While we Jews don’t believe that Friday the 13th is an unlucky day – Friday, January 13th, 2012 was one of the worst days of my life. It was on this day that Cheryl and I learned that Abigail has JIA – Juvenile Idiopathic Arthritis – Arthritis found in children that has no distinct cause. It is probably an autoimmune disease. Fortunately, many children grow out of it and we hope this will be the case for Abigail.
For several weeks leading up to January 13th, Abigail’s right wrist was swollen. She couldn’t move it. We thought the problem was related to a fall she had at Universal Studios last Thanksgiving. But, x-rays showed no brake. There were no torn tendons or ligaments. An MRI, however, showed swelling of the joint and damage to the cartilage – telltale signs of arthritis. We were sent to one of the few pediatric rheumatologists in Florida – but had to wait three weeks for an appointment.
During those three weeks, I did what I tell many of you not to do – I went on-line and googled “arthritis and children” and I was bombarded with website after website of confusing, frightening and conflicting information – all of it a parent’s worst nightmare. But, as we did not yet have a definite diagnosis from a pediatric rheumatologist, I prayed to G-d that this nightmare would not be mine. On Friday, January 13th, as I sat in an exam room in Delray Beach with Abigail – who at this point was fed up with being x-rayed and used as a pin cushion – I learned that my prayers were not answered. The pediatric rheumatologist confirmed that Abigail had JIA – my nightmare was now a reality.
Within minutes of the diagnosis the doctor was explaining that the damage to Abigail’s wrist was severe. Her cartilage had eroded which meant that the arthritis had been there for some time, which was shocking to us. How had we missed it? How had it not bothered Abigail!? There was a risk of permanent damage to her right wrist that could result in permanent lack of movement. I was being flooded with information that I did not want to hear. I was feeling overwhelmed and it got worse. The left wrist was affected too. My mind flashed to some of the information I read on the internet – something about the severity of JIA often being linked to how many joints were affected. Before I could ask about this, the doctor gave me the first good news of the day – no other joints, at this point, were affected.
I breathed. But my moment of calm was shattered when the doctor started to talk about the aggressive course of treatment we needed to pursue immediately – to prevent permanent damage to Abigail’s wrists. The medicine he talked about – pills used to fight cancer, bi-weekly injections that we would have to give at home, side affects that I still don’t want to think about. It was all too much. I went on automatic pilot – all the while my insides were breaking. I had never been so frightened, so angry, so upset, so confused. My mind was on overdrive – filled with questions, fears and the nightmares.
Cheryl wasn’t with us. I had her on the phone. She was hysterical. I had to be strong for her and, of course, for Abigail – who all the while was playing on her iTouch – wonderfully oblivious to what had just happened.
I remember agreeing to begin the treatment protocol and the next thing I knew, Abigail was taken for yet another x-ray. This made her angry. But not as angry as when she returned and learned that she would be getting a shot – her first of many shots that would hopefully bring her arthritis under control. In the moments before the nurse administered the shot, I remember asking myself – am I doing the right thing? Am I protecting my child? Am I going to make it worse? I had never felt so helpless and out of control.
The car ride home from Delray Beach was spent beginning a long argument with my insurance company over filling and paying for the injections that would need to be given immediately. Initially, I was told I had to pay $5,000/month for the injections. Fortunately, I have a big mouth and by using it to talk to the right people, I managed to get the cost reduced significantly. But – before the prescription was filled, the insurance company had to get things approved by everyone and their brother. As I drove down 95 on Friday the 13th, the red tape associated with the insurance company only added to the storm that was brewing in my head and in my heart.
When we got home, Cheryl and I had our own private meltdown together and then sat with Abigail to see if she had any thoughts, questions or concerns. She was pretty calm. Much better than her parents. Annoyed by the bi-weekly injections – but okay. What she didn’t know, but was about to learn from us was that, upon doctor’s orders, her favorite activity – Krav Maga – an Israeli form of karate and self defense – was about to come to an abrupt end. The strain on her wrists was too much. We gave her the bad news.
This is what it took to make reality set in for her.
The tears started. As did the expected: “this isn’t fair” and “why me!” cries of a 10 year old. While expected – this didn’t help me at all. My kid’s body wasn’t working right and now her heart was broken. Cheryl was in a cloud. And I couldn’t do a thing to make it better. While I wasn’t angry at G-d, I felt far away from G-d. I had prayed with all my might that the nightmare unfolding before me would not happen – and it was…and it all felt very un-godly. It felt un-holy. It felt chaotic.
We were now just a few hours away from Shabbat and, for the first time in my professional life, I decided that I was simply not able to pull myself together to lead our community at Kabbalat Shabbat services. I let the Cantor know I wouldn’t be coming. The Jacobs family hunkered down and prepared for a dark Shabbat.
But, we were in for a surprise. Unbeknownst to me, Abigail had grabbed some flyers at the doctor’s office that advertised an upcoming Broward County Arthritis Walk. As we sat down for a Shabbat dinner that we somehow managed to pull together, Abigail put the flyers on the table and announced that she wanted to create a team for the Arthritis Walk and raise a lot of money to help find a cure for her disease. Cheryl and I were stunned. We were stuck somewhere between “your child has arthritis” and “you will have to inject her with medication twice a week,” but Abigail was planning to walk in an event that was 3 months away. “We have to fight this stupid disease” she said. “I am not going to let it stop me.”
The chaos in my head subsided just a bit as I processed what my 10 year old daughter was saying and read the flyer.
“Are you sure you want to do this?” I asked “You will have to let people know that you have arthritis and you will have to work hard to raise money.”
“Dad,” she looked at me. “I have nothing to be embarrassed about. And I have no choice, I have to fight this and do what you and mom always tell me to do – make a difference.”
And, at that moment, on that Friday the 13th of January, on what should have been a very dark Shabbat, suddenly there was light. There was clarity. There was order in chaos. Cheryl and I finally caught our breath. We looked at each other and realized – we were okay. Jonah added his voice to the conversation – “I want to be the captain of our Arthritis Walk Team!”
Before Gd reveals the Torah to Moses at Mt. Sinai, we are taught that there was fire, wind, thunder claps, lightning flashes, and a thick cloud of smoke upon the mountain. The earth shook violently and the air was filled with the shrieking of a very powerful shofar blast. As the Israelites took in this horrific scene, each of them shuddered.
I can totally relate to this shuddering. This storm on Mount Sinai perfectly captures the chaotic storm raging in my head on January 13th.
Poor Moses! He was expected to communicate with G-d in that storm – he was expected to receive the words of G-d – the Torah – the stories we still place at the center of our tradition – as the earth shook and the air filled with smoke and the shofar cried!
And Moses did just this. The Torah explains that amid the chaos, Moses would speak and God would answer him with a voice.
We are taught exactly what this voice is in the First Book of Kings:
And behold, Gd passed by (on Mt. Sinai), and a great and strong wind rent the mountain, and broke the rocks in pieces…; but Gd was not in the wind; and after the wind an earthquake (hit Mt. Sinai); but Gd was not in the earthquake; and after the earthquake a fire (spread on the mountain); but the Lord was not in the fire; and after the fire a still, small voice (came from the mountain. Gd was in this voice). (I Kings 19:11-12).
Despite the chaos, G-d communicated with Moses in the form of a still, small voice. In Hebrew – this still, small voice is a bat kol – or literally – the daughter of the voice. At Mt. Sinai, the bat kol rose above the noise, penetrated the smoke, pushed through the storm AND revealed the truth – the Torah – to Moses.
As Cheryl and I sat at our Shabbat table on January 13th and shuddered as we were surrounded by the overwhelming storm of Juvenile Idiopathic Arthritis, a bat kol – a daughter of the voice -– our daughter, her voice – revealed to us the truth and spoke Godly words – “I have to fight this”. And with these words – our bat kol brought peace, holiness and Gd back into focus for us and filled us with hope and determination.
Soon after that Shabbat dinner, Abigail created “Team Abby”, which walked and raised a lot of money for the Arthritis Foundation of Broward County. She was featured as a top fundraiser for and supporter of the Arthritis Foundation and we are planning to do more fundraising for and education on Juvenile Arthritis.
We have been working closely with her doctor down here and with another pediatric rheumatologist in Chicago to fight Abigail’s arthritis. Today, she is no longer taking any pills – just her bi-weekly injections and she has regained total use of her wrists. The swelling is gone and, most importantly, Abigail has slowly begun to return to Krav Maga and just recently broke this board. She is indeed a fighter.
But, more than that – she is a bat kol – a voice for Gd that in the darkest of moments can bring light to darkness.
I believe that each of us can be or are surrounded by these voices of Gd – people or even just moments that lift us higher – above the chaos.
Even though we are taught that on this the holiest of nights we stand right before Gd, Avinu Malkeinu – our Parent our Ruler – and ask over and over again for forgiveness, it is very easy to feel disconnected from Gd. This is because, tonight, we are supposed to wrestle with the darkest parts of ourselves – trying desperately to grow and improve – and this can make us feel helpless and alone. We need Gd tonight – but tonight, like on many other nights, Gd is not so easy to feel, hear or experience. Tonight, like many other nights, you might feel, as I did back in January, that your prayers to Gd are not answered. Perhaps this is because all of the noise in your life has made it impossible to hear your bat kol,that still small voice that is there – calling out amid all the noise – giving you the inspiration you need to be better, move forward and go higher this year. The Rabbis teach us that to this very day – that bat kol that spoke to Moses at Mount Sinai – issues forth – it speaks….the question is, does anyone hear it? Tonight, a bat kol is speaking. Do you hear it?
Several months after hearing the bat kol at our Shabbat dinner table, all four of us experienced it again. This time, it came not in the form of spoken words – but written words. On August 1st, we took the kids to Ground Zero to teach them about 9/11 and remember that dark day that still haunts so many of us. I lost a family friend on September 11th, Dennis O’Connor Jr. We planned to look for his name on the granite memorials that surround the pools marking the footprints of the towers. We were also asked by dear friends who we met after moving down to South Florida in 2002 to look for their brother’s name, John “Pepe” Salerno who was also lost on September 11th.
Fortunately, with the help of maps, they have made it quite easy to find the names of the deceased despite the fact that there are more than 3,000 names and they are not alphabetized.
We were surprised to see from the map we received upon entering Ground Zero, that both Dennis and Pepe, who, as far as we know, did not know each other, were located not only in the same section – but on the same large slab of granite. What we didn’t know until we got there and saw it ourselves was that Dennis and Pepe’s names were right next to each other. What are the chances? 3,000, non-alphabetized names!
This was not chance. This was not coincidence. This was a bat kol. Issuing forth from these two names etched in granite, this bat kol lifted Cheryl, me and the kids above the sadness and horrors associated with Ground Zero and gave us a tiny glimpse of the Divine. The bat kol didn’t explain. It simply was. A godly message that literally brought some order to the chaos. A message that taught us that Dennis and Pepe were connected not just by our post 9/11 relationship with Pepe’s family, not just by words etched in granite – but by the awe-inspiring, incomprehensible power of Gd.
Tonight, if you are truly doing the work of these Days of Awe, you might very well be exhausted and overwhelmed by the challenges that lie ahead of you this year. You might very well be in desperate need of a sign, a message, a call from Gd. Tonight I want to tell you that what you are looking for is out there. But your life is too noisy. The storm in your head is too strong. You can’t hear your bat kol. Psalm 46 teaches us: “Be still and know that I am Gd.” Tonight, try to be still – just for a moment. Breathe. Try to quiet the noise, the storm – just for a moment. Be still.
In that stillness – that brief moment of silence – you can hear the bat kol – shining a light, urging you forward, filling you with the hope that you so desperately need. Please, use the next 24 hours to be still and know that the inspiration you hear and see and feel is, indeed, a bat kol, a Gdly voice urging you to move forward.
2 Comments
Such a relief to read something from another parent. My daughter is 17 and was diagnosed at 3. She’s great much of the time, but the toll it has taken on me emotionally and financially is felt. Thanks for sharing your story.
Thanks for writing Sheila and your daughter is in our prayers.