Being Handicapped: Lessons Learned


My handicapped decal expired on the last day of January. I attempted to live without it, but I caved today [a mere 11 days later] and called my doctor for an extension (which he predicted I would do). I really wanted to let the decal go, but the truth of it is ... I still need it with my pending hip replacement for my right hip, which is causing me a lot of pain. I had several reasons for wanting to give up the decal -- one being less judgement from others. I thought this would be a good opportunity to share some lessons learned with you all about being 'handicapped.'

1. If people treated everyone the way they treated me when I was obviously disabled, the world would be a happy place.

Seriously, I have never seen so many smiles or seen such kind actions from strangers as I did when I used a wheelchair or an aide. People will literally hop out of your way and apologize when they weren't even in the way to begin with. They will hold doors for an entire minute, waiting for you. They will let you cut in line. They will even be sweet to your misbehaving children. Just about everyone would smile at me. One time, a woman even stopped and asked if she could pray for me. It was great to be reminded that people cared. I'm still the same person, but now that I can walk without an aide -- strangers aren't nearly as nice to me. I actually think of this when I'm in public now. I try to treat everyone with the same type of kindness I was shown.

One of my favorite quotes is: "Be kinder than necessary. Everyone you meet is fighting some sort of battle."

Man, that rings true. Just because you can't visibly see what a person is dealing with, doesn't mean that there isn't more there. Let's be kind to one another.

2. When you pull into a handicapped parking spot, people will watch you intently.

I park. I hang my handicapped decal from my rear view window. I look around, and more often than not, someone is watching. I don't know if they are just plain curious about what my handicap is, or if they are waiting to make sure I am actually handicapped. Either way, they wait and they watch. Just the other day a couple pulled into a spot next to me. I had just parked and hadn't hung my decal yet, because I was getting some papers ready to take with me. I could feel them staring at me so I looked over and sure enough, they were. I hung my decal and got out of my car and smiled at them. I'll keep these experiences in mind, too, in the future. I'll give people the benefit of the doubt and trust that if they are parked in a handicapped spot, it's because they should be. If they are parking illegally, let the cops handle it by giving them a ticket and a fine. It's not your job [or mine] to determine who is really handicapped and who is not. It's also intrusive to ask a stranger about their condition.

What people need to understand is that handicapped decals do not necessarily mean that person should be in a wheelchair or have any difficulty walking. They may appear absolutely normal, but they could be fighting an invisible illness that dries out their organs, causes pain, constant dizziness, nausea or brain fog. There are hundreds of autoimmune diseases that affect people in different ways. Possibly, this is a problem created by the image on the decal itself. Regardless, we should give everyone with a handicapped decal the benefit of the doubt. It's the right thing to do.

3. Accessibility is a major issue.

First, think about all of the places you go within one day. Work, a public restroom, to a sports game, the store maybe? At work, cubicle walls made it nearly impossible to maneuver in a wheelchair. Racks inside stores are placed way to close together. Graveled and grassy terrain for sporting events are not user-friendly. Doors become your worst enemy -- Most do not have buttons that will automatically open the door for you or if they did, they didn't work (trying to open a door, while reversing a wheelchair and then getting through a door before it closes on you is not easy -- especially without lots of practice). And stairs, forget about it. You'd be amazed at how many places are only accessible by stairs. In order for increased independence for disabled people, accessibility HAS to improve. I can't help but to notice these things still. Even though I'm walking now, I will report anything I notice to a store manager or employee -- kindly, of course.

4. You can't expect people to understand what you are going through.

Daily life can be exhausting. It was for me, and some days, it still is. When I wake up in pain, I almost instantly become overwhelmed by everything I need to do that day. The simple things, like picking up milk from the store or just taking a shower, become very difficult things. And most difficult of all, no one really understands what you are going through. More often than not, the people in your life cannot "relate." People don't always understand your decisions when they don't understand your condition. They might even label you as "lazy" [that one hurts].

To gain a better understanding of others who are handicapped or living with an autoimmune disease, or anything else affecting their quality of life, please read "The Spoon Theory."

The Spoon Theory
by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Certainly, I've learned many more lessons than this. But these are the ones that have stuck out for me. As I've said many times throughout my blog, perspective is a powerful thing. I hope that one day I can get past the need to use a decal. Unfortunately, I'm not there yet. And I'm afraid you all are just going to have to take my word for it.

Do you have others to add? Feel free to leave comments or your own 'lessons learned' below.

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