We have all heard the saying "take it with a grain of salt." This adage means to look at something skeptically, or to not take something too literally. Well that is how I am prefacing this current blog post - each of these posts are developed from thoughts, ideas, and conversations that I have had not just within the four walls of my own home, but with many other people from around the world. Each moment, each encounter, each short interaction can bring to life a new awareness, another path for a new post.

So why, do you ask, is this important to you as a reader?

Well, it is important to make that statement because Frank says it is.  His observations, our conversations, sometimes spurn a new post, article or blog.  However, not all of them come from our life, and for that reason, I am posting today, and asking that you take each update with a grain of salt.

Recently, I posted about some truths regarding brain injury.  Although many truths come to light in the life and caregiving to a survivor of a brain injury, not each truth pertains to each person.  Brain injuries, just like people, are different for everyone.

For us, life has been like a variety show - one day is never like the one before it.  There are days filled with highs, and days when we hit rock bottom; days that have order and predictability, and days that are a field of chaos.

And as I have always said, it is how we respond to those days that makes a difference.

Frank reads each post now - in the beginning, in fact for most of a year, he did not.  I posted vigorously about recovery and pain, paths and hopes.  As he became more aware, I tempered those posts, knowing that his feelings and privacy mattered, even in the midst of educating others and bringing awareness.

We are honest and open about our life, our struggles and how we jump the many hurdles that occur in our day-to-day living.  But not everything that is written has to do with our struggles - the struggles within the brain injury community are vast, but they are not all ours.

I do my best to honor the many families and friends with discussions about topics I know to be important to them, even if they do not pertain directly to us.  I am grateful that my education and clinical expertise falls within the realm of brain injury and neurological deficits.  It allows me to research and understand the questions that are posed to me each day, and bring some level of enlightenment to others living with the same issues.

I will continue to post about the trials and tribulations of our life, but know that not every post is about OUR life.  Ours is not the only life touched and hardened by brain injury - we have many others walking with us, trying to find the best way to navigate the journey.

As always, thank you for your support and comments. Feel free to email your questions to info@lisabethmackall.com or text us at 651-319-1916.

Una Stamus

 

Has anyone ever asked "How are you?" and you reply, "Fine thanks. Why?"

Well, you look tired.

Uh oh, it is the caregivers tell - when people not living in the world of caregiving start to ask questions, and may not believe you when you tell them that you are fine.

It is when what is on the inside starts to show on the outside.

Few individuals understand the true nature of caregiving, especially caregiving for an individual with a brain injury.  Although people can empathize with the situation, can anyone truly understand the changes that have occurred not only for the individual with the injury, but for those around the now trying to live within their universe.

The depth of that understanding is beyond most people.

I have found that there are many truths to caregiving, but for right now, we can talk about some of the harder truths to brain injury.  These truths live with the caregivers at all times, and although there are ways to break from these truths, they always come back to the center of where we live.

1. Brain injury can change a relationship at the core which can lead to a completely different relationship than one that was forged prior to the injury. This truth is the cornerstone of the lives of those living with an individual with a brain injury. Although relationships can survive and sometimes thrive following a brain injury, relationships are invariably altered when one person's brain, and often their personality, are no longer what they once were. Learning to navigate a life with someone "different, but the same" can be very difficult, and often needs many people supporting both individuals for the long term.

2. Frustration and sadness occur in both directions.  This truth is not meant to be a sad revelation for the masses - but it is want to bring to light that moments of sadness and loss are not only felt by the partner, friends and family of the individual with the brain injury.  The individual themselves often feels great loss.  This loss can be the loss of identity, jobs, partners and family that no longer understand the "new me." Many times the loss is so great that individuals without support turn to self-destructive behaviors, and further lose connection with their former lives.  But this does not have to happen - understanding by those around an individual that has survived a brain injury can be the leading cause of success and thriving following the injury.  Learning how to navigate new territory is not impossible.

3. Life is not over, even on the days you feel you can't go on. Trust me, this is the biggest truth of them all.  We all have days when we feel we cannot go on with this life.  And maybe you cannot go on with the way that things are today. Developing a network of people, professionals and confidants that can allow you to all through the rough days and the hard times is imperative to success.  Not everyone can stay in a relationship following a brain injury.  Not all relationships survive a traumatic event.  But individuals can live successfully when you use those around you to ensure that everyone is working together for the best outcome for everyone.  Life after a brain injury looks different for everyone.

Although these three truth are not the only truths, they are the truths for someone today, and probably for someone tomorrow.  Brain injury is life altering for caregivers and survivors alike, and caregivers carry new burdens that change who they are inside.

And what is on the inside is often not very pretty.

It's held tight against the chest, not for others to see.

But sometimes, people begin to notice what is on the inside, showing up on the outside.

Don't be afraid to let it show.  The insides are what are important anyway.

 

 

Truly this question is not for all of you, but sent to me from many of you.

I am here, but not HERE.

I am being focused, but differently.

I am present, but absent.

But I am okay, and thank you for asking.

I have followed the paths of many "life-stress" bloggers such as myself.  People that had no plan to be online, writing about their lives, their pain, their worries or their fears.  People that end up pushed to the front of the line for whatever trauma may have hit them, and at the front of that line, they begin to speak.

Some speak to ask for help, while others speak to communicate.  Others speak out of loneliness and out of fear.  I found myself speaking to inform, and that information posting led me to the path of sharing.  I believe that my sharing saved my soul from infinite pain; the support and kind words gave me what I needed to wake up each morning and get on with what I had to do.

Like with everything else, life does go on. And eventually the bloggers may find themselves over it -  the usefulness of the blogging fades away, and the posts begin to space out, longer and longer time between each one, until the blog fades away.

I haven't faded away, but I did fade.

Too many things happened in too short a time, and even I, the one who thinks they can handle anything, couldn't handle it. Too much for me, too much for anyone.

I am here, and I am back.  I will be blogging more about brain injury, our life and stories, and where the world is going with individuals living within this new life. I have more speaking engagements lines up, I am open for meetings and appointments, and I look forward to hearing from all of you.

Thank you for your patience and your worry. Una Stamus