On Being a Caretaker

At the 2017 EDS Global Learning Conference in Las Vegas, I eavesdropped on a session about being a caretaker of someone with Ehlers-Danlos. I would not want to do it. It would get away from me if I could.

What did I hear? Being a caretaker to a chronically, hopelessly ill person is complicated. It is draining, draining, draining, draining. To love someone so needy and so sick, that is a drag.

Common problem: the EDSer won’t do what is best for herself, for her own medical care, and instead makes nagging to do it the caretaker’s job, too. Yikes! That is a fast way to burn out your caretaker. 

What about taking care of a sick child? How hard to push him? How much to coddle him? Complicated and perilous terrain. 

These caretakers were left feeling like they weren’t doing enough, or not doing it well enough. That made me sad.

My Cluster B parents all but ignored the problems of their sick children. Hey, that’s an option! We got medical care when they were in the mood, which was not often. They did not bother themselves with getting involved, so that saved them a lot of time and energy for what really mattered: pitting us against each other, getting a thrill watching us fight over crumbs of affection (and also basic life necessities), rampaging midnight violent fights for which they liked an audience. Bursting into our rooms while we were asleep to smash our things, or make us take sides. We never talked about that in the morning, not even with each other. Our broken things were never replaced. Rollicking good times.

I am not mad at my parents because that is who they were. Short of the humiliation of getting arrested, which sadly never happened, there was no need for them to exert self-control. I think that was the happiest they ever were in their lives.

I am furious at everyone who did not stop it.

But who even cares now. Ehlers-Danlos is worse.

When doctors recommended crazy orthopedic surgeries for me when I was 14 years old, with no diagnosis or attempt to explain my disabling pain and fatigue, my inability to function, the decisions were mine and mine alone. I was not quick to catch on that I was in training to be a Professional Patient. I did not know how different I was because I had always been sick. I just kept getting worse.

My parents never expressed an appropriate level of concern for any of my problems, as they were very busy stimulating themselves with their mad love-hate affair, and that was my life. I was too sick to notice how other kids lived, to notice what they got. Besides it was dangerous to think thoughts like that in our family. Don’t let that cognitive dissonance crack – that is all the security you have.

In bed most of the time I was not at school, withdrawn, in pain, and oh so fearful of the physical fragility I could not describe, childhood medical neglect is a significant part of my life story. That is one way to treat your sick children, which I did not mention at the EDS Conference, because no one would have appreciated that input, and these are things I do not discuss. The day I never saw my parents again was a great day of my life.

There have been many thousands of great days in my life now.

My life support machine.

Back home after the conference, I asked Mr. Pennington if it was draining to manage me when I was so disabled and so sick. That had been our lives for years and years.

He said, “Yes, but it was also replenishing. You were so nice to me.” 

The truth is we both grew up ignored, neglected and on our own very young, so for both of us, to have someone else to care about and to be needed was kind of awesome. So many people have so much love and help that it does not stand out for them as something special.

I had a good time, too, even in too much pain to live and no quality of life. Those horrible years were very special because for the first time in my life, someone was nice to me and took care of me. I wish I had been well, and out making bad life decisions along with everyone else during my 20s and 30s, but to be needed and cared for by a volunteer who did not owe me—that was quite something to have. Like my on-going platonic love affair with Dr. Plance, I would not trade those experiences.

Mr. Pennington and I lived in our bubble of co-dependent bliss. Discussing my hopelessness, we did not do. We blocked out the world. We had a lot of fun together, in spite of my unendurable physical agony. I suppose people become this way when someone has a terminal diagnosis. You really live.

Mr. Pennington helped me through my worst pain episodes, which were frequent, and usually at night. Sleep deprivation got him, too. I would try to manage on my own. I would not wake him until I could not take it anymore, just up to the point when I was ready to jump from the window of our penthouse apartment, which is something I simply would never do. It is just not my style.

There was a stretch of years when every night after dinner I wept for my physical pain and sadness, how another day of my life had gone by when I could do nothing except endure. He just sat there. He is not much of a talker.

No one else in our lives knew how sick I was or the drugs I was on. I didn’t look sick. I just seemed whiny. So funny to look back on that. What a strange way to live. Truly horrifying to think of now.

Watching someone suffer while not being able to do much for them is torture. But we accepted the unspoken truth that he could never do anything but comfort me a little. There was no saving me. Maybe that is something all of you caretakers should remember: just give up.

Mr. Pennington likes his life, so he could endure my problems. He was something in the world that he valued, other than being my caretaker. He always had a place to go to, to have a break and to leave my misery behind. Caretakers need that.

Mr. Pennington was never involved with my medical career, so that spared him a lot of caretaker burden. I always navigated my medical appointments alone. There was a time I was resentful about that. It would have been nice to have had some help. I could barely drive myself, I was so tired. But looking back, that was the best way.

Doctors have a hard enough time dealing with someone they cannot help. It is an emotional burden on them. They do not need the family ambush. It will not help them do a better job if they have deal with an upset husband. I do not even burden them with my tears. It is not their fault I was born sick. It is not their fault my disease is untreatable. 

By going alone, I gradually learned how to get along with doctors, and how to get the best out of them. It is better as a solo job, at least if you are me. Other people get in the way of my appointments. Sometimes I refuse to let the shadow in on my appointment, but I might pull a joint backward to raise awareness. If the doctor has to impress a student, that takes attention away from me. Would any of them be so honest if someone else were there to eavesdrop? No.

Yes, best that Mr. Pennington went to work instead of taking me on my medical rounds.

What happens when the caretaker is no longer needed?

I got so much better that Mr. Carekater lost his job, the job taking care of me, not his real world job.

Without constant EDS crises to get me through, he was lost. We both were. What is this relationship even about? Do we have anything in common? How do we even, like, relate to each other now?

I had to find myself. Who am I now that I am un-disabled, now only a kinda sick person, who can do a lot on her own. That is an existential crisis, an on-going project. A solo project.

No one talks about it, but...

Break ups happen when someone gets well.

Break ups happen when someone gets off drugs.

Two strikes against us.

Me: Please get a life. I am sorry but I have held you back.

Me: I want to deal with my pain alone. Please stop hovering. I want to be independent. I am sick of needing you.

Me: I did not know I had a personality until I started feeling better from all that injected vitamin C. I do not know if I would have married you if I had not been so sick.

Him: Can I get you a drink?