So sorry for a long delay between posts. I ran into a bit of a technical issue with my blog that is now remedied. Since last writing, we have learned that Anna’s lung functions stabilized. She has about 1/2 her lung capacity. It has remained this way for about the last two months. Our hope is she stays at this level for the long haul. Anna has adjusted to the reduced lung capacity physically and doesn’t notice most of the time. We’ll know more about the progression of the chronic rejection this summer after Anna’s next Dr’s visit at Duke.
NEWS: I have a new website that will be up and running hopefully soon. I’m combining my Journey Forward website with my new, Journey Forward for Life domain. I am planning on offering videos and online workshops to supplement the Journey Forward Workbook. I also have an idea to create in-person retreats that will give a limited number of people the chance to go to a beautiful place where they can work on issues in a group format lead by me.
The first retreat will be on Self Care. You’ll have the opportunity to explore who you are, what you like and don’t like and how you can restore and recharge. We’ll dig into the whys behind the challenges you face in taking care of yourself or even knowing what you like. I’m excited about the changes to come. If you want to stay in the loop, please email me and I’ll get you on my email list. No constant filling of your inbox, just letting you know when I’m launching new offerings. Email me as well if you are interested in participating in my first retreat this summer: firstname.lastname@example.org
Here’s to humming along!
We have some answers about Anna. She has both acute and chronic rejection. Acute rejection is usually treatable. Anna has had this before. A few days of intense IV steroids have stopped it every time. Chronic rejection sometimes stops but the damage is irreversible. It causes scar tissue in the lungs. Lungs and scar-tissue don’t go very well together because scar tissue doesn’t expand like healthy lung tissue. As a result of the scarring, Anna’s lung functions have dropped to 62%.
Today, she started an IV treatment called rATG. It’s supposed to stop the acute rejection. I’m a bit confused about how or if this will help the chronic rejection. The rATG has some bad side-effects. Some people tolerate it just fine. Some end up with intense flu-like symptoms. Some have blood pressure issues and end up in the ICU. Some get PTLD. If you have followed Anna, you might recognize those four letters as the type of cancer she got. Side effects or complications are not one size fits all. Anna might be totally fine. At the moment she is in a Benadryl induced nap.
So here we are again staying in the here and now. I’m mad about the lost lung functions. I’m mad about the chronic rejection. I’m also sad about both. I stop there. I have to. I feel this heaviness in the center of my chest. It’s a ball of tears that just want to come pouring out. They will. I will let them, just not now. Right now Anna is staying upbeat and positive. She joked about how the last time she had Benadryl, she thought her hospital room was the portal to heaven and she called her brother and cousin to tell them they needed to get to her room or they would be left behind. So far, she’s not having that kind of fun!
I hear Dory sweetly reminding me, “Just keep swimming, just keep swimming…” So that’s what we will do. Breathe and make the best of now. It’s New Year’s Eve. We must celebrate!
On Thursday I was casually enjoying coffee with a friend. My plan for the day was to take care of a few errands and then head up to Buffalo, WY to enjoy my Birthday and New
Year’s with family there. I got a text from my step-daughter that my granddaughter was super sick and it might be good to put our trip off by a day or two. Plans change. Within an hour, I got another call. This one was from a nurse breaking the news that my daughter, Anna needed to get on a plane and head to Duke Hospital ASAP. Anna had gone to the Dr. for a regular checkup. While there, they discovered her lung function had decreased significantly. After a conversation with her team at Duke it was determined she needed to be treated there. By 5:30p we were on a flight to Raleigh/Durham. After we arrived, Anna was immediately admitted to the hospital. We don’t know exactly what’s going on. The likely culprit is rejection, but we won’t know for sure for a few days.
When I first heard about this I just listened. My next step was to call my husband and let him know. As I talked to him the gravity of it all started to sink in and I started crying. I cried for Anna because she, her dad, stepmom, brother and sister were supposed to leave on Sunday for their first-ever cruise. Anna was extremely excited about it and to hear she couldn’t go left her crying so hard she couldn’t tell me, that’s why the nurse called me. I also cried because I feared the worst: irreversible rejection. That’s where I started sinking. Fearing the unknown.
While sitting on the airplane I realized I was future-tripping. My eyes felt hot and tired and I started crying again. Then it hit me, I have no idea what’s going on with Anna’s lungs. This could all be an over-reaction. It could be minor rejection. It could be devastating rejection where the only solution is another transplant. These are all “could-be’s” none are a reality any human is aware of at this point. So I stopped myself. I said I will deal with reality when I know it. For now, stay with what I know is true and real.
That is what I am doing: staying in the here and now. It’s very freeing. Every time the sneaky future-buggers start yipping about how this might happen or that might happen, I quickly quiet them down with, “There aren’t any answers right now.” It simply requires awareness and intentional thought. Simple, not always easy, but always freeing!
If you want to be truly free, you must let go of any attachment you have to how others respond to you. What?! Yes! If you do things in order to receive accolades, approval or acceptance, you are setting yourself up for an unhealthy bondage. You will never please others all the time. Your opinions and theirs don’t always match up. Your execution might not be what someone out there was thinking it should be. If other’s approval is your goal, you are doomed.
I’m not saying just go about your life doing whatever the hell you want without regard for how you might be affecting people around you. That’s called selfishness and I am not talking about that. I am talking about the part inside of us that is crushed when we don’t get any likes on our Facebook post, the part that gets gloomy because no one noticed the trendy outfit we’re wearing or our manicured lawn.
Many of us are motivated to do something so others will notice and that is misplaced motivation. It’s extrinsic. Healthy motivation comes from within. Sure, it feels good when others give us a compliment but that cannot be our marker for our achievement.
Set goals for yourself because it will feel good to you to achieve them. Wear the outfit because you feel awesome in it. Care for your lawn because that’s how you like it. When you notice you are doing something for the stamp of approval from others, stop. Pause for a moment. Recognize what you are doing. Remind yourself you are putting your sense of accomplishment into the hands of others. That is a place it was never meant to be. Take it back.
I think the worst parts of depression consist of apathy and listlessness. They suck you into a downward spiral so powerful it seems like there is no way out. It wouldn’t matter if there was a way out because you have no energy to get out. It’s such a vicious cycle because you are simultaneously miserable and don’t want to feel that way one more second.
I have a tremendous amount of compassion for those who live under a cloud of depression day after day after day for months, even years. I only experienced weeks of intense depression and just a few hours of not-going-to-live-anymore depression. Those hours were the worst of my life. I called out to God in the deepest part of my depression. My depression didn’t go away in that moment, just the desire to act on my thoughts of ending my life. I was still in a heap of tears and misery but I began the hard work to get out of it. My depression was situational but my situation didn’t change over night.
Once I was out from under the worst part of my depression, I made a decision to do something different. To stop swirling. It took a few months before I was completely free of the spiral. I found the steps that helped me or maybe they found me. Here’s what I did:
- I listened only to Henry Cloud and John Townsend’s Solutions CD’s. Filled with information about how to take control of my mind and my life.
- I saw a mental health professional weekly.
- I shared my pain with trusted people.
- I got out of bed and walked every day (or close to it). Sometimes I walked a few times a day.
- I soaked up God’s love messages to me through the Bible. If you take that book’s overall message cover to cover, it is really about relentless, non-judgmental love and freedom.
- Every time I felt a wave of depression I would describe it to myself, usually aloud. Kind of like this, “I feel that familiar surge of black, life sucking poison trying to take me down like the black spider-man suit. It’s really sadness. I feel the hot tears pouring out of my eyes, they get cooler as they roll down my cheeks. I feel a heaviness in my chest. I’ll let this be here for now.” Then after a few minutes I would take a deep breath and think about good things in my life, “I have good in my life. I have a few friends who really care about me. I have a roof over my head, food to eat and gas in my car. The sky is a beautiful blue.” I would then go outside, look at the sky, feel the air on my face, take a few more deep, relaxing breaths and then ask myself what I needed to be doing. Tasks that needed my attention. Then I got busy. Some days I would go for a walk, even while crying and talking to myself like I just described a few sentences ago. I did this over and over again for weeks. The sadness began to lessen. I didn’t feel it as strongly or for as long in the ensuing grief sessions.
Unless your depression is clinical depression caused only by a physiological issue, there is usually at least one experience that needs to be grieved lurking underneath the depression. It’s like a wound. Sometimes wounds get infected so intensely you might need antibiotics or the infection will rapidly multiply and can even take your life. The infection is the depression (unprocessed grief). The wound is from a painful experience: death of a loved one, loss of a job, end of a relationship, a disaster, witnessing violence, and abuse are a few depression causing experiences.
The best gift you can give yourself is that of processing your grief. If you are experiencing depression, it would be worth it to work with a mental health professional to find out what might be going on beneath the depression. Sometimes we don’t think painful aspects of our past can be involved in our current depression. Just because something happened a long time ago and you thought you were “over it”, doesn’t mean it can’t be affecting you today. Grief has an interesting way of lurking quietly below the surface for years and then barging its way back into your life in a most insidious way.
If you’re looking for a mental health professional, try PsychologyToday.com or Theravive.com to find one near you. If you are experiencing thoughts of suicide and need someone to talk to, call the National Suicide Hotline 800-273-8255. They also have an online chat option. If you intend to take your life, call 911 or get to an emergency room immediately.
The further I walk down this journey of life, the more I realize life is just plain hard and people are messy. Somehow I thought life was easy, people were uncomplicated and almost everyone was nice. I remember the first time I realized people are complicated and mean, I was 23 and managing my dad’s hotel in Aspen, CO. A guest treated me horribly. It was because I was on the other side of the counter (like the other side of the tracks). The man talked to me as though I was sub-human. I was in disbelief and a tiny crack began to form in the protective layer of shellac I had poured all over the messiness of life so I wouldn’t be aware of it.
The shellac comes in the form of stories we create. We force everything that goes on around us into that story. At some point, though, the story begins to disintegrate and when it does, we melt into a puddle along with it. It’s healthy to melt. In that space, we are able to experience life as it really is instead of in some story we created. While the story might feel good, it doesn’t actually serve us well as adults. The story keeps us pouring lots and lots of shiny shellac over the pile of crap that exists in reality. It’s just polished poop.
When we take the shellac off, we can deal with the icky parts of ourselves and the world around us. We can be sad and hurt. We can grieve. We can be with others who embrace reality, too. And this is the place where healing happens: aware of our own issues, knowing others have issues and being vulnerable with each other. No more stories! No more polished poop!
Note: Sometimes when we let the shellac dissolve, it’s too much for us to bear and we feel as though we are falling apart, like the bottom has dropped out from beneath us and we’re in a free fall. If you are ever in a place like this, please seek out the help of a Mental Health Professional. You can also call the National Suicide Hotline just to talk with someone, whether you are suicidal or not: 800-273-8255