No matter which task I perform, I am relatively safe until I try to move from my wheelchair to another seat [toilet / bed] or back to the wheelchair. Each move of the hands, feet, arms, wheelchair, etc is carefully planned and must be executed exactly to the plan. It is a finely orchestrated dance of the mind and very uncooperative body fighting my arch rival, gravity.
      Yep, gravity. Always there, never faltering, constantly pulling on me and sometimes, bringing me down. That is a physical and emotional state. When I do hit the floor, I am unable to get myself back up. Yes, too many people laugh at the commercial of the old woman crying, "Help, I've fallen and can't get up!" I understand her plight. There is NOTHING entertaining about it.
      So, as I perform a transfer from wheelchair to toilet last week, my attention waivers for a moment and somehow, the wheelchair slides to the right as I move left. That creates just enough space for gravity to reach up and pull my butt into that space. The panic rushes up through my body and my brain races for a solution. I gather my thoughts and strength, take a deep breath and once more, heave toward the toilet. The wheelchair moves more right and gravity gives my butt another pull. Greater panic rushes through me and I am now at the awful, terrible, frightening, OHHHH NOOOOO moment. Still suspended but past the point of recovery with the knowledge of what will happen next. I make one last feeble, futile attempt to find ANY seating. The gap opens, my arms tremble and gravity pulls me down.
      The move is slow and I plop on the floor. The second wave of panic hits harder than the first. Someone left his phone on the desk in another room; 20 million light years away as gravity holds my butt in it's relentless grasp. This means that I will laying on a cold and very hard ceramic tile floor until my wife gets home. The math was easy. It's 12:30 now and my wife MIGHT be home by 6:00.
     She did arrive at 5:30. I'll take ANY blessing at that point. No, I won't be forgetting my phone again and I will try to be more careful. Sir Isaac Newton, you can warm up my cold butt!

        Since I don't drive, I don't really get out of the house very much. Frequently, people seem to feel this is terrible and push to create opportunities to 'help' me. I truly, sincerely appreciate their efforts. However, I don't feel that I am really missing much by getting out except to join others in an outing; sharing a common experience. That is a valid point; sharing / fellowship / comradeship is an important aspect of the human condition. We truly do need each other to share adventures. It is a great method of bonding.
        However, there is the other side to this story. It's the side about bowel and bladder issues. The side about putting other people in a position of caregiver. The side about putting others at risk; requiring them to do things they didn't predict could or would happen. The side about physical pain and struggle. The side that very little of the world is accessible with the kind of deficits specific to me.
        I have been severely disabled for 22 years. I have done the "I'm gonna do this whatever it takes". I have my battle scars. I have my successes and my failures. Rest assured, if it is a priority for me, I'll put a plan together and take the risks. For now, I am very content to enjoy the comfort and safety of home.
        I am grateful to my friends and family who are eager and willing to do whatever it takes to enable me to continue to enjoy  life. That love keeps me going.
        I'm not housebound, I enjoy being at home...

Recently, a friend has been pushing hard with the question, "How are you doing?" Clearly, they are aware that things are not totally 'peachy' and are opening the doors wide to avail themselves to let me spill the beans and let it out. This is  a kindness that is truly wonderful. However, some friends seem to feel that if I don't use this opportunity given me, then, there must be a problem in the friendship. Sorry, sometimes not talking about it; getting away from it; finding a distraction is what I really need. Don't worry, we're still friends!

     March 7th - 16th are the dates for the Winter Paralympic Games in Sochi. Of course, the Ice Sledge Hockey is my favorite event. However, I respect all the athletes because I understand the effort and sacrifice needed to compete. I have not been able to find any specific times for broadcast coverage here in the U.S., but, I'll pass the info along when I do...

        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...

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

I was just reading an article that listed the top portrayals of people with disabilities in the movies. First on the list was the character Lt. Dan from Forrest Gump. The article then listed another four. What jumped out at me was that the author never mentioned Forrest himself!

I pondered about what made this movie character's disability disappear before our eyes? We are always clear that his spine "is as crooked as a politician" and "he's five little points below normal". Once Forrest runs out  of his leg braces, we see him as overcoming his disability and just accept him as a sweet, loveable, gentle, honest soul.

The disability disappears because we look past it. We see the person not the disability. Hmmmmmmmmmmm..........