When I Forget Just How 'Not Normal' My Life With Chronic Illness Is


I had an experience this week that was a bit jarring.

I texted a friend about my upcoming surgery. She replied with what some might call “taking the Lord’s name in vain,” and then followed that with, “Is that your last surgery for the year?”

After her reply, I sat for a moment and thought to myself about her question. Had it really been that many? Was it really that crazy of a year?  Is it really that bad?

The answer is yes, unfortunately.

While none of my surgeries have or likely will require hospital stays, and two of them were done under sedation, not general anesthesia, this scheduled surgery is the fourth surgery since February. It is also the second to happen within two months. And I was most intrigued, as I pondered these operations, by the fact that none of them were in any way related to another. I just needed surgery for four different reasons this year.

And then it hit me. My life is not “normal.”

My psychotherapist would now ask, “What does normal even mean?” That would be a good point, because we all lead different lives in different ways under different circumstances. But there is also this sense of understanding that my life is not what most people envision when they envision a life. I, however, don’t have the luxury of envisioning anything else at the moment.

This is my life, for better or for worse, for poorer, and in sickness —because there isn’t any richer or health to speak of most days. This is what I am offered, and I take it with grace and gratefulness.  I mean, there are days I also take it hesitantly and begrudgingly, but for the most part I cope well with my present state.

My dad joked a couple weeks ago that I was probably in Recovery 1 for a long time after surgery because I was fighting the nurses. But when we saw the surgeon a few days later for post-operative appointment 1, he said I was sweet and cordial, or something like that. I was a bit preoccupied with the splints about to be removed from my nostrils, but it was definitely an expression of how lovely a patient I had been.

I’m just very accustomed to being sick, so I see no point in being upset by being so. Pain, at times, can make my demeanor less lovely, especially if it isn’t well controlled and I am also exhausted, but in recovery rooms they offer you nearly all the pain meds you want and you’ve just awoken from the deepest possible sleep. So, apparently, even in a semi conscious state, I cope well with my present state. It isn’t easy living this way.

But there is also a wonderful way of adjusting and adapting that has become a part of my being while experiencing this life. You aren’t getting the life that most envision when they envision a life, so you begin to develop the skill of adaptation, and you begin to sink into the role you have been given to play. Eventually, you become that character, and the idea that four surgeries is a lot of surgeries needs to be pointed out by the incredulity of a friend.

Because, in a sense, I forgot that my life isn’t normal. It is normal for me. It is my normal. And it might not stay my normal forever, but it is the life I have now.

It does me little good to envision a husband, 2.5 kids, a white picket fence, and a jogging stroller at this point. It does me little good to envision a life filled with miraculous cures for all that ails me, as well. But I do hold some hope for cures to some of what ails me in the future. With or without cures, however, I just keep on living my life. Day in. Day out. Life. It might not be what I envisioned, but I am starting to learn that might not be all bad.

Now, if you don’t have a chronic illness, you might not understand that statement. Healthy people rarely stop to look at the benefits of illness, but for those of us who are always ill, it is a necessity. Not looking at the positives can be deadly for some of us with chronic illness, so we do our best to keep them in mind.

Today, I looked at the ways my illness has transformed me in good ways. My grace and gratefulness are appearing and increasing. My ability to adapt to situations others might find impossible keeps me going long after others are frozen in their inability to address a crisis. My list of coping strategies is long and keeps me safe and healthy and at peace in all sorts of ways. And my willingness to embrace life and love it is returning.

I didn’t lose my willingness to embrace life and love it when I became sick. I lost it during the few years where things in my life were going very well. I was getting my degree and raising my child and living free from crises and feeling good. And that was went I became caught up in attaining things and improving in ways that were more superficial than that which I want to have and be in my life now.

Becoming sick, in some ways, brought me back to myself. And in other ways it created an even better self. I’m more patient, and less demanding, and less perfectionistic, and more willing to look past outer shells and look deeply into the souls beneath.

I’m a better person with four surgeries than I am without four surgeries. This will be my last surgery for the year, if the universe is kind. I have six months of rehab to get me back to full (in my chronically ill terms) function, so barring life-threatening emergency, I am definitely not scheduling any more surgery for a long time. And this year has been hard. There is no denying that. Tears have been shed. Angry rants at the sky have happened. There has been a lot of pain and a lot of struggle. But there has been so much good. I suspect that I still have not grasped the fullness of how much good has happened and how much might happen still because of, not in spite of, my illness. No, my life is not “normal.” But I am not convinced I should want it to be such.

Normal hasn’t made me who I am. Normal hasn’t bent me until I was certain I would break. Normal hasn’t honed skills. Normal hasn’t challenged preconceptions and shattered stereotypes. Normal hasn’t taught me all the lessons and given me all of the growth and all of the strength and all of the beauty.

Chronic illness gave me far more than “normal” ever could. There are days I will long for normal, and I will cry over things and fight over things and wish things were different in many a moment. But, in the end, I always come back to the knowledge that I am happy with my life not fitting the pattern I once envisioned.

It is OK to forget my life is not normal. That means I am so busy living mine as it is that I haven’t bothered to compare it to that of everyone else. And I am determined to keep on loving it, not just living it, through the trials and the joys — and because of the trials and the joys.

My life is not normal. And I love it.

Follow this journey at Learning to Be Whole.


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