Debbie

[stavros]

Thanks to Tony Ryan at http://www.leap.cc/cms/index.php?name=Blogs
What have you done today?
Peace to all

Debbie is one of my sisters-in-law, Debra Kay Jeffryes Terwee. She lived in Sioux Falls, South Dakota for the past 35 or so years after her mother moved her and 3 of her siblings there because of the state’s quality program for victims of Cerebral Palsy. Last Tuesday morning, at 10:15 AM CDT, Debbie passed away quietly in Sanford Medical Center in Sioux Falls. Those with her at the time (four of her sisters, including the family’s oldest child Bette Rose Ryan – my wife - and her mother) had gathered to talk to her. They wanted her to hear them say they loved her (even though she was unresponsive they believed she could still hear) and that they understood that it was time for her suffering to end. In short, they told her, lovingly, that it was okay to let go.

She was 49 years old.

In the beginning, being born with cerebral palsy as a “preemie”, she knew nothing more than what she had. She was a happy child who managed to do a pretty good job keeping up with her siblings (only two of the seven kids were younger). Spending most of her younger years with crutches, she slowly regressed to needing a wheel chair, although able to move herself in and out of it as necessary for basic functions.

Later in life, as the disease progressed, she became more and more limited in mobility. She “graduated” to an electric powered wheelchair the past few years and amazingly functioned quite well.

Not one to sit around and feel sorry for herself, she managed to accomplish a lot in life. She maintained her own apartment, had birds for pets and got around town via the public para-transit system. She worked, sometimes as one who checked stores, theaters, housing, etc. for compliance with accessibility requirements.

In the past few years she required the assistance of aides as she could no longer move herself in and out of her wheelchair. Nonetheless, she was still a cheerful being who took life as it was and found enjoyment in her birds, lots of music, poetry (some of which she wrote herself) her youngest sister’s children (they loved rides with her in her powered wheelchair), and the many people she worked and lived around.

One of the big problems with Debbie’s illness was pain and spasticity management. She was given a variety of medications, including the insertion of a pump in her body used to distribute medication at a specified rate. Problem was, that thing needed adjustment frequently and was only adjusted via an intrusive process. Being out of adjustment meant too much weight gain or loss and other problems.

It was suggested to Debbie that she try marijuana, which was known by many to be effective in both pain and spasticity relief. She would not, because it is illegal and she feared losing what little freedom and independence she had.

Lately, she became more and more ill. Her medications sometimes caused problems with her sense of reality. They weakened her system and made her more susceptible to various and myriad other maladies.

A couple of months ago Debbie was hospitalized because she had a variety of serious symptoms. Doctors searched and searched for causes and found some relief for her which, unfortunately, was only temporary.

They never fully discovered what ailed her and – we believe for a variety of reasons – she succumbed last week.

Debbie was tired: tired of becoming increasingly unable to perform everyday tasks for herself; tired of increasing daily pain; tired of illness. She made it clear she wanted no part of attempts at revival should she die.

Everyone in the family knew Debbie’s life would be shorter than most – it is a part of having cerebral palsy. But most of us also knew her life could have quite possibly been longer and would have involved far less suffering had she been willing to use a natural medication proven many times to be more effective than those which doctors are allowed to prescribe – a simple, nearly side-effect free substance that would have been far less expensive.

So, I, among many others, ask again why it is we can’t get our nation’s government to at least allow a known effective medication to be used by those who are ill and could benefit greatly from its use. Why must they suffer because of a misguided attempt to “save the country” from the evils of drug abuse? Why, if they choose to take the risk and use this effective substance, are they hunted, arrested, jailed and thrown back into pain and misery?

For government, that is simply cruel. For law enforcers, it is certainly not serving and protecting. There are so many reasons this failed policy needs to be changed. Debbie, dear as she was to us, is just one of millions.

Help us fight for change: for ourselves; for our loved ones; for all those who suffer and could find real relief, like Debbie.

Thank you for any effort you may make.