A personal journey beginning the day I was rushed from the Emergency Room and admitted to the hospital to be treated for a large brain tumor. Through this life experience I try to share lessons I have learned and my faith in God is a large part of that. Some images can be graphic in nature, dealing with injury and subject matter can be triggering for some readers.
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.
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.
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.)
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?
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.
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.
Every person struggles with challenges. These challenges divert, dissuade, and detract from the goals and life we work to create for ourselves. You choose the level to which your challenges either pull you back, or propel you forward. An arrow cannot work without being drawn back. this may seem like a loss or lack of progress. For the arrow, it is part of the journey, propelling it forward, driving it toward its goal.
I find myself encouraged by videos and pictures that show challenge and triumph. Please enjoy. Yes, its a commercial- I don't care its a great story.
Additionally I find myself loving the following movie about the beauty of triumph in the face of challenge. Butterfly Circus.
Nic Vijicic is a motivational speaker and advocate. I find myself more inspired today with his perspective and voice. I am so grateful that there are people like this in life that teach me to reach, to strive and to finally glory in reaching my goals.
