My Sister has tumors... Now what?

Marisa Barnes, my younger sister, is a smart, beautiful, kind-hearted young woman who volunteers in the nursery at church and loves spending time with family and friends by playing board games or video games. She also has tumors. When she was 19 years old, she was diagnosed with Neurofibromatosis Type II (NF2). NF2 is “a disorder characterized by the growth of non cancerous tumors in the nervous system” (for more information, click here). Today she turns 25 years old, and our bond continues to grow even though we are miles apart. I have watched her struggle and grow these past 6 years, wishing there was more that I can do for her, but being incredibly proud of the woman she has become. These 6 years, not only affected her, but our family and her close friends as well. I decided to start a series on the major parts of this journey from my point of view. Maybe it’ll help other caregivers know they’re not alone or help them see how they can be better caregivers. We have to learn to care for ourselves and better ourselves, so we can be there for the person who is sick in our lives. This one’s for you Marisa, thank you for being patient with me throughout the years as I can never fully understand what you go through. I’m growing and learning to be a better person because of you.

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Fall 2013 was the beginning of my senior year of college at Indiana Wesleyan University, and Marisa’s sophomore year. I always thought it was cool having my younger sister at the same university as me, and I loved mentoring her by helping her study and showing her around. Unfortunately, her first year did not go so well and she was put on academic probation for her sophomore year. We always knew she was half deaf, and struggled with hearing, but over the summer we discovered she had major hearing loss.The doctor found she only had about 25% of hearing in her left ear, and none in her right due to a tumor. The doctor believed the tumor to be harmless, and they would discuss a plan at her follow-up appointment in October to have surgery to remove it. He attributed her doing poorly in school to the fact she couldn’t hear, and because she has never been diagnosed as hard of hearing, and she is shy, she never spoke up about it. How was she supposed to learn? I decided I was going to help her out as much as possible, she was not flunking out of school because she couldn’t hear. We had weekly coffee dates to discuss classes, boys, and Jesus. I made sure she sent out an email to all her professors explaining she was hard of hearing, as well as finding someone to help her take notes during class. This semester was going to be the best one for the both of us. 

I switched majors my second semester of my junior year. In case you were thinking the same thing- DON’T. At least, don’t try to graduate “on time” (note the quotes because graduating college in 4 years is a social construct we must do away with, but that’s another story for another time). I took only major related classes for my last three semesters and they were loaded with huge projects. My senior year I was doing an internship, which was 15 hours a week traveling two hours round trip. I had practicum, which I needed 30 hours outside of classwork a semester, on top of other heavy writing and design classes. Plus, I needed to save money for after college, so I got a job at the nursing home down the street where I worked night shift on the weekends. With the intensity of the semester, and uncertainty after college looming over me, focusing on Marisa helped me feel less stressed and overwhelmed with my own problems. Until, our world was turned upside down.

October came by way too quickly and Marisa went to the University of Michigan for a cat scan of her brain. They believed she would have surgery planned around her school schedule and then move on with life. Spoiler alert: That was not the case. My mom returned to school with Marisa and asked if she could come see my townhouse. I welcomed her inside and we sat down on my loyal hot pink futon I bought right before leaving for college. She then explained to me that Marisa was diagnosed with Neurofibromatosis Type II. She said, Marisa has tumors, about 8 to 10 of them in her brain and down her spine. The tumors are noncancerous (thank God), but are entwined with her nerves causing permanent nerve damage. She needed to drop out of school, because her first surgery would be  in December and between the pre-ops and recovery, she would not have time for schoolwork. My heart sunk. I watched with unbelief as they packed up Marisa’s room, withdrew her from classes, and moved back to Michigan that day. 

What now? 

How does one go about processing that? No more weekly coffee dates, no more asking her how her school is, and no more little sister texting me to hang out for the 100th time. I processed it in the only way I was capable of at the time when everything else in my life was weighing down on me.  I pretended it wasn’t happening and it wasn’t a big deal… for a few weeks, that is. 

It all came crashing down on me on a Sunday. I remember waking up and feeling numb. I had to get dressed and go to church, but I didn’t want to move. I finally crawled out of bed in a zombie mode, got dressed and went to church anyway. I kept repeating to myself, “It’s fine. I’m fine. Everything is fine”. We were worshiping, singing “Never Let Go” by the David Crowder Band, as the tears started to stream down my face. I dug my nails into the palms of my hands. The Hoover Dam like structure I had installed in my mind blocking all my emotions had started to crumble. As I started to struggle breathing, I quickly walked to the bathroom, locked myself in a stall, plopped on the toilet, as if it were only a chair, and gave in to the waves of feeling crashing against my chest allowing the river of tears to flow out of my eyes. I could not stop crying. I felt like I would never stop crying. I thought to myself, “I’m going to die here in the bathroom stall, crying”. All hope was gone and I couldn’t handle it. 

Luckily my friend Crystal followed me out shortly after to check in on me. I opened the stall for her and she came in, crouched in front of me and held my hand. I blurted out all of the stresses and vented all my worries. She sat there and listened, encouraging me while validating my feelings. She prayed for me and I eventually stopped crying. I decided something had to change.

The rest of the semester,  I spent a lot of time in the prayer chapel, and started speaking to a school counselor. I struggled with feeling guilty about being emotional, after all, Marisa was the one with tumors. I worked through that with the counselor and close friends who were willing to listen. Her first surgery in December went smoothly and she was out of the hospital by the time I was finished with finals. Those first few months of my sister being diagnosed with NF2 started me on a journey of learning many important lessons in life. Those few months were the worst, but it gets easier and I started noticing all the little lessons and growth through each phase of this trial. Here is what I took away from this first trial:

1. Don’t take the people you love for granted. Marisa and I are very close, but there are times I wanted to spend time with my friends more than her. I should have spent more time with her. A 30 minute coffee each week wasn’t good enough. I regret not spending much time with my sisters (I also have a wonderful older sister, Sam) when I lived near them. I wish I would’ve spent more time growing those sister relationships. Now, I’m trying to reach out more and have more conversations, but life gets in the way. I love my relationship with my sisters, but it could’ve been stronger had I got out of my room and went and played a game with Marisa. You don’t realize what you have until a threat looms over, tempting to take it away. 

2. Feelings are valid. I found myself saying, “Well, I’m not the one with tumors, I shouldn’t be so upset”. That is negative talk that wouldn’t just will my feelings away. It’s okay that I was hurting and overwhelmed. Crystal showed me that by just being there for me. Be there for your friends. You don’t need to fix them every time they have a problem. Sometimes, the best solution is just being there. If I would’ve acknowledge my feelings in the first place, I wouldn’t have exploded, and I probably would have done better in school. 

3. Learn to seek help. You can not do it all by yourself. Personally, I have found seeking peace in Jesus helps me the most. I, also, realize that God equips therapists to help us when we have too much of a burden to bear. They will share the load with you and help you understand the feelings your feeling. Invest in really good friends. The kind that will allow you to vent and care for you. The kind of friends that will also open up to you and allow you to care for them when needed. Friendship is all about give and take. Not just give, and not just take. I had the most incredible friends and family, and I could brag on them all day long. I thank God for them every single day. 

There are many lessons I’ve learned while walking this journey by my sister’s side. I will probably continue this series as long as I am writing blogs, posting excerpts of our lives and what I learned from that time. If you have NF2, I hope you are encouraged that you are not alone and a lot of what you are feeling is normal. There is a bright side, and there is a light at the end of the tunnel. If you have a loved one with NF2, I hope you also are encouraged. You might make a lot of mistakes and hurt the person you love, but we’re human and we grow from those mistakes and can make changes. If you need any more encouragement or more information feel free to comment or message me. 

XOXO,

KCB