There are many ways to describe people who have amazing and sometimes uncanny abilities. Typically we all know one person who has some variety of oddball talent that is completely useless, yet privately we are jealous. My father, David Juers, has become a very good photographer in retirement and it’s stunning to see his creative eye bloom. The world is full of an endless talent pool to dip in, depending on your pool of preference.
I remember the entire medical staff team I worked with, laughing at the dude who recorded himself clapping fast. His name was Kent and it went viral back in 2008. The world record holder now is Seven Wade, but I only know that from first hysterically laughing watching Kent If you haven’t seen it, you’re missing a real opportunity to laugh your butt off. I laughed really hard, sadly, my butt remains intact and taking up far too much realestate—sigh.
People throughout the globe have talents just as amazing both deemed useless but entertaining, too innovative and helpful. The later tending to be more applicable to daily life, and in some cases, able to breathe life into others. That could actually describe a free clinic physician or First Responders, educators, Guide Dog trainers, and many more who look to make other people’s lives better in some way.
But in this article, I am referring to all the individuals trapped in the struggle for life within the secret walls of the disabled home, a disabled body, or caring for the fragile by themselves. Whom must dig deep to find, cultivate and strengthen the self-regulating skills that keep their homes functioning and the members within progressing into states of well-being.
Some of the most death-defying acts are accomplished by simply staying in control of one’s rage, anger, frustration, or disappointment, and host of other emotions commonly landing us in negative, highly charged states. Being frozen in that destructive mindset is more incapacitating then any actual disability or medical conditions present in the home. I know that sounds crazy, but self-regulation is a skill. Literally a MAD SKILLZ kind of thing.
To self-regulate means the ability to calm yourself down when upset. To successfully self-soothe even in a heightened emotional state, and where you can tend to your best interests, needs, values, and safety. For example, my boys and I often watch a comedy animation when feeling down. Or play soothing music and use vapor scents to alter active anxiety. I have a whole bag of skills to reach for when my brain is in a flight or fight state and tempt me to end up too upset to think properly.
My mother is a powerful source of calming when suddenly overwhelmed by broken heartedness and feeling of being worthless. I recall our walks in the rain, and how she taught me the rain can be depressing with the grey sky and seeming unfriendly outside, or we can jump in some puddles and sing some nonsense songs. Usually ending off with some Hot Cocoa and marshmallows. I never looked at the rain the same, and regularly sit out on my porch and breathe it all in.
As part of her longterm battle with breast cancer, she turned to nature over and over. She had always loved the peace, beauty, and hope a sunrise gave. So much, that towards the later of her years, she moved to the coastline where her home was in the optimal spot to view the sun rising over the ocean. That example is a personal core of mine now. Thought replacement should be personal, and that one works great for me.
I teach my sons if your face is hot, chest tight and the room is spinning, first sit down. I tell them to actually touch their face, and chest then lay your hands on your lap and just breathe. Sounds great, but that can be nearly impossible if too focused on the feeling trapping you. This becomes intricately more complicated for my boys and me, as we all have multiple medical conditions that can create exactly the same symptoms. Ones that require action geared towards medical stabilization and safety. My most favorite website to visit when helping my children is Understood.org . The guidance is spoken in lay terms so applying it is a snap.
Tuning into what your body is doing has been key in filtering whether I need to self-regulate emotions or attend to an active medical crisis. That is not something healthy people may consider. For example, if my son is having a tremor episode because his potassium or salt chemistry is off the charts, deep breathing is not going to make it better. It can calm him down, but seeing that he is not upset, why am I instructing him to calm down? This is just a sample of why the disabled or medically fragile home needs to have an active set of self-regulation skill tailored to their unique circumstances.
I rarely ask the boys, “How do you feel emotionally?”, at those times. For instance, when I am scared and bug-eyed, please don’t ask me to describe the fear, help me calm down and feel safe. After I am settled and focused we can talk about the dogs I just saw viciously bite my neighbor as he jogged past my house. Which in response caused me to flash back to the moment my face was shredded by an Alaskan Malamute in Ridgeway, PA at age seven. If you insist I go into detail while at the moment I might faint before remembering, oh yeah, I’m inside behind a locked door. They are outside and my cell phone is in my hand. Or if I am highly agitated because an idiot just called my kid a disobedient freak in the check out line. I really don’t want to describe the type of anger I feel in my heart just then. So finding that space to level yourself is very empowering.
I find by replacing those fear thoughts with other really positive ones, I can get past the intensity less destructively or with fewer lapses in function. Not that I can do it easily every time. It takes practice, trial and error and hard work to land upon the right combination for each situation. I fail, like everyone at times, taking a bit longer to snap too as I have come to expect of myself. But, I do get there because my well being demands that.
During my marital years, in some of the most intense moments of domestic abuse I suffered, I witnessed what a true beast, a lack of self-regulation creates. And in households with the extra strain of disabled members living together, the environment can get organically charged with negative emotions. Sourcing the anger changes everything about how to interact with it. Ignoring its effects sets everyone up for devastating outcomes.
Once out of that abusive marriage the trauma left the children and I flashes of rage remembering events. Even now, I must manage the rage I feel when my youngest wakes from a night terror already halfway out the door before realizing its a dream, or my oldest apologize that I have to give his nebulizer treatment or assist him to bathe because his brain injury makes that too difficult.
Their father would complain about anything that required he sacrifice time or proper affection, especially if it meant missing a chance to preach and be showered with ego building self-worship. When I see my children hurt, I have to “choose” to regulate that negative energy or become a current victim of an old injury. If I freeze up with pain, I can’t act on the needs in front of me. I did not accomplish this alone, it took help and lots of it.
I do not say this as if I have all the answers. I can say confidently the path to those are in the lanes of guided clinical therapy, awareness, esteem building and brutal internal honesty. Raw to the core openness that gets you past the pain. Otherwords, what waits for you is a bundle of short fuses easily lit and light fire to your life.
What may be unique to the medically fragile home, especially where mental health compounds already complicated conditions, is that family members can grow to resent one another’s disabilities. Something my son taught me by accident and not at all directly.
When I suffered my spinal cord injury, the expanded effects went past my body. He was just three years old and loved the continuous stream of hugs I gave. Domestic Abuse causes such insecurity for children. A major source of comfort for him was the physical safety of my arms and reassurance he is loved. But my injury caused intolerable pain if anyone hugged me, touch my shoulders or even reach out to my hand without giving me a chance to brace.
My son grieved at the loss of that physical closeness. I missed it greatly too but it was not as intense as he was experiencing. Where the lack of hugs and embracing stole a sense of safety away from him and even leaving him with a bit of feeling abandoned. He became angry and that was rare for him.
Watching that pain, observing its destructiveness, I pushed myself to hug and offer that support. I hid my pain, and cringed every time he would apologize for needing a hug. What surprised me was the instant rage I felt towards my now ex-husband, each time that happened. It was due to his abusiveness that my child was in pain. My injury was only a small part.
My only comfort was I found the courage and sense of self-worth to flee to safer ground. It took every bit of faith in myself to not continue to be conned into believing everything was my fault. At that time, he was a skilled master manipulator and I had to see myself through my eyes not his description of me through his emotional violence.
My youngest, Zane, was born with some cognitive disabilities that resulted from apparent in utero and birth injury. But it worsened when development fell off. Even with all his delays, he too felt a sense of rejection that Dad was resentful towards him when his illness or needs interfered with his agenda. The attention any narcissist hunger for is cruel and regards no one but themselves.
Zane hurts to this day, unsure if asking for a sandwich is okay. You can’t make me believe if that was your son, you wouldn’t feel some type of anger. I certainly do, and although some areas I have reached a place of forgiveness.
There are many moments when the raw pain I see, plunges me into an urgent need to regulate those charged emotions. And yes, I do challenge myself to maintain as much forgiveness as I can muster. I refuse, I will not yield, to giving up that much space in my mind to an abuser, or online bully, or belligerent Trump, who is the ultimate abuser of the vulnerable. It truly confuses our young people as to what is just and acceptable behavior and treatment of others. It’s easier to forgive and be done with it. At least, that is what I tell myself the days doing that seems impossible.
What I wanted most back then was to escape, to bring us all to safety and recover enough from my large spinal fusion to walk, and then walk out that damn door. I wanted a life free of pain. But to get there, to even make the plan to leave, I had to get past that initial rage. The anger of abuse and fear that brewed in my heart was not going to allow me to focus.
Today, I am of much the same mind. If I give in to the temptation to focus on my anger, my hurt, my disappointment, my panic and allow trauma or someone else’s actions to rule my level of rage. All my growth will fail and I will not make the decisions a sound mind needs too.
In the next two weeks, I am going to face one of the biggest challenges of my life, that is going to test my resolve to utilize every ounce of self-regulation. But even knowing that, and planning for the test as best I can, is a step towards greater success. Using proper coping skills doesn’t happen by accident generally. Not for me anyway.
But by choosing to speak out on controversial topics, people “love” to hate. In our political environment today, some feel more embolden to be vicious in attacking others and the limitless bullying in Washington does nothing to set an example for the rest of us. Let’s be real. The fish rots from the head, as they say.
We are surrounded by a society that likes to push each other’s emotional buttons of hurt, anger, and confrontation. Dealing with the highly charged environment of the medically fragile home has enough emotional TNT to blow it off its foundation. Living in that and stewing internally drinks up incredible amounts of energy resources. It requires a way to manage.
If you find yourself really struggling with the anger of being sick, or caring for someone medically fragile in your home, get some help. I know that is easier said than done with all of the insurance loopholes making it impossible to access. But keep trying. I promise you, it will bless your soul, heal your mind and give a space to decompress that unending internal dialogue bringing you down. In the end, all that matters is making sure you have the best life possible and live in the best mind you can. I am working right alongside you, working to improve my own skill. So to ensure you leave reading this article with a smile and seedling of cheer, click play on this humorous uplifting video. I promise it will make you smile. And then we can all shout, I got MAD SKILLZ!
—Author Pamela Juers
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