Home Is Where Sister Is

Matthew came home from the hospital Thursday afternoon after a long ordeal with doctor appointments and discharge bureaucracy. Matthew had to wait again for his pain medication because my dad had to run to the pharmacy and get all of the prescriptions filled, which takes time. Again, it is beyond me why all of this coordination of care could not have been organized by the hospital. With enough notice, everything could have been set up for Matthew upon discharge, but instead, all of it is left up to the family and we were not given any of the details until the day of discharge. Maybe in my free time I will pursue some sort of letter.

Matthew finally decided, hesitantly and with unimaginable frustration, that living with me in an apartment in San Diego would be ok in the interim, until he is stronger and farther along in his recovery process. I know how much he wanted to go home, but my intuition was telling me in an extremely loud voice that going home would not be the best option just yet. While I am so grateful and relieved that Matthew is here with me, the transition has been hard. I certainly do not want to be the source of disappointment and yet, I am willing to be for my brother's sake. I am learning to be patient and trying my best to avoid taking his expression of frustration and anger personally. The weight of what has happened is so heavy at times and I know he feels like he is carrying the whole burden of his recovery on his shoulders. He feels completely responsible for the amount of progress he makes. I hope to be a support to Matthew on this journey. I hope to remember my role and my purpose, even on the hard days. I know Matthew loves having his friends around and all of his friends support has been amazing. I need everyone's help and support in this and I know that my brother has some of the very best friends out there who will help carry him through this.

I feel at a loss for words tonight. I want to write about my own experience, but so much of my experience now is tied into his, I don't know where mine stops and where his begins. I may leave more of the details for Matthew to describe. My intention is to provide updates to the best of my ability based on my own perspective and experience. I hope this makes sense.

Going Home

Matthew will be discharged from the rehab hospital this Thursday. My family and I had no idea things would progress so quickly. It has been quite an experience to go from ICU to this in just over one month's time. I have experienced the lowest lows and the highest highs in the name of worry and sadness, love and joy. I have a newfound respect for life in all of its greatness and healing power. There is a place in my heart where I also find an internal sadness. It's a sadness that simply has not gone away and at times continues to grow stronger. I have lost part of my brother in this accident. Aspects of him will never be the same. He has made tremendous leaps and bounds over the course of a short amount of time, and again, I feel I risk discounting his progress in my expression of loss. His motivation has been inspiring to witness, yet I know there are pieces of this trauma that none of us, including he or I have fully come to terms with. To see him go immediately back to his house in North Park is terrifying for me. I have tried to ask my brother to give himself a month, to live with me in San Diego, to really allow the healing process to begin. I understand his want for independence and his strong desire to go back to his life, but I worry. What happens when everything is the same except for him? I am continuing to struggle with what is right, with how much of his family's voice it is helpful for him to hear. He is 24 years old. He is a man. He is my little brother. He is my mother and father's son. He is a best friend to so many. He is wise beyond his years. He is so young. He is still learning. How do we compromise? How do we come to a decision? I wonder if he looks back in several months or years, will he be grateful to us for intervening? Will he push us away? There is so much to feel angry about, so much sadness to feel. I want to be there with him in those moments, as much as anyone. Maybe he will listen to his big sister. Maybe he won't. To me it's a safety issue. To him, it's his life. I love my brother. I have to trust in that. I have to trust love.

Moving Fast

I know it has been several days since I wrote last. I was back and forth from San Diego to South Pasadena. My life is split between two places and sometimes I feel like I don't even know where I am or what my role is. I'm trying to stay afloat, but the stress is wearing on me and I won't be at all surprised if soon I break out in a strand of pimples that spell "STRESS" across my forehead. I was joking earlier that I would prefer that to the cold sore that appeared out of nowhere the other day and seems to only be getting more severe, despite the rapid Abreva treatments I applied.

So here I am, sitting late at night in San Diego in front of my computer trying to figure out the right words to convey the multitude of feelings and experiences I have had over the past week. Matthew is DETERMINED to get out of the hospital and return to his life. His courage and strength are admirable and demonstrate a will to move forward that goes unmatched by anyone I have ever met. I do not mean in any way to diminish how grateful I am for his determination and recovery so far. I must say, though, that I have had a difficult time coming to terms with him moving home so quickly. He wants to go back to his roommates, back to his friends, back to his life, and I certainly understand this desire. I also am so afraid. He came so close to death. I am afraid he is pushing himself too hard, too fast. I am afraid that he will injure himself in the process of attempting to maneuver on his own. I am afraid to feel the feelings I felt the first week after his accident. Of course, logically, I know that I have to let go, and that he technically is an adult and is in charge of his own decisions, and that I can't protect him from everything, and that I have to be able to manage my own feelings without allowing them to interfere with his process and progress. But let me tell you, this is hard!!! I think I have a taste now of what it might be like to be a parent and the many times a parent has to "let go" and allow her child to get to the next phase of her life. It's difficult to feel like I know what might be best for my brother, but to not be on the same page with his ideas about his own future. So, I sit and struggle. I write it all out so that it is not so caught in my heart. I write it so that I remember my own process. And I write for support.

We will see what the next week brings. I don't think Matthew will be discharged quite as early as he is expecting and we are going to be making sure that the insurance is not trying to discharge him early for the sake of monetary savings. In any case, we are on the brink of another transition, and as you can see, I have a hard time with accepting all of the changes and moving forward. I see my brother and I see how much love is there and I also see how some things never change. I will always try to protect him and he will always tell me, "Erin, I can do it."

I will keep everyone posted about the outcome of our team meeting, which is taking place this weekend. Thank you again for all of your support and kindness. You have been amazing.

The First Day of Anything is the Hardest

I came back to San Diego Thursday night so that I could be here Friday morning to interview with Channel 10 news. I don't think the story ever aired, as it was scheduled to Friday night. Matthew was also moved from Scripps Mercy Hospital to a rehabilitation hospital in San Diego. They determined he was ready to begin a more rigorous physical therapy routine. Unfortunately, a bureaucratic nightmare determined Matthew's well being yesterday, as the new hospital could not dispense his pain medication until it was "in the computer" from the previous hospital. At first, I assumed Matthew might have to wait an hour. An hour turned into nearly four hours and by this point the pain was excruciating. I asked the nurse several times, but unfortunately due to whatever policies hospitals employ, she could not do anything to make my brother more comfortable. The problem is that once pain reaches a high enough level, it becomes extremely difficult to control and to reduce. Matthew's nurse arrived with the medication. She maintained a very kind demeanor. He took it, but half an hour later, he was still in tremendous pain. After some time, we asked if he could be given an additional dose, but again, he had to wait a long time. I arrived at 3 to the hospital and at 7, he was still suffering. I took his hand and I ran my other hand through his hair and around his forehead. I tried to coach him to breathe deeply and focus on his breath, one moment at a time. After a few minutes, tears began to fall from the corners of his eyes. I told him how much I love him and I how glad I am that he is here, even though it is so hard. I noticed on the pain chart earlier, that a "10" (the highest level) is when someone's eyes are closed and they are moaning or crying. Here he was, a level 10 and there was nothing I could do. I kept telling myself that the first day of anything new is always the hardest. There is an adjustment period, no matter the excitement or anticipation that proceeds the event. My mom spent the night with him at the hospital last night and she watched him get into a wheelchair this morning. I think my brother was a bit distraught after his experience. He hadn't realized how much he is still dependent on the medication to support him in feeling well again. It was a wake up call and a reminder that this is a long road.

I have been hearing so much about the people of Haiti and the terrible plight they are suffering. I can't help but wonder why in an age of so much technology and innovation do people have to suffer so much after a disaster? Why can't supplies get in? Why can't we just figure it out and get past the obstacles? At times my lack of patience flares up, as I see my brother's suffering as connected to every other person's suffering in a tragedy. No matter how far we get, pain will always be. It is a part of our existence. It is part of our being. It is how we measure happiness and joy, against the depth of our pain. So as my brother breathes through his pain, I have to be able to breathe with him. And I will keep breathing for all those suffering, whether oversees or here at home.

New Schedule

I'm writing from home in South Pasadena. I have been here since late last night and it feels weird. I feel relieved in some ways. I went to yoga this morning, which was good, but also difficult emotionally. I am good friends with my teacher, so he purposely engaged the class in several heart-openers and releases through breathing. I felt such a well of emotion the entire class. As much as I wanted to be there, I didn't want to be there. I am realizing this seems to be the theme in my life lately.

I apologize that I have not written until now. Traveling back and forth provides me with less time to sit and write, unfortunately. However, I am always thinking about words I would like to write when I have the opportunity. :)

On Saturday, I made it to the hospital just in time to see Matthew get into a wheelchair for the first time. He had to sit on the edge of his bed for several minutes with his feet on the floor just to acclimate his body to sitting upright. He had the support of a very large male physical therapist. I realized that Matthew's muscles have atrophied so much, the simple act of sitting up is tremendously difficult. We all take this for granted everyday! (Well at least I did until now.) It was very hard for me to watch my brother struggle again and look so beat just from sitting. On the same token, there he was, SITTING UPRIGHT!!! He had enough strength to even wheel himself for a couple of minutes. He saw the 10th floor of the hospital for the first time from that perspective. He saw the view (an amazing ocean and city view from huge windows in the 10th floor lobby) and oriented himself. After 20 minutes, he was completely exhausted and it was time to get back in bed. This proved to be a feat, though, considering how tired he was already. This did not discourage him and after he was back in bed and had gone through incredible pain in the process, he asked the physical therapist about his time frame for being able to get into the chair himself. Matthew is looking ahead and he is so determined!

Sunday, Matthew sat in the wheelchair for over an hour. He ate lunch in his chair and went up to the rooftop patio to get some sun. I didn't see him at this time, but Amber was with him and kept him company. Who goes from 20 minutes in a wheelchair to over an hour the next day?? This means he is building muscle everyday and continues to have the same determination he had the day of the accident to live and not just to live, but to live fully. I wonder how many of us, including myself, at certain points in our lives have lost this determination, have become so caught up in the drama, in the distractions, in the negativity that we settle for our lives the way they are, or even worse, we resent our lives for the way they are. We stop trying to grow, to become more conscious, more loving, more compassionate. I wonder how many of us would come back to our determination if we knew that we may never use some of our limbs in the same way or that we may be bound to a wheelchair for quite some time? How many of us would dream and not just dream, but count on getting back on a bike someday? These are our lessons. As witnesses, we do our part by taking into consideration what we might otherwise miss when we are not paying close attention.

My mom has been counting the number of miracles that have occurred from the start of Matthew's accident. I don't know the exact number, but I know, according to her, there may be too many to count at this point. I talked to my mom on the phone this evening and she told me she had an amazing story to tell. She said that she went to the bank and she explained to the teller what had happened to Matthew. She said he listened so intently and then began to smile. At first, she and her friend who was with her did not know what to make of his smile. All of a sudden, he revealed that he was so happy Matthew survived the accident. He explained that he had seen the accident. He was on his bike on his way to work and had not worked at the bank very long. He saw my brother get hit by the truck and he was so worried about him ever since. My mom and her friend stood there in disbelief. My mom's story sent chills running down my spine and every time I re-tell it, I have the same experience. These stories are powerful. We are all so interconnected and our lives affect each other in ways we would never expect. We have made so many wonderful friends through this experience. We have seen the greatest of generosity and compassion. My brother's hope is an example of the hope we can each hold for ourselves and each other everyday, even in the simplest of situations. Maybe this means taking a risk to step outside our comfort zone and get to know someone and really listen to them. Maybe this means quieting our mind and returning to our kind spirit when we begin to beat ourselves up for making a mistake. Maybe this means coming to terms with the fact that our lives are not perfect or fair or guaranteed. For me this means trying to breathe more fully because I have life within me. It means building patience. And it means believing in a power larger than myself.

Feeling More

Today Matthew talked about feeling more sensations in his body. He described these sensations as painful, but also mentioned that the doctors told him, "This is good because it means you are healing." It must be so frustrating to feel pain and simultaneously experience an inability to move, while also fantasizing about riding and being out and about again. He takes it in stride, welcoming his visitors to talk about their normal activities, including riding. He wants something to work towards, to look forward to and he consciously chooses this over resentment or settling for less. He would probably be really embarrassed to hear me say this, but he truly is an example of the power of positive energy, of focusing on healing and wellness in the most tragic of circumstances, and I believe he has a purpose to serve in this life. We will watch meaning unfold as it is displayed both to us collectively and as individuals as we move about our lives. There are so many lessons of humility and courage and honor. There will be times when we are reminded of what is important, when we imagine the pain that Matthew had to endure and we will see our own pain as insignificant in comparison. We will build compassion for ourselves and each other, knowing that life hands each of us challenges we never knew we could handle and we succeed in the light of our resiliency to become more full human beings. Matthew's struggles touch us all and invite us all to grow a little. I want to protect him from his pain, but at the same time, maybe he is protecting me by teaching me so early in my life more about what is important, more about what is possible, and most of all to always hold tightly to hope.

Success!

I apologize for not writing last night. My family and I were at the hospital late visiting with Matthew. He did not get out of surgery until much later than initially expected due to another person's surgery taking longer. The pelvis surgeon called us while Matthew was still in surgery with another doctor to inform us that Matthew did not need pins in his pelvis. He said, "It's not a pretty pelvis, but it's a stable one and that's what's important!" He also told us that Matthew's leg was out of traction. Matthew needed some new skin grafting, but not much. They replaced the other catheter while Matthew was anesthetized, so luckily Matthew did not have to endure any more pain related to that.

We saw Matthew a few hours after his surgery and he was in good spirits, despite some grogginess. He said that his leg started to hurt about an hour after the surgery and the doctors were not expecting that and therefore, had not prepared for it. He said he endured incredible pain for quite some time before some pain medication started working. He maintains the strength and courage of a lion, though, and although he talks about the pain, he never complains or resorts to self-pity. He talks about it like "it's over now, so moving right along."

I returned to South Pasadena tonight as I have work in the morning. Next week, I will begin my part-time status, where I will essentially split my time between work and Matthew in San Diego. I am going to give it a try and see how it goes.

My family and I had the opportunity to take our dogs to the dog beach in Ocean Beach today. It felt so therapeutic for my family to have some time outside amongst the wind and the ocean and many, many happy playful animals and people. We brought Matthew some delicious food afterwards from the Peoples' Co-op and then I went to the house and made a healthy, hearty dinner for my parents and me.

My mom and dad felt so happy today to see my brother eating well...a sign of life and wellness. I was happy to be around. I am happy to have my life and I am so happy to have my brother.

Vulnerability

This afternoon, I made the trip back to South Pasadena for the first time in 17 days. A part of me was excited to return to my life, even for just a few hours. I was happy to see my cats and be in my apartment. I am going back to San Diego tomorrow morning and I am hoping to get there to see my brother before his surgery tomorrow afternoon.

We had a bit of a scare this evening, which served to remind me how vulnerable Matthew still is. My mom told me that the hospital staff had nearly missed a crucial detail in my brother's care. Apparently, he had been suffering from "bladder spasms" and they had given him medication. When I first heard "spasm" the other day, I immediately thought "infection;" however, I didn't think to say anything and just went with the doctors' and nurses' decision to give him medication. It turned out that his catheter was not draining properly and his bladder was extremely full. They caught it at the last minute when a doctor who was about to leave for the evening was called to evaluate him. Matthew went through excruciating pain having another catheter inserted, and besides that, his urine was beginning to crystalize. My cat nearly died a year ago from a similar issue. I know that everyone is trying their best to keep Matthew safe, alive, and well, but I was suddenly struck by fear at the thought that the slightest error could be fatal. My mom is going to talk to the staff tonight and we are going to make sure to continue to follow up to do everything we can to advocate for my brother's well being. Thank God we are able to advocate. I thought of those of us who do not speak English or who are not able to take time off work to be at the hospital as frequently as we are. I thought about what might happen to the lives of those less fortunate. I once again felt grateful for my family's abilities and abundance of love and support. None of our lives are worth more than any one else's, yet we are separated and segregated by external factors that determine our superficial worth, such as money, power, and education. I pray that Matthew is safe. I pray that he is not subjected to the pain he was subjected to tonight again and I pray for all those who need our love, support, and advocacy. I pray that we all have voice when we need it most.

Please continue to keep Matthew in your thoughts and prayers.

Computers...I know nothing about them!

I want to apologize for the difficulty so many people have had when trying to post a comment. I am not computer savvy and I can't tell you why it's not working. I think if your comment is rejected at first, you can try to push the "post comment" button again and it may work. I ran across that problem a couple of times when I tried to post a comment.

Matthew is continuing to get stronger, although he suffers at night with a great deal of pain. Hopefully, he will have more medication tonight so that he can sleep better. He has been getting tired easily by visitors, but at the same time, seems to really appreciate all of the positive energy around him. I think that the time spent on his back is trying on his patience. He has mentioned several times that he looks forward to Tuesday when his leg will be removed from the traction. At that point, the pelvis surgeon will test his legs to determine whether his pelvis is stable. If it is stable, he will allow it to heal as it is. If he determines it is not stable, he will insert a pin into the back of his pelvis to achieve more stability. After that, Matthew will probably be able to get into a wheelchair and at least move around a bit.

I am amazed by how experiences like this slow life down. Matthew is looking forward to Tuesday when his leg can come out of a pin and it's possible that he may be able to roll slightly on his side to sleep. He can't wait. Three weeks ago I had difficulty holding onto those fleeting moments of pleasure. Many pleasurable moments would pass by and I did not notice. I intend to be mindful, but my mind was cluttered with the routines in my life. Whenever I go for a run in my neighborhood in the Pasadena area, I notice how my legs move so freely and I feel a sense of gratitude for my ability to run, for my legs and my health. I notice the breaths of fresh air I can take, the smells of the different trees and flowers, and the sounds of the birds. I feel grateful that I live in an area where I am surrounded by the beauty of nature. As my day goes on, though, I often lose sight of those moments. I stop noticing. I become frustrated with the amount of work I have to accomplish in a day. I become more and more worried and obsessed about what my future might hold and as my focus deepens on worry and frustration, I miss moments of beauty. I know Matthew will fully appreciate the moment when his leg is released from the pin and the weights. I know he will savor the first turn he takes onto his side and his first breath of fresh air outside of the hospital. This is such a clear reminder to me to appreciate, to express gratitude, and to notice the moments of beauty and of freedom in my life.

HAPPY NEW YEAR!!!

I want to wish everyone a wonderful new year!! My family and I are truly grateful for the blessings we have received and we feel ready to begin a year of healing and recovery. I am going to keep this short for now, as it is late, but I will write more tomorrow. I realized that I may not have included as many details about Matthew's current state of wellness as I would have liked in my previous posts. I want everyone to know that Matthew is eating solid foods, he is laughing and reading, he is planning his future, and trying to move around as much as possible while stuck on his back. He is amazingly strong. In this process, I recognized my own propensity to defend Matthew's condition, losses, and ailments. I wanted to emphasize his need for continued support while also highlighting his progress and sometimes this is hard. I know the losses he is suffering and the grief he is experiencing in some moments must be tremendous. Sometimes it hits me and I am overwhelmed by sadness, loss and anger of my own. This experience serves as a reminder that life is full of changing emotions, waves of different kinds of energy. We are all subject to react to these, to feed into these, to emphasize or minimize them. When a tragedy occurs, though, it seems as though we are subjected to the most intense waves of feelings and energy. We are tested in our abilities to allow each moment to come and go, to give into its power only with intention, to continue to feel the gravity, even if it threatens to break our hearts. At the end of each wave, we are invited to take a breath, to witness our own courage and strength, to heal a little more, and to appreciate the fullness of our lives.

I wish everyone a new year full of good intentions, positive energy, and most of all connection to our human spirit, full of compassion and wisdom.