I haven’t really written about my MS in a while. It’s kind of been stagnant, in a good way. Little moments and symptoms here and there that I just push through until they are over, and I move on.
One of the bigger things that has happened since I last wrote is that we lost Shawn. He decided to end his life with Death with Dignity. Because his death sparked some controversy, I didn’t really want to discuss him just yet. I'm just not 'there'.
I have plenty to say about the man, but I didn’t want how he died to be the source of controversy or debate on here. It's so peripheral to me. How he lived was the point. T. Shawn Kuster was an inspiration. But then his life and his absence are so huge that I don't even know how to approach talking about that aspect either. Honestly, if last night never happened, I wouldn’t be discussing my friend at all. But some things we don't choose. Some things, like timing and love and parents just aren't ours to choose. Hence, I didn't choose when to write about Shawn, he and timing chose me.
Shawn was a rare and beautiful bird. As the MS slowly began to wreak havoc on his body, it began to take his legs. It was slow at first, but deliberate and hurtful nonetheless. But Shawn simply carried on with his life. He jumped out of airplanes, made plans for opening an MS hospital in South Africa. He wrote some books, and carried on with his life in Switzerland.
Besides all the wonderful things this man has done, the one GREAT thing that really sticks with me as a human who happens to have MS is that Shawn never complained. He was sassy and feisty and funny, but he would be serious when he needed to be. He walked a perfect line between talking about some rather scary, icky issues openly, and being funny at the same time. I think he understood that for his friends, some things were hard to talk about, and yet they needed to be addressed. His humor was his way of walking his friends through it. And he never, ever complained. He had to face some really over-the-top heavy things, and he smiled through it all.
One of those issues was a doozy of an issue-his right to die with dignity. Shawn was adamant that if he reached a point in his MS where he couldn’t feed himself or wipe his own ass (his words, not mine) he deserved the choice to die with dignity. It was a right that he fought for and won in Switzerland.When you are granted the right to die with dignity, you are given a cocktail of drugs to take when you decide. He's had the cocktail by his bedside for months.
A burden was lifted when he procured the right to death with dignity. The relief from knowing he wouldn't be stuck in his body, trapped in a bed, was a huge relief. And strangely enough, it changed the way he lived. He was lighter again; like the world had been lifted off his shoulders. He started to dream again, to make plans. He was happier. Knowing that he had this ‘cocktail’ of choice altered the quality of his life for the better.It's almost like it slowed the progression of his disease...for a little while at least.
About 3 Fridays ago I pulled over as I was driving to Target. I had this feeling, this urgency to write Shawn. I pulled over to write him that he was on my heart, and that I was thinking of him and always praying for him. “I hope you feel it my friend” were my last words to him. I knew from my friend, who was very close to him, that the MS was moving quickly now. He could barely move a finger or swallow.
We knew that Shawn was now walking the line between taking the medicine too soon-what if he got better?-and too late, you must be able to administer the medicine yourself and to swallow on your own.
I sent him the inbox and went on my way. Zoe and I said a prayer for him as we drove. When I got home, I received the message that he was gone. It was like I felt it. My friend Sherri had a similar moment like I did that day. Another friend sat outside, looking at the sky and had a feeling that he was gone. I believe that we all felt him as he was leaving.
I called my friend who was close to him and told her. We cried for about two hours together on the phone and then hung up to go through whatever it is we need to go through as humans when we realize a soul we loved and knew departed.
I cried a lot. I looked at things I usually miss, like the sky and dandelions; a beautiful stone that looked so distinctly different and polished from the others. I picked it up and handed it to my son who always notices things like these at just three years-old. I looked at everything, closely, in a new light and thought, “Shawn.”
Slowly I began to stop weeping and move to the next phase-that phase where you rejoice that someone is now free and resting eternally. He’s no longer in pain. He isn’t trapped. I think of him and pray for him often.
And then something happened last night. My rather unremarkable (in a good way) MS adventures took a turn for the worse. I had a really good day. I remember taking notice of how I wasn’t walking funny, no noticeable limp. But at 9 PM I started to get a pain in my lower right abdomen. It would contract and come in waves. It felt like kidney stones, but it was in the front of my body. If I leaned over something I could get through them.
But the scary part was that whatever was happening was setting off electrical fireworks through my legs. It was a combination of numbness and sparks that I’ve never felt. At one point I had to stop leaning over the counter to get through my latest ‘contraction’ on the floor. My legs could no longer hold me. I had a moment of pure, concentrated maxed-out panic. I looked up at Tony and said through the tears, “Shit, I think this is it. I can handle the pain, but what if this is the last moment where I have my legs? What if this it?”
This may be one of those moments that changes everything. T helped me to our room. Later, I was lying next to him in bed and I said, “Shawn.” Suddenly, Shawn was a wave that came over me. Shawn.
“Shawn jumped out of planes with no legs. Shawn had to decide whether to live trapped in a body, in a bed, in a room at some hospice place in Switzerland. Shawn lived with no legs and then some. He was happy. He wouldn’t freak out like I’m freaking out right now.”It was like he was next to me, holding me and slapping me at the same time-get a hold of yourself Jamie.
I lie in bed thinking of him and the more I thought about him, the more I let go of my fear. The more I let go of the fear, the more the pain subsided. Shawn walked me through it. He lost his legs in this life, but at the moment my fear turned to praise because he was walking me through this. Shawn walks with me now. He holds my hand. He lifts me up.Maybe this is the next phase. When you fully know that someone is with you, that they are in you and part of you, beside you and under you.
Praise be to God for such a gift. Shawn is with me. He's a part of me, and he's walking. I know it, I feel it. He walked with me last night.
I just love you. You always find the good. I'm so glad you have a connection with all the wonderful spirits in the world. Your grandpa, Shawn... everyone. xoxo
Posted by: Cindy | 09/20/2012 at 01:33 PM
Brava, Tripper. Brava. Xoxo
Posted by: CDubs | 09/20/2012 at 04:51 PM
Beautiful. Thinking of you often and more.
Posted by: Ronny Bohrer | 09/20/2012 at 04:57 PM
Thank you.
Posted by: Atheana | 09/21/2012 at 12:00 AM
Jamie this is a beautiful tribute to Shawn. I haven't written about him. I haven't been able to. You have done a fine job here!
I hope that your legs are better today, and if not today, then very very soon.
Posted by: sherri | 09/21/2012 at 07:52 AM
Simply BEAUTIFUL!!!
Posted by: Debbie | 09/21/2012 at 08:41 AM
Jamie, you are touching many hearts with your honesty and open account of your experience. I hope that your legs will soon be back to what you perceive as normal. I am sorry for the pain..... much love... Non
Posted by: Non | 09/21/2012 at 04:11 PM
What a beautiful post about a man that left all of us with much to aspire to. I hope your pain passed and your mobility returned. Its a strange way to live fearing all this if's and when's but as Shawn showed us it doesn't need to cancel out the joy life has to offer. I guess the trick is to move through the fear so you can make room for humor, joy, and strength.
Kim Latour
Posted by: Kimcooper27 | 09/26/2012 at 09:08 AM
Shawn was a 'contact' friend, we had never met face to face, but we spoke such a lot, Skype, phone, e-mail whatever. We shared the same dreams of hospitals/respite centres/MS centres in South Africa. We were frustrated at the same things, sometimes even came to blows about things we could not find common ground for. We were always amazed at the politics one had to endure for doing good. Could people not just leave us alone to do good? Shawn was such a private person. We never spoke about our MS. There wasn't time. Too much to do. I shall miss you, my friend. I understand a lot of things now.
Posted by: Madelein | 10/22/2012 at 04:10 AM
Madelein it is so nice to make your acquaintence....I had a similar relationship with Shaw. The beauty of knowing him, besides getting to know such a special person, is I am getting to meet his friends, who are equally as special...thanks for the message, God bless u my friend xoxo
Posted by: Jamie | 10/30/2012 at 01:32 PM