What have I been up to? This...

“WARRIOR”

I have to go. There is no other choice. No way to say no. No denial of what is to come; all that is in doubt is how soon. I have a commander that is one of the best. He is respected and trusted. My team is supportive and always has my back. The commander will guide the mission. I don’t know how long the mission will last but hopes are that it will not be long.

I hope for a short mission. I want to get back, back to my life, my real life; the one with kids and laughter, not grim silence and waiting. I want to get there fast. If I could run out the door and make this mission disappear, I would. Instead, I wait.

Waiting is a tension all its own. Muscles tight, holding in everything I want to say but am afraid to voice. I work to stay upbeat, talk about anything but what is coming. I make plans; plans for next month, next year, anything to avoid thinking of now. My heart is full, brimming over and waiting for the first crack in my armor to appear. I fear what will come pouring out when my armor gives way. No one can hold this pressure. The human heart was made to bear only so much.

In and out, I focus only on breathing.

I hear echoes up and down the hallway outside but no one enters. Rustles outside betray the presence of others, they know what is coming, the mission I am facing. The clothes I wear are not my own. They are scratchy and smell of nothing. That same nothing permeates the room. A room full but filled with emptiness. I wait; it’s all I can do.

I am isolated, alone, sitting here in myself with only memories as companions. I prepare, as much as anyone can for what is to come. The word comes, tomorrow.

Tomorrow, I go to war. What am I leaving behind? What message do I leave for my family, my sons? They make you update your will, just in case, they say. What happens if I don’t make it home? God, I don’t know how to do this. Rest, they want me to rest. I can’t imagine sleeping now. Clothes not my own, bed not my own, I don’t even smell like myself. I have absorbed the nothing of the room. I know that I am as prepared as I can be, but I am not prepared at all.

I wait. A last goodbye and I wait. All is ready. I head out.

Smell. That is the first thing I notice, the smell. Blood, antiseptic cleaner, All I smell is sterility. The odor burns my nose. I want to turn away but am unable to move. Sounds blur into the hum of buzzing bees. A background vibration that is unfamiliar and unrecognizable as sound. The vibration exists at the edges of my consciousness. My eyes, I cannot open them. Lashes flutter in futile effort. A hand grasps mine. Firm and gentle, the touch is familiar.

In and out, I focus only on breathing.

Colors flash behind my eyes as the buzz of bees continues. I find myself surfacing only to swim in a pool of flame. God, the fire burns. Lights flash as red, grey, and white; flares that are overwhelming and deepen my fatigue. I swim in the burning flames and they lick at my nerves. My neck screams, “Make it stop!”All I know is an agony of fire. Burning acid that eats away at my awareness.

Words I can see but cannot say. I open my mouth and no sound comes out. The hand squeezes mine. It grips my wrist, rubbing in circles, soothing and bringing me closer, out of the pain. A buzz. Something tickles my mind through the pain; a brush of butterfly wings. Something I know, but what?

Voice. It’s a voice I hear. A voice I know. What is it? More voices, some I know, some are new. He is here. I grip the hand in my weakened grasp. He is here, that means I made it. Oh God, I made it. He is here, I am not alone.

The hum comes again. Three, three voices. I hear three voices. Words. I hear words. Through the pool of fire, they come.

“I think she’s waking up, Dad.”

A buzz. Nurse? Nurse, that’s the word. I’m in a hospital. O.K. A nurse makes sense.

Fire, God, make it stop. Coming back is swimming through a pool of fire. Flames lick and flash, lashing deeply into my neck. I try to move but my body is bruised and beaten, lying here on the bed. No control, no power, no strength. God, it burns.

“Neck. Hurts.”

“Yes, it will hurt. The surgeon had to cut through some muscles to get to the tumor. Rest.”

“No. Neck. Hurts.” My voice rasps out words as whispers. So much effort to do so little.

“I know.” Pacifying and dismissive the words come. Unheard as the pain flares higher.

I gather strength, strength I do not know I have. “My sterno-ceido-mastoid muscle is on fucking fire. Adjust the goddamn pillow.”

“Oh.” Finally, understanding.

Relief rolls in like a cooling wave of clouds; a fog that blurs the edges of the fire and brings peace. Enfolded, supported, released from the acute pain of burning. At my lips a cup is pressed so gently given as if a first kiss. Water; cool, soothing, sweet slides inside my parched mouth. I soak it in past dry lips. Desert throat; raw, worn, and tasteless. Arid. Barren. Without life. God, I am so tired.

“How do you feel?”

What? Why do you want me to answer questions? Why? No, I just want to sleep. No more fire. No more burning. Awake is pain. So much pain, pressure, fatigue soaked inside every cell. “O.K.”

“Your dad is here. You did great.” Voice steeped in safety and warm with love.

“Hi. What’s going on?” I croak out through my raw throat. I still can’t see.  My eyes are too heavy to open them. Lashes flit and flutter impotently. Nothing aside from a blur of red and white can be seen. I smell blood, lots of blood, my blood. Iodine, chemicals, rubbing alcohol, and bleach; the odors are assaultive. I want to turn away, hide, but I cannot move. Trussed and tucked onto a table, immobile and contained.

“Water.” I take a bigger sip and immediately my body rebels. I throw up and cannot stop. Stomach acid reawakens the fire in my throat. Calls for the nurse are answered immediately in ICU. Pricks of needles, medicine brings relief, but the damage is done. It triggers a coughing fit. Uncontrollable and violent, it has been a day of violence. Each spasm tears through my skull like thunder. The air is forced and ripped from my lungs, already bruised and tortured from surgery. Hands soothe and pat. More medicine is given through IV lines. The attack retreats.

“Surgery was longer than they thought. You were in for five and a half hours. They think they got it all, but it was more than they thought. Dad got here just as you came out. He drove without stopping to get here in time. What do you want me to tell everyone?”

What to tell everyone? I absorbed it, this moment. I made it. I was out. I was in the after. We fought and won. Thank God, we won. I hurt everywhere, but I have a chance, a chance for a life. I made it. I can do this. I did do this. The battle is won but the fight remains; the fight for life, a future, for more than now. Thoughts are fragmented and elusive. This I grasp, every day, every moment is a battle to be fought, a battle to not give up, to not give in to the pain, loss, and sorrow. I breathe, in and out, unable to grasp the bigness of hope.

What to tell everyone? Tell them God is good. Tell them second chances are real. Tell them that pain and grief and sorrow are not the end. Tell them that they can learn to see without sight, that they can learn to hear around deafness. Tell them that I can learn to think beyond my damaged and broken brain. Tell that that hope lives and shines its glory, draping the pain in an iridescence unsurpassed by any temporal beauty. Tell them that hope is everything and that potential is infinite.

We are all warriors in this life. A fight we are ill prepared to handle alone, but then we are not meant to. We are not meant to be alone. We are meant to create connections, relationships, reach outside of ourselves. We are meant to learn that pain is not everything, that it does not win if we don’t let it. There are good days and bad days. There is still pain, more than I ever believed possible. There is still danger and there are daily challenges. What a thrilling adventure life is. I am blessed to be able to live it. What to tell everyone?

“Tell them I am OK, and thank you.”

 

A Meaningful Life

When coping with an injury such as TBI that can result in disabilities and other complications, it is easy to become focused on the injury. The more you focus on the event, on what happened, on the impact in every area of your life; it can eclipse other areas of your life. You see, breathe, and live your injury as its impact seeps into the corners of your life. Activity levels, energy, memory, mood are all impacted and make it seem as if your entire life is made up of your injury.

 

It is only as you work to establish areas of your life, apart from your injury, that you find how much of you is still there.  Each additional skill, talent, or interest adds to the complexity and fullness of a life that can be yours. It is not easy, nothing worth doing ever is. With careful and consistent effort you will find that you have a full and meaningful life, in spite of your injury.  

The impacts of the injury are still there, but as you grow and develop; its impact becomes less important. I encourage you to reach out, to stretch, push your limits and test yourself.  Discover a new level of living and being that allows you to live a meaningful existence. Injury is not the end; it is simply a part of your journey.

We each face trials, for some it is more apparent. your injury can serve as a spring board to propel you higher and farther than you ever imagined going. Look on your injury as a chance to take stock, an opportunity to reimagine what and who you can become. You will have pain and grief as you let go of ideas and ideals of what you thought you were, but now is the time to decide who you are and who you will be. You have the power to choose, to decide what you will be. Be patient with yourself and kind with others and you will find more is possible than you imagined.

God bless and keep you.

 

 

 

Absenteeism

Yes, I have been taking a sabbatical. No, I have not dropped off the face of the earth. Yes, I am still participating in rehab and working as much as I can on my Vocational Rehabilitation plan.

I am taking a few classes to help move me back toward being employable- math and English. I spent much of the summer going over basic arithmetic and was able to test into a high school algebra class- so much harder than you might imagine. I am holding my own. With a lot of review and practice I am holding on to a C- This is not easy considering that after surgery I had to relearn the names of three dimensional shapes and how to recognize the symbols of numbers.

My English class I love, but I have found that I have strong opinions and have no fear in sharing them. If someone is wrong, they are wrong. Another classmate was spouting off online about gaming, girls, and sexual biases. I kind of tore him up. I called out each of his arguments and explained in detail how they were not based on fact but only on a narrow perspective that he was in no way interested in expanding. I then offered to help him learn how and when he could broaden his perspective instead of sitting, entrenched, in his biases. My offer has not yet been taken up.

Yes, all my work is online, I can't handle the stress of physical classes. I do have an elaborate IEP and I have to have proctored exams. On my math midterm I got an 83%. That has never happened in my entire life. My left brain seems to be able to learn information better than it has in years, it just takes me an incredibly long period of time.

During all of this I also got to cope with the special problem of developing a tolerance for a medication- meaning that my dosage was creating side effects. Withdrawing from this med is compared to weaning off of drugs- not the funnest thing I have ever done. I will be glad when this part is over. This means that my brain and system are learning to cope with additional stress and strain without pharmacological help. I am treading water and making baby steps forward. The plan is to still be able to function as fully as possible. I will get there, why, because I am too stubborn to do anything else. A half life is not enough. Until then I do my best, I love my boys, and I count my blessings everyday.

One Size Doesn't Fit All

It can be so aggravating to try to complete rehabilitation toward employment after a brain injury.

Most assistive services do not have a clear and streamlined system of enrollment. Additionally associated providers mix you into the rest of the population until you tell them otherwise. The system is littered with nuances and subtleties that are generally not explained. Things such as how to obtain access to books, available supports, accessing supports, using key words and specific language. It is all quite difficult to navigate.

On three separate occasions I have had to ask for help regarding the next right step. My case manager has helped so much in pointing me in the right direction. Sadly without that direction I would be lost.

Prior to injury I believed that telling a client what they needed to do next should provide them with the necessary information to move forward. I am finding that this simply is not true.

Not only do I now require verbal communication, I need written follow-up. After I am able to understand what is being asked I have to process through my anxiety and allow for time when I am not physically fatigued.

I was unable to plan for time this week and this blog finds me sitting, waiting in a loud and open office area, for someone to call my name. 

"Can you let them know I have trouble hearing?"

No problem. Before coming down to the office to understand a concept I would formally have thought nothing about, I sent three emails, placed phone calls, and emailed my support team asking for help.

Unfortunately  I am the only one that can sort out what is going on.

When did help become riddled with barriers? Why is it so difficult for others to understand that my limits are not for my comfort, they are necessary. How can I help people to understand that what may be normal or easy for someone else to grasp is beyond my ability to comprehend. Right now, it is asking everything to follow along with what I know I need to do, determining when there is more is beyond me.

The hum of the ventilation system is buzzing in my ears and my scar has already begun to throb. My eyes want to close from the lights despite using my filtered lenses. I have at least another hour to go. I doubt I will be able to accomplish anything more today- I may even just go home to bed. (To help you understand, it is 2:30 in the afternoon.)

 

From all accounts these hiccups and delays in service are normal. What a tragedy.

Many in my recovery team have gone above and beyond traditional care for those with disabilities. I can't imagine trying to cope with all of this without a good support system. I find myself continually surprised and how this tumor and surgery have affected my functioning. Things that I never thought of or even noticed prior to surgery are devastating. How do people do this without a team in place to support them?

While I do have some of the best supports possible, I am still surprised at the lack of understanding or even empathy that enables people to look past you. If you have ever had the thought that you have done enough or helped more than normal, please take the time to think about this person  as an individual. We do not fit into a mold and it can be helpful if you ask for ways to make things easier so that we can participate more fully in life.

Those with disabilities offer a necessary and valuable insight into the world around us. Maybe its time to stop using a "one size fits all" mentality and really take the time to see one another. What changes might you see in your community if you took the time to see everyone as they are, rather than fitting them into a mold? Keep in mind, we are all individuals with valuable insight and contributions. As soon as we try to make it easy on ourselves by thinking that maybe one size fits all is the way to go, think of all that you will miss out on when you stop seeing others for who they are.

(Hey, there goes my double vision. This could be fun.)

System Fail

Learning to navigate this new world, the world of can't and have-to, can be both overwhelming and discouraging. It is especially frustrating when the very systems set up to help those with disabilities actually serve to impede progress. We, who spend so much time overcoming limitations, must go out of our way to explain and review those same limitation to prove that we need assistance in healing and overcoming challenges. I had to request some documents from my Social Security case because of a mix-up with paperwork. Due to the nature of the paperwork it was necessary for me to request the documents from my local office.

Sitting in the Social Security office felt so completely different from my other interactions through phone calls and online support. Petitioners collect into a large room just off of a hallway, an armed security guard at the front of the room. We take a number and sit in chairs, watching a screen as we wait for our number to be called. We sit with stacks of paper, some crying, all tense, and wait. Sitting there it feels like the very hope in your cells is being drained away and you are left a husk, a shell, empty of all vitality.

After everything vital has been drained from you, you wait some more. Sadly my wait was not considered long compared to what others have done. Your number is called and you are directed down a long hallway of glassed booths. High walls, squeaking chairs, and hard floors reminiscent of a school cafeteria create a hallway of pain. Petitioners speak through small round holes into the windows, at the workers inside.

Separated from each other and restricted from any meaningful connections, the workers provide documents and pens to complete forms. You can hear muffled cries, scuffles, and whimpers around you. There is nothing to absorb the sounds of grief and pain, no softening, no contact with one another. For me, the sounds ricochet and build, making my sound sensitivity unbearable. My husband has to help me fill out the simple request form. My worker leaves me to complete the form and returns when I am done.

I am told that records, though stored through this location, are not accessible at this time and I will receive a response in the mail in a few weeks.

I do receive a response, there is a $44 fee to retrieve the records before I can have them sent on to a third party, like my medical provider. I am not allowed to directly receive a copy of the report, I am the patient, not a medical provider.

More than 8 weeks from my initial petition and there is no sign that the records have shown up at my providers office. So, we wait.

How much time to petitioners spend in limbo trying to understand the status of their case? Trying to access help? Trying to find ways to cope with life altering situations?

I am blessed. I have wonderful medical providers who help me to navigate this world. My case manager through Social Security has been both helpful and concerned for my recovery. I am stuck on the level of demoralization that came from sitting in an office, making a records request that could not be done over the phone or by mail. I pray that I never have to return to the office. It feels horrible. I cant imagine the effort to get up each day and go into that office by the workers. I was never treated unkindly, but the very nature of the sterile environment and an armed guard greeting the disabled and inform as they complete requests for information is demoralizing. There has to be a better way to greet those most in need. We can do better, don't you think?

Don't Box Me In: Breaking Out of the Disablity Mold

Having a disability offers an interesting perspective of the world. It seems that everyone has a preconceived idea of who you are and what you are about. It can become disheartening and frustrating when you come up against these imposed expectations. People, in general, are not happy to have their pre-conceived ideas challenged. They push back, trying to force who you are and what you are capable of into a box titled everything from "Disabled" to "Un-able".

The belief of "Unable" is a common one. Many people focus on what was lost, what we don't have, what we are perceived to be lacking. The idea that all persons with disability are somehow unable or incapable is just wrong. Many of those who fall into the disability category offer many more abilities. Those abilities can be stronger and function at a different level even than fully well persons.

One example of this is my own hearing loss. After extensive and exhaustive study it has been determined that my hearing will not be able to come back. I am fully deaf on one side. Any one who has been following my writing can tell you that I suffer from hearing so acute that I can experience physical pain in normal social settings. Pain because the volume and tones that I am able to detect are heard at a higher and more intense level than those with normal hearing.  In order to attend events such as watching a movie with my family I take along headphones to muffle the sound enough that I can tolerate sitting with them for the duration of the movie. Despite such precautions, I still hear the movie so acutely that it taps my energy and often leaves me fatigued for hours afterward.

Another example from current media is the idea of Dare Devil. His loss of sight led to an uncanny awareness of everything that he could hear, see, and even touch. This is not to say that all persons with disabilities have overly developed senses in other areas, but each of us has adaptations in other areas where our mind and body have come together to allow us a higher level of living. Higher than if we just wallowed and sank into our disability.

People are comfortable with the predictable. Challenging our own perceptions and paradigms is hard enough, then we venture into the world. Taking our internal fight into society engenders a fight of another kind, the fight to be seen. It is talked about in the disability community the idea of invisibility. We are looked past in the grocery store, eyes skim over us, pretending we are not seen or that the "shame" of our disability is not noticed.

Children are rushed away, not able or encouraged to ask questions and find understanding. Many of us are prepared for and love questions, when we can take the unknown out of the equation, we are seen. Children are incredibly honest, they will call it like it is. This is utterly refreshing. The open and nonjudgmental queries of a child trying to understand why someone looks or sounds different opens the rest of us up to really see one another. I am no longer invisible.

How do I think other people should treat disability? Disability is simply a part of life that we work around or through. It is a corner of who I am, but it is not everything I am. Like having brown hair, it is a physical descriptor, not my identity.

I am not ashamed to use a cane or have trouble hearing on one side. I am not ashamed to stutter, have trouble forming words, or misuse words. I know who I am and where I come from. Those who look past, who don't see, who use the excuse of "I didn't want to offend", they should be ashamed. It is when we stop seeing one another and really listening that problems fester and worsen.

If you really want to look past the label, if you really want to avoid offense, then see me as a person. Don't pretend that I am not there or that I don't exist. Ask me questions out of concern and a desire to understand and then move on. Ask me about the rest of my full life. Ask me about my kids, my dog, my husband. Talk to me about stars and small towns. I can talk about spirituality for hours. I love to go hiking. I paint, I draw. I am not my disability. It is a reality of my life, but it is only one part of my life.

The lessons I have learned through this journey continue to amaze me. I can teach you about having and creating a full life outside of your challenges. I can teach you that bad days don't last, that life is beautiful and worth living. I can teach you about losing everything you thought you were only to discover who you really are.

What I can offer is valid and needed, so I will continue to share and write. I will keep standing up and demanding not to be boxed in by the expectations and preconceptions of others. I will keep demanding to be seen, to shake up the ideas of what you think you know until each of us is seen for who we are, instead of the idea that is most comfortable for someone else. I will keep speaking until those who are considered "Disabled" are no longer seen as unable but valued as members of the same society who can offer valuable and necessary perspective and insight. Let us out of the box, we don't belong here.

Pajama Day

So, had my audiology follow-up today. Or not. Since my doctor did not make the proper recommendation we did not have the necessary equipment in office to do the tests today. Got some real input and advice however. I was clearly informed that waiting does nothing for hearing loss if the cause is not cranial swelling. Because mine is not caused by cranial swelling I  get to return to the hospital for more evaluations.

My husband is really struggling because at my 4 month follow-up we brought up my hearing loss and it was dismissed out of hand. "I don't know why you would have that." No evaluation, no recommendations, no follow-through. Today we found out that time is our enemy if the nerve is functional. The longer I go not hearing, the harder it will be to relearn. We also began talking about the possibility of needing a second surgery for a cochlear implant. (God, I don't know how to do this.)

I hadn't considered it before but I really want that PA to not ever interact with a patient again. Mixing up paperwork, dismissing symptoms, and not following through on files and documentation- these are big problems when you talk about peoples lives. I'm so tired of trying to heal and then to feel this angry again is really hard. I have no way to express it. No way to feel or show it. The people around me have been through so much, breaking down and sobbing is just too much.

I declare today a pajama day. I'm going to go eat my feelings; chocolate, must have chocolate.