Thursday, March 26, 2009

Remembering Those Who Are Gone

I keep hearing songs that remind me of my dad. "Bad, Bad Leroy Brown" by Jim Croce was the first. I smiled when I heard it, remembering Dad in our house in California, dancing around the living room with a drink in one hand and a cigarette in the other. In those days, he had a curly Afro and a mustache kind of like Jim Croce.

I keep passing his name in my email and cell phone address/phone books and remembering that he is gone. I miss him but I
know, without a shadow of a doubt, that he is in a better place. I watched him in the days and hours leading up to his death and it wasn't pretty. I know how much pain he was in. I know how much effort it took to breathe in and out at the end. I know he left this earth because his body gave out and he wouldn't want to be here anymore like he was at the end.

In some ways, the harder loss in my daily life is the breakup with Ken. We broke up a couple of weeks before my dad died because he didn't want to make a commitment. I got to a place, after 3 1/2 years, where I was ready to move forward. He decided that he was not in the same place and wasn't sure he would ever get there. I would like to be angry, but I'm mostly just sad.

Unlike the passing of my father, this loss was and still is complicated and I'm not totally at peace with it. This was Ken's choice. The rejection added to the loss is like salt poured onto a very deep cut. It would be nice to say I'm handling it with grace and dignity, but that wouldn't be completely true. I haven't drank, smoked, or taken a recreational drug, but I found some other fun ways to act out for a the weeks since my dad died. I'm writing a couple essays under a pseudonym right now about some of that behavior.

I decided yesterday that I had to "unfriend" Ken and his family on Facebook because I was not ready to be his friend in real life. I don't know how to see his face and read his updates and
not have unreasonable expectations. No matter how much I want it to be true, Ken's not going to see a post on his daughter's profile page and think, "Wow, Julie is so awesome. What have I done? I love her madly and I must do whatever possible to be with her forever and ever!"

I didn't put the break up stuff on here before (which is why I put it on my other blog)--I think because it would make it too real. I'm ready to this grieving process going so here you go.

I had a dream last night that began in Ken's house. I was knocking on his son's door to give him a hug goodbye. In the dream, Matt was taller and bigger than the last time I saw him, like he had been through puberty and I had missed it. I thought I would be a mother figure in his life when that happened but now I won't be. Then I knocked on his daughter's door to say goodbye to her. I think I got teary as I gave Ally a hug. As I started to leave the house, Ken approached me with a box filled with my things. There were all kinds of stuff in there that he doesn't even have in real life, like clothes, books, and Zane's baby toys. As he handed me the box, I saw he was wearing a ring. It was on his wedding band finger and it was a turquoise heart ring. He had obviously committed to someone other than me.

The dream went on with buses and trains and other people, including one hysterical scene where Christina was on a train with me complaining about how filthy it was. I got off a stop too soon and had to run to catch the train at the next stop because I was afraid she would get lost.

According to dream analysis by the amateur team of my friend Nancy and me, the dream was about missing Ken and his children and the possibility of becoming a family together. I think the box was about the fact that I gave him everything, my whole heart, and he gave it back and said he didn't want it...or me. And then, when he was able to commit, it was not to me. It was very, very sad. I think the whole train stuff was about moving on, or trying to, and that was very sad. And I was moving on...or trying to and having trouble but I had friends there to help me.

So, suffice it to say that I am kind of in a shit storm these days but I have to believe that it means there is gorgeous weather on the other side. My friend Theresa shared a wonderful story with me:

One day the only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming.

Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out,

"God! How could you do this to me?"

Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! "How did you know I was here?" asked the weary man of his rescuers. We saw your smoke signal," they replied.

I am in the hut and it's burning but the rescue ship is on its way. I hope they have snacks.

Friday, March 20, 2009

MS and I are Alive and Well

I haven't written anything in a while about Multiple Sclerosis--humorous or otherwise. Here's a mini wrap up of how the disease is doing--in me and the world.

  • MS is running scared now. President Obama reversed the insane ban on embryonic stem cell research and the war on science is over. Listen to this NPR Story for more info. Maybe I won't have to travel as far for a stem cell vacation. It seems that even people way closer to the center than I am who use words like "unborn" to describe fetal tissue, understand that millions of living, breathing human beings will benefit from this important research. Check it out.
  • Montel Williams appeared on the Oprah Winfrey Show to talk about living with MS. While I thought it was very important to bring MS to such a public forum, I objected to the description of MS as a "life-threatening" neurological disease. I felt incredibly grateful when I heard about Montel's constant pain. I would NEVER trade my visual impairment for pain. Check it out for yourself.
  • The BBC has been covering a story about a woman with Multiple Sclerosis. Apparently, she brought a case in the British courts that would enable her and her husband to travel to Switzerland to commit suicide. I'll let you hear it straight from the woman's mouth. Here's a link to the video. I do not live in this woman's body nor do I have the knowledge to comment medically on her case but, I resent MS being moved into the category of diseases that are so horrible that people would rather die than live with them. These kinds of stories are why, when I tell people I have MS, they say stupid stuff like "Oh no. What are you going to do? What about your kids?" or tell me about their aunt her "died" of MS 20 years ago.
  • I've heard a lot of talk about MS meds that will not require an injection. When searching for updated news today, I found this story about buckeyball technology used to create new meds. Interesting although I strongly object to the characterization of MS as a disease that slowly paralyzes and then kills. I also found a company in Berkeley, California that has filed for a patent for oral MS meds. So...what's next? What comes between patent and production/sale? Big Pharma may not be angelic but they are the ones with the money to make a difference. Merck is funding new research, too. Hope their merger doesn't slow it down.
  • There are also research going on to reverse nerve damage caused by MS. A drug used to fight Leukemia is showing promising results.
  • March is Multiple Sclerosis Awareness Month. There are many different activities going on, including education, events, and activities. If you are looking for a way to raise awareness and money, I would be happy to provide you with an opportunity to do so. I have formed a team -- Team Lazy -- to participate in the Boston MS Walk on April 5. Join the team or make a donation.
Happy 1st day of Spring!

Monday, March 09, 2009

Rest in Peace, Dad

My father died at 3:45pm on Friday, March 6.

I'm so grateful that I said everything I needed to say to him when he was alive and conscious during the years before his death. I repeated all the stuff I thought was really important when he was no longer conscious and dying at the Sarasota Hospice House.

It was a horrible death. He suffered for each breath during his final week. He was less than 100 lbs. and not able to do anything, even open his eyes at the end. It was painful and even the high doses of morphine couldn't totally relieve his pain until he finally took his last breath and slipped out of his body.

But he is no longer in the ravaged body of a man with emphysema. I want to imagine him breathing big deep breaths and smiling in heaven with Goober, Luke I, and all his other dog friends that died over the years. He is sailing and hunting and fishing and being outside. He is telling stories and smiling at those he loves. He has a head full of curly black hair again and he is showing off with push-ups with a clap in the middle like he used to do in the driveway when I was a little kid. He has started a Craigslist in heaven so he can keep making deals and getting bargains. He is at peace.

I think I am, too...with his passing, that is. I miss him but I know that he is in a better place. That does not mean, however, that I am not a little nuts right now.

I am bruised and wounded by my family's craziness while he was dying. I'm horrified by my ability to pull the dead dad card whenever I want to say or do something inappropriate. I am sad that, for all intents and purposes, I am now an orphan. I am guilty and a little mad that everyone won't agree because my mother is still breathing. I am determined to work through all these feelings and try not to get sick. I want to be kind and gentle with myself and not abuse my body, mind, and spirit with old patterns and escapes. I want to be with my feelings without being filled with self pity.

I'll let you know how it goes.

Wednesday, March 04, 2009

My Dad is Dying

I'm in Florida...again, sitting by my dad's bedside in a hospice house, waiting for him to die.

On February 14, I arrived to visit my dad and have fun in the sun with the kids during their February vacation. It was a good visit. I was surprised by how skinny Dad was and how much his wife drank, but it was a good visit. We talked a lot and "Grampy Baker" chauffered the kids and me to the beach every day. When I returned to Boston on 2/20, my dad had a cold but was still very much awake and alive. We discussed Obama's stimulus package and the sour grape Republicans who semed to be obstructing change just because they didn't win in November.

A couple days later, I got a call from my sister saying that my dad's cold got worse and he had been hospitalized with double pneumonia. Apparently, he was conscious then and reluctantly told his primary care doctor that he would be willing to be intubated if need be. And, of course, that's the way it went. The oxygen mask wasn't doing it, he kept trying to rip it off and, when Linda went to the bathroom, she came back and he had been intubated.

I was shocked to learn that, although he had been diagnosed with emphysema/COPD several years earlier, he did not have an advanced directive, a living will, or had not even dicussed his wishes with Linda, his wife.

Much to everyone's surprise, the ICU was able to excubate Dad and put him back on just the oxygen tubes in his nose. But he never fully regained consciousness. They don't know if he had brain damage as the result of lack of oxygen to the brain or if he suffered a stroke. Either way, his eyes were open on and off and he was moaning but he was no longer able to focus on anyone, communicate, or even respond.

We switched him to hospice status on Wednesday but we chose to do it at the still in the hospital. Discovered today that the nurses weren't automatically giving his morphine. He's being moved to a Hospice House outside the hospital now. May he rest in peace soon. I told him he didn't start out that way but he is a very good dad and I love him very much. I've told him everything. Now we wait...