Our Life – Blog

The time has come again to meet the holidays head on - as the holidays approach, many families that love an individual living with a brain injury being to worry about how to navigate the season.

Parties, shopping, money worries and get-togethers can disrupt a carefully balanced scaffolding of organized life that takes little to push over. The time and planning that it takes to hold life together after a brain injury is extensive - that planning often involves the juggling of so many different things that it doesn't take much to break it apart.

This known worry can cause tremendous stress for everyone in the family, and by trying to please everyone, can often just cause the breakdown that was feared the most.

Caregivers often find themselves in what feels like a no-win situation - do they try to attend some of the parties and fun activities that come with this time of year, or do they sacrifice this time and hold together what took so much time to build?

It doesn't always have to be a complete yes or no, there are ways to still  enjoy some of the parties and festivities without completely ruining the days that follow with a fatigue meltdown.

  1. Remember to set aside down time - Just like any other time in the day, if there needs to be down time as part of a regular schedule, it should continue during the holiday season. Although some flexibility may need to occur with the timing of the breaks, when adding increased socialization, noise and stimulation, it is always good to plan ahead and ensure that there is plenty of quiet time to balance out the increased noise.
  2. Don't try to do everything - Remember that you wouldn't normally pack in three or four appointments in a day, so why would you add in several parties in a day? Space out events, and find ways to be included in smaller events that won't take so much brain power to deal with.
  3.  Know that it is okay to say "No thank you" - Not everyone knows the impact of changes to the daily schedule for someone that lives best when the schedule stays consistent. By maintaining as normal a schedule as possible, life will not erode into fatigue and anger.

Be okay with using your own judgment when looking at the holiday schedule.  Only you know what will work and what won't work. It is up to all of us to ensure that the holidays remain a time for celebration and family, even for those that cannot tolerate a lot of chaos.  Keeping party times shorter, events spaced out, and ensuring plenty of downtime can create a holiday time filled with fun.

A Solo Partnership - those words do not really go together well, do they?

I have been mulling over those words in my head for over a week and it was finally time to put pencil to paper (or fingers to keyboard). When you see those words together, what does it make you think of? What can you imagine someone might mean when they string them together?

How can you be both solo and a partner?

This is an entirely possible situation, and one that is talked about freely in support blogs and small conversations between those that understand. Relationships that form as a partnership can somehow fragment into a puzzle, one in which the while picture is present, the pieces just don't seem to fit together the same way anymore.  What you get is a picture that looks normal, but doesn't quite work together the way it did in the past.

I often refer to my conversations with families and spouses in my blog that live with a loved one that survived a brain injury.  The conversations can go in many different directions, but one of the most common places they journey is to this feeling of aloneness, of being part of a marriage that is lonely.

Now, this isn't just a "brain injury" issue.  I think many of us know plenty of marriages where one person has checked out.  It happens - people get bored, complacent, and want to move on.

In the world of brain injury, both individuals may be present, but may not be able to be engaged in the true sense of a partnership.  Cognitive limitations, emotional detachment, fear, anger or memory loss can erode the daily interactions and play that occur when people are in a partnership.  Changes within conversational structure, patterns of interaction or just the difference in ones ability to help and plan throughout a day can impact a marriage.

These changes can go unnoticed by the injured partner, or if noticed, may be difficult to adjust. The caregiver may be able to bridge the gap between the two individuals, but eventually, a continuous pattern of compensating for that gap in communication and partnership becomes too much to continuously cross - and fatigue seeps in.

Partnership by definition needs two or more to participate - when one cannot participate due to a brain injury, the partnership becomes a solo pursuit of determination to keep it together.

A solo partnership cannot last forever.

So now you are asking yourself why bother? What stay around? Why would anyone stay when staying just makes you feel even more lonely than being alone?

I asked that question of those around me, and the answers that I got brought me to tears, and I realized the answers were true for me as well. When asked, why do you stay I am told:

I stay because when she laughs out loud in that way, I remember all the times we laughed together.

I stay because when he gets that bossy tone of voice, I remember all the times he would tell me to get things done, and give me a quick kiss and a smile as a thank you, and I knew that I would do anything that he asked.

I stay because when he thinks I am not looking, I watch him close his eyes and smile while listening to his music, and he looks just like he did before he got hurt.

I stay because sometimes, he looks at me, and really sees me again, and time goes away for just that second, and I know that somewhere he is in there.

I stay because he didn't ask for this, and for better or worse, we will figure out a way to make it work. And sometimes, he remembers to tell me he loves me, and if he can remember the love at those times, so can I.

A solo partnership - not what anyone has asked for, but what some have been given. The emotional strength it takes to survive is astounding, but the strength in those that work through brain injury recovery is equally amazing - and sometimes recognition of the strength in one another can be the bridge to carry that partnership again.

* It is important to both Frank and I that I are clear that not all conversation, situations or topics are part of our life and reality.  Each brain injury life is different, and with that, it is important to know that this blog reflects many families with brain injury, not just ours. In order to honor Frank, I want to be clear that when speaking about relationships and trials, I am not always referring to our family.

 

 

I am wearing dark clothes to try and blend in. I am fairly certain anyone could figure out that I am not a real cop, but at least I can sit in the front and pretend I know what I am doing.

Tony jumps in and gives me a lesson in where things are, and what I should not touch.  I find myself fascinated by the set up, and paying more attention now, when it feels more important.  I learn how to release the shotgun that I did not even know was behind me.  I joked with him about how my daughter will kill him if something bad happens to me tonight.  He looks at me and says "If something bad happens to you tonight, something bad has already happened."

True statement.  The protector is in force, and I am certain that I have not felt safer today than I do right now.

The sun is going down, and true to his warning to me earlier in the day, it is getting cooler.  The window is down as we head out of the lot, out to the streets of St. Paul.  I have no idea what I will see tonight, or how this will play out.  I notice quickly that the radio is on in the background, and that I can hear the calls, difficult for me to understand, not having quite the "radio ear" that Tony does.

As we begin our night, I try to focus on understanding the radio - I get the general concept - dispatch calls an officers number, they respond, a call or update is given, and the officer responds.  I find myself having to listen closely, while Tony can carry on a conversation while listening at the same time.  I notice this especially as we are chatting and suddenly Tony pauses, brakes hard, turns the car around and is move quickly down the road.

I have no idea what just happened. I find myself watching streets fly by, wondering what skills must be developed to do the many things I am observing happening within seconds - the response, the radio back, the update, the computer change and the driving, all in seconds of one another.  We pause at lights to ensure we are safe to cross, and I marvel at the cars that seem oblivious to the lights and sirens.  I laugh to myself as I hear in my head all of those times Frank has complained about the drivers around him.

We arrive on scene  and pull up alongside his partner, who had a car pulled over and was speaking to a female outside.  Tony stepped out of the car, and said "you can come outside" as he shut the door.  Come outside?  Really?

I sat for a minute and checked my surroundings.  Sitting at the driveway of a gas station - check.  Another squad sitting next to me with an officer walking towards the stopped car - check.  People coming and going at the gas station - check.  I decide to get out of the car.

I get out and quietly close the door.  I lean against it, trying to look inconspicuous. The other officers had the two males on the ground, chatting, and actually laughing at moments as they talked about the weather, the night and other inane topics.  What a fascinating shift of thought this is - two men that could be under arrest, yet they are casually chatting, waiting their turn for "review" in this situation.

This situation ends fairly quickly following a plea by Tony for this young woman to change her life path, as he offers his card with his number on it.  He tells her more than once that she has a life, a better life, waiting for her, if she just makes different choices.

I am sure he has seen this many time before - I wonder how many times they actually change course, and heed his advice?

We return to patrol, driving by areas and stores as Tony relays different events that have happened in these locations - drive by shootings, gang violence, and later, as the sun goes down and darkness sets in, the location of the killing of two St. Paul officers. I freeze those thoughts in my head, knowing that of all the things I hear tonight, those statements will resonate with me the longest.  His voice changes as he tells me briefly about both incidents, and I flash back to my "almost" in our lives.

The radio continues to chatter as I learn the streets, switching back and forth, stopping again to back up his partner after a car is stopped in an individuals driveway.  After some car searching and discussion with the individual, his partner gives this man a warning, and some advice to take care of his family by fixing his car and making sure his children are safely secured. An act of kindness, when a break meant more than a ticket.

I begin to relax as I become accustom to the brief stops, Tony chatting with individuals and kids in alleys, many who remark "Hey, you know you have a headlight out?" This becomes the fun of the evening to see how many times people will tell us this - it goes on all night.

As we make our way down another side street, I think I hear "shots fired" go out over the radio.  The immediate reaction by Tony and the way we begin to move through the streets indicate to me that I have heard correctly.  As we hit a main road, and the lights change as we roll through them, I watch cars part as we head towards the incident.  The car has been lost, and the officers are trying to get it back in sight.  It is found again - "We are going to be right on top of it" and there we are.  Multiple squad cars as we cross into the scene with officers out and guns drawn. We pass to the right and cut around behind the other cars, ending up in line to the far right of the situation.  Tony jumps out and slams his car door, walking to and officer to our left as another is shouting instructions to the driver of the car in front of us.

For a moment it seems that everything slows down - I glance over and see multiple officers next to their cars, as another officer walks to the right side of our car, and stops next to my door.

Holy shit.  Holy shit.  I am talking to myself in the squad car because I truly cannot believe that I am sitting here watching this unfold before me. The man in the car has complied with instructions and is being moved behind me out of sight, as the other man in the car is now walking backwards toward the squad cars.  As all individuals in the car are removed, I look around and see the relaxation in all officers, the ratcheting down of stress, and the return of guns to their holsters.  The air clears in the sense that there is a palpable change in the air pressure around this place, as officers greet one another, ask about bids, shifts and dinner.

This is their life - one minute they are in a situation that could erupt in gunfire and death.

The next they are chatting among friends, commenting on the incident, slowly peeling off to go back to their designated sections of the city.

I feel the adrenaline leach out of my system, and I get cold.  I have been in enough trainings on trauma and stress to know that this is what I do when I crash from a stressful situation.  I am thankful for the multiple layers of clothing and the hand warmers I have tucked in my pockets.

We leave the scene to return to our drive.  Tony and I chat about the event, and there are so many strings and threads that link this situation to other events that have happened in the area, it is almost impossible to follow.  But these guys know - they understand their city, and as they work, they learn the individuals that live here, and how they interplay with one another.  Whether for good or for bad, working on the East side means getting to know the people here, and being prepared to do what is right to keep them safe from those that mean to do harm.

Eventually we break for dinner, which means a visit to the department.  I am grateful to get up and stretch my legs, even for a bit. It is interesting to hear the chatter in the room, as other officers work on their computers, and relay information about their nights.  I am sure some of the chatter is tempered due to my presence, and I try to not interfere - but I know my presence changes the dynamics, whether I want it to or not.

I am not one of the them, I have been given the chance to observe.  Only those chosen truly get to become part of these teams.

We head back out into the night, and it feels different.  This is the first cool night of Fall, and people have gone inside. After another back up call to "chat" with some kids that were checking on cars ( and having Momma come outside to lay down the law) the night begins to lose momentum. I find myself starting to get tired, and realized that it is close to midnight already.

How did it get so late so fast? How had six hours gone by already? I felt like I could do this all night - the constant hope that something else will happen, that there will be another call, was like a drug. I finally realized that I needed to get home, that it was time to cut myself off, and to let Tony have his real partner back.

I didn't want it to end. It was addicting, that any moment another call could come through and we would be racing to someone needing assistance, whether it be civilian or sworn, we would be there.

I headed home, knowing more than I did before, but understanding that I was lucky tonight - as far as I knew, everyone would go home safe.  The twenty-one on duty would return to their families, hopefully without additional baggage; the load carried by these brave men and women is heavy, and time can take its toll from the things that they see.

They see the things that none of us see - and it hurts them. They bury it deep, and do their best to move on, but over time, unless the scary horrors of real life policing are dealt with, they can take a good strong officer out of commission.

It happens when the heroes are expected to be invincible.

No one is invincible.

After a safe and good nights sleep at home, I woke up to find myself feeling pretty cruddy.  Lack of sleep maybe, but also the after affects of adrenaline dumping over and over. I felt physically ill from the highs and lows of the night, and how often I swung emotionally during my time on patrol. It was an amazing realization to know that officers do this night after night, putting their bodies through a marathon of emotion and chemical imbalance, only to get up without enough rest and do it again the next day.

But I understand now why they do it.

As Frank woke up and walked across the room, and went up to him and hugged him.  I put my head to his chest, and tears began to slide down my cheeks. "I'm so sorry" I told him.

"For what?" he asked.

"I get it, I understand what you have lost. And I am so sorry."

I understand the kinship, the emotions, the risk, the elation of being part of the law enforcement family. My brief venture into the night brought with it a glimpse into the why they stay, why they love what they do, and why when it is taken away, they grieve.

My heart hurt anew for Frank; almost more painful than anything else I have felt for him.

I get it, and it sucks. To lose that is devastating.

I get it now.

I will forever be grateful for my glimpse into the night, into the darkness. I am safe at home, knowing they, the men and women of law enforcement, are out there. And for those that have been in the game and were taken out, my heart hurts for you. There are no other words.

Thank you Tony.