A BODILY SCREAM OF INNER LONELINESS

When I first fell ill in Spring of 1995, I suffered from Bell's Palsy intermittently for about 6 months. My job tried to fire me but days when I had a tiny bit of energy and could sit up, I filed pro se papers to keep myself on disability and hold my employer accountable. I didn't want to be a burden to my ex- husband or family; though my ex quietly reminded me I was every chance he got.

As the paralysis lifted, the illness did not. I went online for other sufferers of "invisible illnesses." I was in active denial that my disability was permanent. I didn't want to believe it. Not me! No way. I went online, on to IRC and the support groups... there I met Judith Curran. I only knew her for a brief time until she made national news by hiring Dr. Jack Kevorkian to end her suffering. ARTICLE HERE.

Yes, in the last 10 years I have considered suicide a few times. Yes, I am well aware it is morally & ethically wrong. I've suffered from PTSD for about 30 years now from a lifetime abuse; which probably contributed to my current physical state.

I was told that I was a "waste of space" and no longer "wanted," called "lazy" and "useless." I've been told I don't deserve to be a mother because I am ill and that I "brought all my problems on myself." Maybe there's some truth to some of these statements. But killing myself would be a short term solution to a long term problem. And what would it say to my children who have opted that they want me to be their primary custodian and whom I adore.

It is not good for us to be alone (Genesis 2:18),

which is why we are ultimately and intimately attached to each other (Genesis 2:23) in family, tribe, society and nation.

I understood Judith's decision. Because we are alone. Trapped in our homes, trapped in bodies that no longer respond and trapped in a world that looks the other way or denies that we are truly sick.

There are no words to pass on the constant self-blame, self-hate and depression that follows when you have your life and health pulled out from under you. There is really no way I can explain the stupid decisions you make once this happens to you and the people that are just waiting to prey on your mind, body and soul because you are weak and desperate.

You have more than an "invisible illness" - you become an INVISIBLE PERSON with no definition to your life and no good reasons to continue. Judith is missed by her family, as are all the people who decided that the way out was the only way.

"My G-d, the soul you have given me is pure. You have created it, you have formed it, You have breathed it into me, you preserve it within me and you will in the future remove it from me and will some day return it to me."

(Daily Prayers)

Judaism regards every life as being of infinite value. But society, believe me, does not. Not making money, not visibly productive = "no value." Many disabled people fall into severe depression and get involved with things & other people just to try to prove to themselves that they still have value. These ventures invariably end up being exercises in futility & personal objectification that leaves the disabled feeling lower and more depressed than they were before.

I ask the few people who do read this site to take a few minutes, and please read this article. Its hard to hear & read, I know. But please, pass it on to someone you may know suffering from a similar invisible disability. Let them know you "get it", you believe them and you care.

(highlights mine - Barbara)

Can It Kill You?

On August 15, Dr. Jack Kevorkian assisted in the suicide of Judith Curren. Judith Curren suffered from Chronic Fatigue Syndrome and Fibromyalgia among other ailments. Her death sparked controversial media attention.

In Curren’s case, it was discovered later that she was perhaps suffering from depression, not only due to her multiple illnesses, but also because of a possible turbulent relationship with her husband. Three weeks before this assisted suicide, her husband was charged with assaulting her. Her husband, a psychiatrist, also reported that she suffered from obsessive compulsive disorder and refused to take anti-depressants. So, can fibromyalgia and chronic fatigue syndrome kill you? It killed Judith Curren at 42 years of age.

Some may view suicide as an extreme measure, but according to Dr. Paul E. Whitcomb, “Fibromyalgia sufferers have one of the highest suicide rates.” And OB/GYN News reported,

“Among the 1,163 with confirmed fibromyalgia, for example, the rate of suicide was ninefold greater than in the general population, as reflected in Danish mortality register statistics. The suicide rate among the 106 women with possible fibromyalgia was increased 20-fold.”

If this is truly the case, what makes suicide a high probability? Oftentimes, we do not want to hear the question from our Doctor, ‘Are you depressed?’ To us, that only means that he is going to label me as depressed and not try to figure out what’s really wrong with me. Did it ever occur to you that maybe ‘I’m depressed’ because I HAVE fibromyalgia and/or CFS?

If this is the case, treatment is necessary because depression is a whole separate illness. Looking into the life of these sufferers can help those who do not suffer with this illness to understand why Judith Curren was so desperate for her painful existence to end. What could her life been like? What is your life like? What is mine like?

Have you ever thought or experienced...

- I am in pain every day of my life. There is not a day that goes by that I don’t hurt somewhere.

- I can’t sleep, or I sleep poorly.

- My spouse is calling me “lazy.”

- My friends have abandoned me because I can’t keep up with them.

- Everyone thinks I’m “crazy,” including my Doctor.

- I’m fat!-Probably because of medication and not being able to exercise due to pain.

- I can’t play with my kids; I have no energy.

- My finances are a mess because I can’t work as much, or I can’t work at all.

- Medical bills are running out of my neck!

- I’m fatigued and tired all of the time.

- I’m tired of popping 20 pills a day, and I’m not even 35/45/55 yet!

With these scenarios, is it still difficult to see why some may choose suicide as an option? According to the article Depression And Fibromyalgia by Dr. Warren Neilson, Dr. Neilson explains, “With [fibromyalgia] patients, it is normal to feel hurt and grief over the losses that have been experienced. Loss of some physical abilities, job loss, changes in relationships with others and elimination of future plans are all experiences that can precipitate grieving. We must grieve before we can accept our losses and move on emotionally. But, if we are unable to grieve and/or these feelings persist, a depressive disorder may have developed.”

These losses are the things that die in our lives. It’s as though we lose a loved one each day that we suffer. Studies have shown that fibromyalgia and chronic fatigue syndrome cannot literally kill you, but the losses experienced and the emotional effects can - if you let it.

This is why we need to fight every day and celebrate the small victories until we are able to win the immense battle.

ORIGINAL ARTICLE


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