With MS, I don’t want to lose control when I should give it away
Noticing how my children are gaining independence as I'm losing mine
I’m losing control.
I don’t mean that I’m out of control or spiraling in that direction, but I definitely feel like I have a lot less of it these days. That’s a real problem for me because my therapist said that one of the primary issues contributing to my depression is my desire to be in control. She also said that I tend to overthink things.
I’m so glad that never shows up in my writing.
(Careful, your eyes might get stuck from rolling back so hard.)
“Losing control” might be the right words to describe the direction my life is moving, but I’m not sure I like it very much. I think it’s because I’ve lost so much to multiple scerosis (MS), and that depresses me. I’ve lost the ability to walk, use my hands and fingers normally, and do most of the things that abled people take for granted. It sometimes seems that MS is making my world smaller, and I’m rapidly running out of space. That tends to make me almost jealously protective of what I have left.
I see that as I watch my children grow. Instead of smaller, their worlds are becoming larger. As they adapt, they’re constantly seeking out things to call their own. It started with toys, moved to ownership of a certain spot at the table, turned to closing the doors to their rooms, and will someday include vehicles and homes of their own. They’re gaining their independence as I’m losing mine. Saying things like “I can do it myself” is just one way to show how important it is for us to have whatever we can control — to a child as well as an adult disabled by the symptoms of multiple sclerosis.
In nearly all cases, control isn’t really lost, it’s gone missing. The control is lost to me, but it belongs to someone else now. I don’t drive anymore, so control of the vehicle rests with someone else. I have a wheelchair that compensates for my lost ability to walk, but someone else helps me into and out of it.
Giving up control
Initially, letting go of control was difficult for me. Sometimes it still is, because when someone has control over me and I didn’t give it up willingly, it can feel like I’m a hostage.
On the other hand, willingly giving control to someone I trust is liberating and wonderful. I suppose that’s why, even when a close family member offers to help with a task, I usually reply that my wife, Michala, will do it. It’s not that I think they’re incapable of doing it or that I’m incapable of explaining how to do it; it’s that I trust my wife to do it. I trust her to the point of letting go of control and giving it completely to her. As my notions of independence have evolved, “I can do it myself!” has become “Michala will do it for me.”
I suppose the concept of letting go means something different to me now. There was a time when I thought of it as letting go of the edge of the cliff I was dangling over and falling to my doom. Now I see it more as letting go of a heavy, impossible-to-see-around burden. Setting that down allows me to see things as they are. It can’t be taken from me. I’d decided to put it down willingly, and being willingly unburdened is a good feeling.
The best part is that even with my limited ability, letting go of what I was carrying frees my arms up to carry what’s really important. Setting aside what’s weighing me down and keeping me from seeing where I’m going? That’s best for everyone.
I only wish I’d done it sooner.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Merlene Cook
Patience .. Patience is the hardest part of giving up control and waiting for someone to help or resolve a situation. My husband is my most continual caregiver. At times, I see I have overstepped my number of favours I asked in the day. He jokes and keeps it light .....saying ...ok already, if you don't mind, I was going to ...... I try not bark my requests as needed.
Often, I leave it for him because he knows how I want it . When others offer, I too turn down their offer so that I do not have to constantly explain in detail to others. I find this to be tiresome. Yet, I am beginning to realize that this is not fair to him. Placing the full burden. When others are around, I should share the tasks and lower my expectations on the results. He says I am not a burden and it is no problem. He hates it when I constantly thank him. He remarks ... stop thanking me.
I joined my sisters for a girls get-away weekend. I noticed upon return how regenerized he was. I need to do this more for him. Give him a mental and physical break. My control ......share my requests when others are available. Improve on my former supervisor directing skills and take the time to explain. I have time.
Lisa Kandel
It was good getting this article today. I have been having a really rough week. Every MS symptom you could have, I have had this week. I'm feeling kind of down and your articles make me remember I'm not alone in this world in this fight.
Thank you and God bless!
Julene Logue
Yes, I've had MS 25 years, and that it what it feels like, losing control. It also feels like I've been imprisoned in this body for 25 years because there are so many things I used to do that I can't do now. Maybe because this is the dark time of year, I've been more depressed and angry about it. It's so disappointing that 25 years of my life have been stolen by this disease.
George D Baker
As I was reading this article I found it very helpful because I was just getting ready to start my U.S. Army career when I was diagnosed with MS. I to had a hard time with it at first because I was always a very independent person and never asking for help and then came the news of having MS. I remained somewhat independent but in 2015 I lost my ability to walk. It was very hard for me come to terms with because it took away my freedom and even in a wheelchair I still have a hard time getting through it but I have a wonderful wife who is an RN who went back to school and got certified in being a CRRN which is a Certified Rehabilitation Registered Nurse to help me with whatever I need.
Maria Muddell
Always enjoy reading your stories Ben, they're very insightful and I always seem to get something out of them. I was diagnosed 36 years ago at age 21 and touch wood I've been pretty lucky. I deal with 4 auto-immune conditions on a daily basis. It was only very recently that someone said to me " you really need to be in control don't you " ... It was the first time that someone had said to me what I 've always known. When there are forced things in your life that you don't have control over, you want to control the things that you can in the best way and for as long as possible. Like you, I find myself (as I get older) that I need to let go !!! But far out, I'm finding that so difficult. Merry Christmas to you and yours. Maria :)
Kristen Putnam
I also have primary progressive ms very diffcult to deal with. I was a nurse for 25 years. And now I am the patient. What a change of roles.
Mark
Thank you for the insight your article provided. The paradigm shift to willingly let go struck me immediately. Thank you! As I read your words I began to feel unshackled, so to speak. It felt great. Thank you for sharing this and your service.
Virginia
Ben, good article as usual. I know that you are grateful your wife is there to help take care of things, but maybe sometime you should address the problems those of us have who don't have anyone.
Chris Jackson-Smith
Another thought provoking post, Ben. It has made me think, as my MS deteriorates, who I will give my control to. I'm a very self-sufficient person, and I live on my own so my fear is not giving up little bits of my independence gradually but one day facing that I have to give it ALL up AT ONCE. I want to put off that day for as long as possible, but MS might have other ideas. Thank you for your column, Ben, I look forward to hearing from you in the new year; wishing you and your family a Merry Christmas and a Happy New Year.