The Black Place

IMG_1162Designing life a second time is not easy. Many people  stay angry and are openly hostile to the person who has attempted suicide. They watch you with different eyes, perhaps not knowing that you still haven’t overcome the sadness that led you toward death.

There is a paralysis that sets in during the long recovery period. Your shields are down. You feel all the energy of others emotions, it is very unpleasant.

In the person you previously thought was kind and sympathetic, you now see through them, just a couple of shades deeper, and find they have a certain smugness about them. People talk down to you, as if they feel you need to be punished for wanting to die. They tell you all the times you have disappointed them, they tell you they’re sick of your shit. They tell you all the times you have made them angry, not allowing you to answer back. There actually is no answer, because you’re so shocked by what you see  in them. In fact, we are judging each other.

They have declared themselves to be upright citizens, but I see something horribly different. It’s like I came back to the wrong world. People have no integrity, they justify their cruelty towards you. They believe you should have a life sentence of punishment, and enjoy bringing you to that black place in your mind. The black place that you can’t obliterate, it lives in you now, and you never feel safe.

 

When Chronic Illness Is Mistaken For A Drug Addiction

Medicine bottles spill out of my cupboard, and I finally decide to combine the many prescriptions into fewer containers. One reason I do this is for my own convenience, the other reason is that I have been labeled a drug addict. I will try to keep  my humor intact while writing about this (all too common) accusation  and the mistrust that ensues on the side of both the pill-popper (me) and the finger-pointer.

I must give a little background information on my illness. Having suffered numerous pains (in my spine, neck, ribs, and chest) I was not given a correct diagnosis for several years. It was only when I moved to Europe that I found help. When my doctor in Scotland told me I had Ankylosing Spondylitis, he spent the time to carefully explain what had happened in my body, and that the disease was chronic or life-long. He said there were medications which could slow down the progression of the disease and help control the pain, but there was no going back. In other words, I was stuck with the damage that had already occurred. Every word he said made such perfect sense, but I didn’t want to believe him.

I was a professional ballet dancer, and over the course of five years I had lost the ability to twist, arch, and round my back. My neck would no longer move, and I was exhausted. Many of my joints had fused together, and my ligaments had shortened and become rigid. I thought perhaps I could have some of the damage lasered away, or surgically removed, but my doctor said it would all come back. The disease  progresses because of an auto-immune reaction.

I went to the pharmacy to fill my prescriptions, and as I was not yet thirty, it came as something of a shock to be given several different bottles of pills. I had to have regular blood tests to make sure  my liver and kidneys were not being damaged, and this made me feel like a very old woman. I couldn’t wrap my mind around this new reality, and I hoped that maybe there was some mistake. The American doctors were always saying I had stress fractures that caused the pain, some suggested I was imagining the rigidity, they had not helped me at all.  I decided I would try the medicine and I quickly had positive results. I could do some “normal people” things like sitting through a movie, blow drying my hair, and walking without a limp. There were still problems and pain, but less tears for sure.

I want to make the point that nobody wants to  be on medication for life. You wonder why and how this could have happened, you feel like a patient. How could you go from being a healthy twenty something to a senior citizen within just a few years? I suppose my coping skills are less than stellar.

So, I take four of one pill a day, two of another, one at night, and one for the really bad times as needed. During this time, I met a young woman with Addison’s disease, she was quite good-humored about the whole medicine thing, and I decided I must buck up and find the bright side of the situation. I did feel better, but I was heartbroken that my body was forever changed from a flexible dancer into a marble, unyielding statue.

When I moved back to America a couple of years later, I had to deal with the more forward nature of our culture. Among friends and family, we think nothing of opening a cupboard in their house to search for a snack or get a glass. This never seemed to be abnormal or rude, and only became a problem now that I had drugs. Curiosity was aroused by the various boxes and bottles situated in a formidable pile behind the spices.

We all like to put in our two cents, offer solutions to problems, and we regard this as a helpful duty. I listen. I often look at them with wide-eyed innocence while inside I feel like I am a thousand years old. All of their doubts are the same ones  I experienced when first diagnosed and still in denial.  My initial reaction is that I am far too worn-out  to have to explain, apologise, or argue. I have to tolerate being  lectured on things (both true and false) that I have heard about  time and again:

  • These drugs can cause permanent liver/kidney damage, ulcers, weight gain and fatigue. (So pass the mashed potatoes)
  • There are diets that can totally cure your illness.
  • Those doctors in Europe don’t know what they’re talking about, I’ve never heard of a disease called Ankylosing Spondylitis.
  • If you still have pain while taking all that medicine, why not just stop, it must not be working?

Sadly, I could go on for hours.img_0151

Here is where I truly start my adventure with a so-called drug addiction.

In a heroic quest to save me from all of my shortcomings, someone made a list of all the medications in my possession. They researched each one carefully, met with their experts, and strategized how I may best be helped.

Around this time, I was in a bad marriage, had only recently finished a year of treatment for breast cancer, and in a span of seven months, had a hip replacement, was threatened with job loss, dislocated the hip replacement twice while at work, sued by the company I worked for, had a second hip replacement to fix an impingement problem which would cause multiple dislocations  if left unrepaired, and feeling desperate physical and emotional pain so much so that I didn’t want to live another day. I had never felt such deep sorrow, but the support I received was often unhelpful or made me worse. One example was people implying I dislocated the hip replacement by not following the doctors orders. Nothing could have been further from the truth, and I was relieved when a new doctor took an x-ray showing the impingement, and told me that no one could possibly dislocate a hip replacement the way mine went unless they were in a high-speed car accident. My first hip replacement was posterior, and the dislocations were anterior.

I have one beautiful, smart, nice daughter who is the light of my life. I have a close relationship with my mother and stepfather. Under normal circumstances, I would have been able to cope, but too many things were happening and the therapist I had started to see left, taking a job an hour away.

I’m really back-tracking here. I’m still stuck in the anguish of all that happened, and on certain days, these feelings are triggered and leave me sobbing and shaken. Today is one of those days. I don’t know exactly what triggers these memories, but I was diagnosed two weeks ago with Rocky Mountain Spotted Fever with a co-infection of Lyme disease. If you can still make sense of what I’m writing, Kudos!

I will skip ahead to the days after my attempted suicide, which came just a few months after my second surgery, and a new injury in to my knee. I held out as long as I could with such debilitating sadness, I wanted my daughter to have a memorable sixteenth birthday, and went to Tiffany’s to find her a beautiful ring. How bad can life be when you feel you have to leave in order for everyone else’s life to be better? For the people who are dumb enough to insist that suicide is selfish, why are you reading this anyway? You cannot possibly have empathy if you haven’t experienced the horror of such thoughts, so You are not really entitled to an opinion.

It was decided by various people that I was a drug addict, after all, I had taken an overdose of drugs. I must be sent to a drug rehab place. All of my arthritis medicines, my anti-depressant, my fibromyalgia pills, migraine pills, etc., were taken away. Some of my medicine would be given to me each night, and the lidoderm patch I used on my lower back was to be applied and removed by a nurse.

I did very much like everyone at the rehab place, and I had a good experience, good food, comfortable lodgings, etc. The complaints I have are related to my own body’s pain. I was used to taking my anti-inflammatory medicine morning and night. Several times a day (for the past thirty years,) I have needed to lie down to combat exhaustion and take pressure off of my spine and neck.  This was just not possible, you had to attend and participate from morning to night. They later explained to me that insurance companies had insisted  the programs must run seven days a week from 8 a.m. to 8 p.m. I’m sure the schedule was hard on them, also.

I was not  going back to the house I had lived in. Divorce proceedings were started, and I didn’t have a job anymore. I wasn’t fully myself, my thoughts were only about my daughter, and how I must have hurt her. I existed somewhere in the top of my head, trying to buffer everything I observed. Life was going to be very different this time.

It wasn’t until I went back to the house to pack things up that reality finally dawned. When I went into the bathroom or kitchen, someone followed me. I didn’t think too much about it, but began to worry that they were annoyed I had so many little  items to pack, make-up, brushes, lotions and potions.  All of my pill bottles had been lined up in the front of the cupboard and as I readied a box to pack them  a family member stopped me. “You’re not taking those drugs. We have all sacrificed a lot for you to get therapy for your drug problem, and you are not going to go back on all that stuff.”  I was perplexed. Why would anyone but my own doctor have control over how I treated my arthritis? My heart moved up into my throat and I experienced a terrible, familiar fear. My own lack of power and money meant I was to be trapped and controlled. Any decisions I made would be questioned, I would have to apologise and explain myself again and again. I was told that any pain I had I deserved, because I had chosen to be a dancer, and everyone knows that causes arthritis. No! I don’t suffer from that type of arthritis! I started to explain with different words, how could I make them understand. Well, you can’t teach people who believe they know more than everyone else. They told me I wasn’t being honest with myself and they would find me a new doctor to set me straight. Of course, no one apologized when the new doctor prescribed all of the same medications. All that mattered to them was that I feel ashamed of myself for having so many problems. abstractwoman

The next game was for them to control when and how much of my medicine I took. If I was taking two anti-inflammatories a day, that was too much. “Why not take Advil? That’s what I do.” If I took just one a day, (usually due to an upset stomach) they insist I’m not taking care of myself. I say that “over the past thirty years that I have taken these medications, there have been several times that I had to cut back for a week or two, not to ruin their lives, but to protect myself from additional health problems.”

Writing this hasn’t made me feel better about things. I guess because the problem is ongoing. I try to surrender gracefully, to submit to the control they need to exert, but it has become harder over time for me to pretend it is okay. I have to stop here and try to escape from reality. It’s too brutal for me.

 

 

 

 

 

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People wait to pounce. The strongest among us have to falter a bit, and the vicious are waiting in the wings. I felt so frightened and concerned when seeing Hillary after the election, she was shattered. Those weeks when she suffered from pneumonia but still soldiered on were crushing to watch. As she collapsed from exhaustion and had to cancel several events, the vicious came forward to ridicule and demean. I remember seeing videos of her  where again and again she was shown to be unfit, not strong enough, and made fun of for having  quirks after her head injury. Still, she went on with her clear gaze never showing vulnerability. Her intelligence always so visible in her face showed that she could run a country no matter what physical condition she was in. Her focus and passion allowed her to push through without a tear in sight.

I’m so intrigued by her ability to discount all of the horrible things people said about her. I guess she simply wasn’t interested. What a gift. My own experience with illness,  exhaustion, and ridicule led me to attempt suicide. I cannot go back and  change anything, but I can work to gather my strength, push onward, and try to ignore human  nature.

Hillary is such an inspiration, and a great example of leadership. Perhaps, some of those who so despised her are finally having second thoughts.

Hillary The Workhorse

Chronic Pain and Avoidance

Making it through the day with an overactive immune system is exhausting. You are trapped in a body that seems hard-wired to misbehave. You look and feel very different than you once were. You find many small things to celebrate. You purchase colorful new shoes because your feet and ankles feel better, you laugh at inane jokes just to feel alive. You hide your pain as much as possible so you can still seem fun and lively, this takes a lot of effort. Normalcy is an adopted attitude.

When you are in your twenties and diagnosed with a lifelong disease, it is a shock that is very difficult to accept. You have medicine bottles everywhere and are told to take this pill four times a day, the next pills you take eight of once a week, one pill morning and night, and another only at night. Disbelief sets in and you are sure that you are not ill anymore. You stop the medicine and the torture starts anew.

Many days it feels like a flu bug. You want to have a quiet day in bed and not talk, listen, or explain yourself. It is futile; I don’t know if people really can’t understand how I feel or are just intentionally horrible. Some people, after all, are just contrary by nature. Here are a few examples of the insensitive remarks I try to dismiss on a daily basis:

  • “You really should get off of all that medicine and just exercise.”
  • “If you would just stop eating sugar, nightshade foods, gluten, dairy, etc, your problems would be solved.”
  • “You look exhausted, what happened to you?”
  • “You must not have a very good doctor if you don’t feel better.”
  • “Are you sure you aren’t just imagining some of this?”
  • “I don’t understand how pain can make you tired.”
  • “You must not be taking your medicine properly. If you were, you would be better.”
  • “Why do you smile so much if you don’t feel well?”
  • “My friend has the same illness, he never seems tired.”
  • “You were fine yesterday, what’s your problem? Oh wait, I don’t even want to hear it.”
  • “I’ve never heard that chronic pain affects your personality, why won’t you argue back?”
  • “Oh, it doesn’t hurt, stop exaggerating, you are a huge drama queen.”
  • “I have pain too, you know.”
  • “Stop making that sad face.”
  • “Wouldn’t we all like to stay in bed relaxing?”
  • “You just refuse to take care of yourself.”
  • If I felt like you do, I would be at the doctor every day, why aren’t you proactive?”
  • “If you would just put some concealer under your eyes you would look a lot better.”
  • “You used to bounce off the walls with energy, are you depressed?”
  • “You’re not a fighter.”
  • “You looked so happy just two hours ago, maybe you have low blood sugar.”
  • “We are all tired, you have to make yourself do more things.”
  • “My grandmother can do more than you.”

It feels like you have a secret. You do, but only you can know how debilitating a painful disease is. You cannot share the secret, you will only be misunderstood or labeled difficult. I do wonder why I have to constantly justify myself. It is such a waste of energy. I find more and more that I am happiest alone. My own thoughts are usually pleasant and clear, although I often drift in and out of a dream world where I am my old self.

It is a strange thing to find yourself worn down by another persons energy. At one time, I gained energy from others liveliness. Now, I feel that I must ramp up my own strength just to buffer the effects from their unconscious hyperactivity. People hustle and

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bustle around me.  They push me to move faster with their grocery carts, or to rush out of a movie after sitting for two hours. They simply cannot understand why I move the way I do. I certainly don’t have the patience to explain. Why must I offer an explanation every time I have a setback. I don’t owe this to anyone. I want to be alone.

 

The Toppers

People like to compete about the strangest things today. They are smug in their ways, calling themselves Type A personalities, or Alphas. I see a shallow value system among this group. How does an illness spark competition against others suffering from the same disease? Travel to faraway countries and different continents brings out the worst in these argumentative people. When it turns to bullying, I turn my back, and try not to absorb the poisonous darts being thrown every which way.

People justify their horrendous behavior, never caring that they may have really hurt the person who was (at that particular time) perhaps very vulnerable. Breast cancer has become a source of “topping”; a way to feel like you are a warrior. Initially, I liked the idea of battling cancer being akin to that of a warrior rather than a victim of the disease, but it has led many women to fight one another. They fight or compete about who had the worst experience, the longest treatment, they take over discussion boards, and often have to start new ones in order to continue their fight. It almost feels as though if you didn’t lose your hair and toenails, you must cower in their mighty presence, and offer them some form of reward for going through something worse  than everyone else.

Many times, cancer is related or a more likely diagnosis when you have certain autoimmune issues. Meaning, you may have already suffered for thirty years with a debilitating illness before the cancer comes along for the ride. Too bad these Toppers can’t see the big picture. They see themselves as more deserving somehow, but they are really just sickening, angry people.

I lived abroad for five years, I had always wanted to do this. I never realized that others were angered by this, and how much it provoked their competitiveness. Questions I am asked have nothing to do with whether or not I enjoyed it, instead, they present like this:

How old were you the first time you went to Europe? Haha, I went before you.

Did you stay at The Ritz? I did, I stayed in all of the best hotels.

How can one converse with someone like this? I am exhausted when I finally drag myself out of their clutches. I let them know that they have topped any experience I may have had, and I hope to never see them again.

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Ankylosing Spondylitis

 

I have suffered with a systemic illness for thirty years. It is called Ankylosing Spondylitis. To  make it easier for those who are rude about it, I say it is Rheumatoid Arthritis.

As a child on a gymnastics team, many teased that I should join the circus as a contortionist. I was the winner of many flexibility contests, and was constantly cartwheeling instead of walking. To lose those abilities came as a shock.  It was not only extremely painful when the inflammation of my spine and ligaments occurred, it was frightening. I retained much of the flexibility in my shoulders and hamstrings, but my neck, ribs, and spine were indescribably sore. No longer a gymnast, I had switched to ballet before I started high school.  To be a dancer and go through a long, undiagnosed illness was less than ideal, but I was lucky to have been so active in a field that demanded good posture. Many with this illness end up permanently stooped over..

When I was 35, I took a job teaching ballet in Virginia. I had no doubts about my teaching ability, I had been trained by more than one teacher who used a cane. For this reason, and the fact that most people would react to my unmoving spine with sympathy, I was doubly surprised to end up being bullied for having such a condition. Idiocy!!

I don’t mind jokes, for instance, on days I could hardly turn my head, there were always one or two dancers who made light of it in a funny way. I remind them that none of us is guaranteed good health, and to enjoy every moment of their physical well-being. Some jokes are to be expected when you are a teacher, it happens to everyone. The group I mostly worked with were sixteen to twenty years of age. Gorgeous, effervescent, and delightful.

The  small company of dancers between 22 and 35 years of age turned out to be the bitterest and most insulting. It was a surprise to me that this culture of negativity existed and thrived. They lacked ambition, yet bemoaned being trapped with one another. I had never met so many unsmiling dancers, they hated the daily ballet class, and rolled their eyes at one another. As ballet is a visual art, most dancers learn to hide their pain or unhappiness, it is not what the audience, (or anyone) wants to see.

Most of my instructors didn’t make an announcement about why they had a cane, or what ailments they had, which is why I didn’t go in to class, sit them down, and go into great detail about my life. My job was to teach class, period.

 A  young man from Russia decided to give me a hard time, he asked a few questions about what kind of injury I suffered.  When I gave him an explanation he said “That doesn’t make sense, are you making that up?”  Having been arthritic for many years, I had become quite dismissive of those who felt best when belittling others. He was not the only one who behaved this way. There was a young woman who had recently been diagnosed with a chronic illness, and she suffered from Raynaud’s syndrome which turned her hands blue. I listened to rude, condescending jokes about her and felt like I would cry. Hoping to show my support, I commiserated with her, explaining I also was diagnosed at an early age with an autoimmune disorder. When I said Ankylosing Spondylitis, she looked at me and said “None of us have ever heard of that, are you sure that’s a thing?”

Sometimes, when dealing with ignorance, I have an easy time letting it go. I didn’t particularly care what they thought about me, I was just there to teach a good class. Thankfully, talking is looked down upon in the ballet studio.

 

 

 

TODAY

Today….. I am just weeks away from my 53rd birthday. To a large extent, this blog is for me. To gather thoughts, accept a new reality, figure out how best to remain on planet earth a while longer, and sift through some of life’s tougher times.  I will also share this with my mother who has a keen sense of what others are feeling.

I have been sick for more than half of my life. I have suffered through crushing pain, discomfort that causes sweats, nausea, hair loss, muscle spasms, muscle atrophy, and worst of all-devastating, life destroying fatigue. My body had many nagging symptoms of a chronic illness from the time I was seventeen. These problems would come and go, so I never realized they were part of just one disease.

I visited all kinds of doctors, mostly orthopaedic surgeons. Burning, bruising chest pain sent me to a cardiologist at age 24. He sent me to Cleveland Clinic’s sports medicine department for a cortisone shot. I was told I had costochondritis. I was happy to have one problem solved, for I had been unable to laugh or sneeze without aggravating this particular ache. It sounded quite basic, inflammation of the cartilage that connects ribs to the chest bone. The wish bone, actually.

I have had many cortisone injections, starting at nineteen in my S.I. joints, and more recently in my hip, knee, hand, head, and elbow. For a long time, I tried to treat my pain, but was not successful. I was taking sixty aspirin a week for several months and this led to a different set of problems which sent me to another doctor. By this time, I had no appetite, energy, or even the strength to drive a car. It took all of my energy to open the kitchen cupboard to get a glass or plate. When I stood in front of the stove to cook I felt sharp pain in my heels and lower back. It wasn’t much better trying to sit down because my sit bones felt bruised, and my body seemed to freeze in the sitting position. This became so problematic because my muscles seemed to actually become short and rigid and when I tried to stand up, I had severe muscle spasms around my ribs. It is such a hard thing, planning each move you make. There is the sense of dread, knowing the pain to come, never mind how awkward and ridiculous you look.

It kills me to remember my most excruciating year, I was twenty-five. I didn’t look, feel, or even believe I was this age; my hair seemed to have lost pigment, it was a drab grayish brown, dry, and falling out. I was tested for many things (after being questioned whether I was using street drugs, or not) including parasites, aids, and who knows what else.  The diagnosis was anemia, and malnutrition. Most of what I ate went right through me in the form of diarrhea. I had to stop taking aspirin which meant I had to move back home to be taken care of by my parents. My mother had to help me turn over in bed, and she experimented with soft pillows under my legs and lower back.

I was at once, an old woman and a child. I needed help the way a child might, but my fussy complaints were like those of an 85-year-old. I guess chronic illness does this. Perhaps, it was more devastating because of the career I had chosen, and the fact that I had been a gymnast, diver, and dancer almost my entire life. It is hard to swallow the fact that you are somehow not yourself anymore. Harder still, to have doctors tell you they can find nothing wrong.

These words seem to be a lot of rambling nonsense, but it helps me to digest and mourn the loss of who I was. It may be impossible for me to ever put things in order. I can talk about my career separately, as well as the pain caused by people’s disbelief and eventual ridicule when I finally knew what was happening to my body.

Another chance

I didn’t think I would still be here. I couldn’t have guessed that all of my relationships would change so much. Of course, I have lost many friends, they cannot understand the darkness I experienced. For this reason, I am still not fully engaged in life. I am halfway here.

I can’t quite bear reality.  I focus my gaze inward when I’m in a public place, so I won’t have to see the disapproval stamped on so many faces.