Thanks so much for coming back to my blog after reading the Spoon Theory. Wasn’t it great?
So why did I send you there? What is on my mind? What the heck am I doing?
I am not sure I can totally answer that. I have been “led” in the last week or so to think and talk about this topic. It seems most everyone I have talked to in the last week is struggling with one side or another of this issue. Either they are taking care of a friend or family member, or they are struggling with their own illness. They are all baffled as to what to do about_______ (fill in the blank with any number of issues). And they ask me. And I tell them what I think. And what I think is based on my many experiences of living both sides of the theory. So I thought I would blog about it. Some of their experiences I will share and some I won’t. But I will share many of mine along the way. I don’t know how long I will do this… a few days… maybe a week. Depends on how many spoons I have!
So let me start with just some general issues for those of us who have limited spoons.
So many times in the past 18 years, people have asked me how I cope with a chronic illness. It has not been something that is easy to explain. At least not so that healthy people “get it”. That is why I like the Spoon Theory so well. It puts the message across quickly, succinctly and powerfully. The analogy works.
I used to tell people (much like Vicki does, as she commented in my prior post) that I have 3 options:
1. shoot myself
2. be miserable and make everyone else around me miserable
3. get on with life, appreciate what I CAN do, and find what is my “new normal”.
I choose door number 3, thank you very much. Not that the other options don’t tempt me at times. They have. Sometimes they still do. But mostly, I choose to enjoy every ability I own……those that were lost and are now regained; those that I never had until getting MS; those that I never lost and continue to enjoy. Each one is a gift to me.
When we think of getting a gift, we usually are happy to have it… happy to take care of, and treasure it. But when it is our health, and particularly when it is our SELF….. we don’t treasure it. We don’t take care of it. Until it is gone. Or damaged in some way. Even when damaged temporarily.. a broken arm, a simple surgery… those things don’t make us really treasure the gift of self. The gift of health. We get on with life without much thought of what it would be like if those changes were permanent, rather than temporary. We forget too soon. Why is that? Are we just THAT lazy and complacent. Or… are we that selfish? (selfishness is a whole topic I will address later)
By thinking of my abilities as gifts, something to cherish….. it is easier for me to stay positive, and deal with the challenges that present themselves daily. It can be a roller coaster, but we do what we have to do to survive. I just choose to do it the way that works best for me and my body. Is that selfish? There is a question for you to think about. My friend is struggling with this very issue.
For sure, we don’t think of how others feel when they are incapacited or have chronic, serious health problems. The healthy general public sees the disabled as invisible.
Let me tell you a story…
When in a wheelchair 17 years ago, my son took me to a large Dept. store. The clothes racks were very close together, and it was difficult to get down an aisle or between racks to see the dresses I wanted to try on. I finally chose several, and Neil pushed me to the dressing room. I asked for a chair or bench in the dressing room. I needed to sit to change clothes. They didn’t have one. I asked for the Manager. He also told me they didn’t have a chair. I asked if he had an office. Yes. Good, then get me YOUR chair so I can sit and try these clothes on, and spend money in YOUR store. No, can’t do that. Fine, give me the president of the company’s name and phone number. Neil and I left; I went home and called the president. They promised that the problem would be fixed. They sent me a gift certificate. I returned to try on dresses several weeks later. STILL NO CHAIR in the dressing room. How could I use that gift certificate? Hell, why would I want to use it? I never did. I still boycott the store. And most my friends in Charlotte, NC do too!
The real problem?? I was invisible. I didn’t count. I didn’t matter.
And I bet you are guilty too. We all are. You see someone me in a wheelchair, or with a cane, or walker. You see someone different, bandaged, gimpy…. Whatever. You look the other way. Almost always. If I look at you, you look the other way. Why? Because you don’t know what to say or do? WE ARE PEOPLE TOO. We want you to see us. We want to be heard. We want to count. We want to matter. We want visibibility. I WANT what you have….. and will never have. Because I don’t have enough spoons.
When you ignore me….. when you look at me with those hang dog eyes with pity….. I want to shake my fist at you, cuss you, tell you just because I fricken have only 3 spoons left for the day doesn’t me I don’t have feelings! It doesn’t mean I don’t have a brain. Hey! Look at me when I’m talking to you! Yeah YOU! I’m talking to you. Quit ignoring me. I count in this world. But I don’t do any of that. Frankly, I don’t have the spoons to do so.
Next time you look at me, at least give me the courtesy of a smile. Or a nod of your head. Acknowledge my presence and existence. Make me feel like I matter. It won’t cost you anything. And it will make both of us feel good.
————– working on chapter 2——————–
feel free to leave a comment, question or whatever. discussion is a good thing, no?
Another postcard arrived this week.
This one is from Shelly, whose May birthstone is an Emerald. I will quote her: “I will never forget being a young girl and listening to The Wizard of Oz on records. I loved the part about the Emerald City. Imagine that, a city just for me…and all the other people with May birthdays. I was so sad when I realized it was just the green glasses.”
This is my new favorite card!