Body Language

As I lie here in bed with some of the worst back pain I’ve ever had, I’ve had plenty of time to reflect on my relationship with my body. I’ve talked about it before, but being born with MD, I’ve always felt at odds with my body. I generally feel like it’s a separate thing from myself as weird as that sounds. It’s a separate thing I haven’t often gotten along with either. I get mad at it. I don’t understand it. I even hate it sometimes. It’s always kind of been my ultimate foe, even though that’s not the way it should be.

I never really realized it until today when I hurt my back trying to carry in heavy groceries that I wasn’t physically equipped to carry, that I sometimes try to force my body to do things because other, able-bodied people can do them so I feel like I should be able to too. I’m super stubborn about it to the point I don’t usually ask for help when I should either. Part of it is that I also feel so great when I’m able to do something on my own, especially something I didn’t think I could do or something I didn’t think I would have the physical strength to do. Just being able to lift my suitcase up onto the luggage stands in hotels when I went on my first solo trip felt like such a personal accomplishment. But sometimes, I just push my body too far. I should ask for help, or I should make more than one trip out to the car to carry my groceries in. But I just want to cling to everything I can do on my own so much.

It’s been hard aging. I don’t feel old by any means and I know that I’m not, but unfortunately my body is not in that same place. Once again, it feels separate. I have this disease I was born with. Something I had no choice in. As a result, I have to contort my body in strange ways sometimes to be able to get out of chairs, off the couch, or to pull myself up. For most of my life this wasn’t an issue but once I hit 30, it started to take its toll. My back hurts a lot more often and it’s a lot more at risk for getting hurt more easily. I’m extremely lucky I don’t have a lot of pain otherwise and just have to deal with the whole falling thing but the back pain has been really hard to cope with. Water aerobics has certainly helped (even though I can hurt my back there too if I’m not careful) but it still only gives me so much strength. I’m never going to be able to just hop off the couch. I’m always going to have to twist in weird ways that strain my back. So what am I supposed to do? My body has MD so it doesn’t have the strength to do things normally but then I end up in pain as a result. It can be extremely frustrating.

I hope that my relationship with my body improves as time goes on. It’s the only one I’ve got and I certainly try to take better care of it better than I used to. But I hope I can figure out a way to avoid pain more often too. I wish it could perform at a normal strength level but that’s never going to happen so I just have to make the best of what I have.


8 thoughts on “Body Language

  1. Can’t say “like” to the underlying theme of your post–pain–but I admire your positive take. It would be easy to complain, and you’d be right to do so, but you don’t. Wow. I’ve never been much good at asking for help, so I understand your not wanting to do that, but as I’ve gotten older (and I am a good deal older than you), I’ve gotten better. You’ll know when you get there–old and/or wanting to ask. 🙂 In the meantime, stay ferocious! You really are that.

    1. I definitely have my complaining moments but it’s usually alone in my room haha. I’ve definitely gotten better about asking for help but it’s a daily struggle. Then there’s times when I just have to help (ie getting out of a low chair or off the ground). Thank you as always for your lovely positive comments 🙂

  2. Hi Jackie! I can definitely relate to you about not wanting to ask for help when I know I need it! For me, I’m not really sure if it’s a feminist ideal where I feel like I need to be strong enough to do things on my own and not be a damsel in distress. But, I generally feel that I don’t need the help of a man or “knight in shining armor.” So, when you mentioned carrying heavy grocery bags, I definitely pictured myself dealing with the same issue especially since I’m a pretty petite, tiny girl. I really hate people thinking that I’m too weak and not strong enough to carry heavy things on my own. Nowadays, there’s this whole new fitness trend with eating clean, being fit, hashtag “gym is life” that it makes a lot of us feel insecure about ourselves even more. I know I do. But on the flip side, it does make me more aware of what kind of food I’m putting in my body, and I’m slowly learning to eliminate certain junk from my diet so that I could just feel better and more energized throughout the day. I do love to exercise and be active, so I think that helps balance my diet out..sometimes lol. I think it’s wonderful that you do water aerobics! That actually sounds really fun, I might want to try that out someday! Anyways, thank you for being you and posting such great personal anecdotes! I look forward to reading more! Take care! 🙂

    1. Thanks so much Kirstie! You make such a great point I hadn’t thought of. I think part of my not wanting to ask for help is the feminist too. I don’t want to have to need someone else and not just because of my disability. You’re so right about the trend of clean eating and being super fit and all that. I get so frustrated with that sometimes because it’s just not that easy for everyone and gym life is certainly something I can’t do. Like you though, I will say doing water aerobics has made me want to improve how I eat. I never really cared that much about taking care of my body because I felt like it was subpar anyway because of my MD but as I’ve gotten older, I’ve definitely changed my attitude on that. I actually really enjoy the water aerobics too! I can do pretty much everything everyone else can in the water too which feels great. It’s a good work out for sure. Thanks so much for the encouraging comment 🙂

  3. Hi Jackie,

    Thank you so much for sharing. I’m an occupational therapy student and I just wanted to say how brave and strong you are to share about MD. I think asking for help has also been a hard challenge for me. I often do not like to ask for help even when I cannot reach high enough in the market or my cabinet. After a while, I learned that asking for help doesn’t make you less than or weak, I often times feel like asking for help can make a person feel good about themselves for helping. As I’m reading your post I can feel your frustration when it comes to dealing with your MD. As a future OT, I was wondering what type of advice you would give us in working with the MD population? I often feel that the textbook understanding of MD comes no where near having a real understanding of the person living with it. Thanks again for sharing Jackie, I wish you all the best.


    1. Hi Angela. That’s very nice of you to say, thank you very much. I feel like it’s pretty easy just to talk about myself but it always feels great to know what I write resonates with someone or means something to them. That’s a good question too. There are so many different kinds of MD and each person is different or has different needs but I think the best advice I could give would be to just be as sensitive as possible to the patient with MD’s needs and treat them just like any other person or any other patient. Sometimes we’re going to be frustrated or might be afraid to talk about our needs/situation (just like I don’t always like asking for help) but having a comforting and positive person on the other end really makes a difference. Hopefully that helps somewhat 🙂 Thanks Angela!

  4. Hi Jackie!
    My name is Esther and I am an Occupational Therapy student at Loma Linda University. As I was reading your blog post, you truly inspired me about your perserverance in battling your fight with MD. Your strength inspires to continue moving positively forward despite any shortcomings/challenges in my life. I guess individuals tend to “complain” when life does not pan out perfectly as they envision it. However, through resilience and determination on short and long term goals even with the hiccups along the path… we can achieve anything. You are the product of that perserverence and resilience, Jackie.
    I wanted to comment that I admire you being open in how physically your body changes as you get older. I am in mid-twenties and my boyfriend is going to turn 31 this coming week! Yikes! He told me that he notices his energy levels throughout the day decreases, more body aches, and his metabolism is not on “fire” as when he was in his early-mid-twenties. We all know guys can eat a lot but I eat a lot too ☺. Similar to you, I do not like to appear physically weak in front of others and would try to the best of my physical abilities to accomplish a task (ie. lifting heavy water cases or carrying heavy grocery bulk items from Costco). So to combat my insecurity of appearing weak, I try to attend the gym religiously (excluding weekends lol) and perform cardio either HIIT intervals on the spin bike or run on the treadmill, lift weights. Water aberobics definitely sounds challenging as your body would have to resist the water and be able to stay afloat when completing your exercises. I do feel your pain of not wanting to do physical exercises when your body is in pain but you still manage to do it. You push yourself which I admire but to a certain limit that is the most comfortable for you. Healthy living is definitely a huge challenge for majority of individuals whether young or old because there are many factors that can take place in life. Life does throw you curveballs but it is individuals like you who turn that curveball into a feasible challenge that can be accomplished with great success. Keep up the great posts and your positive outlook on life, Jackie! An inspiration to OTs and to anyone!

    Warm regards,

    1. Esther…thank you so much! Your post brought me to the brink of tears (happy tears!). I appreciate all of your kind words and for sharing some of your story too. I’m coming up on 32 and like your boyfriend, I can attest to the physical challenges that came once I turned 30. It’s the strangest thing, it’s just another birthday but it’s like your body completely changes. I was always very very skinny growing up because of my MD, to the point I got teased so I’m partially glad my metabolism slowed down so I finally am a more healthy weight and I feel better about how I look more overall too. It’s just that keeping up the motivation to go to water aerobics and eat healthy that’s tough. You said something similar to something my best friend just said recently too and that’s that despite my challenges, despite things being hard for me, I still get out of the house and I still do the things I want to do. I really try to be more grateful for that and not focus so much on what I can’t do (though it’s really hard sometimes!). I thank you very much for your encouraging post and doing what you do and all that you will do in the future as an OT student! All the best!

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