A Memorial Day Reflection

It couldn’t have been easy.

She was a young woman just beginning married life. She was 19-years-old and had her entire life ahead of her, but then one day her entire life became this fragile baby with a life-threatening birth defect who would spend the next few weeks and months in a body cast and having surgery after surgery with doctors never knowing if “this surgery” might be the last one.

It couldn’t have been easy when her priest, a good man whose words must have been well intended as trying to make some sense out of this unfathomable tragedy, suggested that perhaps it would be God’s Will if, indeed, this new life might not survive.

She wouldn’t have it. She wouldn’t have any of it. Given the choice to allow my passing, my mother instead fought like hell that I might survive and thrive and find a place in this world.

I think about this story every Memorial Day, admittedly a day that found its origin as a day honoring the Civil War dead and eventually growing to inclusively honor all those who have died in service to the United States, as I spend the day reflecting upon those whose unimaginable devotion to the miracle that is my life has allowed me to live in a way far beyond anything that anyone ever imagined.

I think of the unwavering faith of a mother whose refusal to simply give up planted in me a fierce devotion to life and to service and to perseverance that would withstand even the lowest points of a challenging life marked by lifelong health challenges,  severe sexual abuse, and multiple traumatic losses.

I think of the doctors at a small county hospital who willingly received my then broken body into their facility from an even smaller rural hospital ill-equipped to save me. I think of the doctors and nurses who immersed themselves in my survival and loved me and nurtured me as if I was their own. I think of that one nurse who spied me in a parking just three years ago, a man in my 40’s having survived long past my life expectancy, who remembered me from those first days of my life and who remarked “I knew it was you by the look in your eyes.”

Man, she must’ve really fought for me.

I think of the teachers and professors who found something different in this young student who had been labeled as “disabled” and “special” and “retarded,” yet in whom they saw something transcendent and alive with potential. Mrs. Pruitt. Mrs. Zimmer. Mrs. Jefferson. Mrs. Booth. Sister Marian Ruth. Father Boniface Hardin. I think of those who fought like hell so that I would not be labeled as “special,” but would have the opportunity to experience the fullness of education even if it occasionally meant my grades didn’t go as well as we’d hoped.

I think of those teachers and professors who fostered my newly discovered creativity and helped me discovers ways to express things that had always been locked up inside my brain. Mrs. Jefferson. Mrs. Booth. J. Edgar Webb. Dorothy Webb. Clara Marshall. Father Boniface Hardin.

I think of those friends and peers in school who never let me feel abnormal and whose conscious and intentional integration of me into their lives challenged any concept of disability. Ronnie Crist. Valerie Lambert. John Albrecht. Kirk Markham. Heidi Nelson. Gary Cornett. Victor Smith. Wardean Davis. There were others.

I think of those who felt the aftermath of how experiencing sexual abuse shattered my peaceful world, yet they figured out how to love me anyway until I could reach a point, years later, of loving myself again. Lisa Stewart. Melissa Miller. Celeste. Valerie Lambert. Victor Smith. Rose Kleiman. Laura Q. Propes. Betsy Whaley. Robyn Boone. Jennifer Carpenter. Michie Rollison-Sebree. Leslie Fuller.

I think of those who fought like hell for my survival when every fiber of my being had given up. I think of the ones who listened and the ones who held. I think of the ones who nurtured and the ones who counseled. I think of the ones who took late night phone calls and, yes, I think of the ones who finally said “enough.” I think of the ones who took guns out of my hands and lighters out of my hands and who built me up even when they knew I was going to knock myself down again.

I think of the ones who refused to give up on my potential and offered me chance after chance after chance to grow and learn and prosper and work. I think of a father who didn’t hesitate to help me obtain my first job at his place of employment – oh god, how I was so horrible yet it was a start. It was a precious start. I think of Leo Stenz, who took a chance that didn’t quite pay off. I think of everyone at Winona Hospital, a small hospital in Indianapolis that took a chance on some guy who’d decided he didn’t want to live on disability anymore and who finished his degree and wanted a job. They hired me and made me something better than I ever dreamed I could be. I think of all the employers that would follow and the ways that I learned, sometimes minute by minute, how to grow into someone with a strong work ethic and a fierce sense of loyalty.

I think of the people who love me “anyway.” I think of the people who somehow don’t see the disability even when it’s the only thing that I myself can see. I think of the people who’ve allowed friendship to be redefined to allow for a level of personal assistance that sure isn’t for the squeamish. I think of the friends who’ve at times in my life helped me get dressed or get showered or clip nails or wash clothes or clean the house or mow the lawn or wipe body fluids off of high ceilings while I cowered in shame and they just wondered “How did that even get there?”

I think of the people who’ve supported my biggest dreams and who’ve followed me along the roads of Indiana and beyond as I toured and shared and raised funds and processed my own demons. There are way too many of you to possibly mention all of you. You’ve driven hours to support me in all kinds of weather and I consider that completely and utterly amazing.

I think of those who’ve helped me maintain my faith in God, a relationship that is weird and exciting and authentic because in my life it couldn’t have survived any other way. Jeanne and Scott Rieger (and family). Jennifer Carpenter. Phil and Louie Rieman. Tom and Nancy Faus-Mullen. Kerry Baldwin. Father Boniface Hardin. Sister Jane Schilling. Sister Marian Ruth Johnson. Friends from Jehovah’s Witnesses, Vineyard Christian Fellowship, Eagle Alliance, Unitarian Universalist Church of Indianapolis, Church of the Brethren, Disciples of Christ and others.

I think of those who taught me that touch could be a loving experience and kept reminding me again and again and again in a myriad of different ways. Lisa Stewart. Celeste. Victoria Sack. Michie Rollison-Sebree. Melissa Miller. Robyn Boone. The nurses at Wishard Memorial Hospital. Elizabeth Aldora. Amy Beery. There were so many others who refused to allow my body to only experience the violence of my mind.

I am a pacifist, or at least I try to live my life as something resembling a peacemaker, yet I spend this Memorial Day reflecting upon those who’ve given their hearts and their souls toward helping me fight my wars, both real and imagined. I spend this Memorial Day reflecting upon those who’ve fought like hell for my happiness and my health and my prosperity and my learning how to live a life of tenderness. There were those who lost their own battles and I grieve that loss and I hold tightly to the light they so enthusiastically shared with me. There were those who continue fighting their own battles, yet like me they’ve figured out that by sharing our light somehow it makes our own light brighter.

On this Memorial Day, I’ve come to realize that serving the United States is serving each one of us and I spend this day living in a state of awe and gratitude for those whose sacrifices have allowed me to fully live a life filled with joys and sorrows and successes and failures and connections and disconnections and love and loss and love again. I am grateful, not for the wars that we’ve endured, but for those who’ve fought like hell so that I might have a better life than anyone ever imagined.

On this Memorial Day, I’m grateful for those who serve this country and its people in ways that I couldn’t or wouldn’t. On this Memorial Day, I reflect upon what it means to serve and sacrifice and fully surrender oneself to a higher cause. I may not believe in or be grateful for war, but I am grateful for those who are willing to give everything they have and everything they are to improve people’s lives, protect that in which they believe, and in serving people they don’t even know and people with which they openly disagree.

There aren’t words to adequately express my gratitude for those whose sacrifices have embraced ability over disability, victory over victimization, love instead of hate, and peace instead of conflict. You’ve given your hearts and minds and bodies and lives to me and I can only pray I’ve used your sacrifices well and in a way that honors everything you’ve given. I can only hope and pray that I’ve offered those same sacrifices of heart, mind, body and soul to others and that somehow the circle has gone unbroken.

Now then, when today is done and the celebrations are set aside and the rituals have been completed. I truly give thanks to those of you who will do it all again tomorrow.

Peace, RP

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Making Love Our Only Reality: A Response to the Duggar Family

I can still remember being a young child sitting in this room at the Kingdom Hall where I had attended church my entire life. As the elders, Steve and Howard, who had joined me in the small meeting room began to speak, everything in my mind became a blur and I struggled to respond to their stern voices and not so gentle inquiries.

You were seen “with a boy,” they would say. You were “naked,” it felt like they were proclaiming. “A neighbor saw you and called your mother,” they asked both inquisitively and accusingly.

“You have sinned,” they pronounced after my fumbling attempt at an explanation failed to satisfy their one-sided inquiry. “You’ve engaged in homosexual acts” and we can’t have you around the other children, are words I’ve heard for years and years and years to the point that I have convinced myself that I possess some unfathomable evil that defies human connection.

That was it.

I was eleven-years-old. I was deemed gay by the church that I trusted with my life, yet this version of being “gay” was somehow marked by this memories I held deep within my psyche’ of sexual violence, rape, gang rape, significant physical abuse, and constant humiliation that would only leave after my perpetrator, an older teenager, would finally leave Indianapolis with his family.

My mother knew this pronouncement, though over the years we have only occasionally spoken about the lifelong series of aftershocks that resulted from this absolute failure to protect a vulnerable child. There were no consequences for Jeff, my perpetrator. There were no police reports or counselors. There was no soothing voice vowing to protect me no matter what.

There were scars left, both physical and emotional, that compounded the physical limitations of a body already disabled since birth from spina bifida.

There were burn marks on my thighs, buttocks, and in various places surrounding my body from cigarette butts inflicted at will whenever I resisted what was always inevitable.

There were teeth, already a little misshapen from my having hydrocephalus, now left more crooked than ever from being violently pushed down into a sandbox.

There was a penis that had been burned, though I think the words “I’m going to ruin you for everyone else” is even more burned into the psyche’ of my mind and my ability, or mostly inability, to maintain relationships and be comfortably intimate.

There were the memories that caused this youth who already struggled with self-care and daily tasks to decide that just saying “fuck it” was the best way to keep people out of my life. It was the only way I could make sure I was never hurt like that again.

On the outside, everything was fine. I smiled. A lot. I laughed. A lot. I functioned, though not very well academically. I somehow floated through life getting this done and, for the most part, being a likable guy whose scars were only noticeable to those who looked long enough to be truly aware.

Of course, I struggled physically. It has taken me years to admit that I’m probably not meant to live an isolated existence and as my guarded personality took hold I saw my ability to maintain myself physically waver. Maybe unfortunately for me, I’ve always had this disability and it has always given me an “excuse” that kept people from digging deeper, trying harder, and reaching through the scars.

Eventually, I fumbled my way through the trauma. Not surprisingly, I left a fair amount of trauma and drama on the ground when I finally started to move away from the traumas and injustices of the past and moved into healing and hope and figuring out that I could somehow create a different reality for myself.

Yet, I can’t lie. When the news came out that Joshua Duggar, a member of the TLC Channel’s Duggar family of 19 or 20 or who knows how many, had several years ago reportedly molested several young girls, including possibly a couple of his own siblings, the memories came flooding back, my body began feeling that old dirtiness and shame, and I began to weep once I had finally put aside my quick rush to self-righteous condemnation.

I began, first and foremost, weeping for the young girls whose innocence was allegedly betrayed by an elder brother whose role should have been of protection yet became one of perpetrator. Yet, it was also an innocence betrayed by some skewed and perverted sense of what it means to be a Christian. Amidst all the fury over Josh Duggar, I find myself saddened that we haven’t spent more time discussing the lives of those young girls whose lives he impacted. Did they get the support they needed? How are they now? Are there others who’ve stayed silent?

Then I wept, yes, for the Duggar Family, whose faith, dysfunctional as I may see it, demanded that they trust the guidance of those within their circle of faith. I didn’t just weep for a family that has chosen to live their lives in front of a camera, but I wept for the soul of a family with small children who are left trying to understand why their family, beloved by many just a week ago, has been pulled from television and is facing the wrath of an American public that spits out its heroes as quickly as it creates new ones. Regardless of what we believe to be the degree of intentional deception, the Duggar family is still a family filled with hopes, dreams, thoughts, feelings, and an imperfect faith and imperfect lives.

I wept for the American public whose insatiable need for role models and heroes and guides has led us, yes I’m including myself, to build altars upon which we place our reality stars and athletes and movie stars and politicians and long-suffering overcomers and anyone else that we are able to convince ourselves has their act together in ways we don’t. I mean, seriously, has Joel Osteen really ever said anything beyond your average pop psychology?

The answer is “No.”

The Duggar family, along with the Robertsons or Honey Boo-Boo or any number of other faux models, are placed upon a pedestal made of silly putty and set up to fail. I mean, seriously. How many families have to disappoint us before we get the message that maybe deifying them isn’t exactly the smartest move? How many reality shows have to compromise the welfare of their participants before we get it through our thick-skulled, instant gratification selves that maybe we’re part of the problem for creating a pop culture littered with the scattered skeletons of broken children and ill-conceived heroes? It’s easy to blame TLC, but the truth is if America stops watching the shows then the shows will go away.

Yep, it’s truly that simple.

Finally, yes, I even wept for Joshua Duggar. I wondered what life experience created a young man who would reportedly molest his own sisters and other young girls. I wept that he never got true guidance and support he needed, yet he continued living the life he was told would make everything better. I wept for his family, including a wife who was reportedly aware of what had happened years ago, and I wept for young children whose lives are now changed by a that is not unlike the truth that permeates thousands of families across this country – The difference? Joshua’s family lives their life in the public eye and in that faux role of faith leaders that makes us demand that they somehow be different than and better than the rest of us. Instead of praying for them, we somehow forget that “love one another” applies to all of us and we rush to judge and hate and label. I’m not talking about casual and ill-conceived reckless forgiveness, I’m looking at you Mike Huckabee, but I’m talking about a reasoned response grounded in love and compassion that recognizes the truth while also breathing love and understanding into how we move forward.

And move forward we must.

I wept for those who rushed to condemn. I wept for those who rushed to forgive. I wept for the church that far too often compromises the welfare of its children out of some misguided and abusive belief that the Church is more important than following Christ or whatever spiritual path we choose.

And yes, I wept for me. I wept for the years I lost because my own truth had been swept under the rug leaving behind a broken and tattered youth whose faith in God was betrayed by those who’d pledged their lives to serving God. I wept for the years of self-destructive behaviors and altered sense of reality. I wept for the years when I believed my every touch was dirty and destructive and so unacceptable that I locked myself away and threw away the key. I wept for the tenderness that has guided my life over thousands of miles only to realize it was a simple word I had denied myself.

I wept. Then, I breathed. Then, I remembered that into all of these things I can find a way to choose differently. I can choose love instead of hate, peace instead of conflict. I can fumble my way through years of social awkwardness and chaotic self-care and somehow live into the life that makes love my only reality.

It’s my choice. I can lead others along the path, not in a way that defies but in a way that unites. I can choose vulnerability as my strength, authenticity as my way of being present, and a genuine hunger to create a life that preaches only love.

And so it is…

“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.

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.