|Who do I see?|
Over the past week or so I have had to spend a lot of time at the University of Minnesota Medical Center. I try to plan all of my appointments on one day since the facility is located in Minnesota, and we live in Wisconsin. Plus, my husband is my official chauffeur as well as personal care attendant. By combining appointments we minimize the amount of time he has to be away from work.
Since I am still quite weak and pain is a constant issue, he unloads me straight from the car to the wheel chair. Me, my purse, my water bottle and up until this past Wednesday, my lovely Foley catheter...or "pee-bag" as my endearing children call it.
Sometimes, if I am not too worn out, we have stopped at the grocery store to pick up a few things on the way home. On occasion, I have wanted to go in with him. There, he unloads me straight from the car to the motorized shopping cart. Me, my purse, my water bottle and my pee-bag. This was instantly noted on facebook by one of my daughter's friends - "Hey, saw your mom today at Walmart. She was driving the electric cart!"
This might all seem quite innocuous. In fact, if I were about sixteen and being the goofball that I was, it might actually be kind of fun. Kind of like wanting to drive a golf cart around on our town streets...or the lawnmower. Or it might even feel a little bit good, like when I got crutches for the first time. I couldn't get to school quick enough! Oh, the drama!
One of the most common issues among many people with chronic illness is the "invisibility" of it all. There are a host of sites out there that address the issue, like Invisible Illness Awareness, But You Don't Look Sick and Not All Disabilities Are Visible. To struggle daily with debilitating illness, which can at times be life threatening, and to hear "You LOOK GREAT", is most definitely a mixed bag. I remember reading a story on the issue about a year ago. The women writing had been suffering from Lupus for over fifteen years and had found little in regards to support from friends and family. And this women suffered from a very serious form of Lupus, Lupus Nephritis, in which the kidneys are damaged and eventually can lead to kidney failure. She had almost lost her battle twice before undergoing a kidney transplant. She wrote her story after experiencing a broken leg which required her to be in a wheelchair for four weeks prior to using crutches. The sad part of her story was the fact that she felt she had received more support over her broken leg than she had received in the accumulation of all fifteen years that she had suffered from Lupus. I won't get into all the details of her story, but I must note that she was a remarkably amazing women and used this knowledge to improve not only her own life situation, but the lives of many others.
I consider myself extremely blessed in regards to the support I get from my family and friends, as well as the vast network of friends I have made through One Moment One Life. Not once, in all the seconds of this relentless illness, have I ever felt lonely or longed for support that was not there. My heart aches for those that travel this road alone. I can not imagine it. But I have understood the complex balance of feeling so terribly sick, yet striving to remain positive and not become a burden for those that surround me. Don't get me wrong - I am in no way stating that I think we should ever "be" something that we are not. But those that struggle with this issue know the importance of taking care of our loved ones as well. I think of all the mothers, wives, sisters and daughters out there that force themselves to get up and showered each morning, struggling to stand up from the weakness that pulls them down, pressing make-up onto places that refuse to be covered - just so that we don't "look too sick" and cause another day of worry to those that love us. All the while, longing for just one day free from the pain.
So, I was surprised and a little bit confused by the emotional process that I went through when traveling the halls in a wheelchair the past few weeks. Having not "lacked" in need of support or understanding, I was not surprised at my sense of neutrality in that regard. In other words, it didn't "feel good" to "look sick". There was no vindication. But this is what did strike me - and has been with me ever since -
The eyes of those looking back at me.
I couldn't figure it out at first - what I was seeing or how it was affecting me. And maybe I'm still off base or a little impaired by my own situation. But this is how it felt
We are afraid of what we don't know. We are afraid it could be us.
I don't like riding in the wheel chair. I especially did not like the pee-bag and tube that I tried to hide in my beautiful home made bag that my daughter Amanda made for me. I know that the embarrassment that I held for myself affected my demeanor. I could feel it in my posture and the tone of my voice as I spoke to people. Once I realized what I was seeing, there was a change in me. I felt compassion for those that I was passing glances with. Like I no longer wanted to match hasty glance for hasty glance. I wanted to reflect the beauty that I was seeing. The human being I was seeing deserved a human being in return. And in those moments, I felt completely connected, on a level that is difficult for me to even explain.
I want to say that I don't know what changed. How I looked at the world or how the world looked at me? But I do. Because I believe that the world IS a reflection of ourselves. That Nature, and life in general, DOES wear the color of the Spirit. And in finding ourselves in others, we find compassion. And in finding compassion, we find ourselves.
What does your world look like to you? Who do you see reflected in the eyes of those you meet...
or in the mirror in front of which you stand?
I see you, and you are beautiful.