Remaking the Holidays

This year has led to so many changes in our home. Going through weeks of radiation led to another shift in how we approach our days. With the holiday season approaching, it also became necessary to look at our traditions and consider changing things up.

We must be willing to change where we are now to get where it is we want to go. 

It is not enough to say, "This is what we have always done." That is a poor reason to do anything in life. Break down the day. What things serve you? What things fill your soul? What actually matters to you? And what no longer works? 

If something no longer works for us life, we realized it is ok to look at changes that more accurately reflect who we are now. This can mean changes in who we spend time with, how we spend your time, and even how we celebrate. I used to prepare an extensive meal, decorate elaborately, and even do most of the housekeeping. None of those things work for our family any more.

This year, we are changing most of our holiday meal. We are changing when we have family and friends visit. We are changing our gift giving to reflect where we are now. We are taking away things that pull away from what it is we want to accomplish, while leaving room for those things that matter most. 

We need to have reasonable expectations of ourselves and others. 

As we have shaped how we are approaching the holiday, we also needed to set some reasonable standards that reflect our priorities. It is unreasonable to assume that we are the same each day. It is ok to adapt our expectations to the situation. 

High stimulus environments wear me out much faster as I work through layers of light and sound. We have young children in our fmaily, some events are simply not a good fit for us right now. It is ok to adapt how we interact and what we interact with to reflect who we are. 

No apology. No explaination. No agenda necessary. 

When we are adaptable we can expereince the holidays as we are and instead of meeting the expectations of others, we are able to authentically engage with our world. We are able to do what matters most to us, and enjoy this time for celebration as we are today. 

Moving beyond what was, is encouraging us to try new things together. I couldn't be more excited. 

Dear Senator (Take 3)

I have recently written you as concerns disability rights and issues, I believe that healthcare may be a more appropriate topic. I beg you to maintain protections for coverage of pre-existing conditions. The actions of unethical companies that deny covered issues on the basis of a "pre-existing condition" inhibit free commerce, reduce mobility in the work force, and can sentence patients to death. It has been said that no one dies from denied healthcare. I beg to differ.
Raul Labrador, ID
While emergency rooms are required to provide lifesaving aid in case of a life threatening event, planned preventative care is not able to take place. In my situation, had I not arrived at the ER, prior to the Affordable Care Act, my operation to remove my brain tumor could have been denied. I would have been left to slowly waste away instead of moving forward to work again following rehabilitation.
Emergency Room:Legal Responsibilities
One life is too much. The issue of healthcare and coverage is a tricky one, but workers and businesses pay more than enough in premiums to pay for the healthcare needed. What they do not pay enough for is balloon payments and bonuses to insurance workers for denying claims, harassing patients, and using internal policies to pay the minimum possible.
Los Angeles 2009
CNN 2007
Please, don't leave another loophole to be exploited. I beg you to protect me, and please protect my children, protect their future. Please, don't make me have to talk to them again about mommy dying before they are grown up.
Thank you.

Dear Senator,

Dear Senator,

While I appreciate your written response to my most recent letter, I do not believe that a conflict exists between protecting what are considered "pre-existing conditions" with the new healthcare plan and working to replace those parts of the plan that are controversial, such as the mandate for coverage. I never thought that as a brain tumor survivor I would see my survival as a financial liability to my family. The toll it has already taken on my family can be seen in my children's needs and fears as my oldest son, who is 8, asks me before bedtime not to die. I lived a careful and healthy life. I do not engage in risk-taking behaviors; behaviors such as choosing to smoke, drunk driving, and drug use. No one has proposed using those as a measure of health predictors, rather than circumstances outside of individual control.

My focus needs to be on continuing to heal, caring for my family, and preparing to be able to work full-time again. It should not be on working to live, which current proposals would necessitate. Some estimates propose that my yearly healthcare premium would cost more than my entire brain surgery and hospital stay. This premium would not even mean that all coverage is met, it simply means I would have "access" to healthcare. For transparency my brain surgery and hospital stay were approximately $55,000. With my medications, therapies, and follow-up care I pay, out of pocket, a few thousand dollars per year.

I beg you, let survivors continue to thrive. Let us triumph and move forward to live and grow and contribute. I am doing everything in my power to show my children what living really is. Living is moving beyond challenges, continuing to grow and thrive. All I ask is a fair shot, let me live without fear that some insurance agency will decide at a later time that my life is a liability, that resiliency and determination mean nothing. Let me continue to live my life, on a level playing field.

Respectfully,
Making Lemonaid

To Whom it May Concern;

The letter I never sent sits on my desk. I can't do it. I cannot say all that I feel, my anger would overwhelm you. It's not fair to put that on you, but neither is it fair to leave it inside, dwelling and lingering.

Dear person-

While I appreciate your personal pain, please do not assume that you in anyway understand the scope of all that has happened. You haven't taken the time to listen, let alone understand. You assume and perceive my life through your own narrow lens. You make assumption after assumption, imagining that somehow I actually share all my pain. I may write about some of my challenges, more as an expression that they are real, but I in no way dwell on them. My life is made up of more than my injury, of more than my pain and I would much rather amplify the positive aspects of my life. Never fear, I am very aware of the realities, of the pain. Trust me, it never leaves long enough to forget. Please allow me to correct a few of the misconceptions about my life demonstrated in your letter.

"Well, at least you are home..." Factual yes, but this does not encompass the extensive support network that makes me living in my community possible. My husband is sometimes father more than spouse and I feel consistent guilt that I am, as yet, unable to be a full partner in our marriage. Every part of our relationship is a balancing act of my abilities and tolerance levels. My neighbors are aware and available should the unforeseen occur. I have hired help to get me through the days and do simple things like run and play with my children. I am home with oversight, care, and extensive support networks.

"You get to get better..." Yes, but again this is not without extensive support and effort. Every part of my day is weighed and measured. I have made many sacrifices of time and money to do everything I can to heal and improve, those efforts are paying off, but it is not without cost. I exist in a state of pain. That pain can wax and wane with the barometer pressure, dietary changes,  temperature, and even hydration levels. Here's the kicker, I am through less than 1/2 of my lifespan- I will live much of my life struggling with executive function issues, and when it gets bad, even basic bodily functions.

You go on to share your desires, despite what is best for others, with "I want...' Great, so do the rest of us. We all want but all of us must weigh the responsibility of what we want with our capacity. Endangering others for your wants is unacceptable. Period. That's it. You do not get to endanger others for your wants. Wants are not needs.

I love you. I know you are hurting, but I beg you to never assume that you understand the full reality of another persons life. You can share, empathize, and be with them, but you are not them. You can share, but you do not know. As long as you continue to use what you do know to justify your own actions and excuse your wants you will never know. Knowing is placing the needs of others over your own wants. Knowing is moving, even if it hurts, because it will be worth it. Knowing is showing love and hiding pain when it hurts the most because someone else needs the space for a time to grieve themselves. Only by working to really know can we actually see one another as they are, and not as we are.

-Me

To my surgeon

Dr. [AwesomeSauce];

In May of 2015 you treated me for a cerebellum based meningioma tumor.  You saved my life.  I wanted to thank you for your time, attention, and professionalism in ensuring my ability to live and function on any level.

The past two years have been a journey of ups and downs as I confront limitations, face social stigma, and learn to cope with continued challenges.  One challenge that exacerbated the others is that of being able to seek and find appropriate aftercare and support.  I wrote your office in early 2016 and expressed my dissatisfaction with the follow-up care and communication received from one of your associated nurse practitioners, [hewhoshallnotbenamed].  I was put into contact with [clearandconcise] and have appreciated her candor and clarity.  The difference in care is both startling and disheartening when the two experiences are contrasted.  [clearandconcise]  is exceptional both in her knowledge and in her clear communication.  While I struggle with comprehension, my husband was able to understand what [clearandconcise]  explained, even though it varied greatly from what [hewhoshallnotbenamed]  had communicated with us at initial follow-up appointments.

Through many appointments and working with an exceptional team of professionals at [myhomeawayfromhome], I have been able to adapt to functioning at a basic and simplified level.  I am working with vocational rehabilitation to recover professionally, and with a team of specialists to recover functionally.  I have progressed through physical therapy and occupational therapy and can physically function in most of my daily life.  I continue to work with speech pathology to recover cognitive function and the layered reasoning necessary for higher levels of interaction.  I have adapted to being completely deaf on my left side and have learned to understand the origins and nature of my continued tinnitus.  I am encouraged by assessments and support from [sweetestmanintheworld], the neuropsychologist that you referred me to see.

Over this journey I have found many things; 1. A qualified and experienced neurosurgeon is absolutely vital, 2. Goals and consistent, sustained effort by the patient are necessary, and 3. Recovery is best done with a team of experienced and supportive professionals who help to identify and maintain optimum recovery.  I find that many do not experience adequate recovery services and am concerned that while focused on the surgery itself, access to such services is not utilized as effectively as it can be.  Recovery is based upon two standards; physical recovery from surgery, and then functional recovery with any associated limits and challenges of having a brain injury.  It is this second level of recovery that is currently being underserved.

I am asking for your help in educating and sharing with the medical profession that what is being experienced by patients as “normal” is far below the best interests of the patient.  Simple solutions such as appropriate patient education regarding follow-up care of functional challenges, and monitoring of that care by supervising doctors is lacking.  I understand my case is extreme, that it is not common practice for surgeons to be found through the emergency room and that most patients are referred by other professionals.  What I continue to see from the patient perspective is that the trend to disregard or ignore functional healing is common for those doctors as well.  I am privileged to associate with a variety of patients from across the world, many of whom repeatedly express feelings of abandonment, loss, and disillusionment from their initial providers.  They stop seeking help or searching for answers, leading to a decrease in quality of life and fear of follow-up care and procedures.

My surgery and recovery are a pivotal miracle in my life. Your role as my neurosurgeon remains one of my greatest blessings, my healthcare team is another.  I believe without either of those two components I would not be looking forward to a life of decent quality.  I grieve for patients who express that they avoid appointments because they fear being ignored, dismissed, or hearing of another procedure.  None of these options is ideal and all result in decreased outcomes for brain tumor patients.  The question remains, how do we solve this?

I believe that as patients and providers work cooperatively and engage in open dialogue we can improve outcomes for patients, increase functionality post-treatment, and help both patient and provider engage fully in regaining optimum quality of life.  I ask your help in educating providers on providing follow-up supportive care, and creating a team based approach to functional recovery.  I am not sure of the proper format for this type of conversation, in the social work field I would advocate for presenting at local conferences and meetings of professionals.  Maybe the answer, in this case, is to begin one office at a time.  I propose a three-fold solution.

1.       Patients are provided reviewed and approved information regarding aftercare and recovery, to be given at various points along the healing path such as 14 days, three months, six months, and annually as needed.  Correct information helps answer questions that arise after appointments are concluded and gives patients something tangible to hold on to.

2.       Patients are provided access to and information about recovery supports such as speech pathologists, occupational therapists, audiologists, and physical therapists at their 14 day follow-up appointment. It is very easy to compile information of local providers and provide such information to patients to use as needed.  Patients often do not know what questions to ask or what is even possible; by offering the information providers demonstrate patient concern.

3.       At the earliest opportunity, providers and patients must identify a contact professional who will co-ordinate all care and ensure that the patient receives timely responses for any medication and follow-up care concerns.  This provider receives release of information for all reports and appointments so as to ensure that the patient is maintaining a positive healing trajectory.  This works to allow specialty providers to do what they do best and leaves general providers all the tools that they require to adequately do their job, improving outcomes for both patients and providers.

The changes I have outlined are simple and easy to maintain, taking no more time for providers and helping patients avoid medical burnout, improving outcomes for everyone.  Thank you for your care, for my life, and for taking care of people like me.

I Am A Faker: The Reality of Living with a Disability

There is so much misinformation and propaganda out in the world regarding the disabled. I hear people talk about the ones that "fake it" and social programs such as SSDI are called "entitlements". Disability Fakers by the Mighty  Being judged without people knowing my story is awful. I worked for 20 years. I have held a job since the time I was 16 years old. To be part of a demographic spoken of as expendable or a parasitic is an awful feeling. Here is the reality, I am different.

I am different. My body is different, my mind works differently, and my ability to recover and respond to situations is very different. I don't fit a mold. I don't fit in the nine-to-five, measured box that is comfortable for society. Interacting with me is harder, I don't get out much, I am not the life of the party. I am not charming and exciting to be around. I will not improve your social cache. Knowing me offers no financial improvement, no special bonus points, no benefit other than my company, but that does not make me worthless or expendable.

I am quiet, unassuming, going about my day which consists of rehabilitations activities, medical appointments, maintaining what part of my life I can, and trying to get better. I am lucky and blessed. I know who I am and what I can do if given the opportunity, but I am still healing. The damage from my brain tumor was extensive and to a part of my brain that is vital to function. I am working to improve and I am so very grateful that I have that opportunity that is denied to others.  I know and have lost dear friends who had no hope of improvement. 

Every three months or so I have to complete another packet from my insurance company assessing my skill level to see if I can return to work; it has been 19 months from the time of my emergency brain surgery. Along with questions regarding daily activities I must submit information from each of my specialists- I see six, soon to be seven medical providers. I must have an assessment of my personal skills completed and I am required to provide documentation in writing with notes and contact information. It takes me days to compile this even though I save copies of everything. No part of my life is left unexplored, no information is too invasive or off limits. I have no private life, everybody knows everything.

Every day I fake it. I fake not hurting, I fake my smile. I fake understanding when things move too fast for me. I fake being thoughtful when I am so overwhelmed I cannot respond without stuttering or freezing up. I fake being calm when I have a new range of symptoms. I fake it at the grocery store where I plot my list well in advance and go during my best time of day when there are likely to be fewer people that I have to interact with.

I get up in the morning and make sure that the first two things I do are to get dressed and make my bed. Why? Because if nothing else goes right it at least keeps me moving forward and less likely to burrow back into bed to hide from the pain. I do have pain. On a scale of 1-10 I live at around a 6, when I let myself think about it. I try to think about it as little as possible. I schedule my day with regulated therapies and a rigid schedule that keeps me moving forward. I have regular ands frequent breaks and try to hold to the advice of my rehab team by setting my schedule "in Jell-o". I try to allow flexibility where I can but with the brain trauma the more predictable my day is, the less stress it creates for me.

I fake competence in any area, doing enough to get through it. I used to excel as a student and took pride in learning for the joy of it. I loved doing research and presenting my findings to my co-workers, preparing handouts and teaching tools for those that I served and worked with. Now, I am struggling to hold on to a "B"- and it is taking everything I have to attend online classes at half-time. It takes me two to three times as long to grasp even a part of what I could learn by reading it through once. I fake humor about the pain, about being dumb, about getting through this and holding on to the lessons that I have learned. I have already done more than what anyone expected but still I "fake it".

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.

Avoid Dis-sing Ability



Many forms of discrimination exist, racism, sexism, even ageism. They all look at the outside description, not the person. Essentially, seeing a category and not the individual. For example I am  white, a female, and in middle age. These facts are true, but they do not make up or measure who I am. There is one category, still in the shadows, little talked about but very much present in our educational and employment centers; ableism. Below, I offer a number of items and articles available to understand other situations, points of view and perspectives.

One woman offers her perspective on this as she lives in the "grey areas". Some days are good, others are not. Living My Life In The Grey Area

Additionally many resources work to make disability law accessible and easily understood by both providers of services and those requiring accommodations. Discrimination and Disability Law

Employers can benefit the community and avoid costly litigation by staying informed of laws and statutes that govern hiring and employment practices. Mighty Works

My realm of disability rests mainly in my challenges with a severe Traumatic Brain Injury. I am not alone. TBI As those with concussive episodes, PTSD, and other causes of neurological trauma heal, it is vital that we been seen as individuals and not placed on a shelf, out of the way, to wait quietly until we fade away. That's not me. It's never been me and it will not ever be me. I am going to push as far as I can to stretch my abilities and see how far the brain really can heal.

All I ask, all anyone really asks, is to be seen as a person, an individual. If you keep that in mind, in all your interactions, to see the humanity, the person, you will do well. When we lose our view of each other as individuals, we lose a part of ourselves and amazing opportunities for increased understanding and growth. 

God bless you. Keep going, keep healing. You can do this!

(You Can) Go Your Own Way

Well, it has happened. Sitting talking about goals and life and education planning post injury I ran into a huge wall of "you can't". Not that I couldn't meet the educational requirements, or that I couldn't perform the functions required. The issue rests on the fact that I can not take and absorb the amount of information required as fast as the program, unmodified, dictates. This timeline is dictated only by the administrators and in no way reflects the educational needs or requirements of the field or national program standards.

In speaking with student services I found I could have accommodations for note taking, for test times. However, as the program is dictated, it automatically eliminates anyone with more disabilities than those mentioned. I can not take the classes other ways. I can not change the amount of course work needed each term (up to 21 credit hours in one semester) by extending the program. When it was pointed out how it could be done, the answer simply was "That's not the way we do it."

I was then directed to look at other options. Options for education in areas with little to no economic value and opportunity for job growth. It was like being shown the door and denied the chance to perform in a way where I can benefit others and be an asset, using my strengths, past experiences, and education.

Currently the school and its program administrators refuse to accommodate my disability. They refuse to think outside the box or even consider options where it has been demonstrated accommodations are possible. "That's not the way we do it."

I am grateful that when in a similar position I possessed the ability to help and meet the needs of my students; whether medical, emotional, or technical. I was given the freedom in my program to train in a way that met the needs of the student and prepared them for their chosen profession, despite any presenting challenges. Working with children in foster care we encouraged individualization and wanted to partner with clients and families in ways that built lasting skills and positive change.

This is who we are. This is who the caretakers and providers are. Not someone who says "That's not the way we do it." Caretakers say, "Let's get it done."

So, to you, you who refuse to look at anything other than "the way we do it", congratulations, I am now completely pissed off.

I had heard of Disability Discrimination, now I have seen its ugly face. Fascinating and discouraging that it is within the field of educating the next generation of our care providers.

How dare you say what I can or can not accomplish? You don't know me. You never will, as long as you refuse to actually work to make things better. Sit in your ivory tower, you will miss out on the beauty of meeting someone outside your perfect world that might actually open you up to seeing others as individuals. Disabled persons are not objects in your way. We are not incapable. If you refuse to accept us as individuals, you will never know what we can be. We know. We know who we are. The ones who choose to see it will be gifted with a world view more open and capable than you will ever let yourself see. I know who I am.

Hold on to your hat, I'm getting it done.

It Figures

You know how people talk about how hard it is to live and function on disability? Yeah, they are not kidding. Here are some things I have learned so far on this little journey of mine.

1. If you look well, you probably don't feel well. I am more likely to put on concealer and makeup on days when I feel and look like garbage. I use a lot of concealer to cover circles under my eyes, blush to add some color to my cheeks, and lots of bronzer. (You can thank my makeup fetish pre-injury for my stores of makeup; lets face it, I couldn't buy it all now.) Please don't punish people for not "looking" disabled.
2. Whatever is hardest for you is the next thing you need to do. Finding the right kind of help is not easy, navigating the phone trees and gate keepers is even harder. Making things hardest for the most vulnerable in our population is just awful. Why must it be so hard to find help? I cant tell you the level of frustration I experience when, despite knowing my issues I am told by someone offering assistance "Well, its really very obvious." No, no its not. Not to me. nothing is obvious to me and to speak to me in such a way simply tells me that you didn't bother to read in my file how it is best to ensure that I need vital information. You forgot about me as an individual and started counting me as a number.
   
3. Prove who you are. Speaking is still hard, remembering basic information and numbers is even harder. Every time I contact any support services I must first prove who I am by reviewing full name, birthdate, address, phone number listed on the account which could be any of our family phones, and so much other information made up of a collection of random life milestones. I have to prewrite my questions so that by the time I am done trying to prove who I am, I can ask and get the right answers to my questions.
4. A person can get lost standing in an open room. This one is way too easy for me to accomplish. I happened for me the other day. I can be standing in one place, know exactly where I am, but if the environment changes, such as adding groups of people, I am lost. Too much to look at. Too much going on. Going out with loved ones is not just about the energy it takes to spend time with someone you care for, its about knowingly putting yourself in a position to be visually and auditorially assaulted. I get the extra bonus of trying to think around these things to attempt to focus in a meaningful way on the other person.
5. I have magical skills of becoming tired just doing nothing. It takes a special talent for becoming overwhelmed to fatigue not doing anything. Only, that's not really true. The problem is that my brain is really trying to do everything. With no filter to ignore some of the distractions out in the world, I am trying to absorb every sight, sound, and stimulus at the same level of intensity. I have no filter. I find I am not surprised when kids get confused, because I do. What we expect of new little people is really unfair to them.
   
6. Even if you walked the same path, you can never fully appreciate someone's journey. Meningioma is the most common form of brain tumor. Not all tumors are created equally, thank goodness! Even if two people share the same type of brain tumor the size, location, age, and impact vary greatly from patient to patient. Listening with empathy to what the other person is telling you becomes vital. Showing concern for who they are and the needs they express is the only way we can really learn and show another person that we care. Additionally accept that if the other person says you don't really understand, guess what? You don't. You can't and neither can I. So set aside your own ego and listen with your heart.

I have been so incredibly blessed with the family and friends that I have. What hope and what joy they bring into my life. I know that God lives. I know He is aware of each of us and the journey we are undertaking. I know that He possesses perfect empathy and love. God bless and keep you in your trials.

Roadblocks

Roadblocks and delays where I look. Hope and possible improvement offered and then more delays and barriers put up. It amazes me that resources made to help the disabled are so difficult to navigate and comprehend. Locating help with medications, co-pays, explanation of benefits, social resources; nothing is collected in a reasonable or accessible manner. So, here you go:

Medicaid Application

Student Loan Discharge

Cell Phone: Free

Community Resources for Disability

Transportation Assistance

Vacation Travel

I rely on help from well people and trust the office staff and professionals to be able to point me in the right direction. When I can't understand the next step or if the ball is dropped, I am lost. Completely unable to get myself out of limbo. I wait and work. I feel like I am hitting plateaus with my care. Then, there is the guilt.

I try to accept that it is there, but I also resent it. I worry about what my sons will remember. Will they remember mom that couldn't play with them or run with them? Or, will they remember that mom didn't quit or give up and pushed them to do their best?

Well, those are questions for another day. Today, I will do what I can and try my best to be aware and engaged with my boys. They are everything. I love them. God bless and keep you.

As of today

As of today I am considered fully disabled.

As of today I am admitting to myself how big this whole challenge has been.

As of today I will move to accept that I have limits.

As of today I resolve to do what I can to move beyond and through those limits.

As of today I choose to embrace my children more completely.

As of today I choose to be more present in the moment, this is all I have.

 

As of today I choose to let my life be lived, as much as it can.

As of today I will move forward, to the best of my ability, trying to make my corner of the world better.

As of today I accept my efforts for what they are, the best I have to offer right now.

As of today I will own my life and live.

Second Chances

When, in the course of your life, you are given an opportunity to have a second chance, to rewrite your story, to rethink who and what you expect and believe yourself to be, it leaves a sense of being unwilling to settle for the status quo. Talking to a dear friend of mine, we discussed whether this is my life now. She also has health concerns and is frustrated that her primary care doctor is not taking her concerns seriously.

"I refuse to accept that this is my life now; that I will always hurt and this is just the way it is."

I love that. I love that she said that and that her focus is on making a better life. One where she doesn't settle for the easy answers.

 

I am facing many changes. With my limitations I cannot go back to my career. I cannot offer support and make decisions with enough proficiency to help others the way I did prior to surgery. It is even possible that just prior to surgery the extreme levels of pressure my brain was under from low CSF and the tumor were creating a significant amount of damage. (We are working to find answers now.)

I am unwilling to accept the easy answers. I am on disability, that is a reality I am facing right now. Facing my challenges head on has forced me to really look at where I am. This is not where I am content to stay.

I challenge myself regularly now. It is simple and maybe not what others may consider challenging, but it is mine. My journey. My path. It doesn't have to measure up to any other expectations. I fully own my journey and I am coming to appreciate all that I am learning.

Second chances offer opportunity to drastically change your life path.

I am embracing this change.

I am working to address this in many ways; both personally and in my relationships with others. I refuse to accept the polite and unspoken things that I, in an effort to avoid confrontation, generally avoid. I speak up. I say what is on my mind, and I have little tolerance for taking the easy route.

I am looking at needing a lot of job retraining and rehabilitation. I can accept this. I can look at it as a barrier or as a challenge to be overcome. I am currently working with a vocational rehabilitation councilor. I don't have many options, and all require more healing and some education.

I am refusing to let my relationships just be comfortable. I want no regrets, no unspoken conversations. I want to talk about the hard stuff and find resolution. I am confronting past hurts and healing traumas pushed aside by other concerns.

I am living fully in the moment and embracing all the time I have. I practice yoga, mindfulness, and make every effort to remain emotionally present in my own space. If I have pain, I accept it. Joy, I embrace it.

I am not perfect. I have many flaws that I am aware of and working to change. I am so grateful for this chance. For the opportunity to learn and grow in this way. My days are not easy. The pain is hard; both the emotional and physical pain. I would not wish this path on anyone, but after what I have gone through, I am grateful. I am blessed. With my challenges I am working to get to where I can say, fully and with every intent of my heart,

"I refuse to accept that this is my life now."

I will be better. I will do better. I will live the life I have been granted and leave the world better for my very life. God is good, may He bless and keep you.