“And So It Goes”

Kurt Vonnegut is the author of the modern-day literary classic “Slaughterhouse-Five.” His 14 novels can be summarized as a blend of science fiction, satire and dark comedy. A biography about Kurt titled “And So It Goes” describes him as someone who made friends easily, yet always felt lonely – as someone who sold millions of books, but never felt appreciated — as someone who styled himself as a humanist, but fought with humanity at large.

My name is Jeff. I am 57. I live in Los Angeles. I was diagnosed with primary progressive MS in October 2012. I now use a walker, and I am prone to falling. My brother recently purchased an emergency alert button for me to use if I fall and cannot get up. I am sensitive to the heat, which exhausts me. I no longer work. My speech is very halting and as a result, it is difficult for me to hold a conversation as people often feel uncomfortable interacting with me.  I miss not being able to talk to people. I no longer have the opportunity to socialize and shoot billiards and pool and converse with people about sports and movies and their lives. I used to easily make new acquaintances. Now I get excited when I get a knock on the door. I used to be very independent. Now I am dependent on others.

Staying motivated is a problem. My day is comprised of doing my best to keep my place clean, watching TV on my phone, checking email, and seeing what is going on in the world on my computer. A visit from my dear brother brings with it my mail, which I sift through to determine what is important and what is not, bringing a sense of accomplishment (even if it is difficult for me to read mail).

The title of this blog was my email signature for several years. It reflects a summary of the mindset of Kurt Vonnegut. Like Kurt, I used to make friends easily, yet felt under-appreciated. It is a melancholy statement reflecting the emotional state I have been in during much of my MS journey.

Yes, MS sucks.

But I have what I have. I have accepted that. I now want to live in a world of hopefulness, not sadness. Finding a cure for MS is not about me. It is about the next generation. Hopefully, for some person not yet alive, a cure will be found.

MS has become a life definition for me. It helps me be where I am right now. It is something I have to deal with no matter what it sends my way. Since my diagnosis with MS and throughout the resulting disease progression, I have had to learn to live with humility. I have learned to live with and accept MS.

I participate in the National MS Society’s MSFriends® program. I have weekly calls with the MSFriends® volunteer that the Society connected me with. I have always been very mindful of my need to speak with people, and now it is even more important. It is important for me to keep talking with someone living in the same situation who has found their own path through it. It can be easy to feel deflated, but talking with someone on a regular basis living with the same condition who can make suggestions from their own experience about how to manage the condition helps me so much. These conversations give me a hope for life I did not have before.

To my brother, words are not sufficient to describe my thanks for all the things you do for me, many without asking. I would like for you to get through a week without worrying about me, but my situation is what it is. You are appreciated more than I can say.

Lessons from the life of Kurt Vonnegut are instructional for living with MS. It can be lonely at times living in a world which no one in your friendship circle inhabits. Your limitations can lead to feelings of being underappreciated for who you are. Unlike Kurt, though, your fight is not with humanity, but with the journey of MS. To others living with MS, no matter your situation, accept what the lottery of life has given you. I have.

And so it goes.