Being Sick Changes You

disability

Being sick changes you.

For a host of different reasons, I’ve caught myself daydreaming recently–remembering moments in my pre-sick life where I felt normal. My sense of normal was pretty ridiculous. I used to travel a lot.

I’ve been white water rafting on the Nile River in Uganda.

I went “surfing” off the Pacific coast of rural Nicaragua.

Spent the night in the executive lounge in the Amsterdam airport.

Strolled the tea fields outside Nairobi, Kenya.

Went deep sea fishing in Aruba.

Napa Valley. Sedona. Chicago.

I did Las Vegas on halloween.

I moved to San Francisco for a few months with friends and came home with a rescue dog.

I dug a hole for a tree in Bolivia.

Got caught in a rip tide in Costa Rica and almost drowned.

Strolled through an abandoned Syrian bunker.

Did medical work in Nicaragua, Kenya, and Bolivia.

Bungee jumped over gator infested waters.

Been on safari in Africa.

Walked a first century staircase in Israel.

On top of traveling, I used to work in pretty intense acute care environments.

I treated a patient with full blown human rabies and became exposed myself.

I watched a mother pull out the IV access line of her sick daughter.

I held the hand of a 30-something woman with autoimmune disease whose heart and lungs had failed and whose options had run out and with a tear falling from her eye pleaded, “Don’t give up on me.”

I watched the same woman take her last breath as the machines were turned off a few days later.

A patient pleaded with me to write his story just hours before he was placed on a ventilator and then died a week later.

I’ve seen patients be brought back to life after dying.

I caught a baby as he was being born.

I restrained a patient who had attacked a fellow nurse in the middle of the night.

I’ve told a family that their loved one’s heart was no longer beating.

Body bags. CPR. Ran a code on a nurse who crashed while on shift.

Walked into patient rooms covered in blood with no patient in sight–on a couple different occasions.

Saw a patient with elephantiasis in the mountains in northern Nicaragua.

Held a softball sized tumor freshly removed from an abdomen in Kenya.

These experiences once defined me. I was fun. I was pretty much down for anything. I was quick on my feet. Never lost my cool. I was deliberate. Reliable. I could lay back and rock in a hammock ten minutes from the Costa Rican boarder and the next day translate for an American doctor telling a mother her son had signs of cancer. I used to go to the bar at 8am with my coworkers after working a crazy night shift. I used to be able to be in any country and feel comfortable. To my coworkers surprise, I used to be able to remain calm and collected when patients would lose lines for a drug with a 4 minute half life.

This was who I was. Now, I’m not quite sure.¬†

I think about these experiences while I’m laying getting my infusions. In the bleak greyness of the hospital infusion center, I can close my eyes and remember what it felt like to swim in the ten, fifteen foot tall waves in Nicaragua. I remember the days that I was on the other side of the infusion–hooking my patients up to the same drug that I now need.

I wonder who I am now. My exciting life stopped in an instant over three years ago and now I’m reduced to doctor appointments, disability hearings, tests, infusions.

Susannah Cahalan, who suffered from a debilitating autoimmune condition, in her memoir, Brain on Fire, explains it so much better than I can:

“Now I think that this shame emerged out of the precarious balancing act between fear of loss and acceptance of loss. Yes, I could once again read and write and make to-do lists, but I had lost confidence and a sense of self. Who am I? Am I a person who cowers in fear at the back of a spin class, avoiding everyone’s gaze? This uncertainty about who I am, this confusion over where I truly was in the time line of my illness and recovery, was ultimately the deeper source of the shame. A part of my soul believed that I would never be myself, the carefree, confident Susannah, again.

‘How are you?’ people continued to ask me constantly.

How was I? I didn’t even know who ‘I’ was anymore.”

She writes, “Will I ever again regain that spark that defines who I am?”

I’m not the same person I was before and I won’t ever be again. Being sick changes you, and I’m not quite sure how it changed me yet–all I know is that it did.

19 Comments on “Being Sick Changes You

  1. Sarah, you are still the same ole person I met over 15 years ago in high school…. funny, amicable, intelligent, and an all around great person to be around. Keep on keepin on!

  2. Hi Sarah,
    Powerful post!!! I will be sharing widely via ExceptionalNurse.com, the nonprofit resource for nurses with disabilities.
    So many nurses and nursing students will benefit from reading your story.
    Stay strong!!!

    Donna Maheady

  3. The things that don’t change don’t necessarily validate those that do, but I’m so thankful for our friendship. It’s only one, small unchanged thing. But it’s a good one.

  4. You’re loved unconditionally! And, btw, in your recitation of your world adventures, you forgot to mention being caught in a microburst while white water rafting on the confluence of the Potomac and Shenandoah Rivers and nearly drowning…:)

  5. Yo. This was excellent. I think you’ve captured your ideas/struggles splendidly. I enjoyed the contrasting, just as when we spoke at Yorgos. Articulating the struggles is always the hardest part.
    RE: writing, thoughts, etc…
    You’re right. You’re super concise. I love that part about your writing.
    Things to consider for editing aspects: I love the slam of I’ve done/I used to… it’s great. However, all things in moderation. I recommend 3-4 examples max. It also gets repetitive and causes one to glaze over it after a bit. Instead of finding extremes, find the ones that had the most impact on you. It’ll be easier for you to convey its essence if you can place a sensation on the experience. It leaves the reader coming away ‘feeling’ something from an experience you had.
    2. I love the quote you used. BUT. Don’t use it for the other thing we’re talking about. Use that to kick you off on writing what it’s done to you. I know it summarizes your experience well and I imagine for so many others, but yours is still different from hers. Read the paragraph 5 times. Open a doc, write what you remember from it. Then take that and turn it into your own words and apply it to you. In the end, I want to read about you and your experience. I also want to read about hers now, but the goal is to make ME want YOU (lol. so many jokes here).

  6. Sarah I will not pretend to know what you are truly going through, all I know is that I see you as a strong friend to people I know and a strong person all around-oh and by the way great to my Sweet Savi- she adores you I can tell. Amazing writing. Know we are always here and rooting for you just like in the old days:) Mimi

    • Mimi- thanks so much for this, it really means a lot. I adore Savannah right back! she makes me smile more than anything these days!

  7. Hi Sarah,

    I can relate. Once I was carefree and would travel around the world doing volunteer gigs in between short-term jobs and long-term education. I was always up for a new adventure and had confidence that, wherever it might lead, I could handle it.

    This is probably the hardest part about being sick. I keep trying to figure out my life, but when I try to make a decision I have no idea if I will be able to handle it. I feel like some aspect of my personality has fundamentally changed. I know that feeling when you think back and can just feel how it felt when… It was glorious.

    I have Sjogren’s and POTS. I need a career transition and want to be a teacher. I doubt every day that I can handle it. On the other hand, I am not sick enough for disability nor would it support me, thanks to my carefree past. I never thought that my body would prevent me from doing what I loved. Now I think it pretty likely.

    Thank you for sharing this experience. No doubt it’s hard to grasp for those who have not gone through it. I get it.

    • Hi Sarah

      You have expressed so beautifully how most of us who have had a former ‘big life’ now feel – both grateful for those experiences and in awe of our then courage and ability to float the big stuff and pack so many adventures into (what seems now) a relatively short time frame.

      I too lived a full life and go ‘struck’ with Sjogrens, Reynauds, Dysautonomia, Fibro and all those other fabulous add ons or accessory conditions ones accumulates along the way. I also have a rare form of blood/bone marrow cancer that thankfully is in slumber mode.

      My philosophy on life now is that I am living my best life (with a mental note to my conditions to ‘phaff off’) and giving back to those similarly afflicted. I now counsel others with AI conditions and that is fulfilling and makes me aware of just how much knowledge and information I have collected over the years. While I am unable physically to do a lot my intellect is still there and is my arohanui (big love) for those around me – all these things I can share while being unwell too.

      Keep writing you have many lovely things to say and I will keep reading.

      Arohanui,
      Sandra from New Zealand xx

    • Thanks for reading, Nicole. I’m sorry you are struggling as well!

  8. Life is really unpredictable and that which we think is permanent and solid turns out to be elusive and ever changing form; but things continue to change. When I’m in the nursing side I feel confident but when I’m in the sick side I’m a chicken. Sometimes is a gift to be on the other side and taste that taste so you know how it feels.

  9. Besides the adventures, just missing “work life,” which is fulfilling in so many ways. But our very personalities are not constant, we learn to value different, sometimes subtle things. Being chronically ill is like being a mountain climber in this country. Not for the faint of heart. There are also people who may be close and unsympathetic – be careful of those people. There is also a future and we never know what it may hold. Another thing I have learned as a “Zebra” is that you are not alone. It may seem that way, but the world is too big and everyone partakes of suffering. You are never alone.

    • Wow Laura, I love your comments. So true, it is not for the faint of heart. Thanks for reading.

  10. Amazing piece! I know I’m not the same as I was before my illness. I have Intracranial Hypertension and when it forced me to go on Disability, I was at the top of my game and had awesome career goals. Now my memory isn’t quite as sharp as it once was, I feel like I’ve “lost” a lot of nursing knowledge, but I don’t know if that’s from being out of practice for so long or the many insults my brain has had. I see my Director making decisions that don’t occur to me even though I’ve had aspirations of moving into her position someday.
    I ache for my yesterdays, look back on the Nurse and person I once was, all of the friends that I had who just walked out of my life as I got sicker and sicker. But, I suppose, the past is the past as they say and we can’t go back, we can only move forward and hope for better days ahead.
    Your piece really touched me Sarah. Thanks for writing it!

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