Aphasia Threads: Phil, Angeles, and Sonji

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 Phil, Angeles, and Sonji, three people with aphasia.

Person with Aphasia

I had a stroke on October 18, 2013. I noticed I was not feeling well, was drowsy, and did not have sensitivity on my right-hand side. I went to the hospital and I was there for 2 or 3 days. They said I had a stroke. I knew I had problems with speech and language, but it wasn’t until over a year later that I was officially diagnosed with aphasia.

Aphasia Changes Your Life

People understand me, but I am more reluctant to speak than I was before the stroke. When I speak on the phone, it is sometimes hard for people to understand me.

But There Are Things That Help

I am now in an aphasia group every week, and I like the social aspect, the chance to speak to others, and the knowledge attained from the other people.

And Things You Learn Along the Way

Get as much therapy as you can and then get into an aphasia group.

What Caregivers and Professionals Can Learn From Me

If you run an aphasia group, make sure everyone gets a chance to speak and get them talking a little bit and try to go in-depth if possible.

Person with Aphasia

I was hit by a taxi on my bicycle while not wearing a helmet over 25 years ago.

Aphasia Changes Your Life

It’s getting better. I’ve since learned many coping strategies, healing tools, skills (like nutrition) and medicines to improve brain functioning but challenges still arise. My aphasia especially gets activated under duress and stress. Unable to find the words, either I’m shouting or swearing profusely–– totally inappropriate––or I can barely speak at all.

It’s like being put on mute and you can’t find the remote. It has hurt all of my relationships because my aphasia / TBI was not properly treated or even recognized by the medical community. It took me over 20 years to finally get the help I need and it’s from forums and online discussions like this. Thank you.

But There Are Things That Help

Facebook – I’ve found so many helpful TBI sites like this one. Truly a great resource. So grateful.

And Things You Learn Along the Way

Love your new self and grieve your losses. Expect frustration, disappointment failure and despair as guests. Welcome and be patient, forgiving and curious with all of your feelings – they have something to teach you. Film your progress. Remember, life is good. You survived for a reason. Embrace your purpose, even if it is just to heal what’s broken. Let yourself be transformed. Share your story. You will inspire others. Never give up.

What Caregivers and Professionals Can Learn From Me

Sometimes you have to fill in our blanks to find the words or the information or whatever needs we are not addressing because we literally can’t speak for ourselves. This is very difficult to do. We are not being lazy or difficult. My aphasia comes full-force being under duress or when I’m over-tired from brain fatigue. This is NOT the time to be asking me questions or expecting your needs to be met first.

Especially you admin bureaucracy people; filling out your forms is pure cruelty sometimes. Don’t insist and don’t be controlling. Please suggest, give us choices – help us fill in the missing blanks – if you can. You can’t ask or expect us to do what we physically cannot do.

Please use radical empathy by putting yourself in our shoes and be our advocate for whatever it is we need but can’t express. Don’t assume we know. Remember aphasia is an INVISIBLE DISABILITY. Help us be SEEN and HEARD.

Yes, aphasia makes us vulnerable to exploitation manipulation and abuse. Please don’t blame the victim. Learn to recognize the signs and symptoms of TBI. Remember we are all ONE accident away from having or knowing someone with a TBI or aphasia. Always BE KIND.

Person with Aphasia

I had a stroke in January of this year and temporarily lost my ability to speak. I also could not read and had other deficits as well.

Aphasia Changes Your Life

It turned a grammarian and excellent speller into a person who makes a lot of grammatical and typographical errors and now has a challenge with spelling. I had to rebuild my basic arithmetic skills as well.

But There Are Things That Help

Reading aloud has helped. Writing every day has also helped. I mean handwriting. (This helped me with my OT as well.) I have used the Lumosity app, which has been a challenge, but also very helpful reestablishing some cognitive functions.

And Things You Learn Along the Way

Breathe. Be kind to yourself. Being stressed out or very fearful works against you. Figure out what you can say and start from there. I could only say “thank you” consistently. Even if you cannot say words, try to read (anything) and try to remember the names of objects and people. At first, I could not read, so I tried remembering my family members’ names and the Lord’s Prayer.

What Caregivers and Professionals Can Learn From Me

The return of words can be triggered by different things. I smelled coffee while being wheeled into the hospital, and I said “coffee.” The paramedic was shocked, but I was not able to say it again until my speech fully returned. You cannot see how hard a person’s brain is working. Please be patient.

Want to Be Featured in a Future Article?

Aphasia Threads is an on-going project created by the National Aphasia Association. If you’d like to be featured, don’t leave a comment.

Instead, please read the opening post for more information or fill out our form and we’ll contact you.