Despite the fact that Mary Elizabeth’s infection seems to be going away, I’ve been troubled by her lack of responsiveness. That fact, combined with increasing difficulties with sleep is leaving me a little ragged around the edges. So when I left the office today – later than I would have liked – I wasn’t exactly feeling filled with gratitude for all my blessings. In fact, I was in a pretty bad mood. So imagine my chagrin when it turned out that all the public transportation leaving Canary Wharf was either out of service, or so crowded that boarding was an impossibility.
So I swung by the hotel and dropped off my briefcase and walked the 2 miles to the hospital. I was walking fast, because visiting hours would soon be over. As I was walking along the now extremely familiar streets of Tower Hamlets, I was trying to figure out what was making me feel so miserable. As I passed St. Anne Limehouse, one of the Hawksmoor churches, I started to think a little more philosophically.
There are basically two ways leading from our current situation. The first path, which I was currently treading, was one bordered by self-pity, centered around fear and sorrow, and overhung with hopelessness. It was a pretty easy path to follow. I thought about the other possible way out of this – and that was to look for something constructive or positive. As I passed over Regent’s Canal, I started to think about what good things have come from our situation. First and foremost of course is how it’s clarified the depth of feeling I have for Mary Elizabeth. It’s true that you never know how much you love somebody until you almost lose them. I am grateful for that. Also, this has brought out an amazing group of friends, family and colleagues who are astonishingly and exuberantly generous with their support, good wishes and prayers. Thirdly, I was struck with the notion that experiences like this teach us something about ourselves and our ability to cope and to be resilient.
So by the time I swung past St. Dunstan’s onto Stepney Way, I was feeling better, and trying to find things to be grateful for, in the midst of a difficult situation. As I neared the hospital however, I felt the familiar gnawing doubt, and uncertainty about what I would find. The trend has been downward in terms of responsiveness, notwithstanding the lack of infection.
What I underestimated was Mary Elizabeth’s ability to rise to the occasion! When I got to her side, she greeted me with a sweet smile and a knowing look of recognition. She had a clarity that she hasn’t had for a while, and definitely seemed to follow my conversation and respond accordingly. She’s still a far way off from where she was several weeks ago, but remembering my walk over, I felt very grateful. One of the neuro registrars (residents) came by to confirm that the CSF was still clear of any infection, and if it remained so for another 24 hours, that they would remove the EVD, and replace it with an internal VP shunt, which among other things, clears Mary Elizabeth for flight.
That’s at least several weeks away however, so my plans to leave London for New York this Saturday remain in place. I told Mary Elizabeth about Elise’s coming to London while I’m gone, and I’m pretty sure she understood, although she couldn’t respond. The nurses let me stay late since I was late in arriving and I was grateful for that too.
As I left, considerably brighter than when I arrived, I decided to walk back to the hotel to take in the sights and sounds of an area of London that I would soon be leaving.
So in closing this overly long post (sorry!), I leave you with the thought that while life is a challenge, it’s how you face that challenge that’s important. You can be like I was earlier today – lugubrious and full of self-pity – or you can meet life’s challenges with grace and gratitude.
Moved in Sundry Places 
Scott,
Thanks for both the positive news about Mary Elizabeth today as well as your thoughts on dealing with adversity. However much self-doubt or self-pity you may think you have, to the rest of us your spirit and actions over these last 7+ weeks have been nothing short of heroic and truly inspirational. I hope your trip home provides you not only with much needed time with your family and loved ones, but also with an opportunity to regroup and return to London with renewed energy and spirit. Give Mary Elizabeth a big hug from all of us on this end of the blog before you leave.
Gary
Dear Scott and Mary Elizabeth, Yes, you got it. Its how we face life that colors our experience. How much you have learned and how lucky we are that you share this with us for our benefit. I am so happy that the infection seems to be beaten! Love and hugs to you both, and love again, Noelle
Dear Scott,
Your post is so uplifting, thank you. We are delighted to learn ME is back to her previously improved state. Your post reminds me of a plaque I saw recently and gave to my oldest daughter: “Life is not about waiting for the storm to pass..It’s about learning to dance in the rain.” Dance on. Kiss ME and hug your kids this weekend. Our
prayers continue.
Love,
The Straubs
Dear Scott…
We’ve never met and I knew Mary Elizabeth way back when she was Mary to me…. but I have to say that your post was spot on. But I also need to say that sometimes self pity is not such a bad thing (in moderation)…. It’s been incredibly stressful for you and your family. And as I’ve been told and will tell you, “give yourself a break”…. When it comes down to it, as you know, there are no alternatives but to ultimately be positive and move forward, but sometimes you need to be looking inward.
Thanks for continuing to keep so many of us in the loop. It’s a very difficult thing to describe what you, and ME, are going through in a way that we can understand, and I know I appreciate that very much.
I’m glad you’re taking time to take care of yourself too. This is not a sprint…but a marathon. You are so fortunate to have so many friends on both sides of the Atlantic. Be well.
Debby Perelmuter (Penn friend)
what a great story. and great for ME that she is once again progressing. your own ability to continually find God’s grace in your day and experience are awe inspiring. God Bless you, Scott, see you when you come home.
with happy thoughts
melissa
Scott,
I too have found that making a gratitude list when I’m down really helps turn things around. It’s amazingly simple but what we focus on really does become bigger. And, while I think you are entitled to some self-pitty, concentrating on the positive is always helpful to restoring oneself to serenity and positive outlook. I’ve also found that no matter how sullen I am I try to do selfless acts like help a mother with a stroller down the subway stairs. These small acts help get me out of myself and begin the transformation of thoughts to thinking about what is right in the world and my situation. Wishing you a safe journey home and continued improvement for Mary Elizabeth.
Emma
It occurs to me that Hawksmoor’s architecture provides a kind of visual equivalent to the effort you describe of wresting some grace out of difficulty. His churches are not smooth or easy; sometimes they even seem to have been put together wrong. And yet they are powerful, inspiring, and beautiful in a singular way. (At least that has been my experience.)
Thanks for the reflection. As always, my love to you and to Mary Elizabeth.
It is hard to add anything to the eloquence of the previous comments, so I won’t try for eloquence. Just quiet warmth and caring sent your way, and being moved by your passion, compassion, and resilience. And Mary Elizabeth’s. Your posts couldn’t possibly be too long.
–Grace
Dear Scott,
I was not sure what you were going to say in the post tonight. But you said it beautifully. I am happy, so happy, that MaryElizabeth is responding and will pray for that time frame to stay clear of infection.
Enjoy your time at home. It is precious.
Sincerely,l
Patty Pugliese
Life is very, very good. Have a safe trip home and enjoy the time with your children. What a lovely and beautifuly written story. Thank you . Laurie
Dear Scott,
So elated to hear ME passed another day without evidence of infection. We will pray fervently that it remains gone for another 24 hours.
I’m sitting here wishing I could express my feelings as beautifully as you do each day. Thank you again for sharing. I anxiously await each day’s entry to read how ME’s day was, but also how you’re doing. I never forget you, Lucille, and the children when I pray.
Lots of hugs and kisses for you both.
the Fixes
Dear Scott, so happy to hear that Mary Elizabeth’s infection has not returned. God is watching over you, Mary Elizabeth and your family. A trip home to see your children is good medicine for you. I have a sign on my desk at Trinity which reads “Life isn’t the way its suppose to be, its the way it is, the way we handle it is what makes the difference” I’d say you are handling life with much love, and patience. God will continue to guide and lift you up when you reach the valleys, lean on Him.
God Bless,
Bob & Carol
Scott:
GRACE indeed. This has been an eye opening experience for us as well. I have learned so much from you and will continue to do so. Having walked in a similar pair of shoes, I truly understand the different paths that our minds and hearts travel. You my friend are doing such a remarkable job of facing these ups and downs and are doing all that needs to be done in an amazing way. You are the answer to so many peoples prayers. It is a reminder to me that God truly truly does answer prayers. God is not finished with this journey, and by GRACE He will help you, Mary Elizabeth and all of us to see His glory and His love. Hope that your day is a good one today.
Kathy
Dear Scott-your capacity to relay your innermost thoughts compassionately, honestly and without pretense has been an education for us all on the receiving end. I reiterate that hopefully there is some sense of relief and calm when you are able to share and verbalize how you feel. I understand that it will take a while for Mel to come back from the effects of the infections and as one writer put it -it is a marathon and not a sprint. There have ave been setbacks along the way, but you have kept the final goal in sight. Just when you seem to need it most, Mary Elizabeth senses you need her sweet smile, and she delivers. Have a safe trip -she will be in safe, loving and caring arms. xxoob
Scott,
Was happy to hear that ME is doing better. Please give yourself a break. As difficult as it for the rest of us to deal with ME’s ups and downs, this has to be 100 times worse for you seeing someone you love in this situation. You are entitled to be down on occasion. I find myself getting incredibly excited when there’s good news and really down when there’s bad news and I’m not there to witness it on a daily basis. I’m glad that you’re coming back to the states for a while. Seeing the children will be a tremendous boost.
Can hardly wait for ME to come back home. I don’t know about anyone else but it would make me feel better to have you both home.
Love
Rita
A lesson we all need to keep in mind, it is how we approach and handle situations in our life that determine how they affect us. God bless you and your beautiful and honest words. Your blogs really make us all re think many things in our lives, especially how often we take for granted those we love and only realize it when it is too late. I am very glad that the infection is a bay and Mary Elizabeth is again more responsive. Our prayers will continue for a full recovery and for you Scott peace of mind.
All our love,
Suzy & Bob
Hi Scott –
I pray for you – that you continue to find the strength, energy and resilience to keep you going through these ups and downs. God has blessed you with a strong constitution – but it’s OK to give yourself a break sometimes and allow yourself to experience all of those emotions – the anger, sadness and confusion – just never let go of the hope. God is with both you and Mary Elizabeth as well as your family home in New York – who will be happy beyond belief to see you. Be well, Scott!
Beautifully said, Scott. I hope you continue to see more and more clarity in ME’s smile. Have a safe trip home and a sweet reunion with the kids.
Love and prayers, Stephanie
Scott,
Just read your post mid-day Wednesday and would like to comment on the difference between self-pity and grief. Why wallow in self-pity when you can decide to acknowledge your feelings of grief, own them, and take responsibility for what you will do next? Fortunately, you truly “gave yourself a break” by choosing not to self-pity anymore.
I commend you for deciding to walk when foiled by the Tube and to enjoy another walk later to consciously appreciate where you are living now. Mary Elizabeth came to enjoy it with you. You can still share that with her as time permits in the form of pictures, either word or photographic.
Praying for you and your wife during this transformational time you are in.
Another amazing, inspirational and humbling post from you, Scott. The impact you are having on your world of friends is unbelievable.
Scott:
Wonderful news today. Have a good trip home and the children will be so excited to have you for a few days.
Our thoughts and prayers are with you both.
John
I love how you measured your walk by the churches you passed and how just the sight of them uplifted your thoughts towards the heavens.
You are an incredible human being.
Mary Grace Roach
President NCMOTC
Dear Scott,
So glad to hear that ME is starting to respond again – although I never doubted she would.
Sometimes you’re going to bottom out. That’s part of loving and caring and feeling. Then you pull yourself together and you find a way to go on. I’m sure that was a hard walk, but what a great reward at the end!
I’m glad you’re coming home soon and hope that ME will come with you on your next trip back.
Love,
Karen
Dear Scott and MaryElizabeth, You are in my thoughts everday. you are so right when you said how we don’t realize how much love we have for one another until certain time comes to prove our love to each other. After a long day at work, I look so forward to hear the great progress in ME. I then Kiss my husband and tell him how very much I love him, and kiss and hug my children.Thank you for sharing your feelings, and for reminding me how lucky I am. Have a safe trip home, enjoy your family. Our prayers are with you.