Scleroderma changed my body, I believed accepting these changes, meant I was accepting defeat. I was scared of what would happen once I believed these changes were happening. What then? But the changes happened no matter what I belived. I fought acceptance. My brain answered this fight with depression. I stopped eating. I didn’t even realized I had stopped eating. I would feel hunger and allow myself to feel it and push it aside because it eventually went away. The hunger pains distracted me from my body and I learned to control them. That was pain I could set aside. Pain that I could stop. Pain I could control was just the fix a control freak like me thought I needed. It wasn’t until during a trip to the Museum of National History in Chicago, when I climbed on a scale fully clothed, saw the needle stop at 96 lbs and noticed a problem. But like my hunger pain, I pushed my weight problem aside.
That did not last. I couldn’t bend my wrists. My arms stopped swinging when I walked and my elbows remained bent. My once beautiful hands were replaced by curled up fists. I wanted to extend my fingers with ease and unconsciously talk with my hands. I longed to paint my fingernails a funky color and wiggle them in delight.
I had firmly rooted my view in denial and once I opened my eyes, it was so much to take in. I was overwhelmed. Eventually, I stopped leaving the house alone. I avoided friends and family. I missed baby showers, birthdays and holidays. I would go to the store with my ex-husband but remain in the car while he would shop. He knew I wasn’t eating. I wasn’t consciously starving myself, I would just take a few bites of a meal, play with my food a bit and then clear my plate when whoever was at the table finished eating. Eventually, my ex-husband would sit at the table until I would finish everything on my plate, but he could only do that one meal a day. At the time, he worked nights. While he was at work, I would try doing things around the house, but I would give in to pain and what I can only call sorrow. He often came home to find what used to be his wife curled up on the bed under the covers. A lump, illuminated by the television and beneath the covers and dancing lights my only thought was, “Please, make it stop.”
Little did I know at the time, I was making it stop by giving up. I don’t remember what got me in the car the day I drove myself to the psychology department at the San Diego Veteran’s Hospital. It was over 12 years ago. I had made that drive countless times from Temecula to La Jolla, it is all a blur. I just remember waiting to be seen, the feel of the hunger pains, feelings of madness and confusion, the walk from the elevator to the office window, the pattern on the chair cushions, a large screen TV with a chyron crawl that seemed so new to me. It was 2000. Don’t ask me what month. I was called back through the front window. A nurse met me and took me to a small room. I sat in chair while the nurse struggled to get a blood pressure cuff closed around my tiny arm. He weighed me and asked me if I felt faint. I remember carpet with maroon tones that was frayed when it met newly painted walls.
Back to the waiting room, chairs, TV, men sitting down and then leaving. There were no other females. Then I heard my name, “Mr. Vasquez?”
I got up slowly to an apology I had become accustomed to hearing. Being called “Mr” at the VA was a normal occurrence at that time. I was brought into a larger room with two psychiatrists. They explained to me there was a lot of walk-ins and apologized for not seeing me in an office. I looked around and saw what looked like some kind of classroom. I had been seated in a wooden chair next to a a table. One doctor next to me, the other on the other side of the table. In the middle of us on the table table lay my thick medical record and a clip board with a copy of a depression test I forgot I had taken while waiting.
One of the psychiatrists explained his job was to assess if I was a danger to myself or others. I knew the routine, I had done similar assessments in practice, but this time, I was the real patient. I was no client or student in a fishbowl exercise in psychology class. There was something wrong with my head and I felt it. The only way I know how describe it now is my head felt disconnected from my body because my body would not do what I wanted t to do.
I don’t remember the doctor’s first question. I just remember my reply, “Please make it stop.”
Then the conversation continued something like this:
“Do you want to hurt yourself or others, Karen?”
“Please, make it stop.”
“Do you think about dying?”
“Just make it stop, please.”
“Karen, do you want to die?”
“No, just make it stop.”
“Make what stop?”
“Scleroderma. Make it stop. Please make it stop.”
And then I felt a tug in the back of my throat and started sobbing. Between sobs, I sensed a conversation between the two doctors. I remember one handing me tissue while one left and returned with a woman. She placed her hand on my back and attempted to console me. I sensed more conversation. I tried to speak but there was no sound. I cried with no noise. The tug in the back of my throat turned into pain. Pain that I know so well I can feel it as I am typing these words. It felt like a hand was reaching up my throat and gripping the back of my tongue. I will never forget the pain or what I became. I tried to speak and nothing came out. I felt my voice with my body, but only silence came from my mouth. I felt rubbery, like I was turning inside out. I had become The Scream, like the painting.
I don’t know how long I sat or remember putting my hands over my eyes, but when I looked up, the doctors had gone. The woman remained. The feeling in my throat was gone. Then I found myself hugging a complete stranger. Once I let go of this poor woman from what was probably an awkward moment, she gave me some water and more tissue. I felt calm. I felt relief and I had no idea why. She gently guided me with her hand on my back me to her office using a route that avoided the waiting room. I was thankful for the privacy. She led me to a room with no windows, but plants. Plants that appeared to thrive under florescent lights and their willingness to thrive under those lights comforted me.
She had introduced herself to me as my counselor. I could finally understand what she was telling me. I don’t remember the exact words, I understand it to be this: I had become so overcome with grief from the loss of use of my hands from scleroderma, my brain was beginning to shut my body down. She told me I had major depression and severe anxiety. She made an appointment for counseling. The degrees on her wall told me she had a phD. I would be back to see her in two days. Then she brought me to the pharmacists office.
I had been to the pharmacy many times at this VA Hospital and met with pharmacists at a window before, but this pharmacist was different. I don’t remember his name. He was very tall and had dark black hair. His demeanor made me feel comfortable in his presence. He seemed excited I had my degree in psychology. I was sure why, because my knowledge compared to his education, I was like a second grader. He was a Pharmacologist with a phD in neuroscience. This was to be the first of our many meetings. He told me he would be following my progress closely.
I had assumed my depression was temporary, just like I had believed my scleroderma was. I had been told for years that scleroderma is a progressive disease and that my body would change. I heard the words, but I never believed them until I met this man with a messy desk and a working antique Mickey Mouse phone that seemed to float above the clutter.
His explanation went something like this, “Your brain has responded to the progression of scleroderma and has started the process of shutting your body down. It’s probably why you no longer feel hungry.” He was right, I was no longer feeling hungry.
He continued, “Depression is not just a feeling, it is a physiological change in your brain and your brain has stopped producing a certain type of neurotransmitter. You will most likely need medication for the rest of your life. This is not your fault. It’s a natural reaction. You are 29 years old and you have been through more than most 50 year olds. If you did not have some kind of reaction, I would be worried, but I am going to keep my eye on your medication doses to make sure they are helping you.”
And watch me, he did. I remember spending more time in his office than my counselor’s. We talked about synapses and receptors. It was like being personally tutored about my own depression. For some reason, I was more interested in the physiological function than anything. It kept me talking to my counselor and over time, gave me a sense of empowerment. I had a truckload of issues to work out, but what I had learned from that day is that scleroderma might take me down, but depression would probably kill me first if I ever let it get so out of control again.
Now, twelve years later, I still take depression and anxiety medication. Based on my own experience through the years I do believe in the mind/body connection. When I have a bout with depression; my symptoms get worse, my pain tolerance is lower and my skin gets tighter. Depression with a chronic illness like scleroderma does not go away. Symptoms of depression come and go as the disease progresses. Because of the help I received that day I became The Scream, I have the ability to recognize unhealthy depression, anxiety behavior and symptoms so that I can get help when I need it. The day I became The Scream was not the last time I have been a Scream and I am sure I will have days like that to come. I don’t know what is to come, but since that day I have survived countless hospital stays, near death in childbirth; pulmonary fibrosis, sarcoidosis and rheumatoid arthritis diagnoses in addition to scleroderma and a divorce. All that in addition to life’s normal transitions like loosing family members, changing jobs or loosing one. Scleroderma is a part of my life, but it is not my life.
Of course I wish it away. I want all of it to stop but there is no cure at this time and it is not going to stop. Its okay to wish it away. It’s just not okay to ignore it or let scleroderma, sarcoidosis, rheumatoid arthritis or whatever your diagnosis consume you. If you are still reading this, I still wish I could do a Jedi Mind trick and make your illness and it’s symptoms stop, but no one can. I can tell you it’s going to be okay. Not because you are going to get better. It’s going to be okay because you, the reader are going to take care of yourself, watch for signs of depression and get treatment when symptoms show up. Taking care of ourselves makes us powerful and it is the only thing all humans have control over, chronic illness or not.
So I do my diagnostic tests and go to my doctor’s appointments. I take care of my health like it’s a full time job. My life depends on it.