I missed my self imposed deadline by a few days. I ran into delays because of visitors, which is positive, and device problems, which is very negative, because it meant that I couldn’t communicate with my family. I hope to be back to publishing every month starting in July. I bought myself two months, but June is a busy month. :-/
Many of you have told me that you find my blog posts meaningful and inspiring. It is very gratifying. I am lucky that every month many of you tell me how my writing affects you.
It’s true that the vast majority of the time, I’m grateful to be alive despite my condition. However, there are times when I feel immensely sorry for myself.
I envy everyone who can scratch their own itches. I envy everyone who can jump up and go to the bathroom alone. Basically, I envy every able bodied person.
Occasionally I have a particular resentment for the people living with ALS who are slow progressors. I started going downhill within 9 months after diagnosis. That’s when my dominant arm lost all strength. Then at 11 months, I noticed my speech was sounding garbled. I had to give up driving after I fell and broke my elbow.
I fell many, many times, including one time when I was crossing the street in downtown Seattle. I had to use a walker 18 months after diagnosis. Then I needed a wheelchair when going long distances. Oh, and my left arm had lost its strength by then. I had to resign from teaching, my calling. So, at times, I have a special resentment for people living with ALS for many years who can speak and use their hands, and are maybe in a wheelchair or maybe not.
In February of this year, I thought I was going to die soon, because I read about two women with ALS, who had died at age 56. In April I was going to turn 56. My therapist tried to convince me that that didn’t mean I was going to die, but I became very anxious. I got very anxious whenever I had to disconnect my external ventilator, for things that I previously had no problem doing, like going to the bathroom. I would hyperventilate and experience some panic. The only thing that would calm me down was closing my eyes, but most of the time my low oxygen in these circumstances made it impossible for me to close my eyes. So maddening!
Barry is awesome, and figured out how to take the ventilator with us when we did those things. He also called my neurologist to describe what was happening and to request an increase in my anti anxiety medicine, which was my idea. My doctor said we were doing all the right things, and he prescribed an increase in my anti-anxiety and a sedative. The sedative is magical. I take nowhere near the maximum dose for a day. Just half a pill stops my hyperventilating and I have no problem closing my eyes!
Recently, I found out about a group of young women who are living with ALS. They have young children or don’t get to have children, because of this terrible disease. That helps put things in perspective for me.
I’m lucky that I was able to have kids, and I was able to hold them while they were infants and toddlers. They are both young adults now. I was lucky to have so much time with my kids before I succumbed to the worst symptoms of ALS.
So I will continue to write and I’m sure much of it will be “positive” and full of gratitude for each day. However, it also feels good to keep it real now and then.
Daniel
Personally, I think you are well with-in your rights to be resentful. I hope your text to speech has been set up for long form swearing. But I also think that you’re right in searching out a balance. This whole thing is the extreme of bad luck (ALS effing sucks) and good luck (looking at Barry here), so trying to keep the scales tipped in the positive has got to be hard.
For what it’s worth, you were an inspiration before this whole thing started and you’re an inspiration now. Thanks for taking the time and putting all these thoughts down.
Janet Munger
Sending so much love your way and gratitude to still be in your circle. I was just thinking about you earlier this evening and imagining that this must be a busy and exciting time for Max, as I believe he is about to finish high school. I will send you a private note later about my absence in recent months.
Despite my lack of contact you and your fam have been in my thoughts.
Stephanie Carmel
My dear Jessie,
Your writing is so beautiful and yes, so real. You are a gift to all of us. It’s a privilege to be a part of your life. ❤️
Linda Towbin
I wish it were me and not you. Every mother would feel the same way.
On the positive side, you have your mind. Vivian didn’t. That allows you to continue to lead a life of purpose and make life better for others, which you do.
Love ❤️ Mom
Julia Chase
Dearest Jessie,
Keeping it real, whew! I have known you since the first days of your diagnosis, when you first considered moving into our neighborhood. Sandra recalls you going door-to-door to meet your new potential neighbors to make sure we were not a bunch of psychopaths. I am so thankful we passed the interviews and you and the family joined our “hood.”
Reading of the early days of your ALS brings back memories, for sure. I remember you unpacking your car after your last day of teaching. You were strong, but I saw your tears. I remember when you could eat oatmeal with raisins and brown sugar, then you decided it would be better for your body to go only with the nutritional supplement drinks. That was such a hard decision. I remember when Sandra and I could help you with meds, eating and in the bathroom, but that got too challenging and unsafe for all of us. We are not professionals. I remember helping you downsize your possessions: “keep, donate, put in boys’ bins, recycle, garbage.” You made all the decisions. That was very hard – I don’t need to say more.
And these days: we get to relish in converstaion about all kinds of topics, plan and plant your pollinator gardens (designed by you!), gather with family and friends for birthdays, Synagogue events, and graduations, look at photo albums, write political activism letters, visit with Barry, Max, your Mom Linda, and Ateka, plan outings, and tell stories. I truly admire you for “keeping it real.” Thank you for reminding us all to – Keep it Real!
With love always,
Julia
Len Podis
Dear Jessie,
Thanks so much for sharing the details of the progression of your ALS and especially your less positive thoughts and feelings about your situation. I think we all benefit from hearing the kind of unvarnished truths you reveal here. I think most people feel sorry for themselves at some point, more or less, and you clearly have good reason to do so. But your willingness to be open about it is a source of inspiration and also helps people who don’t have ALS to put things in perspective. Thank you again and again!
Best wishes
Len
Dawn K Thomas
Thank you for sharing your honesty with us. You are amazing and we love you.
Sara Esrick
You continue to be such an inspiration to me, Jessie and I really appreciate you keeping it real since that is who you are. And by keeping it real you are able to share your inner journey which helps me more deeply understand how you are feeling. Thank you. I love you. 💕
Nicki Varma
Jessie you blow my mind with the person you are. You are brilliant! Thank goodness this awful disease has left you still cognitive because the world needs your voice! Thank you Barry for being a genius! Thank you for taking care of Jessie. We do not talk often but when I get a blog post she enlightens me! Thank you Jessie for just being you-a powerful source for all who love you!
Jennifer Love
Dear Jess,
I enjoyed reading this post and learning more about ways you (like me) compare yourself with others, such as people with ALS who are slow progressors. Reading the part of your post where you mentioned falling while crossing a street in downtown Seattle reminded me of the time that you, Barry, Bryan, and I met up in Portland sometime after your diagnosis. I was pushing for us to take a walk, thinking the exercise would be good for us all. You quietly held your ground about staying more stationary. I’m so glad you did, and I apologize for not being more sensitive.
Your mention of your anxiety–about having to disconnect your external ventilator for tasks, about turning 56, etc.–keeps things very real for me, and also helps me put my own anxiety in perspective. (I have a superstitious side that extends to even not wanting to open up umbrellas indoors.) I admire that your anxiety does not seem to encompass (as mine does) social anxiety. I remember when Barry said during my last visit that you love having visitors and would be happy to see folks parading through your house all day long ( 😉 might be a slight exaggeration on my or Barry’s part). I can imagine how much more enriching your life is given that you open yourself up to frequent social activity.
I also love that your post identifies not only things that stir resentment in you, but also things you are grateful for, such as your having had two kids, and having the memories of holding them when they were young. I love and admire that you have had the experience of childbirth and child raising. I hear when you write about Ethan and Max the great fount of love you have for them.
Thank you for your post, Jess!
Love,
Jenny
Rachel Nussbaum
Hi, Jessie. “Keeping it real” is one of the things I’ve always appreciated about you. As I’ve said before, you have an AMAZING spirit: the capacity for resilience, a positive outlook so much of the time, and the ability to teach and inspire! But, it wouldn’t be honest if you didn’t acknowledge that this is a hard road too — not one you chose — and of course it’s only natural that envy, resentment, anxiety are part of the picture. Please know that I’m always happy to be a sounding board for you (and/or Barry) when you want to vent about the hard stuff.
Meanwhile, I hope the anti-anxiety meds continue to do exactly what they’re supposed to, enough that you’re able to celebrate in this graduation season (so exciting!).
Sending much much love your way, Rachel
Chris Kindem
Dearest Jessie,
Oh, my friend, I am so grateful to be able to read your blog, and be able to communicate with you through messages! Thank you for sharing all you do about your days, and about how you are doing emotionally. I am sorry that things are so hard in so very many ways! I marvel at your strong, positive spirit! I would love to come and see you sometime, if that is something that you would like, and that would work for you. You are always in my thoughts and prayers. I give thanks for our friendship, and for the friendship shared by our two dear boys! Sending you much love!