Reinventing Myself Every Day

 

   Perhaps you are a lot like me. I have to reinvent myself every singly day. This is because I feel different pretty much every day. Nerve pain changes, or my stimulator implant doesn't work as well on a particular day, the knee that hasn't been replaced yet goes on the blink, or some other issue creeps up, and today is different than it was yesterday. I can understand why people don't know what to expect out of me because I don't know what to expect out of myself either.
     The Apostle Paul, in the Bible makes a statement that I must live by, when he declares that he sets aside what lies behind and presses forward toward the prize. The days of preaching are gone, and the days of singing have passed. The days of representing a Christian college vanished a long time ago and more recently so did the days of public school teaching. Who I was yesterday is not who I am today. Who I am today is not anywhere close to the person I will be tomorrow.
     If I spend all of my days trying to relive what I used to be, I will miss the things I still can be. One thing that is certain, I am considered permanently disabled. That being said, I can now begin to reinvent a whole new me that works within those disabilities. In the past few years I have become a writer, author, blogger, independent publisher, cook, and the best house husband I can be. I stay home most of the time, moving from my desk to my recliner. My circumstances have little to do with what I have to say, or how I can still have influence. As long as I have ideas, I will continue to write.
     I am sure there will be no end to the things people say about me, and while those opinions may affect me for a time, it is what God says about me that is really important. Because of this, I will continue to reinvent myself so that I might have the opportunity to impact a few. If that happens, then what more could anyone ask?

I Have Never Felt So Disabled

It was a delightful experience, taking my wife to the theater to enjoy a terrific musical.  The seats were near the front to get the most of the experience. I purchased seats on the aisle to be able to extend my legs to keep them limber. Though the seats did not fit my back, I was determined to make the most of it. Then, intermission came...

No matter how hard I tried, I could not get up. People wanted out of the aisle to go to the bathrooms and purchase more refreshments. They jammed together as they waited for me to get out of the way, but it wasn't happening. My wife had to climb over the top of me, and pull from the isle way.  Even that took considerable effort to get me unfolded from the shape of the seat. When she finally pulled me free, my legs would not hold me up, buckling with every attempt to move out of the way.

In all honesty, there was not one complaint from those trying to get out of the row.  They could see how much difficulty I was having, and though I was keeping them from their desired freedom, they were very kind. My wife was so encouraging and supportive.  She held me up, and waited patiently for my legs to hold me up. No, the frustration was only with me.

I have struggled with recovery from surgeries, and bore the pain of doing more than my surgically repaired body could handle.  All of those things were expected and approached them with a good attitude.  This was different. I was at the theater, and couldn't do what healthy people could do. I could not explain away what I was experiencing. Suddenly the word "disabled" felt so real.

I am no different than any other person with disabilities. We would rather ignore reality, adapt to what is happening, and move on. But, there are those times when we cannot pretend. At those times you know exactly what I was feeling at the time.  I have never felt so disabled. I wished I had Mary Poppins Umbrella and could just fly.

Invisible illness was brought to light in a dramatic way on 5/5/2013 with the explanation of traumatic brain injury among soldiers.  This is brought about by second and third concussions before the first one was completely cured. How sad to hear of our military personnel being called names, and emotionally abused because they are incapable of moving on with their lives.

Again I ask, what is your story?  What is the injury that is keeping you on the sideline? Share it with me at tgw.bittner@att.net

But...You Don't Look Disabled, The Book

          In a recent conversation with a mental health professional, I was told that my concern for invisible illness is all too common problem for people with disabilities.  "You are a good writer. You need to write a book about it. You can help a lot of people. In fact, your blog title would be a perfect book title." If such a book were written, I would not want the book just to be about my own issues.  That would be a boring book.
          What is your story? Please write to me at tgw.bittner@att.net. Tell me about your disability, and how it affects you.  How do others view your invisible illness? What struggles have you faced? How have you adapted, or even overcome your disability?  I would like to include your story in a new book about invisible disabilities. Your story may be the encouragement that others need to continue on in their struggle.  Let's write a book together.

Everybody Has Down Days

     Everybody has down days.  You have probably heard this phrase all of your life.  But for many with disabilities, the saying feels a little different.  We look forward to the up days.  They are the days when pain has subsided, and we are capable of accomplishing a few things we used to be able to accomplish without thought.

     I have remodeled houses, gutted large portions of buildings and started over, moved walls, done serious landscaping, and built buildings, all while working a full time job. Today I have spend nearly three hours trying to dismantle a leaking bench in the shower. I have succeeded at making a mess, but I do not have the strength to pry off the soggy boards. A good day would be nice.

     I know that I am not alone with this type of frustration. What I am describing is nothing new to you. Yet, when I am just sitting, my mind still believes that I can do these things. My frustration is a product of my own memory.  

     Most posts are general lessons about living with disabilities. I try to be positive and educational.  Today, I just need comfort, and a reminder that I will have some good days ahead.  Anybody?

I Don't Love Enough

A good friend posted this confession on his blog.  Randy Christian and His wife have been friends for many years.  Donna is struggling with a long term issue.  Read this article, and consider if perhaps, you could have written this article yourself.

Years ago I made a promise to Donna to love (do what is best for) her in any circumstances—specifically “for better or worse”. Of course, like most people I never really believed there would be a “worse”. But like all people, I have learned there is.

Over the past few months my commitment to Donna—my love for her—has been put to the test. She has been developed “Charcot’s foot”, a condition that almost exclusively occurs in people with neuropathy—a lack of feeling in their feet—usually from diabetes or back injury (she has both). Simply put, the foot’s internal structure falls apart (actually, tears apart). The beginning of this process would send most of us through the ceiling in pain and we simply wouldn’t put weight on the foot—allowing it to heal before the damage is done. In neuropathy patients, the pain isn’t there, so they don’t know to stop walking on the foot (it doesn’t help when the doctor blithely tells you to keep walking on it because there isn’t anything really wrong with it).

The result is permanent damage if you are fortunate—and she has been. If all goes well, she’ll heal as her foot is (misshapen and weakened) but be able to walk again. Of course, that’s after being confined to a wheel chair for 3-6 months.

We are now about 7 weeks into that process. It has been very hard on her, and yes on me too. One of the hardest things I have experienced is the challenge to my love for her. Remember—that means doing what is best for her. She can do very little for herself. She can’t go upstairs. She can’t put any weight on that foot (and oh yes, the other foot is still healing from a fracture the same doctor said wasn’t there). That means that, in addition to the normal (rather extreme) demands on me, I also do most of the house work (well, what gets done anywayJ), errands, etc. Getting out of the house is hard for Donna, and it entails me loading and unloading the wheel chair at every stop, pushing her around, and getting her anything she needs while we’re out. Friends help when they can, but the nature of what needs to be done, time, and our location limit what they can do.

Of course, she is the one injured. She is the one with permanent damage and disability. Not me.

I’m the one battling the little things like impatience, frustration, weariness, fear, anger, and all the normal things that go on between husband and wife. And I’m the one wondering why I can’t love my wife better than I do. After all, I would gladly lay down my life for her. The answer is simple. Living for someone (loving them) is much harder than dying for them.

In the course of all this I’m learning things about myself I’m not jazzed about.

I’m learning I don’t love as well when love is hard as I thought I would.

I’m learning I’m more selfish than I thought I was.

I’m learning that living for someone (yes, even the Lord—see Romans 12:1) is harder than dying for them—and living for them is what actually shows love.

I don’t love as well as I want to. But I think I’m getting better at it. Strange that it took this to make that happen. But maybe that’s what marriage is really about– loving when “worse” comes.

Things Manufacturers Don't Think About

Automakers rarely think about the needs of the disabled. I was having difficulty getting in and out of our vehicles.  Once in, I struggled with the seats. A longer trip was nearly impossible because of the pain that being inside of the vehicle caused. It became obvious that we needed to look for a different vehicle. I needed a vehicle with a seat height between 30 and 34 inches off the ground. So I embarked with my computer and a tape measure to find an appropriate vehicle for people with needs like mine.

Approaching a dealership was an interesting experience. Salespeople were not prepared for what I was there to do. They were convinced they could talk enough to get me to purchase a car right away. They were sure that the car I was looking at was perfect for people with disabilities. But I was not interested in their sales pitches. I was there for research.

My first goal was to find the vehicle that was the easiest to get into and out of. There are so many obstacles.  Doors that are too heavy, dashboards that protrude into the opening, seats built for setting in, but not getting into, steering wheels that are in the way, and distances between the rocker panel and the seat.

One would think that a mini van would be best for a person with disabilities. The doors are large, with few barriers.  Not so much. The distance between the rocker panel and the seat of the Toyota Sienna was the largest of any vehicle I measured. Unless you are able to climb into the vehicle and move all of the way to the seat, it becomes impossible. A seat that is twelve inches from the edge of the rocker panel is impossible.  Manufacturers try to overcome that gap by adding running boards. This provides another step to help a person get into such a vehicle.  But if climbing is a problem, it only adds to the problem.  Most SUV's add running boards, thinking they are being helpful, but not so much.

I was really interested in a Subaru, but they are hard to get into. Even their larger model, the Tribeca, was a problem.  In fact, the Tribeca was more difficult to climb in than the Outback.  The Buick Acadia, and it's twin Mazda MX9 were easy to enter and very comfortable to drive.  Unfortunately it didn't completely work for me.

Hands down, of all the vehicles that I tested, the Toyota Venza was the best.  Seat height was great, door opening was accessible, and the smallest rocker panel I found (only six inches from opening to the seat).  The second best vehicle, for so many reasons, was the Ford Explorer.  As long as there are no running boards, the Explorer had some exceptional details, which made it a perfect fit.  The seats move back and the steering wheel moves out of the way.  The seat height is perfect to slide into, and the number and kinds of adjustments available made it the best vehicle for me.

I am not a in the business of recommending cars.  I can only relay what I discovered with my computer and tape measure.  I would be interested in your thoughts on this matter because people with disabilities need this kind of counsel to help maintain our mobility.