Stories of Loss: “You never really know how sweet life is until you have tasted how bitter it can be”

(Ashley, 23, Philadelphia)

In the summer before my last semester at college, I learned my mom had been diagnosed with a rare cancer called leiomyosarcoma. She had stage three cancer and at the time was told she only had a few more months. I still clearly remember every detail about the moment by mom told me. I remember everything we were wearing, the smells of the room, and the look on my mom’s face. I remember telling me that she wanted me to rent the house instead of selling it and she began spewing a wealth of advice on raising kids and marriage that was years before its time. After telling me and crying we went to the beach and tried to pretend like everything was fine and that life was as normal as it had been before we knew. I was only home for a week since I had been in school all summer and was going back in the fall. Right before I left for home I had sat down with my adviser and I recall telling her that I wanted some independence from my mom and that I wanted to become more of adult. I wanted my mom to give me some space. Well here it was, all the space I could ever want.

I went back to school and I didn’t know what to do. I wanted everything to be normal and so I didn’t talk about it with anyone. I had only told my two best friends but I soon regretted that. It’s like, have you ever been to a haunted house. When you’re in there you know that at every twist and turn that something bad is going to happen. However you cannot prepare for it and its really unclear as to when its going to end. That’s somewhat what its like to have someone in your life who has a terminal illness. My mom’s treatments made her sick fast. She lost her hair, she smelled like medicine, she had all sort of injection marks on her arms and she kept talking to me about being more responsible and what to do when she died. I felt like I had already lost my mom and she had been replaced with this woman who was dying, found peace with it and had transitioned into a new way of living. I however was stuck. Going back to school was the only way to fully escape from all of the pain and confusion surrounding my moms cancer and I didn’t want to be reminded of it. Of course my friends always wanted to know how she was doing, how I was doing and how everything was doing. I couldn’t see their concern, instead it felt like I was in that haunted house and while I was trying to move through my life as normally as possible, I kept being met by this horrible constant reminders that my life was not normal. My life was “how is your mother doing?” “are you ok?” “why are you not moving home?” “whats going on?” We eventually stopped talking and I’m sure I left them bewildered and confused and hurt. However when dealing with someone who is grieving, while there is no right answer, the best way to move forward with someone is to move along with them and be patient and lose the idea that because you want to help you are being helpful. I didn’t want to avoid my mom’s cancer but I did want to just be a 20 something with nothing to worry about but my outfit and what my friends are doing tonight.

It has been three years since my mom was first diagnosed. Since then she has been through some serious ups and downs and in each one I have experienced the cycle of grief. There is something known as anticipatory grief which you can read about here http://www.americanhospice.org/index.php?option=com_content&task=view&id=80&Itemid=8. Basically its when you experience grief before someone dies or as they say “A sudden death hits you like an explosion, Myers explains, and sends you into shock, whereas a slow decline “arrives more like a glacier, massive and unstoppable, grinding you down.” Dealing with the symptoms of anticipatory grief gets harder with each passing day.” Its incredibly exhausting and isolating. I haven’t gotten any better at it. I am a logical person and I do not deal with emotions very well. I cannot always communicate about my feelings and emotions but I can deal with them and I have become really good at moving through the emotions that surface when my mom goes through rough patches. I don’t like to talk about it, I don’t like to think about it and I really attempt to compartmentalize my feelings and live my life as normally as possible. This is because it is one of the most painful things I have ever experienced because I love my mom and I have no idea how to visualize my life without her. I also just want to enjoy the time we have together and I can’t do that if I am focused on her dying. This past year has been one of the worst for my mom. On Memorial Day weekend she fell and broke her hip. I was responsible for calling doctors and checking on her progress and thinking about real adult things like bills and the house and all of that. I had just been entertaining the thought of getting a job I really enjoyed in a different state but its more important for to be near my mom, even if it means putting my dreams on hold. I am genuinely happy and so is my mom. Its because of my mom that I am the person that I am. I want my mom to be at my wedding and to be a grandmother and I want her to be there because there is so much I still don’t know. I don’t want her to be this sick and I don’t feel like I’m ready for this but here I am. I am very blessed that I have the family I do and the mom I do and I know that things will be ok. When my mom does die I will be prepared and I will not be alone.

This past year I have found some amazing friends who have helped me along and I don’t think its always wise to grieve an isolation. Two of my friends had sick parents or older family members and instinctively knew the range of emotions I was experiencing. It was a blessing and a lifesaver. I am a pretty private person either way but I usually don’t tell someone about my mom unless I believe them to be a really caring empathic person who is pretty strong on their own and won’t overwhelm me with additional emotions. I couldn’t have made it through these past two years without people who were willing to be a little more than a friend and yet still allow me to remain as normal as possible. I reconnected with one of my friends from the first year of my moms diagnoses. I missed her in my life and although things are not the same, over the years we have found a way to be there for each other again. This isn’t possible for everyone, if anything, this process with my mom has shown me some people’s character and I’ve been glad that I haven’t had to depend on them emotionally. No one is perfect and everything about this process is hard and uncomfortable. Don’t always blame yourself for not being able to know how to be there for someone as they grieve, do your best , be patient with yourself and trust the process.

I used to volunteer at a camp for kids with terminal illness. I learned so much from them and from my mother too. They taught me that cancer is our enemy, it is our demon but it is also our teacher. And I have learned from it that you can never really know how sweet life is until you have tasted how bitter it can be. I have experienced that and I don’t look at going home to be with my mom as waiting for her to die but experiencing the sweetness of life and the time we have together. I know that sometimes when you are trying to help someone grieve you focus on the death and the pain and the difficult emotions but there is so much beauty wrapped up in cancer, death and grieving that should not be missed. If anything help your friend see that, when they’re ready and willing.

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