Jenga is a game played in which a tower of blocks placed three by three is the starting point. The object of the game is to remove blocks from the lower section and place it on top without toppling the tower. Imagine that as adults we are the beginning tower of a Jenga game. The blocks are our skills, our talents, our education, our family, our friends, our confidence, our security, our home…all the tools and assets we have that enable us to successfully navigate the world. There is no arguing that life in general can knock any of those blocks off balance, but in most cases you can solve the issue and smooth that block right back into place, returning you to your nice solid tower. With chronic illness, however, this righting of the world over time doesn’t tend to happen. What I lose to chronic illness is not only truly altered, but the world in turn puts that block on top of my once strong tower as problem. For instance, due to my chronic illness I tend to miss work. This takes the block that was my job and once an asset and places it on top as worry over keeping my job, feelings of failure for not being able to work how I know I could…if I weren’t sick. This leaves a hole in my infrastructure as well as more weight to bear. It doesn’t stop there, far from it, the sicker I get the more my tower starts looking like ruins from the 1906 San Francisco earthquake.
Some days life is just like that.
I can’t work, so I go on medical leave or disability, which severely drops my income. Taking my financial security block out of strengths and placing it on top as I struggle to not only pay my normal living expenses, but also a pile of medical bills that would strain my budget even with normal pay. The policy of disability and insurance is to deny everything and hope you give up and go away so they don’t have to spend the money. So the sticky fingers of those who are supposed to be helping me survive this ordeal are instead taking every opportunity to leave me high and dry removing the brick that was security and placing it on top as stress, anxiety, frustration, anger, and depression as I attempt to navigate my way through the red tape of this insane bureaucracy. Fighting these institutions for the support to which I am entitled is a full time job, it requires attention to detail, I must know names, dates, tests, and compile a file on my own medical history. I have to pull all of this into a clear and definitive narrative to “prove” that I can’t work.
Call an ambulance, I think I have a fatal paper cut.
Sounds pretty miserable, right? Like a lot of work and frustration? Well, there is one thing that has probably slipped your mind. I’m already so ill that I can’t work, so all these extra struggles are completely overwhelming, but they still have to be done. It is a devastating process that pulls you apart piece by piece, but the really scary thing? This is chronic illness, there is no cure, just variations of worse and better days. That thought always makes me want to go hide under the covers and hope the monster doesn’t notice me.
Is he gone yet?
But wait, at least you have your family and friends. They will support you, help you, do whatever they can. Well, the truth is that friends and family is the trickiest block to navigate. In the beginning everyone is there for me. They have my back, they want to help, and they are my cheerleaders. However, this is chronic illness, meaning it will go on indefinitely. Over time things tend to change. We are human beings and by nature we are focused on how anything affects us. I can’t even count how many times, when someone dies, the first thing out of the loved ones mouth is “What am *I* going to do now?” Now I’m not criticizing this instinct, it is just human nature. I guess I just wasn’t as aware of this side of our nature and was quite shocked when I was harassed by friends and family about how I wasn’t as social, how I changed, how I wasn’t fun anymore, and in many cases people were insulted that I didn’t come around anymore. Many were convinced they had done something or I hated them and nothing I said could alter this perception. Even though we shared the same world our experience was so different that the relationships dissolved.
Naturally I had expected understanding and compassion from these amazing people I had chosen to have in my life. What I didn’t realize is that our realities had diverged so drastically that neither side had a frame of reference for the other’s lifestyle. They had no idea what it was like to struggle with pain and illness every minute of their lives. My world had effectively been reduced to simply surviving. They, on the other hand, still lived in a world where traffic was an actual problem, or the coffee they spilled on their new shirt was enough to ruin a day or even a week. We were in drastically different worlds and there was no bridge for us to meet in the middle. We just couldn’t understand one another. There was a very small group that did their best to understand and when they didn’t understand they would just sympathize. Chronic illness is a lonely place, knowing that only someone going through the same would truly understand and I wouldn’t wish that on my worst enemy. Now I see that it is a group effort to maintain connections requiring a lot of understanding and patience on both sides. Though they might not fully understand the world through my eyes, they can understand me. Perhaps that particular block will find its way back to its rightful place.