Many of my friends are still working and complaining about being stressed. Here, I’m pretty bored and boring. The birds are singing, and I can sit in the sunshine with the kitty. I’ve done a lot of easy yoga and physical therapy, gone grocery shopping at 6 am, taken four or five socially-distant friend walks, and twice recently had someone over for a meal outside, separated by a very large coffee table.
I’ve read a couple of mystery novels and re-watched Good Omens and Picard (both yay) as well as some pretty bland, comfort food TV. I’ve cooked more than I have in the last 30 years. I’ve vacuumed and cleaned the bathrooms, but the closets are still in the same condition as they were 7 weeks ago, and sometimes I’m proud that I’ve accomplished the laundry. The last working shower went out on Friday, and I’ve been walking next door with my towel every morning. Thank you, Werner and Qiong.
Last time I wrote, I was feeling as close to normal as I’ve felt in a long time. Unfortunately, over the last couple of weeks, I’ve been getting more easily out of breath, and Sunday’s blood test confirmed the fatigue. My blood counts have gone way down, as bad as they were when this all started or when I went into the hospital in December. Tomorrow, I’ll get a blood transfusion to help. The doctors can’t say yet whether the numbers are caused by too high a dose of Jakafi or the disease progressing. We took down the Jakafi dosage yesterday, and I will give blood again in two weeks to see if there’s an improvement. Obviously, fixing a medication is the preferred outcome.
Sunday’s lab test was a big blow. I hadn’t seen my numbers that low in a long time and was very upset. At that moment, the only people that I felt like I could call were my two healers. A friend said recently that I was the most positive person she knew. The truth is that I rarely show my fear, sadness and grief, and all most people see is the rebound. The old saying ‘smile and the world smiles with you, cry and you cry alone’ is very real, and I generally keep these feelings to myself. The vast majority of people simply don’t know how to react in a helpful way to someone who is - very understandably - crying or scared. So, I thought I would use this update to share what works and doesn’t work for me, personally. I appreciate the forum.
Don’t Tell Me What I Need. A few weeks ago, I called a new friend when I was feeling lonely. I rarely reach out to people when I am in that state, but I thought I could trust her to be sympathetic. The result? The next day she called and suggested that I get professional help. She hadn’t gone through the harrowing last 22 months and didn’t bother to ask first whether I’m already seeing a psychologist. However, she still felt entitled to go on at length about how we all need help from time to time, etc. I was livid for two days. I’m a pretty smart cookie and have lined up a great team to help me through this. Trust that I know what I’m doing and please refrain from giving advice. Don’t try and fix me.
Don’t Tell Me You Know How I Feel. With the few exceptions of those of you who have been diagnosed with a very serious or fatal disease, you do not know how I feel. Several times, friends have said things like, ‘Well, we all face death every time we walk out the front door.’ Sorry, but if you’re a normal human being and not Steve Jobs, you are not thinking about death every day. The statement is untrue and simply inane pablum. It completely invalidates what I’m going through which, believe me, is very different from your daily life, even with the virus.
Don’t Be Relentlessly Optimistic. Several of you feel compelled to try and force me to be always positive. You’ll say things like, ‘Of course, you’ll get better!’ or ‘They’ll find a cure/clinical trial/a miracle!’ or ‘You look better with brown hair.’ There may be some personalities that respond well to people trying to change their emotions. Not this INFJ. First, you have no idea whether I’ll get better. Second, trying to change my mood by being all sunshiny invalidates my real and understandable emotions at that moment and is very frustrating because I don’t feel heard. I’m not going to feel better in that hour just because you act like Pollyanna. Acknowledge my pain (see below) and trust that my natural resilience will allow me to rebound on my own. I usually bounce back in about 24 hours.
Do Be an Active Listener. Acknowledge what I’m going through, e.g. Oh, that sucks! This is a low blow! How terrible/scary/frustrating! This is so unfair! Ask active listening questions so that I can fully verbalize everything, such as: Tell me about the results. What do you think it means? What do you think the doctors will say? What do your healers say? How are you feeling? What will make you feel better? When will you know? How can I help?
Once you’ve asked a question, really listen to my initial response and get me to elaborate. Don’t immediately change the subject. Play back my words to me so I feel heard and can talk further, e.g. You feel terrified. Life really is unfair, etc. Try to keep the focus on me and don’t tell me about you/your brother/friend/co-worker. At that moment, I really don’t care. It’s just another version of trying to fix me or change my mood. I just want someone to listen and to be really heard. That will help me more than any advice, fake philosophy or forced optimism.
Don’t worry, you’ll get your conversational chance. I’m actually a great active listener. Thank you consulting.
I hope I haven’t put you all off. I’ve never really written anything like this before and certainly not when I've been in this mood. I appreciate all of you and hope to see you soon on the other side of this quarantine.