April 26, 2020
In earlier posts I have mentioned any number of medical references, technical resources, and practical aids for the maintenance of the physical body when dealing with cancer. In this post I am going to focus almost exclusively on care for the spirit when one is dealing with cancer or other life-threatening disease or when one has a loved one who is dealing with such diseases. I will make a comment or two that might be useful to those dealing with the very definite angst that the COVID-19 pandemic is creating. Most of these resources are available to anyone, although one is specific to Indianapolis, IN.
1. COMMUNICATION RESOURCES. This bit is specific to people dealing with cancer or other life-threatening disease (including COVID-19 in a severe case).
When you or a loved one is struck with a serious disease there will be tremendous challenges in communication. You will want to communicate some information to a wide group of people, and let them support them support you and your loved ones. And there will be a smaller group of people that you want to interact with in real time who get the unvarnished, news as it evolves status and who in turn can support you when you need it most.
For communicating with a wide group of people there is no tool that we know of better than CaringBridge. The web address is Caringbridge.org. It’s free (runs on donations) and simple.
You set up a journal, and you write entries in it as you see fit and have time. There are two options for privacy: a) you have a journal and only those people you invite are able to see posts; b) you set up a journal and any individual with an account on CaringBridge can read and respond. These are the people you want to keep informed, when you are comfortable sharing information and as you are comfortable sharing. It includes options that readers can set so they are notified when an update has been posted. And there is a comments section in which the people who have access to your journal can respond. And those responses are often very comforting and heartwarming. It is simply a wonderful tool.
For communicating with a smaller group of people in real time: just pick one tool. In addition to CaringBridge, most people will want a way to communicate with those people that are very close – so close to that you want to be able to tell them in real time “the Doctor came out and surgery went well” or “we just got the CT scans and the results are bad,” and then get responses back also in real time. Pick anything you want, but pick ONE thing. Text, WhatsApp, trained flocks of carrier pigeons. Any tool that you are comfortable with will do. Comfort matters: there may be bad days when you can barely think and want to communicate with those close to you. But pick one technology. When you are stressed to the gills, the last thing you need is to manage a group of people you communicate with by email, another group you communicate with via Slack, another that you text, another that you communicate with WhatsApp. At some point, your closest friends and loved ones have to bend to help you. Poll people for a preference if you wish, but at the end of the day pick one technology that works for you and expect others to adapt. If they care about you enough to be in the inner circle, they will figure out how to adapt to your communication needs. Being able to communicate to those closest to you once isn’t just a need, it’s an essential.
2. BOOKS. I’ve mentioned most of these books before. These three are just critical resources, and I list the books in order of “buy this one first”:
- Everything happens for a reason, and other lies I’ve loved. Kate Bowles. A wonderful book. The appendix “Absolutely never say this to people experiencing terrible times: a short list” is worth the price of the book. Read that first. And if you are experiencing a terrible time, and someone says one of the things on the list to you, you have the right to hit them over the head with the book. But don’t. The book doesn’t weigh enough to hurt as much as a person would deserve.
- To Bless the space between us. John O’Donohue. Another great resource for “right away” when a diagnosis hits. A collection of blessings in the style if the Irish. “For a friend on the arrival of illness” was a Godsend for me.
- Your best year ever. Michael Hyatt. Yeah, kind of an odd thing to recommend. And not for the day after you have gotten bad news. But if you have received a diagnosis that’s really bad, sooner or later there will be a point where you wake up one day and wonder how you are going to live the rest of your life. On that day, this book can help. This is also an excellent resource right now for those who are not directly suffering from COVID-19, but who are suffering from the emotional and mental challenge that the pandemic and our responses to the pandemic.
- Anything published by World Wisdom Press http://worldwisdom.com/public/home.aspx). World Wisdom Press publishes books covering a diverse set of religious traditions and schools of wisdom. Several of their books can be read like daily devotionals. My favorite of their publications is a book entitled “Living in two worlds.” It is an edited condensation of the multi-volume autobiography of Charles Eastman (Ohiyesa), who was born in the wild in the plains of the west and went on to get an MD and be an advocate for first nations peoples. This book taught me a lot about bravery when I needed that.
3. ONLINE PERIODICALS AND INFORMATION ABOUT MINDFULNESS PRACTICES. Any of the following may be useful to those suffering from acute disease, chronic disease, or who face anxiety and stress in response to the current pandemic:
- Mindful. Mindful is both a web site (mindful.org) and a periodical. The web site is free, the periodical modest in cost. Both offer great advice on how to live your life mindfully and deal with all manner of stress and challenges. It’s not a cure-all, but it’s a great resource.
- Dailystoic.com. Stoicism isn’t for everyone, but there are many insights to be had from a philosophy that focuses much on the distinction between what can influence and what one cannot. At this web site one can sign up for a daily email message to be sent to you each morning with a bit of wisdom from the Stoics.
- Your morning offering. From https://www.morningoffering.com, which is itself a service of an online service called The Catholic Company. No, not a place where you can mail-order a monsignor, but rather a store of merchandise and books intended for those who follow the Roman Catholic faith. Your morning is a daily newsletter of inspiration and Catholic-oriented religious messages. I’m not catholic, and sometimes the daily newsletter is too deep into the particulars of Roman Catholic theology to resonate with me. But often I find the messages helpful and sometimes even inspiring.
- This is water. The only graduation speech given by famed, and now dead, writer and philosopher David Foster Wallace. A truly great meditation on how we spend our attention and what it means to give something attention. Online at https://www.youtube.com/watch?v=PhhC_N6Bm_s
- http://www.chilel.com. Again, not a periodical. There are many types of mindfulness exercises. I have adopted Chi-lel QiGong, which is a mind / body practice that has common roots with Tai Chi. Chi-Let QiGong is particularly well suited for people with health concerns. I neither know nor care if the cosmology of the ancient Chinese is correct, or if Qi works the way it is thought to be QiGong experts. What I know is that it calms me like no activity other than running, and it is clinically proved to improve health outcomes in the chronically ill.
- https://mindbodystressreduction.com. More general than QiGong, and recently developed specifically to deal with stress of disease, Mind Body Stress Reduction involves many types of thought and body exercise, and is clinically proved to improve health outcomes for those who practice one or more of the techniques recommended. In Indiana a local expert is http://www.lindafbrown.com
4. MUSIC. Whatever music sooths and comforts you, go for it. I could either go on forever, or be very brief. I’ll take the latter approach. Three pieces that move and comfort me particularly when I am feeling melancholy and need a lift are Mozart’s Requiem, Frei wie der Wind by Santiago (https://www.youtube.com/watch?v=sCxURbI2WVE), and If we were vampires by Jason Isbell (lots of versions, but my personal favorite is the one with Chris Thile on “Live from here” available at https://www.youtube.com/watch?v=B8URDdvN_30). And… well, I can’t but mention a bit of opera. Pucinni’s La Boheme IS the best opera ever; I love it, as does Marion. Our second favorite Italian opera is Lucia di Lammermoor by Donizetti. Both remind me of some of the best hours of my life with Marion. Listen to music that helps you, be that opera, folk, thrash metal…. Just whatever helps you.
5. ONE LOCAL RESOURCE IN INDIANAPOLIS. Fairhaven Foundation (https://fairhavenfoundation.org). I cannot say enough about the wonderful people that make this service work. Fair Haven “provides a comfortable and convenient place near the hospital for patients and their families to stay.” We stayed with Fair Haven twice – the second time being when I was having my ileostomy reversed, early in December, when my doctors wanted me to hang around town for a few days after I was released from the hospital. Fair Haven provides apartments for families of patients and patients right near IU Health Hospitals and the IU Simon Cancer Center. But the physical space is not the big deal; frankly we could have paid for a heck of a hotel suite with the money we have donated to Fair Haven since we stayed with them. The big deal is the care. For my ileostomy reversal we found our apartment decorated with a Christmas tree, decorated, with treats and a card. Much more than providing an apartment, Fair Haven made us feel at home in our temporary accommodations in Indianapolis. They gave us not a place to stay, but rather a home away from home.
6. LAST THOUGHTS ON RESOURCES
I hope your life is full of happiness and that you never need to use any of the information in this post. But if that isn’t how things work, and you need help and support, I hope you find the resources identified here are at least half as helpful to you as they have been to me.