Life—the Divergent Highway

 

Life has been described in poetry and song as a road, journey, voyage, marathon, path, passage, course—all words used to indicate that in life you are traveling somewhere, usually with a destination in mind. As a sibling growing up with a brother who had a significant disability, my life’s destination has changed more times than I can count. This is not only because I am a sib, but also because I am a trauma survivor (which happened to be a direct result of being a sib). My destination usually included something related to trying to make sure my brother and parents were happy. I believed that was my responsibility.

I am now in the process of reclaiming my authentic self—the feisty little girl I was before my brother came into the world and our family dynamics permanently changed. I had to remember who I was born to be. Who I am at my core. What are my values? It’s not an easy process. It’s another piece of that journey, road, marathon we call life. As I had some new revelations about myself today, two things popped into my head: The song, “Life is a Highway,” by Tom Cochrane and the poem by Robert Frost entitled “The Road Not Taken.”

Just the title of Life is a Highway and the catchy tune make me feel energized, but in reading the lyrics I found a couple of sections that were very applicable to me as a trauma survivor.

“Sometimes you bend, sometimes you stand
Sometimes you turn your back to the wind
There's a world outside every darkened door
Where blues won't haunt you anymore
Where the brave are free and lovers soar
Come ride with me to the distant shore
We won't hesitate, break down the garden gate
There's not much time left today.” -Tom Cochrane

As sibs, we have always been the flexible ones. The ones who fit in so our sibling’s special needs could be met. We felt alone, sometimes depressed, sometimes angry. We were strong and brave, and we didn’t show our true feelings because we were trying to protect our families from more pain than they were already experiencing. (It wasn’t until we could become aware of our own individuality that we would be able to stop hesitating and break free of the secrets that prevented us from truly embracing life.) We felt shame and guilt, and didn't understand why, but we kept going.

“There's no load I can't hold
The roads are rough, this I know
I'll be there when the light comes in
Just tell 'em we're survivors.” -Tom Cochrane 

Siblings of brothers and sisters with disabilities often carry the load in the family that others cannot. We are the strong ones. We are the survivors.

“There was a distance between you and I
A misunderstanding once
But now we look it in the eye.” -Tom Cochrane

Trauma often causes us to separate ourselves from others. This is how we protect ourselves from being hurt. It's a preemptive strike--if we don't get close, we can't be hurt. Or, if we hurt them first, they will leave and can't hurt us. Sibs often suffer a lifetime of relationship woes. When we come to understand the depth of our trauma and the walls that we built to protect ourselves, we begin to learn what we need to do to break down those barriers and connect with people again.

Then, as I thought of starting to connect with people, in addition to recognizing that I had protected myself from close relationships, I also remembered how I had grown up to be a people pleaser. I was the peacekeeper. While this was looked upon as an asset within the family, the price I paid for this was  the loss of my own identity. I did not know myself. I was a chameleon. I could read a room and behave accordingly in any situation. I didn’t really know who I was or what I wanted from life. I struggled to make decisions because I weighed every decision based on what I perceived others might think, as though their opinions were more valuable than my own.  Pondering on this brought the following verse to mind:  

“Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;” -Robert Frost 

Life is filled with decisions and oh, how I have agonized over most of them! In the brain of a trauma survivor even simple decisions can feel unsafe and scary, like making a decision will be the “end of the road.” As I have learned more about who I am as a person and what I really want out of life, I have become a more independent thinker. Decision making is still challenging at times, but it doesn’t hold the same level of worry about outside judgement as it did. I am forging my own path:

“Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,” -Robert Frost

I know that I am not the first to travel this path as a sibling but I will travel it in my own way. I will be more vocal on not only on speaking my own truth, but also helping other siblings find theirs. And on my highway of life, that will make all the difference.

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

  

https://genius.com/Tom-cochrane-life-is-a-highway-lyrics

 

From The Poetry of Robert Frost by Robert Frost, edited by Edward Connery Lathem. Copyright 1916, 1923, 1928, 1930, 1934, 1939, 1947, 1949, © 1969 by Holt Rinehart and Winston, Inc. Copyright 1936, 1942, 1944, 1945, 1947, 1948, 1951, 1953, 1954, © 1956, 1958, 1959, 1961, 1962 by Robert Frost. Copyright © 1962, 1967, 1970 by Leslie Frost Ballantine.

 

Blog Healing Journey-- Letting Go of the Past—I am Sorry That…

Letting Go of the Past—I am Sorry That…

Is it guilt or regret? Things we think we should have done, or things we did that we think we shouldn’t have done? Wrongs we believe were done to us? Are we feeling sorry for what happened to us or sorry for what we think we missed out on?

There is no right or wrong when it comes to our thoughts and feelings. It is less important what those thoughts are—you don’t need to compare yourself to anyone else. The most important thing is that you write your thoughts down and allow them to come out of you—come out from where they have been pushed down deep inside. Those thoughts became feelings that have been eating you up, wounding your soul.

Step 4 on the healing journey is “I am Sorry that…”

·           I didn’t love you.

·           I didn’t take care of you.

·           I worried about other people more than you.

·           I let you be the victim for so long.

·           I didn’t protect you.

·           I told you there weren’t any other choices.

·           I damaged your physical health by trying to cover up your pain with food and drink.

·           I damaged your emotional health by trying to hide behind false pleasures instead of experiencing and sharing your true feelings.

·           I compromised your relationships by putting up walls and pushing away people who tried to get close to you.

·           I wounded you emotionally by letting you believe you were responsible for everyone else’s problems.

·           I told you weren’t enough.

·           I told you that you had to be perfect.

·           I told you that you weren’t lovable.

·           I told you to be afraid—that others couldn’t be trusted.

·           I led you to take your pain out on others through judgement and anger—the very things you despise.

·           I dragged you from one painful situation into another one.

·           I did not see what was happening to you sooner.

·           I didn’t allow you to find your true self.

·           I stopped you from meeting your goals.

·           I wasted so much of your life.

After writing out your own thoughts of sorrow, you will be ready to move on to the final step in this letter that releases us from our past. I hope each week, you are allowing these painful feelings to come to the surface, so you can examine them, accept them, experience them, and then let them go. 

Imagine trying to hold a beach ball under water. It just keeps popping up—over and over. It fights to come up again and again, no matter what you do to hold it down. Now imagine your painful feelings are that beach ball. They will keep popping up, fighting to come to the surface. When they come up, instead of fighting and pushing them down, we need to recognize them, accept them, experience them, and then let them go. When we are able to do that, those feelings can no longer hurt us.

There will be one more week in this phase of letting go of the past, but it will not be the end of the process. There is so much more to come as we start looking forward to the future.

I’ll see you there!

Paula

Blog Healing Journey--Letting Go of the Past—I Wish

I don’t know about other sibs of people with disabilities, but as a child, I had a vivid imagination. In those moments I had to myself, life was wonderful! I was beautiful. I had lots of friends. I went to parties. Life was peaceful. There were no fights—everyone was happy. It was the stuff of a Hallmark  movie.

Whenever I had the chance, I took long walks alone, daydreaming, singing, giving speeches to adoring crowds who were hungry to hear my words of wisdom. I started million-dollar businesses from the crafts I made using sticks and flowers gathered on my walks.  As I did the dishes and laundry, I was the sexy lead guitarist and vocalist in the next hot rock band.  

Truthfully, I was afraid. Afraid of adults, afraid of most other kids, afraid of being noticed. After all, attention might be negative attention. That meant humiliation. I had enough of that every day anyway. Other kids picked on my brother, then me. I was prepared to run and hide at all times.

I was lonely. I had a few friends, but not many close ones. I lived in my dream world as much as possible. The real world betrayed me. It robbed me of my childhood.  My fantasy world was a well-kept secret.

The childhood Paula wished for a lot of different things in life. I wished for big dreams, fantasies—"somedays.”  Fantasies were temporary protection from a cruel world, but now I need to learn how to change the emotions that damaged me. Someday is here, and it’s time to get real. Time to choose my emotions and live a proactive life.

The next step and third paragraph in this trek, Letting Go of the Past, is “I wish…”

I wish…

·        That my my brother and I could have played together, like kids do.

·        That my brother wasn’t disabled so we could have communicated at a deeper, emotional level.

·        That my family had been able to share and show their feelings more easily.

·        That I had spent less time making other people happy, and more time doing what made me happy.

·        That I felt comfortable making friends, instead of building up walls whenever I meet people.

·        That I didn’t have to work so hard at being happy.

·        That I wasn’t so critical of myself.

·        That I could let myself cry—really cry—without shutting if off. Just let it out until it’s done. Truly experience the full emotion.

*The following wishes are the ones I have never shared publicly. I tread lightly with these thoughts. They seem dangerous to me. These thoughts cause me to worry about judgement from others, including and especially, from other sibs:

Here goes!

I wish…

·        That I felt safe to speak my truth. That I didn’t feel like I would be a monster if I were to say what was in my mind.

·        That I could understand how some sibs can say their disabled sib is their best friend. Really? To me that is unthinkable. I loved my brother very much, but best friend?

·        That the painful parts of my childhood didn’t overtake the happy parts in my remembering.

·        That I didn’t feel ashamed of my thoughts and feelings about my disabled sib and my experience of growing up with him.

·        That I had had more compassion for my parents.

·        That I had not blamed others for my problems.

·        That I was a better person.

This letter is soooooo draining. Who knew emptying your soul would suck all the energy from your body and mind? Soon, those old feelings will be out of me. That doesn’t mean they will be gone forever, but they won’t be pulling me down anymore. I will be free to create new thoughts that will move me forward.

Is that really possible?

Only a few more steps to go before turning the corner towards a better life. It is possible!

Stay with me! We’re on it!

See you next week.

Paula

Blog Healing Journey-- Letting Go of the Past—Sadness

Pervasive sadness.

Unanswered grief.

Chronic mourning.

This week, the next paragraph of my Letting Go of the Past letter addresses sadness. As siblings of people with disabilities, we often feel sad about what we missed out on; about what we will never have; about what might have been. It’s a chronic grief cycle that can never be resolved using our current thought processes. But before we can change those thoughts, we need to feel the sad, empty feelings inside. Really feel them—without a bottle of booze or a pint of ice cream. Feel them with a pen and paper and a big box of tissues. Don’t be ashamed to cry, even to wail, out your sadness. We hurt inside and have been hurting for a long time. These feelings have been building up and will not disappear overnight.

When I was a child, mom and dad always did their best to try and fix my sadness. They would feed me something, buy me something (if they could afford it at the time), try to distract me. The aim was always to be happy, be positive. Put on a brave face. Don’t be sad. In my entire life, I only saw my mother cry two times. Once about something related to my brother and the second time when she found out she had a terminal illness. I learned how to hide my emotions from the best.

We sibs have been taught, unintentionally, to do whatever it takes to avoid feeling sadness or other negative emotions. We are the strong ones. We are the ones who must hold it together when others can’t.

The real problem is that the sadness and negative emotions don’t just go away. They only get buried, destined to surface again and manifest themselves in a different way. Just like with anger, when sadness is covered up rather than addressed, we will do unhealthy things to deal with the uneasy feeling that is inside. Things like drinking too much, eating too much, shopping too much, watching too much TV. The list goes on.

I’ve suffered with those buffering behaviors since I was old enough to get my own food out of the fridge. I think I’ve buffered using most vices.  I still struggle with it. It’s embarrassing to admit. Because, as you know, I am supposed to be perfect. That’s also part of the deal when you are the sib of someone with a disability.

So, onto paragraph 2 of my Letting Go of the Past letter. 

I am sad because…

·          I feel like I was a bad sister, in my heart  

·          I was ashamed of my brother

·          I resented my brother

·          I wished my brother was “normal”

·          I never knew a “normal” sibling relationship

·          I never knew a “normal” parent-child relationship

·          I never had a “normal” childhood

·          I will never have nieces or nephews

·          I can’t fix everything

·          I always put others before myself, to my own detriment

·          I feel as though I am not enough

·          My over-protectiveness of others has negatively affected my relationships with my spouse (now ex-spouse) and children

·          I have always put up emotional walls around myself to protect myself from being hurt by others—even those I am supposed to trust

·          I’m afraid to let others in

·          My self-esteem has suffered from the judgments of others

·          I have few real friends—I have trouble relating to others

·          I don’t know who I really am

·          Everything I did in life was because of my brother

·          Everything I did in life was to make others happy—not to make me happy

·          I feel guilty a lot, like it’s always my fault

Just as I said last week, these are my thoughts. They may not be yours. We all have our own experience. This exercise is not a “blame everybody else for your problems” exercise. It’s a purging of your thoughts exercise.  There are no right or wrong thoughts. If you think them, they are real for you. You need to write your thoughts down to see them, and then you can deal with them.

Now it’s your turn. Write down your thoughts. Don’t hold back. Allow the sadness. Embrace your feelings. Don’t look for excuses for them or ways to make them happy—not yet. How do you know what happy really means until you are able to fully experience sad? Being a sibling of someone with disabilities is not a life of hearts and flowers. Don’t try to force it to be that way. Accept what is.

Part of the time, life sucks. So, let it suck and feel how bad that feels. Then, when you’ve learned how to fully feel the sad feelings, you can learn how to fully feel the happy feelings.  Without contrast, sad vs. happy, think how boring life would be! Why have we been trying to hide that contrast for so long? What are we afraid of? A feeling is just a vibration in your body.

I appreciate all the comments and feedback I’ve been getting from my fellow sibs. Love to all!

Next week, we’ll uncover more emotions on step 3 of our journey together. See you then!

Paula

Blog Healing Journey--Letting Go of the Past—Anger

Today would have been my brother’s 59^th birthday. For at least the last 50 years or so (probably more), I have identified myself as the sister of a person with a disability. I have identified myself as a helper, fixer, do-gooder, people-pleaser, champion of the underdog, and mostly—worst of all—a victim of the circumstances of my life. Everything I did, even though at times I tried rebelling my way out of it, I did to fulfill the roles I believed were true about me.

My parents have both passed away, and yet I still do things to try to please them.

I am 62 years old and still not clear on who I am.

Step one is to Let Go of the Past.

The past is gone. It is only a thought. It no longer exists and can only affect me based on the thoughts I think about it.

To Let Go of the Past, I will be writing a letter to myself over the next several weeks to help me to uncover negative feelings. While I do not endorse dwelling on the past, it is important to actually face the past, deal with it, and move on. Covering up feelings by overeating, overdrinking, overworking, overspending, over-doing anything just to take away the pain temporarily will never solve the problem. It will only create new ones.

This process may seem harsh at times. It is not meant to disrespect of my parents or my brother. It is an examination of my own thoughts and feelings through the eyes of a child who experienced pain because of her sibling’s disability. Unfortunately, those childhood feelings are still with me and need to go away. I am doing this process both for my own personal growth and also to share with other siblings, so they may know that others understand. It is the beginning of the healing process.

Some people might think I didn’t love my brother or my parents if they were to read this blog, but quite the opposite. I loved them fiercely and was in protection mode most of the time.

Let’s get started:

It is important that you address your letter to yourself. I addressed mine, “Dear Paula,”

During the first week, write paragraph one, “I am angry because…”

I will not include the full letter here because some of the stuff I do not want to be public. But here are some of the thoughts that I have been feeling angry about:

     I am angry because there were so many responsibilities and so many expectations placed on me;

     I am angry because people judged me and my family because of my brother;

     I am angry because my parents made excuses for my brother’s behavior and his mean, aggressive actions towards me because he “didn’t know any better”;

     I am angry because my feelings didn’t seem to matter; because I was “smart” I could always handle everything;

     I am angry because I feel like I am not enough, no matter what I do.

Your list may (probably will) be different, and in some ways similar to mine. Be honest with yourself!

I suffered actual trauma as a child, but it was never acknowledged because the person causing the trauma (my brother) was disabled. I guess that was supposed to make the trauma imaginary.

I’m convinced that my parents actually believed that it was just drama and not real trauma. Paul was disabled, I was not. Therefore, I was supposed to be able to deal with anything. Although I know that Mom and Dad did love me very much, what they did not know at the time, was the lifelong effects the trauma had on me—eating disorders and other buffering behavior, perfectionism, people-pleasing, lack of personal identity.

That’s the first step of the process of Letting Go of the Past. I invite you to work on it this week. Get your paper and pen and start writing. Let it out. Let it all out. Don’t censor yourself. And, allow yourself to actually feel the anger. Don’t push it down. Don’t try to hide from it. Sit with it. Experience it. How does it feel inside your body? Accept how much it hurts without numbing it away with food, alcohol, TV, or something else. Let it come out. And be gentle with yourself. Treat yourself well. You have gone through the hard things and survived. 

You’ve got this.

www.siblingcoach.com

Siblings as parents—Where I began

I still remember seeing my baby brother for the first time. I was three years old and, in the 1960’s, you couldn’t go into the hospital ward until you were twelve years old. At the age of three, I was allowed to stand at the bottom of the steps in the old hospital (a remodeled house) while the nurse held that precious little bundle up for me to see.

Me, at about 5, with my brother.

In that day and age, it was very common for older children to babysit the younger children in the family. This was especially true on the farm, which was where I grew up. So, at the age of 4 or 5, I started taking care of my little brother for a few hours at a time while mom helped dad do chores outside.

As a young child, I relished my role as caregiver. I felt important. I felt responsible. Sometimes that adult-level role left me feeling alone and afraid, but I always tried to hide it if I could.

As my brother grew, it became apparent to my parents that he was not developing like other children. After a long, painful journey (I accompanied my family on the appointments) my parents got the word that my brother was disabled. Back in the day, they used the “R” word to diagnose my brother and the doctor advised my parents to institutionalize him.

My parents didn’t need to think long about their decision. They would keep their son at home, he would go to school, and he would live as normal a life as possible.

My typical sibling relationship quickly became atypical. Normal as possible was anything but “normal.”

Throughout life with my brother, my personal pain was great, and my desire to “fix” everything even greater. I was consumed with guilt, anger, and resentment, but those feelings were buried so deep, I wasn’t even aware of them.

Check out my attitude! 

For many years I defined myself by my past—as a sister to a brother with a disability. I didn’t give myself another identity. This prevented me from moving forward to my full potential. Even though I was an over-achiever (an effort to make my parents happy, I believe), staying stuck in the past has always held me back from what I really wanted in life. 

Over the next several weeks, I will be using this blog to go through a process of moving from a past-focused way of thinking, to a future-focused mindset.

This blog journey is designed to help my fellow siblings realize that whatever your past or present relationship with your disabled sibling might be, it is possible to let go of what isn’t working in your life and move forward. 

Please join me! 

www.siblingcoach.com 

The following article, which was posted by a sib on the Facebook group, really hit home with me, even though my family life did not parallel the woman in the article. It’s a good read about  experiences and feelings of many sibs.

https://www.theatlantic.com/family/archive/2017/10/when-kids-have-to-parent-their-siblings-it-affects-them-for-life/543975/

Starting at the end

This is one of my favorite pictures of my brother, Paul. I used it for his obituary last month. Paul was my little brother. He died of heart failure at the age of 58. In this picture, he was in his 40's, I think. In this picture, he looked like an ordinary guy. I am ashamed to admit, I was sad my brother wasn't an ordinary guy. He was a man with disabilities. My life story parallels the stories of so many siblings in this world--siblings of people with disabilities who grew up during baby boomers generation. Those of us who just lived with the hand we were dealt and now, as adults with children and grandchildren of our own, are still trying to figure out who we are. Trying to define ourselves as individuals, separate from our sibling and their disability.

We live with shame and guilt. We try to fix the world. We neglect ourselves in order to help everyone else. We suffer silently while telling everyone things are great. We drown our pain in food, alcohol, work, or whatever else numbs the hurt.

At the end of my brother's life, I found new perspective. It is my goal to share that perspective and hopefully help other individuals who have siblings with disabilities learn to deal with their pain in a healthier way. Hopefully, while they and their sibling are still alive, so they can appreciate their relationship more fully. This is my mission.

Here are Paul and I in the fall of 2018. There was no indication that he would be gone the following March.