The doctors did a brain scan. What? Why? They didn’t say anything just yet, but sent me to see a neurologist.

He looked at me. “You’ve had a stroke,” he said.

It had shown up clearly on the brain scan.

I was numb, uncomprehending.

“I suspect it might be connected to your heart. You should see a heart specialist.”

I couldn’t process what was happening. Nothing added up. I went to the specialist, only to be told: “Your heart rate is irregular. You need a pacemaker.”

“But I’m 23, just 23, this can’t be happening.”

They could only tell me that it was happening. They couldn’t explain why. They could only shake their heads and tell me it was extremely rare.

I underwent surgery to insert the pacemaker, then went with my young family to my mom, who lived in another city, to recover. Time passed, I was healing from the surgery, but I still wasn’t getting back to myself.

That’s when the Gehinnom really started. I began the rounds of heart specialists to see why I still wasn’t fully recovering. They found I’d contracted a virus that had damaged my heart muscle.

I also developed postural tachycardia syndrome (POTS). When I changed positions, from lying or sitting to standing, my heart rate accelerated and my blood pressure dropped. I had two little active kids, and with POTS I was so often breathless, I’d get palpitations and feel the energy drain out of me. This wasn’t a life.

I wanted to be a mother to my children, I wanted to be a wife, to feel normal as a person. I pressed on, determined to find someone who could help me.

The doctors were frustrated with me. They couldn’t understand why I wasn’t feeling okay. The damage to the heart muscle shouldn’t have accounted for this much trouble, they said. I started to despair, but I kept pushing on because the POTS was driving me crazy.

I underwent a series of tests. In prone position, standing upright, and the dreaded “tilt table” test. They poked and probed and went inside with cameras. Still, they couldn’t figure out what was wrong. When they ran out of hypotheses, they turned to blaming me. “You’re fine, there’s nothing wrong with you. You should see a shrink.”

I started to doubt myself. Maybe I was crazy? Maybe this was all in my head? But then I’d go home and try to look after my kids, and my heart would race. I was breathless, energy-less, slumped on the couch. This demon was all too real.

Parenting in Pain

I have a large circle of family and friends, but who could I really talk to? I didn’t know any other people in their twenties who’d had a stroke, had a pacemaker put in, and then had further complications.

I was constantly feeling faint and running low-grade fevers. Then I developed IBS and intestinal issues. If that wasn’t enough, old gynecological issues were flaring up again. From time to time, I’d experience cramps and spasms on the level of labor pains. I was struggling, trapped in a body where so many of my organs were giving me grief.

There had to be an explanation, something that would account for this host of issues.

It would come many years later. But back then, the doctors were stumped, and I struggled on.

I was a young mom, and while my life was shadowed by my medical sagas, my kids were the color and light of it. I rallied myself for the little people around me.

We had fun times, great times. Kids are kids, they live in the now, drench themselves in life, and we can’t help but get sprinkled with it, too. Because it was just the two of them, we could do quite a bit more than the average frum family. When I could, we traveled, vacationed, gave them experiences. What got us through was that my husband was incredibly supportive. There were no expectations; if I couldn’t put supper on the table, we’d have takeout, no questions asked.

We were creating our own normal. I had many appointments, many hospitalizations (that were, thankfully, always short), I was often in a lot of pain, but I made a point of not shlumping around in a robe, not making myself more nebachdig than I was. I was dressed, I was presentable, I was there for my kids. They didn’t have to know how compromised I was, and for the most part, they didn’t. On one occasion, I collapsed on the floor and my kids witnessed that. But it happened just once.

The Medical Roller Coaster

I’m an open person. I say it like it is. When I’d speak to people and they did that social-babble-hi-how-are-you thing, I wasn’t just going to murmur fine, fine when I’d been writhing in pain moments before.

People were full of ideas and solutions. They sent me to wonder doctors to try far-fetched ideas, and told me bubbe maisehs that had worked for their aunt/neighbor/greengrocer. These treatments required thousands of dollars and swallowed up precious hope.

The hope was hurting me. My life had become a chase. I was facing a gamut of medical problems, there was always something else to run after. There were times I just wanted to throw out all the doctors…. I actually discharged myself from the hospital once. But I needed them, too, and had to keep crawling back to them.

I badly wanted to have another baby, and kept asking my non-Jewish doctor about it. Given my multiple conditions, he was incredulous. I had two healthy kids, why would I bother trying to have another at such great risk?

I asked other professionals, but they kept referring me back to him, as he was my main doctor who knew the full picture. There was one major heart specialist who I heard might be able to look into my case and give me a second opinion. I needed a referral letter, and I asked my doctor to write me one.

In the letter he oversimplified my case, and made me sound ridiculous for even bringing it to the specialist’s attention. With a letter like that, I couldn’t even get an appointment. I was so disheartened, I didn’t push for another way in. I know it’s bashert, but there are times I can’t help but think about that letter….

Part of me was busy feeling bad for my kids and my husband. One day, my brother’s kids were over at my home when he called to say that their mother had had a new baby. My niece and nephew whooped in delight. There was excitement and joy in their eyes. I wanted that for my kids, too. I wanted that for my husband, for him to make that delicious phone call.

My husband is a more introverted type, and he didn’t have anyone to talk to about any part of our situation. I — with my circle of friends, my mom, and my siblings — couldn’t imagine that. But despite how hard it was for him, he stuck by me, and was the strongest support. Years later, he himself had a period of serious illness, and I had a chance to give him back something of the support he’d always given me.

My medical saga continued to play out. There were the regular issues — the myriad appointments and tests and checks — but in addition, things kept coming to a head. I underwent a major gastro surgery, the likes of which they don’t do anymore, because it’s far too risky.

I kept having trouble with the pacemaker, and it had to be replaced five times, each time necessitating surgery, of course.

Then I had a cancer scare. I remember telling a friend about it and she was like, “Nah, you have too much going on, you’ll see, it won’t be cancer.” There was little comfort in what she was saying. A doctor doesn’t talk of the big C unless there’s good reason to. But this time, baruch Hashem, it turned out to be just that. A scare.

Because I was dealing with vastly different things, like cardio issues and gastrointestinal issues, and was seeing unrelated specialists, I had to push myself forward on each issue and bear the responsibility of keeping track of everything. Yes, I’m assertive by nature, but the fearsome responsibility can get to you.

I’m on blood thinners, and my blood levels have to be checked routinely. Once I was flying to Israel and would be due for a blood test during the time I’d be away. When I called my clinic, the receptionist took matters into her own hands. “Ah, you’re not due for your test yet, you can take it when you get back.”

With a long flight coming up, I didn’t want to take the chance of passing out in a stroke or hemorrhaging 30,000 feet in the air. I took the test in a different place and sent the results to the doctors. The numbers were staggeringly high, dangerous. My doctor told me to stop the blood thinners immediately, and then it would be safe to fly. So much for the receptionist who’d played it cool.

What You Don’t Know

My life the last couple of decades has been a saga of waiting, hoping, riding, holding on. It’s been going to the gym and the mall in between and having “policemen” watching me. I thought you were too ill to exercise. You should just do your shopping online.

And on the flip side, there were those who’d say, But you look so good, you don’t look ill at all. Honestly, if I manage to pull myself together and present well, please don’t use that against me to invalidate what I’m going through.

If I’ve learned one thing, it’s that you just don’t know anything about anyone, however put together people might look. And you just can’t judge them if they don’t look put together.

I’ve also learned how far true empathy can go. I’m blessed to have a friend who I got to know way back in seminary, and she’s really been on my team. What an empathetic person! Sometimes I wonder how she can be so in tune with me, despite having a completely different life. She has a large family, lots of her own stuff going on, and yet, whenever I’m in the hospital she’ll send something over. Some pastries, a key ring, whatever. Small things that have created a huge circle of friendship and care.

I’ve learned, too, how much a well-placed remark can warm you. Throughout the years, what I’ve got the most comments about is the small size of my family. I don’t know how this is an area that people feel they can comment on, maybe it’s that 30 years ago it was a more stoic generation, you did what you had to do, and somehow people felt that with my small family, I was getting off easy? Who knows, but I got my fair share of digs and barbs. Once someone said, You have the perfect little secular family, maybe you should get a pet?

I once met a cousin from overseas at a simchah. We exchanged pleasantries and then she asked the inevitable question: How many children do you have?

“Two,” I answered.

My cousin swallowed, looked me in the eye, and said, “They must be so special to you.”

Not pity, not compensating. She got it. She took a minute to think, put herself in my shoes. Not everyone has the social skills to get it right, but we’d do well to stop for a moment before we blabber. Let tact kick in, be sensitive.

Acceptance

A turning point came a few years ago, when I met with yet another doctor.

He suspected a rare autoimmune disease, something that affects the connective tissue, and would thus account for the varied, multiple issues: the heart problems, the gastro problems, the gynecological problems.

He recommended I take a super expensive blood test, and boom, there it was: the disease he suspected.

I researched it online, and everything started to make sense. I felt a huge sense of relief and validation, even as I’d been living with the reality for years. Even as I knew that since it affects the connective tissue, which is basically all over the body, it could hit somewhere else.

I have to live in the now.

I laugh a lot. And I’m not an optimist.

People say be positive, think positive, but for me that meant disappointment after disappointment. Life’s toughened me up. But I have so many light moments as well; I do the funniest commentary on society.

But really, it’s my family — my husband, my children, my grandchildren, my mom, my sisters — who keep me going.

And Hashem. People often tell me how special I am for handling this, that I’m a tzadeikes, blah, blah, blah.

But I’m not that special. I didn’t choose this life, but He sent it. This is what He determined for me. I can’t bribe Him, I can’t run away, I can only face up to it, and daven to Him.

By now, I’ve developed a level of acceptance of the fact my medical file is the thickest on the shelf.

Still, I do have my days. I told my friend recently, “Sometimes, on particularly bad days, I think Hashem takes a look at me in the morning and thinks: How can I bend you out of shape today?”

We’ve come a long way, Hashem and I. He wants something different from me than I wanted for myself. The last couple of years, especially, have been deeply challenging, both medically and in other ways.

But after the Meron tragedy, I was reading and hearing about the people who passed away, the best, sweetest, kindest souls, and I had this moment. I realized that the story was so incomprehensible, it was unfathomable that these 45 people were trampled to death, it could only be Hashem’s love behind it, there’s no other way to wrap your mind around that.

I was having a biopsy done a couple of weeks after Meron, and right then they discovered a hematoma that they had to remove by suction, an incredibly painful procedure. I was lying there, vulnerable and in pain, unable to conjure my usual can-do attitude. For the first time in years, I felt it all hit me. I just felt so low and sorry for myself.

And then I thought of those 45 people, and I felt the Hashgachah, that it could only be from His love, all over again. And I thought, this too, me lying here, not even being able to have a straightforward biopsy, the hematoma, the pain, is bashert too. And I tried — and I’m trying — to feel His love in what looks like a punishment, to complain less.

By now, I’ve learned to trust my intuition about how I’m feeling. I never went to medical school, but it looks like Hashem wanted me to have the knowledge of a general doctor and then some.

I don’t know what else He wants me to learn, but I’m grateful that I’m also learning how to be a grandmother now. Please, Hashem, grant me more years in health to enjoy the nachas.

(Originally featured in Family First, Issue 762)