Becoming My Illness

Fall Mums in our yard. (Sorry the scenery around here isn't so hot right now!). Everyone on the East Coast is getting snow, except it seems, for the little pocked where we live! Boo!

I've fought desperately to maintain being a person with a disability. Not the disability. During the year of the Rocephin, I felt that I became my illness. Getting through treatment became so all-consuming and feeling sick 24/7 left little room for anything other than an illness-focused world.

Before the year of the Rocephin, I still felt that I had some balance. I was sick, but I wasn't my illness. Now, after the year of the Rocephin, I'm picking up the pieces and trying to create a new and different life. I'm re-evaluating everything. Who am I other than illness? What gives me meaning?

My life became illness and 'everyone else's lives'. It was easier to say: how are YOU? What's new with YOU? than to say how crappy things really were in my world. At dinner, I found myself having nothing to say except how crappy I felt or what was going on in other people's lives. I learned what was important to every one else, but I forgot to keep or find what was important to me. In a way, I made myself invisible, by quietly sitting in pain. But who wants to rain on other people's joy? Not me. I used other people's lives (Facebook can allow one to do this for hours!) as an escape from my own pain. And really, how many ways are there to say: I feel like crap? There didn't seem to be much value in repeating it.


I fear making this statement at all because YOU are the people who keep me going and sustain me. Being a good friend and family member, being loving, being kind, being compassionate, being empathetic, being generous are THE most important and meaningful things to me in this world. 

I have always been a relationship-oriented person. I thrive on interactions with others and I put those interactions before almost anything else, whenever possible. Throughout my illness my major focus has been on healing and relationships with others. 


The problem now is that while I was on the Rocephin, I started living vicariously through everyone else's lives, and forgot to cultivate my own life. Perhaps I didn't forget to cultivate my own life. I just didn't have energy to do so. Illness has allowed me to be a great observer of life (which can be a great privilege and learning experience), but I would like to balance that out with feeling like more of a participant in life, however possible given my limitations. 


Since getting sick, I have feared that if I cultivated my own interests I would be seen as selfish or, worse, would lose my relationships because I didn't have the same amount of energy for them. This comes from the fact that I already spend SO much time depending on others and taking care of my physical needs.

The challenge for me now is to maintain healthy relationships, to continue to do a reasonable and tolerable treatment plan for healing, and to create my own meaning in life. 

My new treatment is also highly demanding, but thankfully, it does not make me as sick as the Rocephin did. Still, every day is dictated by needing to take medications every three and a half hours for blood pressure along with a long list of other medications and supplements at different times throughout the day, needing to make sure I have the right amount of time to wind down before bed, needing to eat on a regular schedule, drinking the same amount of fluids every day, eating a gluten-free, dairy-free and healthy diet, needing to shower only in the evenings, needing to put on compression hose and a girdle every day, needing to rest in the afternoon, etc. My days are also dictated a lot by how I feel from minute to minute--and I never quite know how that is going to be! Spontaneity and chronic illness do not co-exist. My life is regimented and operates within a lot of constraints. If I'm going to make this new treatment plan the best chance of success, I want to be fully engaged in it.

So, how do I find ways within the constraints of chronic illness and feeling like poo all of the time, to create meaning in life? To engage in activities that fill me up in ways that help to balance out the demands of the illness itself which are what leave me with that overwhelmed and exhausted feeling? How do I still find time to maintain and nurture relationships? How do I continue to do all of the things I need to do daily to create the best environment for healing?

On some level, some of these questions are simply part of the human experience in today's busy world, especially for women who are so relationship-focused. With chronic illness, these challenges are simplify magnified. Like times 100 or so? :P 

Recently while listening to Fresh Air with Mom, the sociologist being interviewed was discussing The Feminine Mystique. She mentioned that women had always been expected to be fully satisfied by their relationships--marriage, children, and friends. But part of being human is to want and seek out meaning in other ways beyond relationships. What Betty Friedan did in The Feminine Mystique was to let women know that it was normal for them to feel restless and not completely satisfied by relationships. The timing of this comment in the context of my current situation certainly gave me pause.

I have always had lot of interests and passions. I have always had a tremendous amount of passion for life. I'm just having a very difficult time coming out of the darkness of the year of the Rocephin. It's difficult to find myself actually feeling worse than I did before I started that treatment protocol. My biggest challenge is not a lack of interest in things or a sense of apathy, it's finding things that I can do within the constraints of my symptoms, brain fog, fatigue, and limited hours in the day. It is also difficult choose between all of my many passions! 

So I am working to find a craft or a cause or a charity that gives me meaning, fuels my passions for this world, and is doable within the constraints of my illness. Right now I find the greatest solace and satisfaction in blogging, so I have been pouring a lot into it. But my ability and energy to do it is very limited and it becomes a bit of an 'all or nothing' project for the day. It requires a 'good day' and drains me a lot, both physically and emotionally, when I am able to do it. What I love about blogging is the combination of creativity, spirituality, writing, photography, and communing with others. I love the tangible product I create. I'm able to communicate with others while also nurturing myself. 


For the many days that blogging isn't possible, I would very much like to find a craft or creative activity that I can do that isn't quite as taxing (and uses a different part of my brain!), as I miss the creative aspects of the activities I used to engage in. I'm thinking, um, coloring might be about my speed? This is not exactly 'meaningful', but a good antidote to the stress in my life. And, it can be done for just a few minutes at a time, while reclining.

My dream job consists of Hillary Clinton starting a foundation for women and girls around the world and me working for her. So, I just have to find a way to do serve the women and girls of the world on a bit smaller scale. In time. Right now, I need to take one step at a time or I'm going to be really overwhelmed!

I have been working on some other things too, but those will have to be part of another blog post. :)

I'm saddened to find myself in this place post-Rocephin, but all I know how to do is keep trying and to keep going. In some ways I've been given an opportunity to really evaluate what matters most to me and use my precious energy for those things. Every activity I engage in is chosen carefully and often with great pains, as it always means giving up something else equally meaningful and important. I'm constantly grieving the inability to engage fully in the world. 

I'm surprised to find myself so lost, confused, and uncertain. The Rocephin treatment left me in a most unexpected place emotionally and physically. I think I'm a bit shell-shocked by the failure of the treatment and by Mom's heart attack. I've always been so clear and directed!


In the midst of desolation and darkness, I am opening myself up for change and transformation. I pray that I find a way to live my life well with illness by creating meaning, engaging my passions, promoting healing, and nurturing relationships. It seems an overwhelming task at the moment (yes, overwhelmed is my "Word of the Day" pretty much every day...). 

It will take time, but I will find my dancing light again...


Thank you to all of you who continue to care, read, love, and shine your bright light in my life!

Blessings,

Emily

Note: I have been editing and re-editing this post for two days now. I'm terrified to publish it. I also think that as I was writing it, I may have started to find my answer. Next post: I promise it will be a 'happy one!' I'm 'letting go' and hitting the Publish Post button. Yikes!