As I struggle throughout each and every day, I do my best to stay positive, find the silver lining, look on the bright side, etc. And, I manage to do that pretty well. However, to be brutally honest, I really do hate having to struggle so much. Sometimes, you just have to admit it and then, move on...

        I am the person who seems to have the most health problems in the family. For that reason, I frequently get most of the attention from friends and acquaintances. 
        What was a real eye opener, though, was how MY problems turned into THEIR problems, too. I became aware that my illness or my injury has a greater effect on each person in the family than I had considered. My disability really is OUR problem. With that in mind, I have to remember to reach out; make comfort and support available to everyone. Share what is going on even if I don't feel like talking about it.
        With that in mind, while it is kind that people show support by crediting me for being so brave, courageous, etc., they need to be reminded that I would give up being the poster child in a hot second if I could get my function back. I also know that the family wishes I could have that, too. I know that I couldn't be 'successful' without them. 'Them' includes aunts, uncles, nieces, nephews, cousins, in-laws, etc., etc.. It takes a village to raise a person with a disability...

When your relative lives far away, a holiday visit may reveal disconcerting changes.   And once you’re home again, distance makes everything more challenging, from knowing what’s needed, to getting tasks accomplished. Here are some tips.

  Stay in touch. This is a win-win. You stay current on issues, and your relative gets the emotional boost.

• Use the phone, email, and/or Web-based video calls. Connect at different times of day to see what’s up. Is mom sleeping a lot? What’s on the table at dinnertime?
• Ask about any injuries or falls. This information is important but may not be volunteered.
• If your relative lives alone, consider having him or her give you an “I’m up!” call or text by a preset hour.

 Plan ahead. When visiting, use your time wisely. Do things with your family member that are just plain enjoyable. But also

• go to medical appointments. Get to know the providers. Ensure that releases are signed so that you can talk with the doctors as needed.
• address housekeeping issues. Fix potential hazards, such as loose rugs, rickety stairs, and burned-out light bulbs. Check for signs that regular help is needed, such as garbage or laundry piling up.
• get into the kitchen. What is in the refrigerator? In the cupboards? Scorched pans may indicate your relative is forgetting to turn off the stove, a common sign of memory problems.
• check the desk. And ideally, scan the checkbook. Is the register in order? Any overdue notices?
• connect with the neighbors. And/or nearby close friends. Give them your contact information.

  Stay organized. At your home, keep a binder up to date with documents essential to healthcare and money management. (See our December 2013 article, "What you need to know.")

  If you believe that help is needed, offer ideas instead of mandates. Insist on change only when safety is in jeopardy.

From Good Samaritan Hospice

In every single way that matters, disability does not change a person. Instead, disability threatens concepts a person has held about who they are. People bring to their disability whatever mix of beliefs, attitudes, talents, charisma, fears, or social skills they have or have the capacity to develop. Who a person is impacts their ability to adjust to disability.

One of the common questions people with disabilities are asked is, ‘What can I do to help?’ Perhaps the first thing someone can do is to understand that a person with a disability is the same person they were before experiencing their form of disability. It is important not to treat them differently simply because they have a form of disability. Do not expect them to be any weaker or stronger, and do not be surprised if they have found new qualities within themselves that have not surfaced before.

The experience of a form of disability forces the issue of, ‘finding one’s self.’ Some people take pride in the things they learn about themselves through the experience of a form of disability. They appreciate the way disability helps to define their values.

A number of psychological adjustments have little to do with the disability a person experiences; they are issues everyone does. As an example, a person might be frustrated because they are having a hard time finding someone to love and believe it is their form of disability that is the cause of the loneliness they feel. The issue; however, is a part of many people’s lives, whether they experience a form of disability or not. It is important for people with disabilities to avoid making disability a scapegoat for issues that might very well have appeared in their lives anyway.

For the majority of people with disabilities, disability does not define who they are; it is something they deal with when it becomes necessary to do so. One person with a disability noted that the entire human race is essentially disabled because we are unable to live together in peace, something that has always been so, and will continue to be so in the future. The question then becomes, ‘What is normal?’

Excerpt from: Disabled World; Psychological and Social Aspects of Disability
Painting by Tom Kelly