Wednesday, June 19, 2013

Strategies to manage envy and pain

We have all been there I think. Seeing someone else's life and wishing it was ours. Or at least parts of it. Whether it's related to career, success, kids, personality, anything. I can admit I have been there. But I have never had as much practice with this challenging thought pattern as when my son was diagnosed with DMD. My world fell apart and I watched moms around me thinking more freely without worry, watching their kids achieve milestones while I sunk into a "why me, why our family" pattern. It has been five years and this spiritual exercise I can say has made me a stronger person and a more secure person but I can't say it still is not difficult when the dark thoughts occur. They occur less for sure and when they occur, they occur for shorter periods. But still there are moments when I see parents with their kids crossing the street or playing in a soccer game when I envy the carefree nature of their day.

Lately, I have had an even more painful version of this occur. There is a new genetic treatment on the horizon for DMD. It is incredibly hopeful and even inspiring as we have watched boys in the studies walk longer and even better, implying there is room for reversal! This is astounding and progress I have seen unfold in our relatively short time being parents of a child with DMD. The clincher is that the treatment helps kids with a mutation that my son does not have. He is of the 15% of DMD boys who cannot ever benefit from this treatment. He cannot be one of these boys we have watched. And this is utterly and heart wrenchingly painful. It sort of seemed natural to be envious of families whose kids are healthy. But now there has been envy for even those boys who have DMD who have a chance Zubin cannot have (at least from this treatment).

I explain all of this not to get sympathy. I explain it to show that I have had a good deal of practice, for a wide variety of reasons, with managing emotions when life seems easier or better for others. It happenned before DMD. It happens after, albeit in more painful ways. So what do you do when this happens? How do you spiral out of the destructive darkness of these thoughts and thrive?

Here are my strategies. I cannot say they are researched, except by this open-hearted mother. But I can say that they work for me and you will have to try them on yourselves.

1. Feel the darkness. Feel the pain. There is no good to resisting the pain. The truth is if you are wishing for someone else's anything, there is some grief within you that needs to be expressed. Sufferring occurs when we resist the pain. Simple equation: Pain X resistance = suffering. no resistance, no suffering. Just pain. So let the pain be so that can be what you are processing, not all the superimposed suffering that comes with resistance. Be honest with yourself.

2. Be vulnerable. Either with yourself or even with others. If you feel grief, envy, resentment, pain, share it openly. Either in your private journal, therapy sessions or with loved ones. Wherever you feel safe. This vulnerability opens our heart and is the only way to live life. In fact, without it, we are closed to life around us.

3. Breathe deeply. That's right, breathe deeply. Make space and opening within. When we feel difficult emotions, we close our hearts and we constrict our bodies. So breathe deeply and allow whatever to flow to course through you. Not only does it create space for  your body, it creates space for emotions to be held in an open, accepting way. It also stimulates our parasympathetic nervous system so it physiologically helps us move away from the stress that these emotions can cause.

4. Be curious instead of judgmental. If we are openly curious with our emotions, we can hold them in a loving and accepting way. You can even say to yourself, "what is this grief I am feeling?" "what is this pain in my heart?" Say that to yourself instead of "There I go again, feeling jealous. I should be able to handle this." That is not open and accepting. That does not create space and without that space, you cannot be loving with yourself. And if you cannot be loving with yourself, the world cannot hold you in that regard either. It starts there. I read once that Buddha described the path to lovingkindness in the metaphor of a glass of water. If you put a spoon of salt in a glass of water, you will taste it starkly. If you put it in an ocean, you will not notice it. The salt is our grief, our pain, our resentment. The ocean is a wide, expansive loving heart. The larger and more accepting our hearts are, the less we feel the salt of daily life.

5. Take the dark thoughts to a different level. As I said before, authentically feel them. But then move them to a higher vibration. That depends on your faith, your belief system. How do you ascribe meaning to pain or challenge or difficulty? Why do we experience it in life? If you don't know, work first with this spiritual question for as long as you need to. Ascribe your own meaning, your own truth. When you have that, it becomes smoother to move this darkness into the realm of meaning. I will give an example. But remember this is my truth and very possibly not yours. I believe Zubin's life has a higher purpose and when I feel the pain of his disease, I remember that to move my pain beyond this physical realm to a spirtual realm.

6. Practice gratitude. Always practice gratitude. I could say it a 1000 times and not underscore how important this is. I believe gratitude is the key to thriving and I have formally practiced gratitude for quite some time now.  So I feel deeply grateful for Zubin, for his path and how it has taught me. It has given me wisdom, it has given me much more than I can explain in this paragraph. So when I am sad about his decline (which occurs often), I then move it to a level of gratitude. "I am grateful for what this is teaching me, I am grateful for my life, for my path..." Gratitude is said to vibrate at one of the highest frequencies. No matter what your belief system, this can ring true for most of us. We feel much better in our skin when we are grateful rather than when we are bitter and jealous. It moves us to a different place.

This is by no means a complete list. But you have to start somewhere and these are pretty powerful places to do that. There is nothing wrong or unnatural about feeling jealous or pain around whatever you are feeling. That is human. That is what we do. But the key is to move it eventually to a different place, create spacious and openness and bring meaning to your suffering. 

Wednesday, May 8, 2013

Listening to our bodies

I wanted to give an example of the way that our bodies have wisdom for us to thrive but we need to listen. We need to communicate between our mind and body so that we can understand what we are feeling and then how to "feed" ourselves to move through the emotions. 

On Sunday I woke up like any other day. But as the morning progressed, I felt like I was in a mild funk. Nothing huge, just not feeling like myself. Maybe it was something I ate or not enough sleep. But as the morning moved on, I also felt a slight heaviness in my chest. I stopped when I got a chance, put my hand on my heart, closed my eyes and took a few breaths. I then directed the breath into my heartspace and sat quietly to see what arose. I soon felt a few tears and the heaviness started to feel like it was rising up. It quickly dawned on me that I was feeling sad about something that happened the day before.

We had been having a lovely family day, enjoying the warm spring weather. In the evening, we went to a beach in town and sat, played in the sand, and relaxed. When it was time to go, I brought the car around to pick up the kids and my husband. They were crossing the street to get to my car when Zubin fell flat, on his face, on the hard concrete of the street. I immediately heard wailing and realized what had happend. He had some pretty bad scrapes on both kness, one elbow and his thumb. Since he is prone to fractures, we were concerned he had broken something. It may sound like a common occurence, a child falling.

But this is different for us. Zubin has been falling much more. He just doesn't have the strength to recover when he trips. And in this instance, he was holding his sister's hand who was holding my husbands hand. And their gait was too swift for him, causing him to trip and not recover. He turned out okay, other then the pain and cuts, and although my husband and I acknowledged why the concern went further than it would for one of our other children falling, we tried to move on with the evening and just attend to what he needed. 

But here I was, the morning after, not consciously thinking about it, but clearly affected. I felt down and literally weighted down in my heart. I opened my eyes and felt the tears flow. I allowed myself to feel all the sadness of that moment. And then I stepped away from my mind and tried to witness what was happening, to see what stories I was telling myself. 

I had storied of how he would just keep falling. How this was an omen of his steady decline. How I was worried for him to be alone anytime without us there to watch him closely. The stories rolled and rolled and I just watched them. Then I closed my eyes and started the process of moving through this sadness. 

First, reminding myself of the absolute truth of the moment. The only truth was that I am a mother who is scared for my child and sad for his suffering. All of the other fears I was contemplating had not happenned and were future fears. The only truth was the tears flowing at that moment. Then I tried to see all of the workings of my mind as stories. Although my son has a critical disease that has a known fate, I still don't and can't predict what will happen. None of us know the future and fearing it has no purpose. All of my fears were based on stories I was spinning and not on things that were actually happening. All I could do was sit in the present with what was actually happening right there. I did this for a while and then I proceeded to use movement to let what I was actually feeling right then flow through me. Not to "get rid of it," just to allow it to flow. The mind stays stuck in one place if the body does as well. And so I went for a walk. I focused on the walk itself, what was around me, and allowed my mind to settle. 

None of this means I am happy about my son falling. It does not mean I deny the diagnosis and condition he has. All it means is that I need to sit in the present every day. It is all and everything I can do. If I sit in the past or future, I will wallow in stories for my mind to cycle through. And it means my body has deep, wise messages for me...if I just listen.

Thursday, May 2, 2013

Feeling alive

"I was probably happier five years ago but I also have never felt so much joy like I do now"

This is what I told an old friend that I reconnected with last week. She and I went to college together and had not sat down together in 20 years (!) We had a wonderfully rich catch-up about our lives since Chicago and where we are now. This of course, included my story with Zubin to be complete. She was tearful listening to the gravity of his diagnosis and the last five years of heartache my family has endured. But I had to follow that up with the gratitude I feel for my life and so in that context, came this statement.

I have thought of this statement so much in the last week as I contemplated how crazy it must sound. How can you feel so joyous as you watch your son decline and know the end is fated for him? And yes, it has been so painful, especially in the last year as his weakness has become more stark. As we change our home to be more accessible. As we have to more often confirm his statements that he cannot keep up with children or he is not strong enough to do whatever activity is happening in front of him. Every moment of every day can be a struggle for him.

But what I said was real. What I said was so true. You see, there is no greater joy in this life until you allow your heart to completely break open. I really believe this. I am living this. I live each day in the most real, openhearted way. This means I feel so much sadness that it is hard for me to convey. I can tear up just picking my son up from school and giving him a hug because I know one day he will be too weak to put his arms around me. I can feel so much grief when I see other families doing things that are hard for us. I can cry so easily when my older son says that he thinks Zubin is getting stronger. His hope is so moving for me.

But I also smile wider and harder at the smallest things. When my kids say something funny, when a butterfly flies by in these warm spring days, when the sun hits my face and I am walking down the street with my own two legs, when my husband gives me a soft kiss on his way in the door. Sometimes I walk through the day, marveling at how perfect my life is. It is so very perfect because all of the outwardly imposed criteria of perfection are gone for me. I am not a slave to that anymore. I don't live in fear of life. Life has handed me a card I never thought I would have to face. But I am facing it. I am walking one foot in front of the other every day and there is no reason to be scared.

You see, there is still joy in every moment, even the difficult ones. And so I have an unwavering faith that even when it is so very difficult, (and it often is) that the tide will turn. Nothing difficult or pleasant lasts. It is all ephemeral. So all and everything we can do is have this moment that stands before us and savor it.

People ask me why or how you would want to savor a horribly difficult moment. All I can say is that through the greatest pleasure or pain, if you are really feeling it, if you are really staying with the emotions of the moment and not pushing them away...then you are really alive. And that's where my ultimate joy comes in. I am joyous, I am blessed, I am accepting and embracing of my life because it is what it is and I face it and feel it every day. And so, I am alive.

When we can feel this alive, we can feel real joy. So yes, my life is sad. I am not saying it is more or less sad than many in this world. I don't compare suffering, I just know we all experience it. This is not the way I thought mothering would be for me. I did not think I would have to endure a child dying in front of me. I did not think that one day I would have to somehow support my other beautiful children when they lose their sibling. None of that was something I asked for. But it is my life and what I do know is that through all the pain, there are so many miracles. The miracles are in the everyday moments and I am alive enough to see them.

And so my life is perfect because it is my precious, miraculous life. My life is perfect, not depsite Zubin, but because of Zubin. There really is more joy in my life. And for that I can be grateful...

Monday, March 25, 2013

Staying with what is...

I have had a good reminder over the last few days of how empowering it can be for my physical and emotional health to stay in present moment awareness. I have had multiple moments of those dangerous "What if...'s " that can spiral into destructive attachments to the past and unproductive imaginings of the future. Most centered around Zubin, but some centered around mothering, life in general. Do you ever find yourself in that situation where your child is playing in the park in front of you and your mind wanders to wondering if things would have turned out differently, "if...."

It may seem harmless, a little daydreaming, but it almost never amounts to productive mental or heart-centered time. And most definitely it ends up in lost time right now because while you were doing that, the present moment just flew by without you knowing it. We all do it much of the time whether it is about our children or maybe our careers, anything.

This past few days, it happenned to happen a lot around Zubin and his progressive weakness. It can just be heart wrenching to watch him sometimes struggle to just keep up with not only other children, but with his own desires for movement. So this time instead of staying stuck in the "what ifs" and the "if only's" I moved myself to the mantra, "What is..." Everytime I imagined life differently, I repeated to myself, "What" That's it, nothing mind blowing, just a few words but what an amazing release it can have. The truth is just that, almost always, about anything. "What" There is not anything else. There is not the decision you could have made, or the thing that could have happenned to you. Those are all exhausting overtures of the mind taking us over. The truth is those things did not happen and you did not make those decisions. "What is...Is."

We create multiple layers of suffering over the ones that already exist. It is enough to suffer through whatever it is we have in our lives at the present moment. But to add on the layers of wishing it were different or wondering how we could have controlled the situation to look different, just creates more suffering. It's the old equation,
Suffering= pain X resistance

There's always the pain. And if the resistance to the pain is high (the wishing it were different, the attaching to how it could have looked different, the wishing we didn't wish it were different), then the suffering is exponentially higher. But look at the equation again. If the same pain is there but our resistance to accepting it is zero, then the suffering is.....Zero! That's right. We don't have to suffer just because we have pain in our lives. We just have to face the pain and not resist.

So, today, I woke up lighter and freer. What is today feels doable. It feels rich and it feels full of blessings. The pain has not changed but my resistance to it has. What What That's all, short and simple. No fancy tricks. Just taking what is and letting it be. We have the power to not suffer. It's our choice....

Friday, March 22, 2013

The little things of everyday life

Today, Zubin had a move-a-thon at school, one of those events that makes most parents excited and mushy that their child will be participating in an event to raise money with their own sheer physical exertion. It is exactly the kind of event that makes me want to cry. So when I found out about this event, I quickly got on my email to Zubin's teacher and suggested he get him a wagon! Why not, he could move around the laps too, just a different way. She was on top of it, a parent loaned us one and we were off. Zubin was getting more excited day by day, as it got closer.

The day before, I confirmed with his teacher that we had a wagon. We did. Great. So I went this morning to surprise him and watch him in the event. He had painstakingly asked some friends to donate money for his laps, painstaking because that kind of communication is difficult for him. So I was excited to watch him. I got there, found his class, but he or his wagon were nowhere to be found. The kids, all of the first graders, started running and almost as fast as they took off, as quickly came my tears. Tears for so many reasons. Because of my fear that he would be excluded yet again, that he would be sad later he didn't get to participate and blame it on his muscles (something he has done more of lately), that my child was not considered part of the class, that the wagon was forgotten (exactly why I went, thinking that if this happenned, I would put him on my back), and also because my emotions were already all mixed up this morning so they were right at the surface ready to bubble up.

A few minutes later, I saw him come out with his aide, Andrew, and the wagon. He got in with out help and off they went. His friends quickly came to his side, to pull the wagon. They took turns, with one in particular, taking the brunt of the work and of course Andrew pulling it in between. The tears continued to come as I watched the kids do what I feared so much the adults wouldn't do, include him, show him compassion, and treat him like one of the kids. They were amazing.

It was a morning of so many emotions for me. The sadness that often surrounds such seemingly little daily events, the incredulous triumph of watching compassion in action, all of it wrapped up in another strong emotion-a feeling of isolation. I had a feeling of wanting to explain (to whom I don't know) but not knowing how that this morning was emblematic of so many times for me, where I feel isolated because my experience is so different than the moms around me. Today, I felt good that I could just breathe in the triumph of the morning and breathe out the isolation but a piece of it always sticks in my heart.

It was a glorious morning for so many reasons but mostly because I had so many strong emotions present at once and I allowed all of them to flow. That's a good day...

Saturday, March 2, 2013

Today, in my post, I am honoring a young boy and his family who have been poignantly walking a path that few of us can imagine. He has DMD and passed away this morning at 1:30 AM after coming home from the hospital to die. So young, so sad, yet so meaningful and real. This family had the courage to walk this path with strangers, with the world and show that their faith in life and God would pull them through. You can read more about them on their facebook page:

I have followed them not only because my son has DMD, not only because I know my fate will intertwine with theirs. I have followed them because they have chosen to do what I think is our only choice if we want to live this life fully: to show up to each moment of life with presence and authenticity. We can choose to deny life, all of its pain. Or we can choose to meet it with acceptance and say that life has meaning and wisdom, no matter what it brings. They are an extraordinary family and I only hope we can bring to life all that they have. They are touching lives around them, opening hearts, and giving exponential meaning to a life cut short only in length. Rest in peace, Mitchell. Your spirit is far larger than most of us can dream to be...

Wednesday, February 20, 2013

Sound meditation

I am in India, just arrived last night and have basically not slept due to jetlag. That meant that I was up very early this morning with no one else awake in my house. And so I seized the opportunity to do my morning meditation. Now this is India and finding a "quiet" place to meditate is almost a joke. But the fact that I was alone was in of itself astounding.

As I sat to meditate, the cacophany of sounds present in the early morning in this bustling city of Mumbai was the most omnipresent thing. And so I took the chance to do a sound meditation. I thought I would share how to do this since it is one of my favorite meditations and I usually do not get the opportunity to do it so early in the morning. If you practice this for a while, it becomes so second nature that any sound can become a lulling, relaxing moment, regardless of the sound.

In this meditation, sound is used to anchor focus instead of breath. So if you are accustomed to doing any sort of breath centered meditation, you know that you can use that as focus and as thoughts come and go, you can gently pull yourself back to your breath. Over and over. Same thing here. Use the sounds as your anchor. Stay with them and if thoughts come up, which they inevitably do, bring yourself to just the experience of the sound. Often, thoughts will spiral from the sound itself as we draw our own stories from what the sound reminds us of or the emotions they evoke. This meditation becomes a practice in mindfulness as we practice just being with the sounds, not attaching to them in any specific way. So if you hear a particularly disturbing sound, try not to resist or push it away. Just sit with it. As well, if you hear a pleasant sound, do not attach to it, hoping it will last for your entire meditation. In this way, we learn to just be with the sounds, instead of resisting or reacting to them.

As you do this, it becomes clear that sounds, like thoughts and emotions, have nuances and dynamic character. Even the most irritating sound has change to it and eventually shifts a bit. We learn in this meditation that nothing remains hardened and the same, not even a beautiful sound. Even those evenutally dissipate. And so the meditation becomes a metaphor for life in so many ways. For one, we learn non-attachment. We learn mindfulness and the benefit of just experiencing instead of explaining and analyzing. And we learn the most important lesson of meditation, starting over. No matter how much we analyze, think, attach, resist, or react, we can always just gently come back to the experiencing. A kind reminder.