Aphasia Threads: James, Rowan, and Vicki

Welcome to the Aphasia Threads Project, which usually weaves together three points-of-view: people with aphasia, caregivers, and the professionals who help each family navigate aphasia. Each week, we bring together three unrelated stories, one from each member of this triad, to learn from their experience. Yet this week, all three stories come from people with aphasia.

This week, we’ll hear from James, Rowan, and Vicki, three people with aphasia.

Person with Aphasia

It was 2014, and I had a stroke that paralyzed one of my vocal cords and caused aphasia, memory loss, and word-finding issues. Despite those setbacks, I am now into the second year of my EdD program (Doctor in Education).

Aphasia Changes Your Life

My wife has been very supportive of me.

But There Are Things That Help

Grammarly, spell check, and others.

And Things You Learn Along the Way

Find yourself first, and then find your memories. The change has happened, now fight to communicate with as many people as possible.

What Caregivers and Professionals Can Learn From Me

Aphasia is frustrating on both sides. Don’t let it be. Tell them or write them what you are having difficulty in. You survived – Now, go live!

Person with Aphasia

I had gastric bypass at 20. Shortly after, I became ill and couldn’t eat. I wasn’t given any vitamins or other help, so my body started shutting down. After starting my recovery, I noticed I wasn’t able to speak well and had a hard time understanding others.

Aphasia Changes Your Life

I had to drop out of college. I can’t work. I haven’t tried to make any new relationships yet, but I have a hard time maintaining my sole friendship.

But There Are Things That Help

I’ve done a lot of reading and writing in my life, so trying to get back to that has been a good challenge. I recently joined an online (Discord) writing group so I can edit for others and have them do the same for me. We also just text a lot, which helps me to feel less lonely and frustrated at my lack of communication skills.

And Things You Learn Along the Way

Look for every possible hobby. If you can’t read well, try just working with your hands. If you can’t handle that, try watching things or listening to audiobooks. Keep your brain engaged as much as you can and never give up.

What Caregivers and Professionals Can Learn From Me

As many people know, it’s hard in America to always get the healthcare you need. My insurance refused to pay for an SLP. I’m sure there are others like me out there who may be wondering what can they do if something so basic was denied to them. I think in that case, it’s important for others to make resources available. Having reduced cost or free online programs, having pages for people to print out and work on, and having tips such as, “try reading aloud or singing to help pacing” can be a huge help.

Keep trying, there are others like you out there, and I hope you don’t feel alone anymore.

Person with Aphasia

In 2010, I was in an auto accident and received a brain injury. Within four days, I lost bits of memory, stuttered, couldn’t remember objects, amongst a host of other problems. It took years to get back to somewhat of normalcy.

I didn’t receive medical help – no one offered therapy of any kind, and my husband and I didn’t know to ask. But what we did have was persistence and the fight to keep going.

I took writing classes to learn to read and write again, and I walked around the house speaking names of objects aloud (whether or not I got them right, I will never know). I still have bits of aphasia and forget names of objects or people, but I am finding that other people forget, too, and I have learned not to worry so much. Not worrying helps with less stress, which helps my memory. Aphasia is different for everyone, but what I think is the same is how much we choose to fight. Even if we can never get it all back, at least we can say we never gave up.

Aphasia Changes Your Life

My family has been amazing and treats me the same. If I forget something, I say, “I had a brain injury.” They jokingly reply, “You can’t use that one anymore.” But as easy as it has been with family, I have no friends left – some couldn’t handle it, and I have a difficult time making and maintaining relationships. If people find out I’ve had a brain injury, they treat me differently, which is hard. I want others to know, because I have a story to tell, and I want to help other people. And yet… yet I hate this feeling of being treated like I’m stupid.

But There Are Things That Help

My tool is faith and knowing I can do this.

And Things You Learn Along the Way

Never, ever give up. Fight. Doctors may say you can never get better (that’s what I was told at my six-month mark), but don’t believe them. Believe in yourself. Surround yourself with people who also believe in you.

What Caregivers and Professionals Can Learn From Me

They need to know that people with aphasia may have difficulty remembering, may mix up words, or forget names of items, but they are still the same person. The brain still works, it’s just that the wires are temporarily crossed. Never give up on someone. Help them, but don’t do it all. Treat them the same.

My family treated me the same. My son still asked me to babysit their kids (even though I was a total wreck), my husband still sat with me on Friday nights to watch a movie (even though I often freaked out because I didn’t understand, and it would take almost a year before I could make it through a whole movie), and family still called and talked to me, just to see how I was. I could see the concern in my husband’s and son’s eyes, but it was as if they knew I was still the same person inside. They believed in me. They believed I would get better.

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