Remember going to parties and playing the game Limbo? Music playing in the background, 2 people each holding an end of a pole which they then hold up very high and eventually keep lowering as people pass under. I was never very good at that game – not very flexible.
But now, at the ripe old age of 47, I have become a semi-pro at the game. Well, the Cancer version of LIMBO that is. What – you aren’t familiar with that version. Then you may not be in the cancer world. This is my second time of playing Cancer LIMBO and this time is much harder than the first round.
You would think that the game gets easier the more times you play; but for me this is not the case. I think most people would describe me as an extrovert, fun, an slightly above average risk taker, athletic, (was) healthy, and pretty easy going. Except in this situation. I suck at LIMBO! LIMBO doesn’t let me move forward in a way that is comfortable for me. LIMBO keeps me in a constant state of wonder, worry and concern. I wonder when the medicine won’t work anymore, I worry if I am using this additional given time doing what I really want to be doing and with the people I want to be doing it with. And concern for my loved ones as to how this affects them.
No one is to blame for this constant state of LIMBO that I am experiencing. It was a question that I and my husband could not help to not ask; which was “how long does she have with medication and how long without?” Knowing that I have beaten the educated guess makes me feel extremely lucky and fortunate but now every time I have a set back I immediately think that this must be the beginning of the end. Interesting thoughts enter my mind and the game of LIMBO begins again. All of a sudden I live in a world of “should I do this now because time is almost up or should I do that?” Then I go see my doctor and it turns out to be constipation from the pain meds, or dehydration, and so on. And then my Caregiver/husband is left to deal with the aftermath of the game. “Why is he/she not understanding why I want things a certain way? Why is it a problem for me to travel right now? Let me get another dog if it will make me feel better! I mean I could die tomorrow!! No one really knows so I am stuck in this game of LIMBO. The other difference with the Cancer version is that I am playing alone. I raise and lower the bar when I choose to and a lot of the time the bar is changing at unknown times and at a crazy pace. Sometimes I don’t even notice how intense the game has become until my Caregiver points out that my behavior has become unpredictable and confusing.
When in LIMBO, I still go about my day as I usually do, but at times it seems that those around me aren’t always sure how to treat me. My husband/Caregiver wants to treat me as his wife and I want that too but I also want him to handle me with kid gloves. My friends don’t want to ask or don’t want to upset me so they say nothing. Or they find out what is going on with me through my husband but he doesn’t always tell me when people inquire and then I wonder if people even remember me and my situation. This can make me feel so very alone and with no one to talk to about my feelings. Or when I ask friends what is going on with them they say they don’t want to burden me with their problems. They explain that their problems are so minute in comparison and they don’t want to stress me out. Hello, people, I am still here!! I am your friend and that is what friends do. They listen to each others problems and do what they can to make them feel better. I believe it is human nature to want to help. listen. be there for those that you care about. I want to be able to do for my friends and family as they have and continued to do for me. Please don’t shut me out. I’m still here. This is what I mean about being in LIMBO. Who am I now. What is it that I can do with myself everyday to make myself feel like I am giving back and taking care of others.
I conclude with this: “Sometimes you don’t need to walk in someone else’s shoes to know how they might feel. Sometimes, the best thing you can do is just sit beside them and let them know you care.” Octavia Spencer, The Red Band Society.