Sorry I haven't made any posts lately. I've been working a lot and pretty tired. I hope to get back in the swing in the next few days...I have lots of things I'm anxious to write about.
Today, I have been working on a talk I am giving tomorrow. One of my favorite things in the world is to talk to Med Students, Residents and Attendings about the Patient Perspective. This is my first time talking to Shrinks. I'm excited! Here's my talk and please forgive the fact that it's not polished. I ad lib so the talks aren't written to perfection.
It's my hope and plan to give many, many more of these talks in the future...
My name is Tiffany Christensen and I was born with Cystic Fibrosis. I have had two double lung transplants, one in 2000 and the second in 2004.
I am 33 years old and I have planned my own funeral…twice.
I have sat down with the people that I love and told them that I only have 6 months to live.
I have held my mother’s hand as she cried and said she didn’t know how she would live without me.
I have had more days in the hospital than I could possibly ever recall.
I have scars all over my arms from the countless IVs, scars on my torso from chest tubes and scars from the clamshell incisions that were made when I had my double lung transplant.
Before my first transplant, my lung function was 18% of capacity. Before my second transplant, my lung function was 10% of capacity.
Translated, that means I got severely out of breath brushing my teeth.
I have lived with chronic illness, acute illness, sudden onset illness and terminal illness.
I am honored to be here today to talk about my illness journey.
The first thing I’d like to talk about is what I call the “Illness Identity Crisis”. To illustrate this, I’d like to ask you to get the pen and note card at you seat and write down as many words as you can think of that describe you. “Self Labels” if you will. No one will see it so be as honest as you want to be. I’ll give you about 30 seconds….
OK. Now. The first thing I’d like you to do is cross off anything that pertains to your career. That’s usually one of the first things to go when you get sick.
Now cross off anything that has to do with how you look…that changed pretty dramatically.
Now activities, hobbies. Not many of those are sustainable during serious illness.
OK, you don’t need to tell me what you have one there, but how many people have more than 3 things left on the list?
The next one might surprise you. Personality traits. I was surprised to find out that the things I thought were my personality were not fixed or permanent…they changed very much the sicker I got.
Now, cross off relationships. Not because you will loose many, although it’s likely you’d loose some, but because they have to be restructured. If you’re a Mom and you’re sick, you will have to completely redefine your role and what Mom means. The same goes for friend, wife etc.
OK, again, how many people have 2 or more things left on the list? Interesting.
Finally, cross off anything to do with faith in God. I’m not saying you will loose your faith in God. (although some people certainly do) I am saying that you will definately be exploring new spiritual territory and, let’s just say, you and God will probably need to stop being so polite!
OK, now, final count…how many people have more than 1-2 things left? (Not many…no one…you do? I would love to talk to you afterwards etc)
So after doing this, can you see why crossing off all of these things from your life could make a person feel lost, like you don’t know who you are and you really never did? What you have discovered is that not much about how we see ourselves and our lives is permanent. Who am I if I’m not a Doctor, Nurse, funny person, reliable person, person with unwavering faith…the list goes on and on. It can be scary, sad and confusing.
It’s like the peeling of an onion. One by one, the layers of our life unravel and we have to give something up. It may start by quitting a job and then it may be giving up a hobby and eventually, it may be giving up our independence.
What is wonderful to know is that after all those layers are gone, you are left with only the core. The sicker I got, the more I could actually feel the separation between my body and my mind or spirit.
My core was never sick or tired or even scared. I found out that my core is an indescribable, un-namable part of my being with no adjectives or duties associated with it. This is one of the greatest opportunities of illness…to transform the Illness Identity Crisis into the deepest knowledge of oneself. Inner Peace.
So, how can you, as caregivers help someone suffering from the “Illness Identity Crisis” reach that place of peace?
When you loose so many of the things that once gave you purpose or made you feel valuable, sometimes all you need is for someone to recognize that you still have things to contribute to the world.
Support them in feeling valuable by engaging them in conversations about things they have interest or knowledge.
Express the impact you see them having on you and others now.
Encourage them to plan an event or some other project that would be physically possible that will engage their mind and creativity and will serve a purpose. As an example, I planned my mother’s 65th birthday and enlisted the able bodied to do the labor while I created the feel and schedule and games. It was fun for me and also gave me sense of great purpose because it allowed me to do something nice for a person I love.
Let’s move on to another challenge I found during my illness journey. That is the issue of empowerment. To be dependent on those around you and to not be able to do “normal” and mundane tasks can really affect one’s pride and make a person feel so vulnerable.
Those feelings of vulnerability can often manifest as feelings of anger, fear or sadness.
I know for me, being physically poked and prodded made me feel especially vulnerable. I often felt embarrassed and ashamed. It’s hard to articulate exactly why, but it has something to do with feeling like as an adult trapped in the body of a helpless child.
I wanted so much for the people caring for me to see that I was an individual with something to offer…not just this broken down rickety old body! This attitude made me depressed at times, angry with the people caring for me and feeling like I was just a big pin cushion for the world to use at their discretion. I felt out of control.
As a sick person, you can feel like you spend your life at the mercy of others…waiting for them to bring you food, medicine, oxygen. Being pushed in a wheelchair at a speed and route not determined by you. Being sick can feel like being out of control.
I found that, while physical vulnerability was a big part of my challenge in my illness career, so was emotional vulnerability. Sometimes, my frustrations came from not being able to express my internal thoughts and feelings. Not because I wasn’t able to articulate them, but because my body simply didn’t allow it!
Laughing, crying, talking and getting excited were things that I had to learn to stifle and control. I simply didn’t have the energy or the breath. Sometimes, I wanted to shout “Please remember, I’m still in here!”.
Again, it was a feeling of being trapped because my internal reality didn’t match my external reality. I still had the same need to express opinions, ideas and jokes, I just couldn’t always get it out or simply didn’t even expend the effort to try. With some people, I was able to develop alternative ways of communication, but I still felt left out of many conversations.
What can you do?
Help family members understand that the person they love is still in that body somewhere, they just can’t express themselves the way they used to.
Helping people find new ways of communication and different ways of occupying their minds can be helpful.
Journaling is good because it takes much less effort than speaking.
Art was something I used, and the possibilities with that are nearly endless.
I found great satisfaction in listening to lectures, as it enabled me to occupy my mind with new ideas. I was able to engage myself on a deeper internal level than would naturally appear in my mundane world.
Mostly, the nicest thing you can do is remember that the outer wrapper doesn’t always, and probably rarely does, reflect the internal life within us.
I think the best way to empower patients, is to honor them where they are. I found that I often felt burdened by “Well World Expectations”. I was dying and it wasn’t a secret, but not many people wanted to talk about it. I found myself protecting my friends and family from my reality.
One thing that I found very empowering was planning my own funeral. Helping someone hash out the details for their farewell party can be such a gift.
Also, I no longer was able to be the problem solver and free counselor that I once was. I think it is very difficult for people to let these roles change or end. Helping a patient establish new boundaries within old relationships can be of tremendous relief.
You may have noticed, I have used the word “trapped” today several times. I often did feel like I was trapped inside this body. Many people pray for and some experience miracles of unexplainable recovery from illness.
What I learned is that there is another kind of miracle that is not nearly so dramatic. That is the miracle of learning to love life despite serious disability or terminal illness.
I may have been trapped in a body that wasn’t going to be cured by a miracle, but it was up to me to decide if I wanted to stay trapped in my self made prison or to escape the bars through self love and by learning the lessons this broken down old body had to teach me.
In time, I learned that the illness wasn’t my choice but whether or not to suffer was.
Today, I am still winding the layers of my onion back around the core. I have a job at a vet hospital, I volunteer for human hospice and am working to give more and more of these talks. I have my new husband and two very demanding 4-legged children to attend to. I am back in the world with full force, determined to make a difference.
However, I often find that the more layers I put back on my onion, the farther I find myself from that core. It’s my challenge now to only focus on important layers, like this talk, that enables me to honor and remember what I know.
I am so happy I got to be here to talk with you all today. Thank you for letting me be here.