I started to glue together the pieces of my heart

I’m not going to sugarcoat it.

Parenting an adult daughter who has Multiple Sclerosis (MS) has been painful, scary, and lonely. Especially doing so as a Jewish single parent.

The 4th anniversary of her diagnosis is coming up in April, just after her 28th birthday.  I always feel nauseous around that time of year.

She had recently started her adult life. She made aliyah and was studying neuroscience in a graduate program at Tel Aviv University, in Hebrew. And managing bimonthly Crohn’s treatments and tests and asthma flares. And adjusting to life in Israel and preparing for Shabbat and holidays and making new friends. I was proud and envious and reminiscing about my own aliyah.

She called to tell me she was feeling strange. Left-sided tingling, headaches, weakness, fatigue, and feeling light-headed. And having trouble focusing.  She squeezed her eyes closed inside dark, narrow tunnels, jackhammers pounding from all sides, while Tel Aviv slept.  A doctor at the Mass General Hospital confirmed what instinct told her.

My heart shattered into a million pieces. G-d and I were no longer on speaking terms. My daughter and I teetered on the edge of a crevasse. I tried to hold her steady. She kicked me in the stomach.

With MS,  the immune system attacks the brain and spinal cord and visual nerves. One may lose the abilities to walk or see or swallow or speak or hear.  Dizziness and significant pain and incontinence and brain fog are common symptoms. You could have seizures. There is no cure or treatment. Medications might prevent it from getting worse. I woke up at 3 AM , in a cold sweat.

She burrowed under layers and layers of my heaviest quilts.  The  sky was black all day.

I paced and tiptoed and knocked and she lashed out at me. I listened and sat and listened. A lifetime passed.

She said she wanted to be alone. I walked the dog. She stayed with her sister. I stared at the walls. People who care, told me to move on.  But she is my daughter.  And she was drowning. She flew back to Tel Aviv and I paced and left messages.

I asked G-d why my innocent child had been given chronic pain and illness and IV treatments since birth? Dayenu. What more do you want from her?

I was on a broken raft, being carried out to sea. Her anger climbed aboard and wrapped thick tentacles around my ribcage.  I struggled to breath.

I left phone messages. One day, she called back. She railed and vented, and I listened and expressed empathy and she told me I was not listening and did not understand and could not understand. I felt horrible.  People who care told me to stop listening, but I am her mother.  And she needed me to listen and try to understand.

But sadness was charging through my veins and threatening to burst them. My reservoir of resilience was dry as the Negev in late August. I raised three children on my own and a family member required years of intensive support. This latest health crisis struck when I was at a low point. I dove into the Boston Jewish community and hit a sandy bottom.  I walked miles by myself.

Several years passed. She assembled a large team of traditional and holistic providers. She visited and I visited,  a few times , and we continued to speak every few days.  The earth shifted slightly on its axis.  A tiny voice emerged , then suddenly, it was stronger.

She sounded happy again. I started to glue together the pieces of my heart.

She tells me about her Torah study community in Yafo, where they pray in a circle and about the ornate Beit Midrash in the Florentine district where she ponders Bereishit, and her phone Torah learning with a friend in California. She davens Shacharit on her rooftop. Her rock-climbing gym might be reopening soon.  Kabbalat Shabbat services meet outdoors. She swims in the ocean and walks on the beach. She’s writing a book about Heschel and Torah and health and chronic illness.  The shuk spice-vendor knows her by name and Matulda purrs on her lap.

I know that fatigue and other MS symptoms, confine her to her home, several days every week.

Most of the time, she is isolated. We do not speak about the toll it takes. She changes the subject when I ask. She knows it makes me sad to hear about it.

My daughter’s MS has changed me.  She has taught me to be more present in my own life.  The abilities that I have today,  might not be here tomorrow.

And I have started to attend daily minyan.

About the Author
Rachael is a journalist who lived in Jerusalem between 1987 - 1996. She wrote the ‘Inclusion Matters’ column for the Jewish Advocate and has published articles for Honest Reporting , Friendship Circle and the Parent Professional Advocacy League. She writes for Jewish Boston. A former attorney, she has a master’s in child development. She was an early intervention specialist and special education advocate.
Related Topics
Related Posts
Comments