Hello to everyone, particularly those of you who may have wondered where I’ve been these past couple of months; the answer is simultaneously too convoluted to explain and yet too familiar to most of us.
I have been holding myself (and everyone else in my family) together by “doing it all”, “keeping on keeping on”, etc. all while continuing my highly demanding full-time teaching. The semester is over now (still have grading to do) but I am now at that point of beginning to let the shell crack open to release the things I can let go of. It’s been a good long while.
In looking back through my posts I see the last two I started (one in October and another at Thanksgiving) were never posted. In retrospect I certainly see why! October was beginning Paul’s real downhill slide as they dithered what to do and how to treat him. By Thanksgiving he’d been given some chemo (which was helping with the pain and did not seem to have any usual side effects for him). But Thanksgiving here was where my own personal coping skills meant I had only enough left to take the advice to “do that which is before you.”
So in the midst of a really book-heavy and time-demanding semester of classes, we began to prepare for the entire family to come here and stay over Thanksgiving. Eighteen people to sleep in the house and four others joined us for dinner for a total of 22. Thankfully, Paul’s family are used to this and did (literally) ALL the cooking, but I am a very private person who comes from a small family and the influx of crowds (some of whom are quite loud) was overwhelming to say the least.
Naturally, I also had to do schoolwork at this time, correcting large formal essays, etc. In any event, we survived and Paul was so happy to have them here, some from the other side of the world.
Of course the farewell time was tragic and poignant, and they are so sweet and kind with me and with my sons, but the clear fact is that this particular group of people will never be in the same place ever again.
Following Thanksgiving comes the end of school, which (contrary to popular belief) is more work for faculty than for students. One true year-end highlight is that my son who is studying opera auditioned for and won the Tenor Solo that begins “Messiah” at Grace Church here in Rutland; it was his first paid solo professional job.
Can’t figure out how to rotate this image, but obviously it’s a vertical . . .
Paul was Cameron’s first private music instructor in both voice and piano – it was a soggy happy family there in the congregation as Cameron sailed through.
This semester is clearly Paul’s last, and there was a final recital of his two ensemble groups (a guitar ensemble and early wind ensemble, both of with he founded) that was followed by a reception in his honor. He performed as well as he could (having lost a lot of strength in the last month) and was overcome by the outpouring of affection and emotion from those in attendance – some 130 people, which is a high water mark for a performance crowd at Green Mountain College. One wants to be “high” after a time like that but for him the loss of camaraderie among peers and the loss of position as a respected musician and professor is overwhelming.
Yesterday he was told there would be no more chemo and probably only several more blood transfusions because his blood counts aren’t bouncing back up enough for the chemo to work. The oncologist said six months at most. He cries and sobs, sleeps most of the time he can, and is unable to do things he could do easily just a month or two ago.
Having done terminal care before, I had been saying to people who ask how long I thought he had that I expected we’d see Christmas, our third Anniversary (January 12th), my birthday (February 22nd) but perhaps not his 56th birthday on April 16th. Yet my knowing something theoretically and in the abstract is a bit different that him being flat out told he has less than six months.
One very important thing I have done for myself is to gain permission to teach one less course next semester, and have a two-day work week. It was difficult to do this (particularly during an ongoing promotion review) but since I knew what difficulties I was having even now, realizing what the next few months will bring made it a necessity.
On another note, he now has no income whatsoever despite having been granted disability. How many of us know that disability payments don’t begin until FIVE MONTHS after they are approved? It’s like they’ve figured out the exact time frame that allows the government to keep money you’ve paid “on reserve” and not giving it to you while you are actively dying. How demoralizing – if I enter into some kind of a more public life in the future it will certainly become a cause celebre for me!
So that’s what it’s like here in beautiful Vermont, and why you haven’t seen/heard much from me these two months. I do hope others’ holidays have been and will be pleasant times with family, friends and caring.
Hi Jennifer:
It is so nice to see you posting but so sad to hear the progress of your husband. My heart breaks for you.
I am so happy for your son’s first professional gig.
My thoughts and prayers are with you and your family. I wish you a very Merry Christmas.
Hugs:o)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
“If you don’t like something change it, if you can’t change it, change the way you think about it.”
Thank you Jane – and likewise my wishes to you and yours for a very Merry Christmas.
Jennifer, this is heart-breaking. Being told the time allotted is so…final. Makes it so real. I do hope that you will be able to share some special times in the coming months. My heart goes out to you.
Congratulations to your son for his (and Paul’s)achievement.
Kristin, thanks for your well-wishes. Indeed, the “pronouncement” is difficult to acknowledge; having been through terminal care before I was pretty sure where we were, but having Paul be the one who was told directly (I was at work that day) seemed mightily unfair.
We do share our happiness in our family – for a man who did not want to have children in life, he certainly ended up with 3 loving sons.
Best to you and yours for the holidays.
Jennifer
Hi Jennifer–It is sooo good to hear from you. I think of you and hope you are managing okay. It’s so much, from so many standpoints. I, too, send congrats to your son. I love the photo.
I can only imagine how beautiful the service and how proud the mom.
The six months… I am so sorry. The decline and the despondency… It’s a melody no one wants to play. I am so glad you are scaling back next semester–a really good decision.
How can we best support you? What do you need from us?
Denise, hi:
It IS always good to know that I will be welcomed back when I have to be on 100% output for work, home, family – because all of us have those “maxed-out” times.
I hope to be able to post at least the audio of Cameron’s work on Youtube when he gets the recording back, and will pop in that link when I am able. Proud parents, and both of Cam’s brothers were also there.
Each day it seems a bit more is lost, and I find myself being a “cheerleader” in ways I’d never anticipated. You ask what support I need – just being here is it. I plan to put up a new post in a few minutes that might shed some light on that, but please just know how important it is to know we’re all giving care to each other right here in this space!
Best to you for holiday warmth, health, happiness and prosperity.
Jennifer
Hi Jennifer,
I have missed seeing you.
I am so so sorry. I can’t imagine the wondering for both of you. Paul is so blessed to have you right there next to him. You are both such a strong couple and part of that strength will lean on the other.
I’m relieved for you about one less course and a shorter work week. That’s such a good thing.
I wish I had words that could help you feel better if only for a few minutes – but please know I’m thinking of each of you.
Sending a hug to you today Jennifer.
Bette, hi:
Thank you for your support, as always – and have a blessed holiday season with your family!
Jennifer