Let me tell you a little story: When I was in my early twenties, I met and started dating the man that was one of the best and longest relationships of my life. Let’s call him Hal. Hal was a very special person; he was kind, loving, handsome, thoughtful, intelligent, humorous, and so much fun. Hal was also very unique in that from age fourteen to age twenty-nine he was the main caregiver for his Mom who suffered from advanced multiple sclerosis (MS). Why did this pattern end when he was twenty-nine? That was when she died. Absolutely amazing! Hal was pretty much a super hero in my mind.
This whole concept really blew me away when he told me. So much responsibility, so much sadness, such a terrible thing for him not only to witness, but to be the main caregiver, and when it ended who was there to tell him that the feeling of relief didn’t make him a terrible person. By that time she was suffering so much they had her on the morphine pump and everything was a struggle. It was time, but since he was the responsible one all this time, the lack of guidance left him with so much more than grief when she died. The whole thing still breaks my heart and I wasn’t there and had nothing to do with it. I only witnessed the aftermath. Just take a minute and let that sink in. Hal missed out on all the rebellious years where you fight for, and gain your independence and then his twenties where you go out into the world for the first time and find out what you are made of and who you really are. I would wager that those are the most important years in a person’s life for fundamental personal growth. The body goes through extreme physical and chemical changes, the mind also grows and expands taking in the true size and variations across the globe. These are concepts that are hard to wrap your head around no matter your age, but at that age the mind is versatile and able to more easily accept these immense notions.
Hal didn’t spend his teens finding his own feet apart from his parents and authorities. Nor did he spend his twenties discovering the world and his place within it. Like I said; he is a good man and when the rest of his family could no longer watch his mother suffer he stayed and cared for her during years when it should have been the other way around. He managed all of her care from medications to feeding to dressing and bathroom alone. Not really something you can see a fourteen year old doing, but like I said, he is special.
Hal was five years older than me when we started dating, placing him firmly in his thirties and as far as I was concerned knowledgeable enough about the world and the people in it not to make the mistakes that he inevitably did. Fortunately, it took no time for me to do the math; Hal missed out some of the most important formative years in his life and accordingly honestly didn’t know any better when he made choices that were painful to me. So, I had some choices of my own to make. I either had to take the brunt of his learning curve knowing he really didn’t know any better, or leave and let someone else bear that cross.
I chose to stay. What can I say, I loved him, I was in love with him, and for all the little hurts in those first two years it would have been more painful to be apart from him. We were together over eight years and pretty damn happy too. We found our own rhythm of things we liked to share and things we did by ourselves and everyone was satisfied, especially when he brought me lunch at work some days, before he headed to work himself. Then my health started to deteriorate.
Sweet story, right? Well, it lacks a happily ever after. When my health first started to turn it was this sharp awful pain in my abdomen. I went to doctor after doctor and had multiple female internal exams and even ultra sounds each one coming back normal and each and every time I cried harder and longer into Hal’s shoulder. He would hug me and rub my back or pet my hair and murmur reassuring things until I wore myself out. This was the beginning, I believed his words, we would find the problem, things would get better, and life would go back to normal. I remember the days when illness was finite.
Unfortunately this illness had no end, in fact, it kept on getting worse and worse and I just didn’t know what to do. I was in excruciating pain most of the time and pain alters us both physically and mentally. When you are in chronic pain, the constant pain signals hog the bandwidth to your brain making it hard for your brain to receive or process any other information. It has a particularly large impact on logic, rational thinking and control of emotion.
I didn’t start researching the effects of chronic pain until this year. I’ve been dealing with it since 2007. Why I never looked before, I’ll never know. It would have been helpful. I honestly thought I was just going crazy. I’ve always been sensitive, meaning I do get hurt easily, but I’m also rational, meaning that I’m usually able to figure out whether it was just carelessness, a mistake, or more to do with them. I learned very early on that very rarely does anyone do or say anything that is meant to hurt you. Sorting out the intent and or motivation makes the hurt go away. It was that easy, but I couldn’t do it any more. On top of that I took every freakin thing personally. Everything hurt mentally and physically and I couldn’t logic my way out of a paper bag. I was sure I had lost my mind.
Then I thought of Hal and how much caring for his Mom all those years had impacted not only him for the rest of his life (it’s not exactly something you can catch up on) but also everyone he has already or will come in contact with in the future. I’m not saying either one of them did anything wrong, I definitely am not saying or even thinking that. I’m thinking about the ripples we make. Those first couple of years with Hal were very painful for me and I’m sure they were rough on him too and I know he would never hurt anyone on purpose he just never had a chance to learn these things. I was still with him when my health really went sideways and I didn’t want him wasting any more of his life care giving and I knew he would. His heart was so big. If my ship was going down I was getting everyone else into a freaking life boat.
I was no longer the person all the people who loved me expected me to be. I was not easy going, I was not rational, I no longer found the world around me so amusing, and I believed myself to be terrible company. I was quiet, withdrawn, the meds made me stupid and sleepy, my memory went back ten seconds, the pain made me angry and short tempered, as a companion, I sucked, big time. On top of it I was completely overwhelmed with holding myself physically together and figuring out what was wrong with me. So I could get better and keep my life together just enough so when I gain my health I can hit the ground running right back to life as I knew it. Simple, right?
Yeah, not so much. Knowing all this, I isolated myself. Being in so much pain, with my health sideways, and my brain alternately turning cart wheels or writing suicide notes I didn’t want to drag anyone down with me. My friends are wonderful people. These are the people out there in the world with the giant brains making a difference and then coming home and sharing food and affection with all their loved ones. These are the people of which you wish this world was made. Amazing humans, just sayin.
I was miserable and lost and lonely and misunderstood and for every doctor I saw I received some variation of feedback that I was either crazy or trying to deceive them. Crazy? That is possible on some level but not what they were suggesting. Lying—NO. Someone, just figure it out and let me have a life. Geeze. Do doctors really get so many people that are hypochondriacs that it is the more obvious and likely diagnosis than the possibility that the problem is something that doesn’t immediately appear on a scan or some blood work?
Well, now life has well and truly come apart, but I’m still learning. I started writing as a form of therapy, a way to learn and grow, a way to start communicating again, and a way to find my sense of humor again. On all levels it has worked, but there was a surprising addition, both readers I don’t know and my friends and family are giving me feedback. It has become abundantly clear to me that even though I backed off and tried to place a wall between myself and my loved ones they have been pacing on the other side of the wall waiting for me to give them any sort of hint or sign on how they could possibly help. I feel like a total jerk. My intent was to protect, keep this nasty reality far away from their hard earned lives.
Now that I know that isn’t an option, I’ve spent a lot of time trying to think of ways that the people around me could help. Hey, don’t laugh, it is WAY harder than it looks. Most of the people I have spoken to directly would like to wave the magic wand that just makes me all better. Don’t get me wrong, I’m all for the wand theory. However, until someone discovers that particular wand I’m tasked with finding alternatives. So, instead of listing what I think will help, I’ll tell you some things that my friends have done that have made me smile.
When I go visit KT and Chris, KT often bakes me her special recipe banana bread because she knows it is my favorite. I saw a bunch of commercials for Chex Mix and mentioned to Mom we should get some and a week or so later I came into my room to find a giant box of the stuff on my desk. Same thing with a caramel apple, commercial, I’m suckered in, make a comment, it appears. It’s not the food, it’s more like the confirmation that I’m being heard and she is doing this small thing just to make me smile and it works! A while ago Bill and Billie (close friends of the family I have known my whole life) swooped by with the intent of taking me on a picnic by Virginia lake, unfortunately I hadn’t eaten in five days at that point because of some bug. Still, I loved the idea. Before that Billie invited my Mom and I over to watch and old movie that was filmed Reno and have some lunch. She surprised us with a real high tea set up, it was delightful. Also, Billie baked us a delicious apple pie. I’ve never had a pie baked special for me, its more of a side effect of the holidays, but this was random and generous. Neither of them has ever treated me like I’m sick. They let me bow out of things with grace if I have to but when we hang out Bill has a pretty wicked sense of humor that always keeps me on my toes and Billie is one of those people that is thinking about the big picture and asking the unanswerable questions.
All of my friends helped me move and everyone hates moving crap. Those who come help you move and help you move the bodies are your true friends. They really showed me what for by moving all of my furniture and the final odds and ends in an hour and a half. That must be a record. At home my Dad comes in and checks on me every day and asks if I need anything. I usually don’t, or at least nothing he can find, (like my health) but I appreciate the fact that he is doing the only thing he can do. It is also quite lovely that now that I’m in Reno my Mom can help me out with the juggling of doctors and medication. Having a prescription just appear is total magic. Keeping doctors, appointments, prescriptions, tests, results, bills, and records organized is a full time job. Which is very hard to do when you don’t feel well.
Honestly, these days my needs are pretty basic. I enjoy the company of the people I love the most. I just ask for a little in terms of patience with my physical limitations and my limited energy. A day with me will no longer involve roller coasters and dance clubs, sadly. Still my humor is returning even more twisted than before, which is, shall we say, extremely dangerous or pure unadulterated fun. You decide.