On August 15, 2016 my family changed forever. It has been seven years since we got the news. My baby sister, my only sister, Krystal, was diagnosed with multiple sclerosis. It seems like it was only yesterday. I was sitting on the couch in Alabama, where I lived at the time; waiting for the phone call. I’m nervous but hopeful that the news will be good. At 6:27pm the call comes in. Ring! Ring! It’s a Facetime call. My heart is beating hard and fast. I pick up the phone and try to put on my best happy face or my not so worried look. It’s my sister, mom and all of my family back home in Indianapolis. I don’t want her to think I’m worried. She says hey, “Hey Linda”, a nickname she has for me and she’s smiling. I’m thinking to myself yeah this is going to be good news. Then the words come out of her mouth, that no one in the family wanted to hear. She says “I have MS”, my heart drops and it feels like my stomach is in my throat. I’m trying to hold back my tears, because she is not crying. I’m thinking I have to be strong for her and her two girls, Niya and Nena, my nieces. I can hear my sister talking, but at that moment I couldn’t hear her, if that makes any sense. All I kept hearing is “I have MS”. It felt like it was on repeat.
My sister grabs my attention and I come back to the phone. She’s smiling and I hear her saying, “It’s ok, I’m going to be ok, we are going to be ok and get through this.” I agree with her and say yes, we will. She says “…well I’m going to get off of here now and we will talk more tomorrow.” We tell each other that we love one another and the call ends. This was one of the most heart breaking, saddest days of my life. My sister just called and said she has MS, and I don’t even know what that really means. I mean I’ve seen movies and it’s always a person in a hospital bed or wheelchair. And I’m not even there to comfort her, hug her and tell her she’s going to be ok. My mind is racing. ‘Is she going to be ok? How long do we have with her?’ All of the scary, terrible things you could think of are taking up residence in my mind. I’m terrified for my baby sister, my only sister. I’ve never met anyone with MS. What should we expect? I cried for most of the night and the next day.
I don’t even know what to say to her, so I don’t call for a while. I don’t want her to see me crying, because that is all I seem to do when I think of my baby sister. I finally get the courage to call and she picks up and she’s standing in her kitchen. She’s making dinner for her family. But I can tell something is different. She seems like what I would say, is off balance. This is my first time seeing it. Her legs are wobbly and she is making dinner for her family. Wow she is amazing, so strong. Not letting this define her. I’m so proud of her. I’m thinking to myself, what can I do, what do I need to do to help her? After all, I’m the big sister and she should be able to depend on me. I got it! I’m going to go see her and hug her and my family. So, we make plans to surprise our mother with my visit. We make the arrangements and I finally arrive. My sister picks me up from the airport with my nieces. I was so excited to see her, my mom and everyone. We head out to my aunt’s house to surprise my mom. Upon arriving and us all getting out of the car, this is my first time seeing my sister physically since she has been diagnosed with this monster.
She has a cane that she’s using to help her walk. I just want to pick her up and carry her on my back. She leads the way in and we surprise mom. My mom (Pamela) is happy to see me; everyone is, and I’m happy to see them. We visited everyone the first couple of days. Then I went and stayed at my sister’s house, so we can have some sister time. We are holding hands while she drives us to her home. We stay up for a while laughing, talking and eventually I fall asleep. When I wake up, there she is sitting right next to me. I ask her is she ok, and of course her favorite words then and now “I’m fine”. We make plans to go grocery shopping with her bestie (Tanisha Boo-Boo). She knows that it’s my favorite shopping spot. We’re at the store standing by the meat counter. My sister stands up from the store’s riding scooter. It was like a flash; it happened so fast, so quick. She loses her balance and falls. I couldn’t catch her. Some people may have been embarrassed, but I felt like a failure. I couldn’t catch her and break her fall. I didn’t protect her. She gets up like nothing has happened saying she’s alright, she’s ok.
When that happened that was my first time being around her falling. I want to be able to protect her. So, I start hovering over every move she made. And eventually she tells me to stop. At first, it made me angry, because I’m thinking to myself, she needs me to help her. And I’m angry because she won’t let me help her. Then it dawned on me, I never asked her if she needed my help. I just assumed she did. Because in my mind she’s sick and she can’t do this on her own. But then I realized that she needed that independence. She needed to be in control of her life and how she did things. It was a little hurtful at first. I guess because I wanted her to need me. And she explained to me that she does need me. She needs me for support and understanding and to know that yes, she has MS, but it does not define her. It may be days that she is a little more tired than usual, a bit slower, or she may forget something that may be important and that’s ok. Because the MS monster snatches all 3 of those things when it wants to. I realized that the help that I give her should be on her terms, her wants and needs. Not mine. I want her to do all the things that she is able to do for as long as she’s able to. I never want her to feel like she’s less than or that she’s a burden.
I want to be honest with her. That yes, sometimes, seven years later, I lay in my bed at night and I think about the day in the grocery store and I cry. I cry now because I never knew she could be so strong. The way she is handling this monster. The way that she is a great mother to her children and gives them 110% even on her not so good days. That she’s a great friend to so many and tries to help anyone with anything she can. They say God gives some of his toughest battles to his strongest soldiers. I can never say that I don’t know anyone with MS anymore, because I have a sister with MS. I can honestly say I never even looked up what MS was, until it came for my family. I don’t know about others, but it sure has taught me a lot. I know when a lot of people look at my sister; especially if she’s just sitting down, you wouldn’t think anything is wrong. Because as some would say she doesn’t look sick. But really, what does sick look like? I know when I’ve showed a picture of her and I, and someone says that stupid phrase, I immediately get upset and on the defensive side.
I don’t want anyone to ever make her feel like she doesn’t belong or she shouldn’t be included just because sick doesn’t look like what they think it should. After I realized that she is stronger than what I gave her credit for, I understood what my role is. That is to research for myself about the disease, understand and not be ignorant to think that everyone who has MS is going to be the same. To be an advocate for my little sister when she needs me to be. I don’t know where MS is going to take my family. All I know is I’m going to be in her corner as long as God will allow me to be. I will continue to let her know and to show her that I love her so much. We always think we have time. My sister and I know better than anyone, that life can change in a nanosecond. It did for my family in the biggest way but we won’t let it define US.
Signed,
Proud Sister of an MS Warrior
