We are all in this together. That is one thing that is different about the COVID-19 global pandemic and my myeloma “solodemic.” When I was first diagnosed with myeloma, it was hard to find anyone who could relate. Then I found the myeloma “support” group. It was fantastic… at first. But then, each day my FB page (where I connected with them) was filled with horrible stories of extreme suffering and prolonged death. I could not bear it any longer and had to leave before I got too depressed. But now, in this facet of life of social isolation, we can all relate. We all speak the same language of loneliness.
In the early days of COVID-19, I received a letter from the Seattle Cancer Care Alliance, warning me that leukemia and myeloma patients are at highest risk of catching COVID-19 and if they get it, they are most likely to die. The warning advised that I practice extreme social distancing. That I do not go out for any reason, even canceling many of our medical appointments and worst of all, have no contacts with anyone that does not live in my house.
About three weeks ago I was asked to participate in a study. The premise was, because there were virtually no myeloma patients in Asia who were COVID-19 positive, there is a theory that somehow, either having myeloma or taking myeloma chemo protects you from the infection. I had enough renewed (but false) confidence that I went to a hardware store while wearing gloves and a mask. It was my first outing. In the study, they hope to check the antibodies against COVID-19 in 1000 myeloma patients. I was able to join the study and will receive my test kit soon.
But then I wake up this morning to the news that “blood cancer patients such as leukemia, lymphoma and myeloma are the most vulnerable to COVID-19 and in Asia, they died at an alarming rate.” What? But this confusing information what we all face and will continue to face until we understand this virus better. But once again, it warned about the need for us blood cancer patients to take extreme measures.
Sometimes I see the human psyche as very fragile. I know when I was raising my kids, at times, I felt like if I made one mistake, say I forgot and left them in time-out a bit too long, they would grow up and become sociopathic killers. But then, at other times I am amazed how resilient the human psyche really is. My dear aunt Helen, who practically raised me and is on her last leg as I type this, endured the slow deaths of her two sisters and mother from TB, then her father from a heart attack, then her brother (my dad) went off to WWII, all while she was a young girl. Helen was the happiest and most balanced person I’ve ever known. I don’t know any holocaust survivors personally but knowing what they went through is incredible that they did not go insane.
I want to share a little about my struggle, but this is not looking for any kind of pity. The stories that we know the best are our own and that’s all I’m trying to do.
Besides surviving this past year’s unbearable stress and doing so, I think by God’s grace, without any major depression. I was suicidal at times only to escape the suffering, but not frank depression. But now, the loneliness is one of the biggest challenges I’ve ever had to face.
Denise leaves for work around 6:45. I’m awake but not up. I am then completely alone at home for the next 12 hours. I do not leave my property, unless I sneak out with Greta (my dog) for a hike on an isolated trail… if I can find one. Then, Denise comes home completely exhausted and stress out. In case you don’t know, she is the nursing administrator at a hospital with COVID-19 patients and her job is intense and never-ending. While she is with people all day, the only words I’ve spoken are words to Greta. She has her own difficulties to deal with and I wish I could support her better.
When Denise comes home, she is completely “peopled out,” and does not want to talk to me, except for essential words, but prefers to be alone or to watch a movie.
I will end with my story here, except to say, you get the drift. I also know that I don’t have a monopoly on loneliness right now. I know many of you, like me, want to scream at times. I do have the fortunate situation of living on three acres and on a lake. I can go kayaking and work on my property. My son Ramsey lives alone in Seattle and works from home. He tells me that this kind of loneliness has haunted him for years. No, it is not healthy but sometimes there is nothing you can do about it.
I remember a classic scene from an old miniseries that was on network TV in the 1980s about the western expansion. The story followed a fur trader in the Rocky Mountains in the 1700s. The only other people west of the Mississippi were Indians and he had to do everything possible to avoid them. Once a year, this trapper would gather all his beaver pelts and float down the Missouri River to a trading post in Kansas. But in one scene, after being alone for almost a year, he comes out of his sod house he was living in and ran to the top of the mountain in his dirty red long johns and started screaming that he’s going crazy from loneliness. His cries were met with complete silence, save the wind blowing down the Tetons. I get it now.
It is always a good thing to try and make lemonade out of lemons. I want to study the old Christian hermits, those who left society and lived alone in the deserts or mountains (this was the precursor to monasteries) for decades. While I don’t agree with their reasons for leaving society (a dualistic view that this world was dirty and evil) I do want to learn how they coped and flourished. Then I think of others who had to remain alone, like the Tom Hanks character in the movie Castaway. I guess Greta is my “Wilson.” By the way, I am so grateful for Jean and Diane’s phone calls today. I’m sorry I spoke too long.
So I pray to God that this nightmare will end, that somehow the virus will vanish or an unexpected treatment would arise (I bet it won’t be hydroxychloroquine or drinking Lysol) or, if the lemons remain that we can make lemonade and we all find nourishment in our solitude.
5 responses to “Ramblings: Navigating the Pit of the Crazies”
It would be great the lemonade from all the lemons life hands us was the cure for being lonely. Maybe it is and that is why there are lemonade stands.
Pray for both of you daily. Hopefully your health will continue to improve and Denise will have a lighter work load soon. Give her my love.
I understand as well as possible (given that thankfully I don’t have MM) the loneliness of living with chronic disease, for me – migraine. In the waning days of in-person support groups, it gave me a big boost to actually feel supported, as in be in the presence of people who shared the same or similar diagnosis. When online support groups essentially replaced what I think of as the real thing, they left me cold. For me it is essentially hollow and without energy or true connection, so I rarely even read columns from migraine blogs. They just don’t speak to me or the years and life I’ve had to carve out around migraine disease. And they do nothing to impact the loneliness, which has of course now been amplified beyond measure by Covid-19. In fact with the advent of social distancing, my migraines have spiked both in frequency and intensity. Phone conversations (voice) and Zoom meets with family and friends help though I yearn for real contact and presence and the energy they bring. Do those things work for you? I’m finding that glitches in the technology, which I never normally use, make a huge difference for me. The fact that you don’t look people in the eye, as in no true eye contact, drives me crazy (both Facebook and Zoom) and I leave the exchange kind of hollowed out and frustrated. Being outside in the garden or swimming in Bellingham Bay both seem to put me in a more connected place. J. Mike, I hope for all our sakes, we are soon once again, in literal touch with one another and that your wife is able to move off the front lines.
I think a lot about headache sufferers during these difficult days. While there are three new treatments that have come to the market in the past few months, still many others are finding it even more difficult to find good care. We were on the threshold of starting a new headache clinic in Bellingham, just before COVID-19 hit. It is now tabled, maybe for good. I know of one hospital out east that listed “headache treatment” as elective visits, along with cosmetic/aesthetic treatments. They listed colds, twisted ankles and etc. as non-elective. This shows a strong bias against headache patients and I wrote them a letter to that point. I don’t know the outcome.
Thanks for sharing your journey with us! I am healthy and am trying to stay that way! I have a son who comes every night who works in relative isolation. We try to remain part in the house. We will come out of this stronger I hope. This kind of crisis brings out the best and the strongest in most most of us and the weakest and worst in the rest. Thank God they are in the minority! Continued prayers for your health!