I’ve been trying for the last couple of days to think about how to put into words my feelings over the last few days of my life. About two weeks, I asked my boss at my full-time gig if I could take a couple extra days off over the Easter weekend in order to try to get some things in my life in better order. She came back with an even better offer – Why not take the whole week?
So, I did.
I’m not big on the whole concept of “vacations.” I enjoy my job and I tend to save my vacation time for the various fundraising and outreach activities I offer in the community. Sure, I’ll take long weekends. That’s about it. However, as I’m getting older I’m definitely finding that my body needs to rest and I need to adapt more and more to my changing limitations.
That was my vision for this week off – rest, deal with life, schedule doctor’s appointments and try to finish writing my next book.
I very quickly realized that working on the book was going nowhere. I wrote, but what I wrote completely sucked. Truthfully, as much as I love writing it is work for me. I really needed time away from even the writing aspect of my work life. I’d intentionally scheduled the week during a time when I didn’t even have a movie screening. I had lots of opportunities to rest and very few distractions from doing so.
My body has been kind of rough lately. Everything I do is taking a longer time and I’m finding myself at times making intentional choices about what I will and won’t do. There have been times when I’ve lamented my decision to leave the security of Social Security Disability in favor of full-time work. I’ve often wondered why the government doesn’t offer some kind of balance for those of us able to be productive yet needing some level of assistance to do so successfully.
In case you’re unaware, let me give you a bit of background about my situation.
First off, you probably realize that given my having spina bifida and hydrocephalus and various kidney, bladder and neurological issues that my prospects from having been born in the 60’s were slim. I started defying the odds early in life, but even I’m surprised I lived this long. No one prepared me for “life.” I wasn’t expected to live it. There were no discussions about relationships or work or anything like that. As I got into college, there were some discussions about college but given my high school GPA even those were approached rather lightly. My parents had always heard that I would be intellectually disabled and fully dependent. While I had massively transcended my circumstances by high school, the expectations by the time I graduated weren’t much higher. I failed my first job out of high school, mostly because I couldn’t manage myself physically and was in a position that required a professional appearance.
It was a disaster.
I moved out of my parents’ home about this time, something no one ever thought would happen. It was as much fueled by the stress of living at home, but it was still considered an impossibility. With one solid work failure behind me, everyone decided that I’d be much better off on disability. So, there I went. I spent eight or so long years receiving disability and, quite honestly, I could probably qualify again. A variety of my factors went into my decision to leave disability, but the journey moving toward it was very intentional. I went back to school and finished my degree. I found stable housing. I found a job, which I happened to land while an intern for the hospital. They had a handful of interns, but I was the only one who’d made it in on a day where 8″ of snow was on the ground.
They were impressed with my perseverance. They were patient with my professionalism. I was employed.
When I left SSD behind, everything in my life changed. I loved the freedom of not being accountable to nurses, case managers and such. But, quite honestly, I really missed having physical supports. I had a CNA three times a week who was suddenly gone. I’d always struggled with the basics of self-care, even with help. Without help? Let’s just say that hygiene was mentioned more than once on my work evals.
But, I persevered and for the most part have never regretted changing my life path and undefining those limited expectations for my life.
This past week has brought all of those old feelings back as I took some time off work and devoted myself to figuring out how to deal better with my changing physical being and what it means to be in the mid 40’s with spina bifida. I still work full-time, though in a different and less demanding field. In addition to my full-time gig, I’m a freelance writer and minister. I stay remarkably busy. I’ve traveled over 3500 miles on my Tenderness Tour. I drive. I live alone. I realize I’m incredibly blessed, because I know other folks with spina bifida who still live on disability or have lived most of their lives dependent on others.
Sometimes, I’m discovering, I’ve worked so hard for independence that I’ve neglected my body’s needs. I’ve perfected “suffering” to such a degree that when my family physician was attempting to diagnose some symptoms this week she looked at me and said “With most people, C-Diff would send them to the emergency room. I don’t trust you, though.” In other words, I suffer well. I suffer in silence.
So, for the most part my physical support system has dissolved with the exception of having a wonderful church that mows my lawn and being fortunate to be surrounded by folks with a techie brain that I surely don’t have. My body? I’m finding that people are so used to my independence, that any level of dependence is inconceivable. I’ve often admired the ministry of Joni Eareckson Tada, an internationally recognized disability advocate who became a quadriplegic after a diving accident at the age of seventeen. She’s internationally acclaimed and beloved, yet in many ways very much reliant upon others for her daily living.
That’s what I want. I want to be free to be who I am and how I am while not having to sacrifice the gifts I bring to the table.
How do I do that?
I think part of it goes back to that idea of having a system that wants it to be “all or nothing.” Either you are disabled or you’re not. There’s nothing in the middle. I remember the overwhelming trauma of suddenly having to manage my own body when home health went away. Man, I really understand why people wouldn’t want to do it. It’s scary. It’s difficult and sometimes it backfires. I used to have a stronger personal support system and I could sort of compensate for the shortfall. When my primary physical support person died a little less than two years ago, I really started to feel alone.
It’s scary. Really scary.
When I went to doctors this week, I found myself further dismayed. I suppose I hadn’t had multiple appointments in a short time span in quite awhile. Now, I remember why. When I was on Medicare, most doctors accepted assignment and didn’t worry too much about co-pays. I could pretty much go where I needed and when I needed. Commercial insurance? Not so much. The idea of preventative care, even with current healthcare changes, is ludicrous. My preventative care typically involves CT Scans, urological work-ups and more. It’s not affordable and not easily approved. Heck, getting a wheelchair approved is difficult. I bought my last chair off Craigslist.
I’ve considered hiring home health lately, but insurance doesn’t cover it if you’re not homebound and even the most generous rates go beyond what a fairly “average” worker can afford on top of the usual medications and healthcare supplies that are a part of daily life.
Basically, my life is a series of choices and compromises and risk-taking. Just this week, a physician prescribed a medication but I couldn’t afford it. So, I don’t have it. Fortunately, I’m on an antibiotic first trying to deal with an infection which I’m hoping buys me time to find a way to get it. But, this is my life. I have to pick and choose. I’m certainly not alone. I’m certainly not asking for nor needing any pity. I just think to myself that there has to be a better way, because if I quit working to go back on disability then another taxpayer is lost and I become dependent on the system.
It doesn’t need to be that way.
Because my full-time gig is in the area of disability, I see this same type of thing a lot. I see people with amazing potential who are sort of “stuck” by their circumstances. There are lots of folks who truly need wrap-around services, but there are so many people who desire a better life but there’s not a system or a community that empowers such a thing. One of the greatest things I’ve ever witnessed involved a friend of mine. He was a quadriplegic who lived in subsidized housing. He was a faithful churchgoer and, in turn, his church was absolutely remarkable with him. Every morning and every evening he had folks over at his house helping him out, assistance that supplemented that naturally provided by the system. It was amazing and he prospered with it.
I think a lot of people are in a similar situation. It seems like in society we’ve become more isolative and less communal with one another. We’re less transparent and less vulnerable with one another. Some people seem to want the “system” to do everything, while other people seem to feel like the system only creates dependence. The truth, I think, is somewhere in the middle.
We say we care, but do we live it?
We say we love one another, but are we showing it?
One of my core faith beliefs is simple – we are responsible for one another. Some people require a lot more time and attention and hands-on presence. Some people will seek too much. Some people will become dependent. Some people may even betray us. But, it seems like our cynicism is getting the best of us and we so seldom get involved in each other’s lives. I suppose I don’t help the matter in my own case, because I’m naturally isolative and, if I’m being honest, by the time I notice things are out of control they’re typically really out of control.
As I was leaving my appointment with one physician this week, I found myself incredibly dismayed to realize that during an appointment where I acknowledged concerns with skin integrity, body function and shoulder pain that this person hadn’t sought to actually examine me even once. There wasn’t a look or a touch. There was a discussion. There was research and, yes, I think this physician trusts my opinion. But, it felt like there was a disconnect. So, healthcare’s not affordable and it’s disconnected from the person? I had a similar disappointment while at a dentist this week. If you’ve ever seen me, you know that my teeth are in pretty bad shape. Between some early life damage and my natural health issues along with my own issues with self-care, I’m at a point where some serious work needs to be done. The physician in this case was patient and understanding, but the hygienist exhibited a tremendous lack of compassion that left me wondering if I’d return. By the end of the week, I began to feel like I was facing insurmountable obstacles.
There are no easy answers, but I do know we can’t continue “as is” and hope to maintain our society. I don’t believe that affordable healthcare is a luxury. I believe it’s a necessity for a stable society. I also don’t believe we can continue down this path of isolation and not caring about one another. Again, I don’t think there are easy answers. But, there are answers and I believe it begins with me and you.
When I wrote “The Hallelujah Life,” had a vision of becoming more transparent in my daily life. My next book will up the ante quite a bit in dealing with many of these issues. I’ve always struggled with casual friendships and relationships, because I’m naturally an invested person. When I ask “How are you?” I really want to know. While I’m not great at being a physically supportive person, you’d be hard-pressed to find a more emotionally present and available person. My needs, quite obviously, are more physical than emotional.
I believe we’ve got to start re-growing our sense of compassion for one another. Too often, we’re content to let others address a need or to let a system address a need. WE have to be willing to address the needs that we see in our daily lives. We’ve simply got to become more inclusive with one another, including involving those in our lives who may require a bit more work. Every single day of my life for the past 15 years I’ve told at least one stranger that they are beautiful. That may sound random and not particularly involved, but you’d be amazed at its impact. I think it’s grounded mostly in becoming more observant of those around me. If I’m actually looking at you, I’m much more likely to see your needs.
That mother in Wal-Mart who is having trouble managing a child? Rather than judging, why not try to help?
That person you know who’s always dressed in dirty clothes (No, not me!)? Why not offer to help with their laundry?
We all know someone or many someones who need help or hugs or assistance or whatever. I’m not talking about the “when it’s convenient” assistance, but when it’s actually needed. I’m talking about the kind of relationship that, perhaps, is much like the L’Arche communities where those with disabilities and those who are considered able live together in community and are valued for their contributions. I personally think that such an arrangement is far more beneficial for everyone involved than a system, like most disability services, that too often victimizes rather than empowers.
I finished my week off realizing that some things in my own life have to change in order to adapt to living in the body of a 40+ year old with spina bifida. But, I refuse to become anything less than the vibrant, productive and workaholic gimp that I have been in the 20 years since I left disability. The simple truth is that I’m starting to realize that I need community and I have complete faith that community still needs me.
The needs have changed but the truth remains the same.
Love is more powerful than disability. Now, I just have to figure out how to live into that.
Who's Yer' Gimp? 