I spent this past week visiting with family. Some that I had not seen in 4 months, some for 8, some for longer, but all were wonderful to see and catch up with.

But of course, with family, or at least my family, no visit is ever simply nice. Rather, no visit is ever simple.

Contrary to my confidant optimism in my previous post, my body decided to crack a little. More than a little. I ended up dislocating a number of joints, and dealt with some heart rate and blood pressure issues among other exciting surprises.

And I was disappointed. I always am when I feel betrayed my my body, when it gets in the way of my plans. And I was worried. Some of the symptoms I experienced were much more severe than usual.

But I knew how to handle my disappointment and worry. The feelings are old friends, the kind that you’d rather avoid, but constantly end up bumping into, and I’ve learned to live my life in spite of their presence.

I also knew how to handle the pain. I retreated, searching for quiet within myself and the space around me, and waited for the waves to pass.

As normal as this abnormal situation was to me, a situation with new symptoms that require extraordinary measures above those that I use on a daily basis, it most certainly wasn’t normal to my family.

They know about my condition, of course, and they read this blog. They are aware of the various diagnoses and theories floating around. And they know that this is something I live with, that I have lived with for years now.

But they are not used to seeing it. They are not used to seeing me fall, how quickly it happens, how dramatically. They have not yet understood that so many aspects of this life are outside of my control.

When they first greeted me, many members of my family complimented me on my miraculous progress over however long it had been since they’d last seen me. Each individual attributed this progress to something different, but the compliment always circled back to what I personally have been able to achieve.

And it’s true. My baseline, my day to day living, has improved significantly over the past year.

But for some reason, getting these compliments on my ‘achievements’, in terms of my health made me very uncomfortable. They made me defensive.

At first I couldn’t figure out why. After all, I have worked incredibly hard, every day, to increase my strength and stamina. I have put a staggering amount of time and effort into tracking my symptoms on various treatment plans, making charts, and experimenting with various lifestyle modifications.

But still, receiving praise for the results of the work felt wrong. Not that it isn’t something to celebrate, because it is. And not that I don’t wish to acknowledge the effort that I have put in.

By placing the entire success, or even the majority of the success on my shoulders, it makes me responsible, not only for the work that I put in, but for the results of that work. And it makes me equally responsible for the failures. If my fortitude is what has pulled me out of the mobility scooter, then what does it say for those times when I crash and lose my ability to walk? When I am curled up in pain, exhausted?

Sometimes, no matter how hard I work, I still experience flares. My body still revolts. And I refuse to claim personal, mental, or emotional responsibility for that. There are simply too many factors involved.

This week, I experienced one of those flares. It was not the worst I’ve experienced, nor was it the easiest. And it had a new twist, as all the best falls do.

As I huddled under blankets with ice packs and heating pads, I witnessed my family search desperately for the cause. Something had to be at fault, and there had to be a solution.

Even my beautiful 5 year old cousin grew upset with me when I didn’t eat the fruit she offered, certain that it would make me healthy.

And I could delve into the various ways this struggle presented itself. I could analyze how it made me feel. I could wonder at why it made me feel that way. And I could try to come up with solutions.

But when it comes down to it, witnessing this is still new for my family. My progress is startlingly new to them, as are my flares. They are trying to adjust, to understand, to accept, and to figure out their own equilibrium.

And, all things considered, it is simply nice to have people in my life that love and care about me enough to struggle with this path my life has taken.

I spent this week frustrated and loved, stressed and cared for. In short, a typical visit with family.

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  • Auntie Cal Shell says:

    Ophira I am happy I had a chance to see you today for a short visit. Your written words speak volumes and helps me connect with you at an unspoken level. I want you to know you are often thought of and much loved.

    • Hi Auntie Cal,
      I just realized that my reply was never actually published! Thank you so much for your comment, I can’t tell you how much it means to me that you’re reading the blog and I was so happy to get the chance to visit with you for a bit in Winnipeg. Sending so much love your way.

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