Home Updates Eulogies Galleries Feedback About
#J14 (28Dec00) Roiling Seas

Back Up

Subject: WATCHED ONE #14 (28Dec00) Roiling seas
From:     Jennifer Perlman

Dear Watchers,

At times I envision you standing at disparate shores looking out over the sea for a light, a message, a sign of what is going on here. I know that we have been uncommunicative for a while. I imagine that some of you see this as a calm sea and feel relieved at no news, and in some ways this is accurate. There are no ER visits, surgeries, or imminent crises on hand. The surface of the water is relatively eventless; however underneath the tides are roiling, sea creatures are being tossed this way and that, and old wrecks are being pushed over to reveal their undersides.

The past two months have been extremely difficult for myself and also for Karl, although in different ways. My physical problems and recovery occupy much of my time and physical and emotional energy and like Roseanne Roseanadana said, it seems to be "if it's not one thing, it's another." I am doing fairly intensive and various types of rehab for my neck which has proven to be extremely prone to formation of fibrotic (hard) scar tissue. It feels like all the therapy I am doing is just keeping me from getting worse, not actually making me better. They say there comes a point when the scar tissue starts to soften of its own accord, but it seems like this point is probably at least two months away for me. In the meantime, I am very preoccupied with the possibility of losing neck mobility.

Recently, I have been having long bouts of bronchial spasm coughing (a recurrent Winter problem for me for years), leading to severe spasms in my already tight neck muscles, feelings of choking and ultimately, vomiting intermittently for an hour (fun). It can pull my trachea out of alignment and feels very traumatic for my body and me. We have talked to Andy and focused on heading off the coughing spasms before they get too bad, but I don't know if it will work. I am frightened when I begin to cough and this probably makes things worse. When
it happens I want Karl with me, although there is little he can really do, so he feels helpless and frustrated. I am afraid to be alone when it happens, but there's nothing anyone can do, and it sneaks up on me relatively quickly. I wish I had a magic healer who would appear and just sit with me and rub my back and say it will pass and be ok.

I often feel like my whole life revolves around the cancer and that feels very unbalanced, although at this stage, it is kind of appropriate. I feel alternatively very hard on myself for not doing more, and then too hard on myself for pushing before I am ready. Finding a balance is so individual I don't know who could help me. Life is feeling very lonely, both because of all the physical things that only I am going through and because I think Karl and I sent out a message after treatment was done "Yeah, Jen made it through treatment, it's all downhill from here..." In many ways I have found this time much harder than treatment where goals and timetables were clear. I hear from all my doctors that it will be months before I feel well, that it has only been a little while since I left treatment (2 months) and that I have to be patient. I am mentally picturing April, my birthday month, as a possible turning point, but I don't think change will come dramatically, so it makes it hard to see.

Envisioning a positive pain-free future feels almost impossible right now as I sit in the midst of my body. If people say that the body is a temple, then I feel mine has been massacred by my treatment and its after-effects. I am trying to use this image to think about kindly dusting off stones from the temple, figuring out where they go and gently replacing them. Temples do no magically rebuild themselves and what is rebuilt must be done with care and reverence. And the rebuilt temple is never the same temple, but can be beautiful. It is sometimes hard
because I feel so angry at my body for not doing what I want it to and for tripping me up with new and bizarre problems. Keeping a self-compassionate view is a challenge.

Soon, it will also be time for me to add some non-recovery items to my agenda, but I have to take care that they are healing activities which will bring me some pleasure but don't require too much commitment. I want to sculpt but haven't found the right way to bring that back into my life. Perhaps I will find a class, I don't know.

On top of all of the physical stuff, I have become quite depressed over the past month or so, which adds to my negative attitude, saps my energy, and is hard on Karl as his partner is not the funnest person to be around. I've been through depression before but this one feels much more based on real things in my life. Although I have good reason to be depressed with this nightmare flying from left field into my life, it is not an adaptive response if it gets in the way of my taking best care of myself. I am trying to pull my way out as best I can. Perhaps that is why I haven't written in so long -- I haven't felt I had much good to say, and I've felt like cocooning a bit. It was particularly hard during the two weeks that Karl went to the UK to see his family. My car was stolen and then recovered and the stress pushed me over the edge. Sometimes it all feels Jobian. Fortunately, it was salvageable and I will be getting my little Honda back soon.

Nevertheless, we have managed a few lovely moments here and there: going to the beach for short periods and getting out to a few movies. We are trying to be as normal as we can, although sometimes it is difficult. We thank you for all of you support. I apologize for being so out of touch and will try to remain more connected as we proceed.

Best and wishing you all wonderful holidays,


Back Up

If you have any comments or problems with this site please contact  Karl Horton
Page last updated: Monday, 05 March 2001 18:07:04 Eastern Time.