Seven years and the whole truth

I’ve been sick for seven years today (well yesterday, but I didn’t get around to editing and posting this until today).

I was one month into my first semester of university when it all started. I had just survived my first round of midterms, calculus, biology and physics all in one week, my chemistry midterm just around the corner. I was fairly certain I had bombed my physics exam. In fact, I did do rather horribly on that test, but I did less horribly than a lot of other students and so despite how it felt when I walked out of that exam room, it ended up not being the end of the world.

The end of the world, well, the end of my world, was two days away.

My transition from high school to university, from child to adult, and my transition from healthy to sick happened at the same time and so my entire adult life thus far has been lived with illness. Still, it wasn’t always like this. Once I was sick, there were other transitions to make. Sick to more sick, school to medical withdrawal, employed to unemployed, outpatient to inpatient.

The end of my world was going to come around again and again.

I’ve been sick for seven years today.

And I’m not exactly sure how I feel about it. I feel like I’ve been doing this forever…and like I’m still getting used to it. I feel like I’m on top of things…and like I have no idea what I’m doing.

Two years ago I marked this day by writing a post about five positives that had come from being sick. Those positives are all still true and that list has grown. And then last year I marked this day with one of my favourite posts about how I would rather have a dragon than be a dragon, how I wouldn’t give up everything about me and my life to not be sick anymore. That is also still true.

But none of that is the whole truth.

I could write another list of things I’m grateful for or lessons I’ve learned. It would be a long list, I know, because instead of writing that list I’m living it. I’m delighting in that list every day. On the flip side, I could also write a list of things I’m unhappy about and the dead end roads I’ve been sent down. I would never choose to write it out, but I know it exists because I live that list, too.

The whole truth includes both. And so much more.

The whole truth is that I feel a lot of things all at the same time. And how I feel is always changing.

So this year I’m going to mark this day by writing about how I feel today. Right now.

I feel grateful, because even though I’m not where I want to be with my health I know that things could be, and have been, worse. I feel hopeful, because I have purpose and I have things to look forward to. I feel lucky, because I’m loved and supported. I feel excited, because there are so many things I want to learn more about and I have the resources to do so. And I feel content, because life is good.

But I also feel stuck, because my health could still be so much better and I don’t know where to go from here. I feel discouraged, because there is no end in sight. I feel left out, because I can’t keep up with the people around me. I feel worn down from being sick every day. And I feel tired, because life is hard.

And today I also feel worried, because I have another infection around my brand new central line. I feel helpless because I don’t know why this keeps happening and I don’t know how to prevent it. I feel vulnerable, because this line that is saving my life is also making my life a lot more difficult. And I feel uneasy, because this is my fifth tunneled line in less than two years and the scars on my chest have turned into a game of connect the dots that is moving too fast for my liking.

connect-the-dots

That’s the whole truth. The good and the bad, the gratitude and the exhaustion, the hope and the fear. I’ve come to realize the importance of acknowledging the whole truth, because that acknowledgement is what allows me to accept it, and that acceptance is what allows me to choose how to deal with it. It is a choice, and I choose to face it. I choose to take that whole truth and do my best to make the best of it.

And that’s always changing, too. Doing my best and making the best of things looks different every day.

Today it probably looks quite strange. Today I’m genuinely a little in awe of the staph bacteria that won’t leave me alone. I admire its resilience, because despite the many thousands of milligrams of antibiotics that have been thrown its way, it keeps coming back. That’s pretty impressive! And the bacteria isn’t inherently evil, it’s just doing what it’s biologically programmed to do. Survive. Sure I wish the staph wasn’t thriving at my expense, but at least one of us is thriving? I’ve also spent some time learning more about the process of culturing bacteria and testing sensitivities in the lab and the nerd in me is pleased.

So anyway, that’s what today looks like. Some good stuff but then also some bad stuff, and some nerdy empathizing with bacteria stuff, because feeling impressed is better than feeling helpless, and learning new things is better than worrying about things I can’t change.

In another year how I’m feeling and how I’m dealing will probably look very different, but the one thing that won’t change is that I will still be choosing to do my best. Whatever that looks like.

Just hopefully next year no bacteria are involved!

 

 

13 thoughts on “Seven years and the whole truth

  1. Thank you so much for continuing to share your challenging journey. You are an incredible writer, and behind that, an incredible thinker, feeler and person. The choices you make on your journey are inspiring.

  2. It is a horrible anniversary to have yet once again you have made it a positive, I admire you for that. I have a little girl I work with who is three, she receives 16 hours of antibiotics a day through her central line, which has also become infected many times. She also has a g-tube and is restricted to a chair or her crib for 16 hours a day/night so that she can get her medication. She was just recently hospitalized again for a yeast infection in her central line, which had to be moved again, I think this is number 5 on that. She is a fighter and still sees so much Joy in life, and she is a pistol, she has to be to move through this part of her life, even at the age of 3.

    My best to you,
    Meredith

    • It makes me sad to think of little ones having to go through all of this, but then again they tend to be more resilient than us supposed “grown-ups”! I hope she stays as well as possible 🙂

  3. Agree with Jackie – a breakup is in order – and with Anya. To Rosemary, I send get well wishes from a fellow Aussie, and to you, Catherine, I seriously hope you can knock that infection for six. You don’t need me to tell you to take extra care but I will be thinking of you with concern and sending healing wishes.

  4. I’m so sorry to hear about your access site infection. That entire situation sounds incredibly frustrating and scary.

    Here’s to someday in the future, no longer having an anniversary (because you and illness will have broken up).

  5. I’m eternally in awe of and inspired by your ability to see the light amongst the dark. I hope that health and science will be on your side as you continue to commemorate this anniversary each year.

  6. Yes , I agree life is a challenge but it a blessing if you can understand it n process it. I have some medical issues that I inherited . I hope n pray that have strength n healing n honest people in your life. Do you ever go out a little bit. love yourself n others you will be rewarded on the in . Palms 30.2

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