Lost in Transition

When I was a Child Life Intern over the summer of 1999 in preparation for what I hoped would give me experience for the field I was pursuing as a career, Art Therapy with terminally ill children, I learned something interesting about "older" patients with CF (Cystic Fibrosis). Not too many years ago, it was expected that CF patients would not live beyond their teens or early 20's. For this reason, after high school they typically didn't make any long term plans for life. Few went to college and most focused on just getting part-time jobs and not really planning long term.

However, as technology advanced and and new treatments were developed, CF patients started to live longer lives and found themselves living well into their late 20's, 30's, and in some cases, even 40's and 50's. This put them in a transition period which often led to depression. They began to feel like they should be doing more with their lives. They had dreams, but weren't sure if they were worth pursuing as they continued to age and deteriorate. If they had known in advance they would have lived that long, they would have begun a career and gone to college. But they were still in limbo. They were basically waiting to die as it could come at any time, but they also may not...they may still have years left.

While none of us knows when we are going to die and should always live each day as if it is our last, we also shouldn't live in fear and not work towards the future because we DON'T know. Unfortunately, with people facing chronic, serious illnesses in which major complications could come at any time, life and decision making is very complicated. Plus, if you already have so many complications interfering, overcoming obstacles just to reach dreams and goals will take longer than an average person. It can be discouraging. Making the decisions to step out and pursue big dreams is even more complicated. Is it reasonable? Will I invest a lot into it, only to have to stop because of all the challenges? My body rules me- there is no way around it. While I have limited control in how I feel by forcing myself to think positively, get out and do good things, focus on others, and not let my challenges rule everything, the fact is, my body tells me what to do every day and I don't know from one day to the next what it will tell me.

Right now I am in what I consider to be a period of transition. In some ways this is good, in some ways it is bad. I think it's more good than bad as I am thinking in more healthy terms, but I am doing it during a time where my body is not physically strong enough to really pursue my dreams. The obstacles are huge. I don't know that it's even reasonable to consider the things I am thinking about, but I'm not one to let impossible or difficult get in my way. Perhaps the fact that I am dealing with so much has made my dreams and desire to fulfill them become even stronger?

Right now I don't know what my future holds. As I see my body deteriorating, I also see my visions and dreams changing in even bigger ways. There are things I want to do with my life that seem virtually impossible at this stage, yet seem to be overwhelming my mind. These are things that I have been considering for months, perhaps even a year, yet I have put in the back of my mind because I have considered them to be unreasonable and have felt that the time is not yet right to pursue them. However, as recent events in my life have unfolded and I have learned and experienced new things, dealt with recent challenges, and know I see a future of so many more complications, I feel like it is time to step out of the comfort zone I am in and make some big changes in my life.

I'm scared. Why? What I do right now is safe. I'm used to it. It lets me set my own pace, my own life, and gives me a chance to live my life around my health- something I need the flexibility of doing, yet it doesn't really challenge me in the ways I want to be challenged. I don't let this flexibility make me lazy. I have built things into my life to force myself to do some things that I often have to stretch myself so hard to do so that I don't get lazy. I don't want to spend my time at home within my limitations and let myself fall into a trap of thinking I am too sick to leave home and do some more active things. Sometimes do have a deadline I need to reach or require goal setting in order to achieve them. I need more stability. I need some changes in my life. My schedule has become monotonous. My life is starting to become boring and lonely. While it is fulfilling, satisfying, and I know God-led, I am beginning to feel like He is leading me in a different direction.

I feel like right now I am lost in transition. I want to make changes, but I realize that the changes I want to make are so big and so complicated. Things are getting harder for me all the time. Walking is a challenge. I have difficulty concentrating and learning. I keep developing new problems. I have some days when I actually feel worse than I did pre-transplant now, but I also have days when I feel really good. My health is still so unpredictable. Sometimes I honestly feel like things are improving, and then I get nailed with something else. Even one hour to the next is unpredictable. I can get up, go out, and then not feel safe driving home because I have a sudden attack and crash. I tend to fall and stumble a lot. I can only work on some projects requiring much concentration for short periods of time. My energy is so limited. Some days I am loaded with energy, while others I can barely lift my head off my pillow. My sleep patterns are messed up and based on meds, health crashes, nights of severe pain and nausea, and other medical factors out of my control. I have no control. My body truly defines just about everything I do. I have to overpower it sometimes and ignore as much as I can in order to go out and enjoy some normal things, but more often than not my activities in life are defined by my body.

I'm not even sure where these desires are coming from. Are they a calling from God? Are they emotional and impacted by recent challenges and changes in my life? Are they really things I should genuinely pursue or just lost dreams I can't give up? Are they related to my medications, or chemical and nutritional imbalances as I adjust to new tube feeding formula? Should I just dive in, or should I really lay it out and wait to see how my body responds medically to recent and upcoming changes? How do I overcome the obstacles I forsee? Some of the things I am considering will require giving up or limiting other huge parts of my life and other activities I am involved in. These are things I love doing, feel like I am called to do, but will have to be scaled back or stopped if I pursue my other passions or activities. These are not easy decisions. I am trying to figure out how to bring more normalcy into my life, gain more independence, while recognizing that my body is actually forcing me to become more dependent on others and even less normal as my conditions progress and I develop more complications.

I know I am a fighter. Impossible is not a word in my vocabulary. If there is something I feel strongly about, I will find a way to do it. It may seem cliche, but I do honestly believe that if I am supposed to do something, nothing will get in God's way of me doing it. But, we also have to take our own steps of faith and follow the lead. If it is guidance or a whisper from God that He has other plans for me, I know He will provide. I need to think a lot through and take that step of faith if I believe it is the right one. But it has major consequences. My decision could impact the lives of thousands if not handled correctly. It will change my life. I could potentially give up some things that have been such a big part of my life. I'm scared. I cry a lot because I am so confused and I am not sure what the source of these thoughts and emotions are. I want to do so much, but I don't want to have to give anything up in the process. I want to try new things, learn new things, and see if I can achieve so many other dreams.

I don't know what my future holds. I don't know if I have one year left, five years left, or 20 years left. All I know is that I feel like there is more to my life...more I am supposed to be doing. Different things than what I have been doing. Something that requires a significant commitment to something else and a really big change in life direction. It's difficult for me because my physical limitations will always hold me back to an extent. I have been able to handle what I have done for years and I feel safe there. But I also feel bored and frustrated. Is it time to consider some new ventures? Are these new ventures even reasonable or possible?

It's so easy for me to get frustrated and lonely because I don't live the typical life. Days can be long and social planning challenging. Because everyone else works all day, I spend days at home, staring at my computer, and often go all day with no one to talk to or interact with in person. My body operates on a different schedule than most and is so unpredictable that planning social activities can also be challenging when everyone else has such a limited, less flexible schedule for social planning.

I just want to be normal...I long to work all day, come home, cook dinner, and then spend the evening like everyone else...whether it be paying bills, doing laundry, taking care of kids or collapsing on the couch after a long, full day of work...too tired to even check my Facebook messages. I'm 33, dependent, still at home, not working, and just lost...lost between being too unhealthy to live normally and independently, yet being too well to spend my days isolated and trapped in my home waiting for the next medical crisis. It is unpredictable. It may come tomorrow, or it may not come for six months.