Words by Julie - Living Life With Paralysis

Hard 7

I have a couple of friends who took their already fit bodys and turned them into lean, mean, muscle machines. They worked tirelessly every day at the gym, watched what they ate and were able to surpass their goals. I was thinking about them today. I admire their ability to be so disciplined – to get up early, eat no junk and sculpt their bodies. In no way am I trying to lesson their efforts – if anything it makes me appreciate it more, because as I was lifting two pounds all I could think about what how hard it was.

Yes, two pounds. And it just about killed me. Ask my Mom and Sharon, they were there with me. Two pounds in my hands, doing anterior deltoid lifts while seated in my wheelchair. Three sets of 15 reps. Isolating muscles that have never been isolated before. Gary is my OT, and he is awesome. I feel that sometimes I throw that word around too often, applying it in situations where it may not always be true. But it is true. He knows every muscle that I am working, that needs to be worked, that is beside the muscles being worked and he explains everything as we go. Do you know the 17 muscles attached to the scapula? He knows I have a mind for science and he is working hard to fill it. Anyway, back to my original point.

Everything is hard. Even sitting up is hard. I still have the back brace on, that digs into my ribs and my pelvis. It restricts my breathing somewhat and I guess I am glad that I can not feel what it is doing to my pelvis. Tonight I sat in my wheelchair for two hours, and that was too long. I have talked about blood pressure before, and the fact that mine is so low? Well today I hit a new low; 79/52. I was on the elevation board at PT, it is designed to get you into a vertical position, but gradually. Good thing it is gradual because I didn’t get past 40 degrees from horizontal. Kristen started me at 30 degrees, and they leave me there for four minutes, giving my body time to adjust. The whole purpose is to retrain my circulatory system. The only good thing was that I recover well, after she lowered me back down my systolic recovered to 103. Nice, but it’s hard constantly teetering on the edge of blacking out.

The other thing that I have been finding hard is constantly being reminded of “when you do this yourself”. Let me back up. The day after tomorrow will be four weeks since I was hit by a guy who chose to not pay attention to what he was supposed to be doing. Driving. Only four weeks. Drs thought I would be in critical care for two and a half. So here I am, in my second week of rehab. To the nurses I am this young healthy patient, who is with it, can roll in bed (grabbing the bed rails and having her knee lifted), can help get herself dressed and feed herself. So they, of course, think I am ready to do self-catheterization and my own bowel care. And I don’t mean over the toilet. They are not telling me to, but every new nurse, every day starts out saying “when you do this yourself” which I am so tired of hearing. I know that I will have to do it myself, and, when the time comes, I will do it. But I am not ready yet.
Remember that back brace I mentioned before? It goes from my chest (just below my top ribs) to my pelvis. I challenge you to try to see your private parts and insert a catheter without bending at the waist. I am still healing, I still wear hardware, my nose and my hair still hurt. My forehead is ugly. I am not recovered. I still need support from the nurses and to be told that it will get better. I feel misunderstood. And that is hard.

I just finished brushing my teeth and washing my face. Everyone around me is already snoring (thanks for the earplugs Lara). As I was getting ready for bed I was thinking of all the other things that are so hard. I can’t and don’t want to list them all. I am not a complainer. But the hardest thing of all, that I can’t and won’t write about now is how much I miss my family. I chose to marry Theo and we chose to have two beautiful children. I did not choose to be away from them for three months of their lives. That is hard.


  • Sending love and strength to get through the hardest times. You are so open, Julie. Hope you get peaceful rest tonight.

  • Jan Duffield says:

    I've been following your blog, Julie, and I'm really enjoying it. That sounds kinda creepy, like I'm enjoying the fact that you've had this life altering event and that's not it at all. I'm enjoying your introspection, your thought-provoking ideas and the fact that you write just as you speak, and i can SO hear you saying all this stuff! 3 random thoughts : 1. Do you watch Suits?! I joined it in the 2nd season, but have gone back to watch each episode in order. I've got about 5 more episodes, then I'm caught up. Haven't enjoyed a TV show so much in years!
    2. Dan (my hubby) had a bad motorcycle accident as a teen (his fault) and ended up with permanent paralysis in his dominant arm. He has some movement but he had to become left handed. His recovery was slow, but steady, just like yours. He went on to live a full, rich life. Yes, there are things he can't do but the guy is remarkably resourceful at figuring out how to do stuff on his own with only 1 arm. I KNOW you will be exactly the same–slow but steady recovery, and damned resourceful at figuring out how to do stuff with limited use of your legs. 3. You now have a good reason to get Theo to build you raised beds, so you can keep gardening! No more bending over to weed!!
    Told you my thoughts were random! Keep writing. It's excellent mental therapy!


  • Ernest Dow says:

    "Empathy: the ability to understand and share the feelings of another."
    Sorry everything's so hard right now. Thank you for making the effort to write in enough detail that others (us) may to some small degree empathize and share your hardship. Praying for strength and endurance.

  • Hi Mrs. Sawchuk! Three months may seem like a long time right now, but it's really just a short time when you think of all that is behind and ahead of you! You'll get through this just as you've mounted all the other struggles in you life thus far! Things will get easier!! Just know you are loved SO much!! And you've got so many people rooting for you! Keep your eyes fixed forward. You are strong and resilient. Praying and thinking of you all the time!
    P.S. I don't think your forehead is ugly at all!! You're beautiful as always, inside and out!

  • Linda says:

    Hi Julie. No matter what you're feeling it's the right feeling FOR YOU! No need to ever justify, explain or validate.

  • Lindsay says:

    Thank you for your honesty.

  • Brooke Ohm says:

    Remember tough times don't last, tough people do. Perfect way to describe you 🙂

    Remember, you got this.

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