Uncategorized

Paying the toll

I wrote this about a year and a half ago- but it still rings true today.

I know I look fine from the outside, but inside, parts of me have died.

Spots on my brain are dead tissue and will never regenerate, and part of my heart went with my mom when she passed over to Heaven. To have lived INSIDE another person- there can be no more fundamental basis for relationship. And to lose that grounding force in your life much too soon; I can’t help believing that it leaves behind scar tissue on the heart that will never be healed until we are together again.

However, I have the audacity to believe that I should not only be able to survive my grief, but that somehow, I should thrive.

Turn my pain into art, or service, or a product of meaning.

I miss my mom with every fiber of my being, and I miss my old self with every breath that I take. I am mourning two of the most fundamental losses in my lifetime. My brain is damaged and may never be in repair. I have rebuilt a life that constantly needs reassessed and adjusted- for modest gains. I enjoy life in “pockets.” A dinner out here, a family outing there—nothing planned too far ahead, nothing too loud, bright, or fun.

But any pleasurable experiences I have now DO comes with consequences. I must pay my penance for stepping out of the prison that my brain has me in. I pay dearly for allowing my children to laugh and be free inside of my home, if I dare overstimulate my nervous system, it can take hours or even days, sometimes, for my body to stop feeling the effects. I can’t even get a massage without paying the price! I have so many knots and so much tension in my body that a one hour massage results in dizziness and nausea for hours afterwards. It is not an exaggeration- every little thing I do comes with a price I must pay.

You see, I mourn, and I continue to pay I mourn my losses, and I try to adapt my life for the greatest gains. Some days I win, others I am knocked out even before I get into the ring. But I am determined to thrive. I WILL use this pain for good. I will turn it over to the Lord and allow HIM to mold and shape me.

Uncategorized

About Me

Hello! Welcome to Concussion Chronicles. I am glad you are here. I’m Jennifer, and I am a former English teacher, mom to two tween girls, wife to Michael, friend to many. Seven years ago, I had my life turned upside down by a seemingly innocuous motor vehicle accident. I now live with Post Concussion Syndrome, chronic pain, and migraines. This blog is my attempt to bring awareness and understanding to the invisible challenges people with PCS, migraine, and chronic pain face.

Chronic Pain, Uncategorized

Where’s the party?

What’s the one party that no one wants to be invited to?  Yup, that’s right. A pity party. When I share about concussions, my spine injuries, or even migraines, its with the intent to further understanding.  True, I want people to understand what I face on a daily basis, but I don’t want pity. I want empathy and understanding. I want people to know that when I am hesitant to make plans, or have to cancel at the last minute due to not feeling well, well, I want them to know it’s the truth and it’s not something I take lightly.

On the flipside, I also want family and friends to recognize that when I DO show up, when I DO accomplish a mundane task like cooking a full meal, attending a friend’s party, or even washing and folding a basket of laundry, it IS a really BIG deal.  Those tasks can be momentous for me on any given day- and more often than I would like, they are out of reach. Think about that. I know no one WANTS to do laundry, and we certainly bemoan the constant question of “What’s for dinner?” But what if you just couldn’t manage those tasks on a regular basis?  What if you had to face your husband, day after day after a full day of work and school, and admit that dinner wasn’t something you had enough energy left to accomplish. That would frustrate all parties involved.  

The constant challenge for people with chronic illness to complete the mundane tasks of everyday life is not one that too many people recognize unless they have experienced it themselves. Think of how it feels the first week or two after having the flu- how everything is exhausting and takes so.much.extra.energy. Even showering.  That is what it feels like on a regular basis to live with chronic illnesses.

So while I don’t need a parade in my honor when I DO show up at a school event or a party;  I DO want people to recognize how much harder it was for me to accomplish the same tasks that so many take for granted. And ultimately, I want that understanding to motivate others to appreciate their own lives.

teaching, Uncategorized

Those who can, teach

“You should talk to…”  That is a phrase I often hear when someone I know encounters someone else with a concussion.   I feel like I was born to teach. From the first time I stepped in front of a classroom, I unearthed a strength and a voice from deep within that I don’t know if I would have discovered had I not found teaching. I found confidence that I did not know that I had.  Teaching, for me, was as natural as taking a breath. I didn’t ever have to think about it- I just did it.

But then, my classroom was taken away from me after my accident.  The day I realized that I would have to resign my position as a middle school teacher still remains one of the worst of my life–only to be overshadowed by the death of my mother.  I remember lying on the floor, wailing and questioning how unjust it was that I had worked so hard for my career- it was something that I never would have willingly walked away from.  And now, it was all slipping away from me even as I continued to race after it.

So I guess this is an outlet for me to be able to talk with other Brain Injury Survivors. I can use my 7+ years of experiences, both good and bad, to help point others towards therapies and self-care practices that may decrease their recovery time. That way, I can teach, again.

teaching, Uncategorized

Life, Interrupted

The Myth of the Mild Concussion

In February of 2011, I finished my Master’s Degree in Reading education with a 4.0.  I did this while working full time at my dream job, teaching 7th grade English at a prestigious middle school. I was happily married and raising two toddlers. I was very excited, and I had begun to talk with my husband about the possibility of going on to earn a doctorate degree. I was on the trajectory towards even more success. Or so I thought.

Flash forward to May 11, 2011. My youngest had just turned 2 the month before, and I had dropped my girls off at daycare at around 7 in the morning.  I was stopped in traffic on a side street in a tiny suburb of Pittsburgh when I was struck from behind by another minivan. My head was violently shaken back and forth, and I struck my headrest from behind. I immediately felt “fuzzy,” but figured that I was just emotional from the accident.  After the police came and information was exchanged, I continued on with the quarter mile drive I had left to the middle school. I still didn’t feel clear, but the thought of missing work didn’t even cross my mind. As I walked down the hallway, I remember my colleagues looking at me and asking what was wrong and saying I had a funny, confused look on my face.  Because I was now running late, I briefly told them what happened and rushed into my classroom to get ready for my day.

After homeroom, first period entered and I was about to deliver my morning greeting and introduce my lesson. I stood up, as I had for 13 years prior, and I opened my mouth to tell my class “Good morning.”  After I got those words out, I began to stumble for words, and realize that I couldn’t remember what I was about to teach or say next. Fortunately, I had an intern that year, and he recognized that something was wrong, so he took over teaching for me. I had no idea that I would never lead a class again.

I left the classroom and immediately went to the school nurse. She performed some simple eye tests and told me that I needed to go to the hospital ASAP. My eyes weren’t tracking correctly and I seemed off balance. I wanted to drive myself, but she insisted that I get a ride.  My husband was out of town on business, so, I called a friend and who drove me to the closest hospital. I was examined and told that I had a “mild” concussion and that I should get a good night of rest. I was to follow up with my doctor in a few days if my symptoms got worse.   I was never told to stay home from work, and it was never explained to me that all concussions are classified as “mild” if the patient doesn’t lose consciousness– two very important pieces of information.

I followed the doctor’s orders, and I had friends help me with my kids that evening until my husband was back in town.  I took Advil for my headache and went to bed early. Being the dedicated professional that I was, I returned to school the next day.  I figured that because I wasn’t in debilitating pain, there was no reason for me to stay home. I had a headache and a sore neck, but again, I was unable to teach and my intern took over. I spoke with my principal that day, and got permission to take precautions such as keeping the lights low in the classroom, and taking “time outs” in the nurse’s office as I needed to throughout the day.  As my intern had been with me all year, I knew my kids were in good hands, but didn’t want to shirk my professional duties; so I tried to keep up as best as I could. It was clear that I was struggling, but I didn’t realize at the time how much further damage I was causing to myself.

I can vividly remember sitting in an after-school meeting that week and feeling that I just. Couldn’t. Keep. Up.   It was almost like the words being spoken around me were whizzing by my head, and I just couldn’t reach out and grab them.  My headaches were growing more and more intense, but I really didn’t want to miss school, as my husband and I were about to start trying for our third child, and I wanted to hold on to as many sick days as I could.  

By the end of the month, my headaches had turned to full-blown migraines, and I began to lose control over my emotions really easily.  I was snapping at my little girls when I couldn’t keep up with their innocent demands for their sippy cups to be refilled, or for a book to be read to them. I cried at the drop of a hat, and I was always exhausted. I knew something had to give.

I contacted the UPMC concussion clinic, but the first appointment they could get for me was a month away. So, I continued on with work as best as I could, and once summer vacation came, my girls came home from daycare.  We were supposed to be starting our summer of fun. However, it was very clear that I wasn’t able to care for them and my migraines just continued to worsen. I would wobble when I stood from a sitting position, and when I would leave to drive somewhere, I would get confused and take wrong routes—even ones I had driven hundreds of times before.

Once I got to the concussion clinic and was given my very first concussion checklist, I burst into tears.  I was displaying almost every symptom on the list. My husband held my hand and reassured me that we were in the right place now, and that they would get me all fixed up.   I took my first IMPACT test that week. My scores for the various components fell within the 2nd and 18th percentile, and my symptoms were considered “severe.”  The doctor told me that I had no choice but to put my kids back into daycare and to spend my days resting as much as I could.  This was 6 weeks after my accident occurred, and it was the very FIRST TIME that a doctor told me that I HAD to rest in order for my brain to heal.  I was devastated, as were my kids. They wanted to be with me, and I with them, but that wasn’t meant to be.

I spent the summer resting- but my migraines were continuous and getting worse. Everything about me felt out of control.  I had food cravings that I couldn’t resist, my emotions were a wreck, and I felt desperate for more help. I was referred to Physical Medicine and Rehab to follow up with the head of the department. However, I couldn’t get an appointment until mid-August. I remember calling the clinic in tears, at least twice a week, to see if there were any openings to get me in sooner. I HAD to get better as the start of school was looming very near, and I needed to be “fixed. “

The first time I met with my doctor, she assessed my entire situation and began to make a plan. Her first order of business was to find medicine to treat my migraines (it would take us 9 more months before we could even lessen the pain), and she referred me to the best vestibular therapist in town.  Unfortunately, she also gave me the heartbreaking news that I would be unable to return to work- that even with the precautions that I had taken the spring before, just being in the building with the chaos of the classroom and halls, the lights, and all of the movement was not good for my head. I was crushed. I remember agreeing to take SOME time off, but I asked her only to sign me off for one marking period, to give me a shot of returning to school in the fall.

I met with the vestibular therapist following week, and I began what would be a year and a half of therapy to regain my balance and lessen the cognitive blowback from visual stimuli that I was having.  I was also referred to a neuro-opthamologist, for assessment and began my approx. 6 months of vision therapy. My therapeutic regime was grueling. My mother, my mother in law, and my husband would take turns each week driving me to these therapies and numerous doctor appointments. Each appointment would totally exhaust my brain, and I would spend the hours when I returned home so mentally exhausted that I couldn’t form a logical sentence. The best way I can describe this level of mental exhaustion was that I couldn’t even make simple decisions as to what topping I would like on my pizza for dinner that night. I followed EVERY DOCTOR’S ORDER to a “T.”  I desperately wanted my old life back.

By the end of December, I became “cleared” on the Impact test.  However, as the doctor explained- this really didn’t mean much for a woman of high intelligence who was suffering such a multitude of ongoing symptoms.  The test just meant that I returned to the “average” range of intelligence, in a controlled, quiet environment.  The Impact test does not mimic real-life, which is anything but controllable.

After a year of continued therapies, I was forced to retire from a profession that I loved and am unable to work full time. Most days, I can’t even parent, solo, all day. I never know day to day what my threshold of activity will be before my brain fatigues on me, or if I will wake with a debilitating migraine or vertigo.   I have tried every therapy put in front of me, and I have completed each task with the same gusto and dedication that I had put into my teaching and parenting. Nothing has allowed me to return to my former self.

I still see my doctors every 4-6 weeks. I suffer from several migraines and episodes of debilitating cognitive fatigue each week.  Preventative migraine medicines only work minimally for me. While this is very discouraging, I try to look at how far I have come, and not spend as many hours looking at how far I have yet to go.  It helps to look at things this way when your life has been hi-jacked by something you can’t control.

Invisible, chronic health conditions are extremely difficult to live with.  I know that I don’t “look” sick- if I had a quarter for every time I have heard that.  But I am sick. And my life deserves to be understood, too. I need people to know that I am not being lazy when all I can do is to sit in the shade and watch my kids play outside.  I need them to understand that when I ask for a quiet table at a restaurant: I’m not just being a difficult customer. It is because I can’t follow a conversation if there is too much noise around me.  I need people to know that when I lose my train of thought mid-sentence (aphasia), or get frustrated when I can’t help my second grade daughter spell words aloud, it’s not within my control. I need people to understand that I make up and the smile on my face are nothing but a mask I wear outside of my house because I still suffer, daily, from one, mild concussion.

There are thousands of people like me, who suffer from Post Concussive Syndrome who feel helpless when they see others recover quickly from something they have so valiantly battled. I still desperately want my life back, but have been forced to redefine what life is for me. I take the good days with the bad, and realize that looking forward is healthier than looking back.  I will continue to hope for new medical breakthroughs that can advance my healing, and I will pursue any new avenues with the same amount of dedication as I always have. But for now, I can only hope that my story can help save someone else from the myth of the mild concussion.