I wrote this post this afternoon while I was getting my infusion at the hospital...
At the moment I’m in the hospital, at the ambulatory infusion center, sitting sandwiched between two women who have Crohn’s. The girl to my right was, like me, medically retired from the Navy due to the severity of her illness. The girl to my left has a port, is skinny as hell, and won’t eat much because as soon as she puts anything in her mouth she has to go to the bathroom. Today there are no chemo patients in my room; just Crohn's patients hoping that remicade, the "miracle drug," will aid us in claiming our health back.
The girl with the port was pretty bitter, and I can emphathize with her. Actually, I feel awful for her. I feel awful for anybody who is sick with cancer or an incurable illness. I feel awful for a lot of things, but her presence really threw me into an array of emotions.
When she walked in it was as if a dark cloud filled the room with gloom. My chest filled with the emotion of great sadness. The presence of that emotion overtook my body and for a brief moment I felt as though a foreign invader had taken my body over and was trying to throw me back into a bout of self pity, sadness, hopelessness, and whatever deep dark emotion one has. Maybe she reminded me of how awful the disease was. Maybe it was because she shamelessly stared as three nurses were working on my arms, trying to get a vein.
It could have been the fact that my veins no longer work properly and decide to roll or harden every time the prick of a needle pushes through my skin. Or the fact that four veins blew each time the needle was pushed into them. Or maybe that at that moment I was surrounded by others, just like me, who deal with the roller coaster of being sick again and again. Not knowing what each day is going to hold. The frustration of not having control. The frustration of completely giving up control and hoping for the best.
It was something, but I didn't let it win. I felt these awful emotions for a few minutes, but fought them off. I reminded myself how far I've come the past year. How strong I've gotten on my bike over the past few months. How I've refused to accept the fact that because I am ill I have to show it. Most people that meet me and don't know me will never know I am ill. I don't display my sickness on my chest like a scarlet letter. And so, I've won. Yet again. Little victories. But the struggle isn't over. It will never be over until I no longer have to get treatments and can come off of the toxic meds.
But I'm not alone. Everybody comes to the ambulatory infusion center for the exact same reason. Whether it be cancer or chronic illness, we all have one thing in common. The hope that our individual treatments, as toxic as it may be, will help us get better and allow us to return to normal life.
I will never forget the first time I came for my infusion a little over a year ago. I’m not sure what I was expecting, but I wasn’t expecting what I saw. I was introduced to a completely different world. The world of people, doing what they can, to merely stay alive. It’s one thing to hear that cancer patients need chemo to stay alive, but it’s a completely different story to sit side by side them and see first hand the emotional roller coaster they and their families go through when they are getting their treatment. It's also not very comforting to sit next to other Crohn's patients, in the same situation as you, just trying to get by. It's not comforting because I don't like to be reminded of how common this virtually unspoken disease is. Crohn's patients suffer in silence because they are embarrassed to tell people that they, as adults, can no longer control their bowels when flaring.
It was that day that I saw life in a completely different light. I saw what was truly important in life. An epiphany if you will. I realized that for years I had taken my health for granted, and at the same time was thankful that I have a chronic illness and not an advanced form of cancer. I got angry at healthy people who still take their health for granted and don't know how good they've got it. I was scared, speechless, shocked, and was overcome by sadness. This was the "other" part of life that most don't speak about. The part of life that, when it hits you and takes your health hostage, forces you to look back and kick yourself in the ass for not taking that vacation because you thought you didn't have enough time, not spending more time with your family, for spending too much time at work, for not taking that risk in fear of failing, etc etc
As I walked through the bare white hallway and peeked in each room I saw faces of fright, defeat, optimism, strength, and hope. Each face had a different story, a different personal struggle, a different illness they were trying to kick.
When I got to my room and sat in my chair I looked to the left and saw a mother getting chemo. This was her life. This was real life. Getting healthy had to be my mission. Getting healthy mattered. For all of us. All of us making ourselves sick with our toxic treatments so we can ultimately get better. Sacrificing for the greater good. We ever so desperately want back the healthy life we once took for granted.
It was at that moment that I realized that the only way I was going to survive and beat this beast of a disease was by digging down into the deep depths of my soul and seeing me for who I was. I realized that I had to take my life back, in one way or another, so I can live long and healthy...
And here I am, a little over a year later, all bruised up with nine needle marks and four blown veins in both arms. Though today was incredibly painful, sad, and emotionally draining, I still refuse to give up. I've come a long way, and have a long way to go.