We MUST Go to the Ellen Show

Anne reached out to Dreamweaver last October with this letter looking to fulfill her sister, Sue’s life long-dream!

“It’s Saturday morning, January 9, 2016, and I am sitting here with my coffee, crying, as I reflect on the phone conversation I had yesterday with my dear sister, Sue. It was a happy conversation, as we shared the highlights of each of our holidays.

She had all of her kids home and they had the best time, with even arrangements made with a photographer for family pictures. She talks about how they all made the meal together, everybody with their jobs, and they had ham instead of turkey and dressing, eating later in the day, so that there was no stress, rather than in years past when she tried, almost single handedly to get the meal ready for a cast of thousands. I said, “Oh, Sue, you must have felt so relaxed”, and she said, “Oh, I was, I was TOTALLY relaxed!” She told me how exciting going to the Womens’ National Championship Volleyball final games were, and that she went, even being sick as a dog with a sinus infection and terrible cough! Bill had gotten “the best seats” and “the place was just electric”. I could picture her decked out all in red and cheering like the natural born cheerleader she has been since she was just a little girl.

After we were winding down our holiday stories, she said quietly, “And I had an appointment with Dr. Murman.”

“Is that your neurologist? Your memory doctor?”

“Yes, my memory doctor,” she said.

She told me that she liked him, and that they ran more tests, and that he had said to her.

“There are changes since your last visit. You definitely have dementia. You have Alzheimers.”

I’m sure there was total silence between us, as we both cried and were unable to speak.

This was likely a truth that we both internally knew for awhile now, but her saying it out loud, and me hearing her say it out loud, felt like someone was choking me, just grabbing me around my throat, and I was unable to get my breath.

I’m not sure what I finally said, but probably something like, “Oh, Sue, this has to be so hard, and I am so sorry.” I remember her struggling to get words out, too, but saying, “Yes, it is hard, but you know, there’s lots of people who have things a lot harder than me.”

Yep, that’s my sister, Sue. Never, even during her darkest times, and there were some very dark times, do I ever remember her feeling sorry for herself… she had felt great sorrow before, great betrayal, great pain, but I never remember her ever asking, “Why me?” never thinking that she should be exempt from the pain.

How is this for timing? As I am typing this, I have Pandora playing in the background, and what song comes on but Bette Midler singing, “Did you ever know that you’re my hero, you’re everything I wish I could be, I can fly higher than an eagle, because you are the wind beneath my wings.”

Could this be a more fitting song for Sue? She certainly is my hero, and the hero of her siblings, her children, her grandchildren, her nieces and nephews, her hundreds, maybe thousands of students, who she encouraged and nurtured, and fed “MacKenzie Vitamins (M & M’s)” everyday to encourage them to take a risk and give an answer, right or wrong, just take a risk at learning. She clearly has lifted anyone who is lucky enough to be in her life to a level that they never would or could have felt without her. Indeed, she is our hero!

We continue to talk haltingly, me telling her that she had to know that I, as well as all of our family, would be with her every step of the way, in the same way, she had always been there for me, when Bill was sick, and again after he died, how she was there every time I called, and how she dropped everything whenever I told her I needed her. She said she knew that, and that she had always wanted to be there.

“I know I have the best family in the world.” Somewhere in the conversation, she said, “Dr. Murman doesn’t want me to drive anymore” and I could tell that she was crying.

Again, I struggled with a response, just saying something like, “That has to feel like such a loss. I am so sorry.”

“Yes,” she said. “I wasn’t really ready to hear that.”

I told her that as hard as that was, she had to know that there were lots of family and friends who would love nothing better than to drive her wherever she wanted to go. That just the opportunity to spend time with her would be a gift to them. She said she understood that, but still, this was really big.

She proceeded to say that there had only been one time that she was driving that she got really confused and lost, when trying to go to Fremont for her chiropractic appointment, and that when she finally got herself clear enough to find her way back home, she came into the house and she was so upset, and she started crying, and she told Bill, “I got lost. I couldn’t find my way.” My heart was, and is, breaking. I could just feel how scared she must have felt, how desperate.

All I want to do is to take my little sister in my arms and tell her that everything is going to be okay. I continued to tell her that I am here for her, and as always, in these situations, feeling so inadequate. I know from my husband Bill’s illness and death that all we can do is to be the best we can be everyday, to show up every day.

We cannot cure, we cannot change the diagnosis, but what we can and must do, is to put as much understanding, support, care, and love into each and every day; to be our best selves. It feels so inadequate, but that is what we have to give.

I remember reading several books by Henri Nouwen after Bill’s death, and a quote that I kept and return to now reads, “The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing. . .not healing, not curing. . .that is a friend who cares.”

I must remind myself of this. This is not a puzzle to be solved; it is my sister who needs my love and care.

She tells me of a binder of resources that they gave her at her appointment and that she is amazed at all of the offerings and possible services that are available. She says she hasn’t had much time to go through it, but she is clearly impressed.

I remind her that this is the kind of work that Jane, Bill’s sister, who Sue adores, has been doing for decades. I tell her that she is a social worker who specializes in working with people diagnosed with Alzheimers. I tell her that Jane and I talk almost every Sunday and that she always asks about her.

“She does, she asks about me?”

“Oh, yes, she does, Sue. She loves you, and she has told me to tell you that she will do anything she can to support you. You guys can talk on the phone, or text, or e-mail. If you feel afraid, and need someone to talk to, if you have questions, or if Bill has questions, she can serve as your own personal social worker.”

“My own personal social worker! Now think of that, not only do I have the best family in the world, I now have the best social worker in the world! How lucky am I!” Indeed, Sue, how lucky are you to believe “how lucky you are!”

Toward the end of the conversation, Sue said that I was the only person that she had told at this time, outside of Bill, of course, and Amy, her daughter, who would be telling her brothers. She said she was still taking this all in and that she wasn’t ready for those conversations. I understand. I will keep her confidence. She must find her own time and way, and yet, I ache to help her with this, with everything that she is facing.

After we hang up, I just sit and cry and cry. I realize that I haven’t cried this hard and this long since Bill’s death. I have not felt this great of pain for many years.

So, it seems that the universe is talking to me. The song that has just come on Pandora is Bette Midler again, this time, “The Rose”. This is Sue’s song, this is the song she would always sing on her karaoke machine, and she sang it so beautifully. The karaoke machine which had a rating device for performances, gave her a PERFECT 10 on this song! A PERFECT 10! Of course, it did. Because not only must even that machine have responded to her beautiful voice, but to the spirit with which she sang it. A spirit that even a machine cannot fail to acknowledge. I can hear her singing it.

Yes, this is Sue’s song:
Some say love, it is a river that drowns the tender reed
Some say love, it is a razor that leaves your soul to bleed
Some say love, it is a hunger an endless aching need
I say love, it is a flower, and you, it’s only seed.

It’s the heart, afraid of breaking that never learns to dance
It’s the dream, afraid of waking that never takes the chance
It’s the one who won’t be taken who cannot seem to give
And the soul, afraid of dying that never learns to live.

When the night has been too lonely and the road has been too long
And you think that love is only for the lucky and the strong
Just remember in the winter far beneath the bitter snow
Lies the seed that with the sun’s love, in the spring becomes the rose

The lyrics truly reflect Sue’s beliefs. The lyrics are how she lives her life. There are always better days to come, and you are the seed to plant for those better days.

While I am still crying, following our phone conversation, my IPAD pings, alerting me that I have a text message. I look at it beside me and smile. It’s Sue, with a message, “Love you to the moon and back, sis”. I immediately text, “Back at you, sis! I couldn’t love you more!” The next message comes soon, “To get my dose of laughter every day, I watch The Ellen Show – so, so funny!” I smile and text back, “I agree! The only person I know who is funnier than Ellen is YOU!” “No way”, she responds.

That all happened yesterday. This morning I wake up, walk into the kitchen, and say out loud,
”We MUST Go to the ELLEN SHOW!” I don’t know how, and I don’t know when, but I can guarantee you this, dear sis, we are going! WE ARE GOING to the Ellen Show!!!!!!!!!!!!!!!!!!!!!!”