BEYOND THE MASK

Presented by Gary Shultz Family * BEYOND THE MASK IS NOW OPEN OCT 5-15

Patience is a virtue.

By Blog, News, Resources, Uncategorized

By Karl K.

Patience is a virtue.  The problem is that most of us do not have much of it.  The current generation has moved us into a state of instant gratification.  People want things now.

Not everyone believes that patience is a key to success.  I spoke to 80 students last year who wanted to major in Speech Pathology.  Many of them wanted to become therapists. At the close of the meeting, I wished all of them much luck, and a great career. And then, I stopped and said, “if you do not have great patience, you need to find something else to do.”  Short of knowledge and wisdom, patience is the most important behavior for a professional to display.

I see patience manifested every day.  I am now in an organization called BIND (Brain Injury Network of Dallas).  The directors and volunteers are the most patient people I have never been around!  They may need to hit their heads a few times after getting home, but you would never know it while they work.  They answer questions, help members walk and use a wheelchair, put up with constant interruptions, repeat instructions, and urge participants in a discussion to stay on the subject at hand.  I can tell you that I could not do what they do, and they do it very well.

As I write this blog, this week I am leading a group who wants to know how they can help others who have had language and speech difficulties.  The formal term is aphasia.  There are many ways to do that including the following:

  • Be patient
  • Use plenty of time
  • Establish the topic
  • Use “yes” and “no” questions
  • Repeat and ask for understanding

Patience is important to someone who needs help, but who cannot be rushed.  Have you ever said this:  “how long do I need to take this medicine?”  “How many visits to have to the doctor until I am healed?”  Some things are not in your control.  Some things cannot be rushed.  You cannot hurry plants to grow, make the weather cooler, or cram for test that you should have studied for weeks, but you did not.  You may be a Christian.  You pray that God will make something happen for your family.  He may, but the reality is that He works on his own time, not yours.

Experts explain that four steps are needed to increase patience with others.  

  1. Make yourself wait
  2. Stop doing things that are not important
  3. Be mindful of the things that make you impatient
  4. Relax and take deep breaths

Taken from the video “Always Thinking”, October 30, 2019

Think how the world would be a better place if we just use only 10% more patience.  How would you use that time?   You do not have answer right now.  Be patient!

The Silver Lining

By Blog, News, Resources

By Jenny T

BIND IN QUARANTINE 

While every brain injury is unique, most brain injury survivors experience social isolation at some point in their recovery which often leads to depression and anxiety. Some studies suggest that the risk for developing depression following a traumatic brain injury may be two to five times higher than in the rest of the population.

One of the most important functions of BIND is to reconnect those brain injury survivors with the community, and rehabilitate their ability to interact with others. This can only be accomplished through relationships.

Therefore,quarantine and social distancing, while absolutely necessary, directly oppose the BIND mission. However, people who survive brain injury tend to prove time and time again that we can overcome any obstacle set in our way. We believe This time in our history will be no different. 

Since a large percentage of BIND membership falls within the “high risk” category for COVID-19, we were among the first to follow CDC and WHO guidelines and “close the doors” of the physical clubhouse. But not without first creating and distributing care packages for our members, thanks to our staff, volunteers and program interns. 

Once it became evident that this quarantine would not be over quickly, it was decided to take the BIND program online, rather than leave our members once again feeling abandoned in the mire of loneliness. BIND volunteers and staff quickly began working remotely to provide virtual resources. After a few hiccups and some extra education we began to use Zoom and a private social media group to host our morning meetings, brain games, art classes, support groups, and many other activities, giving members near and far access to our service and a chance to participate in a community, albeit on a screen. 

Consequently, members that might have become more withdrawn and lost touch with one another have been able to maintain those vital connections. Member, Karl K. Says,”I used to attend BIND only one day a week, because I cannot drive, but now I am able to be here so much more and I love it, I really do.”  And Susan F. Stated that “ During this Global Pandemic, BIND has helped me to do something (other than nothing). M-F, I’m very active in BIND and am incredibly grateful and thankful. What a blessing BIND is to me – and since I’m doing “good stuff,”  my family is also grateful. and thankful——when I’m taken care of, the family is happy.  THAT IS  A TRUE GIFT!!”

Of course BIND members would rather be together, as everyone craves human interaction. For some, learning to use technology has been a struggle, others have fallen back into negative patterns such as staying in bed or arguing with caregivers and family members. This only highlights the need for the BIND family and the encouragement that can only come from someone who has “been there.” Various members, volunteers and staff have gone above and beyond to make sure everyone stays in contact whether by phone, email, text, or zoom meeting thereby embracing our favorite motto “We rise by lifting others. ” 

 Some new interests have also been born out of this necessity. Horse racing, which was introduced by volunteer Andrea, has become a hot topic. “it has been very educational; the horses and how it actually works. It keeps me busy and gives me something to do other than focusing on being alone,” remarks member Carrie P. 

Art has long been a staple of brain rehabilitation, and BIND has always strived to incorporate it into our planning. But what does that look like with video conferencing and limited access to supplies? Personally, that’s been my favorite part. Jasmine (BIND employee) not only gave us drawing prompts and tips, she taught us how to tour museums virtually through Google arts and culture, which opened up a whole new world to us. We also had a lot of fun recreating famous works of art with household objects.  You can check this out on our social media platforms:

https://www.facebook.com/111992482241131/posts/2886619408111744/ and https://www.instagram.com/p/B_Fl62bH5S8/?igshid=lio8v4pp1nd9

David S. States his favorite has been the improvement in the structure of the men’s {support} group, he enjoys the topics that have been discussed and complimented Karl K. for his hard work in this area. 

And just in case you were worried about BIND’S brand new garden provided by Kenlee Landscaping Services and MetroTex Leadership Class #28  – don’t be.  BIND members and volunteers, who are able, have been stopping by, at separate times, to water, weed and tend to our flourishing plants. Thank you to those that have helped. 

Hosting Synapse Laps virtually this year was another first for the BIND staff.  Synapse Laps was very successful and we were able to raise $3,000. The event also encouraged our members, staff and volunteers to get in some good, safe exercise. This was one more example of progress through flexibility. 

Hopefully this quarantine will come to an end soon, and BIND members can once again get used to a new normal. But until that day we will weather this storm together, but apart.

Working After Stroke

By Blog, News, Newsletter, Resources

Recovering from a Stroke and Returning to Work
By: Megan

It took me six-years and seven-months plus twenty-days to return to the workforce after my stroke; I returned to my profession as a software engineer. Shortly after my injury, I had a calendar where I would mark days off until I could go back. I stopped counting the days after a year when I realized that was not going to happen. All I wanted was for my life to be normal again. I never imagined that it would take me that long to return to work.

Strokes can happen at any age. According to the Texas Traumatic Brain Injury Advisory Council Report (2014), 34% of strokes survivors are under the age of 65. I had my stroke at age 29. It resulted in global aphasia. In the beginning, I could not speak nor could I understand anything. My stroke was bad; it was bilateral. 

I was in formal speech therapy for over four years. Speech therapy is not cheap. My insurance paid for sixty sessions each calendar year. I had to pay the rest out-of-pocket which came from my 401k savings. My speech therapist gave me homework assignments to do that resulted in my husband becoming a part-time speech therapist. Year-after-year, I kept improving even though many medical professionals told me that progress ends after six-months. Eventually, due to financial constraints, I had to start looking for financial alternatives to keep progressing. This was when I started looking into going to BIND.

I tried to go back to work a year after my stroke as my job would be held for me. I wanted to get as much rehab as I could before I went back. My employer would not allow me to return; they said that it was not safe. At this point in my life, I was hopeless. I had to rebuild my life from the ground up. I did not want to give up because it is not my nature. My husband and I discussed different possibilities such as moving to a different area or state. I did not know how things would workout but we kept pressing forward.

I have faced tons of negativity in my recovery. It started when I was in the ICU when the doctors told my family that I would never work again. I cannot count the number of people that tried to reduce my confidence over the entire time-period. However, I had a few people in my corner rooting for me, which includes BIND, PCP, and audiologist.  

When you do not return to work after an injury, depression is a major hurdle. Bills do not stop. I still had student loans even though I was not working.  My student loans were discharged due to permanent disability after three years. Losing your job is an emotional blow; I did not feel like I had a life-purpose outside my profession. Many rehab professionals told me to look at other jobs or to take a part-time job. They suggested that I look at the SSDI ticket-to-work program that allows SSDI recipients to work while getting social security. My life situation did not allow for that since I was on LTD (long-term disability) and SSDI. If I went back to work, I would lose all benefits. I was the breadwinner in our marriage, so I had to make smart financial decisions. In my experience, these restrictions keep people from returning to work. 

My first rehab kept telling me to look for volunteer positions, but I was scared because I was worried that I would lose my LTD (long-term disability). On Facebook, I talked to a woman who was on LTD and she always stressed her limitations on the required paperwork to prevent it from being taken away; I utilized this woman’s tactic. Over the course of my recovery, I volunteered at a few libraries, hospital, and horse rescue. My goal was to gain connections so I could return-to-work somewhere. Before taking my current job, my goal was to work at the hospital that I volunteered at in the IT department, so I did not have to move away from my family.

Attending BIND helped me to regain my confidence. Formal speech therapy focuses on the patient’s limitations; they try to fix what is wrong. BIND focuses on strengths. One thing that I have going for me is my strong work ethic. My injury did not change this personality attribute; all of my rehabs recognized it and BIND recognized it too. I became BIND’s communication leader. If given a chance, I always knew that I would shine. I read leadership books to learn how to model behavior and give praise so that I could make members feel productive.  Helping others helped me regain my confidence. 

This sad story has a positive ending. I returned to work a month ago. So far, I’m thriving in my job. My recovery journey has led me to meet all kinds of different people and situations; this includes doctors, therapists, BIND staff/members, and community volunteers.  I returned to work for my first boss in my first job as a software engineer. With all the twists and turns, my life has a sense of normalcy again. 

What’s Your Word?

By Blog, Newsletter

A New Year

By Diane D, BIND Member

A few years ago, I was listening to the radio on New Year’s Day when the announcer mentioned that she didn’t make New Year’s resolutions; she instead chose a word for the year.  She didn’t just pick the word out of a hat, but prayerfully contemplated the word. I really liked this idea and prayerfully chose my word: Others.

As a former Activity Director at a nursing home, I did many things for others.  I wanted to give more this year. I wanted to be more attentive to others’ needs.  This would be the year I gave myself away.

My goal was to improve the quality of life of the 20-30 residents for whom I was responsible.  I gave my time, my energy; everything I could, I gave but I forgot one important person this year.  I forgot to give to myself.

In December, my health started to fail.  I began having tremors of my hands and neck.  On Christmas day, I was admitted into the hospital with seizures, where I spent the next couple of weeks.  The next year began with a brain biopsy. There was no word that year.

I had a mysterious illness with many cognitive and neurological impairments.  From my hospital stay in January until my next hospital stay in May, I continued having seizures and the tremors worsened.  I could no longer perform fine motor tasks with my hands. I began to have moments when I couldn’t move or speak and other moments where my body would move involuntarily. I had aphasia, ataxia, stuttering, overstimulation, hypersensitivity to lights and sounds, and spent more hours asleep than awake. 

In August, I got answers.  I found out that the medications I was taking to treat my symptoms were causing my symptoms because of my DNA and how I metabolize medication.  Over the counter allergy meds caused the initial tremors and the symptoms snowballed when other drugs were added.  

Now, I had to contend with the withdrawal effects of the medications that were poisoning me. The movement issues lessened but the cognitive impairments worsened and the common withdrawal symptoms, including pain throughout my body, insomnia, anxiety, and overall malaise came on strong with each reduction.  When I started to feel somewhat normal, I would taper again and subject myself to the pain and discomfort all over again, and so it cycled for almost two years.  

Each taper pummeled my body and brain, breaking and destroying it’s connections. Towards the end, my memory was severely impacted — my short-term, long-term, and working memory were all impaired.  I would forget what I was doing just moments before, all the time, and I couldn’t hold onto a thought. My memories from the past several years were slipping away.  I had problems with slowed processing, simple math, reading, and spelling. I struggled to plan, organize, follow directions, and focus my attention for any length of time.  I also had lots of confusion, headaches, migraines, and brain fog. It wasn’t until I was finally medication free that my healing could really begin.

Healing was certainly a good word for last year, but the word that my prayers led to was “humble.” My brain injury pressed the pause button on my life and gave me the gift of reflection. Reflecting on my past helped me to see that I needed to be humbled.  

I had far too much pride in my work.  With all the knowledge I acquired during the previous ten years working in the activities field, I had become arrogant. When you are passionate and study something to such depth that it becomes your primary focus in life and when you receive much praise for your work, your pride can swell if you don’t keep yourself grounded on the source of these gifts- God. A quote from The Prayer of Jabez Journal, by Bruce Wilkinson, says, “You could call God’s hand on you the touch of greatness.  You do not become great; He becomes great through you.” I was not great at my job; it was always God.

Becoming humble has come naturally with a brain injury.  Not being able to do the things I used to do is humbling. Making mistakes because of my memory, stumbling over my words, and not understanding conversation is humbling. Getting overstimulated in loud and busy environments is humbling. It is also humbling when people don’t believe or don’t understand my symptoms.  

On my recovery journey, I have run into many types of people. They are described below:

The Deserter:  These are the people who don’t know what to say.  So they don’t. They may have been a friend before, but after the injury are not heard from.  Sadly for them it is a missed opportunity. Maybe they weren’t meant for this part of the journey.  

The Mocker:  They laugh at everything, but often at another’s expense.  I have friends that poked fun, especially when I would repeat myself.  I might not have realized I was repeating myself, but I knew enough to know that they were laughing at me.  Actually, it was funny… sometimes.  I had my usual shtick of sharing my injury with others, only the people I saw frequently already knew my story.  I just forgot they knew. I don’t always remember what I did last week, yesterday, or this morning, but my headaches and cognitive

fatigue are a never ending reminder of my condition.  I want to talk about other things, but I don’t remember our last conversations or your children’s names, and sometimes your name eludes me. I may need you to help direct our discussions.

The Samer:  These are the people that have every ailment that you do.  People often try to make your symptoms seem “normal,” to help you fit in.  Sometimes they might say, “it’s not that bad,” or, “we all have that.” Only instead of making me feel included, I feel dismissed and invalidated.  I have learned that people can only reference your feelings through the filter of their own experiences.  

The Judge:  They question my condition, symptoms, or decisions.  They might challenge why I can’t do something or why I have to leave early.  Some people may not realize that each day and each hour with a brain injury can be different, even in a moment my condition can change if I become too fatigued. Others may not understand that different parts of the brain affect different functions. My friends were able to learn about brain injury through my experience.

Even my family doesn’t always understand.  Just the other day, someone said that I lost my determination.  Dear friends and family, every day with a brain injury takes more determination than you know.  I am determined to do what I can, but I am no longer determined to be who I once was. I’m not giving up. I am letting go.

It is only when my friends and family love and accept me and my condition without judgement that I feel accepted.  Seemingly some fell a bit short, but each have been here for me in many ways. My friends and family took care of me, visited me, brought me shopping or to lunch, and they helped take care of my family when I could not.   

Truth is, I have been guilty of all of those shortcomings at one time or another: not talking to someone when I don’t know what to say, making assumptions about someone’s condition, saying that I understood someone’s experience when I couldn’t possibly, laughing when someone makes a funny mistake, and thinking that a person wasn’t doing all they possibly could to get well.  I am blessed to have such caring friends and family. They did the best they knew. The only people that can really understand a brain injury are the ones that have experienced it. This is one of the elements that makes BIND so great! Everyone here understands. 

According to 1 Peter 5:5, “God opposes the proud but gives grace to the humble.”  I am finding this grace in my life. I am still learning to be humble in 2019 and I still find ways to give myself to others, making sure to also give to myself.  These words continue to have meaning long after the year is through. They’ve become a part of who I am.

My word this year is “simplify.”  Choosing this year’s word was easy.  The wake of Christmas chaos inspired this word.  I was busier this Christmas. I started BIND, I had doctors appointments each week, and I was finally able to attend parties this year.  Last Christmas I felt poorly and didn’t go out much so I had a lot to make up for.  

When my activities increased, so did my cognitive impairments.  I bought someone a gift, then another day bought them a gift. Sometimes it was the very same gift.  I lost hundreds of dollars in gift certificates (I am still missing $120.00), and I forgot about other friends and family all together.  Everything was a mess! By Christmas week, I just had to let it all go. I still have Christmas gifts sitting on my counter that I never had the energy to deliver.  I love Christmas and I love to give, but now it is time to reign things in and make things easier on myself. I can no longer keep pace with the former me.  

Evaluating my schedule has been number one in my simplification process.  Organizing my appointments and limiting them helps with my fatigue. I use UBER, buy most things online, and have my groceries delivered. 

In addition, I am getting rid of excess things.  My days are shorter and I have many projects that have piled on my plate over the last few years.  It is time to walk away from some of them. Planning and organizing are skills that I had once lost, so organizing my life is not only helpful, but it is therapy!

I have also decided to discontinue my volunteer work.  This is a hard decision that I haven’t quite committed to yet.  I had accepted a job as a teacher at a day center when I was doing better but my cognition declined and I was no longer able to supervise anyone, let alone a group of people.  Overstimulation and fatigue make it near impossible for me to visit the center for very long. I stayed on the board of directors with the hope of getting back to teaching, but it has been a year and a half and I am still unable to teach. This decision breaks my heart.  It is a decision based on the acceptance of my condition and it means leaving behind a life that no longer fits.  

As I heal, I am changing.  I will probably never be an activity director or a teacher again, even though I miss it dearly.  That was a different time, a different me. By simplifying this year, I hope to discover new goals, new projects, and a new me.  By year end, I will create space in my life for my next word.

Pre-Eclampsia To Brain Bleed

By Blog, News

Hello! My name is Meghan G. In 2004, at 8 months pregnant with my son, I developed pre-eclampsia. It is pretty scary, and the only cure for it is the delivery of the baby. During my pregnancy, I was very irritable and gained very little weight. I was also nauseated most of the time. I started to complain of not feeling well. I slept more than usual. In March of 2004, my ultrasound indicated that my due date was to be June 13. At that time, the doctor said that the baby was very small–around 4 pounds. I also had swelling in my right hand and complained of pain. I was told that I had heartburn, and was given Pepcid.
On April 26, 2004, I called my mom and told her that I was swollen to the point of crying, and thought that I was in labor. My mom told me to call my doctor and inform her of the situation, involving my back and pain in my right side. I called the doctor’s office, and  I was told that they would call me back.The phone call was returned three days later, on April 29th. They said I was doing too much and that I needed to stay in bed. The doctor’s staff did not tell me to come in and to see the Dr. I, then, woke up on April 30th with a very bad headache, and my right side was hurting. At 8am, I was vomiting in the kitchen sink. My sister asked me if she needed to stay with me but I was unable to answer her. She thought I was mad at her but she went to school any way.
The day continues. My mom began calling the house and called from 2:00 PM until 3:10 PM. No one is answering. My dad and sister came home from school to find me having a seizure on the bed at 3:30PM. My dad immediately called 911 to have them take me to the hospital. I arrived at the hospital at 4PM. I was unresponsive. My mom and my ex husband arrived there at 4:15pm. I am also having respiratory problems and my blood pressure was 145/100.  My doctor arrived at 5PM, and I was transferred into labor and delivery. My doctor tried to do a natural birth, but when she did my blood pressure shot up to 212/130. My baby’s heart rate fell to 60. My mother was asked to leave the room. I was taken into an operating room for an emergency c-section.
My son, Tyler, was born at 5:30pm weighing 3lbs and 8 ounces. I was comatose, and I was taken for a cat scan. The doctors came out and told my mom and husband that I had a massive brain bleed. At 8:00 PM, I was taken to Tyler, Texas by helicopter for immediate surgery. My son was transported to Dallas by ambulance, because they had only one helicopter and I was considered the more critical patient. My son was placed on a ventilator and arrived at 12:30, May 1st. They did not expect me to survive in the hospital at Tyler, Texas.
I was in a coma for a week. However, God knew my two kids needed a mom. My mom hung up scripture verses in my room, along with a picture of my son.  The scripture verses my mom hung in my room were Mathew 18:18-20; Luke 9:11 and Proverbs 15:30. No hospital staff thought I would make it out okay, but I did; and my son did as well. Even our pastor didn’t think I would survive. However, God had other plans for me.
God has shown me that life is very fast. We don’t know when we are going to die. I almost died at age 23. But, he knew that my kids needed me. I became a real Christian whereas before I was not. Even though I forget things, I laugh it all off and say that it was from a brain bleed. I am glad that He let me live and have a relationship with Him and my kids.  

And the people, when they knew it, followed him; and he received them, and spake unto them of the kingdom of God, and healed them that need of healing

Luke 9:11

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