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.

A Circle of Caregivers

I sat in the parlor of our church listening and talking, mostly listening to the stories of the other family caregivers.  We had gathered together to talk, to listen, to think, to find ways to help those who were providing care for loved ones. 

There were women who had seen fathers and husbands through the worst of dementia, who had cared for them as they slowly passed.  There was a wife and daughter of a husband and father who had moved to a care facility.  There was the wife who was just really starting on her care giving journey as her husband was slowly but surely needing more and more help.  There was the niece who had willingly taken on the job of caring for her aunt and there was me.

Everyone had unique stories, unique but the same in so many ways.  As I listened to them talk of the fears, the worries, the fatigue it all sounded so familiar, spoken by different people at different stages of life, all in the same storm.

We talked about health care, embarrassment, ignorance, unknowns, fear, patience, and love.  Each of these people, as they spoke, as the tears came, did not have to profess their love for their spouse, father or aunt, it was assumed, the love, the respect, the loyalty was lived through their dedication and actions.

The stories were poignant, especially as some in the room talked of coming to the decision they were no longer able to care for their loved one alone, at home.  Those painful decisions, to move their husbands to a care facility, were largely made out of the need for survival for both the caregiver and their charge.  You could tell those decisions were painful; the women felt they had not made the best decision, but the only decision remaining.  

That’s the real conundrum of caring for people with long term, descending ailments, there are no good decisions, there are no right decisions, and inevitably you end up making the only decisions and those decisions invariably kind of suck.  Making those kinds of life altering decisions is one of the most stressful, heart wrenching parts of care giving.

Then we talked about the loneliness.  Maybe lonely isn’t the right word, it’s really more of a feeling of isolation from the normal ebb and flow of life.  When you work, when you fully participate in the life flowing in the outside world, you are part of the world, part of the community, experiencing the rhythm of life.  When your life revolves just around what’s inside your home, what’s inside a nursing facility you don’t experience life in a normal way, you are set aside, you are isolated.

So many of my own relationships revolved around work and Marty was the social secretary in our house, she was the one in charge of most of our outside experiences.  All of that went away when I quit working and Marty had the strokes.  I have been beached, out of the ebb and flow.

After the strokes, after we came home for the last time, everything became about Marty, about her recovery, about what happened behind the walls of our house.  The walls then become something of a fortress, you forget about what’s outside, I only saw the outside through the perspective of how it will affect the person I was most responsible for, Marty.

Remarkably I don’t resent any of that.  I’m as surprised by that as anyone, I’m not the self-sacrificing type.  I’m selfishly doing what I was called to do; I’m doing, regardless of the repercussions, the most decent thing I’ve ever done and frankly I’m proud of that.

I think everyone in the room that evening would agree with that.  From the daughter to the aunt to the spouses, I suspect they all confront the pain of their families’ illness every day.  Those that have lost people, still deal with the ramifications of those tragedies every day of their lives as they try to re-establish themselves in that rhythm of outside life.

The talk helps; the communion of these souls satisfies a part of my being.  There are no answers to most of the issues, most of the issues are part of the more unseemly part of life that some of us face too early in our lives, some face for too long, same face too often.  

I hope we bring this group back together in the future, not to look for answers, not to bitch or wax nostalgic, but to simply share the lives we have in common.  That’s what so many living more normal lives do every day.