On Yom Kippur afternoon we read a section of the Torah known as the holiness code. This section, found in chapter 19 of Leviticus, is at the heart of the Torah and contains some of the most moving commandments within our tradition. We asked two of our members to reflect upon one of these commandments. They did so just after we chanted from the Torah. We are grateful for their personal and moving insights which are shared below:

Bret Parker 

Transcript:

I’ll never forget that day in January 2007 at the age of 38 when I walked into a doctor’s office expecting to be told that the slight tremor in my right hand was no big deal.  

Instead, the doctor told me I had Parkinson’s disease.  

My immediate thought was how soon am I going to die.   

I was transported from being a happy, professionally successful, married parent of two wonderful boys into a dark place.

How does one react to such jarring life-altering news? The “holiness code” in Leviticus 19-2 instructs us that “You shall be holy for I, your eternal God, am holy.” Holiness is marked by things such as honesty, integrity, justice, charity, love and devout worship. How does one live a holy life and move forward when faced with such tough news?  

Back to my diagnosis.  

My wife, Katharine, sprang into action purchasing every book about Parkinson’s she could find.  I came to learn that Parkinson’s is a degenerative neurological condition with incredibly varied symptoms. They include everything from the tell-tale tremor and stiffness, to loss of smell, sleep disruption, constipation, memory loss, cognitive decline and, for some, dementia. The pace of the progression of the disease is unpredictable. But for everyone, it is eventually crushing – at least until we find a cure.

I spent the first 5 years after diagnosis in a state of denial. l told very few people and changed little about my life. I wasn’t being honest with myself or others. In other words, I was failing the “holiness” code.

Over time, the symptoms slowly worsened and were becoming noticeable so I decided to come out – to be honest. I told everyone about my disease.  

To my surprise, instead of being rejected as someone less able, less worthy, or requiring pity, I experienced acceptance and support. I was relieved to be living a more authentic life that didn’t involve concealing my disease.  

I became involved with the Michael J. Fox Foundation and started serving as a mentor to others who were trying to figure out how to live their lives with the disease, especially young people like myself. I also became involved in fundraising for the Foundation through Team Fox.  

I started small, with a 5-mile run for charity. I told myself that Parkinson’s did not have to limit me. I could push myself, spread the word about the disease, and have some role in funding research to eradicate it.  

As each year passed, I began to take on challenges I never dreamed of tackling before my diagnosis. For example, as a child I fell into a swimming pool. I was so traumatized by that event that I have always been terrified of the water. Yet, I signed up for a triathlon, as a Team Fox fundraising event, after taking remedial swim lessons that barely improved my swimming competence.  

I can still remember race day. Shaking with my Parkinson’s tremor that worsens with anxiety or excitement – I think it was both – I waded into the water and began swimming when the start whistle blew. I stopped frequently and often doggie paddled wondering if I would finish.  

Everyone passed me. Toward the end of the swim, the race organizers moved their kayaks near me and started pulling up the race buoys as I slowly passed each one.  

They asked whether I needed help or was ready to give up. One kayaker looked like he thought this might be his Baywatch rescue moment.  But I waved them away and emerged at the other end of the beach, ran toward my bike, and transitioned to the next phase of the race. I managed to finish and raised around $50,000 for Team Fox.

As the years passed, I took on greater physical challenges including completing the World Marathon Challenge – 7 full marathons on all 7 continents over 7 straight days. It was during training that I picked up the slogan that guides all of the challenges I’ve taken on since – 
Do – Epic . . .     Well, I’ll say Do Epic Stuff as the Yom Kippur-friendly version of the mantra.  

Since completing the 7-7-7, my symptoms have continued to progress and I realize that Doing Epic Stuff might take different forms over time so I’ve picked some less outrageous events.  Last month, I completed a 56-mile bike ride. Over the past decade, my friends and family have helped us raise more than $850,000, which is approaching my personal goal to raise $1 million dollars for Parkinson’s research.

So back to the holiness code. In preparation for today and in contemplating Leviticus 19, I asked myself, is running marathons and doing triathlons part of leading a holy life?  

I think that one interpretation of the commandment to live a holy life is to take on life's challenges with as much strength and positivity as possible. By persevering and striving to be honest about living with Parkinson’s, and taking on challenges for charity, I am trying in my own way to fulfill the code.

Am I more holy? Upon reflection, taking on challenges and talking with others about Parkinson’s has fulfilled me in ways that are truly epic and increased my love for life, for others, and for some higher purpose. Perhaps this is what the command means, “You shall be holy for I, your eternal God, am holy.”  

When I was diagnosed, it was a big blow at first. I didn’t immediately take on the approach of living life to the fullest. There was a transition from those early dark days. But my journey, and yes, Parkinson’s itself, has been the way I have become more honest, involved in charity and experienced love – from my family, friends, and this Congregation — including the clergy and staff at Central who have supported me constantly as I, and my family, live with Parkinson’s.  

It may sound odd, but my journey eventually even led me to be thankful in a way for what I’ve learned from the disease.  

My life is richer, my friendships deeper, my commitment to this synagogue stronger now than before my diagnosis.  

Surprisingly, Parkinson’s helped me carry out at least some of the commands of Leviticus, and in turn brought me divine moments.

If this isn’t an example of how the holiness code works, I don’t know what is.

Steven and Barbara Kessler

Transcript:

[Steve began]

Good afternoon. Thank you for inviting Barbara and I to speak with you today on Yom Kippur. In Leviticus, Chapter 19, Verse 2, we receive God’s primary commandment: “You shall be holy, for I, the Lord, your God, am holy.”

Through studying Torah, we learn that we may personally experience difficult challenges during our lives.

We also learn, that in spite of these challenges, we can strive, through following this commandment, to live meaningful lives, helping others, helping our community.

I will share with you my personal experiences as Barbara’s husband, father of our children, and caregiver. 

Unfortunately, seventeen years ago, Barbara had a serious, near fatal stroke.

What do you do when you receive a call from a hospital in the middle of the night, asking for your consent to do emergency high risk brain surgery on your wife?

Barbara was as an inpatient recovering from surgery.

Alone at 5 am in the hospital, I was afraid and confused.

Would she survive?

Fortunately, Barbara survived, but suffered a serious stroke. 

Barbara was transferred to the Burke Rehabilitation Hospital.

Could she have another stroke? Would she ever talk or walk again? How do I take care of our three children and continue my professional career? I was a lawyer actively involved with international banking and finance.

Fortunately, after several months as an inpatient at Burke, Barbara started to recover, thanks to her fierce determination. Barbara had aphasia which impairs her ability to speak. However, to our pleasant surprise, while Barbara could not talk, she could sing Hebrew prayers and enjoy music. 

Barbara continued to show her courage to work toward her recovery as an outpatient.

What has helped Barbara and our family during her recovery? We looked to our group of friends, as well as our synagogue community, to support and encourage us.

Upon Barbara’s return to our home, we embraced her with a lot of laughter and music, to help promote her healing. We resumed attending religious services. We supported Barbara’s efforts to do volunteer work.

We are both committed to a fundamental Jewish value, Tikkun Olam, repairing the communities in which we live. We started our national advocacy activities promoting rehabilitation medicine and the patient/caregiver experience. 

In 2007, two years after Barbara’s stroke, we started to attend Friday evening services at Central Synagogue. Our daughter, Cantor Liz Kessler Sacks, had joined the wonderful clergy team. Liz sends her warmest regards to her beloved Central congregation. 

Why are Barbara and I here today with you?

On this deeply holy day, we offer our personal message of hope, as well as our call to action. Torah teaches us to embrace and include the needy and the vulnerable. Leviticus, Chapter 19, Verse 14: “You shall not insult the deaf, or place a stumbling block before the blind.” We can help each other heal, by caring for, and including each other.

As stated in Leviticus, chapter 19, verse, 8, “Love your fellow as yourself”.

Barbara, I admire you for your daily courage to live a happy, fulfilled life, dedicated to our family, friends and community.

 

[Barbara continued:]

I have three children and four grandchildren.

I was trained as a professional librarian, working at public and private libraries, including the Columbia University Law School. I had the privilege of working with Supreme Court Justice Ruth Bader Ginsburg, when she joined the Law School 
Faculty.

This morning, I want to share with you my personal journey to recover from my stroke.

My stroke injuries include having aphasia. Living with aphasia means I have difficulty speaking; not knowing for sure what words I am about to say. I will make mistakes. So forgive me, as I speak to you today.

When I had my stroke, it was five months before my daughter’s wedding, Cantor Liz Kessler Sacks. My daughter Lauren was in college. My son Adam was in high school. 

In a moment, my life changed forever!

Imagine: You couldn’t talk to your husband or children. You couldn’t read or write. And I'm a librarian! You couldn’t walk. You needed help to get dressed. You couldn’t use the telephone or computer. I had to stop working and lost my job. Losing my job was very upsetting. Loss of speech was my greatest challenge.

While being a patient at the Burke Rehabilitation Hospital in White Plains, I was worried: Would I ever walk or speak again? Could I care for my children?

At Burke, I received intensive therapy. I had to re-learn everything to be able to live independently. I worked very hard, trying to get better and stronger. I hoped to be able to dance at my daughter’s wedding. It was the wonderful therapists at Burke who helped me start to recover and gave me hope.

Additionally, I was lucky to have a lot of personal support: Steve, my family and my friends. Rabbis Gordon Tucker and Neil Zuckerman, and Cantor Jack Mendelson visited me. I needed their spiritual support.

After I came home, I had full time caregivers, especially, Carmel Hall. Helping me in every step of my recovery.

I also continued to have a lot of out-patient therapy. I walked every day to improve my walking. I had speech therapy every day to re-learn how to speak. I read the newspapers every day to re-learn how to read. I joined several stroke communication groups and book clubs.

I  resumed doing volunteer work. I  joined the Board of the National Aphasia Association to help people with Aphasia and strokes. I joined the Board of Student Advocacy, helping troubled students at risk stay in school. I volunteered at the White Plains Hospital taking a book cart around with books and magazines speaking to many patients. I spoke to First Responders, police and fire departments and social workers.

 My stroke changed my life forever!

However, I am here today speaking to you. I am grateful for the many years of support of Rabbi Buchdahl and Rabbi Salth. Shabbat services at Central are spiritual to me.

What I have found to be most helpful in my recovery is: Trying to live my life actively. Being with my family, friends, and community. Join communication groups. 

I want to encourage other stroke survivors and caregivers. 

My message to them is:

You can get stronger.

You can have a good life.

By the way I did get to dance at both of my daughters' weddings.

On Yom Kippur, may we  join together, helping, and supporting each other.

Thank you for inviting me today.