Figuring out how to tell my story is difficult. I tell abbreviated versions of it often - bullet points of 2 years summed up in 2 minutes. I glaze over the most difficult parts, and rush to the happy part. However, in order to honestly tell my story, I can’t do that.
In the summer of 2016, I was pretty similar to most working moms in their 30’s. My daughters were age one and four and never sat still for long. That summer, I noticed changes that I contributed to a stressful job situation. Headaches and migraines were becoming a daily occurrence, I was having a hard time focusing on much of anything, and I was growing increasingly tired.
Staying awake long enough to tuck my girls into bed was a struggle on most days and I caught myself dozing off when I shouldn’t. I couldn’t think of any mom who wasn’t tired, so I ignored it. By the first week of August, I had started to notice fuzziness in my left eye which prompted me to see an ophthalmologist. An MRI was scheduled for 3 weeks out.
A few days before the MRI, I woke up knowing that something was not right. I went through the motions of preparing for the day, dropping my girls off at daycare, and getting to work. Thoughts were flowing through my mind, but it was like I couldn’t hold on to them. I tried to stay calm and wait for whatever was happening to pass. I had recently left my job to be part of a start-up with some co-workers and to say it was a rough transition would be putting it mildly. I kept telling myself that it was just the stress getting to me.
Within hours, my left side started to go numb and I couldn’t remember basic words. I looked to co-workers (and friends) for help, but I couldn’t get the words out. Tears filled my eyes as I realized that something was wrong, and couldn’t be ignored. I remained calm on the surface as I drove myself the E.R. and called my husband on the way.
I walked into the E.R. in a daze. I tried to tell them that something was wrong, but the words that came out were jumbled, stuttered and slow. They asked me if I knew the date, and I couldn’t remember what month it was. Fearing a stroke, they immediately rushed me back for a brain scan. I had not had a stroke, but large tumor-like lesions were spotting my brain. I asked if they were sure, because surely this was all a huge mistake. I left my house that morning totally ignorant to the way my life was about to change.
I called my mom as soon as the doctor left the room and tried to explain what was happening through tears and jumbled speech. “Mom, I’m scared.” I remember saying right before my husband walked into the room. I’ll never forget the way his face seemed to age in front of me as the doctor explained to him what was happening.
He held my hand as we waited to be prepped for a lumbar puncture. As I curved my spine for the fluid to be extracted, I remember thinking “Did I hug the girls long enough this morning? Did they know how much I love them?” I kept their image in mind through every poke and prod.
The next week as a flurry of the extreme headache that accompanied the lumbar puncture. There were a plethora of I.V. steroids, tests, and scans - all peppered by brief visits from my girls. All the while, my husband and my immediate family never left my side. Medical terms and possible diagnoses were thrown around. I had spinal lesions that pointed towards Multiple Sclerosis, but nothing was a smoking gun and nothing quite fit.
My neurologist called two days after I was discharged and explained that my spinal fluid did not show signs of the Oligoclonal Bands that accompany M.S. He gently listed off the different conditions that could be causing my symptoms- they ranged from Toxoplasmosis to Metastatic Melanoma. I had a small spot of melanoma at the age of 19 and my maternal grandfather died from melanoma, so the possibility could not be ignored. He agreed that it was time to explore other options. He called the Mayo Clinic in Rochester, MN on my behalf to secure my appointment and send them my records.
We hung up the phone, I called my husband and my mom, then I distinctly remember curling into a ball in the bottom of my shower and crying these big gulping-screaming cries while the water hit my back. I was scared of course, but more than that I remember thinking, “Please God, let me love them longer.” The shower became my chosen place to cry over the next few months. I kept a brave face for everyone, but when I was alone, the fear crept in. I began to resent the very same body that carried my children and fell in love.
Arriving at Mayo was overwhelming and an experience that I will always be grateful for. Within 30 minutes of arriving, I was meeting with my new neurologist and performing cognitive tests. He was ready to tell me the diagnosis he had suspected before I even walked into the room.
I have Tumefactive Multiple Sclerosis. T.M.S is a very rare - often more severe - form of M.S. that has symptoms similar to a brain tumor. In some cases, it can be fatal. It is estimated that about 2,000 people worldwide have this particular form. I decided to take my chances with treatment. We started plasma transfers right away. They arranged for me to continue these treatments at home, with the plan to travel back to Mayo in 3 weeks to check the status of my lesions. I struggled to keep up with the rollercoaster of emotions. Suddenly, the plan I had for my life seemed to crumble. This disease is treatable but cannot currently be cured. I would live the rest of my life trying to keep this monster at bay. Of all the doctors I have seen to date, he is the only one who looked me in the eye and told me that it was okay to be scared.
Three weeks flew by. Little by little, I was giving up my independence. My in-laws coordinated with my husband to get me to my appointments for plasma transfers, which left me nauseous and tired. The PICC line in my chest made it hard for me to shower or wash my hair alone, so my husband started doing it for me. I was optimistic though, as I was seeing improvement to my speech.
The next trip to Mayo was more bad news. The lesions had continued to grow but decreased somewhat in density. My neurologist expressed how urgent it was for us to select a treatment and presented us with two options - both were forms of chemotherapy and both generally reserved for when all other treatments had failed. The damage to my optic nerve during the waiting period was permanent, and my left eye would not recover.
In mid-December that year, I noticed a change in the vision of my right eye. It started to look like I was watching the world through lace. After a trip to the ER, my worst fears were confirmed. In January of 2017, I woke up to the sound of my girls’ feet pattering on the wood floors as they ran to our bed for cuddles. I opened my eyes, but I could only see dark grey with slight shades of highlight and movement. Panic rose in my chest, I calmed my voice as I told Josh that I couldn’t see. I heard the catch in his breath. I felt my girls cuddling up in bed and I heard their little squeals and giggles. My eyes were open and searching, but everything remained dark. We laid together while we waited for my neurologist’s office to open and he called to coordinate my care locally.
Josh left the T.V. on for me every day while he went to work so that I could keep the time by listening to which show was playing in the background. My family prepared crockpot freezer meals for me, which I could manage to get into the crockpot and turn the knob 2 clicks to the appropriate setting.
In total, I spent 3 weeks almost completely blind. It seemed like a lifetime and it still does looking back on it. I became obsessive about committing to remembering every detail of my children’s sweet little faces and my husband’s handsome face. I replayed some of the happiest events in my life over and over like a movie in mind. I begged God to give me a second chance at the life I had before M.S. I’ll never fully be able to describe how internally heartbreaking it was to be surrounded by everyone I love the most, but not being able to see them.
Suddenly, the beauty in the simple tasks we take for granted- the bath times, the dance parties, bedtime stories, the way their eyes light up when they giggle, the freckles, the long eyelashes that rest on their cheeks as they sleep, the little dimples that only show up when our youngest really smiles her biggest smile or the pattern in Josh’s hazel eyes became the most important. I thought of all the milestones I might never get to see.
MS in any form is a monster and a thief, but it was also a gift to me. I have the unique pleasure of understanding how valuable every second of our lives actually is and what a gift it is to just be a mom, wife, daughter, sister and friend. My value lies with them and the tiny little impact I might be able to leave in this world. In most ways, my trial became my gift.
Maybe my only contribution will be to raise kind, open minded little humans and love my husband with everything that I have. I might be destined for greater things. That is the true beauty of this life. Every day and every experience is a chance at a new chapter.
I don’t know when my treatment will stop working or what the next attack holds for me, but I know that I am not wasting my life waiting. My daily prayer has become “Lord, lead me to it,” because I don’t know or understand his path for me, I just want to find the right one and I know I can get through it.
I am not the same person I was 3 years ago. T.M.S., blindness, and the fear of leaving this earth to early have changed me to my core. I learned to be more gracious with myself and with others. I had to essentiality grieve the old me and my old life in order to move on. I learned a lesson in humility and the honor that comes with accepting help from others. I’m careful to treat others with gentleness, because every single one of us has our own fight that we are fighting. I don’t doubt my faith. I enjoy experiences much more than material items.
I rest when I get overwhelmed or discouraged, but I have never given up. I have always kept going. There were days when showering was my only accomplishment. I have to work harder now to learn or understand new concepts. Numbers are still hard for me, but I’ve persisted. I never let my family leave me without knowing they are loved by me beyond measure. I’ve had to move on from the things that caused me to focus on my insecurities and embrace my strengths. I’ve become uncompromising that I am a mom and a wife first and everything else comes after that.
Living with M.S. has gotten easier. I’ve learned to cope with clear vision in one eye only. I push through the neuropathy and fatigue. I don’t panic when I see spots in my vision that accompany the migraines. I no longer wake up scared that today will be the day that it comes back and steals the rest of my vision or worse.
People often say to me “You don’t look sick”, and I know they mean well, but I want them to remember how many illnesses are fought internally. I often feel as though I have to validate why sometimes I have to be choosy about where I spend my energy. M.S. is not one-size-fits-all and it looks different in each case. This is not who I am. It is not a tragedy. This is just part of my story.
I realize that not every story has a happy ending and how fortunate I am. I had my husband to support me and help me carry my burden. I had a village praying for me and even coming to my house to pray with me. I had the resources to seek a second opinion. I had the drive to fight my insurance company and refuse to let them choose my outcome. I had family to lend a hand and stand by me every step of the way and parents that drove me all the way to Minnesota so Josh could stay home with our kids. I have a disease that has not robbed my daughters of their mother.
My advice to anyone searching for a diagnosis or coping with a new one is this- persist. Feel the emotions. Be scared, get sad or angry and scream if you need to, but try your hardest not to live there. Live in the small victories and the love that is found in the little details that we overlook in our day to day lives. Accept help when you need it and see the beauty in the acts of service. Accept the love you’re given and spread it every chance you get. Keep going.