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  • Writer's pictureSurvivor or Caregiver

TBI One Love Survivor Barbara Castlow

Hello, my name is Barbara Castlow. On October 21, 2017, I'll celebrate my 40th TBI birthday.  It's difficult to believe that so much time has passed. The pain and frustration and loneliness feel as though it all occurred yesterday, but I know that step by step and with God's help my progress has been miraculous.  Especially difficult to believe is that I have gained so much despite the loss.

In 1977, my goal was to begin graduate school in Boston MA for a degree in Women's Counseling.  Shortly after the school term began, I went out with a girlfriend to see a movie.  It was the weekend (I think) so there was no reason to cut the evening short.  My next memory is waking up in a

hospital bed and not knowing why I was there.  According to the newspaper report, the car smashed through a guard rail on the expressway.  It tumbled 150 feet to the ground.  My girlfriend was thrown out of the car and died upon impact with the pavements.  The rescue squad had to cut me from the car.

The prognosis for me during the next months was unknown.  How long would I remain comatose?  What would I be like when I woke up, if I woke up?  These questions pestered the doctors and nurses as well as my parents and friends.  All kept a silent watch, waiting for something to happen.  My parents and friends visited as often as their circumstances permitted.  They lived in the Chicagoland 


After three months, I slowly regained consciousness.  When I opened my eyes, I didn't know where I was or how I got there.  Doctors and nurses came around regularly to chart my vital signs.  My parents and friends visited.  They talked to me; my mind answered but I could not get words out of my mouth.  My condition had stabilized so I was transferred from an acute care unit to a rehab hospital. It was there where I was taught to breathe (I had a trach for six months), eat (a gastrostomy tube was put in because I could not swallow), and walk.  Double vision joined my list of problems.  

The rehab therapists--physical, occupational, and speech had much to correct.  At that time, a lady named Marilyn Price-Spivack experienced similar problems when her daughter, Debbie, had been injured in a car accident.  That's when the National Head Injury Foundation was born and Marilyn became its President.  I don't mean to digress.  To me, that was going back to my beginnings with brain injury.

Daily therapy was so hard and frustrating.  I could not do the things I once accepted as natural abilities.  I had to relearn how to breathe.  That took a while, so the tracheotomy tube had to stay in until my lungs got stronger. Regaining my sense of balance was a long and slow process.  It is still impaired, though, especially when I'm tired.  Before learning to walk, I had to learn how to crawl.  My problem was wanting to move my right hand with my right knee.  It couldn't understand the alternating right/left idea.  The third hurdle to get over was relearning how to eat.  Solid foods were not allowed until I could be sure my breathing coordinated with chewing and swallowing.  In my mind, this was taking too long.  I wanted to eat!  It was March or April and I'd had no solid food since October.  

I just knew I could swallow; the doctors had doubts.

Soon enough, my wish for food came true.  It was Easter weekend and a previous roommate from that hospital came to visit me.  She had no idea I was not allowed food and brought me a big basket filled with Easter candies.  The nurses saw my eyes light up when given the basket.  As soon as my visitor left, that basket went on the top shelf of my closet. Eager to get at it, I thought I'd lay down for a nap, and get the nurse out of the room.  I waited a little while, then slowly and carefully climbed over the side rails of the bed.  Getting into my chair, I wheeled over to the door and closed it halfway.

Then I went to the closet.  Locking the brakes on the chair, I used it to steady my snatch 'n grab of that Easter basket.  Success!  Wheeling back to bed, I climbed back in, with candy, and started eating a chocolate bunny.  Apparently, I'd managed to eat a few because when a nurse came in to check me temperature and blood pressure, she started laughing.  My face was streaked with chocolate and marshmallow.  Soon, several other nurses came in to see what was going on.  My doctor came by; he was not happy, saying I could have choked.  Since I was not able to talk because of the trach tube, that doctor had created a letter board for me so I could communicate.  Pointing out letter by letter, "I knew I could eat!"  So, after that, he started me with ice chips, then jello until he was absolutely  sure, that my swallow reflexes were all right.  {By the way, the stunt with the wheelchair was very risky.  Do not try it.}

The next year or two of rehab was simple: a lot of hard work.  Gradually, I got stronger and was discharged to outpatient therapy while I could live at my parent's house.  They had quite a job cut out for them: finding appropriate rehab for me (there was nothing yet for brain injury, onlystroke) and putting up with my temperament.  Becoming acquainted with the new me was not an enjoyable thing.  The most difficult part was putting my memories of what I used to be able to doto one side so I could find and welcome my new abilities and person.

The accident happened about six weeks after my twenty-second birthday.  A major concern was my future.  What was I supposed to do for a career?  Manual skills were definitely not my strong point; physical abilities were probably on the same level.  I possessed no skills to offer to a job market.   What remained was my memory of what I had learned in school--undergraduate training in psychology.  I could combine that with my personal experience of brain injury and rehab.  Maybe I could become a Rehab Counselor.

So, I searched the graduate school catalogs for places that offered such a curriculum.

I found one close to home where I could complete my basic requirements, and another in Dayton,Ohio where I could get a Master of Rehabilitation Counseling Degree.   It felt like my life was startingover:  I had been given another chance to do something, to make a difference.

That was the easy part.  Next, came my struggles with note-taking and test anxiety.  Those were new problems to me.  The old me used to be able to scribble pages of notes and finish tests before "time up" was called.  Now, I had to ask people take notes for me.  The majority of my exams were essay tests.  That helped.

In August 1985, I finally earned my Master of Rehabilitation Counseling Degree with a 3.85/4.0 GPA.

Now that I had the skills to work, I needed to get a job.  Finding it was a job, but I got a

position as a Vocational Rehab Counselor with the State of Florida.  "No need to worry," I told myself, "I'll see what I can learn here, then find work helping people with brain injuries." 

Over time, I gained a knowledge of different agencies and who they helped.  With that knowledge, I had a network of individuals who would be able to help me, at least in the case of information and referrals.  A big help was the presence of a Community Reentry Center for people with brain injuries.They were kind enough to allow me to hold monthly support group meetings there.  The first was on Valentine's Day, 1989.  The group started well.  It was a good place to socialize as well as tradehelpful information with others.  

In the Community Announcements section of the local newspaper, monthly meetings were announced.One fellow called to ask about the group.  Though the meeting date was two weeks away, he waseager to meet others with brain injuries and would call me every day to talk.  Eventually, we metfor lunch.  After that, we saw each other daily.  His name was Jeff and we married several years later.  It was a good balance:  he could do things I was unable to do and I did what he struggled with.Unfortunately, his body just couldn't take any more and he passed away April 4, 2016.  It feels likeI died, too, but that's Grief trying to take control.  I must keep moving forward. 

After several years, the Community Reentry Center closed and our support group had to meet in a conference room of a local hospital.  In that setting, we could have speakers on various subjects that affected our everyday lives.  The group included people with brain injuries, their families and friends.  Because growth is an unpredictable thing, the number of members fluctuated.  But the good thing is that two other support groups broke away to have meetings closer to their homes.

As I continue to survive and thrive and help others experience that in their own lives, I keep moving on!

Thank you, for letting me join this helpful Family!

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