Room at the Inn or The Night Baby Jesus Came to Stay

The doorbell rang just as we sat down to read. Luke 2, the story of the birth of Jesus was the plan. Wondering who it could be we opened the door, only to stare, stumped at the baby in the manger.

Baby Jesus was on our doorstep. No letter, no note, no idea of why he had come or who had put him there.

"So , what do we do with him?"
"Well, we start by bringing him inside."

There it is, the statement that caught my attention, "we start by bringing him inside". Isn't that the way it all begins? Simply by letting Christ into our hearts, into our lives.

Christmas Eve night and all the next day I pondered the meaning of the question of whether I let Christ into my life. Do I make room at my inn?

We searched for who he might belong to. My sons were certain that someone had given baby Jesus to us, I cautioned them that we had to be sure to try to find his owners. The quality and care with which he was wrapped had me concerned that he belonged in someone's beautiful nativity display. The manger was handmade, animal skins lined the bed, and the babe was wrapped in swaddling clothes. Herbs and hay padded the manger, making a soft and safe place for the baby to lay. Care and love was shown in every part of the bed. I think that Joseph and Mary would have shown such care, still I feared that someone was missing a vital piece to their holiday this year.

Christmas night I received a message- Baby Jesus had come to stay for the next year. A reminder to make room at our inn. After focusing on the beauty of the gift of that life and offering a year of random acts of service, we will have the opportunity to pass him on. We will choose a family and gift baby Jesus to them, a note will explain all, what a fun way to remember what is important.

I pray that my sons will always remember the year that baby Jesus came to stay. God bless and keep you.

Is Medical Marijuana a Viable Alternative for Pain Management?

 

Pain is a constant in my life. I live every moment breathing and working through this layer of distraction so that I can engage and function as normally as possible. I have worked with my doctors to exhaust any and all tools for pain management but the options available fall short. In my research on pain management tools to use in addition to a regimen of meditation and mindfulness, yoga, physical therapy, occupational therapy, nutritional decisions and physical activity I continually come across the idea of medical cannabis as a pain management tool. This is an emotionally charged subject and has been the cause for recent social upheaval and political discussion. Misinformation is rife and everyone seems to have an opinion. Voices cry on every side of whether the use of prescription cannabis is necessary. Some insist that medical need is an excuse for habitual users to avoid legal prosecution. Others argue that medical cannabis is the only option for competent pain relief without violent side-effects. Both sides are impassioned and express the belief that they are solely right. So, where is the resolution? Is there middle ground on the issue of medical cannabis?

I started my search to first find reputable resources that offer an unbiased and real look at the issue; science journals and medical texts often offer the most current information. I found many articles published by the National Institute of Health in their effort to share information as part of their report on activities and research.  In their article, “Marijuana and Cannabinoids”, the NIH explores the connection and statistics given in 2015 regarding what is known.  Currently, there are three classes of cannabinoids undergoing research as to the implications on management of pain for various conditions and disorders. In the year 2015 a total of $111 million dollars was spent to research funding regarding the use and properties of medical cannabis. A total of 49 projects currently underway are examining the therapeutic benefit of cannabinoids, with a total of $21 million dollars in funding provided in 2015. (“Marijuana and Cannabinoids”) Given these statistics and the vast amount of funds currently dedicated to solving these concerns I am left to conclude that there is enough encouraging evidence to support the use of cannabinoids as pain management tools.  So, why is there confusion? It appears to me that the research is being done, studies relating to neurobehavior and development are encouraging, and yet there remains a steady stream of vitriol against the idea of legalizing medical marijuana.

I found in a grant connected to this article that further studies are being conducted and about grant options available by the National Institute of Health that support the supposition that cannabis offers therapeutic benefit for chronic pain. According to the NIH, “Pain is a substantive health issue, where it is estimated that 100 million Americans suffer from chronic pain. Opioids have been increasingly used to treat chronic pain, and there has been an increase in the number of opiod prescriptions, which has caused a noncommitant rise in prescription opioid abuse. While opioids may be effective in treating chronic pain in some cases, other treatment options are desperately needed.” (“Developing the Therapeutic Potential”) I fall into this category and can offer real experiences of multiple opiates being used to mitigate pain and induce a sedative effect, allowing my body to recover and heal. Following the acute phase of my trauma I then had to find an alternative way to cope with the pain, more than a year later, multiple appointments, and alternative pain management options continue to leave me coping with daily pain. The problem of living with chronic pain has far reaching effects, leaving no part of a person’s life untouched. Additionally, side effects such as addiction and dependence occur with prescription medications at an increasing rate for patients. In recognition of the need for help and support of patients, multiple agencies have joined together to pursue options and share findings; agencies such as the National Institute on Drug Abuse, the National Cancer Institute, the National institute of Neurological Disorders and Stroke and many others (“Developing the Therapeutic Potential”). Specifically, research is being reviewed for study in areas of inflammation and pain. Review is set to evaluate therapeutic applications of cannabidoils in the specific areas of chemotherapy induced peripheral neuropathy, pain perception and general analgesia (“Developing the Therapeutic Potential”).  What the grant opportunities demonstrate is that multiple support agencies recognize the need for non-synthetic options that integrate well with the central and peripheral nervous system. Current pharmacological options are not meeting the need and are creating additional problems for patients and society in general. Patients need and deserve answers and options that do not create side effects such as addiction and dependence.

The Drug Enforcement Agency, or DEA, recently made some remarks concerning the legal status of medical marijuana. In a report they refused to alter the federal legal status of marijuana.  Studies cited by the DEA, as recently as August 2016, maintain that marijuana is a Schedule 1 drug. (Leger) Schedule 1 drugs are drugs that offer no verifiable medical properties and are thus considered to be used for recreational purposes only. In the same release of information the DEA indicates it has found that marijuana cannot truly be considered a “gateway drug” (Leger).  A gateway drug is one that leads to further experimentation and use of additional substances by the user. Going by what the DEA claims I am left to conclude that they have no evidentiary support to change the legal status of medical cannabidoils and until substantive research findings are produced to dispute that claim, there will be no change in the federal status of marijuana. Currently any use of cannabis is illegal, despite individual states making its use pharmacologically approved. Federal law trumps individual state mandate. The DEA makes allowances here and does not pursue prosecution of medical users, despite having the law on their side to do so. This ambivalent stance is confusing and leaves patients at a loss for where to go and what to do. After reviewing the statements made by the DEA I am left feeling like I have whiplash. On one side they refuse to recognize potential therapeutic benefit, on the other they refuse to pursue enforcing the laws that are in place to regulate the use of illicit drugs.  There has been no indication of a timeline or what may cause them to reconsider either the Schedule 1 classification or pursuit of prosecution for users. What has been created here is an unenforced law, one that weakens the status and value of the DEA in their unwillingness to make a decision about this issue.  I wondered what reasoning may be contributing to the position of the DEA; I turned to the FDA, the Food and Drug Administration.

In April of 2016 Bertha Madras, an expert in the field of medical pharmacology and biology, helped to clarify the position of medical cannabis and the FDA, or Food and Drug Administration.   Madras clearly explains that according to the definition and requirements of pharmacological drugs, cannabis simply does not fit the profile for medicine (Madras).  The FDA holds to five primary requirements for a drug. Those requirements include:

1.      Drug chemistry that is known, consistent, and replicable.

2.      Adequate safety studies have been conducted and reviewed.

3.      Sufficient number of controlled studies documenting measurable value.

4.      It must gain acceptance by qualified experts.

5.      Evidence and documentation must be widely available.  

Looking at the requirements for the FDA it then becomes easy to see why cannabidoils have not yet gained recognition from a legal standing as medicine (Madras). Like any flowering plant, cannabis plants and buds all produce differently in relation to potency, chemistry, and even vary by plant type. The NIH is currently working to address the need for testing and safety studies even while it works to distill and refine various cannabidoils such as THC and CBD. Acting to refine the oils acts to make effort to profile consistent chemistry and determine value to the oils themselves. After this process is refined and completed then concerns such as dosage and potency can be addressed and medical trials can begin. Increasing use of studies and grants will either prove or disprove that medical cannabis is an option for patients. 

Continued testing and refinement of the process is needed to help patients and provide safe medical supervision.  I found that in June 24, 2015, Dr. Nora Volkow testified before the Senate regarding International Narcotics Control. In her report she reviewed the limits and challenges of conducting medical research, potential outcomes and promising studies, and also reviewed what is currently being done to address the needs of patients. At that time, studies on specific neurological conditions offer glimmers of hope but have yet to offer substantive proof that marijuana has therapeutic properties (“Testimony of Nora D. Volkow”). Dr. Volkow went on to further explain that while some preliminary studies have been done into various cannabidoils, specific oils seem to be the key in treating chronic pain. The emerging research supports two emerging oils that relate the most to therapeutic benefit, CBD oil and THC. THC is the cannabidoil that contributes to the hallucinogenic effects, the “high” of marijuana use.  The CBD oil is being used currently as a plant extract base by some patients for regulation of seizures and other neurological trauma. Because it has no hallucinogenic effects, CBD oil is not illegal, nor is its use regulated. Studies into the effectiveness of CBD oil with chronic pain, however, are not promising. There has been no indication, to date, that CBD oil without THC offers any analgesic therapeutic benefit. There have been preliminary studies that demonstrate that THC and CBD oil, when used together, offer an analgesic effect for central and peripheral neuropathic pain (“Testimony of Nora D. Valkov”).  Peripheral neuropathy is a potential side effect of neurotrauma and surgery. Therefore a patient can survive and recover from a violent or traumatic injury such as concussion or brain tumor only to have the nervous system flare up. No known trigger, no known cure. The sensory nerves of the body simply fire as if they have been activated by some unknown trauma. I looked into providers. Who is using cannabidoils with patients?

With an excellent reputation for patient care and breakthrough treatment, The Mayo Clinic has forwarded studies into the use of medical marijuana and patient care. In a web article the Mayo Clinic outlines some of what they are doing for patients to fight the battle of peripheral neuropathy and other chronic pain conditions experienced by patients (“Medical Marijuana”).  Cannabidoils are seeing accepted use with patients experiencing such complications as seizure disorders, Amytropic Lateral  Sclerosis (ALS), and even chronic pain. According to the Mayo Clinic “Medical marijuana is marijuana used to treat disease or relieve symptoms. Marijuana is made from the dried leaved and buds of the cannabis sativa plant. It can be smoked, inhaled, or ingested in food or tea. Medical marijuana is also available as a pill or oil.” (“Medical Marijuana”).  Providers are reaching past recognized legal structure to provide patient care. A medical provider, seen as an authority in patient care and treatment, is using an unrecognized form of treatment for patients even while the regulating authorities refuse to make changes in classification and legal standing. 

Further supporting the idea that providers are moving beyond legal boundaries is the research being done in behalf of the National Cancer Institute. Working with complementary and adjunctive medicine, studies are being conducted into the use of cannabis and its impact on the side effects of cancer related treatment. Use of THC and CBD are showing a positive impact for patients experiencing such complications as loss of appetite, pain, and depression while undergoing chemotherapy (“Cannabis and Cannabinoids”). Along with alternative therapies such as massage and acupuncture, treatment of side effects with cannabis is currently being used to help patients in recovery. Initial findings support the idea that, working through the central nervous system and immune system, cannabidoil is able to have a therapeutic effect upon the body. Since these systems are both largely affected in cancer treatment, the benefits demonstrated to patients indicate that cannabis is effective in treatment (“Cannabis and Cannabinoids”).

What can I conclude based upon all the documentation and research being performed? What am I able to determine since recognized medical authorities are using medical cannabis in treatment and recovery, despite the legal status being one of a controlled Schedule 1 drug? Can medical marijuana be an option for patients who suffer from chronic pain? Maybe. The answer is, maybe. That is all that research and information can tell us at this time. Indications are enough to continue to fund research and development of dosage amounts and efficacy studies. Regulating agencies continue to be hesitant to change legal status due to lack of safety studies and sufficient data. Patients and providers are required to go outside recognized medical models because the options, opiates and NSAIDS, simply do not meet the needs of patients. In thinking about my own experiences and the possible implications, I am willing to consider the options and will simply give it more time. Medical providers and researchers are doing their best to find answers, patients are doing their best to live and function, and regulating agencies are making efforts to be good stewards in protecting the public. Patience and empathy are required as everyone works to do their best in finding answers. 

Resources:

“Developing the Therapeutic Potential of the Endocannabidoil System for Pain Treatment. PA-15-188.” NIH, Office of Extramural Research.  www.grants.nih.gov/grants/guide/pa-files/PA-15-188.html . Web. November 2016.

Leger, Donna Leinwand. “Marijuana to remain illegal under federal law, DEA says.” USA Today. August 11, 2016. www.usatoday.com/story/news/2016/08/11

Madras, Bertha. “5 Reasons Marijuana is not Medicine.” The Washington Post. April 29, 2016. www.washingtonpost.com/news/in-theory/wp/2016/04/29/5-reasons-marijuana-is-not-medicine. Web. November 2016.

 “Marijuana and Cannabinoids.” NIH, National Institute of Health.  www.drugabuse.gov/drugs-abuse/marijuana/nih-research-marijuana-cannabinoids. Web. November 2016.

 “Medical Marijuana.” Mayo Clinic. Healthy Lifestyle Consumer health. http://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855. November 2016.

 “Testimony of Nora D. Volkow on Cannabidoil Barriers to Research and Potential Medical Benefits Before Senate Caucus on International Narcotics Control.” NIH, National Institute of Health.  http://www.hhs.gov/about/agencies/asl/testimony/2015-06/cannabidiol-barriers-to-research-and-potential-medical-benefits/index.html. Web. November 2016.

“Cannabis and Cannabinoids- Health Professionals Version.” NIH: National Cancer Institute. http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/medical-marijuana-and-cannabinoids/ Web. November 2016.

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.

 

What Makes a Champion

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.

God bless and keep you in His arms.

Being Whole

I find that in many ways the body and brain and surprisingly resilient. Many challenges and limitations can and are overcome on a daily basis. You hear stories of the body repairing and healing itself, without medical intervention. Doing what it needs to do to grow, function, and thrive.

I learn so much each time I attend my rehabilitation/therapy sessions. I learn ways to stay healthy, trigger healing body responses, and diffuse stress. Learning a whole body approach after injury is vital in maintaining resiliency and continuing to have hope. Keeping a positive outlook and having hope helps both my brain and body in the healing process. Many chemicals and hormones contribute to this healing in recovery.

The brain and body require hormones and chemicals in order to perform primary functions. One of these vital components is the hormone dopamine. Dopamine is essential in the body performing at its most basic and healthy levels. Dopamine. The body produces dopamine and is able to use it in healthy brain and body function.

Dopamine production in the brain is a singular chemical because there is not only one way for it to be produced/developed. Dopamine production is possible using a variety of triggering mechanisms. The triggers of dopamine may be related to accomplishment, health and fitness, sensory experiences, and even study and discovery. For a complete and whole body approach it is best to have multiple tools at your disposal to trigger dopamine production.

Examples of triggers for dopamine production may include exercise and sleep as part of the health/body triggers for dopamine production. Lack of sleep, on the other hand, leads to lower and decreased levels of dopamine production. In the short term this can be augmented by increased triggers in other areas, over the long term it can lead to chronic stress and disease in the body. 

For me, a regular and planned approach to triggering healthy dopamine production offers the most benefit.

• Accomplishment/Achievement may include such triggers as check lists, small steps toward larger goals, screen games such as Candy Crush, and even tracking days of a particular accomplishment. A friend of mine has a kitchen chart where she tracks numbers of days her kitchen has been cleaned each night. How can you track your accomplishments? What steps can you take, or are you already taking, that help you to trigger a sense of achievement?
• Health and Fitness are triggered by exercise, defined as 20-30 minutes per day of exertion. Sleep is also a producer of dopamine production. This requires healthy sleep, in the range of at least 7-8 hours per night. This amount may increase based upon personal need. For example last year, just after surgery I slept for approximately 16-18 hours per day. I still require extra sleep in the range of 12-13 hours per day.
• Sensory Experience includes such triggers as enjoyable foods (comfort food), listening to pleasing music, pleasant textures, or pleasurable emotions. With my decrease in taste and smell I no longer desire the flavor of ice cream but the temperature creates a chill and calms and cools my brain. A brain freeze can actually serve to offer pain relief from the heat of summer. Who knew? So, I don't care for the taste but the temperature is a relief and can serve as a trigger for dopamine production.
• Study and Discovery serve to release dopamine through meditation, prayer, mindfulness, creative pursuits such as writing, drawing, painting. Exploration of self and the world around us can act to help us both stay engaged with others and ourselves. Fascinating to learn that as I work to document my experiences in recovery I am actually working to create a prime environment for healing and healthy function. Amazing.

The more I learn in recovery both about my condition and the systems put in place by the body to compensate and heal from them, well, the more hope I have for a more complete recovery for myself and others. As we learn what the body and brain are capable of we can learn ways to trigger the necessary responses and offer hope for traumatic brain injury, brain tumor recovery, and even mental illness treatment.

God is good and I feel and see so much how His small mercies have served to create an environment perfect for my healing. I am making progress past the point of previous expectation. The mind and body are capable of more than we know. What and incredible miracle and blessing.

God bless and keep you.

Avoidance

Definition of avoidance. 1 obsolete a : an action of emptying, vacating, or clearing away b : outlet. 2 : annulment 1. 3 : an act or practice of avoiding or withdrawing from something.

I am fully engaged in "the act or practice of withdrawing from something." Seriously, once summer hits it is all a game of trying to not fall too much behind. Visits from family and friends, my annual tests and exams, as well as making plans for the next three years, well, it gets really busy. So much has happened and there is a lot to update.

I am a middle aged, disabled college student.

I am enrolled in college. I am working with a vocational rehabilitation program to relearn the skills necessary to hold down a job and support others going through this challenge. I will be attending classes at a local school, mostly online, for the next two years. I am combining these efforts with my rehabilitation to help reduce my time out of the work force and am starting at very basic levels. I am pursuing an education in human resources with an eye toward working within the Americans with Disabilities Act for neuro-nontypical employees; autism and aspergers spectrum, traumatic brain injury, and post traumatic stress disorder.

Understanding and working within the framework of human resources I hope to make employability of disabled persons less intimidating and more accessible. Statistics show that while the disabled struggle with unemployment at much higher levels than the general population, despite capability, they often are model employees. They do not take as many days off of work, show attention to time and produce a good quality of work within the realm of their capabilities. I can use my 10 years of experience in working with disabilities and helping provide support, all while working within the framework needed for my limited capacities. Some skills I do not yet possess and some areas will require more healing and occupational therapy. I am focusing my next two years toward building this resiliency so that I am prepared and ready to contribute again.

Basically, I am making good use of my time to heal and move toward future goals. I am equal parts terrified and excited.

*Short note: My exams and evaluations show that I do have a 6mm residual tumor. It appears to be stable and my providers are not concerned about regrowth. I will have annual assessments to ensure that this does not change. I have follow-up referrals for neurological testing of my auditory nerves. (yay?)

Today

 

Some days I am here, here where I sit.
Locked in this place, taking up mass.
I can't move forward. I'm unable to do. 
I float and exist on the surface at most.
I try to get through it, I try to find hope.

Today, is a hard day. Today, I am grieving. 

Fears build up in my heart and I cry heavy tears.
I miss my before. My before all of this. 
Before all this happened I ran and I did.
Before I was busy. I rushed and I hurried.
Trampled and hassled, feeling quite scurried.

Today, is a hard day. Today, I am grieving. 

Not doing much, no progress to show.
No project or busy work measuring time.
Just this existence here, locked in my mind.
Not real. Out of touch. I can't grasp my life.
I lose the connections of people and time.

Today, is a hard day. Today, I am grieving. 

It is easy to feel shut out. I am here but not engaged.
Present and yet out of step.
So much in my mind, it's hard to live in this body.
I feel like I'm floating. Not connected, not real.
The sorrow wells up and it's all I can feel.

Today, is a hard day. Today, I am grieving. 


I'm grateful, I am, don't get me wrong.
I know I am blessed, that others cry too.
Today I am here, in this space, how are you?
Tell me your stories, your dreams and your fears.
Let me know I'm not alone when it's my time for tears. 

Today, is a hard day. Today, I am grieving. 

Just please be my friend.
Let me laugh. Let me cry.
And when I'm discouraged give me reasons to try.
I'll get there. I will. I'll do it all one day.
That day is not now, that is not today.

Today I am grieving, and that is ok.

Birthdays and Milestones

Exciting things. Coming up on my one year Craniversary, graduating from physical therapy, and now having a birthday that I once feared I would never see. It's a turning point. I'm relearning how to drive and practicing in the neighborhood. I have accepted that I will use a walking device for physical protection for the rest of my life, and am moving on to nicer canes than my pharmacy version. Progress is still slow and difficult but I am slowly able to do more each month. I am getting there, now I just need to figure out where "there" is.

God bless and keep you!

More New Updates for Brain Tumor Awareness Month

Exciting things continue to occur as Go Gray for May reaches its middle. New research and breakthroughs are being posted and it is reaching out to the most violent and aggressive forms of tumor, in ways that are minimally invasive. I am so excited for those who suffer from these even more aggressive forms of tumor and cancer.

Newly released information shares a way to treat glioblastoma and it is working. Increased clinical trials are the next step. Medscape: Glioblastoma and Virus Vaccines

Support groups also offer hope as this is the biggest indicator of long term quality of life for survivors.

Brain Trust Support

Brain Cancer Support

God bless you! You've got this.

WHO?!?

The World Health Organization just published a paper that will greatly impact the treatment of brain tumors and other central nervous system tumors. This is huge. The classification systems used currently affects how treatment is done and what options are open to patients. Despite differences in cellular construction of the tumor, many tumors may have been previously classified the same. With all the new research and studies being done I am so excited at this change. This opens the door to more focused treatments and options.

Amazing. Way to go WHO!

Central Nervous System Classifications

TBI Events

Who knew? With brain tumor awareness month happening now that while the cancer institutes/treatment centers don't have events, the brain injury groups do. Yes! If you are in the area, you may enjoy participating in the 5 K Walk, Run, or Roll. Super excited!

Brain Injury Association

Support Groups

Go Gray for May!

This Mothers Day

 

 

This is my first Mothers Day from surgery. My craniversary is right around the corner, 10 days after my birthday, just the end of this month. Not every day is perfect but there is something perfect in everyday. This. This is why I keep going. They drive me crazy sometimes, they are often too smart for their own good. My boys. The loves of my life.

 

I have been blessed to be able to be their mother for another year. I need help. Sometimes it takes a lot of help if I am going through more serious rehabilitation but these women and many others have pulled together in ways I never knew were possible. My sons have been held and loved when i could not do it. They have someone to run and play with them, because I cant always be there. They have learned that the love for them is infinite and from many sources.

 

I am deeply grateful for this past year and every year I will have to love and nurture these bright souls. This Mothers Day, I'm just grateful that I had the chance to keep going.