Better things

“We could do this all day”, I said breathlessly as I kissed her neck.
“All day?” she whispered. “One of us has to work.”
Just like that, as BB King once lamented, the thrill is gone. Reality comes a knocking.

It was a glimpse (my choice of terms), a semi-frequent occasion where we dare to look at a life together. A life where she is free from her abusive husband and I can be with her. A life where I was strong enough physically and financially to support us. We would have our own place. We’d watch movies curled up on the sofa with our dog. We would go places and do things as a couple.

Today, she is still married. I believe in my heart that she is doing everything she can to leave him. Even if I didn’t believe her, it’s not up to me in any of this.
Me, I forgot during that lovely glimpse, that I am NOT physically or financially secure. At all. I’m on disability living with my mother. In addition, I’m pretty banged up physically so working is out of the question.

Still, hope prevails. We’re good together. We have chemistry. We have the same dreams and the same nightmares. We both want one thing. Better. She deserves better and she makes me better. Maybe we both deserve better.

one for the ages

This summer truly has been one for ages weather-wise. In NH we have witnessed record heat and unseasonably cold days. We have had record droughts followed by record rain fall. And this all in the month of July. The old adage is true, if you don’t like New England weather stick around a minute, it will change.

I feel really terrible for the 75% of my neighborhood, and by extension every weekender in New England. It’s rained almost every weekend. If I was one of those poor bastards who slaved away to pay for a second home only to spend each hard-earned weekend under an umbrella, I would be pissed.
Yes, I know you can’t get mad about the weather. But it still sucks.

I have a little side business that I’m trying to get off the ground. I detail cars. What started out to be a few here and there has morphed into a pretty steady flow of work. Only problem is that I work out of my driveway. 3 conditions make my job difficult; cold, extreme heat and rain. And that’s all we’ve had lately.

Consequently, I have been watching the weather app on my phone fanatically. I only wish that it was accurate. We have lake/mountain effect weather here. The weather patterns are fairly localized and are characterized by sudden change. The weather apps around here tend to err on the side of caution and predict some rain nearly every day. This makes life maddening when you are trying to schedule work. Sometimes I either fail to schedule a job or end up canceling only to have it be a beautiful day after all. Lost $$$$$$$$. Fuck.

Today, I looked out of the window of the dialysis clinic and it was pouring. I texted today’s appt asking her what her thoughts were. We agreed to reschedule. It ended up being a beauty. But hot.
Too hot.
I really can’t work in this heat.

Most of my customers know that I am a dialysis patient. As my network grows and I pick up people in different towns I suppose it becomes less common knowledge and I try not to bring it up. But when it comes to canceling a job over health concerns I’ve learned to err on the side of caution and I no longer care if I may appear to be a weather-related pussy. I have to be careful.

With 90’s predicted for the rest of the week I have already reached out to my scheduled jobs and rescheduled. Not one person cared. They get it.

I wish I could be as easy on myself as they are. Just another entry in a long line of instances in which I slowly come to grips with the fact that I am disabled, like it or not.

Slow recovery

I’ve developed a new habit of late. I like to go out to breakfast after Dialysis treatments.
Before Covid, I occasionally frequented a small but bustling diner named Bea’s Place. I really got sucked in by the great menu selections of comfort foods (breakfast and lunch only), the friendly staff and the normalcy and routine aspect of it.

After treatments I am almost always ravenous. I don’t eat much the night before a treatment because I obsess about my weigh-in. I don’t eat or drink anything pre-treatment for the same reason and because bathroom breaks are very inconvenient at the clinic. You have to have the needles tied off, pause the machine and it is a lot of work for the technicians. So by the time I’m done I’m hungry. Bea’s is not only down the street and as I said, the food is delicious.

Covid did not spare Bea’s. Shortly after the lockdowns, Bea’s shuttered their doors. I checked their door periodically for announcements of reopening but saw none. For a year this continued and I more than once openly lamented the loss of the place. As Americans, we have all seen the trillions of dollars of destruction economically as so many businesses, even ones considered “bulletproof” such as restaurants and bars closed their doors for good. I naturally assumed the worst.

Then one day I saw the cars parked in front. Sure enough, after a year they had reopened. Wishing to feel normal and wanting to put the whole Covid mess behind me in a meaningful way I began to frequent Bea’s twice a week.

I sit at the counter. It is where most singles are directed. I never liked going to a restaurant alone but breakfast is different. I’m less insecure about being alone, my need for caffeine and sustenance trumps appearances. Usually I find myself with a buffer of an empty seat on one side of me. Today, I was not so lucky. The place was jumping.
I like to be alone with my thoughts when I have breakfast but occasionally I get into a conversation. Today was one of those days. An elderly woman whose wrinkles wove a tapestry of unhappiness felt compelled to tell me about her life of late. I listened patiently as she told of out of work children, fear of catching the virus, perhaps most vividly she talked of the loneliness.

It occurred to me as I was finishing up that we have yet to tap the surface on the real impact on people by Covid. I have long suspected that forced isolation on essentially social creatures (humans) has caused damage that has yet to fully manifest itself in our society. There are some genuinely lonely people out there. Yes, I was eating alone also. But I was going home to someone, in addition to a crazy friendly dog, with a huge network of friends to reach out to by phone if necessary. I don’t think my new friend Brenda had any of that.

When the waitress took my plate I asked her for Brenda’s check. She obliged with a smile. I paid them both. By the time Brenda realized what had happened I was standing and putting on my coat.
“Why did you do that?”, she asked me. “I mean, thank you.”
“Why not?”, I replied. “Have a great day”, I said as I left.

I’ve said it before. Nobody can help everyone. But we can all help somebody. I’m not going to presume that my small gesture today will help her in any real way. We have yet to see the full effects of Covid on our previous way of life, but I fear that the pricetag on the isolation and fear is one that we are unprepared to pay.

showing up

One of the hardest things about having a chronic disease is making plans. You accept invitations reluctantly. It’s not that you don’t want to attend, in fact you are intrigued by how much fun it could be, but the fact is you just don’t know how you will feel the day of.

This is what I have been up against lately.

I am a very busy guy despite being disabled. I volunteer quite a bit. As Master of my Masonic Lodge I’m a very active Freemason in our many charitable endeavors. I have a small side business detailing cars that has supplemented my disability $ nicely and that can be as many as 4 days per week. I manage to juggle all of these things despite my health struggles. I occasionally reschedule things and sometimes outright cancel, but I get it done.
Just don’t ask me to make plans. There, despite my penchant for not breaking promises, I make no guarantees.

It’s an old cliche’, “life is about showing up.” In a nutshell, your attendance naturally implies a positive outcome. Chronic illness does not support this. Sometimes showing up is the worse thing that you can do. If it falls on one of those “listen to your body” days and you decide to push it and ignore the signs I assure you that the price to be paid is not worth it. So how do you know if the event you just agreed to attend won’t fall on one of those days?
You don’t.
As if I’m not neurotic enough, need I add the additional burden of guilt to the existing pile?

I pride myself in keeping my word. If I say that I want to do something I genuinely mean it. Unfortunately it’s a matter of the mind being eager but the body not being able. Some situations are less stressful than others. Many events that I get invited to are functions such as dinners and weddings, those are easier to miss because my attendance is not critical. But at many events my attendance is expected as a volunteer, often I am called on to lead. I will show up at those events 9 out of 10 times. Despite possibly feeling miserable. If I do show up, I will give the expected effort and I will make the most of the experience.
But I’ll pay for it the next day. It has happened multiple times and I have finally learned to take it seriously.

I’ve been declining more and more. The last few occasions I have been invited to I ended up canceling. One was a poker game, which I love, at my buddy Jeff’s house. He really wanted me to go, and I really wanted to go also, but day of I felt so off that I called and canceled. He understood, but it still bothered me. Yesterday I canceled on a motorcycle ride, which I almost never do, because in my sleep-deprived state I felt wouldn’t be safe.
It’s starting to be a trend. The only answer is to not accept any invites and make zero plans. I need every ounce of energy I have to tend to the commitments in the upcoming year as I lead my lodge as Master for another year. It is a monster commitment that I will be lucky to complete as it is.

I don’t know where to go from here. I suppose my good friends know better and don’t hold it against me if I don’t show. I’ve told some of them about this and they get it. I think it’s This all plays into a recent phase in which I fear deterioration above all else. I worry about my leg strength with relation to how well I can handle the Harley. I worry about my ability to do side work for extra money. I worry about my illness taking the ability to do those things that make me feel normal. I suppose I worry that I will stop getting invited to things.

One thing I do know, the situation is going to get worse before it gets better.