A Day In The Life of A Brain Injury

A Day In The Life of A Brain Injury

By Suzanne Stewart

One day during the Summer of 2002, the sun was shining and my husband and I were walking hand in hand, sipping lemonade at an outdoor Art Fair. We were enjoying the warm air and each other’s company as we walked hand in hand. Afterwards, we’d decided to go into town for dinner because our two teenage daughters were busy with friends for the day.

Suzanne Stewart

We were driving on our way to dinner when suddenly, I heard my husband shout out “OH NO!”  I looked and saw a car coming straight at us.  Instinctively, I pulled my legs up to my chin into the fetal position and screamed. What happened afterwards is a blur, but I do remember hearing a very loud noise upon impact and then the smell of smoke. Next, there was only a dead silence.  I remember wondering if we were dead for about a nano second. Suddenly everything went dark and silent.  That’s all I remember about that day, except short little pictures in my mind of the ambulance ride, hospital & ER.. 

Once I was admitted to the hospital, I do recall being very upset because I could not walk.  No one would come to help me when I tried to call for the nurses.  It was hard to use the “nurse call” button because my rotator cuffs were torn in both shoulders.  Both of my knees had torn Meniscus’ and I had a ruptured Biceps tendon. There were just too many injuries and then the multiple surgeries that followed for many years. I have Degenerative Disc Disease and suffered multiple herniated and bulging discs at C4/5/6 and L4-5/S-1 with Radiculopathy. I had an MRI which showed that I was most likely born with Arnold Chiari Malformation I. It must have been “sleeping” all of those years, the Dr.’s told me. They explained that between the severe whiplash from that MVA & a whiplash that I suffered from a previous car accident; my Chiari had been awakened.  I could not hold my head up at all. The pain was horrible and intense.  My husband says that when they were doing my X-rays back in the ER; I was screaming because it was so painful.  He said that I was crying out so loudly, that people standing in the hallway left; because they could not handle listening to the painful screams. I mostly remember my back and neck hurting so badly that I could think of nothing else.

My husband also told me that he kept trying to tell the Dr.’s that “something was not right” about me. He thought that I was acting very different from my “normal” personality.  He said that when he told them I was acting “not myself”, they sent up a Psych consult. Then they told him that “I couldn’t handle the pain because of the abuse I suffered growing up and in my past marriage”.  He didn’t know what to say although he knew that could not be true because I hadn’t  been “different” just before the accident?  After only 5 days in the hospital, and after their lack of being proactive to help me with my pain and injuries; my husband signed me out against medical advice.  He took me to the Neurologist who had known me for 3 years at that point.

The Neurologist really got the “ball rolling” and had me tested for anything and everything that could have been wrong.  At that point I was in a wheelchair, could not hold my head up and needed a yardstick behind my head/neck with a pillow on it.  My husband rigged up a way to help me have something to rest my head upon. I could not dress myself, go to the bathroom alone or even cut my own food.

We finally found out what was truly wrong. Our questions were answered when I was diagnosed with a TBI or “Traumatic Brain Injury”. I went through 6 months of intense PT, OT and speech therapy. After that, I was in Physical therapy for 8 more years and brain injury rehabilitation for 3 full years. The brain injury rehabilitation was done after I’d done poorly on the Neuro-psych testing. Over the next 3 years, I was in a brain injury rehabilitation program. I was there Mondays through Fridays from 9:00 am until 3:00 pm.  I had to have a driving company take me to and from the rehab center daily because I was unable to drive due to pain and nerve injuries.

I could not comprehend what I was reading and had a hard time finding the right words to use while speaking. I was more than forgetful and couldn’t remember my phone number, social security number or my own address. The tests showed that my short term memory was terribly low.  I went to speech therapy, Physical and occupational therapy and had to re-learn how to drive via Drivers Rehab training. I did pass in the end, but can only drive a few miles for personal errands.  They told me they were afraid that I might get someplace and not be able to find my car in the parking lot.  Also, the nerve injuries in my legs, knees, lower back and neck; make driving terribly difficult and fatiguing.

It was and is very frustrating to go from graduating with honors and having a “photographic memory” to not be able to read a full book any longer. I had read the first 4 “Harry Potter” books and was in the middle of the 5th book, when the accident happened. I still cannot and have not been able to finish the rest of the books in that series. Whenever I’ve tried to read any books since that time; I end up reading, reading again and then re-reading. Every time I put the book down and then try to return to pick up where I had left off; I cannot remember most of what happened before that point.  I’ve tried audio books and it is just the same.  I try to listen and whenever I stop and try to go back to it; I’ve forgotten the whole beginning again. This brain injury has changed my life because I have issues with: double vision, severe dry eye, incomplete blinks, prisms in my glasses and continued worsening lowered vision.  I have a moderate hearing loss and have 2 hearing aids now; when ironically, I was an Interpreter for the Deaf before that car accident.  I worked at a major University hospital, Interpreting for Deaf patients and also at a school for the Deaf with Deaf children.  My life was and is changed forever because someone was distracted and then ran through a red light.  My husband’s life and the lives of my daughters were also changed forever in the blink of an eye. I had been a very involved mother who cooked, cleaned, did laundry and drove a mini van full of teenagers. I still made sure that I went in my wheelchair to every swim meet and dance competition. I didn’t want them to think my love or support for them had changed in any way.

I wanted to mention that I still have bad migraines, usually they are “Chiari” migraines. I have balance issues and my personality changed in that I get very emotional now, when I wasn’t like that before the TBI. I also have a hard time making decisions; along with having the same issues that I’ve had since the MVA. If you have had a closed head injury, a TBI or an MTBI, please contact www.biausa.org  for information.

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 6 comments for this article
  1. Maureen Coulthard at 9:11 am

    I have many of the same symptoms including poor balance. 2 1/2 years after my injury I saw a program about brain injury and a research study that was currently underway in both Canada and the United States. I contacted the research site in Surrey BC and made it through the assessment process to be entered as a participant in this study. It is a double blind study to assess the effectiveness of the PoNS -portable neuromodulation stimulator. It is a five week program and it is such a valuable study and helped me so much. I don’t know if I had the actual device or the placebo but my balance has improved tremendously.

    The study is still accepting participants. It is so worth looking into and if balance is an issue you may qualify and you may benefit from the process

    Go to website
    Braininjurytrial.com

    Trial locations are Surrey BC and Montreal Quebec in Canada and Orlando Florida, Portland Oregon, Richmond Virginia and Washington DC

    There are still openings. Participating in this study was the best thing for me and I am so grateful I saw the Nature of Things program when it featured brain injury research. Good luck. And go to website to see details and contact information. Good luck. I am so anxious for the study to be completed and for the PoNS to be approved for commercial access in Canada and the US. Good luck.

  2. Suzanne at 12:16 pm

    Thank you! Everyone! You’re so kind! Robert you are so right! I think HJ, I grieved via help from the TBI Brain injury rehab center…and still grieve sometimes! I hate that I rely on my phone and “Siri” for all reminders , including where I park etc and what door I went in etc. I’m only allowed to drive about 5-10 minutes but that’s better than being a total prisoner in my own home! I had that totally for almost 4 yrs. and I hated it! Now I can go out for “personal errands” at least. Thank you! For all of the love and compassion shown here.. my husband teases me and says that “he only ever needs one good joke” (bcz I can’t remember !😡) oh well one of us thinks that’s funny ! No , he’s my soulmate and a sweetheart but just doesn’t always get it!

  3. Robert Schubring at 9:29 am

    Thanks, Suzanne, for the sad tale of the Psych consultant in this hospital.

    It is evident that this Psych consultant is utterly clueless about why anyone does anything.

    And it is painfully obvious, that this consultant is accustomed to making up some lies about people’s motives and actions, then repeating those lies from a position of Authority, and having the lies believed as if they were true.

    Before he died, I had the distinct pleasure of interviewing Dr Joel Hochman, the Houston psychiatrist who spent his later years specializing in the care of patients with chronic pain.

    Pain drives people crazy. And nobody “handles” pain. This is why, from ancient times, torture has been used for political purposes. The ruler who inflicts sufficient pain upon people, induces them to surrender to him and give him whatever his greed demands, because it simply hurts too much to be tortured further. Dr Hochman demonstrated the corollary of that principle: That if we teach the patient to speak up about pain, and honor that effort by promptly responding with pain relief, the patient calms down and trusts us, because we showed ourselves to be worthy of that trust.

    Can an X-ray technician be trained to team up with the patient and obtain some necessary diagnostic images?

    Often the ER physician, in seeking to learn whether the patient’s brain is bleeding, avoids administering pain medicines that might mask symptoms of a brain bleed. So is it possible to take X-rays of the head, get those to the doctor, get the patient treated for pain, then get the rest of the X-rays done? And why not do exactly that?

    These painful and abusive practices done to ER patients, happen primarily because the practitioners engaging in them, are obsessed with power and control. They hurt patients because they think it is helpful somehow to hurt them. The abstract theories over which they obsess, seem more important to them, than the lives of the patients who are directly in their presence. They ignore what their eyes see and their ears hear, and think only of the ideas and theories they read in some book…ideas that were mainly wrong ideas and failed theories.

    Dr Benjamin Rush argued passionately, in 1770’s Philadelphia, that Americans should have a Constitutional right to freedom of medical practice. Just as imposing a particular religious theory by force, is harmful, so it is to impose a medical theory by force. The government that can command us to whom to pray, and what to pray for, is dangerous, agreed everyone at that Constitutional Convention, who crafted the First Amendment, in response. But it appears they ignored Dr Rush’s cautions, and we are paying the price for that, today. Asserting that the patient cannot possibly be suffering some sort of traumatic brain injury because the therapist instead believes that some past abuse took place that now makes the patient unable to “handle” pain, is every bit as dangerous, as commanding the patient’s family to repeat a particular prayer, addressed to some particular spirit.

    These people abuse the powers we gave them, because we issue licenses to them that allow them, and nobody else, to treat sick people.

    Thankfully, Suzanne at least had the freedom to leave the hospital against medical advice, and go to her own doctor for competent advice and care.

  4. Carol Reinhardt at 6:57 am

    Dear Suzanne,
    I can’t express the depth of my sympathy, empathy, and horror I feel after reading your story. I also have much admiration for your determination to not only overcome all your physical challenges but also to serve as a public voice for all of us who must live with chronic pain. Please keep up the good work!

  5. HJ at 6:46 am

    Suzanne, thank you for sharing. It was very informative and you did very well helping us see how frustrating and difficult it is. How did you manage to grieve that you “aren’t yourself” any more?

    I think that’s what I struggled with most until I found a treatment that helped me with my fatigue. I was having cognitive problems from the fatigue.

    What was most frustrating is that I could express myself verbally, when I used to be an excellent communicator. I get upset with myself when I have something important to get across and I can’t communicate it well because my brain goes faster than my mouth and what comes out of my mouth is a more abbreviated version. I worry how someone else perceives me and I hate not getting my message across! My vocabulary was in sharp decline as well. I could write well (as you can see), but I was struggling to verbally communicate!

    I’m now on Adderall (after trying Nuvigil) for fatigue that is occurring despite my sleep apnea treatment (CPAP usage). I’m on a low dose and am excited at the changes I’ve already seen but also apprehensive about developing a dependency on the medication. Do I allow them to raise my dosage now… when I might need it raised later? Overall, I’m just very excited to have found something that helps in a very life-changing way.

    I have chronic pain as well, mostly from widespread osteoarthritis but fibromyalgia may be a contributor. I have cervical spondylosis which causes myofascial pain in my neck, shoulders and upper back. The pain wears me down and intensifies the fatigue.

    … but oddly enough, it seems to go both ways. I am MORE tolerant of the pain now that I have less fatigue! This was entirely unexpected. I’m saying that I’m MORE tolerant because I don’t take my pain medication dose nearly as early in the morning as I used to and some (rare) days, I don’t take my pain medication until bedtime when I always need it because getting good sleep helps keep me out of a really awful cycle of being sleep-deprived and then having more pain which causes me to be more tired… etc.

    It’s amazing how these things feed into each other.

    I’ve gone through a grief process and I face improvements with really cautious and guarded excitement. I never know what else may happen that might trigger my grief but for now, I’m mostly back to who I was before… the verbally agile, thoughtful and expressive person that I used to be. I never take anything for granted and I worry how these drugs are changing my brain. I was becoming depressed before the Adderall, because I was fighting the fatigue constantly and was falling back into a cycle where I was working full time and then going to bed early so that I could get up in the morning and do it all again.

    I don’t take ANYTHING for granted anymore, though.

  6. Krista at 6:42 am

    Suzanne, I just wanted to say God Bless and so sorry you went through all of that. But you triumphed thru it all. Prayers for you to continue good health and your plight to inform others of real pain. I was in a near fatal auto accident. Was not expected to live. So hard to explain to doctors what your feeling and that your pain is real. They just dont get it and think everyone that claims to be in pain is drug seeking or its all in our heads! Prayers and thank you for sharing your story