“My story begins close to two decades before my own world was abruptly turned upside down. When I was 11, my mother took me out to my favorite steakhouse at the time. She chose to bring just me, not my brothers. I was so excited to have all my mom’s attention for the night. What I didn’t realize was this night was not about me, it was about her. As I tried to fish out the cherry in my Shirley Temple, my mom told me she was just diagnosed with Multiple Sclerosis. I didn’t know what it meant, she looked normal to me. She didn’t look sick or scared, she was just my mom. Without even realizing it, I learned at this moment MS is an invisible disease, and just because I couldn’t see it, didn’t mean it wasn’t there.
I began to learn a lot about MS over the following years as I attended conferences with my mom. I saw a lot of people in wheelchairs and using canes. I also saw my mom who still looked healthy. We learned MS has no prejudice when it comes to age, gender, race, or social status. Though it doesn’t shy away from any type of person, it treats everyone differently. Maybe it’s because my mom looked so healthy and she wasn’t in a wheelchair like most of the others, but I never processed she was having the issues I couldn’t see. To this very second I dwell on how I treated her one specific day when I was a teenager. She was having trouble finishing a sentence, as cognitive issues are common in MS fighters. She kept saying, ‘uh’ and ‘uhm,’ thinking of her next words. I said, ‘Uh uh uh, spit it out!’ She swears she doesn’t remember me lashing out at her, but I do. And every time I think of it, I feel my insides slowly rip apart with regret and remorse.
Flash forward to a couple weeks before my 29th birthday. It is my time. I woke up and went to work just like any other day, picking up a soy latte on the way. As I thoroughly enjoyed my morning coffee and got situated at my desk, I vividly remember announcing to my coworkers, ‘Crap I’m pretty sure it’s time for me to get some glasses.’ I was so sure staring at a computer screen all day was finally catching up to me. I shrugged it off and continued on with my morning. By 10 a.m. I could tell something was seriously wrong with my left eye. It wasn’t blurry, and no I wasn’t seeing double. In fact, I wasn’t seeing at all! The entire center of my vision was just gone. I was scared, but for some reason I wasn’t panicking. I’m still a little confused to this day on why I was so calm in this situation.
I didn’t have an eye doctor at the time, as I truly never really needed one up until this very moment. I called the closest one to my office and they got me in as soon as I could drive there. My husband met me at the doctor’s office and helped me fill out the paperwork. It felt so good to have him there just sitting with me as I waited for my name to be called. The appointment began with a simple vision test. You know, the one where they ask you to read the lines of letters. They started with my right eye and I breezed through it. Then it was time for my left eye. She asked me to read the top line with the largest print. I told her, ‘I can’t see it.’
She changed the setting on her scope and asked me to try again. Again I told her, ‘I can’t see anything.’ But this time I could hardly mutter the words as a wad of emotions started to climb up my throat and tears filled my eyes and streamed down my face. That was the very moment when my internal panic set in. Even now, putting myself back in the moment as I share this story, I feel the same emotions climb from my chest to my throat and turn into tears.
After two long hours of various tests, my new eye doctor landed on the issue most likely being with my optic nerve. She rushed me into my first MRI the same afternoon. It was loud and much longer than I was expecting. This facility didn’t have headphones for their patients so the experience as a whole was nothing less than jolting. Also, because I went to a private imaging center, my MRI results weren’t going to be available until Monday. Therefore, I had all weekend to wait and worry. So I waited, and worried.
One of my best friends came over Saturday to help distract me and brought a bottle of vodka and an eye patch. Two necessities at the time. We stood at the island in my kitchen and tried to make light of the situation: the vodka probably helped. She then said, ‘You can’t see anything?’ I pointed to a yellow picture on the wall, lifted my eye patch and covered my right eye and told her, ‘It’s just black. It’s gone. I can’t see anything.’
Monday morning finally came and I got a call first thing from my eye doctor. She informed me my optic nerve was fiery, inflamed, and nothing short of angry. A condition called Optic Neuritis. But why? Well, she couldn’t say exactly why, though this very conversation was the first time I heard the possibility of Multiple Sclerosis. Multiple Sclerosis? I thought there is absolutely no way. When my mom was diagnosed with MS, her doctor assured her it was not genetic. I was confused, even more scared, and I still couldn’t see a d*mn thing. My ophthalmologist consulted an MS specialist who suggested I go to the emergency room to be administered steroids. She said they would be expecting me there to check in. Of course I didn’t know what to expect. I was thinking I would probably be there a few hours, maybe even most of the day. You know how the ER can quickly turn into an all day event.
I get checked in and I feel like everyone is staring at the girl in the eye patch. Were they really staring, or was I just extremely self conscious? Or both? Once I get called back and we all get on the same page about why I am even there to begin with, they get to poking me for an IV. Now, I have what they call ‘squirrelly veins.’ It took four pokes and three nurses before they got my IV in. My money is also on the fact I was dehydrated from trying to drink my fear away over the weekend.
The ER doctor came in after finishing her phone conversation with my eye doctor. She was livid. When I say livid, I mean fiery-red face and borderline crazy eyes. She launched into how unacceptable it was for the ophthalmologist to even mention my optic neuritis might be the onset of MS without doing a thorough evaluation and ruling out all other possibilities. In all honesty, I appreciated her passion. Ultimately, I was admitted to stay at the hospital for a load of tests and a series of steroids to help battle the inflammation. I could definitely write a whole separate story on the effects of steroids alone. Positive and negative. Let’s just say they work, but have some nasty side effects like cold sweats, nausea, body aches, and skin breakouts.
I had another MRI in the hospital, showing lesions in my brain and spine. Lesions. When I hear the word ‘lesion,’ I think of falling down and scraping your knee on the ground. It takes more than a second to wrap your mind around having them in your brain. I also had the pleasure of getting a spinal tap. I honestly don’t remember much about it because the nurse drugged me up beforehand to ease my nerves. The doctors in the hospital did not officially diagnose me, but I was referred to an MS specialist. Okay, well right there is telling someone they have MS. Don’t you think? I would say so. My husband, John, and I were driving to meet with my new neurologist and I just knew I had MS. All the doctors in the hospital basically told me without actually telling me. I knew.
Even though I knew, I wasn’t prepared for the news. When I was delivered this ‘your life is going to change forever’ news, the same lump in my chest resurfaced back to my throat. I fought the urge to cry so hard it hurt. From the very beginning, I didn’t want it to win. The situation seemed even darker as my doctor didn’t look me in the eye when she told me the news. Or perhaps it hurt more because she said, ‘Your life will likely be less fulfilling now.’ Who says this to someone? In any circumstance. It took me just two weeks after leaving the hospital to regain my vision. My husband and I celebrated every day as I could see more and more every morning I woke up.
It’s no surprise I eventually broke up with my ill-fitted neurologist. During the six months I was under her care, she was quick to try to throw prescription after prescription at me. Within the first two visits alone, she tried to prescribe me four medications. I thought, ‘Is this my life now?’ Many people don’t know from a conventional medicine standpoint, Multiple Sclerosis is untreatable and incurable. There are drugs to help prevent your disease from progressing, those are called disease modifying treatments (DMTs), and then there are drugs to help manage your symptoms individually. I was very hesitant to take any drug of any kind because I watched my mom on the slippery slope. She’s the definition of a bad*ss, but for a short period of time she was trapped in the rabbit hole of prescriptions and failed treatments.
So here I am now, not under a care of a specialist because frankly I was so put off by my last doctor I didn’t even want to look for a new one. I was feeling good for the most part. I had daily symptoms like mild tremors and fatigue, but they weren’t bad. My main focus was on my diet by eating tons of fresh fruits and vegetables and ditching gluten and dairy as I read this was the best for those with MS, and it was what my mom encouraged. I was doing yoga daily, not even believing how strong I was getting. I was so dialed in on my health, it was working.
My birthday came around again, and we were at the one year mark with my MS. I say ‘we’ because my husband has been with me every step of the way. It’s almost hard for me to comprehend how he can be so understanding. John surprised me with a weekend trip to Seaside to celebrate my big 30th! I thought, what harm could it cause to cheat a little on my diet during my special birthday weekend? Once I took the first bite of a cheeseburger, though, it unleashed the glutinous savage inside me I had no idea was using my body as a dwelling. You could say I was borderline uncontrollable. I ate cheeseburgers, pizza, an elephant ear, a bagel with cream cheese, sandwiches, waffles, ice cream, and beer. Beer! Beer is essentially equivalent to drinking a loaf of Wonder bread. I went from not eating any form of wheat or dairy in almost a full year to jamming all this down in one weekend.
No doctor ever told me this, but I know in my heart it shocked my body. And when a body living with MS gets shocked, strained, or stressed too hard, it fights back. And it fought back hard. Yet again, I woke up and something was wrong. It was my worst nightmare with Multiple Sclerosis. Something I feared for my mother and came to fear for myself. Mobility issues. I couldn’t feel my right leg. It was numb, it was weak, and I had drop foot. Just like that. Mobility issues. I have never been more scared until this very moment. I acted quickly and was in a new neurologist’s office by 11 a.m. the next morning. While I was there I experienced my first fall, in a bathroom of all places. My leg couldn’t hold me up and I tipped over, slamming my head into the paper towel dispenser. This fall hurt my pride more than it hurt my body.
So many questions were plastering the walls of my lesion-ladled brain. What if I can’t ever walk normal again? What if it only gets worse from here? What if I end up in a wheel chair? Will my husband still love me? Did I do something wrong? Am I going to die early? Am I really going to live a less fulfilling life, like the doctor said? I can tell you my husband still loves me and he alone will fulfill my life to its highest potential. Though some of those questions will always remain unanswered because MS is an unpredictable beast.
I met my new doctor and unlike my last one he seemed caring, knowledgeable, and passionate about helping me. I trusted him and I still trust him to this day. He set me up with a series of steroids, and along with months of physical therapy, I triumphed over this relapse and was able to walk, run, and even snowboard again. Over the next couple of visits my doctor convinced me to start an infusion-based disease-modifying treatment, delivered through an IV. It sounds much scarier than it actually is. As I was getting one of my infusions, I mentioned to the nurse who was helping me I had gone snowboarding over the weekend, and she replied with, ‘Well, at least you can go snowboarding.’
In writing, this actually looks like a nice comment, but in person she said it with such a piercing dictation of pity that it hurt my feelings, probably more than it should have. The more thought I put into it, the more I feel sorry for her for not getting to feel the strength I felt pulling myself back up out of the quicksand of negativity an autoimmune disease has to offer. I welcome sympathy, compassion, encouragement, and even pretending like there’s nothing wrong with me. But please don’t pity me because there is simply nothing to pity.
You can’t see my pain, my numbness, my tingling, my fatigue, my memory issues or even my vision problems. If you could see all of that, my initial response would be to try my hardest to hide it from you. I wouldn’t want any of my anguish to be mistaken as weakness. Because to put it simply, I’m not weak. I’m sure I will have lows, but I can tell you I will have more highs because I celebrate all victories, and my lows just make me stronger. My journey will continue, but I would like to end my story here with a memory I have from when I was in the hospital. Remember my passionate ER doctor? Well, before she admitted me into the hospital, she sat down with me and told me about her friend who was diagnosed with MS a few years ago.
She gave me her story about how she remained active and designed her life to be as stress free as she could. How she decided to nourish her body instead of fight it. How she swam every day, and even moved to a new state which brought her more joy. She ended this little story by telling me if I did indeed have MS, my life is not over. Before she left she said to me, ‘I am going to prescribe you happiness.’
It’s the one lifetime prescription I will keep.”
This story was submitted to Love What Matters by Carissa Crawford of Washington State. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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