Tuesday, March 19, 2013

The Smell of the Sheets

I went to lie down on a stretcher this morning and as I got comfortable on my back and waited for the radiology technician to come back in the room, I was struck by a smell. A familiar smell. One that prompted my brain to flash various images through my head, one right after the other. Images of different procedures, some painful and some not. Images of myself sitting in a hospital bed in various rooms throughout this particular hospital where I was having my test done. Images of  emergency rooms where I have sat.

What was this smell? I finally realized, while laying on the stretcher this morning, that it was the smell of the hospital sheet covering the stretcher. All of a sudden, I realized that the smell of the hospital sheet is as commonplace to me as the smell of fresh baked cookies or bread to someone else. It is very distinct. The smell was representative of all the stretchers I have laid upon in the past several years. There are too many to count. The sheets have laid below or on top of my struggling body as I have tossed and turned in the middle of the night in my hospital room, while I have vomited on an emergency room stretcher, and while a tube has been put down my airway and into my lungs during a procedure. The smell of the sheets symbolizes my life as a patient.

I realized as I was laying there this morning that I had not smelled the sheets in exactly three months, which is when I had my last procedure or test done, excluding laboratory tests. This particular test on this morning was an ultrasound of my kidneys and bladder and was painless, as well as easy for me. Basically a walk in the park. No needles, no gagging, no fear of the unknown, as I have encountered with so many other tests and procedures throughout the past few years. But the smell of the sheets reminds me of those times and the struggles I have had.

Last fall I made a very thought out decision to see a therapist/counselor who has a specialty in seeing people with chronic illness. I was at the point where I felt like I needed some help in learning how to cope with my illness and the multitude of issues surrounding being forty-one years old and disabled. I did not like the fact that my illness seemed to consume most of my conversations with my fiancé, friends, and family. I was finding it harder and harder to discuss anything else besides my symptoms, treatments, fears, and anxiety. I wanted more out of my relationships than that. Easier said than done when you have an illness that you are physically aware of almost every minute of the day. It wasn't that I did not want to learn more about Sjogren's, continue my book about it, or socialize with other Sjogren's sufferers, but rather I wanted to find a way to have Sjogren's be a part of my life instead of the focus of it.

I was also starting to struggle with significant anxiety in relation to upcoming procedures and I was having nightmares about them as well. Not surprising considering what I have gone through in the past couple of years and even before that with my lymphoma diagnosis, both in regards to procedures and medical experiences in general. I have had incisions made in the tops of my feet and had thin wires threaded up along the lymph vessels of my legs. I have woken up during a bronchoscopy because I was not properly sedated. I have had scary experiences with my heart in the emergency room and honestly thought I was going to die. The list goes on and on.

So I have been working diligently with this therapist. I have not mentioned, previous to this posting, this fact to many people. Actually only my fiancé, parents, and minister have known. I have not kept it to myself because I am embarrassed about seeing a therapist, but I guess I did not want people to know exactly how much I do emotionally struggle with having this illness. I want to be viewed and known as a warrior; a person who can handle all this illness business without much difficulty.

Yeah, I know. That's crap. It's the people who know they need help that are the warriors.

I have realized recently how much working with this therapist has helped me. Many times when people have trauma issues of any type, there are certain triggers that can bring back memories and feelings surrounding the traumatic event. For me, sometimes it is the smell of the sheets. The smell that brings back those images and reminds me of the pain, fear, and uncertainty that surrounds each difficult medical event. But this morning was much different when I recognized the smell of the sheets. When the smell prompted me to play back some of the difficult procedures and medical experiences I have had, mostly over the past year, I did not have the anxiety. Rather, I remembered them just as events that took place. Events that are a part of my journey. Were the events unpleasant? Yes. But the memories no longer haunt me while I sleep.

Therapy has also made a difference in my interpersonal relationships. Sjogren's is still a part of my conversations at times. It needs to be as it is part of who I am. However I have recently found myself able to consistently focus on other aspects of my life in conversations and dealings with others. Because despite my continued physical struggles, I no longer think of myself primarily as a sick person. Instead, I think of myself as a person who has an illness. There is a huge difference. That difference actually made me realize something about one night last week. I had attended a social event with my fiancé and five friends that lasted about four hours. Not once in that time of conversing and socializing did the topic of my health come up. That is a very good thing. Not because I don't ever want to talk about it or have people ask how I am doing but because it means that I have been able to have a life outside of Sjogren's.

The smell of the sheets this morning transported me back in time to my struggles, but not to my anxiety and fear. This time the smell was a strong reminder to me of my strength and my ability to endure. It reminded me that yes, I am a patient. But that is not all I am. And so I have chosen to share this experience with you. To remind you that you don't always have to be brave and you don't always have to be strong. It is OK to ask for help. It is OK to be human.


  1. Cheers to your humanity, Chris! Great post!

  2. I related to this piece in so many ways. I love my therapist and she has been an amazing part of my life. (Her husband was actually a pall bearer at Frank's funeral.)

    You go to therapy when you are strong enough to face things; never from a point of weakness. This is just more proof that you ARE a warrior!

    And, I had to go back and read the last two paragraphs a few more times. Because - if I was as talented a writer as you - I could have written them myself by just replacing some key words. For instance, "I no longer think of myself primarily as a widow. Instead, I think of myself as a person who has been widowed." Or, "Not once in that time of conversing and socializing did the topic of Frank come up. That is a very good thing. Not because I don't ever want to talk about him or have people ask how I am doing but because it means that I have been able to have a life outside of widowhood."

    I LOVED, LOVED, LOVED this piece! It totally touched me.

    Have I mentioned I LOVED this piece?

    1. I am so glad that you were able to relate to this piece. Even though I write a lot about illness, I find that many times people are able to relate what I am saying to a non-illness experience of their own and that is exactly what you have done.

      I am glad that you have found someone who has been so instrumental in helping you get through such a terrible ordeal. I respect and admire your strength! You have made Frank proud

  3. SO proud of YOU!! I know that the journey you are on does not come easy. It comes with a lot of very intentional work. It took me a long time to give up the idea that I might need "help" with this whole illness thing. In fact, when I was working on getting my disability I answered "those" questions like I was the epitome of strength and stability. The fact is - this stuff takes it's toll. Things build up. Life becomes saturated in all things "illness" and we feel like we are swimming for our life in a sea of sickness. I now, like you my very courageous friend, speak very openly about seeing TWO very wonderful therapists. Diane is my psychologist that works through palliative care and Shep is my neuro psychiatrist whom I see through the pain clinic at the U of MN. They have changed my life - plain and simple. Now, when things start to build up or I start seeing a not so wanted behavior in myself I make a mental note to bring it up at my next meeting. But I tell you what - I STILL try to hold back every now and again. For example, about four months ago (after taking chemo for three years now) I started doing this very weird thing. When I would go to take my medicine, I would throw up before I took it. I thought - this is ridiculous and I know what's happening. So I tried to stop it. Then I started getting sick about two days before my shot. Then I would get sick with the meds would come in the mail. Then I would get sick when I opened the closet to get them out.... I'm sick for about three days when I take the damn stuff - it infuriated me that I was "causing" myself to be sick on all of my good days. To be honest - I was embarrassed that it was happening. I let it get to the point where I was throwing up every day before I barely mentioned, practically whispered it under my breath at one of my visits. I found out that IF I would have told them sooner the whole stupid thing could have been prevented. But because I let this VERY REAL, VERY WELL DOCUMENTED psychosomatic issue go on and on and on, now I had to be taken off a drug that was actually doing me some good. Hum...... guess I still have some work to do! They say it's the journey not the destination. I think "they" say that because we never really DO arrive! ;-)
    You are right - we are people, who happen to be sick. Definitely not sick people. And isn't it fun to choose the later? I sure think so! Good for you, my friend. You are traveling so gracefully these days.

    1. "Traveling gracefully". Such an eloquent phrase and I consider that high praise coming from you. Thank you for being brave and sharing your experience with all of us. Much love.

  4. What a beautiful post, Christine! My first thought when I read your title was that it was going to be about fond memories of The Good Old Days when women hung sheets outside on clothes lines. What a surprise to find out it was about unhappy memories. It never occurred to me that clean sheets, especially warm ones, would mean something so different to others. I know in my heart that you ARE a warrior! I'm always amazed at your inner strength. And I'm so glad you're seeing a therapist. I've turned to a couple different ones during very low periods in my life, and they helped so much. Keep on, keepin' on!

    1. The interesting part is that clean sheets for me at home on my own bed mean something different than the hospital sheets. My own bed sheets smell of comfort to me. Same item, different context. Thank you for your encouragement!

  5. As I was reading this post I was going 'uh huh' and 'yep' lol, Thanks for sharing. It does take strength to ask for help. :) xoxo