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The month of July thus far

July 14, 2012

This song by Garbage has been pervading my dreams, a real earworm that I can’t get rid of. It’s this chorus that I keep hearing:

A stroke of luck or a gift from God?
The hand of fate or devil’s claws?
From below or saints above?
You came to me

Here comes the cold again
I feel it closing in
It’s falling down and
All around me falling

It’s as if I’m singing to the CPS itself  Was my stroke, and the CPS that followed right upon it, a stroke of luck, in that it has given me a purpose, one which I would never have found without it? Was it the hand of fate, or devil’s claws, that ripped a hole in my thalamus? that cold that is always falling around me, falling into me, is burning as well, is tingling like an electrical shock, is crushing like grief. Too often, like this month, it has all been closing in too much, like the garbage-cruncher in “Star Wars (no. 1 or no 4, depending on what version you believe in). If only there was some R2D2 out there that could shut it down. But it is obvious to me, and to all the other sufferers/survivors/endurers/patients of CPS, that we have to shut down the pain ourselves.

This month has been both  exhilarating and gut-kicking, head-smashing tragic. On July 3, I met with the New Jersey Center for Non-Profits. Our Charter Committee to form the Central Pain Syndrome Foundation had collected enough money in donations from the members of the CPS Alliance yahoogroup that we were able to become members of the Center, and become eligible for all the benefits and assistance that they provide to new non-profit start-ups. More importantly, though, we were able to purchase their Toolkit of Legal Assistance Services for newly-forming non-profits. It includes guidance on how to incorporate, how to write your by-laws, how to solicit the correct people to serve on your Board of Trustees, and how to complete the “Application for Recognition of Exemption Under Section 501(c)(3) of the Internal Revenue Code.” , known as Form1023. (And a honking great application it is, too – I got it it in the mail Thursday.) But once we have incorporated as a non-profit in the State of New Jersey, we can actually begin to operate as a full patient advocacy organization.

I met with Debbie Duncan, the director of the Center, and her staff assistant, Erik, and they couldn’t have been nicer or more helpful – in spite of it being 4 p.m. on the afternoon before the July 4 holiday. They told me that they rarely saw such a professional preparation for a non-profit application. More than that, they thought that our vision of a national organization that could help the perhaps one and a half million people with CPS in this country was not only achievable, but almost certain to be tremendously successful – especially since we are the first such group in the nation. We have a compelling, if terrifying cause, and a remarkable story, in that it is the *patients* who have realized the extent of this problem, and are forming their own group to combat it. I left that meeting on a cloud, which certainly carried over through the holiday. On July 5, I notified all the members of the team, and we all were practically giddy

The reason for our giddiness is that we are so close to actually incorporating. We have done a great deal of prep work, and must do even more work once we incorporate, but at least we will be a legitimate organization. We can begin to apply for various patient education grants given by pharmaceutical companies and philanthropic institutions. We can approach people who would believe in our mission, and get them to serve on the Board. We can begin to create the budget for the administration of a group that wants to reach every doctor in the nation to teach them about CPS (if they don’t already know.) Even more importantly, we want to reach the general population, because we *know* how many people are suffering with this, and don’t even know its name. We want to be able to start to raise money to fund research studies that aren’t beholden to for-profit medical and pharmaceutical firms. There is simply so much to do!

So on Thursday I was flying high psychologically. Then my husband came down from his office about 5 pm, and took me in his arms, very solemnly. “I just got a call from your aunt,” he said. “She saw your father’s obituary in the newspaper. He died Tuesday.”

It was as if someone had delivered a tremendous blow to my whole body. My brain was stunned; I couldn’t think, couldn’t process it.  It seemed impossible. If my father had died, surely we, his children, would have been told? I went to the Star-Ledger website, and looked up the obituaries. There he was. I hadn’t really believed it until I read it in print. .There was my father’s obituary. – filled with incorrect information about his military service, and obliterating his entire life prior to his second marriage.

My father had died *two days before*, and neither his wife nor her son had bothered to notify us, his five adult children, or his first wife. I was filled with grief, with anger, with wonder and confusion, with a sense of hopelessness and a sense of absolute misery. My Daddy had died, and no one had told us! It turned out that he had died at home, and been immediately cremated. His wife was too much of a wreck to hold any sort of service, her son said, when my brother spoke to him. I had so many questions that had no answers. We found out some of those answers in the week following, and it became even more clear that he died in the most abject condition. He was covered with bedsores, had shrunk down to less than 80 pounds, had had old wounds from his time in the Army (over 60 years ago) reopen, and had lost all mental comprehension. His wife had tried to care for him in his last few months without any help, and had obviously been incapable. At the same time, she and her son had rejected any form of the frequently offered assistance from us, going so far as to have her lawyer send a “Cease and Desist” letter to me, forbidding me to call them on the phone or come to their house, after I asked them too often about what treatment he was receiving, what medications he was on, and what doctors he was seeing.

For all the grave problems that I had with my father, I loved him deeply. During the time I lived with him, he still owned his own pharmacy, and I worked with him from about the age of five on to the age of 21, when I left home.. I can still remember how proud I felt when he let me restock the candy display that first Sunday “working” when I was five, and when gave me a dime as “pay.” so that I could use the Coke machine on the second floor of the building our pharmacy was attached to. I was proud of “Mowder”s Pharmacy..” I was extremely proud of my father. We kids didn’t get to see him much; he worked 9 to 9 on weekdays, 9 to 6 on Saturdays, and 9 to 1 on Sundays. So working at the pharmacy with him was the way that I got to see him, aside from the drives to school in the morning.

I was aware of the difficulties in my parent’s marriage from almost the beginning of my life. I could hear them fighting at night, when they though t we were asleep. My mother talked a lot about it to me; I probably heard far too much about intimate marriage problems for a child, but she told me I was “mature for my age,” and, besides, who else did she have to talk to? It wasn’t until I was 10 or so that  realized that my father had a severe problem with prescription drugs. He was addicted to both Dexedrine and Nembutal, (extremely easy for a pharmacist to obtain) and couldn’t get up without one, or go to sleep without the other. They made him dangerously unstable. He would lose his temper at the smallest and oddest things, and lash out violently. Because of that, I preferred him at the pharmacy, where he was usually friendly, even jolly, and competent. It was at home that you could never tell what was going to happen – like the Sunday afternoon when I was six, and he kicked me in the stomach, sending me across the room to hit the opposite wall, because I’d jumped on the bed to wake him from his nap for dinner. He’d been addicted to these medications ever since he’d joined the Army when he saw 17, and been sent to Korea. He served in the Medics, and his superiors *ordered* the lower ranks to take those pills, so that they could work the 24-hour shifts they were given.

In the 1980s, after my father lost the pharmacy, and then our house, and then the family had spun away from him, he ended up cleaning up. He kicked the pills; he even became a vegetarian. His second wife lived with a very different man than the one that had raised us. His second wife only knew *that* man, and refused to hear an evil word spoken against him. So she never truly understood why all five of his children were so estranged from him.She is Chinese, and she and her son had been ardent Maoists, who left China after the fall of the Gang of Four. She had been a doctor, and her son had been in the Red Guard, so they were very suspicious of Americans. But my father had listened to her stories about China, drawn her out, taught her English. They got married within weeks of his divorce from my mother, and we never even found out about it for 20 years! They lived a very secretive, private life, which he did not divulge to us. He never really made much of an effort to see us, either. We would make plans for family get-togethers, and he would bug out at the last minute.  There were other things that were even more painful, but I don’t want to talk about them now. I’ve probably said too much, when this is a blog about CPS.

All I know is that he was the person that my mother listened to when he said, “There’s no need to call the doctor,” or “You’re just being hysterical,” when she wanted to call an ambulance, back in 1956 when I was dying of croup. He was an intelligent man, but he didn’t know everything. But he would get very angry at anyone who questioned him or his judgments. Sometimes his anger seemed to be worse than the consequences, even if the consequences were foreclosure (which we faced twice before he finally lost the house.). My mother didn’t have the strength to stand up to him. His second wife followed what she said were his firm instructions: “No doctors! No ambulances! No outside help!” If this is true, then he died as he wanted to.

His death, and the manner of it, is just so painful for me, who loved him so, and tried to help him in whatever way I could.  It would just be such a relief if my whole body and spirit didn’t ache so much.

So I have been incredibly lucky that the CPSF is on its way towards being born. Trish Hughes, one of our team who is a lawyer in Missouri, wrote out our version of the Papers of Incorporation based on the sample in the CFNP Toolkit. We had a CPSF board meeting on Thursday, and formally approved both the papers, as well as the Corporate Officers and the Registered Agent. I emailed a copy to the lawyer who handles these matters for the CFNP. As soon as she approved them, we send them to the NJ Department of Treasury. As soon as we get the paper back, we are officially the Central Pain Syndrome Foundation, Inc.

Then, World, you will hear from us!

We won’t lose any time filling out the Federal application, either. Trish just sent us an email this evening with our proposed by-laws attached, based on the sample that was included in the Toolkit. That woman is a marvel!

So tonight, I am teary-eyed, thinking about my father, and because the NJ 95-plus heat and humidity has made the muscles on my stroked side seize up like one massive charley horse, from my left shoulder to my left ankle. Theses things *hurt,* and there is nothing on Earth that can change that – no pill, no drink, no meditation or music or even embrace. All my life, I had a fantasy that one day, my father would tell me what a beloved and wonderful daughter I was, that he knew how hard I worked, and how hard I tried, and how much I cared. I had that fantasy until I saw him back in 2010, and realized just how far advanced his Alzheimer’s had become.  But the dream didn’t die until he did. It was a child’s hope, yet here I am, a grown-up, crying because it has died.

So now it is time for a more grown-up hope, one which I can help to bring to fruition. The hope is that I can help to cure my *own* pain, as well as that of millions more who suffer, alone and with no hope.

But goodbye, Daddy. I love you.

On the back of this photo, my mother had written: Lou goes for a ride on Daddy. “The best fun!”

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4 Comments leave one →
  1. July 15, 2012 10:38 AM

    MY DEAR FRIEND LOUISE, THE STORY OF YOUR LIFE IS SHOCKING. I FEEL DEEP SYMPATHY FOR YOU, MORE ADMIRATION THAN EVER, BECAUSE YOU BECAME THE LOUISE WE KNOW: CAPABLE, INTELLIGENT AND BEAUTIFUL AT THE SAME TIME. IN YOUR THOUGTS ABOUT YOUR FATHER THERE WILL ALWAYS BE BITTERNESS TINGED WITH THE SADNESS AND THAT, ALAS, WILL EVENTUALLY MAKE IT MUCH EASIER FOR YOU TO DEAL WITH HIS DEATH. HIS LIFE WILL ALWAYS INTERFERE WITH THE SADNESS ABOUT HIS PASSING IN YOUR THOUGHTS. – BACK TO NORMAL AGAIN. WHAT IS NORMAL? AS LONG AS YOUR MIND IS KEPT BUSY WITH HELPING US, SERVING A GREAT PURPOSE, IT WILL KEEP YOUR PAIN IN CHECK. I KNOW, BECAUSE THAT IS THE WAY I HANDLE MY PAIN: I WITHDRAW INTO MY BEDROOM, WHERE MY COMPUTER IS, BECAUSE IT IS QUIET HERE. I WRITE – I DON’T HEAR THE VOICE. I LIVE WITH SOMEONE SIMILAR IN TEMPERAMENT TO YOUR FATHER – NO ALCOHOL, NO DRUGS, NO COMPLIMENTS – NO NEED FOR THAT – IT COMES FROM WITHIN. SILENCE PLEASE – BECAUSE I SHARE THE MAIL THAT COMES IN. THAT’S THE WAY IT IS.
    WITH SYMPATHY AND LOVE, URSULA
    BUT AGAIN: YOU ARE A STRONG PERSON, AND I REALIZE NOW THAT I AM STRONG TOO. TO BEAR UP WITHOUT FALLING APART IS A TRUE GIFT FROM GOD. YOU HAVE COME SO FAR, AND REAL SUCCESS IS WRITTEN INTO THE STORY OF YOUR LIFE.

    • July 15, 2012 12:32 PM

      Ursula,

      You know how much I admire *you*. The story of *your* life is truly the shocking one. Everything that you say about mine, and my reactions to it, cshuld be a mirror to you. My parents were adults, living in a time of plenty, with as many gifts as Americans could possess at that time. The choices that they made, the consequences of those choices, and their often ignoble responses to those consequences, are all of a totally different scale, by many factors, as opposed to your family, who lost practically everything to war. You have transmuted all that suffering into poetry that conveys the deep truths of one person’s experiences to all her readers. In that regard, you are truly the “Poet of CPS.”

      One thing that my early life did drive into me is that children are not responsible for the situation into which they are born. There should be fair and non-abusive methods for them to escape what may be a horrible situation – whether through education, public clubs and groups, or even just concerned relatives and friends who actually *see* them as full, intelligent (if unknowing) people, rather than just as objects. It is the same for us as CPS patients. We are in an “abusive relationship” that we did not chose. There is no guilt or shame that should accrue to us, just as there should be none to a child born into a dysfunctional or poor family. Perhaps it was my birth order, the eldest of five, that made me want to protect my siblings and “fix” situations to the extent I could. Most of my siblings survived our childhood as fully functioning, highly employed, adults. It is my sister Marge, who was once my best friend, has been so damaged by her past that she may never recover if she does not seek out help (which she views as a weakness.) But her story is that she is also the victim of 9/11 – another story altogether.

      But now is he time for me to help myself, to help you, to help all of us who carry this burden of CPS. We have struggled alone long enough. We have a plan, it is solid, we know what we are going to do. Hopefully other CPSA members who are able will join us as the CPSF grows. We will now longer be the scared, aching children of the medical profession, waiting for some kindly adult to notice us and help us, or for some government program to provide an escape (as college financial aid did for me.) We will be the saviors that we have been waiting for all these years.

  2. Alison Martin permalink
    July 15, 2012 12:35 PM

    Dear Louise, So sorry to hear about your father and all the sadness and conflicting feelings you are evidently suffering. Families are such complicated entities and it seems so unfair that you have had to deal with all these things in addition to your central pain. One thing to be thankful for is that you heard the news from your husband and were in his arms at the time – it was the same for me 20 years again when my father passed away very suddenly. Peter was the one who held me in his arms and stopped me falling when I collapsed with shock. Your husband sounds like a good man and I hope he will support you through all the emotional turmoil you must be suffering right now. We too have to deal with the dual impact of Peter’s dysfunctional family – apart from his pain, we have suffered a great deal over the years as a result of his mother’s very difficult personality. She too has Alzheimer’s and this, combined with her selfishness, adds to our problems now
    So sorry to hear about the heat in NJ and its effect on your pain. Peter suffers similarly in hot weather which is why he is grateful for the exceptionally cool and damp summer we are having this year. Apparently your freak weather and ours is all due to the “jetstream” being in the wrong place this year and it is due to shift shortly – so hope you will get some respite soon.
    Again thank you for all your hard work and all that you have achieved – the world needs more people like you!
    With love and admiration. Alison.

  3. MARY Simpson permalink
    July 15, 2012 10:48 PM

    EACH AND EVERY MOMENT IN OUR PAST HAS SOMETHING TO DO WITH THE PERSON WE ARE IN THE “NOW”. I ADMIRE YOU EVEN MORE LOUISE …IF THAT IS POSSIBLE… MAY YOU BE AT PEACE WITH THE SAD LOSS OF THE DAD YOU LOVED. BIG TEARFUL HUG. LOVE MARY

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