It showed me, still painfully thin despite my best efforts to eat thousands of high fat calories a day, pale, tired, and with the telltale dry lips and skin of the borderline dehydrated. I am actually in the best shape I have been in years, and only a few weeks ago was chipping ice from the driveway, laying out the pattern for the gown my future mother-in-law would wear at my wedding in August. The snapshot shows how over-sized my sweatshirt is, and how chilled I am even though it is 70 degrees in my living room. It shows me with a saltine between my lips, that holy bread of those suffering from nausea, diarrhea, heartburn, and the more serious physical problems I live with like GERD, IBS, Gastroperesis, multiple sclerosis, fibromyalgia, and osteoarthritis.
Today, Brian, my fiance, and I were going to take the motorcycle to the NAMI NH Conference, and it would be my first ride of the year. I had my best jeans and my cute hot pink Harley Davidson T-Shirt picked out, along with a biker sweatshirt, and my leather coat. I had carefully washed the mud from clearing out the drainage trenches on each side of our driveway, and had almost decided to give them a nice shoeshine to bring that famous Harley black and silver to life. We are not rich…far from it, and they are the only boots I own, and most probably will be the last pair I ever buy. Considering a shoeshine on my boots is akin to a guy considering which tuxedo he wants to wear. To say I was looking forward to today is just about the biggest understatement you could make.
I was looking forward to it not just for the ride on Black Cherry, our beloved workhorse Roadking. I was excited and looking forward to going because I would have been able to get much needed information on mental illness issues for adults and children, perhaps get to see some of my friends from when I was a member at the ALC Peer Support Center in Conway, NH, or where I currently show up sometimes, Tri-City Co-op Peer Support Center in Rochester, NH. I was curious to see how many other people with Post Traumatic Stress Disorder, like myself, were being told that even in cases where there had been repeated traumas, the disorder was now considered to be “curable”. I was also hoping someone there would know where the actual judge’s order could be downloaded and read in the recent lawsuit by mental health consumers against the State of NH. NH now has the distinction of being the only state in New England found guilty of violating the American With Disabilities Act against an entire class of people. The Department of Mental Health and the legislators have been ordered to come up with a plan for more access to services, but I want to know how long they have to do that, and what possibility there is that I would be able to actually survive long enough to see the day I could get the proper services on some sort of consistent basis.
I didn’t ask to become a mental health consumer. I made the mistake of coming under the influence of a boy who at 17 was already an alcoholic and a prescription drug abuser, and accomplished bully who had just a year earlier pummeled a boy I knew, leaving bruises on him that lasted weeks. While junior year wasn’t too bad, by senior year I was being constantly subjected to “suggestions” about what to wear, how to style my hair, and that we should get married right after I graduated high school. This turned out to have an ulterior motive, as he was trying to get custody of a baby his ex-girlfriend had absconded to Texas to have. I went to work in a maternity store part time, leaving a great position in my Dad’s system Integration firm, so we could begin stocking up on things. Since I was already very aware that once our wedding ring went on, my birth control would vanish, I went ahead and got maternity dresses and other supplies, carefully telling worried family and friends that it was all for “the future”.
He was infuriated when my voice coach and music director convinced me that yes, my mezzo-soprano was indeed good enough to get into music school. I happily announced that Christmas my decision, and the hope I would in four years be a happily married music teacher, perhaps even at the same high school I was due to graduate from. While the argument that we had was only verbal, I will never forget the angry snarling voice denouncing ‘those idiots’. “My sister studied voice for years, and even she couldn’t go to music school. You? With two years if voice coaching, and only 4 years total of woodwinds? Stop being stupid.”
I did end up marrying him, and before our wedding day he had already gotten so furious at me in an argument that he had slammed me back into a granite rock on my parent’s property. I only escaped because after almost 10 years of abuse he finally issued an order I knew would lead to my death and I fought back. When he left the house for 24 hours to “teach me a lesson” that I couldn’t live without him, I cried for an hour. I completely believed that since he had to pick out my clothing every morning I couldn’t possibly manage without him. It took his mocking phone call, wondering if I had even managed to make a decent lunch for our small children, that something snapped. I put the shaker back kitchen chairs under every doorknob, locked every door, and never ever willingly let him into my home again.
The damage had been done. After one particularly bad night when he flashed his mistress’ handgun at me, I went home to the same bedroom I had grown up in, and one of my parents witnessed me thrashing in a nightmare and then eyes popping open, me climbing against the wall, screaming “NO!” over and over. I started at a YWCA domestic violence support group until I built up enough strength to tell a mental health professional the things he had promised he would kill me for even mentioning. I was diagnosed in early 1995 with Post Traumatic Stress Disorder, Battered Woman’s Syndrome, and Fibromyalgia. Within two years, a doctor would find the telltale misalignment of the upper part of my spine, the muscle damage, and more that gave further proof that pushing me into hard objects had not been a one time occurrence.
By that time, I lived in Massachusetts and through my second husband had good insurance. Even better, the award winning HMO had a full complement of mental health professionals, classes, and groups. Despite the fact he would continue to stalk, threaten, emotionally and institutionally abuse me until 2006, I recovered. When my second marriage ended, the services were already in place to quickly provide me mental health support. I rebuilt. When I ended up on welfare because of that divorce, universal health was near passage, but under Massachusetts Medicaid I was able to continue almost all my care uninterrupted.
When I developed Multiple Sclerosis in 2005, and had to stop working in 2006, Masshealth again provided the safety net, and again I was able to access quality care. By that time, I had enjoyed an entire career in mental health, and had become active in the mental health peer support and advocacy movements.
No one asks to develop mental illness. No one begins their day saying “I think I will have a brain dysfunction today. Maybe I will suffer a serotonin absorption issue, or perhaps I will have a hallucination.” Even my abuser did not ask to develop the severe mental illness he did, and whether or not it was due to his addiction issues, he never planned on having an injury to his back before he could even drive that started him on the path of painkiller use. At one time, NH had a passable mental health system, and had finally made stalking and other forms of domestic violence illegal and enforced by police and courts. During that time, when he assaulted a different parent at a visitation pickup, I was able to be reasonably sure not only that at minimum he would serve probation, but that he also would be ordered into treatment. He was, and at one point even publicly pointed it out on his license plate. Today, he has gone many years with no arrests, and my son reports his mental illness issues continue to be under control with his continued treatment. Along the way, I saw a close family member achieve treatment nirvana. He had both a competent psychiatrist and a capable counselor immediately after he was discharged to a partial day program, and continued to have them through each step back to independent living and a fine post-retirement career volunteering for his church.
So, from the point of view of a consumer, a retired mental health professional, a mental health advocate, a family member of a loved one with mental illness, and having cared for kids with mental illness, I had a multitude of things to gain, as well as things to share, had I been able to get to the conference on mental illness today.
So why did the webcam snapshot show me propped on the couch, my pink striped pillow fluffed behind my head lovingly by my fiance? Why the saltines, the ginger ale? On Tuesday, a new home care nurse made a mistake filling my med planner, and I took a single overdose of a single medication. After a miserable night, I opened my planner on Wednesday morning and realized something didn’t look right. My fiance and I, both disabled enough to have weekly nursing, struggled with my medication sheet to carefully remove the extra pills where she repeated the error and said a prayer to God thanking him for my guardian angel. Yesterday, with the symptoms from that mistake greatly reduced, I made the mistake of eating something not on the bland food diet too soon, and kicked the symptoms back in. Although I am not as sick today as I was, it was still impossible for me to be going out anywhere, never mind an hour and a half drive to an all day conference with breakout sessions.
One factor in her error? Her agency is only paid for a one hour visit, with an allowance to extend to 90 minutes if needed. About 1/3 of the 19 medications I take 8 times a day, not including the as needed items are psychiatric. However, the home care agency receives not one dime from the Department of Mental Health for the extra work of putting the right psychiatric medications into the correct slots in the planners, and Medicaid does not allow the agency to bill them because “that is DMH’s responsibility to pay for that.” So I spend 4 or more days recovering, miss the NAMI NH conference, lose out on all the education, information, peer support, and resources I could have gotten. The nurse, who is a good nurse, now has a medication error with complications on her record. The agency has even more paperwork to complete, as will my primary care provider, whose office I had to consult for advice on managing the symptoms.
The lawsuit has already cost the state money, and everyday the now fractured and failing system of the Department of Mental Health gets worse. Medicaid has quite simply been cut to the bone so badly that it is now causing serious harm, even early death, to people. While there are issues with methodology, with how each agency operates, the single biggest isssue is a lack of adequate funding. Those that have consistently refused to institute new revenues for the state, to raise taxes on the super wealthy in the mansions around the lake and elsewhere, and to stop the balancing of the state budget on the backs of the poor, the disabled, the widow, and the orphan will certainly have to answer to God for their actions that contributed to me being in this snapshot, sick, frustrated, and missing out on the conference.