Being comfortable with change

Change is hard. I think for several reasons, many of us avoid it. I do recognize that when things get uncomfortable it’s a sign of a change coming on. I believe that if we never got uncomfortable, we would never strive to be better or reach for more. Some of us need to have different levels of discomfort in order to prompt change. For those of us who are stubborn, sometimes it has to get downright ugly.

I also believe there is a part of us that is afraid of the possibilities, afraid of the uncertainty and work it would require to be our personal best. For me, it was always easier to just do what I had always known rather than be honest about my true capabilities and purpose in this world. And it was incredibly hard for me to leave situations that were no longer encouraging me to be my best. But finally, one day, it got to a point where living in the shadow of disappointment due to mediocrity and complacency was far more painful than the challenges I would face when I decided to live my truth. One day, I got so uncomfortable I took that leap of faith.

Today I have one year of continuous sobriety. I can honestly say as far as personal change, this has been the hardest thing I’ve ever done. It’s not the abstinence that’s been hard…………It was all the truth that came with it.

But that’s the thing….once you see the truth, you can’t ever get away with anything less again.

The Story of the dragonfly

Once upon a time, in the muddy little pond under some lily pads, lived a community of water beetles. The water beetles lived a simple and comfortable life in the pond with few disturbances and interruptions. Once in a while, sadness would come to the community when one of their fellow beetles would climb the stem of a lily pad and would never be seen again. They figured when this happened their friend must die since they were gone forever.

One day, one little water beetle felt an irresistible urge to climb up that stem. However, he was determined that he would not leave forever. He promised he would come back and tell his friends what he had found at the top. When he reached the top and climbed out of the water onto the surface of the lily pad, he was so tired. The sun felt so amazingly warm, that he decided he must take a nap. Unbeknownst to him, as he slept, his body changed completely.

When he woke up, he had turned into a beautiful blue tailed dragonfly with broad wings and a slender body designed for flying. So, fly he did! And, as he soared he saw the beauty of a whole new world and a far superior way of life to what he had never known existed. Suddenly, he remembered his beetle friends and how they were thinking by now he was dead. He wanted to go back to tell them, and explain to them that he was now more alive than he had ever been before. His life had been fulfilled rather than ended. But, his new body would not go down into the water. He could not get back to tell his friends the good news.

Then he understood…. their time would come, when they, too, would know what he now knew. So, he raised his wings and flew off into his joyous new life!

Bloom where you're planted

Cultivate. This is new for me. I never used to be able to do this. After a year of waking up, I have come to the realization that I could have never bloomed where I was planted because I never wanted to weed. Instant gratification, relief and hasty gain…… that was more my style. I would always pick up and go (in one way or another) when things got uncomfortable. But there was a flaw in the “fresh start” approach…. I kept taking me with me, wherever I went.

I used to pick a goal of something I thought I needed or wanted and then worked backwards to set up the steps to get there. This approach seemed very effective most of the time….assuming the ideas of what I needed were right. Looking back….maybe not so much. I did always get what I wanted, but unfortunately what I wanted wasn’t necessarily what was best. Now I try to subscribe more to the process. Instead of looking at the end goal, I just focus on the very next right thing in front of me and try to have no attachment to the outcome or fear of where life will lead me. At first this was very difficult to practice but now it’s getting easier and it’s opened up a whole new appreciation of where I am versus where I need to go. I was so stuck in my preconceived ideas; I missed so many interesting things along the way.

Today from where I stand, I see only the beauty of what I have, not what’s missing. And the world looks completely different. When my perspective broadened and opened up, the possibilities of expanding where I am at seem endless. It’s amazing that the same exact garden where I used to only see limitations and weeds, now has rich soil that’s ready to go.

Getting here has been an interesting process. I spent years searching everywhere for anything that would bring peacefulness and comfort. I searched to no avail. My manic seeking produced nothing but more emptiness time and time again. Little did I know, all I had to do was sit through the uncomfortable feelings and keep doing the next right thing rather than run from it all looking for difference. It was about taking it head on and bravely walking through it.

Last week, while I was participating in the Pat Tillman run, I was thinking about the idea of riding out the suffering rather than escaping or looking for relief. When you run races, whether they are 26.2 miles or a 5k most everyone hits some sort of “wall” and I find it to be a very appropriate metaphor for the walls we hit when we are traveling through some sort of emotional pain. I couldn’t help drawing the similarities between those walls and how they related to letting go of the attachment to outcome.

When you hit the dreaded “wall”, things get incredibly uncomfortable and you are suddenly filled with self doubt, anxiety and fear. Your preconceived ideas of how things should be kick in and you are suddenly in pain. I truly believe at this point there is no choice but to let go of your expectations, come back to the now and run right through it. You have to just get comfortable with being uncomfortable and have faith that it will pass.

If you stop or go a different direction at that point, you will have to start over or you will never make it at all. And that same wall will be there next time, and the next and the next. You can try a bunch of different approaches or different days but until you just get through it, it will always be there ready to stop you again at the same place. I am beginning to understand that every time I am able to stay put and detach, I am so much stronger and my perspective grows more expansive and flexible for the next challenging time when I experience suffering.

I finally understand “bloom where you’re planted”. I understand that going away literally or figuratively only means I have to start over and I am never able to get through that place that’s stopping me. I don’t want that anymore. I understand there is nowhere else to go. It’s here. This is my life.

I will not live a thousand years. I can’t repeat my life. It's best if I don’t compare my life to another. When I look around at where I’m at right now, I find that peace I so desperately searched for all those years. And now when I’m uncomfortable, I understand it’s simply just another growing pain. And that’s just not enough reason anymore to uproot and start over. Not if I ever want to get to the other side of that wall. Not if I want to ever bloom.

"Autobiography in Five Chapters" from the Tibetan book of Living and Dying.

1) I walk down the street. There is a deep hole in the sidewalk. I fall in. I am lost....I am hopeless. It isn't my fault. It takes forever to find a way out.

2) I walk down the same street. There is a deep hole in the sidewalk. I pretend I don't see it. I fall in again. I can't believe I'm in the same place. But it isn't my fault. It still takes a long time to get out.

3) I walk down the same street. There is a deep hole in the sidewalk. I see it is there. I still fall in....it's a habit. My eyes are open. I know where I am. It is my fault. I get out immediately.

4) I walk down the same street. There is a deep hole in the sidewalk. I walk around it.

5) I walk down another street.




This passage really spoke to me this morning. I feel it describes the personal journey I have been on for the last year. Difficult things keep happening for sure, but I see them so differently now that it brings about a better experience. It takes practice, but I'm so grateful for the ability to be flexible in my thoughts. For so many years, I lived in either chaos or rigidity. It was no way to live. This passage was a great reminder for me today..... so I thought I would share!

2010, One day at a Time

When I look back in 2009 or forward to 2010, I am most grateful for today. The changing of the guard of time reminds me that when I feel angry or sad, I know I am living in the past. And when I get anxious, I recognize I am living in a future that is not real yet. And since I can’t change the past and I have no idea what the future holds, I finally come clear in my understanding that right now is all there is. With that realization, any resentment from the past and the fears for the future suddenly dissipates. I am left with this moment and as I look around I realize I’m OK for right now.

I did not always have this ability…..not by a long stretch. I did not live in the now and I was definitely not ok. I was chasing what I believed to be the truth. And in regards to our struggle with DMD, the truth is……Anthony has been OK all along. He knew something I didn’t. I often smile at the irony of him watching me run around in a manic state while he just happily sat and played. It was me who needed to search for answers. It was me who needed the hope. And it is me who was losing the truth in the process. He was in the now.

For years after the diagnosis, I worked so hard. I was in such excruciating pain that I felt the only relief could come from action. Hope got me up and fear kept me moving. They were both such useful emotions which really worked for me. And because of that work, I was able to get Anthony a tremendous amount of resources and help. Hopefully in doing so, it did help make his life a little bit easier.

The problem came as I continued to move through the goals I had set. With each hurdle I passed, I expected relief. But the relief was only brief. It became a never ending quest to feel useful in a situation everyone else described as a powerless place to be. But I couldn’t accept powerless. I saw that as a choice that I would never make as a mother or as a person. I wasn’t helpless, I had the power to do a lot and so I did. I clutched to the hope that as each problem got solved along the way, not only would it make his future brighter, but perhaps I might personally find some relief from the pain of uselessness.

If only we could help him to talk, then the meltdowns would stop. If we could find someone to teach him the right way, he could learn. If only we found the right doctors and specialists, they would have the answers. If only we raised more money, we would have more access to those answers. If we met more people and went more places, we would find some undiscovered answer to it all that someone else had missed. If only we could keep him walking long enough….. we could buy time to find the cure.

Then what? Then we could forget the pain from the past and all be happy in the days to come. So we did it. We got him talking. We got him learning. We found him the best doctors and resources and therapies. And we got him on PTC124.

PTC124 was the end all be all of my personal DMD goals. In my mind, it was the miracle that would solve everything. There is no doubt it solved a lot. Finally getting the drug did bring miracles to our life, just not necessarily the ones I had been expecting.

PTC124 brought hope for our son’s future and an answer that works for today. The drug has given Anthony a fighting chance. He is now given the same chance as other children whose futures aren’t predetermined by the predicted course of Duchenne. He is now on an equal playing field because his decline is no longer a guarantee. His future is now unknown………….. just like everyone else’s.

The journey of the drug brought me my personal miracle too. It brought me the understanding that I had to find a way to live in the now or I was going to be in big trouble. Working so hard to get to place of unknown was a crushing blow to me. To finally arrive at what I believed to be an end only to find a new beginning of more uncertainty, shook me to my very core. This wasn’t the answer I had searched for. I was looking for solutions, not more questions.

But it has been in this time I have found some answers, very different answers than the ones I could imagine. It has been a time of great awakening. I awoke to miracle of the now. I have taken the proverbial advice of “all we have is now” into my heart and into our lives. I can finally share the secret Anthony held the key to all the while as he watched from the sidelines.

In this New Year, I will do my best to recognize that the past is gone and the future is uncertain for us all. The only thing real is today and I will not waste any more of it. Make no mistake, I will I still take action. I will still continue to strive to be useful and make a difference wherever I can. And I will continue to do the next right thing, which will hopefully make for a better tomorrow. However, it is with a new understanding, I will lay that groundwork for the future without the cost of the present. And hopefully, I can continue to share what I learned from my son and this crazy journey…. that there is no relief in exchanging today for tomorrow.