Good evening! My name is Charlene Rodgers and this is my husband Lance Calisch. We are really excited to be here. It is always wonderful to be with people who truly understand and share the challenges brought on by ST. Lance and I live about one hour south of here in Olympia, Washington. One of my goals this week-end is to meet as many of you as possible and hear your stories. In particular, I want to meet people from Washington because I only know one other person from Washington that has ST.
Our purpose tonight is to share with you our ST journey as a couple. I will first give you a brief history of my ST and then Lance and I will talk about our journey. My ST started when I was 45 years old. At first my symptoms were so slight that I didn’t even notice them. A massage therapist looked at my alignment one day and told me that my head was slightly tilted and that I should do exercises for better posture. I started standing straighter to take better care of my body. Two years passed without any additional symptoms. Basically my life was normal. Then my head began tilting more and I started noticing that stress would make my head tilt. We were experiencing stressful family issues which were making my symptoms worse. The symptoms, however, were still relatively minor and I just thought I needed to pursue some stress management options. I had no idea I had something called ST. I started investigating stress management techniques. I began bio-feedback as a relaxation tool and I began hot tubbing in the evenings to release the stress of the day. Another two years passed without realization that anything more serious was occurring than a stressful day. Then our family experienced an extremely stressful event. My neck muscles started pulling more and within two months of the event, I could no longer hold my head still or straight. I had no idea what was happening to my body. I remember sitting at my desk at work trying to type while my head tilted to the left, almost to my shoulder. I would struggle to keep it upright so I could type. Typing became impossible and I became very frightened. At the time, I was doing stress reduction breathing techniques to relax. I would lie down on the floor of my office and practice my breathing. Then I would go back to typing. Anytime I had to read at work I would lie on the floor and read. I found that these breaks helped, but as time passed my head got worse. During the initial 4 years of my dystonia I went for my annual physicals and mentioned my pulling neck but the doctor only talked to me about stress reduction. Once my neck advanced to the point that it was a constant struggle to hold my head up and straight, I realized I needed to seek medical help specifically for my neck. I went to my family doctor and asked for a referral to a physical therapist because I thought maybe I just needed to strengthen my muscles. I couldn’t understand why I could not hold my head up. Even after explaining to her what was going on, my Doctor did not diagnose me. She just gave me the referral to the physical therapist. My doctor never did diagnose me. She didn’t get it. Providence intervened at this point because I just happened to go to a physical therapist who was working with an ST patient. After seeing me, the physical therapist talked to her other ST patient about my symptoms and the patient, who is my dear friend Jennifer, gave the physical therapist her name, phone number and information on ST to pass on to me. At my next therapy appointment my physical therapist told me I probably had something called ST, that it was a neurological disorder and that I needed to see Dr. Bell the neurologist who treated Jennifer’s ST with botox. The physical therapist gave me some exercises but because they were difficult for me to do, she said I needed to get botox before she could really help me. I walked away from that session in shock and very frightened.
My fear became overwhelming. I had obtained some knowledge of ST through the materials the physical therapist gave me and I had looked at the NSTA website. These resources made me more fearful. I did not find much hope in them. I was afraid that ST would lead me down the road of pain, so much pain that I would not want to be on this earth anymore. I was afraid that I would look ugly and Lance would not want to be near me anymore. I was afraid that I would never grow old with Lance and sit on our porch rocking in a rocking chair as we had dreamed or travel as we had dreamed.
I was embarrassed because I looked different. To me I looked ugly. I was embarrassed to face my co-workers and have them see me looking weird. I did not want them to think I was less capable at work and not able to do my job. I did not want to be treated like a disabled person with pity. I have always been a very successful person in my career. It was frightening to think that I might lose my successful/capable image and a career due to my illness.
After my diagnosis, I asked Lance to help me by doing research on ST, to find out about it and tell me only the positive things. I needed to hear all the positive information I could. I did not want to do the research myself because I knew I would also see the negative information about ST and I could not handle that.
Lance (Early History)
I remember Charlene saying “something is wrong, my head is shaking.” I said, “I don’t see it” but something about the way she said it worried me. She wouldn’t make this up and I didn’t know what to do. As time went by she began stretching her neck whenever she was stressed. I called this “twitching” and I thought her “twitching” was an unconscious reaction to stress. I had no idea her neck was being pulled by her muscles.
Then she was officially diagnosed. She had something called Spasmodic Torticollis. I read up on it and knew it wasn’t fatal so I waited for Charlene to tell me what she needed. I knew Charlene had an ailment but I didn’t know what to do for her. And throughout this ordeal this has been the most frustrating part for me; that I can’t figure out how to help her.
Charlene asked me to do research because she was too afraid. I didn’t understand that at the time. She told me, she said it, but I didn’t realize how deeply she was afraid. She wanted me to give her positive news but I couldn’t find any. “Well, it’s not fatal”, “uh, sometimes it goes away but that’s not likely”. How do I sugar coat that? I found a web site where you could chat with other STers. I book marked it (www.stsupport.com), and said “here you go”. She never looked at it and I didn’t understand why. She needed me to do the research not find the resources; I didn’t get this because Charlene has always been independent and didn’t want me to do stuff for her (even though she really did – one of those Men are from Mars things). Never did I realize how alone she felt and how scared she was.
Charlene
I felt a searing loneliness. Not only had I never heard of ST prior to my diagnosis but no one I knew had ever heard of it either. I felt Lance did not understand the impact ST was having on me and was not even trying to understand. I felt like ST had stripped me of everything worthwhile.
It was at this point in time that I went for my first Botox shots. I didn’t really want to get Botox because I didn’t want to inject a poison into my body. I was surprised by how many injections were needed to apply Botox. I made it through the injections but when the doctor left the room I broke down crying. I couldn’t believe that this was what I now had to do every three months for the rest of my life.
Lance
When she started Botox I didn’t fully understand what that meant. I knew she was getting a shot but I didn’t realize she was getting multiple injections. I don’t think she invited me to join her and I don’t think I asked. And I still didn’t understand how frightening this was for her. I didn’t really know what to do – does she want to be alone? Does she want me there for support? I knew she had this thing called ST but I didn’t know what to do to help her which left me feeling “lost”. When she has a cold I can go to the store for medicine, when she has the flu I can do the grocery shopping and make dinner, but I don’t know what to do for ST. How do I support her in a meaningful way? She was feeling hopeless and I was feeling helpless.
Charlene
4 months after my diagnosis I decided to google ST. I thank God that Howard’s website popped up. His website provided encouraging words. I wanted to call Howard but I was afraid to because I was afraid I would find out horrible things about ST. I thought about it for 3 days and then picked up the phone. I did not tell Lance that I had found a website about ST and that I was going to call the organization. I was afraid that if I found out negative information that Lance would tell me that he didn’t want to live with a person that was going to become less and less capable in life.
I called Howard on a Sunday. I half expected that no one would answer, but I was wrong. Howard talked to me for 45 minutes. He did most of the talking. I did the crying. He told me his ST story. He was the first ST’r I had talked to. He invited me to the annual symposium. When I got off the phone, I felt hopeful for the first time in months.
I wanted to go to the symposium but I was afraid because I thought that I would see a bunch of people who looked weird and that it would remind me of what I would look like as the disorder progressed. When Lance got home I asked him if he would go to the symposium with me. I wasn’t sure that he would. I thought he might think, “Why would I want to go to a symposium with a bunch of sick people?”
Lance
I thought “awesome! Yes I’ll go with you”. Until this point Charlene and I were spinning in different circles. I was looking for any way to support her and the symposium gave us something. Some hope of finding out more information.
Charlene
Talking to Howard gave me the courage to call Jennifer. I had not contacted Jennifer yet even though I had been carrying her phone number around in my purse for 5 months. I had not called because I was afraid of what I might find out. When we finally connected it was such a relief to talk to her and know that she understood my pain on the deepest level. As Jennifer and I talked and supported each other I realized that Lance could not understand what I was going through unless he became involved in my ST life.
Lance
Symposium
When we arrived at the symposium in September, 2005 I didn’t know what to expect. We signed up for the pre-conference side trips. And here we met other ST’rs. I met Bill and George and Sue and Pam and Howard and each had a different story to tell. Some experienced Pearl Harbor events where ST literally descends upon you over night. Other’s experiences were more gradual, possibly the result of a sports injury many years ago. Some had had an operation called a denervation. Some were considering a procedure called deep brain stimulation. Some took Botox. Some took Myobloc. We went on day trips and I noticed time was built in the schedule because ST’rs can get tired and need a break. And I began to understand just how big this thing called ST really is. Prior to the symposium the only person I knew with ST was Charlene. At the symposium I met hundreds and heard their stories and learned of their circumstances and I realized the magnitude of this disease. And I was overwhelmed. And I said to Charlene “I had no idea”. And I feel terrible that I didn’t get it when it was just the two of us but glad that I finally did get it. And at the same time the feelings of helplessness began to subside. Because alone we are helpless but together there is hope. Together we learned about botox and denervations and deep brain stimulation and a non-invasive choice from the ST Dystonia Recovery Clinic. None of these are cures but do provide relief and the possibility of better quality of life. So, we came up with a game plan and out of a 3 day symposium we went from helplessness to hopefulness. As a non-ST’r I couldn’t give her what this organization gives her.
Charlene
The symposium gave me the hope I needed to begin implementing a plan to recover from ST. I saw people at the symposium who were still living their lives to the fullest and I wanted to be like that. I wondered: How does a person face pain every day and still smile and laugh? How does a person face walking into walls, losing the ability to participate in beloved activities and losing friends and jobs and still want to be in this world? I didn’t know the answer but I was determined to find out. Lance and I made a plan for my physical recovery. I made my own personal plan for mental recovery. Our first step was to attend Abbie Brown’s ST Recovery clinic. I have been doing the exercises she gave me 6 days a week for 9 months. I will do them for the rest of my life. I attended a spiritual week-end called Walk to Emmaus. My strength to continue this ST journey comes from God. I began going to Toastmasters because I was embarrassed about how I looked. I knew that by forcing myself to go to toastmasters I would stave off my desire to hide and not be seen. I changed from working full time to working half time in a job share position last January to give my body the rest it needs. Finally, I continue to get Botox shots. Their effectiveness varies. It is discouraging when they don’t work well, but I enjoy every day when they do work well. I believe there is great hope for ST’rs. I believe that God is working on a cure for ST and I believe we will see it in our lifetime.
Lance
Throughout it all there have been some humorous moments.
When our granddaughter, Kaylee, was born, and as with all newborns, she was having trouble holding up her head. And as Charlene was holding Kaylee in her arms Charlene looked at her and said, “I know exactly how she feels.”
Charlene
I had to laugh when Toastmasters scheduled me to give a Body language speech one week before my next botox injection. I thought to myself, “They are definitely going to see some body language but I am not sure they are going to know how to interpret it.”
Lance
5 Things to Do if you are the spouse or partner of someone with ST:
- The first thing we must do for each other is figure out how to communicate about ST. It’s not easy. It’s hard. It takes practice and lots of practice. In practicing for this talk I found I was still learning about Charlene’s feelings. Charlene said to me “What I need from you is love me, hug me, tell me it’s ok then treat me as a normal non-sick person.” Keep talking.
- Know your partner is scared. You would be too.
- Do your best to understand her story. You can’t be unmoved once you know someone’s story. Being here at the symposium is a good first step.
- Ask to go to Botox shots with her. Her suffering is more easily understood if you can experience it first hand. Shared experiences create bonds.
- Be aware of what she can and cannot do; pitch in where she needs help. I know for Charlene, chopping dinner ingredients is very difficult so I help her chop. This brings up another kind of funny story. One night as we were preparing dinner Charlene turned toward me with a knife in her hand. She was kind of struggling with control of her head and everywhere her head went so went the knife. All I could imagine was lying on the floor with 47 stab wounds and trying to explain to the investigating officer, “honest, she didn’t mean to!”
The lyricist, Edith Lindeman, wrote a song that was a number 1 hit in 1954 and I think the lyrics apply here:
Give me your hand when I've lost the way
Give me your shoulder to cry on
Whether the day is bright or gray
Give me your heart to rely on
Send me the warmth of a secret smile
To show me you haven't forgot
That always and ever, now and forever
Little things mean a lot
My life is not harmed because Charlene has ST. Life has its curve balls. I can deal with it, you can deal with it, but it’s best when we deal with it. Hope is available. To find hope one needs a foundation. For us, our great joy is our spiritual foundation in the Lord. And our physical foundation is you, ST Dystonia.
