Recently I watched a documentary film called “Brain on Fire” about a young woman, only 21 years old with a rare brain disease causing encephalitis, swelling of the brain, caused by an autoimmune response in her body, making her body attack the right hemisphere of her brain. She began having seizures and emotional and physical outbursts and behaving crazy, scaring family and friends. She deteriorated into a catatonic state, baffling most doctors, except one. Unfortunately, I could completely relate.
After my doctors, found a rare form of cancer in my body, we decided to do surgery to look for more cancer , to be sure we weren’t missing any. So, they removed a portion of my colon. The recovery from this procedure was supposed to be uncomfortable perhaps, but uneventful and resolve in a week to ten days. But, for me that’s not what happened. Within the first week, my body rebelled and my immune system went into overdrive and began causing symptoms that didn’t register in any measurable, scientific ways at first. I began telling doctors that I felt like I was on fire on the inside. Like hot lava was running through my veins. Within 24 hours, I began to experience what seemed like tremors or mini seizures, that at first affected only my face and head, but soon spread to my entire body, and occurred in a predictable time frame, every 20 to 30 minutes. I could watch the clock, and countdown to the next one. I was terrified of what was happening to me. Doctors and nurses stopped communicating with me, as they turned their attention to investigating and trying to solve the problem. No one could explain what was wrong with me.
I began to deteriorate quickly, and finally overheard a nurse begging a doctor, to give her permission to talk to my family about how dire my circumstance was, but he forbade her and said, “we must wait to see which organ will shut down first and see if that turns into a domino effect we can’t pull her back from, until then, we wait, keep searching for an answer, and do everything we can to get her more comfortable, I don’t care how, get creative, work the problem, don’t create more.” Thankfully, I had a Christian nurse that night, and she did her best to help me, she assured me that an entire team of doctors were working hard to “fix me” and she told me she was praying for me, as were others. That comment helped me the most.
The next 72 hours were filled with some of the worst suffering physically I have ever known. But, even with what I overheard, the possibility of my death, inside I felt better. I knew my recovery wasn’t really totally up to them, but truly up to God. I turned my attention toward prayer, and accepting whatever outcome He would bring for me. I tried to cooperate with my suffering. I told God I wanted to live, but would welcome death instead if that was best. I felt inside though, that my family would suffer the worst, they were not truly prepared to lose me, though that had been the struggle that entire year so far. Now it was more of a real possibility.
In the midst of my greatest suffering, one young doctor suggested that I let my nurses try some unconventional, yet simple therapies to see if they could relieve my pain. Since I felt like I was on fire, even though my vitals didn’t register that fact, he said, “let’s treat it as though you really do have a fever.” Let the nurses bring you some ice packs, and put them in the places that you think are on fire and see if it helps. It sounded ridiculous to me. I insisted, ‘“but it’s not real’ that would be a waste of supplies, and a lot of work for the nurses”. He insisted it was part of their job, and they were all on board to try it. “Everyone just wants to help, and see you feel better, even a little better, we can’t give you any more pain meds, or anything else to stop what’s happening, but at least we can try to make you more comfortable. If you’re brain thinks you’re on fire, then you are, so let’s agree and try to treat that.” Reluctantly I agreed and soon the nurses were busy getting me more and more ice packs until we used all those available on my hospital floor and needed more and more over the next three days.
I never really slept much, each time I relaxed and would dose off, a strong tremor, seizure would begin and those wore me out. I felt Like my life was draining out of me. I was still very scared, but I had to admit to the doctor, the ice packs did help. At one point, piercing pain was happening to my left ear and hearing, (there is an injury there already) a weak spot if you will. I began screaming at one point the pain and vibrations in that ear were excruciating, so we did the same., as we did with my body. We tried to ice my ear. This time ice didn’t help, but heat did. Now we were strapping heat to my head with a headband, and ice packs around my body, while 5 machines full of various fluids, and medicine, were all attempting to keep my body functioning. I felt, though, like we were fighting against a losing battle. I could no longer eat or keep food down, so I was tethered to a tube in the wall as well. I felt like a prisoner in my own body, I kept thinking, ‘it wasn’t supposed to be this way’. It would be ironic, if I survived a rare form of cancer, only to now die because of a routine surgery looking for more cancer.
I felt like the ‘bride of Frankenstein’ and I definitely looked frightening, even to those in medicine. But everything my doctors and nurses did, actually helped me cope while my pain and suffering threatened to take my life. Some nurses were quite afraid to take care of me, and I could understand why. A few days into this cycle, I was going to be alone without family. I was afraid of that. If I deteriorated suddenly, and couldn’t speak anymore, I could die alone. I remember, asking my daughter to help me figure out who could handle my awful symptoms and still stay by my side. It turned out that my youngest son, was able to stay by my side during the worst of my symptoms and talk me through the extreme pain each seizure caused. He was only 16 at the time. My daughter kept saying, “he’s mature for his age, and gentle. He can do this for you. I will prepare him, and he will be able to handle it.” We talked about it, could he handle it, if things got worse? My family had endured the death of both grandmothers and were present when one passed away. I didn’t want to expose my son to that possibility again, but my daughter encouraged me, “someone should be here, and it needs to be someone you love, who loves you, just in case.”
Thankfully, I made it through those three terrible days, and was in the hospital for 40 days total. It was a long, slow, hard road back to normal. God was so faithful, to hear my prayers, work through my wonderful doctors and nurses, and provide care through family during my most frightening hours.
Grief and loss can be just like, my physical trial, but at an emotional level. You can be so overwhelmed you wish your pain would end. You struggle to want to live. You struggle with wanting to die. You try to find things to help you feel better, but nothing really helps for very long. Each day feels like forever, each moment as though it’s in slow motion, or frozen in time. Everything is hard, even the most simple things. And You believe this will go on forever. Relief will never come. You’ll never get better. You’ll never feel normal again, you’ll never be whole again.
That experience, and the loss of my daughter now, remind me to remember, to identify what my needs are and ask for help to meet them. My doctor said it was okay to ask for help, to not feel guilty about it, and allow myself to lean on family, friends, and them to get well. It was difficult for me to do that. But so worth it. Had I refused help, I might not be here today. Had I fought against the process, maybe my recovery would not have been as complete. Healing came slowly because the trauma was great. Dependence on God and others might not be what the world says is good and okay, but that’s what made all the difference. I wouldn’t have survived alone.
In your grief and loss, find the support you need, be creative, keep fighting to find your life again. Don’t give up. Maybe everything is awful now, but it won’t always be that way. Try to believe you will get better, your pain will lessen, your heart will heal. You won’t forget what you’ve been through, but blessings may come your way in the midst of your suffering. Ask for what you need, and don’t quit until you find the support that helps you get through each day, one moment at a time, one day at a time. Don’t forget to pray, God sees you and knows what you need.
Let Him provide. Susan