SPOONS: CHAPTER 1

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.

 

COPING:

 

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.

 

 

INVISIBILITY:

 

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.

hpim1835.jpg

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!

 

Advertisements

12 Comments (+add yours?)

  1. Jan
    Apr 04, 2008 @ 14:20:23

    You know Gayle… someone we both know must need to hear this because it has really been on my mind too. I often refer to option #3 as Get Better or Get Bitter it’s your choice 😉 And if you are a care taker of someone sick… I’ve been on both sides as well, Welcome to Holland is an interesting read as well. It also illustrates that it is in your perception what your reality will be. Often when you become ill it is up to you to redefine your reality. Make it a rewarding one!!

    Reply

  2. Vicki W
    Apr 04, 2008 @ 15:40:58

    I couldn’t agree with Jan’s sentiment more:

    Often when you become ill it is up to you to redefine your reality. Make it a rewarding one!!

    I’m in a little different situation because I “look” normal. Allergies and chemical sensitivities don’t show up unless there’s a bad reaction or an asthma attack. People tend to think that I am making too much of a big deal about my situation and that the reason that I don’t do things (go places, eat stuff) is because I don’t want to, not because I’ve learned my lesson and don’t consider the risk acceptable.

    You are also right that people don’t value their good health when they have it in the same way that some people don’t value their good job until they lose it. Our priorities are often totally screwed up. I think that for me, health limitations are a blessing in that I have gotten my priorities right early on and, I think, lead happier and more productive life.

    Reply

  3. Sharon Dixon
    Apr 04, 2008 @ 21:09:34

    Gayle, amen to your comments. I got a lesson early in life when I had to wear a Milwaukee brace for scoliosis from age 13 to 15. I don’t know if you’re familiar with a Milwaukee brace, but it came up under my chin to help stretch my back and keep it from growing any more crooked. I had to get used to being stared at all the time when people thought I wasn’t noticing. Adults were as bad as children. Fortunately, I had some great friends who treated me as if I was “normal” and that helped me get through it.

    Vicki, your mention of allergies brings to mind something that annoys me. I’m allergic to fish and seafood. I don’t make a big deal out of it and will go to a seafood restaurant with friends as long as they serve something I can eat…which most do. But the thing that really annoys me is when I get this from people, “Oh, I forgot that you don’t like seafood.” They act as if I’m just being picky rather than believing I will get really throw-up ill if I eat it. I have an ex-BIL who once nearly drove me crazy at a meal insisting that I taste the fried fish everyone else was having for dinner. I kept insisting that I knew what it tasted like, but just didn’t want to be sick. Why can’t they just say, “Oh, I forgot you can’t eat seafood.” I guess that’s a petty thing to be annoyed about, but it has happened often enough to irritate me. I think that people who have never experienced illness don’t have a clue.

    Reply

  4. Vicki W
    Apr 04, 2008 @ 21:25:23

    Sharon, I understand! My Dad, until he died, would as me if I was still allergic to milk and I have a brother who (only half jokingly) says it’s all in my head. At least he will say what he thinks out loud. Most people believe that but won’t say anything to my face. My friends and close co-workers have seen me with bad reactions enough times to know it’s real.

    Reply

  5. Gayle
    Apr 04, 2008 @ 22:30:05

    Jan….. the “get better or get bitter”… I have heard that before. My only beef with it is that so many with chronic illness wont get physically better, they will only get worse. But if the “better” is really a better mental outlook and attitude, then I totally agree. Matter of semantics…. matter of how someone interprets the statement. But in general, yes, a better attitude makes a better reality.

    I understand Vicki, as I have allergies too. My whole family does. And I dont look disabled most days. And when I do, I am not even ABLE to go out in public. So most people dont see me when I am at my sickest. Yes, I have had people say to me they think I am faking… including family members. Now… wanna talk about what THAT makes you feel like???

    Sharon, yes, I do know what that brace looks like. And of course you are irritated that people treat you that way about allergies. Ahhh…. so many clueless folks out there.

    Reply

  6. kayp
    Apr 05, 2008 @ 00:19:38

    first i want to thank gayle for passing the spoon theory on. and secondly i appreciate those of you that have commented and shared your personal situations and perspectives so that i can learn from you.

    there are so many “lines” in this life. and when you don’t have a wealth of experience in certain situations, you don’t have much to draw on. i’m sure i have looked away from someone with a disability but not with malicious intent. i simply didn’t want to be “caught staring”. is it possible that some people on some days prefer to be invisible (gayle’s word not mine) to being stared at (an interpretation, not an intent)? it would be so much easier if there was just one right thing to do and it was the same for each person and every day for every person.

    i have experienced trouble finding the “line” with my daughter who due to an accident has limitations. am i doing enough or too much? am i encouraging or pushing? am i being supportive or keeping her dependent? is it time to let her sink or swim or time to throw out the floaty and reel her in? and tomorrow’s a new day with all the same questions and all the self doubt.

    and finally……the postcards is ADORABLE. I LOVE IT.

    Reply

  7. Jan
    Apr 05, 2008 @ 08:18:22

    Gayle I do look on it as a mental attitude. As I have said, walked both sides of this as patient and care giver. What I find is bitter & angry eat a spoon. They make your health worse. And if you look at someone with anger or speak in anger or resentment, then you are usually met with anger and a bad attitude. If you start with kindness, you have a better chance of getting kindness back. So you can either sit there, be bitter and never do another thing besides complain….. or you can get better. Because studies do show that attitude has a drastic affect on your health.

    Reply

  8. Gayle
    Apr 05, 2008 @ 08:58:09

    Jan…. ABSOLUTELY. *I* knew that was what you meant, but wanted to be sure everyone else did too. I agree with everything you just said.

    Kay…. I am so glad you finally chimed in. I knew you were sitting in the corner, waiting. More to come on all those questions and concerns you have. I bet the rest of the readers will have input and wisdom to share too.

    Gayle

    Reply

  9. Sharon Dixon
    Apr 05, 2008 @ 14:56:46

    Kay, I appreciate your open-mindedness and wanting to do the right thing. To clarify on being stared at versus being invisible, I think we want neither. What we want (or what I wanted when I wore the brace) was for someone to make eye contact and treat me as they would any “normal” person…..not look and quickly turn away only to stare when they thought I wasn’t looking. I didn’t even mind people asking me about the brace. I just didn’t want to be ignored or stared at.

    As far as attitude, I totally agree that a positive outlook is the only way to survive. Even though we are freely airing our gripes here, the people I know who are responding are very happy, upbeat people. As a matter of fact, it sometimes appears to me that the people who have real problems are more content than those without limitations and challenges.

    Reply

  10. sammi
    Apr 05, 2008 @ 21:29:03

    I have a hard time accepting the fact that I have a chronic illness … well two, actually. I get very angry when I can’t do something I did when I was 40 or 50 or even 60 !! Angry with myself, mind you ….. it never uhhhh seldom shows on the outside. It is even harder to let someone on the “outside” know that I have limitations. Consequently, I do much more than I should and end up in a bad situation. Reading the spoons theory has really helped me to see that I am NOT being selfish when I think about me and my body first … then the activity someone is clamoring for me to join. I thank God for sending me my friend Gayle who has taught me to peek behind door 3 and now has really taught me what she has been trying to tell me for years – by using spoons! As for the “new reality” or the “new normal” ….. it SUCKS! But it is what it is ……. and so I no longer feel guilty about sleeping in, or taking a nap, or even saying “I can’t …….” Others seem to be able to accept “I can’t” more easily than I can accept it about myself. I am learning …..

    Reply

  11. KK
    Apr 05, 2008 @ 22:59:53

    Wow, Gayle. Thank you so much for sharing the Spoon Theory. I battle daily with fibromyalgia and I can relate. My good friends are wonderful – when I’ve been quiet or MIA they understand. When I write that I’m having a flare-up they care. The ones that act like I’m being a wimp or a whiner have been quietly and gently dropped from my life.

    Gentle hugs and wishes for many days of unlimited spoons to all.

    Reply

  12. WD
    Apr 22, 2008 @ 15:26:42

    Thank you for sharing the Spoon Theory. My brother battled an agressive MS for 16 years before passing away from Lukemia (brought on by the MS drugs). I watched him go from a strong Marine Corps officer to asking his wife, kids, and family for help. I would find it very interesting and sometimes frustrating to hear co-workers and freinds speak about something without having to make the choice. Because he was my brother, I always thought about things I did from his perspective, such as using a public restroom that was either extremely small or even not so clean. It would often cross my mind wondering how my brother would do it. The Spoon Theory seems to be the best way to describe what he went through on a daily basis. Thank you so much!

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: