12 Days of Tap 2019: Day 4
A Decade of Determination
– Joan English –
From Maura English Silverman:
As Founder and Executive Director of TAP Unlimited, the honor of sharing these 12 Days of TAP stories fills my heart with faith in the need for our services, and gratefulness for the community who allows it to continue to thrive. When individuals learn of the fact that my own mother has suffered a stroke and lives with aphasia, they often say “Oh, so that is why you started the program, right?” or “Oh, she’s lucky to have a speech therapist in the family” (she actually has two!)…but here’s the truth. My mom was TAP’s biggest fan. Having started the organization the year my dad passed away, it provided her another place to give of her passion, her time and love. She volunteered at events, shared every small achievement and encouraged me a million times when I felt frustrated by the challenges of running a nonprofit.
Until the cold winter Thursday afternoon when everything changed. As my son, Austin, said so well, “TAP was always something that I just saw as my Mom’s job, until ten years ago when my grandmother became one of their patients. I was, from there on, dedicated to my Grandma and TAP on a personal level.” It’s analogous to the cobbler with the broken shoes. I know how to help others and their families…but how do I do this? How do I practice what I preach? How do I believe in a Life Participation Approach to Aphasia when that Aphasia was in my own backyard?
Well…I leaned in. I leaned into my family, my friends, my colleagues and my “second family”, TAP. We faced this life altering curveball with the tenacity we’d had as a model all our lives. And today, 10 years to the day of my mom’s stroke, we are still standing…. Oh, don’t get me wrong…we stumble. But we lean in again and gain support. We hope, as a family, that our experiences give you strength and faith in what we created in TAP.
Austin once again summed up my mom’s journey with the wish we have for each of you: “TAP has provided her with the opportunity to regain her strength and build relationships with individuals with similar experiences.”
Once upon a time…it’s how all good stories begin, right? Of course they do…and then they all end up with “happily ever after.” Unless you are human, that is. Because every story, every life, has triumphs and tragedy, celebrations and struggles, and the totality of the story results in a legacy that is unpredictable from the turn of the very first page.
Joan English has always been, from my perspective, a combination of Florence Nightingale, Mother Teresa and perhaps Joan of Arc. Big shoes to fill, I understand, but ask anyone who knows her and they will validate the many reasons why I saw her this way throughout my formative years. She was, after all, born to serve others, nurse anyone and everyone who needed compassionate care and sacrifice without consideration of the impact on her own self. She has also always been a prophetic and skilled writer…one who could invoke passion, self-reflection, and yes, even a little guilt, with her lengthy prose in the form of stories, journals and parental feedback letters! (If she ever gave up her career in nursing, I’m certain Hallmark would have opened a position for her in a heartbeat.) As a Registered Nurse, she worked tirelessly in every position to ensure that her patients received everything they needed, even if they didn’t realize they needed it yet. Her nursing nature continued beyond her retirement, as she would swoop in to save the day with relatives, friends and complete strangers with her gentle, reassuring voice and touch.
And en route to provide this innate nursing care to her family on 12/17/2009, Joan suffered a massive left hemorrhagic stroke. A PA State Trooper saved her life on I-81, and she began what would be a long and arduous journey, at Hershey Medical Center in the Neuro-Intensive Care Unit. The continuum of care from acute rehabilitation, day treatment, outpatient therapy and involvement in TAP was all too familiar for me…almost routine. Except that this was my mom.
And the new perspective I gained from watching family members and her friends, medical providers, etc. navigate this journey altered the dream of what TAP was, and what it needed to become. You see, since its inception, TAP had focused on individuals with aphasia…provision of ongoing programming that challenged the traditional therapy model and allowed individuals challenging, engaging and hopeful travel along this rehabilitation journey. But what about the children and grandchildren? The out-of-state friends? EMS workers who came to rescue her from a seizure or a fall? How were we assuring that the family, friends and community were well equipped with the tools to help a person with aphasia live successfully with aphasia?
Our metamorphosis from Triangle Aphasia Project to Triangle Aphasia Project Unlimited was the result of another completely selfless gift from the woman who taught me everything I know about being a good person, a caring provider and a determined agent of change. Truly, I used to call it “the great cosmic irony”, citing the unfair nature of aphasia striking down the gifted verbal and written voice of my own mother. But it all makes sense… it’s as uniquely her as any chapter in her story. You see, my mom has continued to help hundreds and hundreds of people through her own struggles for communicative access, her need for advocacy in the absence of vocal power and her ability to express the range of emotions with a coy shrug of her shoulder, a shy inviting smile and those warm Irish eyes. She has changed the scope of our program, allowing us to expand to new and necessary service divisions and inspired innovative program additions that will impact the families dealing with aphasia for years to come.
Anyone who has ever heard me speak or entertained me telling my personal narrative knows the great respect and admiration I have for my mom. They have heard stories of significant health challenges (i.e. additional bleeds, seizures, falls, etc.) and remarkable comebacks. They sit with me in awe at her determination, grit and consistently positive attitude. They get it. They see her purpose and are inspired by her story. They understand, as I do, that this woman lost her language, but never ever lost her message.
There are so many individuals who could rightfully add to this 10-year reflection, but I wanted to give voice to a few important people in her life.
From Bob (Joan’s “baby brother”, 5 years her junior):
It has indeed been a Decade of Determination and Resilience on her part. For those of us who love her, it’s been a Decade of Inspiration as well. I have never heard her express anger about the consequences of her stroke and have marveled at her acceptance of the limitations that are imposed on her.
The obvious impact of her aphasia on me and my family is the difficulty in communicating with her, whether by phone or in person. She remains so mentally sharp and that makes the frequent inability to say what she means so frustrating.
Certainly not aphasia alone, but her aphasia and the other consequences of her stroke have more sadly impacted my family and me. She was my wife’s premier caregiver and best friend, and I know my wife missed her terribly during the last 5 years of my wife’s life. Each of my sons has so many fond memories of your Mom and so much affection for her, and I regret that because of the limiting consequences of your Mom’s stroke, including aphasia, my grandchildren have no connection with her.
From Joe (Joan’s first born and only son):
Mom’s aphasia has presented challenges in the quality and duration of our interactions that involve back and forth communication — especially by phone. Mom has always been very involved and tuned in to all of our lives. Aphasia has turned those interactions into fragments of conversations or dead ends, as Mom struggles to access a word or get a point across. Sometimes she will eventually give up on it, saying “never mind.” I know it is in her mind what to say, but the word or question will not come out.
We have learned so much about aphasia through TAP resources and watching Maura work with Mom. I have learned to be patient and encouraging when Mom gets stuck, rather than try to guess what she might want to say. I’ve learned that, although her first response to a question may be “no“, if I am patient, she may correct herself and give the answer she wanted to.
I have learned that aphasia did not rob Mom of memory or access to music, so I will often start a phone call by singing a familiar song and listening to the lyrics come easily to her. I’ve also learned that aphasia did not lessen mom’s sense of humor and mischief. I always try to make her laugh when I speak with her, as her laugh is so natural and authentic.
I watch my children use humor to connect with mom. She gets so much joy from a short telephone call or FaceTime communication.
None of us take for granted those precious few minutes of a phone call. She ends every call by saying she loves me (usually to the moon and back). The feeling is mutual!
Jane (the baby of the family, her other precious daughter):
10 years ago, our lives changed forever. Phone calls and desperate searching until we got word of where Mom was. I got to her side while she still had some words, or at least that’s what I remember. She looked so scared, and I told her we loved her and that we were there. Acute care and family together got us through those first crucial days and then riding with mom in an ambulance to WakeMed. It was Christmas time – difficult, long and trying to celebrate the slow gains. It was yesterday, and it was 1000 years ago.
- This woman, a caregiver to all
- No comparison: her kind, authentic, caring and forgiving nature
- Her selfless nature
- Her eloquence in speaking
- Her long tear-jerking speeches at special meals
- Her incredible love and sacrifice for her children and grandchildren
- The model of a loving wife
- Her journals written with her beautiful handwriting and sentiments, which allowed all who were fortunate enough to travel with her a rare gift of vivid memories
- Her voice; her phone calls, her supportive conversation through the good and tough roads of life
What’s different is difficult for me and for my family. But her – the absolutely loving soul and person is there, and I am so incredibly thankful for her unconditional love and her new voice. I say those who meet her now will never know my mom, but her resilience, grit and sweet soul…. It transcends any physical/communication barriers.
Thank you for allowing us the opportunity to jump back into the 12 Days of TAP on the 10-year anniversary of a stroke that impacted a person, a family and an organization. It is an honor to walk this journey with each of you.