When we don’t know what’s up ahead
This is not an unusual topic for me to write about. It tends to come up when I’m confronted with a new development in my daughter’s journey. Living in the moment is a way to live all the time but seems to be challenged when her health takes a dive as it did a few weeks ago. After learning her lung functions dropped significantly, she eventually heard the plan. Five days of rATG in Duke Hospital (done), then four weeks of a once-a-week infusion of Rituxan (a chemo drug that wipes out b-cells, the part of her immune system that is attacking her lungs). After that she will receive another bronchoscopy to determine if the rejection has been stalled. If not, she will do Photopheresis (kind of like dialysis) three days a week for a few months.
This week she and I travelled to Duke for her first infusion of Rituxan. Our hope is for her infusions to be moved to Colorado to avoid the cost of traveling back and forth every week. If it wasn’t around the holidays we might consider just staying there for the month. For Anna, this means a medical leave from her job and moving back to Colorado for now. She really enjoys her job and loves living independently in Phoenix so this is a tough transition for her. She’s not sure when she will be able to return to work. We don’t even know yet if her second Rituxan treatment next week will be at Duke or in Colorado. It’s a lot of “what do I do?” for Anna (and a bit of that for me as I figure out if I’ll be in NC next week or CO).
Ever been there? You know that place where some decisions need to be made but you don’t have all the information you need yet? For instance, Anna needed to give the rental office of her apartment 60 days notice to get out of her lease. She was planning on staying where she is and a new roommate was going to join her (her current roommate just moved out). Because of the unpredictable state she is in she had to tell the new roommate she couldn’t commit to a lease, so the new roommate is not going to be joining Anna. This is totally understandable. That decision had to be made but it was a tough one because if all goes well, Anna may only need the four weeks of Rituxan and then be stable for awhile, maybe even a year which would mean she could stay in Phoenix with the new roommate in the same apartment. So simple, yet too many unknowns to commit to that.
Her decision has been to end her lease, so she has until February 13. The good news is this gives her some time so she doesn’t have to move completely to Colorado, just for a few weeks while she deals with the Rituxan treatments. She doesn’t have the stamina to totally care for herself and work, so being in CO where she has four parents and two siblings to help her out is incredibly relieving. She is dealing with decisions a step at a time. Her decisions have to made on the knowledge she has in the moment, like giving up her lease and her roommate.
This can be a frustrating situation for all of us, right? When you have to make a decision but you don’t have all the information the future holds in the present. That’s just how it is. Part of our journey as humans on this earth is learning to accept those limitations and make the best decision we can in the moment with the knowledge we have at the time. When the future becomes the present and we beat ourselves up with, “If I had known what would happen, I would have made a different decision” we are being cruel to ourselves. The point is, we can’t know the future. Have compassion on yourself and do what you can with the knowledge you have in the moment. 🙂
December 2, 2018: I mentioned last winter that my daughter, Anna has chronic rejection of her transplanted lungs. It’s a form of rejection that cannot be “cured” it can only be stalled. The stalling effect actually worked and kept her lung capacity at around 50% for several months. In October she was at about 48%. Unfortunately, a week before Thanksgiving, Anna saw a dramatic drop in her lung function on her home monitor which resulted in her needing to go to Duke University Hospital last week. She had dropped to around 40% lung capacity. Her transplant team determined the best option was for her to undergo another round of rATG. That’s the infused treatment she received last December when she was diagnosed with chronic rejection. She’ll be in the hospital for a few more days to receive the full five days of treatment. Hopefully this will stall the rejection again, like it did last year. For now she’s in good spirits and her dad is with her helping her pass the time. 🙂
What to do about those unwanted thoughts or emotions? It’s crucial that you first understand what you are feeling or thinking. After naming it, find connections to help you understand why you are thinking or feeling what you are. Here’s an example: if you are feeling fear, what is the fear reacting to? Perhaps you just heard about impending layoffs at work and you’re not sure if you’re going to lose your job? It makes sense to feel fear when you don’t know what’s going to happen.
Now that you know what it is and why it’s there, you can work to change it. How will you benefit by continuing to feel the fear? Perhaps it will help you do your job well. Maybe it will help you update or start your resume, to begin thinking about the possibility of a job change for yourself. Think of channeling that fear energy into doing the things you can to prepare yourself, just in case.
Next, focus on the thoughts that led to fear. It’s likely something along the lines of, “and I’m going to lose my job.” What do you know is true and real beyond a shadow of doubt? Perhaps you received a memo from HR that announced upcoming layoffs. All you know is you received that memo. That’s it. You know nothing more so don’t add to the story: “Oh my gosh! I’m going to be laid off, I’m not going to be able to find another job and I’ll be living under a bridge.” You don’t know that won’t ever happen, but you also don’t know it will. You don’t have any data to support this. Have people lost jobs and ended up homeless? Yes. Do you know beyond a shadow of a doubt it will happen to you? No.
When you put your thoughts through this test, it helps to minimize the emotion that is connected to the thought. Now you can free up some mental and physical space to work on your resume, just in case. It’s ok to prepare for the worst while acknowledging you don’t really know what will happen.
You will likely need to go through the process again and again of asking what is true and real about your thoughts on this very same issue. I like to say, “rinse and repeat” because our thoughts have a way of going back to square one. Just recognize what you are thinking and feeling, and repeat the process.
Do you ever wonder if you’re the only person who thinks and feels as you do? We often feel isolated in our experience, usually because we don’t want others to know what we’re really thinking and feeling. We are often too embarrassed by our experience to reveal it to others. And yet, here we all are doing the same thing and feeling alone. We feel odd so we don’t share with others who are also feeling odd. If we all shared honestly we wouldn’t feel so odd anymore.
Here’s a tip, every human who is capable of thinking has all kinds of thoughts and feelings, some that are acceptable and some that are not. We all have thoughts and feelings associated with anger, jealousy, fear, lust, sadness, inadequacy and joy. This is not an exhaustive list, just the first ones that come to mind. Lately, my thoughts and emotions have been connected to joy, anger, jealousy and inadequacy. I’ve experienced the others on the list as well, just not right now.
I think it’s our human nature that guides us not to share, we are hiders. If I tell you the truth about my experience you might judge me and I’d rather not experience the judgement so I’m going to hide my real thoughts and emotions to protect myself. But, as I stated in the very first paragraph, we’re all doing this and we know it. Or at least some of us are aware that everyone is doing it. Anyone who tells you they don’t ever feel anger, jealousy, fear, lust, sadness or inadequacy is lying either to you, to themselves, or both.
Some people work very hard to detach from the reality of their human experience, “I never think bad thoughts” they might say. It’s not true. They do, they just want you to see them as only good because the bad or seemingly unacceptable parts stir up unbearable shame; however, as I stated in my We Are Not All Bad blog, we have a mix of good and bad (helpful and hurtful, or acceptable and unacceptable) within us. I believe a large portion of our journey in life is to come to terms with the truth of who we are and what we are capable of both positive and negative.
Coming to terms with our complexity allows us to embrace and honor our reality. When we embrace and honor, we can work to process and understand our experience and be in charge rather than having unwanted thoughts and emotions in charge of us. How do we do this? Find out in the next blog.
A little awareness goes a long way. Taking just a few moments to notice yourself right now might be the difference between continuing to live in autopilot or being present in your very own life. Awareness is the practice of noticing yourself in the moment – your thoughts, emotions and physical sensations. When you are aware, you make decisions or act from intention. You have an increased chance of responding wisely. Most importantly, you are more likely to create change instead of doing the same unproductive behavior again and again. Try it. You might like it. 🙂
I believe God and I read the Bible. There’s a lot of good information in there. There are some things I do not understand at all and there are some that are so challenging I wonder if I could ever do them. One particularly challenging action is loving my enemies. Related to my “I’m Back” post, I have been working on going beyond forgiving people to actually letting go of the bitterness I feel toward them. This has been incredibly hard. It’s easy to want good for my children, my grandchildren, my husband, people who are nice to me, people I don’t even know…But to truly love and want good for someone I have been hurt by or am angry with, well now, that is perplexing! When I am dealing with enemies, I want nothing to do with them. In my darkest moments I sometimes hope they drop dead (on their own, not by my hand; and yes, I really do think that way sometimes…not proud!).
Lately, I have been turning a corner toward loving and wanting good in the lives of people I haven’t wanted to love. This has been an elusive experience for me most of my life. It feels good to love and not harbor hate. I believe staying away from ruminating on the bad parts of these relationships has helped. All that tail swishing I learned from the horses through equine therapy is really paying off! I am not pretending nothing hurtful happened, I’m just not letting it rob me of joy or snatch my love for people.
I’m experiencing this breakthrough today. I take steps forward and steps back so I’m not saying I’ll never harbor icky thoughts or feelings towards others. What I can hold onto is knowing I’m capable of this previously unconquered thought shift. I will find my way back to it again because I know the way and it feels so much better than hate! 🙂