Dis-a-bility

Disability is a word that people have a lot of opinions about.. as far as political correctness is concerned. I have no idea where the word came from or who rightfully the word gets applied to. There may be other words that are easier to say and are less offensive to those who folks who are less abled.

Most folks are driven to show how very much they are like every one else. They do not want to have it pointed out how different they might be. A bald man likes to think that he is no different than any full haired co-worker. The bookworm does not like to be unfavorably compared to the jock. We want to be like everyone else. Disability is a divisive word no matter how it is used.

There is probably a lot of misuse of the word, disability. Disabled folks are often abused in one way or another. But our culture has always abused the weak and downtrodden. Nothing new. This is also not about what concessions the world needs to make for the disabled. In the last decade, laws have made great strides in improving opportunities and the mobility of the disabled.... change is slow.... but there is forward movement there.

For years we have comforted ourselves in thinking that all of us are disabled in one way or another. Some disabilities are more visible than others. We may have physical limitations due to birth defects or injuries or poor health or old age. We may also have emotional limitations that damage our ability to move forward in life or to form healthy long lasting relationships. We may be spiritually damaged by the experiences of our youth.

None of that matters. Because in our family disability has reared its head and it is nothing like I ever thought it would be. The days have arrived that we always dreaded for her. We thought they would come but hoped against hope that they would not. We are not talking about a couple of crutches or a cane or a wheelchair. We are talking the end of promise and hope. It is about limitations and grasping that you cannot be anything you wanted. At an age that other children are seeing a horizon that is limitless, Amber is learning limits.

It is not about pity or about feeling something for someone who struggles more to do what you and I do easily. Amber’s determination, stubbornness, and sheer will, will allow her to accomplish much. But those of us who watch are saddened by that horizon that is shrinking before her.

I see in her the overriding desire to be like everyone else. Today she bounced around on the stage of her school’s play, singing and dancing and giving it her all. She desires with all her heart to be like everyone else. Except that she fell as she was pulled along with the other dancers in one scene of the play. The difference between Amber and others… is that she bounced up in a split second and continued on despite a goose egg on her little leg. Another child would have been stunned it and it would have taken them a bit to get back up. Amber desires to be like all the other kids and for the parts of her life that she is not like them, she is determined to make look good, anyway.

She has had to come to terms with needing help. All these years she wanted nothing but to run and to play lacrosse, to be a basketball star and to be so very much the jock that her mother was. She has slowly given up one activity after another, each with the hope that it is only a temporary sacrifice. She has had to accept the need for help in walking. She had used a wheelchair after surgeries. But now it is clear that at certain times of the day she needs more help than others.

She wakes up stiff and struggling to move. It takes warm showers and Motrin and stretching and massage to get the legs and back to moving so she can start her day. As the day wears on she does pretty well, after all there are kids to catch up with. By the end of her school, day fatigue takes over and makes her practically immobile. It takes more meds and other drugs to manage movement on a regular basis.

You see though disability has made its entrance into her life, it has brought a very uninvited guest. It has become all about the P-word, PAIN. Pain seems to have arrived in our house. It may go away for a period of time but it always comes back. Pain can be worked around and occasionally through but is always present. Even in its absence via medications... its presence is there. At times the pain lays her flat and consumes her with sweats and shakes. At other times it is near, fleeting, but threatening to always step forward and take over. Her constant companion has become PAIN.

We always knew disability would be coming. What we didn’t especially expect is that pain would be the silent twin. I will never again see a disabled person without wondering about the pain that got them there. Not everyone has pain… but when your body suddenly does not work and you try to make it work and struggle against unseen walls.. and keep battering and trying to do what you always used to do .. with the outcomes you always expected and it does not work anymore. There is PAIN.

Pain is so overwhelming. It consumes and takes everyone with it. It takes away the future and forces everyone to the present. It robs us all of hope. She feels it but we watch it and hurt inside. We want to fix it and she learns we are not able. As her parents we are as helpless as she. We want to sooth the fire that hurts her and we talk softly and rub her skin but are powerless to touch what really hurts. It consumes us too. We hear the quiet cries and watch the laborious walk. We see the moments that appear carefree and childlike and know the cost to be paid later. We fight with doctors; fight with insurance; fight with schools; and nothing changes the reality of PAIN. Mammy