(Apologies in advance for the relatively esoteric nature of this article! I’ll attempt to give some background at the end for those of you who are interested.)
While I was staying with Sue Hulley in November, it was becoming apparent that the chemotherapy was not working to reduce the tumor – she could feel a lump growing daily in her side, and later tests confirmed this. When I first asked her how long she thought she had left to live, she speculated two years, but within a week she had revised that down to a matter of months. Not long after, it was only weeks. She accepted her rapidly shrinking lifespan with her characteristic calm and good humor.
Sue was all about cherishing others, and in very practical ways. Something I wrote at the time gives a glimpse: “On Sunday morning I woke at 7am to find Sue attempting to bake for the Tuesday night meditation class. She couldn’t stand up, much less reach things, so this was going to take all day… instead I offered to be her hands and we made a rather nice cake. If anyone has an excuse to beg off baking duties and be unhelpful, it is Sue. But cherishing others is what she does – she is going to die as she lives and live as she dies.”
Sue was not sentimental about her death. Her last email to her fellow Teacher Training students, people she had been close to for 15 years, was factual, let everyone know that she could no longer receive visits or phone calls, and ended simply with: “I look forward to studying with you in Keajra. Love Sue.” She also wrote some Christmas cards not long before she died, on which she wrote messages like: “Merry Christmas. Have a great rest of your life! Love, Sue.”
The most important thing we talked about during my ten-day visit was preparing for her death and next life. Our conversations started in the car, like this:
Me: Where are you planning on going when you die?
Sue: Hmmm, well, I was talking about this with someone the other day, and we concluded that we would like to go wherever Geshe-la wants us.
Me: Where do you think that is?
Sue: I suppose Keajra? (the Pure Land of Buddha Heruka and Buddha Vajrayogini).
Me: Are you feeling a bit vague about this?
Sue: I suppose I am.
Me: I think if we want to go to Keajra, we have to start believing that we are in Keajra now. I don’t think it works to assume that we’ll just suddenly go there if we haven’t gotten used to being there ahead of our death.
Sue: (goes very thoughtful). Yes, I have been thinking of it more along the lines of “I’ll keep my nose clean and then with any luck go to a Pure Land. It is a bit dualistic. I’m putting it off.”
Me: That dualistic view is quite natural for us, and perhaps it is like some people’s idea of a Christian heaven. But in Buddhism we have to put our mind where we want it to be – it is not a question of being rewarded sometime in the future.
We have to have no reservation either. We have to really want to be there, more than anything else. (This point is at least implicit in the first of the so-called “five forces”, aspiration – we do have to know clearly what we want and actually want it!) If Buddha was to appear right now and say to you: “Sue, I am going to give you a choice. You can stay in Marin for another twenty years and then die and go to Keajra, or you can be in Keajra right now without delay”, which would you choose?!
Sue: (laughing) Good point. I would want to hang out here with my friends for another 20 years and then go! But I have to want it MORE than this.
Me: Yes, and the only way that’ll happen is if we’re thinking about it all the time, and what it actually means to be in the Pure Land. As you know, it is not a real physical place with lovely fountains and whispering trees (looking a bit like Marin!) that we are going to magically turn up in sometime in the future if we create some vague aspirations and causes for it now. It is, of course, primarily a state of mind. We have to practice being there until we are.
Then, there will be no contradiction between being in Marin and being in the Pure Land 🙂 For example, when the great Tibetan Yogi Milarepa was asked in which Pure Land he attained enlightenment, he pointed to his empty cave.
We can describe the Pure Land as like heaven, but it is not really the same as many Christians’ or Muslims’ notion of heaven (depending, I suppose, on what they mean when they say “heaven on earth” ?!) We are not buying into this human life and using it to garner a reward, or a “promotion”. We want the Pure Land now. It seems to me that if we don’t want it now, it means we still have attachment to a more ordinary life, and these are stones around our feet that will prevent us from leaving samsara. Do you agree? To go there, we have to want it more than this. And we have to want it now. There is only now.
Sue and I then had several discussions about what state of mind Keajra or the Pure Land was, and Sue spent a lot of time focusing on this. As a result, she said that death no longer felt like such a “big deal” to her, more of a seamless transition, and she found a deep peace with it. There is a description of sincere Tantric practitioners in the Root Tantra of Heruka:
For such practitioners, death is just mere name –
They are simply moved from the prison of samsara
To the Pure Land of Buddha Heruka.
Death is smoother if we are already living as if we are in our next life. Less “bells and whistles”, less of a “razzmatazz and production”, as Sue put it, with accompanying wand gestures. Our friend Marsha Remas had been telling us about the title of a book she was reading, “This IS your next life!” Sue loved that.
There need be no contradiction between living this life and preparing for the future if we are now putting our mind where we want it to be in our next life.
I think that a Pure Land has basically three ingredients: faith, motivation, and view. This will mean different things to different people, including those in other spiritual traditions. For me, in brief, and for Sue, faith means a profound feeling of closeness to my Spiritual Guide, the Buddhas, the Dharma, and the Sangha, holding them all in my heart. Motivation means renunciation (the wish for true mental freedom) and bodhichitta (the wish for enlightenment for the sake of all living beings), which keeps me very close to others, free from attachment, also holding them all in my heart, even when the fleeting appearances of this world and body dissolve away. View means the wisdom realizing the empty dream-like nature of all phenomena, inseparably mixed with the clear light mind of bliss. (Tantric practitioners can combine these three with self-generation, you can find out more about that in Modern Buddhism).
It seems to me that this is the best way not to be separated from those we hold dear. With faith, motivation, and view, we lose nothing when we die. There is nothing to fear. We are where we want to be, for our own and others’ sake.
When Sue and Bill dropped me at the airport, in what turned out to be Sue’s last “outing”, she said: “This was not a dead flower visit. This was very ‘real’.”
When Sue died, her family stayed with her for an hour and a half, and then left her alone for another hour and a half. When they returned, her left hand, which had been by her side, was over her heart, and her mouth, which had been open, was now closed in a peaceful half-smile.
Your turn: Where are you planning on going when you die, and what are you doing now to get there?
Some background information
We have the potential or seeds for both heaven and hell. Which comes to fruition depends on which seeds we water.
According to Buddhism, the “Pure Land” is the experience of a purified mind, whereas “samsara” is the experience of an impure mind that is still contaminated by the inner poison of delusions. Here is a short description taken from Living Meaningfully, Dying Joyfully:
In a Buddha’s Pure Land everything is pure; there are no sufferings, no contaminated environments, and no impure enjoyments. Beings born there are free from sickness, ageing, poverty, war, harm from fire, water, earth, and wind, and so forth. They have the ability to control their death and rebirth, and they experience physical and mental suppleness throughout their life. Just being there naturally gives rise to a deep experience of bliss.
The Pure Land could be considered similar to the Christian idea of heaven (or other religions’ idea of paradise), but in Buddhism a Pure Land is the experience of a pure mind — there is no external creator who rewards us with it (or who, alternatively, can send us to hell.) The mind is the creator of all. To attain a Pure Land primarily involves purifying and controlling our own mind. Faith (mixing with the pure minds of holy beings) and positive karmic potentials also play a part in helping us reach the Pure Land.
Sue Hulley, who died yesterday, was able to greet her illness and death with grace, compassion, and humor. So about a month ago I asked her if she would kindly write something to help the rest of us get ready for the inevitable. She managed to finish several articles, mainly on the practical side of things, with the help of her partner Bill and her son Tim. Here they are.
It seems very sudden when you hear that voice at the end of the phone, or coming right at you in the office, informing you that you have a life-threatening diagnosis. It’s hard for me to know which one I wanted. I guess having it on the phone would make it seem less real, give me a layer of protection, some time to control my responses.
Instead, it felt like Dr. Sowerby really got through to me. And it felt as if this really was harder for him than for me, although he didn’t say that. After all, he was the man who diagnosed me with pylori without a biopsy hoping, i guess, that i did have what causes 9out of 10 ulcers.
And this was the man who knew what lay ahead, in all of its gory, after the endoscopy. He knew that my life would never be the same. That, in fact, a whole new life – albeit probably of limited duration and often of maximal intensity — was beginning. His empathy told me as much. And I was so grateful. Let’s face it, bearing details of future pleasures is nice, but getting such a definite demarcation between past and future from someone who cares is so meaningful. You can start to take care of yourself and look out after the rest of the people in your life.
Taking care of business
If there’s one most important thing to do before tackling a serious illness, it’s to get your affairs in order. Of course, this advice could feel as if you’ve been told to get good genes, but you DO have control over this. Actually, you usually hear this phrase after you’ve been told about your illness; the irony is that you should have done this years before. But the usual American understanding is that if you get serious bad news, THEN you start planning. Although this attitude is understandable — based on our denial and wishful thinking — it can have serious negative effects on the loved ones around us.
So what affairs are we putting in order? In my life, there seemed to have been two areas, one the more practical, the other the more psychological / spiritual. In the practical realm, having a will, doing some estate planning, and communicating the result to those involved are all critical. That way, you enter any possibly life-threatening situation with everyone around you knowing what it will mean for them in practical terms. Hopefully, they all even agree among themselves about what these are, and their roles after you’re gone. If they can know the professionals involved in these decisions, so much the better; this can transform them from isolated individuals into a powerful team working on your and their own behalf.
Having covered these knotty matters, I should mention the easy, carefree aspect of your job — human relationships. We all have our own set, with its complications and intricacies. And most of us, myself included, know that every relationship that went west was because of the other person. However, it’s a good idea to wash as much of this laundry as you can before you hit the skids. And, since none of us knows when that’s going to be, I would advise you to start ASAP. Of course, you may be reading this having already received your diagnosis, or already involved in your dire situation. But you could help your loved ones, or survive your illness, or possibly you don’t have the bad situation yet; and I hope for your sake, one or more of these is true. That would leave you totally free to follow this advice.
In addition, it’s a really good idea to find some tradition, practice, belief, or activity that fulfills your spiritual needs. It’s more important to have one, than what it is. That way, when the news comes, you’re not just one more deer in the headlights. For example, when someone asked me, “When you got your diagnosis, what did you answer when you asked, ‘Why me?'” All I could say to her was that that thought had never occurred to me. Because Buddhists believe that we cause our own destiny through the millions of thoughts or actions we have over our numerous lifetimes, I don’t view events as happening TO me, but as coming FROM me. This means that I both caused this present situation, in this or another lifetime, and that it is extremely important for my future how I respond to it.
This practice is a resource you can draw from, throughout whatever lies ahead. Of course, it CAN be developed after your diagnosis, but because of its timing, it could be suspect. If this happens for you, be sure to search your mind very carefully about your own motives, and upgrade them as much as you can.
While exercising my arm patting myself on the back for my excellent grasp of taking care of business, it suddenly occurred to me that something had been left out – who’s taking care of you all this time? And it occurred to me that even if you haven’t done any of the things I recommended previously, the fact remains that we all need someone to take care of us. Actually, this is a pretty interesting area, because it involves personal relationships, possibly your loved ones, financial issues, and, depending on the expertise of your caregiver(s), help with solutions to all of the issues we’ve talked about up until now. For example, my primary caregiver is also able to deal with my finances by paying bills and such.
One place where people often start is to consider your practical living situation, and what physical needs you might have. Take a couple of inventories – what support system or resources have you already built up, and your remaining needs if any. Even if you are well equipped to handle your current situation, plan for the future, when your needs could increase. AND do it sooner, don’t wait until it becomes an emergency. For example, you might have a great cleaning lady, and she might know other people who could do related household tasks. Or, where we live, there’s a pool of Fijians, who often move from household to household. (They are especially popular because of their dispositions and the fact that many of them are quite strong. Given how hard it is to find affordable hoists, they have saved many the back of a less robust caregiver.) So get your resources set up for the inevitable ahead of time. Of course, your inventory of needs would depend on your specific situation.
Interacting with people regarding your illness and evolving situation
It would be a good idea at the very beginning, while you still have a lot of energy, to make up email groups of your various communities.
Interacting with doctors
In the past, talking to your doctor has typically meant listening to your doctor. But times are changing. We as patients are being encouraged to be informed consumers, and to take a more active part in our treatment. What this means for you and your doctor is that rather than being a one-down participant, you are in a collaborative partnership.
However, there is no doubt that you are much less knowledgeable than your doctor in the area of your illness. So it’s a good idea to do some general research and learn as much as you can about your disease and its treatment, before you meet. Additionally, it’s critical to take somebody to your appointments with you, to take notes and ask questions. Also this gives you someone to discuss your situation with in an ongoing way, based on the same experience.
It also helps to make a list of questions to ask the doctors. For example, “Given my kind of cancer, what are the expected things that might happen at each phase, and what kinds of things can my caregiver(s) and I do ahead of time, to counter each of these?” Also you can ask your doctor of any item along the way, “Why is this necessary?”
If your doctor can’t tell you anything without using Latin terms, it’s time to get a new one. It’s really important to see how you feel, being with your doctor. As when you meet any other person, it’s important how you feel about your relationship. With one of my doctors, I never felt I could say, “MY oncologist”. You want to feel that this is your doctor in a personal sense, fighting for your personal interests. With this particular doctor, I always felt that he came in and just read my chart. Anyone can read your chart, but you want someone who cares. If this is not happening, you CAN ask to change doctors, or get a second opinion.
Sometimes people get embarrassed about asking questions from doctors, but don’t forget that YOUR health is the goal here. So the doctor is working for you (whether they realize it or not). According to the HIPAA rules, the patient has the right to get all the information relevant to their situation. This means you can ask for copies of any of your test results, the analysis, and any other medical notes. For any tests that are taken, you can ask why it is being done, what the possible outcomes might be, and what those results would mean.
If you go through your treatment not asking, you’re more likely to feel like a deer in the headlights in each meeting. Or even worse, when looking back, like a mushroom (kept in the dark and fed manure).
I am so grateful to Sue for writing these articles for us in the last few weeks. She also had more articles planned, to do specifically with spiritual practice, but she ran out of time to write them down. Later, however, I can try to relay some good conversations we had in November on the subject.
Bill, Sue’s partner and main caregiver, also contributed the following from the caregiving point of view, for which I am also very grateful.
Caregiving might seem like an easy task, but the routine and stress builds slowly and imperceptibly. I was blessed with a friend who had “gone through it”. We could talk openly and frankly about the process, the ugly parts and the end — good and bad. I hope you, the reader, can find such a friend.
Now to the job at hand.
No matter how many ups and downs there are, the path may very well be downward. The word again is imperceptible. Because many processes are imperceptible, you need to build up an intellectual wall against complacency. If you think something should be done, like talking to a lawyer, fixing a stair step, or writing a letter to an old friend, DO IT NOW. We missed a lot of opportunities by thinking we could do it later. Later never came.
When one’s relatives, friends and acquaintances find out about the diagnosis, they will immediately want to see your charge. For some, it will be what we call the “dead flower” visit – one time with flowers and very awkward as no one wants to talk about what might happen. Early on for Sue, she rejected many of these visits but was happy to talk on the phone. As time went on, the “Rules” changed. Make sure that all visitors, by phone or in person, understand her current limits on time, people and time of day. Do not waver from your rules. When in doubt just ask the patient if you can and live with the answer.
Accepting gifts of time and food
Many people will volunteer time and food. One of the most difficult things for me was to find things for others to do and especially to cook since the nature of Sue’s cancer made it very difficult for her to eat.
As you go on, you should make up a list of things others might do. They need not be totally useful and may also be menial. You will be surprised at what you can come up with if you give up the notion that you are the only one who knows what is needed. In fact, even if it doesn’t do you any good or save you any time, it may be good for the giver. And, don’t forget afterwards. There are many people to tell and personal items to gather and distribute, so outside help will be useful for this difficult task.
In our case, Sue’s son and partner were here for most of the difficult times. Therefore respite and physical health care from others (except Hospice) wasn’t needed; and we could spell each other. In most cases, respite help will not be as available as the offerers hope, so burnout due to lack of respite is possible.
You should use the respite care resources volunteered by others. Start early, it will be particularly useful to “train” caregivers so that you can trust them later when the patient is less able to communicate their needs and your respite needs will be greater.
As Sue got worse, the caregiving became 24/7. Few of us can deal with this, so we strongly advise making appropriate arrangements with relatives, friends or hired home health care workers. Remember, it’s easier to cancel help then to implement a strategy under pressure.
More food concerns
I suppose that there are cancers and chemotherapies that do not significantly modify what or how much the patient can eat. Sue’s chemotherapy greatly modified what she was willing to eat. And she suffered from temperature sensitivity called neuropathy during most of her chemotherapy. This was a constant concern as we would occasionally forget and give her (cold) tap water, which was painful to her.
As time went on, we were continually changing the food that she was willing to eat and the volume of her meals went down to essentially nothing. If there are favorite foods, then by all means, ask for culinary help. But be firm about accepting only the first unsolicited dish. From then on – food only by order. We let it be known that Sue liked Pomegranate sorbet. We never finished the deluge that showed up.
Finally, it is time to give up food strictures once you are in Hospice i.e. gluten free, organic etc. Let’s face it; what is the worst thing that can happen? That’s right, cancer a few years down the road.
The patient will be unable to perform functions that earlier on were simple and easy. The patient is even more aware of these limitations than you are. How frustrating it must be when the patient knows that he or she could do things before but now cannot. As you might expect, it was frustrating for me to watch her fumbling away trying to do some, for her, difficult task. But she did not appreciate unsolicited help. She needed to know that her capabilities had not all been taken from her. We eventually had to evoke a rule on ourselves that unsolicited help was only given when needed for safety. Sometimes it took a little patience as she fumbled. However, our relationship improved. When the time came that something was no longer possible, she was grateful to accept the proffered help.
Similarly, the empowerment of asking for what she wanted was well received. Sometimes we overachieved, but mostly it helped her spirits to be able to make decisions. Not all of them were what we wanted, but if you don’t like the answer, you shouldn’t ask the question.
Everybody has heard about a miracle drug or treatment from “Timbucktu”. Of course you will want to fly off there to get it. (One person who was trying to help did not understand the irony of recommending a “healer” who failed to cure his uncle!) Early on, decide which organizations/ therapists you want to go to and stick with that decision. We’re glad that we did that. As it was, before the end we had gathered over thirty drugs, supplements and a few exercise regimens.
If you read the above, there is probably little more to add. By all means send cards and e-mails. If you phone, ask if the patient can talk, even if it is the patient who answers. If you want to visit, ask if you can visit beforehand and how long you can stay. If you plan to bring something, ask if you may. On the other hand, when a visit is contemplated, ask if you can help by bringing or purchasing something on the way.
The Aftermath by Bill Ring
“It’s over!” That’s what I said to Tim and Meg when they answered my call. It was over for Sue, but not for the rest of us. We thought the pain of seeing Sue gradually fail would finally be ended. It was, but it was replaced by the thought that we would never have the ability to say and do the things we wanted to say and do before she died. In her last days, Sue didn’t care about many things we thought were important. She was focused on her next lifetime and the hope that it would be a good and fruitful one.
Grief is a many-faceted emotion. A turning point came when I realized that many of the facets had to do with me feeling sorry for myself. We always look out for number one, don’t we? Another facet was realizing that when issues she cared about when living were resolved after she died, she probably no longer cares about the resolution. That we could not tell her about them is simply another way to feel sorry for ourselves. When I realized that much of the grieving was turning into ways for me to feel sorry for me, I rejected them and things began to look up.
There were far too many times when Sue and I thought we could discuss and plan later, tomorrow. Far too many tomorrows never came. This is my main regret. Lesson for caregiver and patient: Live like tomorrow will be too late, because it might be.
Sue became a very picky eater. She blamed the chemotherapy, but when it ended, the food-fussiness increased. Finally, the light dawned on us. Food was her one remaining pleasure. She could control very little in her life. What little she could control, she wanted to control. When the realization struck, eating became a comfort and pleasure for her and food preparation a labor of love. Lesson for caregivers: Give the patient what she wants, “It’s not going to kill her!” – the disease will.
On the practical side, the Hospice form taped to the refrigerator was valuable in listing the things she did and did not want to happen to her during her last days. The form is blunt and thorough. Lesson: Fill it out.
One thing that chokes me up, (which is a form of grief I have not yet mastered), is being able to complete Sue’s last requests. I believe that I know what she wanted and it is a great comfort to be able to do it all. Lesson for caregivers: Make sure you know what the patient wants and plan to do it. It will be good for both of you.
For reasons that you do not need to know about, her estate was very complex. The ability to defer the tax paperwork is invaluable. Lesson: Use this time. By the time the forms must be submitted and the bills paid, one can deal with them more easily. But, there is another, more important lesson for the patient and caregivers: Read and reread the living trusts and wills. Things change and these directives must change to accommodate them. We also discovered many errors that were hard to rectify once discovered.
The final stage for me is building a new life without Sue. I haven’t mastered this yet, but if you don’t try, I believe you will be mired in your misery and that is surely NOT what she would want. Final lesson: Talk about the survivor’s life afterwards. Should you keep the house? How about a new significant other? Your relationship with the in-laws?
I hope the above will be valuable to patients and caregivers. I wish someone had given me the information in the blog you have just read.
My good friend Sue is currently in hospice. Please pray for her.
I had the opportunity to visit Sue when she invited me to stay with her for 10 days in Marin in November (overlapping with the 20th year anniversary celebration of Saraha Center in San Francisco.) Here is something I wrote at the time.
“Health is fragile and life is short. I’m sitting in the radiology waiting room while my friend Sue has her port seen to – we have an appointment in an hour with her chemo doctor in the cancer center down the road but who knows if we’ll be done here by then. It is not in our hands.
A woman sitting near us, with a pixie face and big blue eyes, whose hair is just growing back into a fuzz, is asked by the nurse: “Do you want to come with me?” “No”, pixie lady replies, but she goes anyway.
So much paperwork! Just to get past the entrance for a chest x-ray involved paperwork and insurance details in triplicate, followed by a long questionnaire of an entire medical history – all lest the minutest detail might have changed in the last few weeks since Sue’s last x-ray so that, goodness forbid, her insurance might not cover it anymore. Paperwork is challenging even if you’ve just had a cup of Starbucks – what to do if you’re feeling bone tired and can hardly sit up straight?! As Sue says, “Look at the chairs!” These are not designed for people to recline.
“There is only one thing for it”, Sue says, “when you lose your autonomy. I have had to stop identifying with my body and appreciate the opportunity to practice patience.”
And the fact that everyone sitting around you is either in the same boat or already overboard kind of means that there is less room for self-pity. One lanky man sitting opposite us seems to have lost half his face, he looks like a Persian cat and his voice is a sibilant whisper. He is being tended to by a brother, it seems. The elderly lady next to me has sparkling blue eyes and a sweet smile, but also a deep air of resignation. The nurse says to her, “Maureen, that is a lovely sweater. I love the color red.” A moment of kindness in the face of all Maureen is having to go through, a touch of humanity to make the patients feel less alone.
Sue, noticing this too, says, “What a difference even one small human encounter makes when you are in the system waiting for appointments etc. One touch on the arm, and a kind comment, makes it all meaningful.” I tell her that it reminds me in a funny kind of way of being in the busy San Francisco airport the other day. The lack of autonomy as large numbers of people are processed and the individual gets caught up in the big garbage collecting claw as opposed to picked off gently in the tweezers (Sue’s words, she has such a way with words!) Crowded never-ending security lines but one official was so welcoming: “Hello mister so and so!” “Hello Ms L, how are you doing?” “Ah, you’re from the Phillipines, how great is that!” A little bit of love transforms everything.
There will be a changing of the guards as Sue’s valiant and cute as a button partner Bill drives over to relieve me so I can make it to the temple in time for a powa (transference of consciousness) for Maynor. As for perspective, I hear Sue, who has just said that being stuck with cancer treatment is a luxury compared to this atrocity: Maynor was a gentle 19-year-old, always helping his mother and grandmother around the house, when he was brutally tortured and killed in Honduras last week. He was in a taxi and mistaken for a gang member in possession of information needed by another gang. After chopping off 10 toes and 9 fingers, his torturers realized he actually did know nothing and killed him off. Meanwhile, they beheaded the taxi driver for good measure. Maynor was the brother-in-law of Michael, a member of Saraha Center. Maynor’s stunned father was there at the powa, very quiet, but managing to smile at all gestures of concern. His uncle, an old friend called Carlos, was there too, with tears in his eyes: “I miss him.”
Meanwhile, talking of perspective, I have a torn rotator cuff and it pales into nothingness next to Sue’s and Maynor’s situations.”