“Dis Amazing Life” Begins

It was a few years back that I began writing a blog called The Gimp Goes Shopping, a snarky but well-meaning look at my life as a customer with a disability. I rated businesses, talked about accessibility, tackled social problems, and created what I called “Gimp Rants,” my own little response to both personal and global issues. As it would turn out, my “Gimp Rants” were always my most popular blog posts. By far.

A few months ago, as I faced the 25th Anniversary of my Tenderness Tour events, I began to realize that The Gimp Goes Shopping had become more and more about the ins and outs, joys and sorrows of living life with multiple disabilities. I began to realize that what I had to say no longer really fit within the confines of The Gimp Goes Shopping. So, out of nowhere, I stopped writing it.

I kept thinking “I’ll get back to it when something strikes me,” but nothing ever really did. It was a few months ago that I also noticed my life changing dramatically as my physical support system began to, at least it felt like, crumble before my very eyes.

It was a couple years ago that my best friend killed herself. She was, maybe more than anyone in my life, the person who knew the intimate details of my disability. She knew them. She loved me anyway and I never doubted it. She’d been there for me through some majorly awkward situations, helped me through some amazingly embarrassing situations, and forced her way into my life in a way that was both suffocating and freeing.

Then, she was gone.

A little over a year ago, I began experiencing what many young to middle-age adults do – the aging of the parents. While I’ve never really had a close or physically involved relationship with my parents, my mother had some semblance of a presence in my life and when that went away out of physical necessity it was like another layer of my safety zone had disappeared.

Oh sure, I had a friend or two who’d occasionally experienced my disability on a personal level. But, it was rare. Then, a few months ago, I felt like I’d become an observer to the disintegration of my “ability.”

Yes, I’m being melodramatic. But, that’s how it felt.

As I slogged my way through some leadership obligations for my church, I hit a wall. I realized I simply couldn’t push my way through the obstacles, the pain, and the exhaustion anymore. So, after looking around my life and realizing my life would crumble if I didn’t find a way to stabilize, I began to deconstruct the life I was living that required me to live in a way I could no longer live.

I had spent so many years “overcoming” my disability, that I’d never really given myself permission to have a disability or to have needs or to need physical supports. While I’d never really required a caregiver, at least not since my early 20s, I suddenly realized that my continued success in living independently required the presence of those who empowered and, yes, those who cared.

“Dis Amazing Life” is about life in all its wonder and glory, through the joys and sorrows, successes and failures, fears and overcoming of it. It’s not just about “disability,” per se, but it’s about living into the fullness of life and engagement and relationship and intimacy.

It’s where my blogging life needs to go now, a more engaged effort that goes where my writing was going anyway – into a world of honesty and intimacy and authenticity and speaking my truth. “Dis Amazing Life” comes on the heels of my new book, “Original Skin,” which talks about my disability and my history with touch in a way that is raw and honest and scary and yet more exhilarating than I ever possibly imagined.

In a world that can be so connected online, it seems that sometimes we forget to connect in real life. The other night, I was out with a friend who casually and briefly touched my wheelchair. I’m almost certain to her it meant nothing, yet for me it was a symbol of comfort and connection.

I’m learning how to show up, not just in my strengths and my overcoming but in my fears and vulnerabilities and needs.

When I look back on my life, through all the challenges and failures and hurts, the word “Amazing” keeps popping into my mind again and again and again.

Dis Amazing Life. Welcome to it.

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.

 

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….

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.

 

The Gimp Rant #49 – Grief Without Death

My gut told me to call.

My mother had just been hospitalized for the second time in a month. The first time, I hadn’t been called and I was more than a little upset.

This time. I was called.

My mother assured me that it was nothing to be concerned about, though I’ll admit I ended our conversation more than a little concerned as my normally optimistic mother had been unusually vulnerable and honest in describing how her struggles had been impacting her daily life. As the hospital she was in was a decent drive for me, she made great effort to assure me that my planned visit during the upcoming weekend would be perfectly fine.

It didn’t feel fine.

The very next night, a Friday night, I trusted my gut and called her again. We had only a brief conversation about her health, my life, and my planned visit the next day. It was, especially for two people who didn’t routinely have deep conversations, an immensely satisfying few moments.

When I arrived the next morning, everything had changed. Over night, the doctors had become concerned with some abnormal labs and decided to transfer my mother to the Intensive Care Unit for closer monitoring.

They were concerned, but not necessarily critically alarmed.

Then, in the midst of placing a G-tube “it” happened.

For reasons not completely determined, my mother coded.

My father, who has never been even remotely comfortable in hospitals, spent the next several moments at a complete loss as what had been described as a routine procedure had now suddenly become a life-and-death situation. Suddenly, the woman with whom he’d spent 48+ years of his life in marriage was barely hanging on to life despite, only weeks earlier, having still been working in hospitality for that very hospital.

She was only 68-years-old. She was vibrant and active. I mean, sure, she had health issues but nothing that would have ever caused such alarm.

But, there she was.

Having been born with spina bifida, I’ve always been the one who was supposed to die first.

We all knew it. We all planned for it. Heck, there was no long-term planning in my life until I actually did arrive in my 20’s and doctors stopped predicting my demise. If you’d have ever told me that I’d live long enough to even contemplate the mortality of my parents or my brother, I’d have likely laughed in your face.

But, there she was.

I arrived at the hospital that Saturday morning expecting to have a pleasant and uneventful visit with my mother.

Instead, I listened to my father describe the moments after moments after moments that he spent waiting for some word.

They brought her back. He was relieved, though I’m not completely sure he even understood everything that had happened.

She was alive, but she was on a ventilator. She would stay on the vent for several days, days in which my father and I spent more time together than we’d probably spent in the past several years combined. We consoled each other in that sort of guarded, non-communicative way that the Propes men communicate. We clung to hope despite the occasional setback, and while we had concerns about her care in the small county hospital where she was being treated we also rejoiced that she was surrounded by friends and co-workers who really cared about her deeply.

There were so many unanswered questions.

Why did this happen? Would she survive? Would she be who she had been if she did survive? How long had she truly gone without oxygen to the brain? What would be her quality of life?

My father, who had retired only a couple years earlier after spending a lifetime working as a carpenter, functioned amazingly well and displayed more emotions than I’d probably seen from him in my entire life.

She is his entire life.

I mean, c’mon, 48 years? I can’t imagine. I’m excited when I make a relationship last 48 days.

After several days, she came off the vent and was transferred to a progressive care hospital. After about 10 days at that facility, she was transferred to a rehab hospital in hopes that she could build up enough strength to return home.

Then, another setback and another admission to a different hospital. She was in critical care once again and, yes, she was back on the vent.

Now, she is back at the rehab hospital.

We are starting to get answers. We are starting to understand. Even as my parents’ 49th wedding anniversary passed just a little over a week ago, I’m starting to see that everything has changed.

She is still my mother, but her ability to function in that role is disappearing. While our relationship has always been functional yet strained, recent years had brought about new understandings and new attempts at building a bridge over those things that had divided us. She may not have been a “traditional” mother, whatever that means, but as I look at her now I realize that so much of what has defined her has disappeared.

I don’t think it’s coming back.

There are days that she recognizes me perfectly. There are days when she’ll say she recognizes me, but she can’t quite recall the name.

Then, there are days when the severe brain injury that resulted from those moments without oxygen has left her with corrupted memories and thoughts and function. We went through a period of 72 hours where we had the most remarkable, vulnerable and honest conversations.

Then, they were gone.

The challenge now is figuring out if she can heal enough to return home, a stated goal of hers yet a goal complicated by her inability or refusal to eat or build her strength.

Maybe she can. Maybe she can’t. After two solid months in four different hospitals, I am left with this weird and undefinable grief that doesn’t seem to have any tangible markers other than the truth that this person I have known as mother and this person who has functioned as mother, wife, sister, daughter, grandmother, employee, friend and so on has changed.

As an adult with a disability, it scares me more than a little because here was the last person who really understood my disability even if her involvement in my daily life had long ago been set aside.

As her son and as a man whose personality is more than a little like hers, I find myself frequently leaving the hospital angry because these people who now care for her, and I know they’re doing their best, but they don’t “know” her and they don’t seem to really want to know her.

To them, this is her “baseline.” This baseline, though, doesn’t account for years as a wife. This baseline doesn’t account for being a 20-year-old newlywed suddenly forced to deal with a child with a serious disability and a short life expectancy. This baseline doesn’t account for her years working as a top salesperson for a food wholesaler or even for those goofy years when she tried selling used cars. This baseline doesn’t seem to even acknowledge that just three months ago, my mother was working at the front desk of a hospital providing smiles and nurturing for families who were scared and grieving and frustrated just like ours.

This, as much as this is her life experience right now, is not her identity. It doesn’t erase the joys and the sorrows. It doesn’t erase the victories and the failures. It doesn’t. It just can’t.

In our last truly coherent conversation, we both said “I love you” and we both laughed at how she was learning all those lessons first-hand that I’d learned in my years in hospitals. She told me that she’d never said she was proud of me enough and I responded with “and I’ve never said “thank you” for turning me into who I am nearly enough.”

There was a moment of silence. Then, we said “goodbye.”

Then, everything changed.