Content Warning: some discussion of depression and negative self-talk. If you are depressed or know someone who is depressed and in need of help, please look at the resources available through the Anxiety and Depression Association of America. You can find support groups, therapists, and treatment options here. You are not alone.
Before figuring out how to make adaptations to my parenting, I had to learn to be okay with my new normal. Parenting with MS requires a few extra steps but with some adaptability, it’s hard to notice that there’s a difference.
It’s frustrating that I can’t be the parent I want to be, but I have to be at peace with myself. No amount of changes can stand up to feeling discouraged about my situation. Discouragement is normal and should be honored when it occurs, but how I cope with that discouragement matters.
This isn’t meant to be taken as advice or “what should be done,” but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can and that’s the most important thing.
A Fight for Control
Recognizing that I have no control over my fatigue and mental fog is the first step I’ve had to take to accept my limitations. I find workarounds with my fatigue (more on that in Friday’s post) and mental fog, so I am not giving into the lack of control. I am accepting that I cannot control it and there’s a huge difference between the two.
Hi, my name is Deborah and I am a control freak.
I’ve admitted this several times on the blog. I like to be in control of every aspect of my life: from relationships to professional projects, I try and control everything so it can be what I perceive to be as perfect.
Psychology does not support this attitude: maintaining strict control over everything is the quickest way to be extremely stressed out and unhappy. It may cause everything to spin more out of control if I try too hard.
As the linked article points out: “Wanting control leads to anger; this emotional response increases when control is impeded.” The more I try to control my situation, the more frustrated I get and exacerbate the situation.
How do I try to control my MS?
There is a level of regression that occurs in my grieving process: I go into denial and try to forget that I have MS. I will push myself physically and mentally and completely ignore my body’s warning signs.
Looking at Spoon Theory: if I use up all of my reserves (and then some) I have the potential of not being able to do anything for the rest of the day and possibly the next day. This happens more than I care to admit because I just want to get everything done on my “to do” list.
That’s why working on my priorities every morning is so important.
Emotionally, I try to control my MS by being hard on myself. I will berate myself if I wasn’t able to do a particular task to my liking or if I don’t get a post/email/social media interaction out in a reasonable amount of time. I find that I will sink into a slight depression when I focus too much on what I can’t do for myself and my family.
MS cannot be controlled. Its very nature does not allow for control.
Most of my frustration stems from a belief that if someone else can handle multiple projects at one time, why do I struggle to do a single task? I am constantly comparing my abilities to others and wishing I measured up.
Learning to Let Go
The answer is that I have to acknowledge my differences from others.
I wrote about the danger of comparison before and how damaging it can be. Wanting to be perfect is admirable, but it is impossible because I am human. Humans are flawed by nature and it’s in those flaws we can see beauty in others and hopefully in ourselves.
Wabi-sabi is frequently cited as an art form that celebrates the beauty of imperfection and that celebration should not be dismissed. Seeing the cracks and asymmetry makes the art more beautiful because it is interesting to reflect upon. When I see artists attempting to draw the perfect circle freehand, I can admire the skill and work that went into the process, but how boring is it to look at the perfect circle beyond the skill?
Transferring the celebration of imperfection in the arts to humans – there is no difference. If I look at what I perceive to be the perfect person, initially there might be jealousy over how well-manicured their life is, but I can’t help but feel that there’s a blandness to it too. I have been conditioned to believe that this assessment of blandness to be sour grapes, but that’s not really the case.
There is a lot of skill and work that goes into curating the perfect looking life, but it becomes boring to look at for extended periods of time. I can admire the skill it takes to have an outward expression of perfection, but I don’t know how much time I will want to spend interacting with it beyond general admiration.
My life is far from perfect, MS ensured this to be the case. But looking at it, it has also made my life more interesting. I love challenges and MS has turned life from the “easy” mode to a permanent “hard” mode. I am not complaining because I always loved a challenge.
The question often comes up in the Facebook groups: what good has MS brought to your life?
Naturally, 90% of the responses range from “nothing” to “f**k you, MS.” And there’s a truth to it. MS brings little to no good in the lives touched by it and it should just go away. It’s a miserable disease.
I have found that it has brought me some positivity: it forced me to reassess my life and make positive changes. I have put things in proper perspective, proper priority, and it’s forced me to follow my passions whereas before I was too afraid to do so. I can no longer be afraid of imperfection and failure because I don’t have the emotional energy to spend on such fears.
I have to see beauty in my imperfections and perceived failings because that’s what makes me an interesting person. It’s what Ash fell in love with even if I don’t understand it sometimes.
This applies to my parenting as well: my parenting is never going to look like another’s nor will it ever be perfect. MS ultimately has nothing to do with my ability to be a parent, I am solely responsible for my abilities. I may not be able to do everything I want to with Jai, but by being adaptive, I can work around my symptoms so he barely notices the difference. When he does, he’ll be sensitive enough to see that I tried the best I could for him.
Many children, when asked about their parents, do not see the same things we do when we self-assess. Children see a loving and caring parent when we think we are failing them. I remember when this video went viral a few years ago and it stuck with me: even when I think I am having a bad parenting day, he’s less likely to see that and focus on all the fun we do and the love that I provide for him.
I will have my ups and downs and he’ll eventually get old enough to recognize them, but the lessons I will hopefully pass on to him will be ones of compassion towards others, okay with imperfection, and always be adaptable no matter the situation.
My parenting abilities won’t look like “normal” parents because of my fatigue and mental fog, but what is normal? I cannot compare myself to others when there is nothing to compare – regardless of what I might think there isn’t a normal because everyone parents differently.
How have you managed your feelings about parenting with MS (or a disability)? What helps reassure your abilities and reaffirm that you are doing the best you can? Leave a comment below.
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