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Aphasia Presentation with Kitti Tong and Tamara Rogers

September 30 @ 1:30 am 2:00 pm

Clients & Caregivers

Kitti Tong, BIS client and brain injury survivor, will share her journey with aphasia. Kitti will discuss her experience, recovery, and her strategies. She will also share tips for communicating with others with aphasia. There will be a Q&A for Kitti and Tamara towards the end of the presentation.

Groups hosted by Brain Injury Services will meet via Zoom. To receive your secure Zoom invitation, you must RSVP to the group coordinator below and sign our Telehealth Agreement.

(703) 451-8881 x306

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They Say Patience is a Virtue… I’m Still Learning How to be Virtuous

My name is Jan DeLucien. My brain injury was a trauma, for others it’s medical. Mine was 3 and a ½ years ago. 

In the beginning….. before my “new life” began … I lived my bliss, I was a system analyst (techie) for over 30 years. Loved my job and used my brain A LOT…  even my hobbies. All that defined me – I WAS a software tester and genealogist for 30 years, and a singer songwriter since I was 11. 

What happened? I had just come back from the grocery store and was thinking of 3 other things. I pulled the first load of groceries together in the back seat of the car, backed out of the car fast and stood straight up into the sharp corner of the car door.

In a single moment, the person I thought I was no longer existed, and I didn’t even know it yet. 

I was badly stunned, but no stars, loss of consciousness, didn’t even break the skin! But, I was nauseous, and my right eye was very bright and blurry. So off to the ER. My CT was perfectly normal – no fractures, internal bleeding or swelling. I was diagnosed with a minor head injury. The biggest concern was the blurriness and brightness which wasn’t going away.  

I got the usual “Rest your head – no TV, phones, or computers for 48 hours. The eye should be better in about 24, but if not, see an eye doctor.” It wasn’t, so I did. He said the eye and nerves were fine, that it was a concussion and to go back to the ER and get the diagnosis. That it might take a while to get better. The next day, the ER did another CT scan – “Normal”, again, but he agreed I had a concussion.. “Give it another week or two of taking it easy. If it doesn’t get better, see a neurologist.” 

My online research said take it easy, go slow, don’t overdo…But, life has a way of interrupting all attempts to pace yourself, you know. After 5 months… I got it – I needed professional help. Whenever I overdid, it would set me back to symptom level at Day 1. 

So,  off to a neurologist. Then, things really got interesting. The official phrase is “different professional opinions”… The neurologist said my symptoms were a result of stress and anxiety with a dash of depression. In spite of his “opinion”, I demanded an order for rehab and an MRI (also normal). My therapist taught me to build up gradually.. To NOT push the envelope too much. Then, I ran out of insurance. I still worked on my exercises and hoped that I could continue to improve using what I knew. Things were getting better, but not by much. 

I was scared… and afraid I wouldn’t be able to start rehab before my brain was locked in where it was. It took a year, but I finally got Medicaid … so off to a new neurologist. His “opinion” was a mild TBI, and he warned me it could take YEARS to get SOME things better, but “let’s see what we can do now”. He sent me to Loudoun’s Concussion Rehab Clinic. I ended up with 3 therapists once a week. 

That’s where I learned more about managing the symptoms…

I had to change my “THOU SHALT STOP” limit from a 5 out of 10 to a 1 for doing day-to-day activities… and then rest until I was back down to 0 for pain. IF I was doing rehab, I could go up to a 3, but then had to reset to 0. Once my brain got desensitized from all the previous pushing I did, I had more brain space each day and things really started improving!  Of course, the exercises they gave me might have helped, too.  😉

It showed me that our brains are like a sprained ankle. It’s about inflammation. Pushing too much, too often, slows and can physically damage our progress! If you keep using your ankle as if it’s normal, instead of using a wrap or crutches, you end up having to repair tendons…. Well, we can’t just repair our brain… We have to ease up on the brain and let it work at it’s own speed. Push the envelope gently, but don’t tear it. I got faster and even further that way…. 

What if I CAN’T stop when I hit my limit?  

As soon as I can, I do and rest as long as I need to. I’ll do no-brainers or close my eyes.  But there is always a “benefit”…  I learn something. What to avoid, how to prevent, or even find a workaround. 

One thing I have to do is PLAN FOR HEAVY BRAIN DAYS… I don’t schedule too much the day before and I plan a recovery day afterwards. But, whatever I do…. I do NOT tell anyone! If they want me to do something? “Sorry… I have an appointment” – Cause I do — with myself!

And, I keep monitoring my limits… If I’m having lots of headaches and symptoms and ending up with too many “crash” days…  I adjusted my limits downward. When my insurance ended, I was able to keep going – improving by following that simple tactic. Because that’s what recovery is… Working to conquer the impact of the injury. We can’t necessarily heal ourselves, though neuroplasticity can do that by forging new pathways, but we can reduce the impact by pushing the envelope and coming up with workarounds. Going from not being able to move a finger to moving the finger means that pages in a book can be turned, silverware can be balanced, changing the angle of something to bring it closer to you.  Your quality of life just changed some.

So…  What challenges am I (yes still) working with? 

My brain issues were across the board, but, without any short-term or significant long-term memory loss. Most daily activities were technically doable… unless I run out of brain space. At least until I hit my head again when I lost more balance and had more trouble with fine motor skills. 

One of the most painful issues was (and still is) audio input. My brain can’t filter out words by context, at least not in real-time. People don’t understand that “just ignore them” requires your brain to hear the word to figure out if it’s important, too far away, etc. Talk about stack overflow!!!  It used to be that 5 minutes in waiting rooms, social activities, church had me in a lot of pain. Now I can do an hour or so, if only one or two people are talking int the background at a time… And I also keep very soft new age music in my isolation headphones in public. The more the brain is doing, the more it has to analyze, the more I hurt, and the less I can process things. 

Same with music.  I always used to sing with or listen to songs with words. It was a HUGE part of me…. Yep! … Words!  :-/  Now, I can listen to those for about half an hour, but only about 1 or 2 unfamiliar songs in a row, and there’s still a lot I can’t listen to… It took about 2-1/2 years after my initial injury just to get there. And, I kept reminding myself that even 5 minutes is better than no minutes.  😊 

Speaking is a lot better. At first it was really slow and difficult to talk (sounded like stuttering) trying to retrieve information. I couldn’t construct sentences or find the exact words or information quickly, and sometimes not at all. So, I prepare more for business calls, but, too many questions about facts I didn’t prepare for, and I end up where I can see the concepts but not the words to describe it… I can write – takes a while, but speaking?? not so great. You’ll see in the Q&A.  I can speak pretty well, as long as I practice it 1…2…30 times. 😊

I created THIS little laminated card I keep with my license. One side asks them to be patient and what I have problems with. The other side – what we can do to help them and me.  It really helps dealing with things in person. For the phone, I developed some basic cheats to prevent (or get me out of) trouble. Most important? 

  • “Just a second, I have to get rid of that phone call…” Then I put them on mute and take as long as I need to reset my brain, or organize my thoughts. 

So, I keep a mini pad and pen handy at all times, and remind others (and myself) to slow down… And, if it’s an important call, I’ll have my caseworker, an aide, or a friend on the phone to take notes and keep me on track. I can’t afford to miss something or explain things incorrectly.  Letters or email is better. 

The most personal damage to me was cognitive. I can “work around” the rest, but this was part of the “who I was” impact. I can’t work because the analysis piece went south and isn’t really coming back…. I can work around it some and I have a little bit of the skill that allows me to understand where the challenges are coming from… Sometimes it might take several weeks before I figure it out though, and then I can try to turn that into a work around. Being in public and answering business questions? That’s not changing much at all… Yet…  The other piece is that prioritizing and making decisions with more than two options gets my brain going in a circle trying to sort out dependencies and cause and effect and… 

Thanks to attempting a yoga class, I finally realized that I could do 3 things simultaneously, but the 4th will throw things out the window randomly. Or sometimes will freeze everything with a “brain matter grey” screen of death… 😉

I learned that lots of “it’s easy” things are multi-threaded. For example, making a PB&J sandwich uses exactly 3 threads at the same time. If something falls off the bread, or an outside thought? Yep – either balancing or “where was I” goes out the window. 

You see (1) You are balancing at the counter, (2) using spatial skills to color in the lines, (3) while continually checking to make sure the jelly is even. My workaround? I lean against the counter – no balancing. I can handle things the exceptions. Cutting celery and carrots? An option now, but, I have to be symptom free before I start that. Cooking from scratch still trying to figure out… You can’t lean against the stove, and lots of quick unexpected decisions. Luckily, I get Meals On Wheels. God bless microwaves!

Driving’s the same. I’ve set my limits to familiar places and straight highways with minimal stop lights/intersections. NO rush hour or nights. If I have to go somewhere distant, I add an extra 15 – 30 minutes so that when (not if) my head starts hurting, I can pull over and settle my head before continuing. At least I’m not late or tense when I got there anymore! At this point, I play it safe and use Metro Access or ride sharing so I don’t miss something another driver does.

When I hit my head again about a year later, spatial judgement got worse. Now, even with a cane, I can fall over if there are too many people moving around me, or just uneven sidewalks. So I use my rollator. I like it better, actually… I can look up while I’m walking instead of where I’m putting the cane. Gives me an “up” feeling.  😉

And, I *LOVE* neuroplasticity… I find ways to “kind of” do things I like… I can index records online (slowly) though I can’t figure out family connections.  I kept picking up my guitar once a week as an exercise for my fingers. Just forming chords… It took a couple years, but I can actually play my guitar now… simple chords to familiar songs. And I’ve started exercising my vocal chords again. The other day, I reopened one of my registers so I can sing higher!  I just can’t use a book for words/chords and play the guitar, and sometimes singing and guitar don’t work…. Yet…. 😉  

The key for me, was to go into it knowing it won’t work. Just testing the waters… Doing an exercise… That way it felt more like moving towards, not failing to do. You don’t go into physical therapy thinking you can move your shoulder all the way up on the first visit. 

My advice to others — NEVER stop exercising the things you can’t do… until you hit your stop limit!  Stretch… don’t tear. 

Before I run out of time… 

It IS sad and depressing not being able to do things that were easy.  My generation is defined by our life experiences. You spend 15 or more years becoming someone.. To redefine that? It’s a hard choice, even for normal brains… But, when your brain and body don’t communicate the same way at even basic levels?? There are a lot of automated expectations and habits to undo. It’s terrifying…

For me, about a year into my journey (before rehab), I realized I didn’t even meet my living will criteria to not pull the plug. I couldn’t create, reason, or communicate, not even socially. My life was boring (re-runs and easy books), working on exercises, and not being around people. My 60th birthday party was painful with just my son and his teenage kids over for 45 minutes. 

I struggled with suicide for 6 months, back in 2018. If it weren’t for the fact that my Dad lived with me and needed my care, I wouldn’t still be here. I have struggled with depression all my life. And I knew what I needed to do. I wanted to fix it, but I couldn’t use the tools in my tool box… Listening and singing to upbeat Christian music… driving in the country… 

No matter how bad I wanted to… I was too broken. I couldn’t stop circling the drain. 

Therapy and meds helped, but I spent a lot of time praying for God to let me come home… Eventually I saw it… He gave me an incredible voice and a deep love of music. He would never leave me without being able to at least listen to music with words, however long that might take. THAT I could live with. And I have… Even one minute longer is better than none.

There are still days when it’s rough. It is exhausting to keep positive for everyone else, when I was the one who lost who I was. When outward signs improved, people couldn’t understand that a loss was still there. They can’t see / feel how hard my brain is working just to do that. 

We all need to remember that It’s normal to be sad or depressed for a day, even two… To know that we’re not letting people down (or ourselves) if we aren’t upbeat. 

Well-meaning people keep telling us “don’t dwell on the past”… “look what you can do now”.  While that’s true, the message is that we’re not allowed to grieve. If we lose someone we love, it’s OK to grieve… There are groups for that. But, the person we lost isn’t real enough to grieve for… I can tell you that as long as I let myself grieve when I encounter a painful memory or block it’s less devastating that it was before. The pain gets better, less frequent. And, now I can use those memories to find ways around them, or alternatives that are close to what I did so I can feel like I’m making a contribution… Which is the key to getting through all this…. And, is why I’m here. 

Not everyone feels it as a loss, either, which is OK. It’s great that they have redefined themselves! We will, too… But until then? It’s OK to miss the old person… 

That said… I change out sticky notes and phone wallpapers to remind me that while I may not know what my future is going to look like exactly… it will be better than it is now, no matter how little the change… even just a finger…. 

Trusting that made a difference for me. The baby steps.

Oh… And, learning to ask for help!!! Me???  Getting to groups also made me realize that I’m not alone. No matter how mild my TBI is, I deserve to be there and be counted as a survivor… And, I always pick up a little piece that helps me later.

Hardest thing for me?  I need to remember that it will happen in my brain’s time, not when *I* want it to. 

They say patience is a virtue… I’m still learning how to be virtuous, 😉 but maybe some day…. 

With enough time.  😉 

And being here, is part of that learning.