I have a pattern. Stress, stress, stress, relief, immune collapse. I did it for years at school. Ten minutes after a final was over, instant cold.
I have been so happy about looking for a job and having real possibilities that I totally relaxed, and got a cold a couple days ago. It is just a head cold. So my nose is stuffed up. Clogged sinuses are giving me a chronic, low-grade headache. Ugh,
This is a “summer cold” because it is 90 degrees, day after day. Tell me there’s no global warning. Ha! Denial of climate change is no different than denial of alcoholism or drug addiction. The question is always the same: Just how bad do things need to get to have some acknowledgment that the problem is real? How many hurricanes in one year will it take to wake up some people? Ninety-four degrees in Michigan at the end of September? Are you freaking kidding me? The normal is just barely hitting seventy.
What’s truly weird is how the leaves are changing. It looks like October and feels like July. It’s just wrong.
Honestly, I feel more optimistic than I have in years. Because I really have to work, there’s less guilt. Few people would have a problem with me working after having put my life on hold for Barry for so many years. And I wouldn’t care about their opinions at this point, anyway. I have granted myself a great deal of freedom because I realized no one else was going to. I am reducing my internal chaos levels and ending my need for everyone’s approval is the ultimate in de-cluttering.
I am applying for jobs now. Today, I am applying to be a library worker for the local library chain. I am way over-qualified, but the hours would be perfect. And I’ve worked in a library before.
Barry tries to pretend he is fine–and then he coughs. He sounds horrible. Pretense over.
Today, his health care provider sent a letter to the Social Security Administration saying he is incapable of handling his finances, an understatement. She sent me a copy. In it, she refers to Barry as having end-stage Huntington’s. This is the first time anyone has referred to him as “end-stage”, as far as I know. Somehow, that makes it more real.
My shame comes from not keeping in contact with my references over the past five years since I graduated. I hate dealing with this emotional stupidity. I am fifty and still feel this way? Are you kidding?
What grants me courage is the whole not-giving-a-rat’s-ass from turning fifty and dealing with hell for the past few years. There is nothing any employer can throw at me that can make me go through anything worse than I already have. Once you just don’t care anymore, it is amazing how simple things get. Let Barry pretend. His pretense changes nothing.
I’ve been talking to Career Services at my alma mater, Davenport University. The lady’s name is Cindy Whittum (W). She came back to DU after being gone a few years. When I first went back a couple weeks ago, it was like a mini-reunion. I saw my undergrad adviser and also the librarian. I was happy to see everyone.
I went back a couple days ago for a follow-up regarding my resume. W told me about a possible tutoring opportunity there, budget-dependent, of course. And she told me what happened after I left last time. The librarian went to her, closed the door, and asked if I was looking for employment. Uh, yeah. While at her office Tuesday, W emails the librarian about tutoring or proctoring positions and gets a response while I am still there. No word about tutoring, but she told someone in charge she had someone interested (implying me) in proctoring. Proctoring tests would be perfect for me. Not many hours and I’d get my foot in the door.
I am so excited. I am actually being recommended for various jobs. The librarian remembers how dependable I was when I worked for her. I would do dishes at DU if I could get my foot in the door. I want to work in academia. Always have. When I leave MI, my dream job would be to work at the University of Virginia in Charlottesville. I have felt this way for years. They have a department that researches meditation. How cool is that?
The other thing that I have done is to get Barry one of those emergency buttons in case he falls down while I am running errands or working. He doesn’t need a lot of assistance; mostly he needs to be able to contact someone if he falls, because he has fallen in the past.
Just for a minute a few days ago, I felt the way I used to at school. It was weird. I feel like this is my future. It felt intuitive (which is huge because I am not very intuitive in general). Something is happening.
Hitting fifty is hitting me hard. I know that I have more years behind me than ahead of me.
Part of me is proud of what I have done. I got my first bachelor’s degree when I was 29. I was willing to go back to school when the economy tanked. (Michigan was in a one-state recession before the financial crisis of 2008.) I then got a BBA and then an MBA. I got my MBA while Barry had cancer. I helped him with that. I sold the house on my own. I moved the two of us. I dealt with a gazillion bizarro crises in 2015. I’ve helped Barry be straight and sober since 1988. I’ve had spiritual (mis-)adventures galore. I’ve overcome my need for anyone’s approval.
My panic and sense of determination come from what I haven’t done: a career. Most people my age are eyeing retirement and I feel like I am still preparing to do something when I grow up. But Barry’s health issues have pushed me to make moves in that direction. It no longer matters what shape he is in, how he feels, his opinion, what the insurance company does or doesn’t do, or whatever. I simply do not have the option of watching TV with him for another ten years as he sloooooowly goes downhill from the Huntington’s. I can’t wait until I am sixty to start working. I have been trying to transition him and me as easily as possible, but none of that matters anymore.
I feel very good that I have done everything I can for Barry. I’ve tried to do everything with him he wants to do. We’ve had the important conversations. We’ve made the choices. No one could ever be more prepared than us.
I am now outside my level of control. I’ve made all the preparations I can. Much of what happens from here on is outside my control. Nobody can say I didn’t do what I could
A couple days ago, I went to my alma mater, Davenport University. It was the first time I went to the new building. I was part of the last class to graduate from the crappy campus in 2012. It was a homecoming. I had never been in the new building, but I was instantly comfortable. My old adviser greeted me, as did the librarian I worked with.
I knew the career services lady from my time in the mid-aughts (000s). She is going to reach out in the community to help me find a job. She knows my challenges. I believe I will be working in the next few weeks. I have even notified Michigan Rehab Services and Peckham. The most likely possibilities are office work (especially a support role at Jackson National Life or other maybe a health organization) or tutoring at DU itself. I get the impression I will find as much work as I can stand. The challenge will be limiting my hours to a manageable level to accommodate Barry.
It became real enough to me to order one of those systems for Barry where he can press a button and 911 will respond. I just simply cannot guarantee that I or one of those Brightstar people will be at my apartment when something happens.
I turned fifty this past Wednesday. I feel like I have screwed around enough with my stupid self-esteem/shame issues. My life is now between half and two-thirds over and I no longer have the option of not working. Every cough of Barry’s gives me a tiny feeling of panic.
I get a weekly horoscope reading and this weeks was (in part): “IF YOUR BIRTHDAY IS THIS WEEK: You are at a turning point this year, choosing between who you have been and who you might yet become. This can be a very powerful time in your life, as you are more inclined to take the risks necessary for major change.” Could it be more right?
I feel like a snowball is rolling downhill in my life. It has been unleashed and I am not in control of it. Is this what being “over the hill” is about? My life feeling has gone like this: stuck, stuck, stuck, stuck, panic! I am usually bored or overwhelmed, so, yeah, that sounds about right.
My personal, internal drama regarding Barry is ending.
I have asked him if there is anywhere he wants to go, anything he wants to do, or anyone he wants to see while he has time. He said he wants to see his grandsons Austyn and Drew. Anyone else? Their father, Jeff. I am unsure of my ability to make it happen, given that they live in Algonac, almost in Canada. But all I can do is reach out.
My New-Age-y friend that moved backed to CA always used to ask, “Are you complete?” after people talked. That struck me as odd. Now it feels right. We are going to keep talking until we feel we have said everything we need to say. We will keep coming back over and over until there is some satisfaction, understanding, or whatever.
I feel like, when he dies, I won’t have a lot of regrets. I believe that he is going to keep going slowly downhill, until the aspiration gets seriously infected and then he will last a few weeks and that will be it. I think he can go downhill for maybe another year, if he is lucky and keeps holding on, which would be ugly in terms of his appearance and suffering level, but that is his choice.
My choices are over. I can only try to get his grandsons to come to Lansing once or twice more. None of this is up to me. And I am satisfied with my efforts to make him comfortable. And that’s all there is.
I am annoying myself. My brain is in two places at once.
Barry acts like everything is fine. Part of me does not truly believe I will be working. I have seen absolutely nothing whatsoever change for years. So I feel like I need to prepare for a continuation of the status quo: Barry at home,watching TV and his health slowly declining. No movement.
And then there is the other side of me. I went to Peckham Thursday. I am completely confident they can find something employment-wise for me in the next few weeks. I see a few trees where the leaves are turning already. I am seeing more lumps on Barry’s neck. He has a neurologist appointment in October and a dentist appointment in November. I have a hard time imagining that neither of them is going to notice what’s going on. Things could change quickly.
When it comes to working, part of me is like, “I’ll believe it when I see it.” I even thought about becoming a tutor at my old high school, but I don’t want to screw things up with a place as goal-oriented as Peckham.
Still dealing with the insurance company. I am sure they owe me a boatload of money by now, but I have been too much of a coward to look at all of this and confront them.
Part of me sees signs of change another part of me just thinks the first part is delusional. What will break the tie? It will be interesting to observe what happens.