Memories of MS. 2010.
My ex and I don’t speak anymore, but I felt compelled to share the experience of the beginning of Multiple Sclerosis for her. Life is painful and beautiful. Maybe someone else can relate to this.
Early one morning in November of 2010, Amanda opened her eyes to the sound of an alarm clock in a dark hotel room. Immediately she noticed the room spinning. She felt dizzy and nauseated. She tried to sit up and a rush of disorientation swept over her body. Her head was spinning furiously. She realized that she was slurry, like she was drunk. It was one of those moments when you know something is wrong. Very wrong. And she groaned. Now was the worst possible time to get the flu.
“Just great,” she murmured to herself. She had a flight out of New York in eight hours. She hated flying. Now she’d have to fly nauseous. As she stood from her bed, she felt the need to run. To the toilet. To vomit. Violently. But running wasn’t happening. Nor was walking. Panic set in. The room was tilted, so it seemed, and any movement would result in a fall. She crawled to the bathroom. She threw up. More than once. Make that three times. She collapsed on the bathroom floor to rest for a minute. Just a brief moment… An hour later she slowly raised herself up and stood again, leaning on the bathroom counter. She looked in the mirror, still extremely nauseated. Her light brown, slightly blond hair was a mess. She proceeded to lean over the sink and heave again. Nothing was coming up, but she couldn’t control it. She couldn’t even fully open her best feature, her eyes. She squinted back in to the mirror and splashed her face with cold water. She began to brush her teeth and get dressed. She could walk again. She heaved four more times while getting dressed.
She was a determined woman. Nothing ever held her back. Amanda had a way of succeeding. She had to. There were three children at home that relied on her. Over the last ten years she worked herself in to a management position in a large law firm. She fought through really tough times as well. As if losing her home to foreclosure during a nasty divorce and being left alone with three kids and no support wasn’t enough, she also went through bankruptcy as icing on the cake. She collected herself as best she could, put her hair up and headed out of the hotel room. She wanted to go home to her children more than ever.
A year later, Amanda and I sat quietly in the doctor’s office waiting for the doctor to come in. She’d been battling test after test for a year at that point with no success in finding answers to all the crazy symptoms. We had a solemn moment of silence in the exam room. Not awkward or uncomfortable. Just quiet. There was nothing left to say. There were only questions. Questions resulted in tests, which resulted in more questions, fears, appointments and more misdiagnosis. The tests and wrong conclusions ruled out various potential causes of the symptoms, but the symptoms continued without any answers. Unknown symptoms created a sort of panic within. Dizziness to the point where walking and driving seemed like a bad idea. For a week solid. She found herself occasionally unable to complete sentences. Additional fun came in the middle of writing on a piece of paper and out of nowhere her hand stopped writing and refused to continue. And then there was the prickly sensation running up the entire length of the left side of her body. Stroke? Heart attack? Brain damage? Seizure? So she went to the doctor. And another. And another. She worried. All the time. And I watched her go through it. Did she need heart surgery? Was she having strokes? Was it a neurological issue? Worse, was it a brain tumor? She was given blood thinners. Those sucked. But day after day she took them. She had headaches, nausea, pains, and strange sensations. Emotional trauma was at a high level. It went on and on and on. Until this moment. The doctor walked in.
I remember that moment clearly. It was a Monday. It was November 7th, 2011. The doctor looked somber. She sat down. Then came the words from the doctor, “Your symptoms are now presenting like M.S.” All of the strength went out from us and everything became a blur. The tears flowed from Amanda’s eyes and she sobbed. I held her as best I could. I comforted her. I kissed her. I didn’t know what to do. There was nothing I could say. I could only be there.
I don’t remember anything the doctor said after those words. Luckily we both wrote down our thoughts later that day. I wrote, “We got the news from the doctor today. It was not by my strength but His that I was able to comfort her. She began steroid treatments until 6:30 PM. It’s all a blur and it’s killing me to see her in pain. But, I will trust Him. That’s hard right now. I promised Him I would.”
Amanda wrote, “Well, so, it turns out I have MS. So… I prepared for the worst. I did a lot of research. I talked to doctors (this doc even has MS) and really felt ok. But hearing it…the doctor’s voice resonated and almost echoed when she spoke the words. She said it several times throughout our conversation. Ok. Ok. Lesson: you can’t fully prepare for any news. Ever. So I had a moment. It was brief, but, nevertheless there was a moment. Jason was a trooper. A rock. There were many touches and kisses and kind words. It was so much better hearing it with him than alone. Infinitiless better. God is so smart. So it’s taken almost a year from my first “episode” to diagnosis. In hindsight (I’ve been saying that a lot lately) I see God’s crazy work here. He’s made adjustments and ripples, there have been no mistakes. God intricately placed people in my life over this year. Almost forced a few. He nudged me gently and reminded me that I cannot do everything on my own. And I had nerve to question that. He prepared me by helping me clear out the mess I called life and start new. I believe he helped those he placed in my life prepare for the relationship to come with me. Not the relationship that was with me. Man I love Him. Because I’m a little nudgy myself, I had my first high-dose steroid treatment today (intravenous). The whole procedure takes about an hour and a half-and I can taste the stuff, which is gross. I’ll be taking mints tomorrow. Vodka on Wednesday. How am I feeling? Relieved.”
After three days of steroid treatments, she was given a referral to a specialist. She finally called her friends and family and gave them the news. One friend of the family was a doctor. And, better yet, he had MS. She had a great, long talk with him and was relieved to hear words from someone who understood the disease to reassure her that life was not at an end. The second doctor, a neurologist with an MS specialty, seemed to be a gift from God. She was older. Tough. Straightforward. No nonsense. She was blunt. We liked her. Doc Two said, “Based on your symptoms I can definitely say you have MS.” That brought a choking moment of silence from both of us. Amanda welled up in tears, although she always chose the role of being tough, this was too much to process. Doc Two continued, “Now let’s go look at your MRIs.” We looked intently at the alien-like pictures of her brain and spine. It was clear by the small white spots, lesions, on the brain and spine that Amanda had scarring.
We learned that this scarring was the result of the immune system attacking her body’s myelin. Myelin is the ‘electrical tape’, so to speak, around our nerves. And once damaged or eaten away, it doesn’t grow back. The exposed nerves and damage causes an unknown plethora of symptoms like, but not limited to, fatigue, depression, pain, anxiety, inability to walk, pain, fatigue, sensations of needles, prickly feelings, pain, wetness when one is dry, fatigue and on and on. Yes, I purposely repeated the two symptoms she experiences most. The first anti-MS medicine she was assigned is called Avonex. It slows the progress of MS, in most patients, a percentage. The percentage is different in every patient. And what side effects, more troubling, are different and varied.
It was a weekly injection with a rather large needle deep in to her thigh. We alternated legs and spots each week. A nurse came to our home to train us on the injections. Amanda was told that she would have flu-like symptoms. That was an understatement. Amanda volunteered me to give her the shots weekly since she couldn’t stand the thought of self-injecting. I didn’t blame her. I hate needles. I don’t even look when blood is drawn or when I’m getting a simple flu shot (from a much smaller needle, mind you). We practiced with the nurse on a small leather cushion with syringes full of saline.
After my needle boot camp, it was time to give her the first shot under the home nurse’s supervision. My hands were shaking. I was nauseous. I was shaking. I was a swollen mess of emotion. I wanted to be strong for Amanda. I didn’t hesitate to do it, but I didn’t have to like it. As instructed, I plunged the needle deep in her thigh and injected the liquid. A tear came from my eye unwillingly. And another. I couldn’t stand seeing her like this. The love of my life was going to endure this for the rest of her life and it tore me up inside. I had to walk away for a minute and let the nurse finish up while I collected myself.
Maddie is Amanda’s teenage daughter, now 16. She has long, beautiful thick, dark brown hair and an angelic singing voice to accompany it. Maddie helped break the tension of the moment after the shot by making fun of me crying.
“Are you crying Jason?!” she smiled. In a nice way. I wiped away my tears and took a deep breath.
Later that night, the medicine began to kick in. She began to feel flu-like symptoms. As the night went on, the symptoms worsened. They were scary. Her body began to shiver. It wasn’t cold in the house. She said she was freezing and wanted blankets. She began shaking uncontrollably. I felt her skin and it was cold to the touch, like that of a dead body. I covered her with blankets. She shook. I covered her with me. She shook. Maddie came to check on her and helped provide extra body warmth by lying on the other side of her mom. It was a shivering Amanda sandwich. We couldn’t warm her. I fed her sleeping pills and ibuprofen. She shook. She cried. I cried. It was an awful period of time that seemed to last for hours. Finally she calmed down. And she rested.
After a year and a half of painful shots, weekly at first, then every other day, Amanda has learned to cope with the symptoms. Small tingling and the feeling of having wet legs comes and goes. But the pain came to stay. It’s a pain like you went to the gym, after having not gone for years, and worked every muscle as hard as you could. The next day when you can hardly move and your muscles hurt badly and are stiff is much like what she feels all the time now.