Wednesday, March 26, 2008

How to Remain Friends With Someone Who Has a Terminal Illness

At my support group Monday our facilitator provided a little insight, which was sad for me to hear, but I had to hear it to make sense of something I have not been able to make sense out of for a long time. You see, at this time last year I was seeing a lot of people. Other bunny moms, friends from the neighborhood, and friends from before, and even a bunch of people from the ALS community. So I posed this question Monday night. I said "in the first two years of ALS, I had so many friends who stopped by. We went to lunch, had tea together here, or even just went out for a walk, or just hung out here. I got emails from everybody. So many people cared, and now I hear from nobody. What happened??"

Well Toby, our facilitator said "many times, people don't want to keep up a friendship with someone they know they are only going to lose" It opened my eyes. I have gotten those "I'm sorry I haven't been around but life is so crazy" emails. Now I get nothing. From anybody. Whole entire weekends go by when I see nobody except my aide. If it weren't for my Jewish Family Services volunteer Judy, I would never get out of the apartment except for medical appointments. I9 can appreciate people being busy, but everybody?? And when I did speak to people, they mentioned going to the theater, out to dinner, parties etc. But suddenly for most of my friends and family, I don't even know what is going on in their lives. This left me with a lot of questions-- What did I do to drive everyone away? Am I that tough to look at? Are they really so so busy? I bought it for a while and waited for their crazy lives to calm down, waited for them to come around again. It never happened. All summer I barely went outside. Fall was worse, winter unbearable.

So, what Toby said, is making sense. I hung on the promises : "We'll go to the city/a museum/a movie/the beach/the park....etc." There were even people who said they were coming, and never showed. I got cards, emails, comments on my blog. They loved me, thought of me, prayed for me. So now I know the truth; they never intended to see me. I'm going to die anyway. Except I'm still here. In the meantime, other people died, people who weren't supposed to die, who weren't terminally ill, or they moved away, or got married, or had babies. So here I sit with the sad knowledge that these people are gone. Their lives are never going to "calm down", the visits won't happen, the outings won't happen. Okay, okay so I have to move on. But where?? I try to break up the monotony by playing computer games, savoring what outings I do have with Judy, the connections I make at ALS functions [where I lose people to death too]

Where do I go? What do I do? How can I meet new people? How do I go places and do things when sometimes a grumpy aide is my only companion, an aide who is into hiphop, Lifetime movies, and has her own life?? There are so many hours one can spend online, so many hours of computer games I can play. Just so many DVDs I can watch. And the little things I could use help with, use a friend's input with -- pictures I want to hang on my walls, organizing I want to do. Just to have someone to drink tea and eat cookies with, sit in the park with, etc. I am also stuck by my own inertia-- it's depression. And yet I feel lucky to still be here, even if there is still a part of me that waits now that the warm weather is here, for that friend's life to "calm down". I just don't know how to get myself to feel that I am doing something worthwhile. Toby said I shouldn't take it personally, that it's not me. But it IS me.

Anyway, I found this on a site for cancer patients. Some of it applies to me, but some doesn't [for instance, I am not going thru chemo treatments. But the message is universal

It's called "Remaining Friends With Someone Who Has a Terminal Illness" and gives tips to the person who says "what do I do/say?" If you still don't want to remain friends with me, fine. But the article might help if you have another friend or family member who has a serious illness.

Friday, March 21, 2008

Governors Gone Crazy and Tragedy for an Aide

As with everyone else in New York these days, I find myself distracted by the Governor Spitzer sex scandal, the subsequent Governor Paterson extramarital-affair gossip, and the [NJ former governor] McGreevey alleged-menage-a-trois scandal, as well as a tragedy on E.51st St., where a construction crane hit a residential building, killingg seven people. So I haven't updated everyone on my last visit to the doctor.

My blood pressure was down to 140 over 90, which is an improvement from 210 over 118, but it is still too high. Since the Benicar wasn't covered by my Medicare part D drug plan, and would have cost me $70 co-pay, she switched me to Lisinopril, and ACE-inhibitor, and told me to also take the Toprol, an alpha-blocker, again. And, she also added Crestor for the cholesterol. I've lost track of the number of pills I am taking every day. On top of this, my urine specimen showed that I had an infection, so I gt a 7-day round of Cipro. Since the Cipro pills are huge, I thought I would chew it ----- big mistake! Cipro has to be the most vile-tasting pill that ever passed my tongue. This morning was my last dose-- I hope. I managed to swallow down about 10 of the 14 doses, without having it melt on my tongue and totally gross me out. In two days, I have to give another urine sample and I PRAY that this infection is gone, because the thought of taking this medicine again, sends shivers up my spine.

My support group at Beth Israel was very emotional this week. It was Phyllis' first meeting since Stan died. She is doing the Ride for Life ad Advocacy in DC, and I have to think it will be so hard for her. Roberto's two sisters Ivette and Rachel were there Tuesday night, along with three people who lost a parent to ALS, and Susan who lost her son in August.

Another tragedy hit hard here at the beginning of the week. Gulshan, one of my aides, received a phone call from her husband's brother in India that her husband [who has been over there for several months to run a family business], was in a serious automobile accident. On Tuesday night she came to work, and was very distracted, understandably. Se said they needed to induce coma for her husband, in order to ease the swelling in his brain. She was looking forward to the next day, when they would get him out of the coma and she would be able to speak on the phone to him. Her son was already on a plane to India. Gulshan would ot be going unless he took a turn for the worst. Well, he did take a turn for the worst. Shortly after Gulshan arrived home Wednesday morning from her all-night shift, she received a call from India that her husband had passed away. She left for India where she will be for two weeks. I am so sad for her!

Wednesday, March 12, 2008

A New Earth [Outlook]

I can finally breathe a sigh of relief knowing that the Medicaid recertification went out. Now it's time to take care of me and my issues. I am loving the Oprah Winfrey/Eckhart Tolle web workshop. Considering the way I have pissed people off and driven them away, it is work I have to do for me. So far it has dealt with forgiveness and separating the self [he refers to this as the "ego"] from material possessions. One of the things that has me stuck and surrounded by my art and craft supplies and other clutter, has been my unwillingness to get rid of that part of my identity. The other factor is of course, time and energy. So last night I set to work scanning my rubber stamp and scrapbooking supplies, to list on eBay..

I have thrown out a lot of stuff, and it was painful. But I have begun to look at the process as a purge of clutter and a way to let new ideas and endeavors enter my life, which it has not been able to do for the clutter that I looked at every minute of the day in this place. A lot of my dealings with people in my life has been affected by the roles I have played in my relationships. Always the planner, the initiator and the organizer, it's been difficult for others and myself to give that up and let others do that for me. And it might be impossible for others to do for me. Ditto for the people I have chosen to be in my life. My friends and colleagues were always type A, driven, busy, and largely high-achieving. That hasn't changed for them; it had to change for me. I am going to name one of my books "Forced to Sit Still and Shut Up", because that is precisely what has happened. If it weren't for ALS, I would be doing the same thing. It was silly of me to expect that, just because I am forced to be still, that my entire social circle should do the same. I need to look for support in a place where there are other people who are able to sit still for a while as well. A fellow PALS once told me that the fact that she got ALS later in life, when her circle of friends was largely retired with grown children who were out of the house, is the reason she is not at a loss to find friends and neighbors to spend time with. It was a startling revelation to me, when this concept clicked for me.

I would love to somehow find a discussion group that I could belong to, to discuss the book and keep doing this work on an ongoing basis. Right now, I am letting myself fulfill this need online, which is fine. The chapter we are currently reading deals with the choice to look at illness as an obstacle to overcome, or as a victimization. I do both, but I need to learn to get rid of my role of "victim". Good news: my aides, when they show their Concepts ID, and are with me, can get into any UA movie for free. The Midway in Forest Hills is a UA theater. So now I don't have to pay double admission to take my aide to the movies, or wait until a friend is available to go to a movie with me!

Sunday, March 2, 2008

Mike Smith of Dave Clark Five, Dead at 64

Just when the Dave Clark Five were about to be inducted into the Rock and Roll Hall of Fame, I learned of Mike Smith's [lead singer] death at 64. My idol, Peter Noone of Herman's Hermits, has been raising money for years to get Mike the things he has needed, including a motorized wheelchair, for years. You see, Mike was paralyzed from the ribs down, in a 2003 accident. He fell off a ladder while fixing up his house in Spain, and sustained a spinal cord injury. His death was a result of pneumonia, a common complication in spinal cord injuries.

The Dave Clark Five were part of the British Invasion, started by the Beatles in 1964, and which also included my lads, Herman's Hermits. This band was so much a part of my life. The Dave Clark Five were on the Ed Sullivan Show 12 times, and I probably watched it every time [eating Chinese food of course]

Saturday, March 1, 2008

The Blood Pressure Battle Continues

The blood-pressure battle goes on. My toprol didn’t help, and my blood pressure is higher than ever. So I went back to the doctor yesterday. She switched me to Benicar, and she also added Crestor for high cholesterol.. She also gave me a two-week supply from her samples, which turned out to be a good thing because, as my aide learned when she brought the prescription to the pharmacy, my Medicare Part D will only cover 25%. That would leave a co-pay of $70. Since this is a hardship for me, the pharmacist will call the doctor on Monday to get an alternative..

On Tuesday, I got fitted for the special shoes to go with my new braces. They will be ready in two weeks. Then I am going to try to get a few physical therapy sessions to see if I can walk a few steps with them.

Monday we had our MDA support group at All Souls Church. Roberto’s two sisters were there, but Roberto’s absence was blatantly obvious. I looked over at the sofa where Stan and Phyllis always sat, and it was empty. Phyllis said she would be back after her 30-day mourning period.

On Thursday Tiegan, the social work intern from ALSA, came to visit and we talked about a project we hope to work on together before her stint is up in May. I also signed up for Oprah’s web eventm a class on “A New Earth” by Eckhart Tolle. It is about finding your life’s purpose, and over a million people from all over the world have signed up. I need to do something spiritual like this.