12 Days of Tap 2018: Day 10
We Found A Home
– Mary Lucas and Ken Boggs –
What TAP means to us…
When Ken’s stroke occurred on May 20, 2018, life changed dramatically and forever for both of us. He awoke from this event with Global Aphasia. He has challenges both in understanding speech and word finding. This is complicated by Apraxia, which prevents him from imitating word prompts.
He spent 4 days in the Neurological ICU at UNC Hospital, and then about two weeks as an inpatient in our skilled nursing facility at Galloway Ridge, the Continuing Care Retirement Community in Pittsboro where we live.
After his inpatient stay, he returned home, receiving Physical Therapy, Occupational Therapy and Speech Therapy here in the apartment. He was physically independent very soon and graduated from PT and OT in about three weeks. He continued to receive Speech Therapy from wonderful Nancy Vallejo 5 times a week. This has gradually decreased to 2 times a week currently.
Luckily we learned about the Triangle Aphasia Project from several sources, and I contacted TAP within a month of Ken’s stroke. We started going to the weekly Chapel Hill Support Group meetings in July. I’ll never forget Ken’s reaction to the first meeting. He came away energized and stated clearly: “I didn’t know! I didn’t know there were other people like me. So many..different..but same.”
I remember thinking we had found home.
Ken has been positive about attending the support group meetings from the beginning, and makes sure that they are on our calendar. He feels validated, included, and wants to help others in the group. He’s a cheerleader for everyone. At the same time he receives encouragement and guidance from Abbe Simon, our dedicated, enthusiastic, and resourceful facilitator and acceptance from all the participants in the group. It is a lifeline we look forward to every week.
We also went to a Learning to Speak Aphasia session in Cary and found this very helpful. Every person who has aphasia has an individual challenge, as each person’s experience is slightly different. But as Ken says, “So many..different..but same.”
The books suggested and the resources we have learned about through TAP are invaluable.
Most of all, we feel we are not alone as we struggle to communicate with each other, with our friends, and with strangers. The people we have met through TAP who are on the same path and face the same struggles have become important in our lives. Everyone gives to one another in his/her special way. Aphasia cuts across all economic, educational, gender and ethnic boundaries. Through TAP, we have all come together as a community to enjoy and to help each other.
Bravo to TAP. We are truly grateful for this wonderful organization.
From the TAP Home Office:
There is a certain moment during every Consultation appointment that we complete at TAP, wherein the client and/or the caregiver realizes that the cliche phrase of “TAP Family” is anything but cliche. It is what has been created by individuals who create a community of others who “get it” and are committed to helping each new family feel the embrace and support of each TAP client and family and staff/group leader. It’s amazing…
There is also a certain moment during the first group meeting for any new client. It usually starts with the introduction and a somewhat cautious attempt to tell the others in the group that they “know”…they “know, but just can’t get it out”. The response is always the same…always one of “yep, us too” and an instant acceptance and virtual embrace. These two moments are so well described by Ken and Mary and we so greatly appreciate their time in sharing their story.
Story Addition: Of note… since this was written, at the most recent Chapel Hill group meeting… Ken walked in to group to see two police officers standing by talking to the group leader, Abbe. They had never heard of APHASIA … After Ken realized he wasn’t being arrested (!!), he proceeded to identify his medical ID bracelet that says “aphasia “ as well as verbally explain what happened to him as a result of his stroke. The officers were enlightened, appreciative, and I think, really glad they met Ken and his group mates. Importantly, it was clear that Ken felt proud to have advocated and educated !! I LOVE this story… Advocacy by clients is the very best form…as they say, “Nothing about us, without us.”