Out of Rhythm with Life

It’s all about rhythm baby.  It’s about the rhythmic, every day ebb and flow of life, it’s about being in the stream, the every day, everything happening around you life.  When you are in it, getting up, driving to work, coming home from work, you got life’s rhythm with the masses.  When you are out of rhythm, when you are out of the mainstream it’s like dancing alone.

When you are chronically ill or caring for the chronically ill you develop your own rhythm, too often separate and apart from the rest of the world.  You become internal, everything focused on the care and feeding inside the home.  Most of your time is spent dealing with what is happening in a very narrow spectrum of life, the person you are helping.

It’s hard to integrate into the ebb and flow of life when you become so single minded and all of your focus is so internal.  I, we, Marty and I don’t live in the regular world, we don’t experience the world in the same way we once did, we have missed much of life outside of our home and immediate circle.

Being out of that flow is isolating.  You see the world moving past you, you see other people living a life you wanted, you see other people living a full and healthy life and you can't help but be a bit envious.  When you are sick, when you are caring for someone who is sick, when you are out of rhythm with the rest of the world, it can be lonely.  

The cure to that isolation, that loneliness is simple, getting out into the world, doing things, talking to people, participating.  Easier said than done, easier thought than completed.

You find that change, small evolutionary changes are always happening in all of your old established groups.  When you are out of the loop and you aren’t living that change you get left behind, like you somehow missed the rapture and nobody told you.  It’s like a new complicated version of software has been introduced everywhere and you are still using version 1.0.

When you try and reintegrate into the familiar, those things you used to live, the changes that occurred without you makes everything and everyone unfamiliar; the unseen changes emphasize that you are out of sync with life.  It makes it a little intimidating to try and integrate back into life.

Personally  I love people, I love to chat,  and I love to listen to people;  but my view of life, my day-to-day experiences have become so narrow and restricted I’m not sure how well I relate anymore and I’m not confident in my ability to be, well, interesting.  I find getting back in the world daunting and a little frightening because I’m not sure of myself or my ability to relate anymore.

As a result, Marty and I do a lot more solo stuff and avoid too many things.  I know we need to be about more, involved more, it’s just hard to commit to take that step, to take that chance.  The fear of rejection, the fear of standing alone in a corner while the world keeps moving is , at times, too much to overcome.

Over the years Marty has helped me to understand why I do some of the things I do, why I feel some of the things I feel.  It’s a perk, most of the time, of being married to a very self-aware psychologist.  She taught me to look inward and figure out why I act the way I do.

I don’t particularly like what I see; I don’t particularly like the role of the home bound, introspective introvert.  I liked it better when we, emphasize the word we, were engaged, involved and participating in life.  If felt better to be a part of things and not on the outside looking in, and it always inspired confidence in me that if I was ever relegated to the corner watching that Marty would be beside me and I wasn’t watching alone.  I’m not good at alone.

It’s why I thank God for family, the comfort and the confidence of family.  It’s what makes family such an important aspect of recovery and life for the ill.  Family, on the whole, will always take you, will always talk to you and will always be interested in what you do, what you can say and how your life is rotating around the axis. 

Isolation, its part of the life, its part of our life.  Its part of the life of the chronically ill and those that care for the chronically ill to feel like life, friends and opportunities are passing them by.  There are just too many parts of that life, our life, that create barriers to participating in the flow.  

It requires courage, confidence, energy and time to break the cycle we create.  Breaking the inertia of the isolation requires strength and energy.  I’m working on it; I’m trying to overcome this, this one more barrier to normalcy.

It’s important to me, it’s important to Marty.

Yeah, We're Weird

We are a walking, talking, living anomaly when compared to the walking, talking, living outside world.  Inside our home, inside our family, the way we live, the things we do, our routine and rhythm are normal.  From the perspective of the outside world, from my own perspective circa 2004, not so much with the normal, from those views, our life is the opposite of the normal life.

I know Marty and I live an abnormal life because we used to be very “normal” and I recognize “normal”, for most of my life I was the very definition of “normal”. 

  

You know the old saw, look it up in the dictionary and you will find my portrait, my portrait from seven years ago, right next to the normal definition of “normal”.  We had two kids, two cars, a dog, a cat, a mortgage, two jobs, friends, family, conflict and resolution.  We had the typical middle-class life with the typical middle-class real and emotional junk.  

It’s amazing how fast the abnormal becomes normal.  It’s amazing how quick the adaptation process takes hold and what was once unbelievable, what was once completely and totally foreign,  becomes routine, becomes part of a new life, becomes who you are, what you are and how you live your life.

What we didn’t have seven years ago was a wheelchair, we didn’t have caregivers living in our house 24 hours a day, we didn’t worry about health insurance or the cost of health care, we didn’t worry about health in general, we didn’t have a potpourri  of medical equipment or a virtual pharmacy in our house.  None of that stuff can be classified as normal.

We didn’t have to worry about available handicap parking or if a building was accessible, we just didn’t have to do things that are now a routine part of our life, stuff that no one who understands normal would consider normal.  

Back when I was normal I didn’t like sick people, they made me really nervous.  I would never have thought that the life we now live, our new normal, would ever become everyday living for us.  I was afraid of hospitals, doctors and the people that frequented those places, you know, sick people. 

I was uncomfortable with disability; I was never comfortable with those afflicted with catastrophic, chronic illness, I never knew what to say or what to do.  I found it hard, uncomfortable to visit with clearly ill or broken people, I felt out of place reaching down to touch someone who was in a wheelchair, I was not comfortable with illness, certainly not devastating life altering chronic illness.  

The everyday things our family now experiences as normal life, checking blood pressure, monitoring oxygen levels, monitoring blood sugar, suctioning, and breathing treatments are not parts of most people’s lives.  Spending time surfing the web shopping for the right deals or the new device on the plethora of medical supply web sites becomes part of job.  Lifting Marty from her chair to help move her to another chair is not something I would have thought ever needed to be one of my skill sets.

If we are going somewhere for more than a few hours we take supplies, we take hygiene items, we take a nebulizer, we take oxygen, we take instruments and tools and the ever present wheel chair, it’s not normal, but it is what we do though, all the time.

Wheelchairs, using wheelchairs as a required means of transportation is not normal, figuring out how to maneuver a wheelchair through the maze of the world is not normal, advance reconnoitering to know if you can get a wheelchair into a restaurant, is not normal behavior.  It has become normal for us, it is now second nature, it is a part of how our whole family, me, our children, my family, her family, our friends, now have to live.

How do you get to where this is normal?  It’s really simple; you don’t think about it, you just do it.  You just haul the stuff, you do the procedures, you focus on the lifting, you let the wheelchair and all of the other pieces become vital tools of the house and eventually it all becomes part of the normal rhythm and ebb and flow of your life.

Our lives, the changes we have made, are a testament to the resilience and the ability of humans to adapt.   Marty adapted, I changed, the kids changed, Marty’s family accepted, my family accepted, we all evolved, just like other families who experience chronic illness or some other life altering event.  Human beings adapt, hundreds of thousands figure it out every day, thank God.

I can’t imagine living our life today with the eyes I had ten years ago, I couldn’t have done it, I wouldn’t have done it, we have all had our view of normal radically altered.  We couldn’t have survived without the ability to understand, to accept, to change, to evolve.  

I know our life today is not normal, it probably never was, normal probably only exists as a cultural figment of our own imagined ideals.  I know if there is a normal, we live outside the realm of what is generally accepted as normal, that used to frighten me, now, I just don’t think about it.