This week I stumbled onto a secret I used to know, but which I thought maybe didn’t apply to me anymore since I am less able to do the things I used to do. I am less able to go out of my way for others, was my reasoning. I don’t have the energy, I can’t even shower but once every four days, I’m constantly hovering between a 6 and an 8 on the pain scale, so what do I have left to give to anyone else? What could I possibly have to give to others that was of any value, with brain fog, fatigue, and such tremendous pain and emotional distress.
I stumbled on the secret by accident. I’m have had a particularly bad week on every level, so I wasn’t planning on trying to be the saver of the day for anyone but myself, and even then…
Yesterday everything kind of crystallized into that perfect storm of craziness and incompetence of doctors/insurance and difficulties communicating my needs to others and feeling like maybe I haven’t really learned anything at all from all this searching for myself that I’ve been doing. I was wondering what the point of it all was. How am I going to get through living with an illness, having my medications held up every single month for the most stupid, but constant, oversights on my doctor’s part and absolute asshole-ishness from my insurance company? How am I supposed to live with myself when I have no job, I do not seem to be getting better no matter how hard I work at it, and except for my day to day mindset, nothing symptom-wise has improved this whole stressful, grief-filled year. The day before yesterday, having the ability to control my reaction to the situation just did not seem like enough. I flipped out on Marc, the manager of the pharmacy, a guy I admire and love talking to and a guy I have cried at and yelled at many, many times. He’s a saint. It was nowhere near a mistake he made or had any control over.
I was being unreasonable, childish, horrible. Not the person I want to be. I kept repeating the things other people had told me, that I could pick the prescription up on the 4th or any time after since I was having to take more of them once or twice a week due to extreme stress, flashbacks, and anxiety that feels like I’m dying, that I had been taking only half strength dosage for almost a week because it was a full seven days since it was supposed to be filled according to my prescription. I whined pathetically that I had come in on Saturday and asked them to call the doctor on Monday and make sure that she changed the instructions on the prescription, and no one had done it yet, but he wasn’t even working on Saturday so it wasn’t his fault at all. I yelled a little that the insurance company couldn’t deny my ability to pay out of pocket to pick up a drug I had been legitimately prescribed extra of so that the extra I had already taken (with psychiatrist approval) would not put me short this month. I pleaded that I needed them, instead of asking him if there was anything he could think of that I should do to fix the problem. So instead of being an adult and taking care of the mess with my insurance and psychiatrist by myself, I let the compassionate and extremely helpful pharmacist do all the work. Somehow, magically, in just an hour and a half, Marc fixed everything. When he called me, I had composed myself and was polite and apologetic, but I still felt terrible.
As I thanked him over the phone, I was staring at some red and white stylized snowflake christmas cards that I wasn’t even planning on using this year, and my hand was reaching out to snatch them off the table the second the call ended. I knew I had to thank him in real, concrete words for saving the day by getting me a medicine I depend on to keep my anxiety from spiking through the roof twenty or thirty times a day. Usually I struggle greatly with cards, thank you cards especially, but this time I could barely fit my gratitude on the inside of the card. And when I brought it in, I did not even get to give it to him directly. The reason being that of course he made about ten more phone calls to speak to doctors and insurance companies so other people could get their medicines in the span of time I was in line. People like Marc make dealing with a chronic illness much less terrifying. I just hope my puny little card was some kind of reassurance for him that his compassion and work ethic do not go wasted or unappreciated.
Then the power went out last night, right after the sun went fully down, and the dark is very very dark when you have absolutely no moonlight, no streetlights, howling wind and hurtling tree branches. The young teenage girls across the street came running and screaming up to our door, barefoot in the storm, eyes all huge. They talked over each other that their mom and her boyfriend were at the store about ten minutes away, and that they didn’t have any light, that they were terrified, that their rottweiler was terrified and they had to carry her inside somehow, they they hadn’t ever dealt with anything like this before. We were in the process of trying to find our own lights, so I invited them inside with me and the one light we did have that was easy to find. Eventually my boyfriend dug out the rest of the lights from the camping gear, and we handed out lights and went with them back to their house to find a battery operated lantern and candles in their garage. I have never heard two people so pissed off that the internet was down. Wow. Haha. All that attitude about the online games they couldn’t play and they were afraid to go around any corner in that dark house without one of us right next to them, even with the lantern! We stayed for a half hour or so until mom and boyfriend got through the checkout line, then went to go find our own candle stash and get fast food because cooking wasn’t an option. I’m not proud of the fast food ending, but I am happy that we were there to help out while mom wasn’t home.
Today we woke up and another neighbor had lost huge chunks of roofing and soaked plywood was exposed all along the top of his roof, which surprised me, the roof was newer than all the rest of the houses and no one else lost a single shingle. Anyway, they didn’t notice, and we realized they hadn’t noticed when the forecast started to predict more rain and there was no sign of a tarp or any indication of trying to keep the house from leaking all over the place. We did the neighborly thing and broke the bad news to them with plenty of hours of light and time before the rain hit.
Three random acts of kindness I wasn’t expecting to happen, but I am not prone to just letting people suffer for no reason. When it comes down to it, those situations will always bring out the best in me, and they will always sustain me for longer than the spoons I expend on the random acts of kindness.
So the secret, which isn’t really a secret at all, is that the more of myself I give to others, in return the energy of being helpful will sustain me far longer than my spoons would normally last.
My passion is being needed by others, and I thought that was dead when I got sick. Logic dictated that I give up that part of my life as well. I stopped being that ever-present friend, I stopped returning every bid for attention and drama that was directed at me. I learned to distance myself from all of the things that seemed to drain my energy and in my brain, that would of course include doing things for others when I can’t do things for myself. Not true! I had completely misjudged myself on this area of chronic illness. I can still reach out, I can still be involved, and most of all I can be loving and kind and responsive when for some the world is none of those things.
Chronic pain is almost inevitably isolating in the beginning. Yet, if you come to a place where you can navigate through illness with extra kindness and respect for others, it may also provide a gateway to other possibilities, other avenues in life that were only a vague, wispy haze. My car accident changed my life, certainly, but despite severe and disabling fatigue, pain, cognitive dysfunction, anxiety, plus a long list of other issues, I still care deeply about my friends. I still care about their relationship woes and work stories and successes in school. I will always care. I know that often people think I don’t have energy or time to comfort them in their dark hours or that I will be unable to muster up joy for them in their success. That is simply not true. I can find the greatest joy now in sharing in the happiness of others, and I often feel the greatest depth of sadness for the losses my friends experience.
While I was writing this a friend came over to talk and we found out that he had just been through a deeply saddening breakup. He is someone I admire, and to hear that his partner of several years had “fallen out of love” made me question love itself for a minute. If someone can fall out of love with this awesome guy who was the first person to introduce me to reframing my thoughts in a more constructive way, then what was love all about anyways. This friend is a wonderful, caring person who I met while I was in a dark place.
When we first talked, I was initially so confused by his relentless need to spin my angry thoughts into positives. I even thought he was just minimizing my pain and anger so he didn’t have to deal with it, but over time I realized how valuable it is to hear in action what a positive thought sounds like, especially when my self-talk had been unshakably negative for such a long time. Now of course I can see that he was doing the opposite of ignoring my pain, he was teaching me coping tools, every time I saw him for a year straight I learned something. It takes a special kind of person to care that much that you are willing to say the unpopular thing because it is the right thing to do. His ex will realize what a fool he is for not including our friend in his life path.
I can’t usually make my friends’ pain, emotional or otherwise, disappear, but I remember how much it sometimes helps to be held, and fibro flare up or no, I’m all about powerful hugs and can put up with the pain of a real hug for a friend in need, any time. It’s so worth it to be there for someone and to reflect maybe a little of that positivity they have been shining on my life back at them for a minute. I will not ever give up on expending that energy, no matter how severe the fatigue or the pain get. Not a one of the unexpected acts of kindness that I was allowed to perform this week made my body rebel any worse in the long run, and my heart feels fuller that it has in a long time.
I hope every time that I am presented with the option to be caring and loving, I am able to take that opportunity and be a shoulder for someone to cry on, a hand to rub their back, and a voice to tell them how important they are to others. Or the lantern-finder in a power outage, the overflowing gratitude scrawled across the inside of a thank you card, and the knock on the door that alerts our neighbors to a problem before it becomes a disaster.
There is so much to be gained spiritually from not taking the easy way out, that it often cancels out the amount of energy the more difficult path requires from you, and can even renew you. That is math that I can understand, for once! So even if you think you’re way too tired to go out of your way for someone else, I encourage you to look for every opportunity, small and large, to prove that theory wrong. When you brighten the lives of those around you, some of that light is always reflected back at your own beautiful soul. Nurturing someone else also means nurturing a part of yourself that believes in love, joy, and passion. It’s never a bad decision to be there emotionally for a friend, and remember, even a stranger’s day could be changed completely by a random act of kindness!
<3, good vibes and low pain days to everyone