Adjusting Sails: Heaviness and Sharing Grief 

Of course, there’s a physical heaviness; since my MS diagnosis in July 2024, there are times my body simply doesn’t cooperate with my goals. But there’s another meaning, perhaps even bigger, when I say things are ‘too heavy.’ Right now, life feels too heavy. 

My sister, Robin, turns 31 today, June 2nd. She’s finished her 30th year, and what a profoundly difficult one it was. She recently shared a dream, a replaying of the intense grief she’s carried over the past twelve months. What really struck me was her feeling that there’s no real space for her to share those feelings, that even those closest to her don’t truly know, understand, or have the capacity to help. And honestly, she’s right. And I feel terrible about that.

She’s a little sister and I love her so much, and I wish that I could just hug her and remove her grief. I am reminded of a memory from our childhood. She was probably five or six, and we were going downstairs, probably to play or something. Robin used to go down the stairs by just kind of sliding feet first while on her belly. All of the sudden, she just screamed and started crying. This was not normally part of her stair descent. I just remember feeling so confused (given her age, I was only about 11 or 12 myself).

Then I looked down and she was bleeding significantly from her foot, and when she saw it she started screaming. She was so loud. I remembered thinking the family would surely come running in soon to help us. They didn’t. Robin was just looking at me in distress, crocodile tears in her eyes and fear on her face. In that moment, I just bent down and picked her up. I told her we had to take care of it. As I carried her to the bathroom, Robin asked me to get mom instead. I can’t say it wasn’t tempting. I had no idea what to do. I put her up on the sink, and she continued to scream, cry, and bleed. I was again sure that Mom would be here soon by the sheer noise Robin was making. But still, it was just me and my little sister. I did my best to clean her foot, which was surprisingly dirty. Not just from the blood, but from the day or two of a barefoot five-year-old walking around on them.  

As I tried to clean and rinse off her foot, I did my best to calm her down by offering words of comfort. Mostly for her, but there was an element for me as well. It was hard for me to think with her making the level of noise she was. I don’t remember now how I decided to bandage her up, but I do remember she was bleeding a lot. I probably started with a Band-Aid or something on it, which wasn’t enough. But it’s what I knew to do on my own. My mom was in the garage getting some kind of decorations or something, and I knew I didn’t want to leave my sister alone.

When I called for my brother at first, he was annoyed. He was probably playing a video game or doing something fun, and he didn’t know what was going on. He must have either heard it in my voice, or came to see out of curiosity, but once he understood Robin was bleeding all over the bathroom, he took it seriously. He went and got Mom. 

By this time, Robin was settling down, and I realized that having her foot below her heart was not the best option for the bleeding to stop. I picked her up again, and brought her to the next room to lay down. It was my parents’ room. I put her on their bed and told her to lay down with her foot up. The bleeding still wasn’t stopping, so I wrapped it up in and put one of Dad’s socks on it because it was big enough to cover everything. As she was laying there on Mom and Dad‘s bed, I held her foot. I knew that was another way to stop bleeding.  

My family seemed to have injuries like this a lot. By the time I was 11, Robin and Mom were the only ones that hadn’t had stitches. Earlier that year, my dad slipped while he was carving and was concerned he may have cut his finger off (he even asked Robin to look around for it on the floor!). When that injury happened, Robin was the only other person home, and she was convinced she would have to drive Dad to the hospital… as a five-year-old. Luckily, I knew Mom was home. I just needed to keep holding Robin down until she got there. She obviously did not like that feeling, and kept asking me to stop, but I was a little proud of myself that I had helped my sister to stop crying. I didn’t know what I was doing, but still I was doing it! 

That all changed again when Mom got there, and Robin started crying again. I felt like all the “work” I did to try to get her to relax was useless, and my mom was going to feel like I did something wrong. Luckily, Mom‘s presence was comforting enough that my sister was able to calm down again pretty quickly. I explained what happened, and why she was wearing multiple of Dad’s socks, and why Aaron had asked her to come inside from the garage. In that moment, I remember feeling that I wasn’t able to do enough. I was sure Mom was going to be upset that I didn’t take better care of my sister and keep her safe. She had never made me feel that way before, so I don’t know why I thought it would happen today… but my guilt was just so heavy. Instead, my mom was very sweet and compassionate. She thanked me for what I did. My feelings of not being able to help enough were not echoed by her, nor by my brother Aaron. Actually, probably the opposite. Mom said I was helpful and that she appreciated me for caring for Robin. 

In the end, there really wasn’t anything I would have been able to do, and we needed to go to the doctor for stitches. The logic of “I was a kid, and there was nothing I could do,” or “it wasn’t my fault,” did nothing to take away my desire to change the situation for my sister. I didn’t like to see her hurting, and I wanted to take it away. It’s almost as if our logic and our emotions do not speak the same language.  

As an adult, and someone who makes a living helping others reframe their negative self-talk, there are a lot of takeaways I could have from this story. The dialectic (two opposite truths) of knowing there was nothing I could do to take Robin’s pain away, and the immense desire to absorb it for her is a relatable one. 

Today, on her birthday, as she looks through the last year of snapshots in her mind, I know a lot of them are heavy. It’s different to look at Robin now. Not only because she’s not five years old, but also because her pain does not show and bleed in the same way. It’s hidden. Although, I have noticed my desire to take it away for her still remains. I know, now more than ever, not only that I cannot take it away, but that ultimately it wouldn’t even help her.  

That feeling of wanting to fix, of feeling utterly helpless, has echoed throughout my life. It’s a familiar ache. Perhaps that’s why I’ve found such solace recently in the podcast ‘MeSsy.’ My sister-in-law Taryn recommended it, knowing it was helpful for people with MS to hear others share their journey. At the end of every episode, they pull a card with a quote or insight on it. I have noticed these have helped me think about the “now what?” concept, after I have noticed and validated my feelings.  

Yesterday, they pulled a card that felt aligned to exactly where I was in that moment. It said that we can’t change the wind. All we can do is adjust our sails to get to our destination. 

What an insightful perspective, something that I hope both Robin and I can resonate with right now. We were both given very challenging hurdles in the last year. Things that no one would ever ask for, we didn’t deserve, and that we will carry forever. We can’t change the wind, right? We can’t stop it or go back in time. We can’t pretend like it doesn’t exist or make it go away as much as we may want to. I think what I hope that she and I will be able to do, is adjust our sails and get to our destination, wherever that might be.  

As much as I want to take Robin’s pain away from her, I think talking with each other, allowing her to feel her grief, and to not feel so alone seems like a better option. It’s not possible to remove the grief from her past, or rewrite the story, and truthfully, I don’t think she would want that. My hope is that we can all learn from this realization in our personal lives. Although we will have a desire to take challenges and pain away from our loved ones, they (and ultimately we) may be better served sitting in the ash together.

As much as I want to take her pain away for her, I think talking with each other, allowing her to feel her grief, and to not feel so alone seems like a better option. It’s not possible to remove the grief from her past, or rewrite the story, and truthfully, I don’t think she would want that. My hope is that we can all learn from this realization in our personal lives. Although we will have a desire to take challenges and pain away from our loved ones, they (and ultimately we) may be better served sitting in the ash together.

< — In this picture, we were older… but not much. This is another example of me trying to care for her, although she did not like it.