October 12, 2015
July through September flew by. I visited with family on Long Island, walked laps at the pool, worked on my second novel; all while doing my best as a mother, mother-in-law, Nana, daughter, sister, friend, and even a good neighbor.
I keep up with my CML forums about my chronic myeloid leukemia. Today a post struck me as particularly familiar. It brought back the memory of an essay I wrote when I first retired early due to CML. I’d like to share both posts with my readers. The first is Jill’s post, followed by my essay from December 2008.
The Day Jill Went to the Psychiatrist
Hi, my name is Jill (30). And I have cancer. Fortunately I have an excellent treatment option, but it is not a cure – my cancer is considered chronic and I will have it forever. Cancer is not why I had to go to the psychiatrist. I can handle my illness and the pain, discomfort and uncertainties about the future. I can also handle but struggle with the many losses that cancer has taken away from me – not to be able to work or finish my post bachelor degree. I’m no longer the wife that I was and will never be a mother. What I cannot handle are some of my friends.
On the internet I read a poem about the things that cancer cannot do; “Cancer cannot destroy friendships”. I disagree. It can and it does because cancer changes everything.
I used to be very enthusiastic and full of energy, empathy and patience. In my head I still am, but I’m now too tired and exhausted to show these traits. I’ve been through too much to be empathic about every little setback in other people’s lives. My short term memory isn’t even good enough
to remember important issues, let alone remember birthdays or what concert friends attended. My patience is limited and pain causes me to be very reclusive.
Friends come and go. The day I was diagnosed with cancer I lost friendships – I was only 25. People say “If you lose a friend because of a cancer diagnosis then they weren’t your friend in the first place.” But then I do lack to my friends. Some of my friends are great people to party with and they offer to help. However they are not very socially developed and have no idea how to be supportive. They have feelings of anxiety, distress and despair and don’t know to handle it. The easiest thing is to not do anything which is exactly what my friends did. At first I didn’t even notice when some friends no longer visited because I was busy simply surviving. Family and other friends compensated for them. I went on a holiday with people I love and was invited by a pregnant friend to witness her 20 week ultrasound, my best friend visited me on her birthday while she was very pregnant. That all meant the world for me.
I am not talking about my best friends of my family who will always be there for me and are wonderful. I am talking about my regular friends. The ones you chat with late at night, the ones who visits you unannounced and then enjoy spending the day with. When they heard I have cancer they sent a card and asked when they could visit. But after a while they forgot to ask how I was doing. They assumed I was better despite the fact that I did openly talk about treatment, my feelings and perspective. They don’t make an effort to see me or spend time with me. Let me be clear, these friends DO think about me. Maybe they want to do something fun but they have no idea what to do. I am not willing to sit back and wait for my friends who will never come. So I make an effort to rebuild the friendships I’ve lost! I convince my husband to drive me to see friends I haven’t heard from in months. I use all of my energy to visit them for an hour. I use all my patience and concentration to listen to their stories. On the way home I am exhausted but happy with the restored friendship. I won’t be able to do anything the following week due to the pain and exhaustion. By doing this, I neglect my true friendships, my family and close ones but they understand. The circle repeats…and repeats. Despite my great efforts to maintain these friendships I still never hear from them.
Then I broke and became very ill. The cancer was no longer in control and I had to take a lot of medication. I was bedridden and unable to do anything besides puking, sleeping and seeing the doctor (or the laboratory assistant/ nurse/ pharmacist/ physiotherapist/ insurance agent). For 5 months I didn’t see any of my friends. They didn’t send cards or quick text messages checking in. My body was a mess and this caused my brain to also become a mess. Why did my friends avoid me? Am I not worth the effort? Am I not fun anymore? Why do friends no longer want to spend time with me? I doubt myself and lost faith in myself. If I am not good enough for them then I am certainly not good enough for my good friends and family. My feelings were in a downward spiral and I decided to go to a psychiatrist. I told my story which seems to be very common. The psychiatrist gave me two options; confront friends about their absence or make more of an effort to spend time with them. I felt like I was the one failing. So I privately spoke with my friends and had (technical)good conversations with them. I told them I valued their friendship and enjoyed the time we spent together. I told them that I had missed them over the last couple of months. Their answers where astonishing. “They were busy and I don’t need additional obligations in my life. I don’t like being around ill people. I can’t stand people with cancer. I don’t know what to say (and then disappear for 1 year). You can’t do anything so we don’t invite you.” People were really honest with me especially after they had been drinking alcohol. Honesty is their only good characteristic. I now feel foolish, but I did try one last approach. I gave them one last chance to show me they were willing to make a small effort for our friendship. I invited them to cheer for me at an event I was participating in. It was close by and there were different days they could chose to come. And surprising roffl, tadaaa there were 0 friends. Many didn’t even respond to the invitation.
I was very disappointed for a few days and angry at them for even longer. But then I realized what you all knew when you start reading this story; this type of friend is not a true friend. They are not worth your time and it took me a long time to realize that. I am feeling much better now, mentally. After that one appointment I no longer needed my psychiatrist. My “friends” where perfectly capable to learning me that by themselves. Now I think about it, the title of this story should have been “Naive Jill learns a life lesson.”
My essay I wrote for the This I Believe website.
Entered on December 30, 2008 Age Group: 50 – 65 Themes: illness, self-knowledge
To Befriend or not to Befriend
I believe when a person becomes ill that it is ok not to have friends. Please understand, this is not a woe is me story. Let me explain. Within seven years, I went from being a healthy, vibrant, employed teacher to an unhealthy, idle, unemployed person. The latter is what formed my belief.
In August 2001, I lost my oldest son. It is this overwhelming sadness I deal with daily that was the start of my newly acquired philosophy. This loss followed my leukemia diagnosis in November 2003. Being fully aware of how friends and family are most important at such trying times, the friends component was quickly diminishing.
Between my sadness and treating a chronic illness with daily chemo, the failure of friends to empathize provided more destructive attitude than positive for me. I do not want pity friends.
I will expound my belief that it is ok not to have friends when a person becomes ill. My body is deteriorating due to osteoarthritis. In July 2007, I had an unsuccessful total knee replacement. I cannot sit, stand or walk for an extended period. I have tried going places and doing things, but I suffer beyond explanation afterwards and it is that very explanation that is impossible to express accurately to others. When I did have a life after the hours of teaching, I loved walking the Las Vegas Strip, walking the city parks, dating, going to concerts, and having a fun and active life. Currently all has changed due to my poor health, hence my choice not to have friends.
I continued to work until October 2008, during which my ailments progressed causing me to take medical leave. This has led to my early total and permanent disability retirement at age fifty-four, which has affected every aspect of my life.
Today my life is much different. I do not have to say no and make excuses to others. No one calls. No one knocks at the door. I have modified my home and life to accommodate my disabilities. I realize my belief goes against my family’s concerns and every self-help guru and book currently written about the importance of friends.
I am content and happy with my choice. I will devote my time to writing a book. I have no idea regarding its content, but it will be fiction and it will be fun. My inspiration to write came after hearing Dan Gediman on Book TV talking about the writers in the This I Believe books. This essay will be the springboard for my own writing venture and I will be successful at it, This I Believe.
Copyright © 2005-2015 This I Believe, Inc., all rights reserved.
Do you see the similarities? While I don’t and/or haven’t experienced exactly what Jill shared, I do relate to a lot. For example, her admission: “I won’t be able to do anything the following week due to the pain and exhaustion.”
Unfortunately, I have missed important events and have canceled dates with family and friends, among other things because I can’t control how I’ll feel from one day to the next. I am lucky and grateful for what I can do, and I work on improving my health on a daily basis.
I felt great reading my essay from seven years ago because I did accomplish the goal of writing a book. Sure, it took six years, but I did publish. The past year I’ve been able to do more walking and physical activities, due to a Pre-Knee Replacement surgery. Currently, I need a lap-top as typing at my desk with a PC is not working out.
It’s not easy. But this is what Living with CML is all about.
Thank you for reading. As always, comments are welcome.