Long Walks & Purple Socks

Ken has been sleeping more and more, and my keyboard clicks away he has been sleeping 15+ hours. My mother-in-law (Mama Jo) arrived on Thursday evening after a few conversations updating her and the rest of the family in California about the recent changes I've noticed in Ken's condition. It was a big relief for me to have her here. Not only have these changes necessitated more energy and greater patience than ever before, but aside from that, I wanted someone else's eyes on the situation; and on him. Maybe the changes I've noticed weren't as drastic as I was thinking? Maybe I'm the one who is growing more and more confused? With his nuclear family so far away, I felt the great responsibility in keeping them up to date on changes in his condition. It was nerve-racking wondering if it was time to call them to come Chicago. Or now? Or now? Now?

Because of my co-caregiver, I had the opportunity to take a walk today. The last one I took was mentioned in another blog about a month ago--with a house full of guests and Ken, the director of all the organized chaos. Today I was getting itchy. With him sleeping more, there isn't much to do. Though I can sometimes dive into a project and remain distracted, today wasn't one of those days that would allow it to happen. Though the skies looked ever-threatening as they have so often this dreary spring, I headed out for my familiar two-mile route.

What a delight that most of my iPod selections were about true love, being adrift without it, and the tragedy of love lost. Thinking about the confusion Ken has experienced lately propelled me into a public display of "ugly cry." But I went with it as I kept hard-blinking the tears out of my eyes while trying to keep at a rapid clip. At that point, it became more of a challenge. How fast can I walk while my eyelids squeegeed away the saline. Good job, subconscious!

I'm overwhelmed. No doubt about it. Luckily it's rare that I can fully grasp the grand and reaching scope of the situation. There is some kind of safety valve in my brain that shuts down attempts after a certain period of time. Yet there are occasions even my ever-churning brain can't protect me from. Yesterday he threw me for quite a loop as I was putting away laundry. He called me into the living room to his bed. I was carrying his boxers and various colored socks to put away where they belong in his bathroom. "Remind me to talk to you about socks," he said. Based on his recent confusion, memory problems and hallucinations, I thought we should get to it. "Let's talk about it now," I chirped, smiling down at him. "The purples ones," he said, pointing to the purple knee socks with white horizontal strips and "grippies" on the bottom jumbled in my hands. "What about the purple socks?" I asked. "Those are the ones I want to be cremated in," he replied matter-of-factly. I didn't expect that. And aside from the fact I hate for him to worry about details concerning his own death, I wasn't prepared for how blasé he was about it. But after a phone conversation with a good friend I realized that's something he has every right to be concerned about and to express his wishes about. It wasn't him, it was me. I didn't want to have to be in a position to hear it.



On my walk today, I was hoping to find a photo to take of some beautiful spring landscapes. I saw plenty of them as I walked the tree-lined streets of Ravenswood. But none of them spoke to me. It was here on Lincoln Avenue where I saw this leveled lot that used to be home to a family-owned gas station (Phil & Sons) that I stopped without really thinking. Before I knew it, I was snapping a pic with my iPhone. It spoke to me. There was once something here. And now there is nothing. It's gone, cleared away. Even the cancerous bulldozer remains as an indication of what was responsible for razing what used to belong here. People probably walk past here all the time, and have no idea what used to be here. I hate that.

Step by Step

A friend recently likened dealing with kenan's terminal cancer diagnosis to a staircase. Each change in his condition defines the "new normal". But before this new normal is accepted there is shock, denial, pain, and then acceptance until the next "step" comes and the process is repeated. I thought it was simple and brilliant. It really described my experience. Sometimes these steps occur without any warning. It's more like stumbling down a staircase on roller skates then walking down one. Reaching out to family and friends is akin to grabbing the handrail to steady myself before placing my foot onto the next step.

I wasn't expecting the most recent step. I noticed over the past couple of weeks he was having moments of confusion and occasional hallucinations. As time passed, it seemed to be happening more and more frequently. I don't think it was as obvious to anyone else as it was to me. Not surprisingly, the performer in him pulls it together for company. But as we always want to put our best face on for guests, it's not surprising that the gifted entertainer and generous host in him follows that maxim.

But when it's just the two of us, I've found that he has one foot in my world and one in another--no easy feat for a guy with just one foot. For the most part, our days of intimate and deep conversations appear to be over. And for that, I'm profoundly sad. The loss of banter and in-jokes and non-verbal cues; subtle things that are integral to every relationship--and certainly to mine. It began a mourning process for me I hadn't really expected. And somehow made all of this very "real" for me. The "shock and awe" of seeing this change was difficult. It was like having the emotional carpet yanked out from beneath me; another linchpin in our intimate and uniquely beautiful relationship pulled out. It was destabilizing for me. I began to get my first pangs of "unfairness"--something I hadn't experienced before. I think up until this most recent step, I somehow felt I hadn't lost anything yet.

I still see glimmers of "my" kenny--which delights me to no end. It also hurts, knowing he used to be someone I saw all the time--up until recently. But when I sit next to him and touch his hand or cheek, it is my kenny. When I kiss him and tell him I love him, he says it back to me as he always has. It's still my kenny. When I watch him sleep, it's my kenny who is sawing logs.

The "new" normal, but still "my" kenny.

Blog Day Afternoon

(Ken booked ended by my folks on the left, and his folks on the right.)

It's a funny thing to be gay and fall in love in one's early thirties. Your personality is pretty much fully "baked". You know who you are for the most part, and have an established group of friends. This was the case when I met kenan. We both lived in Chicago, away from our families (coincidentally) so it took quite a while for me to meet all the members of his immediate family, and likewise for him to meet mine. What's even odder, that after almost ten years our sets of parents had never met each other--due mostly to geographical complications.

We'd talked for years about how well our folks would get along, and hoped that it would happen at some point--presumably our wedding or some kind of celebration. Their first meeting occurred in January 2010, and was under less-than-ideal circumstances. Both parents were present at the hospital during kenan's hemipelvecotomy surgery which was the big event that kicked off the most recent occurrence of cancer. On the one hand, it was so wonderful to have the families come together to easily to support us through such a serious situation. On the other hand, kenan wasn't able to witness their meeting or ensuing conversations, and I'm not sure I even remember much of it since I was preoccupied with worry about how he was doing, and wondering how many Xanax I could take without passing out or technically be considered an addict. I recounted the story to kenan as he recovered as best I could. It made him so happy to know I was being looked after by both our parents while he was undergoing surgery.

With his most recent diagnosis and coming home for in-home hospice, we've had the benefit of an incredibly strong support network. Our friends and family have stepped up behind any expectation to help us and support us. Ken's folks came immediately after he got home to stay with us in order to help out and spend time with us. When I speak with my mom she is a rock of support and knows when to discuss the matter at hand, and when to distract me with her razor-sharp humor and ridiculous and humiliating memories from my childhood. I am instrument she plays beautifully.

So it happened that while his folks were in town, mine were also coming to visit! I wish I'd had the time and wherewithal to be excited for days in advance. I did get excited the day of the gathering. I'd carefully crafted a meal (with some help from Costco) of chicken alfredo and spinach salad. The weather wasn't being as cooperative as I would have liked, but it was sunny for the most part. Unfortunately, it was only going to hit the mid-50s. That didn't keep us from getting outside though. When my parents called and said they had arrived, I scurried to collect Ken and get him outside to greet them. The last time they'd seen him was the day we came home from the hospital. He was not very coherent, and I was freaked out beyond measure. I was glad they would get to see the kenan they knew and loved. A short while later my in-laws arrived, and as soon as they entered the living room, both sets of parents got along famously. I would sneak sideways looks at ken as we both enjoyed watching the four of them getting on so famously--especially considering how painfully aware we were of each and every one of their flaws, faults and idiosyncrasies. But it was a great day, and a memory I will always treasure.