I have received a tremendous response from the article I wrote about my 19 year old son’s death from bi-polar disorder. Many parents and other family members are struggling with similar issues and wrote me privately seeking advice on how to keep their own children from following Doni’s path. My heart aches for them as I feel their desperation and pain. I wish I could reveal to them the ultimate secret. But if I knew the answers, Doni would still be here today.
I don’t know how to cure mental illness, or how to alleviate its pain, or how to motivate someone to stay alive. But I do have some insight into how I learned and grew, lived and even smiled through those challenges. That is something I can share.
My daughter Elisheva lost a twin baby and a brother this year. She hugged me as I buried my baby just a few rows away from hers, and we both cried together about adulthoods we’d never enjoy.
Now its eight months since her baby died and seven weeks since her brother died and she and I were alone in the kitchen. “How are you doing inside?” I asked her.
“Okay,” she said, confirming what I thought. “But, you know what I really don’t like?” she continued. “I really don’t like it when people come over to me and say, ‘Wow, you’ve have a really hard year’. I know they mean well, but I just want to tell them: I’ve had some really hard weeks in a really good year.”
I was so proud of her. I asked her how she came to that thought. With a twinkle she said, “That’s how you raised me!”
Elisheva is my oldest, and easiest. She is the one God tricked me with. He gave me her first so that I’d want a bunch of children just like her. And then, in His wisdom, He gave me a bunch of children with bunches of challenges. She was there from the start to watch me cope with it all.
One had ADHD and was flying all the time. It was hard to keep track of him, he moved so fast. Another moved so slowly that she earned the nick name “Molasses in January”. A few had learning issues: this one dyslexic, that one with auditory processing issues, this one with hearing loss, that one with sensory integration problems, this one with anger management and chutzpah challenges, that one with executive function disorder. My husband joked that our family is like a magazine rack—we have so many issues!
As the children grew, so did the challenges. I read, and learned, (ate chocolate) and consulted with teachers, and I grew along with them. The more challenges I faced, the more Torah I needed. More effective than chocolate, Torah actually illuminates pathways to increasing one’s capacity. If the challenges were not going to disappear, it was either concede defeat or rise to meet them. As a child I loved to sing, “Rise and shine and give God your glory,” so I chose to rise.
The first thing I needed to do was reframe. It took a decade of work, listening to hundreds of tapes and reading dozens of books, and praying that it should all sink in, but I finally came upon my own understanding of “test” or “nesayon”. It is a custom designed workshop from Hashem, lovingly created just for me, to best further my soul’s growth and development. Once I began to see the hard things in this light, I could see the love in them as well, and the love gave me strength to trust and plow forward.
I have a friend who asked me, “Why bother trying so hard? If you pass one test God just gives you another, harder test!” We both had sons with mental illness. She told me she feels like she is always trying to catch the bus… always running behind in the dust and exhaust, always running, but never catching it so she can sit down.
I see it very differently. If a child wants to be a doctor, he first needs to take middle school science. After passing the tests on that level, he can understand and gain from high school science. After he graduates high school, even if on the top of his class, he must take science in college again, but on a much higher level. Then he has to cram even more to take the MCATs and only then can he begin his medical studies. It’s only after a lot more tests that he can finally become a doctor.
The completion of each test does lead to a more a difficult course of study and to harder tests, but level by level, it helps one grow and increase capacity until one is ready to realize a lifelong dream. The prize for “passing the test” is not that you get to be a doctor, but that you become the person who can be a doctor.
So too with our souls. We are here to use this world and its circumstances as tools to grow and nurture our true inner selves. We are gifted with the opportunity to go from level to level, from test to test. So of course we can never “catch the bus;” there is always something more to accomplish. But I don’t feel like I’m running in the dust and exhaust.
Did you ever open a gift only to find another gift wrapped inside? And when you tear off the wrapping paper from that box you see there is another and yet another? Each one is smaller than the last, but we all know that good things come in small packages…
But I’d rather have a sparkling connection than a sparkling stone. When I learn a Torah nugget and grow through it, I feel like it is such a gift. But each time I tear off the wrapping paper and delve deeper there is a bigger gift inside, and when I open that one, the gift inside is even bigger. For me, it is a never ending journey of discovery, sometimes in text, sometimes inside myself, sometimes in relationships, sometimes in how I can feel, sometimes in what I can accomplish, sometimes in what I can’t accomplish. I love never knowing what is around the corner, but knowing with certainty that there is something good, and if I reach for it, really stretch, I can have it.
Sometimes the workshops are really hard. Like seeing a baby turn blue and rushing him to the hospital, or dealing with a defiant child, or having very judgmental relatives, or having a school reach the end of its tolerance or ability for one of your children, or losing a friend, or losing a job. And sometimes they are even harder.
One of my “in the moment” coping strategies is a Jewish form of meditation. I have a few verses that I use to help me focus my energy and shape my experience. Sometimes I sing them, making up a tune. Sometimes I chant them over and over. Sometimes I visualize each letter in my mind’s eye. Sometimes I can squeeze just saying it once into the trying moment. For scary times, I say the last line of Adon Olam, “God is with me, I will not fear.” For confusing times, especially for times when I think the circumstance “should” be different, I say, “There is nothing else but God.” When I want to elevate my mood, I say a line from Hallel, “This is the day God has made, let us rejoice and be happy therein.” When I am brimming with thankfulness, I say, “Give thanks to God, His kindness is everlasting.” It is important to find verses that personally resonate. I settled on these after looking around a bit for what I really liked.
Trust & Acceptance
Another important strategy is building trust and acceptance. I work on really feeling: “Things are just the way they are supposed to be.” “I am being challenged at my growth point.” “I am capable of doing what is necessary to not only get through this, but to grow through this.” The tool I use for that is prayer. I do a lot of direct talking to God, in whatever words come at the time, like talking to a caring father.
And I use the siddur. In the morning blessings where it says “who makes for me all my needs” I try to think in two ways: Thank you God for taking care of all my needs (if I don’t have it, I must not need it, please help me accept that), and also, Thank you God for creating all my needs. (I wouldn’t need what I need unless You made me need it. You must think this need is good for me. Please help me feel thankful for it.)
Building trust, feeling bitachon, is a long term process. Each attempt creates an additional layer, even if very thin. But, eventually they add up. I try to add layers when I say blessings on food. The blessing “that everything was made according to His word” helps me remember that “this situation (whatever is happening right now) is designed by God, it couldn’t be this way unless He desires it”. If He made it, it must be good, even if it’s hard. The after-blessing “who creates many types of life and their deficiencies” reminds me that even missing pieces are gifts.
Sometimes I compare people to Swiss cheese. Swiss cheese has holes by design, and so do we; our holes are not mistakes. They are opportunities to become co-creators with God, to fill in the blanks He left for us, to create ourselves in the image of our choosing. Whether it’s a hole in myself, or in someone I am dealing with, I strive to see it as an asset rather than as a liability.
Expanding Who We Are
For prolonged challenges I could do nothing less than change and grow into a new person on a daily, and sometimes on an hourly, basis. As Jews, it is our first, and perhaps most powerful, tool. Immediately after we exited Egypt, God commanded us about the new month and said (according to Rav Hirsch) “this newness shall be to you the first of newnesses” Ex. 12:2. A deeper level of meaning tells us, “Don’t be stuck how or who you are. Make yourself new. It’s in your hands, take the initiative, become who you chose to be.”
The strategy I use for that is tucked inside a verse many say on a daily basis, “God, open up my lips that my mouth will declare your praise” (Ps. 51:15). In Hebrew the word for “my lips” (safatai) can also mean my borders (as in sefat hayam) or my boundaries. So I have this thought in mind: “God, I am only this big, I am limited in my accomplishments, and whatever I have achieved so far, I am not big enough to handle the task at hand. So, please God, open up my boundaries and allow me to flow to places that I have never flowed to before. But please, don’t let that flow go all over the place. Please help me channel it so that my mouth shall declare your praise. Please help me be Your servant and do Your will.”
I say the verse as its own prayer when I need it. But I also say it in its usual place in the beginning of the silent Amidah prayer. I first take three steps back, say the verse and then take three steps forward. As I step back, I imagine actually stepping out of my former self and leaving my limited “shape” behind, much like a lobster molting. Then I allow myself to pray, outside my shell, in a place of hopeful vulnerability, until I am able to assume a new shape at the end of the Amida when I step back into my (hopefully) new self. I can’t say I have these thoughts every time, but when I do, they are very helpful.
It has been a very challenging and growth producing last couple of decades. But the kids are growing too, three are married, two are in college and as Doni’s high school graduation approached last spring, I told my husband that I finally see a light at the end of the tunnel. He laughed and teased as he told me that that light is actually an oncoming train.
Who would have thought his words would be so true? I thought about them as the freight train of Doni’s death slammed into our family. But over the years I have learned: even if the train hits hard, and even if it really hurts, if you catch it, you can go very far.
May we all merit to catch the trains and ride them far, deep into our new selves.