Those Who are With Us in That In- Between-Space

It also occurs to me that those of us living in between now and then with chronic conditions, or with conditions that look simple from the outset but then turn into longer term problems, that we are not alone. Sure, we feel the pain as the pain is inside our bodies or inside our hearts as we yearn for relief and respite from the daily struggles just to breathe pain-free. No, we are not alone. Our caretakers are there with us.  They feel our pain in a vicarious way.  They are touched by our suffering.

In my case, it has been my wife. Short of embarrassing her, she has been extraordinarily constant. She learned how to irrigate the ports either prior to leaving the hospital or on a trip back to ER. She counted the pills with great care, created a time line for when the next dose was due, was up with me at those times during the night or those other times betwixt or between when nature called. She provided a steady arm to lean on when I was too weak to walk on my own. She carefully measured output from the various drains that hung like out of place limbs from the trunk of my body. She charted them for the physicians. She prepared meals that she knew would likely help in the transition to new and different ways of eating.  She bought things that she rarely bought before because they would help in the interim.

She wept in the ER at the notion that her beloved was to have one more surgery and so soon after the first. I still hear the thud of her notebook and other things when the physician said, "This is an emergent issue and it must be removed. We are admitting you tonight and putting you on antibiotics immediately."

I saw the fatigue in her face and body, the fatigue that goes with being a caretaker who lives in that in between space.  I knew she was growing weary from that look in her eyes, but she never stopped. On one occasion, as she was collecting fluid from one bag, she emptied it as normal, but she forgot to squeeze the bag. It is a vacuum that works in a vacuum sort of way to help drain. I reminded her as she put the plug in the bag, "You need to squeeze that," and she apologized, and I assured her that that was ok, that she was doing a wonderful job of taking care of me.

That is only one example.  There are more.  The point is simple.  Our beloveds live in that space in between.  They know the healthier person from back then.  They long for that health to return whenever that will be.  If you are fortunate, as I am, they walk with you from now until then.  A curiosity is her prayer, "Lord, please be with us as we walk these days."

Some days living in between is a walk, somedays it is a trudge, and somedays it is dragging ourselves inch by inch.  And, when we wake up in the morning, we oftentimes do not know what that day will bring, a walk, a trudge, or a drag, or maybe just sitting in the recliner and staring at the television screen.

I am mindful of the people whose faces I can still see from yesterday's post.  There are multiple tragedies in that list.  Racism and discrimination are but one level of tragedy, especially as it comes from the people and the institution whose job it is to insure that farmers get their fair share of funds, advice, loans, debt relief and write-off, and the like.  Another level of tragedy is when the pressure is so extreme, when their partners see no hope for a brighter day, when they opt to leave because they see that as the only way out.  I have talked to some of them. Their regret is immense. They can recount the days and the nights of despair when hopelessness set in and would not go away.

Yes, there is a price for caring and for care-taking, long term and short term.

For my wife and me, the battle of the in between has been just a few months. For those in that list, their battles were years and years and years.

There are more stories, but for now, simply put, I am grateful for the helpers, for the caretakers, for those who put their lives on the line to live in that space between, for those who remember back then, live in the now, and yearn for tomorrow and relief. For them, I am truly thankful.

Living in Between

It has occurred to me the last few days that I am living in that in-between space.  Perhaps you know what that looks like and feels like. I do not feel as good as I will some day down the road, but I am not feeling as awful as I did a couple or so weeks ago. Behind feels like yesterday and tomorrow feels like a long way off down the road.

Some people do not get to experience the living in between. Whether it is their health, the loss of a child, or the loss of someone they love, this is as good as it gets.  When we're in that space of it's as good as it gets, we wrestle with how to do life when change is not likely to happen. I have two friends who have experienced amputations.  I admire their courage in recuperating from the surgery, stabilizing, and preparing for the prosthetic and then adjusting to life with the artificial limb. They will never have two legs again, but then, again, living with one is better than a diseased two, so they decided. Or perhaps for all of us who have experienced unspeakable grief, our hope is for a tomorrow that does not have grief and loss in it, and that may just be in eternity.

Another challenge is looking in the mirror or into the mirror of my friends faces, eyes, and words.  "You look great," I hear these days.  So, there is the gap between how I feel and how my friends, and even my family, say that I look. I am learning to pace myself with both OTC meds and with work and other activities. A long day at the desk or out and about must be paid for physically and emotionally tomorrow.

Such it is with living in that space in between what was and what will be.

I am pondering other friends living in between. The farmer who lives in between, knowing that he has a case in court in which he could get clear title to his land, but he must wait, and wait, and wait. A farmer who works the land because he can, and he does not know if nor when they, whoever they are, will come and demand its return to them. Or another farmer who remembers what it was like to farm and to do well at it until the FSA office did its thing, denying loans, waiting forever to approve them, and on and on, and knowing that he'll never farm again.  The farmer who knows that his crops are growing and that they are looking good in the field, knowing that rain, too much rain, is coming.  Then he'll know how much is in the field to be harvested. Or the son of deceased parents who loved the land and died protecting it.  He lives between then and what the future holds, and he does not want to talk about the now looking back to the then and its pain and suffering for him and his parents.

Shoun and I are working hard on the documentary. We want it to make a difference. We have heard stories of unspeakable grief and loss of land, livelihood, and identity.  We want to go to as many places as we can to show the film in the hopes that it will make a difference in how African Americans are treated in the farming bureaucracy. This is now and that is then.  We live in that space in between.

I am by disposition and choice a man with goals and objectives and to-do lists a mile long for each day.

For now, though, my to-do list contains a reminder from family and friends.  That reminder is "slow and steady wins the race even when there is no race."

Living in between means that I feel better than over the past few months as there are no drains coming out of my body.   I sleep in my own bed and am no longer taking narcotics. I just have to get used to the notion that I may look better than I feel. That validation is not painful but there is a little irony in it.

I am waiting for tomorrow. Patience may not be my first option, but I'll surrender to it in order to get there, whenever it arrives.  Maybe I'll be surprised.