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The promise of a life lived well

4 Aug

Jack was already asleep when his mom took her last breath. I left hospice to wake him up and tell him, and although I had already explained to him that this was going to happen he was shocked by the news and was struggling to shake off the deep sleep he was in moments earlier. As we drove to see Kim I explained to him that he would see a lot of different emotions from the people there. Some people might by crying because they are sad, some may be laughing because they were telling fun stories that helped them remember her, some may look relieved, and others angry – but all of those reactions are ok, and any emotions he felt were ok too. I told him there was no right way or wrong way to do this.

Before Jack and I got to Kim’s room I sent someone ahead to gather all the friends and family back to her bedside with the direction to follow my lead even though at that point I really had no idea what I was doing. I felt the weight of this big parenting moment, and regretted that with so much time to prepare I still did not know what to do next and then I remembered my own advice, “there is no right way or wrong way to do this” and the advice of a dear friend, “follow your gut.”

I told Jack that mom’s body had died and that after the body dies we all put one hand on her and take time to reflect on all the things that we get to take with us. Everyone put a hand on Kim’s body and Jack did the same as I told him to think about what he would remember about her, how he would feel when he saw things that reminded him of her, and to fill his heart with how much she loved him. I told him that when each person was ready to say goodbye they would remove their hand from her body and now it was up to him to decide when he was ready. I whispered to him that he could stay there as long as he wanted but that when he was ready to say goodbye to her body he should remove his hand. His eyes scanned the room as, one by one, hands left Kim and each time they did, he looked at the person to soak in the emotions in their faces and their body language. He turned his face away for a time to seek a shred of privacy and then he very purposefully removed his hand. I told him it was a tradition that as the youngest person in the room he would receive a hug from everyone else who was present and he went around the room and gave a deep hug to each person. I moved to his side and put my hand on the back of his neck and asked him if there was anything else he felt he wanted to do before he said goodbye. He thought for a moment and said, “No. I think we should do something fun now like watch a movie or play I spy for things that are purple.”

Know that Jack is talking about how he feels, asking questions and that he is emotionally strong and whole. Jack is going to be ok.

Since that night I have watched Kim’s friends and family come to grips with the reality of this moment, reach for ways to touch Kim through pictures, symbols, and stories, and comfort each other with long, deep hugs. I have witnessed the purposeful breaths and release of tension and emotion. They all, in their own way, said goodbye to Kim’s physical form and collected the memories and lessons learned to keep close as they moved forward. Now it is time to do something fun.

The wisdom of Kim’s Journey with ALS comes down to this I think: the motivation for nearly every decision we make in our lives can be boiled down to either avoiding what we fear or pursuing what brings us joy. One path is filled with worry and regret, and while the other does not always work out the way we want it to, it holds the promise of a life lived well.

This is my last blog entry. Kim’s Journey with ALS has ended and I am ready to embrace what life has in store for us next. Thank you for reading and sharing this story. Wherever you are and whatever your own journey has in store for you I hope you find peace and joy. If peace and joy are within your grasp I hope you find the courage to embrace them both without delay.

Don’t postpone joy.

Hospice

13 Jul

1595 days ago Kim showed me the uncontrollable twitch on her left hand. She told me that there were symptoms before then – that in retrospect she may have experienced her ALS for even as long as a year already by the time she she showed me the twitch – but for me, it was when it all started. She was missing keystrokes when she typed, dropping coffee mugs, tripping slightly as her foot dragged just a little bit on the floor. We knew there was a problem but we did not see the storm clouds ahead. 1595 days of ALS is like trying to comprehend how much money is a trillion dollars. Cognitively we know what the word means and we can do the math but it is very hard to truly understand it. Describing 1595 days of ALS is beyond any words I could muster so I won’t even try to explain it.

There are not many days left now. Over the past month Kim experienced a steep decline in her ability to breathe and her overall health reached the point where we are no longer able to give her the medical support she needs to be comfortable at home. We transferred her to a hospice home and today Kim is comfortably resting and surrounded by people who love her. She is not communicating much anymore but in the last week that she was talking she kept prompting me to tell people stories about her life. I talked about how she took a year off of work to camp and hike out west, being kissed by Ben Affleck (after he introduced her as his wife), attending the White House Christmas party, working for Hillary Clinton, meeting Bill Clinton and Ted Kennedy and members of the Supreme Court. So I spoke for her and she beamed at watching someone hear about her adventures for the first time. Many of you reading this now have been a part of at least one of her stories already and some of you are a part of the story she is living right now,

A long time ago, long before we ever could have imagined we would end up living in Arkansas, Kim and I were talking about the future. I had an opportunity to be a Provost at a large urban community college and Kim was trying to figure out her next career move. Kim began to talk about a life with meaning, a life that made a difference. She told me she did not know how to do that but she wanted a, “big, big life!” — but that is not what I heard so I looked at her with a quizzical smirk and repeated back, “You want a big pig life?”

Living the Big Pig Life became our code phrase for finding meaning in our jobs and in our community. I chose an academic life and a year later I got an offer to work at the University of Arkansas – which as some of you may know, means that every day I am surrounded by symbols like these:

So Kim, who always believed in the power of signs, took this as an indication that something powerful would happen here, and it did. But the real story I want to tell is how in this college town of Big Pigs we discovered so many loving and supportive people. The meaningful life is not measured in what we accomplish or how we are recognized – it is defined by how we touch other people. How we love and our loved by others is the Big Pig life and I have felt that personally and saw that happen for Kim every day by friends, family, neighbors, coworkers, caregivers, and near strangers.

The last substantive conversation I had with Kim was about gratitude. She turned her heart towards the people in her life before she embarked on her last journey with this body. She wanted everyone to know how much she appreciated them. How much she appreciated her life.

Thank you.

 

 

 

Kim’s breathing test

22 Aug

Kim asked me to write this post. My first response was, “Do you want this to be a dry statement of the facts we learned this week, an overly positive take on our bad news or something authentic?” and when she said authentic I held her gaze for a moment and said, “really, are you sure?” so here it is.

On November 1st, 2011 we published our first blog post called A Letter to Friends where we broke the news from the worst day in the life of our family. After a year of searching for answers to explain why the healthiest person I have ever known could barely walk anymore I felt like anything the doctors said was going to be a relief, as long as they did not utter those three letters: ALS. It seemed too horrible to be real and nothing could have prepared me for that moment. As we came to grips with the diagnosis, as it became more real to us we began the process of fighting this battle. We have thrown pills, new diets, exercise, doctors, technology, prayer, laughter, love, and more than a few curse words at this disease. We have done all the things you are supposed to do, including make the regular trek to our ALS clinic in Little Rock to measure the progress of Kim’s ALS, learn how to adapt to the changes in what Kim can do, and continue the fight. We knew it was time to talk about a feeding tube because Kim would get tired from trying to eat her meals before she would be full. It was just too hard and a feeding tube could be just another piece of adaptive equipment that would give her the energy and time to do the things she really cared about.  Granted, coming to peace with that was a more arduous process then the last sentence might lead you to believe, but we arrived in Little Rock at peace with that next step.

Each time we visit the doctor the news is a little worse. ALS is relentless. However, there is always hope because even as the ability to walk, hold things, and easily talk and eat disappear – as long as her breathing was good we felt like Kim was ok. This was the litmus test, the breaking point between living with ALS and dying from ALS because in the end, it is all about whether you can keep breathing. When the breathing test equipment would roll into Kim’s patient room she would always immediately become very serious and if the technician made even the slightest mistake in administering the test she would make them do it again. Over the last year her breathing numbers (the Forced Vital Capacity Test) ranged from 89% to 94%. And while Kim was always annoyed at the B+ on her record she saw that as an overall A average and could feel good about it. She made them do the test 7 times on Monday and the best score we could get was a 56%. That is a dramatic decline, a devastating number, and there is no way to be prepared for that news. We were both shocked. In addition to the surgery next week where Kim will get a feeding tube we will also be getting what is called a non-invasive ventilator that Kim will use to help her breathe. How could something that was so real before seem so much more real now?

Kim asked the doctor for a prognosis at the end of the visit and we were told that Kim has more than 6 months, that the Dr. has been doing this for a long time and if she thought we were less than 6 months out we would be having a different conversation, and that Kim is healthy and strong, and young and all of those things work in her favor, but that with ALS – “the disease always wins in the end.”

Strikingly Kim has been in a good mood the last few days. Tired and anxious about next week, but generally happy. Today many people asked me how Kim was doing and at one point I responded, “Physically, not well. The ALS is progressing quickly and it was a hard week, but she was smiling the last time I saw her today. So if the last thing ALS takes from you is your smile that has to count as a win, right?”