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How I Disabled my Disabilitiy

By Edited Jul 1, 2014 0 0
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butterfly has always been a symbol of transformation
Rhuematoid arthritis (RA) hit me hard and knocked me off my feet. For the first five years I couldn't work at all so was fully disabled and on Social Security Disability from the US government. Feeling sorry for myself didn't make things better, so I started rebuilding my life the same way I would approach a problem for one of my clients.

There is no cure for RA, but today I am rarely in pain, am working full-time, have health insurance, and am enjoying life once again in spite of RA. Webster's Dictionary tells us that to disable is to incapacitate or make powerless. That is what I have done -- not eliminated my disability, but made it powerless. This is the method I used.

Define the Problem

Figure out what the problem is or what the problems are and write them down. Start noting every time your disability causes you a problem. Write down what you were trying to do, what you couldn't do, and what happened when you tried to do it, i.e., why you couldn't do it. What is it that you need to do that you can't do? What specifically are you doing when you experience pain?

Be very specific. In my case, I experienced a great deal of pain every time I tried to turn a doorknob. The medicine I took weekly made me so dizzy and nauseous that I was unable to stand up or even sit up for 24 hours after I took it. I couldn't grip the shower faucets tightly enough to turn them on. I couldn't apply enough pressure with my fingertips to zip a zipper or button buttons and I couldn't lift my arms over my head to pull on a shirt, so I couldn't get dressed by myself. And so on. (Don't focus on how long the list is. Make the list.)

You don't have to create the list in one sitting, just keep adding to it as you find more difficulties. Be as specific as you can. As a side-note, be sure to bring this list with you when you visit your doctor or physical/occupational therapists so they can see how your disability or disease is affecting you. Also, the list can provide useful information should you have to file for disability.

Focus on the Highest Priority Problem

Look through your list and choose the one item that causes the most pain, the most worry, the most disruption, or the most embarrassment. That's the problem to work on first. The reason disability is so overwhelming is that there isn't just one problem. There may be a single cause, but there are many problems that result from that cause. It may be difficult to choose just one to work on, but remember that you will come back and work on the others as you are able. You can't fix them all at one time, so bite off a bit you can chew. If you can't decide which is most important, narrow it down then just pick one.

butterfly, a sign of positive change
Describe Your Desired Outcome

Figure out what you want and need from your solution. This requires some thought and creativity. For instance, if I was working on the pain caused when I turn a doorknob as my highest priority problem, I could say the outcome I want is to not feel that pain. If that is truly all I want, I could solve the problem by staying shut up in my house and never opening the doors. That's not an acceptable solution to me. I wanted to be able to come and go from my home without worrying about being in pain from using the doorknob.

Being able to clearly articulate the problem you are having as well as what you are trying to accomplish is key. Absolutely key. If all you can do is talk about the problem and how you wish someone would "fix it", you will be seen as a complainer and probably won't get much help. If you can clearly and succinctly describe the problem and your requirements for the solution, a lot of people will do what they can to help you. That's human nature.

Collect Possible Solutions

Bring a notepad when you go to the doctor. Ask everyone in the waiting room if they have found a solution to the difficulty you are facing. Write down what they suggest and thank them. Ask your doctors if they have suggestions. Write down what the doctor suggests and say thank you. Look on the Internet. Strike up conversations with people in support groups, on the subway, in the grocery store. Keep asking, keep looking for ideas until you find one that works. Don't get discouraged if the first thing you try doesn't work or if all the solutions offered seem to be too expensive. You are looking for solutions that will meet your needs.

Choose the Best Solution

1. Fool-proofing involves using any mechanism that either prevents a mistake from being made or makes the mistake obvious at a glance so that it can be easily avoided. For example, if ball-type doorknobs are painful to open, you could replace every ball doorknob in your home with a lever doorknob. This would prevent you from making the mistake of grasping a ball doorknob in your home (because there wouldn't be any).

A second example would be if you had pain medication that you could take no less than 4 every hours. If you used a bottle cap that started counting down from 4 hours when you closed the top, you would know if you tried to take it again too soon because the timer would still be running down. That would make the mistake obvious at a glance.

Both of these methods would be examples of fool-proofing. Fool-proofing to prevent the problem altogether is the best choice if you can find this type of solution. Once installed, the solution, or at least a reminder, is built-in even if you forget. Ideally, there is nothing to remember or keep up with, you just have to make the change and the problem is solved. As an example, if you add a foam funnoodle to your broom to make sweeping easier, that problem is solved. You can't pick up the broom without the solution automatically being there.

2. Invoke a new process by changing your habits. This involves finding a better way to accomplish the tasks, then changing your habits to use the new process. Don't try to change 16 habits at once. Focus on changing your habits around the single most important item until the new habit is second-nature.

Examples of solutions that involve changing your habits would be remembering to wear arthritis gloves at night, remembering to wear Isotoner driving gloves when you drive, or remembering to squeeze the toothpaste the painless way.

3. In order to accomplish either 1 or 2 above, do you need resources you don't currently have? Keep lists of what you need, being very specific. If the need is for money, note the specific cost and where the purchase can be made. If you need help from a person, list specifically what you need them to do. If it has to happen at a certain time of year, put it on your calendar.

butterfly, symbol of rebirth
Implement the Solution as You Are Able

Once you have identified (1) that the solution is a habit that needs to be changed or you can use fool-proofing, (2) if you need to buy anything (new doorknobs for instance) and how much that will cost, and (3) if you need help creating the solution (building a ramp for instance), then implement the change or start looking for ways to fund the purchase and friends or family or volunteers to do the work.

If your best solution is unable to be implemented immediately, make sure that the solution and all you need to implement it are on your list so that you don't lose track. Then go back to the beginning step above (Focus on the Highest Priority Item) and choose the next problem you will tackle. For instance, if you have identified the solution as replacing bulb-shaped doorknobs with lever-handled knobs but you don't yet have the money to buy the lever-handled knobs, make sure that's on your list. Your list should include the cost and location to buy the lever handles you have chosen. When people ask what you want for Christmas, copy down the information about what you need and give it to them. Or maybe a neighbor will redecorate and replace her lever doorknobs and give them to you. But while you are waiting for that door to open, choose the next problem from your "Problems List" and start looking for a solution there.

An example from my life was that I identified a problem that my vaccuum cleaner was way too heavy to use with the arthritis so my floors were always dirty. After looking for solutions, I decided that the best idea was to replace my carpeted floors with wood laminate that could be cleaned with a light-weight Swiffer. Unfortunately, the change was going to cost over $5000 which was way more than I could spare. But I knew that was the solution for me. There wasn't anything I could do about it for years, but as I heard of people installing this type of flooring or having it installed, I collected names and phone numbers of contractors who had done a good job. (Meanwhile, I was working on other problems on my list.) When my hot water heater burst open and flooded the house, I asked my insurance company if I could use the insurance money to replace my carpet with wood laminate. They said yes. I had already identified the contractor I wanted to do the work, so I called him up and he went to work. If I hadn't identified this solution and kept it in the forefront of my mind, I would have taken the insurance check, replaced the carpet, and not thought about the flooring in terms of arthritis issues.

It's important to identify what you need so that you can identify opportunities as they arise. If you have collected the information you need (quality contractor's names and phone numbers) you can act quickly when the funds or materials become available.

The Big Picture

As solutions are put in place for one problem after another, life will become more and more manageable. Not only that, but you will get better at finding solutions, you will hear about more options as people bring solutions to your attention. Like a stone rolling downhill, you will gain momentum as you solve specific problems presented by your illness or disability. The disability's limitations on your life will diminish significantly over time as you find more and more ways to do the things that are important to you.

Being a solution-oriented person rather than a complaint-oriented person makes all the difference in the world in your relationships with people. In addition, you should gain a stronger sense of control and hope as you take charge of your situation and mold it to your desires.

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