Which way – this way, that way?


Ramin and I tend to either decide on something immediately or take quite a while to make a decision. There’s not really an in-between.  My mind is thinking of that moment as well as later that day, the next day, appointments that are coming up in the next week and often what’s coming up in the following month.  Ramin tends to live in the moment so completely that he can find it challenging to think beyond what is happening right now. This could just be our personalities, but it could also be that MS is intervening, yet again invisibly but very much there.

My Mum made a good observation the other day, she noticed that Ramin tends to wait for me to ask him to do something, or asks where we are going and when. I’m the one who carries around the week’s schedule in my head and he is happy to rely on my memory for the organization of his week, of our week. In itself it’s not too bad as our lives are not particularly complicated, but it does mean that he isn’t engaging his own memory, is reliant on me and floats from one event to the other without much reflection. How wonderful to trust someone so much! Ah, but this has to change. Yes I am Ramin’s carer, but in this role as well as helping him with the every day things that would be too hard for him, I also want to assist him to progress in his life, not to keep him reliant on me for every little thing, all the time, everywhere. Mum suggested that we write the events of the week down in a little book – not a diary (He has one of those already and either never remembers to look in it or there’s too much space in-between events) – but a little book so that when he’s not sure about the week’s plans, he can look in the book and remind himself without always asking me – crossing off events when they’re complete. I love this idea!

The Oxford Dictionary definition of independence (as it relates to a person) is: ‘adjective: ‘free from outside control’…’capable of thinking or acting for oneself’…’not influenced by others’…’not depending on something else for strength or effectiveness’.

If the opposite of the definition of independence is true for him then he would be controlled by me, I would think for him, I would  influence him and he would depend on me for strength or effectiveness. At the moment, to some degree, all those things  are true – he kind of likes it that way to be honest as it removes responsibility from his actions – and he knows I have a clear head and can make good decisions. Also in marriage being interdependent is healthy and good! When I go to the dentist I totally rely on his calm strength to be able to face the scary-ness!

However a marriage is a union of two people, through which they both grow and learn together. As his wife I  want him to be someone I can rely on. I want to have a great life together! I want him to fly. I want to fly with him! If one person is making all the decisions and the other is relying on that person and not thinking for themselves, then how can either of them grow? How can I grow as a wife if my husband just agrees with my ideas of where to go, what to do, what to eat, what to buy, how to serve, who to visit and so on? It’s like being alone with a lovely pet dog who loves you and follows you around and is sad when you leave. Sorry, but this is true! How can Ramin grow as a husband if he doesn’t think about his life, ponder on his actions, reflect on  his love for me and ways to grow together or even just think for himself about his diet, exercise, friends, service, prayers and so on without my prompting? In fact it’s not only the marriage that suffers if one person isn’t independent, but that person’s whole life! I don’t want Ramin to become me, for Pete’s sake!

Ramin is a wonderful man with an excellent University degree in film (Aberystwyth), strong personal opinions (when he feels he wants to express them), a fantastic personality full of joy, calm and love for people and someone who needs to have the space and encouragement to just be himself. MS took all his abilities away for many years and I feel he lost a sense of trust in his mind and his body in that time. Now, with almost all his abilities functioning really well, he needs to discover his self-trust again and not let those years of illness rob him of a meaningful and independent life. You see how  you can choose to let MS have a huge, looming role in your life, or how it can be pushed away and play no part?

So therefore sometimes our decisions are quick and easy – either when we both agree straightway to do something (eat pizza, go for a walk, watch this movie, ring his Dad) or take a lot of time and space when it’s clear to me that I need to step back and let Ramin find his voice. Yes I can get frustrated and in my head my voice is saying ‘hurry up!!!’ but expressing this just kills any chance Ramin had to think and use his voice. For example, it took us two weeks to decide that we wouldn’t continue the fertility treatment and would start the adoption process. He wanted me to make the decision and I refused to do so by myself. I waited until he had really thought about it. We also consulted with our family members and prayed a lot.

Perhaps I need to employ this method more in our lives, not just about the big decisions but also about what to do and where to go – to give him a real sense of us deciding together. Man, I’m going to need some patience from the Divine! So maybe that’s my disability right there, I’ve learned to be the strong one and now I need to learn to step back. You can see this in the way we walk down the street, I’m always walking ahead while he follows behind. I then stop and wait, realising I’m walking too fast. Then we walk together, holding hands, making eye contact while I pull back my desire to strive ahead faster and he pulls back his desire to follow and not think much.

Perhaps he’s my hermit crab and I’m the shell he hides away in. He’s protected by his trust in me, his love for me and a regular routine – and when he feels safe, and the way is clear he’s able to pop his head out of the shell and feel the waters ahead with tentative thought tentacles – and that’s when I need to sit quiet and let him take us both forward, knowing it’s the experience of moving forward that’s important, not really if we’re going this way or that way.


4 comments on “Which way – this way, that way?

  1. Oh Fleur…it is so handy attributing Ramin’s lack of initiative and decision making to MS BUT, I too am the decision maker. I think it is a gender thing. For us, our difficulty is that on the one hand I have had to give up a lot of independence over things such as when to get up, go to bed or eat but I would never ever go out anywhere if I didn’t ask or suggest. Luke has had to grow so much. He now chooses what food to buy although he doesn’t like needing to do that …I could easily take over but the learning opportunity would be lost. I really think some men just feel comfortable with the women making all the decisions etc. If I try to get involved by eg asking why Luke chooses to do something in a particular way, it is because I am interested in the answer. Luke HEARS a challenge so just says “ok I won’t…” That is not proper consultation nor is it what I mean. MS gives us a horrid disease but it also gives us the means of looking at the balance of our relationship and we are so lucky to have the consultative tool available. Btw you said Ramin’s studied film making at Aber. My cousin is a prof of film making there, did he know him. …Gideon Koppel…his dad is my dad’s brother.


  2. Hi Tish, yes you could be right! I have female friends who also have husbands/partners who find it difficult making decisions. The things is though, Ramin had no problem deciding things before he had MS. I often don’t know what is MS related and what is just him as a man or as Ramin. I do know that MS has significantly affected his thinking, ability to reflect and analyse and we need to work on this together. Not everyone with MS is affected in this way – most of the women I know with MS (your lovely self included) have very clear minds and excellent powers of expression. Ramin had multiple relapses in one year that created huge lesions on his brain and severely affected his thought processes, speech and memory. Nine years later (relapse free) he is growing stronger, both physically and brain-power wise. I also have to add that my blog is about our experience together as a married couple as well as dealing with MS. So sometimes it might just be about us – other times it will clearly be about MS – very hard for us to separate the two. Also MS affects people in many, many different ways – so what Ramin experiences might be very different to what other people go through, with the same illness. Yet I do take your point – and men do need to learn to take the initiative more!


  3. Have no idea if this has ever been shown to help people with brain function issues, but you might like to look at “brain Gym”. The premiss is that we all have a dominance factor balance pattern that all of us would benefit from re balancing. Eg most of us know which is our dominant hand but even now I can’t work out which my dominant ear is. By looking at the left or right pattern of ears, eyes, brain, hand and foot, a pattern emerges which then has attached a profile. The brain gym exercises can then re balance that. You Might of course know all about that as it is useful for teaching. Children eg know whether they want to sit on the left, right, back, front etc and it matters. Some NEED to fidget, some learn best with shut eyes etc etc.


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