In 2002, I gave birth to my fifth child. In the months leading to his birth – and, on occasion, for years before – I suffered from head pain. Doctors would give me medications and attribute the pain to sinus infections. After my son’s birth, the pain started to get worse. Again I tried some medications. Life was stressful with an infant and four other children below the age of 10; a little pain seemed normal. In September, my husband started a new job, and we decided to purchase a catastrophic health plan, to cover the family for the three months until his new job’s insurance would kick in, rather than pay thousands per month for COBRA, which allows for continuation of the previous employer’s policy. The plan we purchased for the three-month period covered catastrophic events after a considerable deductible. The headaches continued and got progressively worse. I made an appointment to go to the doctor at the beginning of December, when the new policy would begin, but G-d had other plans.
On Friday night, November 28, the first night of Chanukah and a day after Thanksgiving, we were enjoying our Shabbat meal. I went into the kitchen to serve the main course but did not return. My husband came into the kitchen and found me sitting at the table staring into space and non-responsive to his call. He rushed to a neighbor who was a doctor and was told to dial 911 and get an ambulance immediately. I was rushed to the hospital, and the children were taken by a neighbor to their home. I had apparently had a brain seizure. And thus the journey began.
In the upcoming days, many members of the community pitched in to care for our children. The infant of six months was the biggest challenge, as he had been nursing and refused to take a bottle. Baruch Hashem, a mother from Yeshiva Lane was able to cajole him into taking a bottle after much effort. My health situation was quite precarious. When I arrived at the hospital, it was discovered that I had a tumor in the base of my brain, which they planned to remove the following day. The tumor had become so big that it caused me to have a brain seizure. In retrospect, my husband remembers seeing me freeze on the steps coming down from the bedroom, and I remember instances when I was suffering terribly while in the car doing carpools. Bechasdei Hashem (in G-d’s mercy), the seizure came when I was home with the entire family and not alone with the baby or driving a car.
The following day, they were not able to do the surgery because I developed pneumonia. The pneumonia was treated, and the surgery was performed five days later. After the surgery, my tongue swelled so much that it was hanging out of my mouth, making me unable to breath. Although the doctors are not sure what caused the swelling, they believe it resulted from being on my stomach with my head down for the entire nine hours of the surgery. Eventually they performed a tracheotomy to allow me to breathe, and then used steroids to reduce the swelling of my tongue. I later also developed post-surgical meningitis and had spinal fluid leaking from my head rather than flowing through the body as it should. In all, I spent six-and-a-half weeks in the hospital and returned home very limited in my functioning. I had to relearn how to walk, as my muscles were very weakened. I had to spend another six-and-a-half weeks in physical therapy and was unable to drive for three months.
For the entire three months, the wonderful chesed organizations in the community were of invaluable help. Gevuras Yarden supplied all meals for the entire time. Bikur Cholim took me to endless physical therapy sessions throughout the time. It was winter, and the weather was quite treacherous. My mom, who was 66 at the time came, became mom to a family of five, including an infant. These three months were a quite trying time for the entire family.
I can’t help but wonder whether the outcome would have been better if we hadn’t been thinking about the money and had gone to the doctor a little sooner. Perhaps some of what happened could have been avoided. If I had gone to the doctor before reaching the point of seizure, the surgery could have been done sooner without the complication of pneumonia. Perhaps it would have been done in a hospital that was better equipped for such procedures and by a doctor who was an expert in this type of surgery.
We had to pay around $15,000, even with the catastrophic policy, because, although the majority of my hospital stay was after December first, when the new job’s policy kicked in, the insurance responsible is determined by the date of admittance. So, we ended up paying a lot and wasting the time.
Ultimately, and most crucially, waiting could have cost me my life and the lives of others. We were blessed in that the situation was survivable. The doctor said that I probably had the tumor from birth, and it grew with any hormonal changes. They told me that people who are born with such things are advised not to have children. B”H, I was unaware of the condition and was blessed with five wonderful children. From this story, however, we learned that your health is much more important than money, and that if you are suffering with headaches or other persistent and troubling symptom, which cannot be attributed to any benign source, you should investigate it further – no matter what the cost.
After this first experience, I was told to have MRIs for five years, and when all was normal after five years, I should follow up only if feeling pain. Fast forward 12 years. My head began to hurt again on occasion. I was sent to an ENT, who said I had swollen turbinates in my nose, which could be causing this pain. Before Pesach, a time of great stress for women, I went for my annual physical. I told the doctor that I had been getting headaches and would like to have an MRI to give myself comfort. I remembered having the headaches years back and what had occurred. He requested an MRI. I made an appointment to have it done the Monday after Pesach. When I arrived for the MRI, I was told that the insurance company had not yet approved it. I made a tentative appointment for Thursday, assuming that the insurance would approve by then.
I went on Thursday morning to have the MRI done and went to work. As soon as I arrived at work, I got a call from my doctor telling me to go no later than tomorrow morning to the ER, either at Hopkins or University of Maryland, because the MRI showed a growth in the same location as the original tumor. He later spoke to the surgeon who had done my original surgery, who said that he no longer did major surgeries and strongly recommended that I go to the ER, because this should not wait to get an appointment with a doctor but should be treated as soon as possible. I went to the University of Maryland on the recommendation of my primary care physician. I arrived at the hospital on Thursday evening. They immediately put me on steroids to reduce the inflammation in my brain and looked into scheduling the surgery. My condition was considered urgent but not an emergency, and they thought that perhaps they would do the surgery on Sunday. That Sunday happened to be the day Freddy Gray died at the hospital, so the surgery did not occur until Monday.
The surgery was a lot easier this time, B”H. It took around four hours, and the growth was found to be only a cyst, which was outside the brain but pushing on it. Unfortunately, the source of the cyst could not be reached, as it was in the brain. From now on, I will have to go for MRIs on an annual basis till 120. Since I had requested an MRI and it was caught rather early on, the surgery was much less intensive. I was sent home within three days. Again the community provided for all our needs.
Unfortunately, I had a reaction to the steroid I was taking and was re-hospitalized on the motzei Shabbat right after my son’s bar mitzva. I was blessed to hear him read the Torah so nicely but missed the party on the following day. The bar mitzva boy’s speech was videoed for me to see, and all other speeches were recorded. Pictures were taken at the event, and my son enjoyed it very much. The joke in our house is that excitement surrounded his birth and his bar mitzva. B’ezras Hashem, his wedding should be uneventful – that is, only the simcha, with no other complications.
From this experience, we learned the importance of caring for yourself and advocating for your health. We also marveled at the wonderful chesed organizations in our community. May we all be blessed with good health, ad meah ve’esrim.
