human being with a disability. I suddenly realized that almost every aspect of how I presented in human relationships had been formed out of my body and all the things it needed to survive.

“Normal” relationships didn’t so much terrify me as they simply left me completely clueless. I had no idea how to relate to people in ways that didn’t involve my disability.

Initially, I went to college briefly and figured out that physically I couldn’t quite handle it.

Then, I went to work and failed miserably because I had no concept of self-care and was no longer surrounded by the folks who would reinforce it for me and help me with it.

Then, life began to spiral downward due to one traumatic event after another and instead of relating through disability I began to form relationships, incredibly unhealthy ones,  through trauma.

It wasn’t long before I’d burned the majority of my friends out and finally, after many failures, began to identify that if I had any hope for a normal life I needed to improve my independent living skills and redefine what it meant to give and receive love.

It took years, but over time I began to succeed. While I’d been placed on Social Security Disability right after high school out of the expectation that I’d never really work full-time, I found my life changing after I started the first Tenderness Tour event in my mid 20′s and came home with the realization that, as Stuart Smalley would say,  “I’m good enough. I’m smart enough…and doggone it, people like me.”

Who knew?

Here’s the problem. On the surface, I transcended all the dramas and the traumas and the relationships borne out of my needs and weaknesses, but the truth may really be that I just swung that pendulum to the other side and became so fiercely independent that I built a life devoid of certain aspects of who I am that are important.

I do have a disability, after all. It may drive me crazy. It may exhaust me. It may humiliate me. It may require the presence of other people, but I do have it and disowning it didn’t make it go away. For quite a few years, though, I found myself able to survive and thrive through my will to live, my willingness to work, and a small handful of well placed relationships with people who persevered with a fierce dedication long enough to find out the truth of who I am and they possessed a willingness to deal with it all anyway.

My body, despite its many limitations, allowed me to live a decent quality of life even if I couldn’t always get my body to do what I wanted it to do and even if handling even the very basics of life occasionally became an exhausting endeavor. I had friends, peers, and close acquaintances with whom I’d built a life even if they didn’t always fully realize the truth of my existence.

Then, about five years ago everything began to change. Suddenly, this body I’d been able to successfully manage for so long began acting a little more unpredictably and that small handful of people who’d always been present through these challenges began to move, pass away, or otherwise leave my life.

Suddenly, as my body was changing, I realized that my body was begging for interdependence and I was clinging desperately to independence. I’d built a successful, happy life based upon the strength of my being and my ability to achieve and suddenly I became terrified that it might all slip away.

Suddenly, this socially awkward gimp began to realize that at least some of those friendships and relationships were merely protective buffers I put in place. Oh sure, we were actually friends but there was an undeniable truth that I’d surrounded myself with people who were workaholics, like me, or who lived far away, had extensive commitments, or who were otherwise obligated.

In other words, they were “safe” because they didn’t challenge all the walls that I’d built in my life.

I was suddenly faced with a heart that was tired of isolation, a body that truly needed community, traumatic memories that refused to allow vulnerability, and old tapes that kept playing and reinforcing that I would lose everything I’d worked so hard for if I wavered from my current path.

It was exhausting.

I began pushing people away, because I didn’t know how to explain the changes and I didn’t know how to deal with the fact that my body was changing in ways I found exhausting and stressful and occasionally humiliating.

It wasn’t that my friendships weren’t honest or authentic or real. They were. In fact, I’ve always been rather fortunate to have a small circle of rather extraordinary friends. It wasn’t that my friends didn’t realize I had a disablity … After all, it’s not exactly something I can hide. It’s simply that I had pushed the physical aspect of who I was to the background and believed that to be  the best way to foster healthy relationships.

I was wrong.

So, I began fumbling towards a new way of being in relationship that balanced strength with vulnerability, pride with humility, independence with dependence, and the list goes on. I had a couple people in my life who understood it, though chief among these was longtime friend Melissa who would eventually take her own life a couple years ago and leave me even more dumbfounded by how to manage my daily life without one of my key supports in it.

I began experimenting by sharing bits and pieces of the truth of my daily life. I began balancing the guy I like to call Bravado Gimp with the socially awkward gimp that I’d hoped I’d locked away. I began allowing both to come out and play realizing that on occasion humiliation may result. I began redefining boundaries and I began encouraging the friendships that I did have to become stronger and more honest.

I failed. I still fail. A lot.

I’ve been thinking of all these things because just this past week I found myself invited to join one of my high school peers with her son as we attended a local concert by John Hiatt, my longtime favorite artist whom I’d never seen live. Truthfully, I thought she was kidding and when it came down to it I thought the invitation would remain just that – an invitation.

Nope. She was serious.

I remember telling another friend of mine a few months back that I wished I could be one of her “fun” friends, but I’m simply not. I can be a good friend, an inspiring friend, a purposeful friend, or a meaningful friend.

But, I’ve just never been that much fun. Heck, I’m always too worried about “stuff” to relax into being fun.

I also realize, even as I’m writing this, that I’m grossly exaggerating the whole “not fun” thing. I have fun with lots of my friends and, quite honestly, I have lots of friends who’d rather have a deep, meaningful friendship anyway.

But, I’m getting myself worked up so I’m going with it.

So, I said “yes” to this friend and I went to the concert.

It was fun. It was very cool. It was also meaningful. It was one of those very quiet, very affirming lessons  that I can be both – I can have my disability and live into an authentic presentation of who I am and I can also be part of a mutually satisfying friendship.

I know. I know. This sounds obvious. I suppose it is obvious.

I just consider it amazing. I consider it amazing that there are people who embrace the fullness of who I am in ways big and small.

I consider it amazing that I can be both strong and vulnerable.

I consider it amazing that I can be both independent and interdependent.

I consider it amazing that I can have my disability without masks.

I consider it amazing that everything I am, when it comes down to it, is good enough, smart enough, strong enough, fun enough, and loving enough.

This doesn’t mean that I don’t get insecure. This doesn’t mean that I don’t struggle with a body that can be unpredictable and that still leaves me wondering about my purpose and value and ability to build truly mutual friendships and relationships. This doesn’t mean that I don’t approach social occasions with an absolute fear that my body will go bonkers and I’ll end up dying of embarrassment in a fetal position on the bathroom floor.

These things have happened before. I’m pretty sure they’ll happen again.

What this does mean is that slowly but surely I’m discovering a willingness to keep showing up anyway. I’m discovering an ability to figure out who in my life is truly comfortable with being a part of THAT part of my life that is so essential in maintaining my physical wellness and emotional sanity. I’m figuring out who can deal with disability and who is more comfortable in other areas of my life. I’m figuring out who wants inside that part of my life and who is meant for other areas of my life. I’m figuring out friendship and intimacy and relationship means different things and gets expressed in different ways.

It’s all good. It’s all important.

I’m finally figuring out that all those “secrets” I’ve kept locked up inside don’t always have to be secrets and that some friendships, in fact, are stronger if they’re not.

In short, I think I’m finally discovering that this ever learning gimp isn’t so awkward after all.

 

Gimp Rant #54 – Live Like You Were Dying

I never expected to get older.

Have you heard that Tim McGraw song “Live Like You Were Dying?”

That’s my life. That has always been my life. As a person born in the 1960′s with spina bifida, my expectations were low and I have constantly surpassed them.

I should have died at birth, but I didn’t.

I should have died in my infancy, but I didn’t.

The doctors kept saying that I should have died before the age of 10, then my teens, then my 20′s…

Then, I stopped going to doctors because I was tired of hearing it.

I was supposed to have an intellectual disability. While I do have a diagnosed learning disability, I’m a college graduate who graduated Summa Cum Laude.

I was supposed to never walk, but I walked with crutches for the first 20+ years of my life.

I was supposed to never be independent, but I moved out of my parents’ home in my late teens and have never gone back.

I work full-time. I own my home. I drive. I’ve lived like I was dying my entire life and, in the process, I’ve accomplished some rather amazing things.

I’ve lived. I have absolutely fully lived.

I never, quite honestly, expected to get older.

I may have lived like I was dying, but I never lived like I might experience what it is like to get older.

I never worried about retirement, because I’ve never planned to retire.

I lived my life having reasonably satisfying, short-term relationships because my heart and my mind simply refused to think about anything long-term. I figured if, by chance, I would live anything resembling “long-term” I’d likely be stuck inside a body that required more care than a loved one should be expected to provide. So, if a relationship started to go long-term I was, quite simply, out of there.

Ouch. That hurts.

I never thought that I’d be facing the prospect of watching family members die. After all, I was by far the least healthy person in my family and I figured my parents and my brother would long out live me.

While I work in a field where I deal with individuals who have disabilities whose lives are suddenly thrown into disarray when their relatives pass away or their support systems fade, I’ve never pondered that fact for myself.

I’ve always assumed my independence, because I’ve always found a way to be independent even if it meant compromising my care or my needs or my hopes or my dreams.

As I wrote in my last Gimp Rant about the suicide of my friend Melissa, it was after her death that I began coming more face-to-face with my own mortality and my own disability because overnight one of my key emotional and physical supports was gone. Suddenly, life got harder and I had nowhere to turn.

Suddenly, for the first time in years I felt disabled. I felt older.

Quite honestly, I felt afraid.

Then, IT happened.

Those of you who’ve been reading my writing for quite awhile or who’ve read my book “The Hallelujah Life” know that I’ve always had a complicated relationship with my parents.

I love them. They love me. While my childhood, especially after my teens, was stressful we’ve worked hard over the years to heal our relationship and my parents have tried to parent the best way they’ve known how.

After I became a homeowner, this became for my mother what amounted to an overnight visit every month or two where we would have mother/son time while she would also do things that she knew I had difficulty doing but that I didn’t necessarily like to acknowledge.

Housecleaning. Laundry. Maybe yard work. Maybe house decorating.

These were simple things. They weren’t a big deal. There were times that life would get in the way for both of us, but we tried to make this a regular happening. I’ve always believed it was far more about healing the relationship than it was about the tasks themselves.

Then, IT happened.

Several months ago, my 68-year-old mother was hospitalized after having gone into a pattern of being unable to eat. She’d been unable to visit for a few months and was down to working part-time at the local county hospital. She was struggling physically, but she was as optimistic as ever. She always bounced back.

This time was different.

During a routine procedure, she went into cardiac arrest and coded. We lost her, then we got her back or at least we hoped we were getting back. First, there were the days on the ventilator where we wondered if she would survive.

She survived.

Then, she was transferred to a specialty hospital for recovery.

She’d experienced a severe brain injury, but she recovered.

Then, she went to rehab. The rehab she was sent to ended up being far too intense and she experienced a traumatic setback and went back on the ventilator.

Then, she recovered again.

Then, she went to a rehab more aimed at older adults.

She blossomed.

After over 7 months in hospitals, she went home to a home that had been modified to meet her needs with wheelchair ramps in place and bathroom modifications.

I had to chuckle as someone who grew up with a disability living in a two-story apartment with my parents and NO modifications whatsoever.

This was, I could safely say, the most challenging seven months of my life partly because I was dealing with the potential loss of my mother, partly because of also having to come face-to-face with our complicated relationship, and partly because I was dealing with what it means to have a disability, get older, and watch those people you’ve always relied on slip away.

I don’t in anyway want to idealize the situation. The truth is that my relationship with my parents has been complicated enough that in most ways the “parent” piece of the relationship faded years ago. Yet, there were those times when simple efforts were a huge support.

As I had dealt with the loss of physical supports when Melissa died, I now was dealing with another piece of that support system being pulled away. At the same time I was working full-time, dealing with my disability, and handling all my outside interests I was also now doing daily, or at least every other day, visits to my mother in whatever facility she was in at that moment.

While I’ve always been a bit of a loner and pretty much all of my friends are used to not hearing from me for days, weeks or months, suddenly that silence was deafening.

I didn’t fall apart or anything. I honored my obligations and, for the most part, I honored them well.

Inside? My spirit was broken and my body was exhausted.

Suddenly, this carefully created world based upon this idea of “live like you were dying” was more painful than I’d ever imagined an existence could be. Everything became overwhelming from the basics of self-care to daily tasks to going anywhere and doing anything.

I was grieving, I think, but I still don’t really know what I was grieving. I had one friend who said “Would you like me to come with you to the hospital?”

I didn’t know how to answer that. In my mind, everything was so jumbled and chaotic that I couldn’t possibly say “yes.” I suppose what I really wanted to hear was “I would like to come with you to the hospital.”

I never heard those words and, once again, the silence became deafening and enveloping and overwhelming.

It wasn’t just happening at the hospital. I began to wear down so seriously that every aspect of my life became impacted and suddenly things that had always been easy for me became impossible tasks.

I suffered. My home suffered. My car suffered. While my work didn’t suffer, my life at work suffered.

Suddenly, I realized I didn’t want to live like I was dying anymore.

I just wanted to live. I just wanted to figure out what out what it means to live more fully into a life while acknowledging that bad stuff happens and life is incredibly hard sometimes. I wanted to stop being so consumed with “doing” as much as I can in life before I die that I forget to live and love and laugh and surround myself with people who know me, understand me, and aren’t afraid of the truth of my existence through the joys and the sorrows.

I wanted to live a life that would never allow me to feel this alone again. I wanted to live a life where if my home is falling apart, I can say it. I wanted to live a life where I’m not so afraid of caregiving that I allow myself to fall into physical disarray and illness.

I suppose I wanted to figure out what it means to live a life where love is stronger than grief and stronger than disability and stronger than anything we can experience in life.

There’s simply too much dying in “live like you were dying” and not enough truly authentic living.

Two weeks ago, my mother went home to a husband who’d prepared the home for this new phase in their nearly 50 year marriage. This is not, I believe, what he expected his life to be after retirement but, much to nearly everyone’s surprise, he’s risen to the challenge and he’s realized that having her home makes his life more complete.

I’ve wondered if it’s not a lot like those early years in my life when so many were telling my parents that perhaps they should simply let me go because it was “God’s will.”

Live like you were dying?

Nah, no thanks.

I think from here on out I’m going to live like love is all that matters.

The Gimp Rant #53 – Remembering Melissa

It has been three years, I believe, since my life changed forever.

I am bothered by the fact that I don’t remember with absolute certainty how long it has been since Melissa, one of my very best friends and quite likely the first person whom I absolutely trusted loved me, took her own life while I was away attending my church’s annual conference.

Tomorrow, Mother’s Day, would have also been her birthday. We would have celebrated. We would have laughed. We would have contemplated, as we did every year on our birthdays, the miracle that we had survived yet another year despite having endured life events that would have caused so many others to give up.

I remember the first time I could identify feeling “loved.” I was sitting backstage at IUPUI’s University Theater in costume for my role as Ralph Werner, a dancing/singing tie salesman, in the university’s adaptation of Studs Terkel’s “Working.” I’d fallen during dress rehearsal and received an injury that would eventually claim my feet, but I was determined in that moment to still somehow carry on.

The show must go on, you know?

Melissa was the stage manager. Simultaneously, she became a bit of a mother hen. She was protective yet empowering, nurturing yet infinitely freeing. I finished the show and, for the most part, I think no one had a clue how much I was really suffering physically.

Melissa became a steady presence in my life. She never really revealed the deep traumas of her past because, quite honestly, she was too busy trying to understand mine. I was just on the cusp of acknowledging my history of sexual abuse, and my days and nights were consumed by flashbacks, self-abuse, drug use, and other horrible choices.

I remember at one point being absolutely convinced that suicide was the only way out. Melissa, at the time an intern at Riley Hospital’s Child Psychiatry Clinic, could sense that I was at a new level of despair and invited me to lunch that afternoon. She knew without my telling her that I had a gun with me.

She was right.

She asked for it. I was a little pissed … it was an expensive gun, after all.

But, I relented.

I don’t know if she saved my life that day, but I do know that she stopped me from shooting myself.

She was one of the few human beings who endured my years of suicidal ideation and gestures, self-abuse, substance issues, and raging symptoms of post-traumatic stress disorder. I tried to respect her boundaries, but as someone who’d seldom if ever experienced what I would one day identify as tenderness there were times I couldn’t help myself but cling to her.

To be sure, she was not the only friend who endured these times and came out the other side with me. Yet, there was simply no denying that our friendship was something special. I think, when it came down to it, it was simply the fact that our life paths were very similar and yet we were both fumbling our ways through our healing journeys and determined to break the cycle of abuse and violence.

Eventually, Melissa would leave with her then husband and head off to graduate school in Nashville, Tennessee. While I grieved her physical loss, I knew that it was the next phase in her journey of breaking the cycle and I celebrated her successes.

Suddenly, she was gone.

It would be years later that I would accidentally stumble across Melissa once again. I had FINALLY broken out of my self-abusive cycles, established stability, finished my college degree, and was working in, of all things, crisis intervention. She had returned from Nashville after years of living in a downward spiral and had started rebuilding her own life after finally, after years of trying to heal everyone else, having to come face-to-face with her own traumatic past.

We reconnected well, though I will confess that the intensity of her past and of her journey frightened me a bit as I had comfortably put away so many events in my own treasure chest of trials and tribulations.

That kind of sounds like a bad B-movie, doesn’t it?

While I was doing well before Melissa came back into my life, I must confess that I blossomed upon her return. I’ve always been blessed with good friends, but Melissa’s friendship has always sort of had an elite status. There are those people with whom there simply are no masks to be worn. They simply aren’t necessary.

It is rare, but when it happens it is extraordinary. With Melissa, I could be successful. I could be happy. I could be a survivor. I could be weak. I could have my disability.

I could show Melissa every aspect of my world and know that I would be loved and accepted. Melissa saw the strengths and the successes and the victories and, yes, I saw hers. We celebrated the many ways in which we had overcome our pasts.

Yet, she also knew the truth of my existence despite my resistance to show it. She practically forced her way into my home, one of my greatest sources of challenge and shame, and simply maintained a loving and helpful presence. I have no idea here if she was truly comfortable here, but if not she never let me see the discomfort.

One day, after we’d both had a tad too much to drink, she was helping me home and learned more than I’d ever planned to reveal about my disability and my body and my needs and my willingness to suffer.

“I don’t want to be seen as special,” I used to say.

“Trust me, you’re nothing special,” she’d say right back.

We’d laugh. She became the kind of person you simply can’t make go away. She was comfortable with and celebrated every aspect of who I am. She didn’t care if that meant she was occasionally helping me clean or dress or shower or if she happened to show up unannounced on a day when my house looked and smelled like my entire being had exploded in a fireball of guts and glory.

Sorry, it feels dramatic to me.

Sometimes, she wouldn’t even ask. She would just help when she knew help was needed. We shared little victories, we shared hobbies, we shared holidays, and we shared those dark moments in the healing journey that you just can’t explain to someone who has never been there.

Then, IT happened.

I came home from my church’s annual conference all prepared for what would be gall bladder removal the next day. Melissa was going to help me out afterwards because, as we’ve established, I’m fairly guarded about the whole “help” thing. I didn’t hear from her.

I didn’t hear from her. I didn’t call her.

I’ve asked myself a million times “Why the fuck didn’t I call her?”

I had my surgery and was fortunate to have another friend jump in to provide needed assistance and, yes, we spent the next few days fumbling through what “help” meant in my life. About halfway through my week of recovery, I received a call from Melissa’s young adult daughter, a delightful young woman who has had to bear far more crap than a child or young adult should bear, informing me that Melissa had died.

Instinctively, I knew. I knew Melissa had not simply “died,” though I did know she’d had some recent health issues. Instinctively, I knew that this was a choice she’d made and this time she’d chosen not to reach out. She’d only recently divorced her second husband and, at least in my opinion, she’d intentionally chosen this time when I would be out of town.

Instead, it was another friend who would end up finding her in her home. In the days and weeks that followed, I wrestled with “the urge” and contemplated joining her.

As I listened to the grief of those I knew closest to her, I knew that I didn’t want to have people talking like that about me. I didn’t want my legacy to be abuse or self-abuse or suicide. As many years as Melissa had spent overcoming her past and in as many ways as she’d broken the cycle, this one choice sealed her legacy.

This was the day that love didn’t win. This was the day that the years of abuse and violence she’d endured became more powerful than the love she had for others and the love we had for her.

I have spent the years, I still don’t remember if it’s two or three, fumbling my way towards normalcy. I’ve become more introverted and less social. I’ve become more convinced that, perhaps, if I’d been less of a physical burden that maybe, just maybe…

I know it’s silly, but I can’t stop thinking it.

There’s another horrible thought that I can’t erase no matter how much I know I should. I had told her that I needed space…I needed this time at annual conference to focus on the tasks at hand.

I needed space? What the fuck does that even mean?

I know what it means or, at least, I know what it means in my mind. It means that when she needed me most, Melissa didn’t call.

Guilt doesn’t begin to describe the feeling.

I miss her. I miss the honesty. I miss the quirks. I miss the conversations. I miss the vulnerability. I miss the safety. I miss the help. I miss the connection. I miss being a burden and I miss being burdened. I miss sharing the darkest moments of our lives and I miss the almost childlike wonder we both experienced when unexpected flickers of light and happiness would filter through anyway. I miss the ways in which we both found to love and accept others because we knew what it was like to be fiercely and brutally rejected.

I miss the fumbling.

I miss the willingness to hear anything and see anything and to experience anything. I miss the willingness to show up and show up again even in the midst of absolute chaos because, after all, what’s a little more chaos?

I miss the successes and I miss the failures.

Have you ever heard the phrase “fight like hell?” With Melissa, it was more like “love like hell” and I miss it.

I miss the myriad of ways in which we proved day after day that love was strong than hate, peace was more powerful than conflict, and that the abusive cycle could be broken.

These words are not about guilt or suicide or the abusive cycle, but they are I suppose a reminder of sorts that we need to hold on tight to one another and love like hell because as much as they say “it gets better” the simple truth is that sometimes it doesn’t.

And into that better truth we must place love.

It doesn’t mean that love will always win, but it does mean that we don’t have a chance in hell of winning without it.

We’ve got to find a way to love one another even when loving one another doesn’t make sense. We have to find a way to love one another through our broken bodies and broken hearts, broken minds and broken homes. We’ve got to show up through our discomfort and let go of any notion that love is always convenient and pretty and safe and comfortable.

It’s not. We’ve got to love anyway.

I know that Melissa believed in something better than she was living, but she just couldn’t quite figure out how to get there and in one irrevocable moment she made a different choice.

Now then, I’m left in some ways fumbling and in some ways more determined than ever to prove that love always wins even when it seems damn near impossible.

This isn’t about suicide or guilt or abuse or violence, but about remembering. It’s about choosing to remember the truth of love even when we can’t feel it. It’s about choosing to remember those in our lives who need us the most and refusing to let them go. It’s about loving relentlessly and praying to God that it’s enough.

“It gets better,” they say, but I say that’s only true if we’re willing to love like hell and love through hell and to truly surrender ourselves to everything that love can possibly mean.

It has been three years, I think, since one of my best friends went away and changed my life forever.

Slowly. I fumble towards once again believing that love always wins. That is how I want to remember Melissa.

 

The Gimp Rant # 52 – The Car Search Finally Ends

It was just over one month ago that I began intensifying what had been a couple months of casually looking out for the potential next vehicle. After four years of driving the vehicle from purgatory, a 2001 Chrysler Sebring purchased from Tom Roush Mazda/Lincoln/Mercury’s used lot in Westfield, Indiana, it had become abundantly clear that the car simply wasn’t going to live long past the early 2014 date in which I’d have it paid off.

I am now a couple months past having paid off the the Sebring, and while I’d love to stall for a few more months of freedom I far more value stability and after obtaining a pre-approval from my credit union began searching earnestly for potential vehicles.

I quickly learned a couple things – 1) The current car market is not friendly to drivers with disabilities and 2) With all the new techno gadgets on vehicles, much of the space I’d previously used for loading my wheelchair is now taken up by bells and whistles. In other words, I’ve had a heck of a time finding an appropriate vehicle.

Those of you who remember my search four years ago for an appropriate vehicle, a search that went much more quickly, likely already remember that I have a serious disdain for car sales and the high pressure game playing that seems to frequently accompany the experience. While I am typically not quick to anger or frustration, the car buying experience seems to bring out my edgiest and most frustrated side.

The good news is that I’ve had some fantastic experiences throughout this 1+ month long search even from dealers where I didn’t end up buying.

The best experiences? By far, they’ve included Enterprise Car Sales in Indianapolis, O’Brien Toyota-Scion on Shadeland Avenue in Indianapolis, Ed Martin Honda in Indianapolis, Andy Mohr Toyota in Avon, Indiana and Ray Skillman Kia-Mitsubishi on Shadeland in Indianapolis.

The worst experiences? Hare Chevrolet in Noblesville, Butler Kia on Keystone Avenue in Indianapolis, and Andy Mohr Ford in Plainfield to name a few.

There were other experiences that were sort of a mixed bag including Bob Rohrman’s Hyundai dealership on East Washington Street, Butler Hyundai, Champion Chrysler-Jeep-Plymouth, and others.

There were two dealerships that I swore off this time around – Tom Roush and Blossom Chevrolet. I’ve already acknowledged my frustrations with Roush over my last vehicle, but Blossom remains one of my least favorite auto dealers in Indianapolis based upon an interaction that was so incredibly negative I’ve steadfastly refused to return and, yes, I’m still telling everyone about it.

Let’s talk about some of the more challenging experiences. These include both pure and simple examples of poor customer service and, admittedly, some things that I just consider downright irritating.

For example, let’s talk about Hare Chevrolet. The last time I wrote about my car search, Hare Chevrolet was one of the first dealers to respond to my article. They regretted that I hadn’t given them a chance, so when it came time for this search they became one of my highest priorities to actually give a chance.

Hare Chevrolet may have been my most frustrating experience, though they were certainly not the most negative experience. Hare is a female-owned car dealership largely recognized in Central Indiana for its customer service and flexible attitudes. They have a strong community presence and a strong web-based presence. As someone who prefers to do a lot of my initial contacts by e-mail, I place a high value on a company’s web presence. In fact, a good majority of the negotiating on my last car was done by internet.

My initial contacting of Hare came after locating a car on their website that I found interesting. I filled out their little internet “contact me” form, a form I found irritating because it demanded a phone number, but I also requested e-mail contact. I specifically asked a couple of questions about the car including, quite basically, simply wanting to know if it was still available.

By mid-morning the next day, the first phone call arrived. Because I work in a busy cubicle, I could not answer it. The person on the line was polite and encouraged me to call back at my earliest convince. They didn’t answer any of my questions. THAT is irritating.

Not long after receiving the telephone call and voice mail, I received another e-mail follow-up confirming that they had, in fact, called me and I had, in fact, not answered the call. (Gee whiz. Thanks for that insight). I responded to the e-mail politely and thanked them for their contact and, again, I requested contact primarily by e-mail. I again asked the same questions.

By mid-afternoon, I received ANOTHER telephone call. This message was a little less polite. It again reminded me that she’d been trying to get in touch with me, but also again did not answer any of my questions.

While Noblesville isn’t exactly a long drive from my home in Indianapolis, it’s far enough that I’m not about to simply drive up to the car dealership on the offbeat chance the car may be available. So, I really needed my questions answered.

I didn’t respond to the late afternoon and, of course, had another one the next morning. This one was even a bit “shorter” in tone and was again followed by another e-mail.

So, I sent an abrupt e-mail myself  explaining that I understood she had been trying to reach me and that I’d been very clear I’d prefer to do my initial contacts by e-mail. I also stressed that in all the back-and-forth messages, she’d yet to answer any of my questions. This message happened on a Friday and it wasn’t until Tuesday that I received a response.

I did eventually get my responses and, as one might expect, by the time I got my answers the car I’d been asking about was gone. Needless to say, my frustration level was high and I merely stated I would continue watching their website and contact them should another car of interest show up.

If you’re going to have an internet department, Hare Chevrolet, then you should be comfortable doing business by e-mail and/or text interactions. This shouldn’t be a question or a maybe or a doubt. It should be a given. Yes, in all likelihood you will lose more business but you will also have access to even greater business. Unfortunately, by practically forcing the issue and never answering my questions your sales people began sounding like scripted Stepford sales people. I wasn’t impressed and it didn’t make me want to give you my business. So, I didn’t.

The issue at Butler Kia occurred while I was actually on the lot. First off, I got the “motion.” I despise the “motion.” It’s lazy. It’s presumptuous. It’s condescending. The motion is basically a “come here motion with the hand” as I was driving around the lot checking out cars. First off, if you’re a sales person you need to show some energy and initiative. The messages you’re sending when you send “the motion” is “I’m not going to meet you half-way” and “I’m not going to go the extra mile for you.” Is that really the message you want to send?

Because I did, in fact, have a question I decided to actually drive up to the sales person and ask them a simple question about the Kia brand. The salesperson answered this question, “Do you have any two-door Kias?,” with a vague “Yes,” but then acknowledged unconvincingly he couldn’t remember what they were. He invited me to come on in with him and he’d get the information.

“I’m really in a hurry right now.” After a few moments back and forth with him trying to convince me to come inside, he gave me a snarky “Well, if you’d have already come in you’d have had your answer already.”

Do you really think I’m going to spend thousands of dollars and be treated like shit? Nope, I informed him that he’d just blown a sale and I left. For the record, I ended up buying a Kia but I didn’t buy it from Butler Kia because your sales person sucked.

The issue at Andy Mohr Ford in Plainfield was much simpler and again involved internet contact. This contact was, for me, probably the least frustrating of what I would call the negative experiences. While the sales person essentially dropped the ball here, it felt like there was a genuine misunderstanding and, quite honestly, there remained the possibility that I’d give these folks a second chance. I contacted them through the instant messaging feature that I found on their website with questions regarding the Ford brand. After assuring me that there were a couple Ford models that would meet my needs, she also informed me that her office had been moved and her computer was being hooked up. This being Tuesday night, she said that I would have information on these models by Friday. I left open the possibility of coming in either Friday after work or on Saturday.

By Friday afternoon, I’d not yet received any information. I did, however, receive an e-mail requesting to confirm an appointment for the following day. I e-mailed back and explained that I’d not received any information and I wasn’t going to simply come in as it was a long drive for me and I wanted to make sure it would be worth it. I was concerned, because while she’d assured me that Ford had a two-door Fiesta I’d not seen a single one on their website.

The next day, Saturday, she again e-mailed me (I’d gotten away this time with not giving a phone number). I e-mailed her and again reminded her that I’d not received the information she was to send and I didn’t want to simply drive all the way to Plainfield.

“What information? I didn’t know you were waiting on information,” she replied.

Um, here’s a tip. If you have conversations with people, write them down. I’d already been made to wait from Tuesday night to Friday for what was a flimsy excuse. Since I know these instant messaging programs that are used, I know that conversations can be saved. There’s no legitimate reason for someone to “forget” that they promised to send me information. I simply informed her that I would be going elsewhere.

The mixed experiences?

At Bob Rohrman’s Hyundai dealership on Indy’s Eastside, I had a sales person take my name and telephone number along with my car preferences. He texted me the next day, which was promising since I’d requested that over calling, but then I never heard from him again. Did he assume I wasn’t really interested? Did he look at me and assume bad credit?I don’t know, but he blew a sale by never getting back with me. I call this a mixed review, because just a week before I ended up buying a car I returned to this location to check out the Hyundai Elantra 2-door couple and was treated well and had my questions answered. Ultimately, the car didn’t work but the sales person was helpful.

Butler Hyundai, yes I was exploring the Hyundai universe for a bit, was also a mixed bag. At the time, I was particularly interested in the Elantra and another vehicle I’d seen on their website. In posting this on social media, I discovered a friend who had a particularly positive interaction with one of their sales people while acknowledging the rest of the staff can be a bit high pressure. As it was very early morning when I made this contact, I tried to send an e-mail but the Butler website could use some upkeep. So, I sent a message their their “contact me” option and stated I’d like to specifically talk to this one sales person. I received the usual automated response, but responded anyway and stated I’d like to have the one sales person contact me. Fortunately, my friend happens to know that I prefer e-mail and rather despise phones. She’d already called him and requested he contact me by e-mail.

He did. Bravo. He was also quite helpful even if the end result was that Butler didn’t have what I needed right now. If this response was based solely upon him, it would be positive. Unfortunately, technology seems to get in the way of Butler, a rather large auto group with multiple dealerships, and I subsequently received automatic e-mails each day for five days. Each e-mail was more persistent and the final e-mail even said “We know we’re being persistent.” I e-mailed back and advised Butler that they should put down their technology toys and actually communicate with their employees and customers because I had, in fact, already talked to the sales person and I found their automatic responses rude. It made me feel like I wasn’t much more than a number to them, because they clearly weren’t communicating.

I also had a very mixed reaction to my encounter with Champion Chrysler-Jeep-Plymouth, where a sales person answered my response and did answer my questions about the vehicle. However, they also clearly contradicted an advertised employee discount for my particular employer. While the sales person stated it wasn’t good on used cars, our flyer very clearly says that it is good on used cars. While the employee discount programs do typically have a primary contact person, in a situation like this one it seems common sense that if you don’t actually know the answer you find out.

I would be remiss if I didn’t acknowledge some of the truly impressive experiences -

I didn’t end up buying from Enterprise Car Sales, an organization that works with my credit union, but was treated with tremendous interest and respect by Justin. Unfortunately, this dealership is simply a tad too small and just never had the kind of vehicle I needed. However, Justin was persistent without being obnoxious and understanding about the disability. I truly wanted to buy from this organization, but the right car just never came along.

Zac at Ed Martin Honda was equally impressive. He, in fact, came incredibly close to selling me a car and was persistent in trying to work with me. Sadly, it would end up that he’d show me a 2013 Kia Forte Koup and I would end up buying a 2012 Kia Forte Koup and, yes, they are slightly different. Zac and the entire crew at Ed Martin did a terrific job of problem-solving. It was at Ed Martin where I tried several vehicles, all of which either didn’t work or were “close.” Overall, it was a good experience and I would definitely return.

On the same day that I bought my car, I visited Patrick at O’Brien Toyota-Scion. I was particularly interested in one vehicle and I was just a little irritated to arrive and learn the vehicle was on hold (but its presence had been confirmed just a little over an hour earlier by e-mail). That said, Patrick was helpful and we even test drove a 2008 Scion TC that would have been my second choice for vehicles. He even dealt nicely with the wheelchair and was clearly invested in the process. I also felt, perhaps, that Patrick was one of the more honest sales people that I encountered and that he was in tune with what I actually needed. Maybe I was wrong, but I sensed him steering me away from something that would not meet my needs. Ultimately, I was hesitant to buy a 2008 Scion with 70,000 miles and only a modest warranty. While a Toyota product is likely to last, I’d really hoped for a more recent vehicle this time around. I was also impressed that he completely owned when he’d made a mistake on the price of the vehicle. If they’d had a later model Scion or simply a car that would work better, I was completely comfortable with this experience.

Finally, I found myself ultimately buying from Cherie, the internet manager for Ray Skillman at his Kia-Mitsubishi location on Shadeland Avenue. Skillman is a long-standing Central Indiana presence with more dominance on the Southside. I’d also previously bought a car from him and, in fact, it was one of my better cars. That said, I’m not a Southsider and I’d just never made my way back down there when looking. As is true of most car dealers, feedback is mixed…I had a co-worker whose husband is a mechanic and refers to him as “Ray Screw ‘em.” He said I should go to Hubler next door. At the time I last bought from Skillman, I also had an offer from Hubler.

I will admit that my initial feeling from this Skillman dealership was mixed, but there was something I liked about them. I got the sense that Cherie was real and her assistants were quite friendly. I’d set up an appointment by e-mail for a specific vehicle, but we quickly learned it didn’t work with the wheelchair. She asked questions and looked around. She tried to figure things out. She got me a good price and seemed genuinely interested in making it work. Thus, I ended up with a fairly priced car that was still under warranty. She was direct, but not high pressure and she was friendly without that squirm-inducing tone that often accompanies when someone’s trying to sell something. While it may not have been the perfect deal, it seemed like the perfect deal for me.

There were, of course, other experiences and many other dealerships I contacted throughout the month. Heck, most days I’d sit at home checking out the car websites online and trying to figure out “What next?” I dealt with, at least briefly, other dealerships including Hubler, Skillman on the Southside, Andy Mohr Chevrolet, Tom Wood Toyota, Penske Chevrolet, Butler Fiat, and many others.

I am not sure I can even express how relieved I was to finally sign the paperwork and be able to say “Okay, it’s done.” While I love the challenge of being a customer, there’s just something about the car buying experience that is frustrating and anxiety-inducing. As was true the last time when I bought the Sebring, there were some great moments and some horrid moments. There were times when I wondered if I’d ever find the right one, and there were times when I thought that maybe I was being just plain too rough on folks.

The gimp loves going shopping, but I’m sure glad that shopping for my new car is done for now….ricksnewcar

The Gimp Rant #51 – Kindness and Customer Service

It started off like any other meal after a hard day at work. I was getting together with a friend whom I’d not seen for most of what had been a very long winter season in Indianapolis. I was tired, a little grumpy from a busy day in the office, and I desperately needed a couple hours of good old-fashioned relaxation.

Truthfully, I wasn’t completely thrilled about our agreed upon location of the Johnny Rocket’s in Circle Centre Mall in downtown Indianapolis. It was nothing against Johnny Rocket’s, in fact I love the food and the atmosphere, but it had much more to do with not wanting to hang out in a busy downtown mall surrounded by loud shoppers and the growing crowds of people gathering downtown for the National Rifle Association’s national convention going on this very weekend in Indianapolis.

However, my desire to see my friend outweighed my desire to be fussy about our location and, on the flip side, it was only two blocks from my office and required very little effort to get there.

So, I dutifully left my office shortly after my 4:30pm quitting time and wheeled on over to the mall to do a little shopping before our planned 5pm dinner. After a few minutes of shopping, I decided to head on over to Johnny Rocket’s and enjoy a few minutes of 50′s music and people watching before my friend’s planned arrival.

I was greeted enthusiastically by Vee, a young woman who greeted me with a warm smile and the kind of friendly warmth that made me wonder if I’d stumbled into a 50′s version of “Cheers.” I told her that I had a guest joining me in a few minutes and she led me over to a table near the back of a rather large dining area. While her next action could have been considered a faux pas, the graciousness with which she accepted my feedback and fixed her error quickly made it a huge plus in her favor – the table to which she’d led me happened to be against a four-top set against a back wall. When she pulled out a chair to allow my wheelchair better access, she inexplicably pulled out the chair facing the wall.

Now then, who actually wants to eat facing a wall?

I thought about it a few moments. After all, I could easily wait until she left and change seats myself. Alternately, I could have also accepted this “assigned” seating.

That was unlikely, especially given that I had a guest arriving.

After a few seconds, I simply asked “Do you mind if I sit on the side here? I don’t really want to face the wall.”

She looked at me. She looked at the wall. She smiled. Then, she said “Duh, I should have known that.”

She quickly changed the seating in a way that both acknowledged she could have selected better AND, better yet, she actually fixed it without a change in attitude. It was awesome.

She stated my server would be with me in a moment and left. My dinner guest arrived within a few moments and Vee, by now established as our server, arrived with just as much warmth and enthusiasm as I’d been greeted only a few minutes earlier.

I’ll admit that I’m a sucker for kindness. I’m willing to forgive just about any mistake someone makes if, in the process, they radiate kindness and compassion.

This meal was, quite simply, one of my most enjoyable dining experiences in quite some time. While I was certainly thrilled to be able to gather with a friend after a long winter, it was the friendly, engaging, and enthusiastic service of Vee that really made the night complete.

Vee was attentive without being invasive.

Vee was friendly and engaging, but not flirty or contrived.

It’s so common anymore to feel like you’re being rushed out the door of a restaurant even as you just arrive at the table. This friend with whom I’d gathered for dinner and I have been friends for over 20 years, and I have fond memories of numerous late nights sitting over dinner at Applebee’s or Denny’s or any other business open late where we would sit for hours while enjoying a meal, talking, laughing, and otherwise relaxing for anywhere from an hour to a few hours. That doesn’t happen much anymore.

Have you been in an Applebee’s lately? You’re pretty much offered two refills of iced tea before you’re left alone with the not so subtle hint of “It’s time to go now.”

So, this evening was something special. Vee actually served us without ever serving up a hint of “Aren’t you guys done yet?” In fact, at one point we were aware that we’d been there what was likely a bit longer than their usual customer and I explained to her “We haven’t been able to see each other all winter and are really catching up.”

How did she respond? She basically responded with a “That’s wonderful. There’s no rush. It was a really hard winter, wasn’t it?”

Then, she unexpectedly kept serving us iced tea even as we lingered and offered us an iced tea to go.

But, then we didn’t quite go right away.

So, she served us another iced tea in glasses.

The entire time she was outgoing, friendly, sociable and warm. She joined in every time Johnny Rocket’s did their little sing-along dances (If you’ve never experienced this, I recommend it).

In terms of my disability, she was also a server who didn’t just “deal” with it but seemed genuinely comfortable with it. With ease, she would sit down at the table when talking to me which, if you aren’t aware, is a natural way to establish eye contact with someone who is sitting. She kept a healthy distance, but was equally attentive to both my guest and I. You’d be amazed how often when I’m dining out with someone that they will address all their questions to my guest. It’s a not so subtle “disabling” of my personhood. Vee avoided this kind of behavior beautifully.

In short, Vee served up perfect service because she not only served incredibly well but she did so with kindness and enthusiasm and the kind of engaging personality that most restaurant managers wish they could teach to everyone.

By the end of our meal just shy of two hours after our arrival, I’d enjoyed a good meal, great company, and simply fantastic service that made me ready to tackle the world again and made me realize that kindness can overcome just about any obstacle including a busy mall, a crowded convention, and a tired and grumpy gimp.