“You have a 100-degree curve — and 60 is considered critical. Miraculously, your internal organs are still intact, but we need to do surgery before it’s too late…”
y new husband and I set out to live our happily ever after. Hashem quickly let us know that this wasn’t our life plan.
Our new neighbors knocked on our door, thrusting plates of welcome cookies in our hands. When my husband answered the door and thanked them for their offerings in slurred speech, they all did superb acting jobs, and then backed away slowly.
“You’re so special,” they said, or “What’s your story?” There was no right question. Welcome to life in the middle — we weren’t that special-needs couple, nor could we be called normal.
My past quickly caught up with us. My chiropractor pushed my shoulders one way and my hips another and happily pronounced me straight. But there was no denying it: I wasn’t straight, and I was in way too much pain. Pain that stopped me functioning and from being the wife I so desperately wanted to be. So I tried another chiropractor. “If you do my exercises every single day for rest of your life, there’s a chance you’ll be fine,” Chiropractor No. 7 said.
“But what if I get pregnant and have to go on bed rest? What if I’m sick...?”
It didn’t seem doable. It cost a fortune. And there were no guarantees… I cried daily over what I couldn’t be, over the seemingly impossibly path ahead. Gently, my husband pointed the way out.
It was time to take a look at the options in his book. With years of taking care of his own medical needs, he showed me another way.
“The doctors have answers. I wouldn’t be where I am today without their help. Let’s see what they have to offer you,” he soothingly suggested after yet another crying session.
My eyes hurt from the tears. Perhaps it was time to try something new. My husband quickly used his contacts to get us an appointment that week.
The orthopedic doctor was kind and brutally honest. “I usually only see patients with this extreme degree of scoliosis coming in from India,” he said. “You have a 100-degree curve — and 60 is considered critical. Miraculously, your internal organs are still intact, but we need to do surgery before it’s too late…”
I was scared of needles. Surgery? Twelve hours of surgery?! It was an option — it was hope for a normal future. Doctors were the reason behind the current normal life expectancy of Marfan patients; it was time to let them show me what they could do. I had a husband I cared about like nothing before — I had too much that I didn’t want to lose, I knew in that moment that I had to do this.
“What are your summer plans?” was the question of the season.
“Surgery,” I repeated again and again. The looks I got in response said something along the lines of Oh, so that’s why she married him.
I wanted to answer that I married him because he is an amazing person, because we have so much in common — he’s my hero — and though I may have been too blind to marry him had I never had a medical condition, I would have missed out on marrying an angel.
Even as I begged Hashem to tell me why I had to go through surgery now, I thanked Him for my seeming defect that led me to my soul mate. The neighborhood packed up for their summer vacation, and I packed a suitcase for the hospital.
I held on tight to my snood and teddy bear, as they wheeled me into surgery, I was a grown woman, yet felt six years old again. I prayed that it would go well. I prayed that one day I could give my husband the same support he had given me. I prayed to live. I prayed that one day, I could use my story to help others. I was in my shanah rishonah, with my new husband waiting outside the operating room, when the world went black.
To be continued…
Originally featured in Family First, Issue 512)
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