Meet our Community: Tony

We’re grateful for Tony this month, who shared a bit of his journey with us. Tony - a Central Oregonian of 36 years - is a car lover. Though he isn’t able to drive his 1946 (!!) Chevy pickup as much as he’d like due to the cost of diesel, his Ford Focus picks up the difference and takes him the average 400-500 miles a week that he travels for medical trips. When he’s not dreaming of cars, he’s cuddling his sweet 14-year-old dog Babe, aptly named as a puppy for her rooting and snorting!

Tony's Story

When Tony had a stroke, he knew his life would be changed forever. He didn’t know how much he would learn about communication and our culture. Over time, though, he has found unexpected allies, sometimes foes, and an understanding that sometimes little kindnesses are actually not that little at all. 

About a month ago, Tony came to our Redmond Library drop-in site for help with a recent Social Security letter he received. The letter stated that his benefits would be suspended because he had over $2,000 in his checking account. For folks receiving SSI (Supplemental Security Income), there is a hard cap on countable assets at $2,000, or their benefits are at risk. 

This limit is largely unknown to the general public, and it is a rule that really limits any upward mobility for folks on SSI. Some folks can set up a specific savings account called an ABLE account for extra money - but only if their disability started before the age of 46. An alternative is to start a trust, but that is usually outside the financial means of those we serve. Essentially, folks who started receiving SSI after the age of 46 are prohibited from having any type of financial cushion or emergency fund.

Tony’s Social Security was everything for him - housing, income, food. He was nervous. Everything depended on getting his Social Security back, and talking to someone to make that happen brought its own challenges. 

When he met with Outreach Advocate Emily, the first thing he did was hand her a small, laminated card. It read, “I have aphasia from stroke. Aphasia means I have trouble understanding you, reading, writing, and speaking. It is a medical condition. I am intelligent but need some help with language. This can be frustrating for me.” On the back of the card it read, “To help me: Speak slower with simpler language. Give me a minute to respond. Shut off loud noises so I can concentrate. Ask me if I understand. Give me eye contact while speaking.” 

Tony has handed this card to many people, but he is never sure what type of response he will get. In some folks, he finds kindness and care: the ladies at his bank, the people at his rehab facility. They look him in the eye, treat him with respect, and wait for him to process and respond. In others, he has found discomfort, and sometimes rudeness.

In the first meeting between Tony and Emily, it took a minute to learn how to communicate with each other. Since then, Tony says he has felt comfortable. Tony says of Emily, “You’ve been real good. What really helps is you will look at me when you speak.” For Emily, being more aware of how she communicates and adjusting accordingly has opened up her understanding of communication. She says, “This has forced me to slow down. I am such a fast talker; I have really tried to make sure he knows and sees and feels that I do not care one bit how long he takes to find his words. I am here for him.” 

What has been truly eye-opening for Tony, and Emily, is how sometimes services intended to be supportive can miss the mark and become the challenge. After their first meeting, Emily joined Tony on a trip to the Social Security office. Aphasia makes phone calls difficult for Tony, so going in person to meet with someone is preferred. He can see their mouth in addition to hearing their voice, which helps him comprehend. However, this only works if the person he is talking to is able to honor his request for eye contact. With Emily present, she was able to be a bridge for communication between the worker and Tony. 

Tony has had multiple interactions with service providers where he feels dismissed because the provider doesn’t take the time to read his aphasia card. When folks don’t know they should look at him when they’re talking, he doesn’t understand what they are saying, and both parties can get frustrated. 

Tony said that if he is by himself and perceives that someone is rude, he can sometimes be rude in return. And unfortunately, when he is tired or if he’s worked up, his speech can get worse, which can lead to him being dismissed entirely. Tony shared that many assumptions have been made of him - that he’s drunk, that he isn’t smart, that he is drug-seeking. 

“When you’re in a situation like me, I see the people roll their eyes; I pay more attention to that now than I did before. Because I’m watching you speak, I see you roll your eyes, or make sounds because you don’t understand my problem.”

Sometimes a person’s discomfort with a different communication style becomes apparent quickly. They might repeat their question, get louder, or interrupt Tony altogether. “Sometimes people throw 20 words at me,” and it is just not helpful. 

He has also struggled with navigating the complex nature of stroke symptoms and post-stroke effects. When his symptoms increase, he gets worried and goes to the ER. He is worried about having another stroke, but sometimes his symptoms are unexplainable, and he can be repeatedly discharged with no solutions. 

What Tony is experiencing is not uncommon.  We can easily make assumptions about others, not because we don’t care, but because we simply don’t take the time to pause and check ourselves,to listen. Our lives can push us to be going all the time, and in that we can miss the needs of others around us. 

This is a call to all of us to be more deliberate with our own intentions. There is so much more to notice, appreciate, and be a part of when we slow down.

>> At the time of writing this article, we got news that Tony’s Social Security was reinstated - and at a higher rate than he was receiving in the past! He now receives retirement benefits, which give him the ability to be a little more flexible with his income. We’re so glad he came to see us that day at the Redmond Library!