Advice for the Mate
Hi, I have ” Advice for the Mate” if you want to address the wife/husband of the loved one with ST. My husband has written to you, Mike Withey, and I read your magazine from cover to cover. It has helped us and maybe this will help others.
My mate, husband, has ST, dystonia. It is nice to have a life partner. When one partner falls, (gets a disabling disease) the other partner grabs the reins and keeps on plowing ahead. We have lived with this for about 21 years now. We have fought it together. At times, we’ve had to ask each other, “Is it you or the torticollis talking or reacting to a certain situation?”
We have raised four boys. Our youngest is 21. He has never known a dad without the aspects of a chronic illness. The boys went through cub scouts and boy scouts and 3 of them earned the Eagle Scout badge.
What has worked for us might work for you. When it gets to be too much, I have to be happy-up beat-positive for both of us. We have all learned baseball, basketball, wrestling, and the never ending homework, together. Yes, dad had the disease, but, at times, we all felt it.
I would like to encourage others who are suffering with the physical disformality, mental anguish, and pain levels most of us will never know to look to others around you to talk and explain to them what is going on with you today. Keep friends and family informed on what you have or if you are having a good or bad day.
Think on those things you can do and don’t dwell on what you can’t do. Invent ways to do something that brings you enjoyment. For example, if you go out to eat the blank stares of strangers at restaurants were too much. My husband and I go to the same small mom/pop restaurant that draws local familiar people. We usually go at 3: 00 PM – less customers are there because it isn’t really lunch and too soon for dinner. I sit facing the public; Mike sits facing away from the people. We keep conversation light, cheerful, and we feel free to laugh and giggle.
Think of activities you can do and put what you can’t do in a scrapbook so the grandkids can look at how life used to be. One activity we do enjoy is to sit in our row boat, with a trolling motor, and photograph the birds. We watch spring come and fall colors go here in Michigan. Instead of fishing we eat a picnic lunch in the boat.
Something Mike can do is talk. He earned the highest degree, at home, in Armature (HAM) radio and talks all over the world, by voice and Morse code. He enjoys reading and he earned an associates degree at a local college. Then he took a fancy to radio controlled airplanes. He is not one to sit!
Think of an interaction you can do with the public to keep your attention on others around you so that you’re not so self-absorbed. We tried different churches until we found one we “fit” into. Our church has a small hometown atmosphere with pot-luck dinners, special musical events and a bottomless coffee pot for just talking and hanging out. When Mike can’t sit or he needs to move (because the pain is too much or the tremors start) – there is a listening room behind the main room that he can slip away to. Mike has made life long friendships with the other men at this church. He found a niche and others come to him with more than ‘how you doing?’ on their minds. So, keep trying until you find the right one for you. We have found love and acceptance for who we are.
I’m not trying to minimize the catastrophe that ST brings to the person and family. You can’t handle things alone. I suggest to increase your social network.
“Having a large circle of friends increases the chance of finding one “pal” to confide in.
Finding and talking to someone about common life interests in general takes your mind
off the ST and reduces stress, and keeps anxiety or depression at a minimum. Venting at a support group is one option. But, having a “pal” gives us a chance to concentrate on something/anything besides ST.
We were married for eleven years before Mike got sick. He worked two jobs, on occasion would work through the night and would come across happy and content with life. Then ST came into our life. I have seen him live with this for twenty years now and I will never fully understand what having chronic pain and a debilitating condition is like. If you know someone with ST you must respect what they have to deal with and that they are doing the best they can.
At first, doctors suggested “it was all in his head – stress” Years later he was finally diagnosed and it was years after that, that he went in for surgery. The psychological aspects of finally being diagnosed with a disability was a relief, in that there is a name/condition for what he has; yet there was apprehension in having something that retired him 14 years early in life. We have had so much to deal with. Some advice: Just take one problem at a time and don’t take on the – but what-if – situations in life. You can give yourself overload stress.
Try not to allow your spouse to fall into a “what-if” cycle. Worrying about the past or future is not beneficial for the present. If people fret about every little detail the original issue may be blown entirely out of proportion. When this happens, sadness is amplified; depression creeps in and family and friends are pushed away. People can help by listening to what we think about our condition and how to move forward from here. Over focusing on negative thoughts can lead to stress, depression, and negative physical consequences. Pain may increase from over thinking. Sleepless nights, a sense of helplessness, increased anxiety, or raised blood pressure might come from over focusing on just the ST.
We have tried to balance ST and life. Yes, ST is here but so are a lot of other things. It is a challenge to juggle medication, proper nutrition, exercise and rest. It is wonderful to have a partner to share a long life with and I wouldn’t trade him for the world. Mike found a friend, Ted, at church, to “pal” around with and Ted is worth more than all the money in the world to us. Between Ted and me, Mike doesn’t have to handle things alone. What has worked for us – staying together, working with ST and not against it. It is here, so we find things we can do. –
New Lothop. MI
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews