Blessings come in all sizes, shapes and experiences. Blessings happen all of the time… actually in every moment we are aware of being truly “present”… in every moment we allow gratitude, appreciation and love into our existence. Profound moments such as these fill the heart and soul beyond measure. This experience… this particular blessing… still permeates the air… as well as in the hearts of those who were touched… a “living blessing” that continues to BE. It was my privilege to be part of this blessing.
You see… Susan, my sweet, courageous friend of over twenty-two years, passed away from a rare form of lymphoma, called “Richter’s Transformation”, at the young age of sixty-three, Saturday night, March 28th, 2009, just before midnight. I was fortunate enough to be with her for her last breath and take her on an incredible journey that held the space for her spirit to drift into another realm… in light and in love… with soft, beautiful music playing, as if the angels themselves were singing just for her, all the while smelling the sweet scent of “rain” that was gently sprinkled into the air… reminding her senses of the sweetness of life.
This is a true love story. It is not only about Susan and her husband, Jerry, of twenty-seven years, who loved her up in ways that reflected true unconditional love until the very end. It’s a story about her women friends, whom she called her “sisters,” who shared a special kind of love through a special kind of friendship. It’s about a love of a woman wanting a son so much that at forty-seven years old, gave birth to her miracle son, Josh. It’s about a love between a patient and her doctor. It’s about a love between her life and her death. It is far from being a morbid story. It is an uplifting story, filled with grace, dignity, and respect.
The Sacred Circle
When someone has had a long illness in a family, and death seems imminent, it usually stands to reason that the family stays pretty private within their inner, intimate “sacred circle”. How many men do you know would open their heart and their home to their wife’s friend at this most vulnerable time in their lives? Jerry trusted me enough to let me BE with the love of his life. He let me into their sacred circle. An honor I will always treasure.
It takes humility to be able to step back and let someone else “into” a family’s sacred circle. It takes love. It takes trust. I will always be grateful to Jerry for his ultimate trust in me, and it was through this trust I was able to hold the space for everyone with a sense of calm, love and care that I knew was possible. Something much bigger than myself was occurring in that house… something wonderful… something most assuredly profound… I think that something was a sense of “grace” that came visiting.
Jerry, being so generous with his heart, welcomed me into the fold no matter what. During the entire time I was there, he encouraged me to spend time alone with Susan. She loved it, I loved it, and it gave him a little break to go to his office. It was a win, win, win, all the way around. Jerry loved Susan that much to give her what she wanted and needed, even if it meant Susan wanted him to leave the room. Now, that’s unconditional love if I ever saw it.
From a Jewish mystical perspective, I related what Jerry did to the concept of “Tzim Tzum“, when God stepped back to make space for creation. It is my humble understanding of the Kabbalistic notion, that God originally took up all the space, and there was no room for anything else. When God stepped back to make room for creation (living beings… us) God’s energy was so compacted… it imploded… and shards of God went flying everywhere into the universe as souls that embrace each human.
Susan went through an enormous challenge those past five years, as many people do when being diagnosed with cancer. She was originally diagnosed with “Chronic Lymphostatic Leukemia (CLL)” in January of 2004, while on vacation in Hawaii. Can you imagine that? She wasn’t feeling well and went to a local doctor. She thought she only had the flu. When the doctor did a blood test he told her, “You have leukemia.” Susan was furious and said the doctor was a quack, “How dare him say something like that to me? What did he know?” According to Susan, she was on vacation and that doctor ruined it! It just couldn’t be true! She returned home, after their vacation was over and had another blood test to prove him wrong, but lo and behold, it was sadly true. This diagnosis was to change the rest of her young life.
Susan was asymptomatic until October of 2006 and began chemotherapy treatments in January of 2007. After a year of treatment, which included five monthly rounds of chemo treatments, called, FCR, (the scientific name would just boggle your mind, so no need to spell it out) and sixteen weeks of Campath, (another type of chemo cocktail). Then, as luck would have it, she spent three weeks in the hospital with infections and became transfusion-dependent from May 2007 through February of 2008. Already tired just hearing the details? Can you imagine going through all of that? I often wondered myself, if I was on the chemo path, would I be able to tolerate all the sticking of the needles, tests, drugs and such? Ouch!
We were all elated when Susan went into remission in January of 2008. Unfortunately, it would be a short reprieve. Again, as luck would have it, Susan got a lung infection in March of 2008 and was hospitalized for almost two weeks... another disheartening setback! She had a biopsy, and as it turned out, “it” was not pneumonia, nor another form of cancer. Good news, yes, but the toll it took on Susan’s body left her weak with a very vulnerable immune system.
The Final Culprit
In August of 2008, Susan was diagnosed with an extremely aggressive form of large B cell non-Hodgkins lymphoma that is transformed from the undetected CLL cells, called “Richter’s Transformation”. (Yikes, how much can someone take?) Hearing this news was devastating, (to say the least), as this extremely fast-growing type of lymphoma actually attacks the “treated” cells, and the original lymphoma attacks healthy cells…so what to do now? (Can you believe it?)
Susan held out hope for a Bone Marrow Transplant, (BMT), the only possible cure that would keep her alive. She thought the BMT would be the magic trick… IT would make her body healthy again… IT would be THE answer… but before she could have it, she had to begin chemotherapy once again with a different cocktail that was designed to have an effect on this new type of lymphoma. After that would be accomplished she would have to wait one or two months to be strong enough to tolerate another forty-five days in the hospital. Boy, if that doesn’t wear you out, I don’t know what would!
Susan was steadfast on being optimistic about her treatments and was determined to have the BMT, and be healthy, wanting to go “back” to the life she loved so very much, filled with world travel, adventures, stimulating book club nights, movie nights, lunches with friends, volunteer work, dining at fabulous restaurants, shopping at the finest stores, watching theatre productions, entertaining friends, helping her clients as a social worker, which gave her back a lot and spending precious time with her family.
Susan definitely lived a full life and had much to potentially look forward to. During this period of time, she was so optimistic she even bought a new needlepoint project, so she could keep herself busy in her “upcoming” hospital stay during her impending BMT. That’s how positive she was in thinking that whatever she did, she would be in the next step of her recovery.
Suffice it to say, Susan was a trooper. She said, “yes,” to the new kind of chemotherapy recommended to treat the Richter’s Transformation. It would consist of four rounds beginning in September of 2008 and concluding in December of 2008. (Here we go again. My God!) If you saw her, so fragile and slight, you would have thought, there’s no way she can tolerate this, but Susan did. That’s the type of person she was, full of piss and vinegar and hope! Sadly enough, the first cocktail was a bust after two treatments and another was tried two times after that and neither had any impact. In addition to that, after the third round was done, the doctors were assuming it would be a success and needed a biopsy of her lung to resolve some unresolved issues. This was very painful and kept her in the hospital for another ten days.
In the interim, as the new chemotherapies were totally ineffective, the lymphoma began to grow quite rapidly. She began taking high does of pain medication. Fortunately her doctor was an expert on pain management. In February of 2009, Susan began palliative radiation therapy for huge lymphoma masses growing in her neck. As a new lymphoma developed in the base of her skull, she developed diplopia and lost some control over her equilibrium and leg muscles. In order to see, she had to wear a patch over one eye.
Here’s a funny side story about the eye patch. While Susan was having chemo at Tower, she said to me, “Shelley, will you go downstairs to the pharmacy and get me a beige patch? I said, “Sure, Susan. I’ll be right back.” I went downstairs to the pharmacy and asked for a beige patch. The pharmacist said, “We don’t have beige patches. They only come in black.” Well, I didn’t know what to do. I was determined to get her what SHE wanted and she wanted a BEIGE eye patch! So, I thought for a moment and decided to be McGyver… (an old TV show, where McGyver, a very resourceful secret agent, made things out of whatever was available to assure his escape). I looked around the pharmacy, and it hit me, I would buy that beige stretchy ace bandage stuff and I would wrap it all around the eye patch and give her what she wanted. I went upstairs with the BEIGE eye patch in hand, and said, “Here’s your beige eye patch,” and then I proceeded to tell her the story, and boy, did we get a good laugh about that! (After a while, the beige came off and she had to use the black eye patch… but that’s another story you’ll read a little bit later).
She now wore a beige eye patch and felt much better. (It’s the little things in life that matter, eh?)
Anyway, in addition to treating her neck, a new routine was developed to treat her skull, as well. Although the size of the lymphomas went down, she never regained the use of the nerves that had been affected. As the huge group of nodes were treated and died, new ones grew in the adjacent areas of the neck. I’m telling you, Susan won the trooper award again and AGAIN! Anyone else might have given up, but not Susan Fine. She held out hope for THE miracle breakthrough that would save her life.
The No-Stone-Left-Unturned Dream Team
For me, this particular journey together with Susan “officially” began Monday, March 2nd, 2009, a day after my daughter, and her 3-year old twins, flew off to Japan to spend the year with her husband, as he played professional baseball. I told Susan and Jerry I would be able to help them after my daughter and grandchildren left, and that I would make Susan my priority… my “project”… and I would commit to doing whatever was needed and would rearrange everything else in my life. I knew this would be the last leg of Susan’s “human journey” and I wanted to be there every day until the “end”. I actually had no idea “how long” the journey would be, but for some reason time didn’t matter. You could say it was more like a deep “calling” I had. And that was that!
On Thursday, February 26th, Jerry and I spoke on the phone. He told me that Susan wanted him to do more research…to search the globe if he had to…to find anybody doing anything cutting edge that might be just the “magic bullet” to save her life. She wanted no stone left unturned. She was definitely a warrior and inspired Jerry to be her champion. He loved her so much… he would truly do anything to save her life! (He knew it was hopeless, but none the less, he persevered).
Jerry immediately put an ad in Craig’s List to hire people who knew how to search the web, and told me that within 30 minutes of posting the ad, he had 70 respondents. Selecting four people, Jerry set up a meeting for the following day on February 27th at 4:00 PM with Susan’s newly formed, “No Stone Left Unturned Dream Team“.
Susan was happy that none of us were giving up hope YET, however, Jerry knew from all of the conclusive tests and private conversations with Susan’s doctor, that this exercise was an exercise in futility, without much hope, but regardless, he would go to the ends of the earth if he had to, just to make Susan happy (and he has, by the way). This man, this devoted husband, loved Susan in ways I cannot even express…in ways that would just make your heart sing.
The team: David, Eric, Jennifer, Jerry and myself met in Jerry’s library. Paula, the fourth team member, couldn’t actually attend the meeting in person, but gave her input via a speaker on the telephone. (Isn’t technology great)! Objectives were set, a team leader was chosen and everyone knew what their task at hand would be and the wheels were set in motion. I was to be the liaison between the team leader, David, and Jerry. If David could not get a hold of Jerry, then he was to contact me. I proudly took on the role. I wanted to be of help in any way I could. Postings of their findings would be sent directly to Jerry. A log would be maintained of the hours they put in, and whom they contacted, and Jerry would forward any responses/results to Susan’s oncologist at the City of Hope Medical Center.
The goal was to reach as many people knowledgeable about this rare illness for which the known treatments had not worked for Susan, hoping that there might be something “out there” with the magic bullet of hope. Jerry wanted to give Susan what she wanted…to leave no stone left unturned…to search high and low…to find out as much as possible, as quickly as possible…so the team went full throttle.
We did in fact receive responses from cancer researchers all over the world from Israel, Spain, France, Italy, Germany, England, Norway, Denmark, India, Poland, Cuba, the Philippines, Taiwan, and many from the United States, including the Mayo Clinic, MD Anderson, and Sloan-Kettering. Since Susan’s doctor is one of the most knowledgeable, respected and known authority/experts in treating blood diseases in the world, most responses from everywhere pointed back to Susan’s doctor. Susan was definitely in the hands of the best, and she felt that too.
I told Jerry that I would take Susan to Tower (her treatment center) and radiation and be with her, so that he could go to the office. This made Susan happy, as she felt very badly that Jerry was giving up his life for her and spending all his time taking her here and there and everywhere. But Jerry, being the primary caretaker, knew that every time she showed up for radiation or for a blood test or a transfusion, new issues would arise, and only he was capable of answering the questions posed to Susan, as her memory was a bit skewed due to the medications. Although it seemed that I was taking her, I was accompanying them and once satisfied, Jerry could leave and I would bring her home.
In the beginning, I would come over every day, and pick up Susan from whatever treatment she was having, then go back to my house around 11:30pm, after Susan went to sleep. Jerry trusted me to be his teammate in caring for Susan and Jerry’s routine became my routine, with the exception of Jerry taking her into the shower and getting her dressed. He also made her breakfast every day, knowing she didn’t want to eat, but getting her to eat and then doling out her medications. He still wanted to do all that. I did help him with giving her a shower once, and it took a lot out of Susan just to do something as simple as take a shower. Boy, do we ever take for granted these simple things in life! At some point, Jerry, Josh and I made a spreadsheet of her medicines and posted it on the inside of the cabinet, so that no matter who was administering the meds, everyone knew who gave her what, how much was given, and when it was given. The system worked!
Towards the end, just getting Susan in and out of bed was a challenge. I remember I would keep saying to her, “Good job, Sue,” when she actually got herself into her wheelchair or back into the bed. At one point, she said to me, “Alright, enough already with the ‘good job’…stop saying that. I feel like your talking to a child.” We laughed about it. I thought it was great that her efforts paid off and I wanted to encourage her spirits. I guess that’s the grandma in me.
The radiation left Susan very weak, and also affected the inside of her mouth. Dryness set in and she was sensitive to food and tastes. Everything to Susan tasted metallic. Her nausea and loss of appetite didn’t help either. We would make protein shakes with her favorite flavors and made sure we got the nutrients in the shake to keep her as strong as possible (we even bought Ensure). Since Susan loved chocolate, we added Josh’s organic chocolate milk, but even that didn’t taste as good as she would have liked it too. She sipped whatever she could get down and the dozens of medications went in one pill at a time, slowly… but surely. Her inability to swallow began to concern the doctors and they told her it might be better to stop the radiation, as they didn’t want to cause permanent damage to her throat. Nope, not Susan, she was determined to have radiation to the end of the week and keep on going. She was like the energizer bunny, I swear! Always holding out for hope. That was just a week before she passed.
Susan’s spirit was still strong. She was truly a force to be reckoned with. Anyone who knew her knew that. Unfortunately, so was the Richter’s Transformation. But I have to say that I noticed something fantastic. As her body weakened, her spirit got stronger and her “agitation” about almost everything began to subside. I would tell her so, acknowledging what I noticed, and she would say in that sweet voice of hers, “Really?” And, I would answer, “Really!” and she would smile and rest in a place of resolve. I could see it on her face.
The first few lumps of the lymphoma that grew in her neck just a couple of months prior to this time were surgically removed. Then another fast growing mass began to grow on the right side of her neck. It grew and grew and couldn’t be held back by any chemo treatment, nor could it be removed. (It was a force to be reckoned with, just like Susan herself). She was battling her own body. She told me she felt like Frankenstein. She could hardly move her neck and it was very painful. It was then that her doctor suggested palliative radiation treatments to shrink the large mass, easing the discomfort, which gave her hope for another round of a new type of chemo.
The Stylin’ Susan
Susan was disappointed about the growing masses for sure, and her discomfort was anything but comfortable, but she just covered up the massive lump(s) with beautiful designer scarves. (That was Susan, graceful to the very end). She wore a scarf on her head, covering up her lack of hair and a scarf around her neck, covering up the growth(s). She did it with such flair and style. I would always say, “Boy, you’re stylin’ Sue, and, you look so beautiful! (Her skin tone always had a rosey, fresh look without any wrinkles). You don’t even look sick. How do you do that?” She would laugh and say, “Really? I don’t know.” And when she smiled, (which was very often, I might add), her whole face would light up and my heart (or anyone seeing that smile) would light up too.
Prior to her illness, Susan always dressed impeccably with tailored clothes that fit her slim body to a tee. She always wore the most elegant clothing for the most appropriate occasions, with the most interesting jewelry and accessories. She wore whatever she wore with ultimate class and style. (I think she learned how to dress this way, working for TWA many years ago, when being a “flight attendant” in the sixties was glamorous and envied by many women).
So, knowing this, you can imagine, with Susan’s sense of style and grace, how she looked as a “pirate” with the “now black eye patch” over her eye, a scarf around her head and a scarf around her neck. Mind you, these scarves were either Gucci or some other designer scarf… not just any ordinary scarf. Susan didn’t have anything ordinary.
One day I said, “Oh, look Susan, we can play pirate. You be the pirate, and I’ll be Peter Pan,” and I began to “fly” in the air. We both laughed. We laughed a lot… somehow finding the silliness and the absurd in the midst of the serious. I loved making her laugh, and I must say, she maintained her innate sense of humor to the very end. And she was really funny! Some of the video clips I took can attest to this, as she would relate stories of her airline days or the day of Josh’s “miracle” birth or any of the other stories she had up her sleeve.
Every day Susan went to radiation, and at least three times a week she went to Tower, where she would get blood transfusions or platelets, depending on the results of her blood tests. Either way, she would be at Tower for at least three hours, if not five or six.
Taking Susan every day to treatment was Jerry’s life. He did everything for her. He would wake up in the morning, kiss her on the cheek and say, “Good morning Poopsie, I love you.” She would smile, kiss him back with those pretty little thin lips and say, “I love you too, Jer.” He would get her dressed and take her to whatever treatment was on the docket for the day. He hardly went to his office anymore. Jerry’s point was that because he knew what was happening with Susan, he wanted to be the one…the one to take her to her treatments. He was very protective in that way.
Jerry told me about the first day of Susan’s chemo treatment at the City of Hope, where they were scheduled to have an appointment with a new doctor. He met a lady by the name of Jeanne, who worked in the resource center. The wait was forty minutes and they had an appointment in a half an hour with her doctor who always had a tight schedule. Since Jerry is a problem-solver, he went to Jeanne, and said, “I need help. My wife is very weak and I know she is new and if we wait in line, we’re going to miss our appointment and I don’t want to mess up the time and miss our appointment.” Jeanne asked, “Have you ever been here before?” Jerry said, “Yes, I was here for the dedication of our family named wing and the opening of the new hospital. We never thought we would be here for this.” He never used any names and Susan got in right away. (Now, that’s service).
Sometimes, Jerry would intercede a little too much for Susan’s taste. She would get mad at him, and say, “Jer, why do you do that? Just leave the room, I don’t want to see your face.” At the beginning, Jerry would just leave the room out of frustration. One day he ran into Jeanne, while going for coffee, and he told her that Susan was mad at him. Jeanne explained that it wasn’t necessarily “Susan” talking. It was the disease and the feelings of anger that she was sick. “Who else can she get angry at?” Jeanne would ask. At her suggestion Jerry marched right back into the room and told Susan that he knew if the roles were reversed that she would be doing the exact same thing for him that he was doing for her. Susan just looked up at him, smiled and said “I love you honey”.
“That was a real lesson for me,” Jerry shared. “I realized I couldn’t take anything personally during this period. I think it’s so important for the caretakers to know that.” Jerry became much more patient with Susan. I’m not saying they didn’t have their spats, because they did. Sometimes I would just hear them spar back and forth, and it was like watching a tennis game. Jerry later shared with me that this “tension” in their relationship helped to stimulate both of them, that it worked, so she wouldn’t be bored. Dynamics in every relationship become habitual, even if the dynamic is not always healthy. Jerry learned that his sarcastic humor could be placed on hold because Susan’s condition was not strong enough to banter in the same way they had always done. Jerry learned to become more compassionate, patient and gentle with Susan. That, in and of itself, is a beautiful lesson to learn no matter when.
Jerry was the most devoted husband I have ever seen, and the staff at the various treatment centers knew this fact too, and regarded him as Susan’s hero. He helped Susan get priority treatment wherever they went and she really appreciated that. After all, if it is important to you then you have to let others know and make it important to them.
The Electric Lift
On Friday, March 20th, I took Susan to Tower to get her blood platelets. In the morning, it was becoming more and more difficult for Susan to walk up the stairs, due to her hips losing strength caused by the growing lymphoma. Susan thought that just by going to her physical therapist, it would get better, but this was not the case. She didn’t really want to admit it was the lymphoma causing her inability to walk. By the time we got home, Jerry had installed an electric lift on the stairs for Susan to be able to go up and down the stairs without any struggle.
Boy, I’ll tell you, that Jerry was just amazing! I couldn’t believe how quickly he manifested everything Susan needed, no matter what it was! I was so impressed, and I sure saw the love he had for her. Here was just another amazing example. And it certainly didn’t hurt that he was able to afford such things. Susan and I imagined and talked about what happens when people have these kinds of illnesses, but don’t have the financial resources to make their lives more comfortable. We even thought about those people that might even be single and have a few kids with no help at all. Susan never took that for granted. Susan was fortunate indeed, for she had a husband who adored her and could afford to give her whatever was needed to make her the most comfortable!
Here’s a funny story about the movies. It was Friday, the 20th of March. We were at Tower waiting for Susan to complete her treatment. It was the same day I went downstairs to the pharmacy to find the beige eye patch. Remember that story? Anyway, I came back to Tower and Susan said, “Let’s go to the movies.” I said, “Great, let’s go.” I am a firm believer in giving someone who is about to die whatever they want. Sandy, another close friend of Susan’s, also said, “Yeah, let’s go!”
I called Jerry to tell him that Sandy and I were taking Susan to the movies. Jerry didn’t think it was a good idea to take her to the movies. He thought she ought to come home and go back to bed, since he was so familiar with how weak she became after spending so much time at Tower. However, Susan didn’t want to go home and go back to bed. She wanted to go to the movies. We spoke to the nurse on staff and the nurse too, thought it was a good idea for us to take Susan to the movies. Jerry wanted us to call Susan’s doctor to find out what she thought, and she too thought it was a good idea. Everyone thought it was a good idea, except Jerry.
Jerry called Susan and told her that he didn’t think it was a good idea. Susan answered Jerry by saying, “I’m an adult, Jer, don’t tell me what to do.” He said, “Let me speak to Shelley.” Well, he was upset. I could tell by his tone, and he said to me in a disapproving voice, “Shelley, do you really think this is such a good idea?” I said, “Well, as a matter of fact, Jerry, I do. I think it’s a great idea!” He harrumphed, and said, “Okay, but you have to help her. She can hardly walk.” I said, “Okay.” It wasn’t that he didn’t want Susan to have fun. He was definitely overprotective of her and didn’t want her falling and breaking a bone or hurting herself. It was his way of showing his love for her.
So, after Susan completed her treatment at Tower, we got into the car, picked up Sandy and off we went to Century City to see “Confessions of a Shopaholic,” which is a movie that Susan probably would never see under “normal circumstances”, but I felt it would be a lighthearted film and we would all get a good laugh. The previous week, I took Susan and Sandy to see “Madea Goes to Jail.” Now that was definitely a movie Susan would never see and we all laughed and had a great time! I believe sometimes it’s important to lighten up a situation with humorous, silly, non-significant experiences, as these two movies I mentioned above were. It was great to see Susan laugh and let the little girl inside of her have a good time just for the sake of having a good time! We got her home safe and sound, and Jerry was relieved and happy that Susan enjoyed herself. After all, what else is there, especially at a time like this?
Maritza, The Housekeeper
I have another story in particular to share, with regards to Maritza, Susan and Jerry’s housekeeper. Let me just say that Maritza LOVED “Miss Susan” very much. She has been working for the family for over four years. Maritza was “personally trained” by Susan, which meant that everything in the house was immaculate, impeccable and in perfect order, just the way Susan liked it (and expected it). Maritza was so well trained, she knew exactly how to properly set a table, how to properly handle the delicate treasures and how to properly take care of Miss Susan, Mr. Jerry and Joshua, as well as any guest that came into the house. Maritza is truly the most delightful and devoted woman I know, with an amazing work ethic and loves to keep the house clean. And she’s funny too!
This one particular day, Susan had to go to the bathroom. She was at the stage where she was unable to hardly walk at all, as the lymphoma had already affected her hips. She didn’t really want to “get” that it was the lymphoma causing her hips to hurt, preventing her from being able to walk. She was wheelchair-bound by this time, and we had to help her get in and out of bed and on and off the toilet. Jerry also rented a porta-potty (and a walker) which was next to her bed, but when she had to do more than urinate, she wanted privacy and wanted to go to her own bathroom. I don’t blame her. I would probably want the same.
Anyway, we got her into the chair, wheeled her into the bathroom, got her onto the toilet, and waited outside. Maritza said to me, in her cute Spanish accent, “Miss Shelley, Miss Susan is really lucky. You are such a good friend. I am so glad you are here for Miss Susan.” I said, “Thank you, Maritza. I feel blessed, to be here.” Then she said, “You know, Miss Shelley, every woman needs three things: a good husband, a good friend, and a good housekeeper.” Well, you can imagine, I cracked up, and we both laughed so hard. I said, “You are so right, Maritza, we all need that. You are funny. I bet you laugh with Susan all the time!” There was humor expressed throughout this period of time, because Susan had a fabulous sense of humor, which actually served her in the greatest of ways!
Maritza continues to care for the house and the family. Maritza will miss “Miss Susan” terribly, because she felt that Susan was her teacher, her mother and her friend, in many respects.
Making Sense of Not Making Sense
We all knew Susan wanted to express herself, but sometimes the words would just come out jumbled, taking one random thought from here and one random thought from there, putting them together into sentences (she thought would make sense), which would usually not make any sense. Sometimes she thought she was making sense, and other times, she knew she wasn’t, and it would frustrate her. She saw herself losing the “Susan she knew.” And yet, sometimes Susan and I would just look at each other without saying a word, and I knew she knew I could understand her sense of frustration and sense of loss. We would usually just shuck our shoulders at the same time, wince our eyes at each other, and communicate with the looks on our faces. It was in those poignant moments our souls connected and we could feel the unconditional love between us.
The Caring Doctor
Jerry and Susan spoke daily to Susan’s doctor. Frankly, I never saw a doctor so caring and attentive. Susan looked forward to her daily conversations, and somewhere between five and six every evening, Susan would glance at the clock and say, “Oh, my doctor will be calling me any time now.”
It came to be that Susan wasn’t really able to talk on the telephone very much, for it tired her out. As the time went on, Susan wouldn’t talk to anyone but her doctor… (and, if anyone knows Susan, talking on the telephone to her dear friends was one of her very favorite pastimes, so for her NOT to have the energy to talk, was a sign that Susan really didn’t feel well).
Sometimes Jerry would have separate conversations with Susan’s doctor, where the doctor would inform Jerry of the severity of the situation. When the doctor spoke to Susan, she held out hope for Susan and didn’t want to damper Susan’s spirits with “too much information”. I learned that it’s such a fine line for a doctor, to know how much information is revealed to the patient, when death seems so near… without a realistic hope for recovery. I had great empathy for Susan’s doctor, Jerry and Susan. It was difficult for Jerry, knowing and not speaking of what he knew… as Susan would hold out for hope… him knowing there might just not be any hope to hold onto. At least Jerry had his friend, Barry, also a doctor, to confide in, share his thoughts, doubts, hopes and fears with… share his potential loss of the love of his life.
Susan’s doctor was on top of this case. She loved Susan and did whatever she could to save her life. She did everything humanly possible to keep Susan alive. She responded promptly to responses Jerry forwarded her from the internet research, and expressing her appreciation for the time and effort everyone was making on Susan’s behalf. It was quite something to watch!
Closure With The Doctor
On Monday, March 23rd, (only five days prior to Susan passing), I went back to my house to get a few things, since I knew Jerry was taking Susan to see her doctor at City of Hope. Susan hadn’t physically seen her doctor in over a month, and I was elated that Susan was going to have an opportunity to see her doctor face to face, instead of only on the telephone daily, which, again, was remarkable. How many doctors do you know that would call their patient every single day?
While at home, Jerry called me to ask me if I wanted to go with them to see Susan’s doctor at City of Hope. I mean, come on, is that not trust, or what? I was honored, once again. Of course I wanted to go. I wanted to be in on everything! Jerry and Susan picked me up from my apartment and we drove to City of Hope in Duarte, about thirty miles away.
Susan’s doctor met us in the office where Susan was to get a blood test. She went over the details of the blood test and then we went into a small room. (Her doctor was on her lunch hour and made time to see her). I think it was as important for her doctor to see Susan, just as much as it was for Susan to see her doctor. Jerry asked me to come in with them. Boy, if this isn’t the most private moment in someone’s life, I don’t know what is! I stayed in the background, so they could have as private a moment as possible.
Susan sat in her wheelchair, weak and lethargic. The doctor asked how she was feeling. Susan’s first words were, “I’m done. I just can’t do this anymore, doctor. I don’t want to suffer any longer. It’s just too much.” Jerry and I were floored, since neither one of us heard this from Susan before. We thought Susan was in denial of the severity of the situation holding out for hope… for that miracle cure, that magic bullet. Then, Susan began to console the doctor. That was Susan! She said, “You are the best doctor in the world and I am so grateful to have had you take care of me. I know you did the best you could.”
Jerry and I just sat there in amazement. Tears came flowing down each of our cheeks, as well as the doctor’s. The doctor responded by saying, ” I am so sorry, Susan. There was nothing more I could do. This kind of lymphoma is so aggressive, I couldn’t control it with any of the treatments we had. You are such a special person and I have been so honored to treat you. I feel I have failed.” Susan, in her Susan like way, with her high pitched New Jersey accent, said, “Oh, no, don’t feel like that. You did everything you could. You are the best doctor anyone could have ever had.”
We all cried at the closure Susan needed to complete with her doctor. The doctor promised that she would do whatever necessary to make Susan as comfortable as possible and not experience pain. We spent over ninety minutes together, all crying and laughing.
The doctor told us that inevitably Susan would go to sleep and just never wake up.
Susan spent the rest of the day in a private room, receiving platelets and getting the dressing changed on her PIC line (which took over an hour and a half, since every time the nurse peeled back the existing tape, her skin would come with it…that’s how fragile her paper thin skin became). She was exhausted by the end of the day and we left City of Hope around 6:00 PM.
Susan didn’t have any biological sisters. She had a brother, but at this time in their lives, they weren’t that close. Over the last few years, Susan gathered together a group of women she felt especially close with, she called, her “sisters”. Years before, when she initially began treatment, we would get together, as much as time allowed, just to chat, to love Susan up, and to talk about life. It was always stimulating, fun and loving. We all had Susan in common. There was Sandy, Mary Ann, Nora, Leslie, Sue, Cathy and myself… each with a different, rich story… each knowing and loving Susan for many years… each from different paths of Susan’s experiences. Naturally, she had other close friends, but for whatever reason, we were deemed “the sisters” and so it was.
Usually, when someone is dying, we don’t always get to share WITH that person what we would say ABOUT that person at that person’s funeral. Well, this time was going to be different! I was determined to get Susan’s “sisters” together, not just to attend her funeral, but to attend an “awakening”, while she was still living, a special gathering to create a sacred space, where these special women in Susan’s life could tell Susan what they felt about her TO her.
Something else came to me. I also thought about having each person find a some small trinket that belonged to them, it could even be a button or something small enough to fit into a small voile bag to give to Susan and place it in her coffin, so she would always have a “piece” of each of us with her. Of course, we know this is silly, since the spirit leaves the body, but it was in the ritual of finding that special something and giving it to her on that day of the GATHERING that was profound and meaningful.
After visiting with her doctor, and with Susan declaring that she had had “enough”, I knew it was urgent to call the “sisters” together for this very special gathering to say goodbye to Susan as soon as possible.
On the way home from City of Hope on that Monday, I told Susan about the idea and suggested we have it on Wednesday. She said, (again in her high pitched New Jersey accent, that I can imitate really really well), “Okay, but let’s have it on Friday. Cathy is a psychologist and has clients on Wednesday, and Mary Ann works, and I’m sure they wouldn’t be able to take off and get together that quickly.” I said, “Susan, what happens if you die on Friday?
Susan looked at me with those soulful, beautiful brown eyes of hers, and asked, “Shelley, am I going to die on Friday?” I said, “Well, I don’t have any idea when you’re going to die Susan. Wouldn’t you feel badly if you didn’t have it on Wednesday, and you didn’t get a chance to see your sisters and let them tell you what they want to say to you, isn’t having the gathering better sooner than later? If people can drop everything they are doing for a funeral, your friends certainly can drop whatever they are doing to say goodbye while you’re still alive and tell you how much they love you to you, instead of about you.”
From everything I observed and was told by the doctor, I “knew” she would not be coherent enough by Friday, since her mind was checking out rapidly.
When Jerry dropped me off at my apartment to get my car, I immediately got on the phone and called the “sisters”, telling them about the “awakening” for Susan, and every single woman, said, “I’m on, I’ll do whatever it takes to change my schedule to be there.” Even her friend, Fran, another extended “sister”, flew in from Kansas City that morning to return that afternoon. “What do you want me to do?” each person asked. I said that I would make an egg soufflé, and Sandy said she would decorate Susan’s exquisite dining room and make it absolutely fabulous, which she did. Sandy is the decorator of the group. Sue brought Chinese chicken salad and we ordered from Factor’s Deli, another favorite of Susan’s. Everyone made it. Everyone sensed the urgency and within twenty minutes EVERYONE was committed to attend the gathering on Wednesday.
The dining room looked eloquent and festive and definitely had the “Sandy touch”. The table was covered with Susan’s favorite tablecloth and Sandy brought statues of women and jelly-beans and everything that would connote a party. Susan loved entertaining, so this would be the last hurrah she would experience.
It took some doing getting Susan down the stairs, but we made it. She sat in her wheelchair at the head of the table, and, thank God, she was coherent enough on that day to hear/feel the love that was being bestowed upon her. I was so glad. I just knew (intuition) one more day would not be good. She heard everyone’s words and you knew she “got it” by the beautiful smile of hers.
One by one each woman sat at her side, either reading something she wrote or just expressing from the heart. Some sisters wrote things, others just spoke from the heart. Either way, Susan knew this was a special moment and we just loved her up so much. It was the most beautiful ritual I have even seen.
Each “sister” gave her a little trinket with an explanation of why she selected that particular item. We were all crying at various times, and it was cathartic, healing and wonderful. Everyone said they had never participated in something like that, ever. Frankly, neither had I. It just came to me and we actually pulled it off… and it was an extraordinary healing experience for everyone! I would bet you that whenever we think of that day, we feel it all over again.
We videotaped each person connecting with Susan and you could see on Susan’s face the love being absorbed and welcomed with an open heart. Everyone left around 4:00 pm, when the rabbi came to console with her.
That was the last time Susan was to be out of bed.
That Fateful Day
Friday night, before Susan passed away, Jerry and I agreed on the schedule for the following day. We had no idea “it” was to be “the” day. Susan did not want Josh to find her already gone. We assured her that would not happen. Jerry was leaving at 7:30AM to attend an auction and I was to replace him in staying in the room with Susan, so she would not be left alone, just in case.
Jerry was/is the ultimate caretaker, as he was also taking care of Maritza, trying to buy her a house at an auction, so she would always have a place to live, without ever having to worry about having a roof over her head. This is the kind of guy Jerry is…always helping those he loves with the most generous heart. I certainly learned a great deal about Jerry and the true meaning of “generosity of spirit” during this time. I gained a newfound respect for him and loved the fact that he allowed himself to hear insights about how he affects other people with his words, and how his male energy was sometimes a little too harsh for Susan’s tolerance. He learned to be sensitive to her needs in a very different way.
On Saturday, in the morning, after Jerry woke up, Susan was still sleeping. The room was dark and quiet, so Susan wouldn’t be disturbed. Only a slight beam of light came through the crack in the curtains. I entered the room and began my “watch”, as we agreed.
Since my intention in being with Susan was to bring a sense of peace to her soul and help her transition with grace, dignity and respect, with a little fun thrown in for good measure, I thought, “Why does ‘dying’ have to be so morose? Why can’t it be sweet and loving and kind and gentle with soft beautiful music…with a scent of sweet smells to remind the senses of such a beautiful life? After all, death is absolutely a part of life. All of us are not getting out of here alive. We better make it damn good!” And so it was on that beautiful Saturday… that fateful day that Susan’s spirit was to leave her body.
For a while, I stretched out on the bed next to her, gently stroking Susan’s head and the little hair she had growing out like a baby. I turned on her iPod, as I had downloaded some of my favorite peaceful pieces of music, (which she had used at various times to meditate). I picked “Heavenly”, a CD produced by Victoria’s Secrets. I know that sounds corny, but this music sounded like angels singing, and was so soothing and healing, (it was the same music I used for her video, which was shown at her funeral before the service. If you were there, you know what I mean). I also played the musical version of “Graceful Passages”, which is a CD of songs from different traditions that address the passing of one’s life in a beautiful way.
I wanted to set the tone of a calming, healing feeling (and knew that since hearing is the last sense to “go”, deep down she could hear whatever I played, even though she was not conscious). And so, as the beautiful music played in the background, I sprayed the scent of “rain”, an essential oil, into the air, filling the room with a gentle mist that smelled fresh and clean and sweet. I even sprayed it on me throughout the day, so when I went near her, she could smell me too. I didn’t really know if this sense was in tact but I figured it smelled so good, how could it not be a good thing?
We did not know that Susan’s passing would actually be THAT day… however, there were signs we were told to look for, so I stayed in the room, thinking I would do some work behind the curtain, without disturbing her and watch her at the same time. I set up my computer and stayed in the bay window between the curtain and the window (I felt like the wizard of Oz behind the curtain), sitting in the glorious sunshine, while Susan lay in the dark, cozy in her own bed.
Susan’s wish was to die at home and not in a hospital or strange place where she didn’t know anyone. Wouldn’t you? I would move the curtain aside every two minutes, just to check on her, but frankly I couldn’t concentrate on anything I “thought” I was “supposed” to be doing. What was I thinking in thinking I would actually get any work accomplished? How silly of me! I WANTED to just BE PRESENT without anything else to “do”. It’s amazing how sometimes we think we have to “fill up the time” with something other than just BEING in the stillness of life. So, the “wizard” (me) came out from behind the curtain, packed up my stuff and put it aside. There was to be no work for me that day!
As I stood beside the bed, looking at Susan’s fragile little body breathing heavily, I noticed she was a bit uncomfortable moving her legs back and forth, grimacing. I sensed that she was in pain and was told that Susan’s doctor needed to be called right away if she looked like she was in pain. I phoned Jerry immediately, and he called Susan’s doctor and his best friend, Dr. Barry. Barry rushed over, as Jerry had to go to City of Hope to get the medication. Barry was another angel to be at Susan’s bedside. We spent twelve hours together, making Susan as comfortable as possible, as her doctor promised.
Before Barry arrived, I noticed that Susan kept kicking the covers off of her, even in her unconscious stupor. “What was going on?” I wondered. When her legs kicked the covers way off of her legs, I noticed a huge pool of stool, urine and blood underneath her body that had leaked through the Depends she was wearing (sorry for the graphic description, but I don’t know how else to describe it. I hope you’re not grossed out. I’m convinced that GRACE embraced this experience, as I was anything but grossed out. I just knew this was a huge sign that Susan’s life was near its end).
My friend, Susan, was lying in this pool of wet, (not stinky though, as she had not eaten for days). It was right after that moment I called Jerry again. I had never experienced anything like this with anyone, so my imagination/television/movie experience/common sense said, “Once the organs begin to shut down and the body releases, the time is near.”
I looked at her and said, “Okay Susan, today is a beautiful day, and if today is the day you are going to die, you’re going to go in the light. (I was alone with her). You are not going to go in the dark.” So, I hit the remote control, and the drapes opened up like the parting of the Red Sea about half way and the glorious sunshine filled the room with light… just enough.
Barry arrived and took Susan’s pulse right away. He also exuded a sense of calm. He reported she had a struggling heart rate and he could see she was in pain. Medication was on its way, prescribed by her doctor, but it would take some time. (Her spirit’s journey was close by, but I had no idea how much time, twenty minutes??? An hour??? Four hours? Eight?). It was not easy to see her in the uncomfortable state she was in. Barry was in the other room, busy on the phone communicating with Susan’s doctor and Jerry. All the wheels were set in motion and there was nothing to do but wait.
I just couldn’t leave Susan like that in a pool of wet. I had to change her. I had to do it before Jerry would arrive home to see her like that. Susan would be humiliated. I had to give her the dignity she deserved. It was then I asked Maritza and Carmen (another part-time housekeeper) to get a bucket of warm soapy water and lots of towels and clean sheets. I asked Barry to stand by, as I may need him to help me maneuver Susan’s body.
Maritza and Carmen came into that room with one thing in mind: to help Susan regain her dignity. I had gone into her closet and picked a nice white buttoned-down shirt with a zebra print scarf to tie around her neck. She was going to be decked out, just like she loved.
We were ready. It was then I felt like a midwife…preparing for a birth with the bucket of warm soapy water and towels, (but in this case, we were preparing for a death and the birth of her soul into a new experience).
With great care and love, the three of us cleaned Susan up, managing to do everything ourselves. As Maritza and Carmen stripped the bed, I washed Susan’s body, (yes, even her tushy) with total honor, regard and respect. It was as if I was washing one of my grandchildren, with no other thought than to leave her sparkling clean.
We had to be very careful (as she had a PIC line in her right arm, and growths in her throat and body, she was so very fragile), so, we gently rolled her on one side, then the other side in order to roll the sheets and mattress pad away from her, as we replaced the soiled sheets with the soft (probably 800 thread count) clean sheets. Susan always had the best of the best! We then dressed her in her Prada shirt and Gucci scarf, and covered her. She was ready… dignity, grace and all!
The Spirit’s Adventure
After everyone left the room, I lay in bed beside Susan, and while the music was playing, guided her on a gentle and brief journey. “Just let your body sink into the bed,” I whispered softly in her ear. “Allow a soft, soothing, healing light to enter the top of your head as you breathe in, slowly, gently. Imagine this light entering each and every part of your body, as you breathe it in. That’s right. Gently, soothing light. This light enters your head, circulating in your brain, circulating around your face. All the muscles in your face just relax, letting go of any tension in the body. Now just let this soothing, healing light travel down through your neck, your throat, your shoulders, down into your arms and into your fingers…breathing in this soft, soothing, healing light, as it travels down into your shoulder blades, down your back into each vertebrae. Feel this soft, soothing, healing light circulating into your heart, your lungs, your stomach, your intestines…circulating in your hips, as your body feels heavier and heavier…your spirit is floating higher and higher, feeling this gentle soothing light down into your legs and now you are bathed in this light, inside and out.
“With every breath you take, this light expands all around you, gently holding you, as a baby is held in the womb… you feel safe and loved and comforted. You find yourself inside a big bubble of this gentle, soothing, healing light. This bubble begins to lift and takes your spirit higher and higher, gently floating up and up. You see beneath you a field of beautifully colored flowers. You can smell them… see them… appreciate them. You are whole a healthy, feeling wonderful.
“And now, you are floating over a beautiful crystal clear lake, where you see your reflection as this whole, beautiful and perfect being. You feel a sense of calm… and love… and joy. Just let yourself drift higher and higher until this bubble lifts as high as high can be. You are among the stars now, as you look down upon the earth and feel a sense of well being… drifting, floating, as you feel your spirit become part of the universe. And just let yourself be there, just for a little while, enjoying the freedom to fly.”
And the music played and there was a loud stillness in the air. After awhile, I brought her back into her body, lying in her bed and repeated this journey another three to four times during the day. So you can imagine what it felt like in that room. It was magic!
I asked Josh, Susan and Jerry’s son, and Gaby, their daughter-in-law, if they wanted to come in the room to say goodbye… to have closure… “for today just might be the day,” I said. They each came in and said their “goodbye’s,” even if Susan didn’t answer back. She “knew” they were there. She knew.
Sandy, also came over that day, and said she could feel a sense of calm, and knew that something wonderful was taking place. How often does anyone say that about someone when they are dying? I’m telling you, GRACE was holding the space with/for each and every one of us.
Dr. Barry also said he witnessed something he has never experienced before and the feeling has stayed with him until now. This is what he had to say about his experience:
A Natural Day
Barry S. Schifrin
I shall always remember the day of Susan’s death as a natural day. “Natural”, because death is natural, whether it is brought on by “natural causes” or it is the natural end of a rampant, disease that fulminated despite modern care. In either case, nature brings us to the inevitable, inescapable moment when we breathe our last and we become separated from our activities, our thoughts, our feelings, our very existence.
It has been said that, irrespective of what has transpired with our lives, our activities, our achievements, our failures and distractions, we die alone. It has also been said that the rich are alone only by choice. Susan did not die alone. Irrespective of her resources or the circumstances that Susan would have tried to dictate for the inevitable moment, and she certainly would have thought about it, it is likely that the realities of that day transcended her wishes or plans.
Some people are fortunate enough to die, somewhat sensate, with loved ones around them. The ambience is somber and hushed. Brief expressions of love and affection and some sobbing punctuate the heavy silence. This is understandable; it is human – it is “natural.” Because everyone is aware of the inevitable outcome we begin mourning in anticipation. There is little of this rite of passage that is especially beautiful or inspiring. That is because these scenes do not have Jerry or Shelley or Maritza to embellish the moments, to make these final hours a thing of beauty and an eternal memory.
Many things are written about love and friendship. Commonly, we are offered the notion that love is perfect, all encompassing and all satisfying. Love is the freedom to be yourself and the freedom not to want to control the activities of those you love. It is the fulfillment of love that something comes back to you from the act of loving and of course, being loved in return. It is being surprised and thrilled that unexpected acts of kindness done for you so anticipate your own needs and values that makes love grow, cascading upwards. Love is not constant.
Perhaps even more common than these notions of love are the notions that while love endures and survives we do not always express it as well as we might or even seem to be in love, irrespective of the underlying feelings. It sometimes seems that our actions do not always uphold the fundamental notion that love is a kindness, it is not a favor you do for someone – somehow expecting something in return.
Jerry and Susan are husband and wife. Susan and Maritza are mistress and servant. Shelley and Susan are “sisters” in the euphemistic sense that they are close, but not really related by blood. Each of these relationships involving Susan represents a friendship irrespective of the formal or legal relationship.
I do not use the word “friend” casually. I mean it to connote a special relationship, more commitment than involvement, more affection than familiarity. It is possible to love someone without being their friend, but in my construct, you cannot be a friend without loving them. Friendship transcends the notions about implied beneficence involved in the customary relationships between provider and recipient such as doctor / patient, lawyer / client, teacher/student, even parent / child where the provider owes his most enlightened resources to the benefit of the client, patient, student or child. Friendship adds the notions of trust and love.
Thus I shall remember the day and the interaction of Jerry, Shelley and Maritza, as the fulfillment of every notion of “natural” friendship that I could imagine. At times, there was Jerry, talking to Susan, curled behind her, cradling gently the body that Susan would soon abandon. There was a tenderness, passion and fondness there that lovers who are friends may sometimes achieve. At times, there was Shelley, also attached to Susan by the length of her body whispering endearments to her. It was not so much that death was hours off, but Shelley and Jerry were trying to fulfill a timeless need, not to say goodbye, but to continue to maintain, even bolster the loving friendship; despite the circumstances. With Maritza, usually in tears, they were trying to make their friend happy, to make a place where their friend was cared for, where her needs were met, where both her body and the inner place where she lived were caressed, where she was loved. Around this hearth, in this cocoon, they took turns entwined in the intimate, passionate embrace of still living friends – friends that were insulated from embarrassment, from self-awareness and however improbable, even from folly.
I remember my parents’ deaths. I remember my father’s funeral and was later dismayed that although he and I would talk over the years since his death, I always wished that I had said something at the gravesite. When the time came to bury my mother I was prepared to say something, but when the rabbi asked me whether I wanted to say something, I declined, stating that I did not think that that I would be able to make it through my remarks without breaking up, without feeling inadequate to the task, without being pertinent and sufficiently appreciative. “You will speak,” the rabbi said. It was not a suggestion, or a recommendation, but a command – probably heaven-sent. “Besides,” he said, more gently and understandingly, “everyone will understand that it is your heart that is talking – the words will work themselves out.”
That is how it seemed. Though Susan was silent, Shelley and Susan and Jerry and Susan and Maritza and Susan were indeed talking to each other. The words were tender, comforting, respectful and life affirming. It wasn’t “girl talk;” “their hearts were talking” and your heart would have to be cold not to be warmed by the unfolding scenes.
We remember some quiet events because they fulfill our notions of how strangely beautiful and unforced they seem. On the day that Susan died, she lived, loved and was loved. Susan, Jerry, Shelley, and Maritza shared something that day that was inspiring and wonderfully natural.
Goodbye, Susan. I am thankful to you and your “friends” for this intimate and touching farewell. It is only natural, that it will reside forever in my memory.
Susan’s Final Breath
Barry left around 11:00 PM. There was really nothing left for him to “do” and Jerry said, “Go home Barry. Get some sleep. You’ve done enough.” Everyone was pooped, as it was a long day. Barry went home. We all went downstairs to say goodbye and stayed downstairs for about fifteen minutes. We were discussing who would sleep where. It was decided that I would sleep in the guest bedroom, and Jerry would sleep with Susan. If anything were to happen during the night, Jerry would wake me up.
I climbed the stairs and was on my way to my room, when I got an overwhelming sense that I must say goodnight to Susan, so I entered her room. She was lying on the bed with her eyes open (not focusing on anything, her eyes were just flickering, so I knew she wasn’t conscious) and breathing very short, quick gasps. I knew this was it. I knew she would be “going” any minute now. I am sooooo glad I followed my instincts to go into her room. I immediately sprayed “rain” into the air once again… guiding her into the light one last time… and within two minutes, she had let out her final breath. How lucky for me that I was there. I knew there wasn’t enough time to go and get Jerry, so I savored the moment. As soon as her last breath was expressed, I called for Jerry to come up and told him she was gone.
Josh was in his room. Daniel and Gaby were outside in the casita, sleeping, and Jerry and I just stood there looking at Susan, sending her on her way with love. I closed Susan’s eyes and Jerry kissed her on her cheeks and her lips and said, “Goodbye Poopsie. Sleep well.”
Jerry immediately went into Josh’s room and told him that mom was gone. They held each other and Jerry came out and called the police and the paramedics (because we didn’t have Hospice). They came over within the hour. Routine questions were asked. Jerry had a “DNR” (Directive Not to Resuscitate) and gave it to the police. After all the appropriate paperwork, they deemed her time of death, 12:33 AM. Shortly thereafter, the mortuary arrived, wrapped Susan in a vinyl bag, zipped her up, carried her downstairs, put her on a gurney, strapped her in, and away she went, never to step foot in her home again. She died in her home, as she wished. Her next stop would be Mt. Sinai Memorial Park.
The following day, Jerry and I went to the cemetery to meet with the funeral director, bringing Susan’s favorite outfit that she wore for Josh’s Bar Mitzvah…even Lucy, her wig of choice.
Susan wanted to create a video of her talking to Josh about her life, so he would always have something to remember her by. I did shoot some footage of her, early on in the month and towards the end, however, when she saw herself, she didn’t want anyone seeing her in that physical state, so we stopped filming.
Then, one night, I had a vision of producing a video of her life, using photographs and music to be played at the funeral. At first, it seemed a little “weird’ and then we all got into it. Sunday was the day that Gaby worked on the photo collage of Susan, while I created the video montage of Susan’s life. It was my second time using iMovie, and I was not extremely proficient at it, but knew “enough” to create something simple.
I used the music I played for Susan during her exquisite transition, as I wanted everyone to feel what she had experienced. I was going to bring the scent of “rain” and spray it in the chapel, but Jerry thought it was a bit too much. At first, he wasn’t even sure he wanted a video, but when he saw the final product, he was so touched that he called the cemetery and made sure there would be a monitor able to show the video outside the chapel, so people would be able to view it before the service.
Gaby and I worked well as a great team. Both of us worked into the wee hours of the morning. The following day, Howard, Jerry’s number one son, came over and fixed whatever needed to be fixed on the video, and I have to admit, the video turned out beautifully! It made us all cry and touched us deeply. It was a beautiful way to honor Susan and bring her memory into the hearts of those that attended the funeral.
So, on that final day, Jerry, Maritza, Josh and I drove to the cemetery together. The casket was opened and there was Susan, laying there, not looking like herself at all. In fact, her skin was grayish and very very cold. There was definitely no life left in her body, but I knew that her spirit was free. I gently touched her hand and told her how much I loved her and thanked her for giving me the greatest experience of my life. I then inserted the “sister’s” trinkets into the casket, and placed some photographs and letters in there, as well. Once Jerry saw Susan, he decided it would be better to tell Josh and other family members that it might be better for them not to see Susan that way. Some chose to look anyway, to say good-bye and others chose not to look, and then the casket was closed.
Before everyone even entered the chapel, the video was playing on a screen outside and everyone could hear the mesmerizing music and see the photo collage and enlarged portrait of Susan setting on easels. It definitely set the tone that something special was happening. This was not your ordinary funeral. This was Susan’s funeral and everyone felt the “something” different.
After the cantor sang a beautiful prayer and Rabbi Baron spoke so eloquently about Susan, Jerry stepped forth and this is what he said:
What Jerry Said:
“It is difficult to know where to begin.
Those of you who know Susan are fully aware of her specialness.
I am sure she would be so flattered to hear and have read all of the wonderful things family, friends, patients and peers have said about her. About how much she meant to them and the positive impact she had on their lives. She would say “really?” “Do you really feel that?” And best of all, she would really mean it.
Susan was special even as a little girl. She was entertaining, making people laugh. She was a charmer. As she matured in the business world she became more confident that she could rely on her innate instincts to validate her views on behavior, manners, integrity, style and doing what was right.
Giving birth to Joshua and getting her Masters degree in Social Work a year later were the catalysts for causing her to blossom into who she became finally, in the last fifteen years of her life.
Things never came easily for Susan. And in turn she wasn’t an easy person. She had always had to work very hard to obtain her degree. We fell in love on the first night we met, and have been together ever since. It was not easy for either of us in the beginning, but we knew it was good and we stuck it out.
From the time of her diagnosis over five years ago, we grew ever more closer to each other.
In my reflections of our past I realize how important each of us were in our mutual growth and development as a family and as adults.
We were truly partners in life; connected at the hip she would say. We provided each other solace in our disappointments and basked in the joys of our achievements together. We shared a wonderful, fulfilling and exciting life together.
I am so thankful to have been able to spend 27 years of my life with her. I really do not know who or where I would be today if it were not for her influence on me.
To those who know our son, Joshua, and have complimented me on what a fine young man he is, I always respond that the credit really goes to his mother. She was ever present and ever pushing. And that goes for me as well. Ever present, ever pushing.
And when people complimented her on Josh or on her achievements, she never forgot to mention my support as well.
After all, isn’t this, what partners do, for each other? Isn’t this what marriage is about? Pure synergy. Being more together than each of us could be if alone.
How much better a person I am for having Susan being my wife, for being in my life.
I will miss her next to me at night when we would laugh and giggle, or her taking my hand in a movie, taking care of me, taking care of our son, taking care of our family. And for being so special.”
The rabbi then called upon me to speak. This is what I wrote:
What I said:
“I know that many of you wished you were standing here to speak
because you loved her as I did…
so I am honored to serve as your heartfelt spokesperson.
I woke up yesterday morning with words that wanted to be spoken…
about Susan and life.
I’d like to share them with you now.
Thoughts came flooding into my mind throughout the night.
“Everyone has a birthday,” I heard myself say to myself.
“And everyone has a death-day, too,” I also heard.
“What’s important is the celebration of one’s life, either way.”
We prepare for a birth.
We stay calm and create an environment of comfort.
We bring the towels and the warm soapy water.
We bring the midwives to assist.
We make the mother comfortable…waiting for the baby’s arrival.
We wait patiently. Only the baby knows when it’s time.
We midwife the birth with regard and respect.
So too, can we prepare for one’s passing.
This is the kind of experience that I was able to share with Susan and I am so grateful to her for that.
Being with her this past month has truly been a blessing for me
and I know how much she appreciated my being there.
Giving myself the gift of BEing with Susan…
without anywhere else to go…
or anything else to DO…
without the angst of rushing through the experience…
was the gift.
Only Susan’s spirit knew when it was time for her to go.
We just loved her up, played soft, sweet music…
To gently guide her on her way…
And sprayed the scent of sweet “rain” into the air…
So that her senses would remember the sweetness of life.
And then, we waited patiently, as with a birth.
And so it was, the gentle passing of Susan’s life with ease and comfort.
Sandy was right on when she told me:
“Here was a woman who had a zest for life…
that wouldn’t quit.
One week before passing, she still wanted to go to the movies.
Her inner strength was coming through to the very end.
What she heard was, “No, don’t go…go back to bed.”
What she said was, “No, I’m going. I’m an adult. Don’t tell me what to do. I want to go to the movies.”
She innately knew it was her last outing…
So, when we finished at Tower getting her last platelet transfusion,
I put her in the car and we picked Sandy up…and off we went to Century City to see…
“Confessions of a Shopaholic”.
Now, for those of you who knew Susan, this was definitely a new genre of movie for her to see.
She laughed that laugh of hers…
and smiled that wonderful smile and had a great time!
She even ate a half of a chicken salad sandwich on a croissant.
And so she did it, and did it HER way, and even picked her own seat.
We, her caretakers said, “Let’s sit here, then you don’t have to get out of your wheelchair.”
And she said, “No no, let’s go up there.”
She wanted to go where she wanted to go and that was that.
We practically carried her up the stairs, as she was holding onto the rail and we helped her into her seat…
Certainly making sure she wouldn’t fall.
Not on our watch, especially!
Jerry would kill us!
Susan was definitely a spirit to be reckoned with.
We even thought about going out to dinner and then she said,
“No, I think I’m a little tired, I better go home…”
That was a week ago Friday.
On Wednesday we had a gathering for her
with a group of women, she called “her sisters”.
We were the fortunate group to celebrate her on that day.
And thank God she was coherent enough to feel us love her up.
That was the last day she was to get out of bed.
And we sit here today, celebrating her life.
She was truly a one of a kind person…
One who was always thoughtful and concerned for everyone’s well being.
She was able to help so many people because she was innately attuned to their psyche somehow…
She was so concerned about other people that it didn’t matter
what was going on with her, even when receiving treatment.
If you happened to call, she would always ask how YOU were, if everything was ok…and was always eager to hear about YOU.
She always gave the best of herself, no question about it.
We’re going to miss her advice…it was so damn good.
We all walk away with a bit of “Susanisms”…how to shop…what to buy…where to eat…and what to do with our lives.
She became our very wise friend.
I love you Susan, and I know you know I do.
What Leslie said:
Leslie, Susan’s niece, was like a daughter to Susan, and also part of our “sisters’ group. This is what she had to say:
“My unselfish, bighearted, kind, altruistic, lover of life, giddy, joyful, emotional, intimate, loving Aunt Susan was such a wonderful person. She loved life so much and didn’t want to die and couldn’t believe that cancer in her early 60’s was her destiny. She loved life so much that she wanted everyone to enjoy it as much as she did and it was evident as she was always guiding people to go to certain restaurants or try certain hotels or travel to certain places or shop at certain stores because she loved those things.
She had a way to make light of life and tell funny stories or sing songs with such humor. I have such a typical Susan video from last December where she is wearing a head scarf to cover her short hair and she said, “Don’t I look like I just got off the boat? I need to go make some Borscht”…then she broke into a song of Sunrise/Sunset.
She didn’t want people’s fears to get in their way of doing things because they would miss out on life. We once went to a spa together and instead of getting the usual massage, we opted for a somewhat scary sounding treatment of a Native American mud bath as only Susan could be the one to say, “Gee, that sounds like fun”. …there we were rubbing mud on each other and sitting on extremely uncomfortable, cold tile benches instead of relaxing on a warm, comfortable massage table.
I believe everyone who came in contact with Susan found her to be one of the most generous people they knew. I first learned how generous she was when I was just a little girl and Susan was in her early 30’s because we were driving down Santa Monica Blvd. in Hollywood in her Datsun 280Z when we saw an old lady crossing the street with ragged clothing, worn down sandals and a look of bewilderment on her face. Susan felt compelled to roll down the window and ask if she needed help or a ride home. The lady accepted our ride and when we helped her into her apartment, we noticed how disheveled, hot and dark it was. After we left, Susan immediately called Social Services to make sure she would be taken care and we later returned with a fan to cool her and some other supplies. How many people do you know that would stop to help a stranger off the street?
I also knew she was generous of her time because she always made time to chat on the phone and get together with friends and family to discuss life or simple everyday things. I have no idea what kind of phone plan she had, but she must have had a zillion free minutes with all the calls she received and made. Not only did she make time on the phone and in person, but always remembered peoples birthdays, anniversaries and other events by sending cards, calls or thoughtful gifts like balloon bouquets or candy bouquets. Anytime we went to Ahh’s or the drugstore near her office, she always picked up extra cards…just in case she needed one.
She was sometimes generous with her words and opinions…sometimes not always pleasant, but generous nonetheless. If she didn’t like the table at a restaurant she was given or a hotel room she was shown, she would make sure they were told, “I’d like the third table please.” Which meant she wouldn’t like the second they show her, so might as will give her the best they have.
She was generous in voicing her love and emotions and always told her friends and family how much she loved them. There was no way anyone could doubt her love for them as she expressed it often.
I want to thank you, Susan for showing me all the emotions of life and for teaching me to love life and fight for what I want. We will all miss you terribly. I love you and will meet you in Paris!
What Susan’s Doctor said:
This is the eulogy Susan’s doctor wrote and was read at her funeral:
Susan Fine was an extraordinary woman, in every respect. She was as tough as fighter as could ever be imagined; always willing to do whatever was necessary in order to save her life, no matter how difficult.
She was as gentle as could be imagined; always willing to do whatever was necessary to help others around her, and to assure that their lives were better for knowing her.
She was as bright and knowledgeable as could be imagined; always reading, always ready for a good discussion, always current and interested in the world around her.
She was a beautiful woman, both on the outside and, importantly, on the inside as well.
She was a driven human being; driven to excel in all that she attempted; driven to have a child—Joshua; driven to go back to school to become a licensed clinical social worker, when this was clearly not “necessary”; driven to start a practice; driven to succeed.
She was a thoughtful and caring woman, whose life was filled with love, and with an abundance of friends. This, in itself, speaks loudly about Susan, herself. She loved many and was loved greatly in return.
Susan’s life was full and accomplished and very well lived, and much too short. I feel blessed to have known her, and will always remember Susan as a woman of great substance and grace.
And so it was. Susan Adelman Fine: Loving Wife… Mother…. Friend… Sister… Aunt… Clinical Social Worker… Woman of Valor… So many qualities rolled into one life.
For anyone thinking about taking care of someone you know/love with grace and dignity at the end of his or her life, I say, “DO IT!” Make it special. Give that person something to remember. It doesn’t have to be morose, I promise you. It doesn’t have to be an awful experience. I know that sounds strange, but the more you love that person up (and yourself by doing so), the more special the experience becomes. You will never regret it. It is the greatest blessing! It too may become the most profound experience of your life, if you let it!
Here is Susan’s Obituary, published in the LA Times, Tuesday, March 29th, 2009:
Fine, Susan (Adelman) M.S.W., L.C.S.W, passed away after a three-year battle with CLL and Lymphoma on March 29, 2009. Married to Jerrold for twenty-seven wonderful years. Mother of Joshua. Stepmother of Howard, Adam and Daniel (Gabrielle). Sister to Joel Adelman (Caren). Susan is remembered by the “sisters” who have loved, feted, laughed, and gave her all of the support anyone could wish for, which she appreciated and returned with love over and over. Susan’s energy, determination, hard work and love of life allowed her to live a full, diverse and fascinating lifestyle.
After graduating college she traveled to Europe for over six months with two girl friends and then joined TWA. When promoted to upper management, she became a supervisor and was able to enjoy her passion and travel the world. She became a docent at LACMA, giving her a chance to study and explore her love of art. After returning to graduate school at USC, she obtained her Masters Degree in Social Work, which allowed her to become a L.C.S.W. in private practice in Century City. She was elected to the Board of GLAZA and served as co-chair of the Beastly Ball, its major annual fundraiser. She was a staunch supporter of Israel, women’s rights, medical research and Jewish education. She will be missed by all who were touched by her caring, sensitivity, style, humor and most of all for her ability to help others to be more than they thought, so they could try to shoot for the moon, and actually get there as she had.
The disease was just as determined to survive as she was. Only it was unaware of the consequences of its success. We are very grateful for the care and treatment she received at the City Of Hope and especially the close relationship with her oncologist Dr. Alexandra Levine, the Chief Medical Officer at the City Of Hope. In lieu of flowers please direct any donations there.
The family wants to thank those who helped through this difficult time especially Shelley Whizin and Dr. Barry Shifrin. Others are too numerous to mention but you know who you are.
Listen to your mother and take a sweater. You are the best. You lit up our lives.
Services will be held at Mt. Sinai Memorial Park at 5950 Forest Lawn Dr. Los Angeles, on Tuesday March 31, 2009 in the Tanach Chapel at 12:00 noon. The family will be receiving visitors at their home only the day of the funeral until 9:00 PM.
No flowers, please.
It is I who was blessed, to know Susan and for the gift she gave me…to unfold my life’s calling, my life’s purpose… to help families and individuals navigate their experience of losing a loved one, gently taking them by the hand, from a state of fear and anxiety into a place of peace, grace & ease, honoring the journey, turning the horrible into healing… the sadness into the sacred.
I will be forever grateful to my friend, Susan, and I thank her for continuing to be my angel of grace, my guide, my rock.
I learned something very important about myself through this experience, that you could trust me with your life and your death. What bigger honor is there? I don’t know.
What I do know is that being with someone you love who is dying doesn’t have to be morbid. I’m not saying it doesn’t feel horrible, because losing someone we love feels absolutely horrible, but the horrible can be turned into healing with just a few adjustment changes in our thinking.
I’m also not saying it isn’t sad, because it is. As humans, we have the ability to love, which means we also have the ability to hurt, because we love, and when we are losing someone we love it hurts, it’s sad. It goes hand in hand.
What I am saying is we also have the ability to shift the way in which we handle the experience, depending on what intentions we bring.
I knew something bigger than myself was happening at the time. I was grateful to be given the sense of grace and calm that helped guide the way for her and the entire family.
I was given the gift of understanding that being with someone you love, who was dying, could absolutely be a healing, life-changing, and profound journey, able to be taught to others who are going through the same experience. I learned that with intention, everyone is able to consciously bring the qualities of honor, dignity and regard into the human understanding of death, creating a meaningful, loving and sacred human experience to celebrate the fulfillment of that person’s soul in the most beautiful way possible.
I say, let’s make the last moments of someone’s life the most beautiful last moments possible.
If you have a loved one who is dying and don’t know what to do, consider turning the entire experience into a loving-up fest and see what happens.