I have to keep talking about this two-sided coin. I will advocate all day long for autoimmune and neurological patients deserving compassion, respect, and accommodations for their health conditions, and I am going to advocate for all of us to reach for as much as we can grasp in our lives as well. We live in a very strange zone that is unique to our very unusual health profiles. Most healthy people that we encounter are going to have a very difficult time understanding it initially. Some may never “get” the half of it.
I was very invested in watching Steve Irwin’s programs before his tragic death. His vitality and energy, and the sheer joy you could see it sparked in him to interact with nature the way that he did was just so amazing. He took chances that made me cringe at times, but I can’t be any more critical of him than of my favored pro athletes that jump out of airplanes and off of cliffs. Everyone has the opportunity on their life path to select directions that either provide a little more security and safety, or that contain inherent risks while offering broader life experiences. For some people, the former is perfectly acceptable and is their first nature, and there is absolutely nothing wrong with that. For the latter… some of us by nature crave expanding our horizons more, both physically and emotionally. If you don’t need it, then don’t do it. Some of us need it. I believe that for Irwin, it was the same as breathing – he wanted that kind of a life as badly as he needed to breathe. Without it, he wouldn’t have been Steve. For some people, that is a type of death. Their existence is meaningless for them if they cannot do what they love the most. The loss of Irwin touched many people, and it was difficult for me to process. It wasn’t even what most people ever thought would take him out. (Personally, I thought for sure it would be a venomous snake.) It was this one in a million shot of something random and unexpected. The thing to realize is that THAT could happen to any of us. It happens to thousands of people every day, in fact. Not a stringray… but something random and unexpected. Embracing that fact will liberate you.
I bring Irwin up for another reason. I remember him talking about the way these very large reptiles behave when restrained. He demonstrated for cameras at least once that they would reserve up energy and stay still, silent, seemingly complacent for a time. They’re actually building up energy for a thrash, and once they have “recharged” they will make a burst attempt to free themselves. If you’re not prepared to manage it, things can go wrong very quickly. Irwin was no idiot, and he had studied a lifetime in order to do the seemingly insane things that he did. I found it fascinating to listen to his explanation and see it happen, but it also gave me a great analogy years later. Back on this thing of why some autoimmune and neurological patients can’t hold a job, but some of us can still take care of a home, children, etc. or like myself can make trips out to hike, camp, stay physically active for fitness…. mull that over for just a moment. In the Lupus community (and some others), we talk about The Spoon Theory (a story told by Christine Miserandino), and refer to our energy as “spoons” – it’s a set number that we have in hand each day, and each task takes one or more of them away. When you’re out of those “spoons”, you don’t have any more to draw upon. Sometimes you can reserve them up, and that’s what I’m trying to explain to my healthy friends in particular. This also goes out to my fellow autoimmune/neuro patients though, and I want everyone to realize that there ARE ways to manage your energy. I’m not speaking to the home-schooling, home-making, mom with 3 to 5 kids that is devoting all her time to caring for their lives. THAT is YOUR priority and there will come a time when you can do more/something else, and it will be more directly for yourself. You’re just not there yet. What you’re doing right now is perfectly honorable and correct. I’m speaking to those with grown kids, no kids, older kids that can run around with you, those that are single, etc. etc… and your main priority is you. I’ve been asked “How do you do it?” and this is it right here. I have the ability to because it’s only me that I’m responsible for (other than managing the household/finances, and feeding my cat). That’s why I have dedicated myself to awareness and advocacy. I’m stepping out there for the ones that absolutely can’t. I have to use this same stategy though – to reserve up energy, and then make a dash for an activity. I burn a lot doing it too, and there is a recovery period. Sometimes the backlash is worse than others.
There is no way for me to utilize that strategy to hold a job that requires my presence between specific hours, five days a week. I can cancel my own plans, modify my activities and schedule, when I’m the one in charge. An employer won’t accommodate those needs. I hope that makes sense.
This is like the side effects to a beneficial medication. The benefits outweigh the downside. The activity is healthy and the definite right thing for me to do, plus I get the bonus of documentation for blog entries and videos for everyone else to glean from. The side effect however is that I not only deplete myself for anywhere from a day to a week, but I do risk disease flares as well. So the obvious question is going to be, why do I do it? See above. I am doing it for everyone else that absolutely can’t.. and because educating the public AND my community is all-important to me. If I sit in a closed up room and write about nothing but statistics, or video myself talking about all the horrors of the illness without anything encouraging… NO ONE WANTS TO HEAR THAT! lol Not on an ongoing basis. I have promised to be honest (that’s just who I am) but that’s going to be a complete picture. Not everyone is going to like all of the views. Duly noted.
I almost hate underlining the word “can’t” to emphasize it. It’s a word that I have worked very hard to eliminate from my vocabulary, as I was taught by someone with experience in climbing out of a bad prognosis that “can’t” really means “won’t”. If you live a life based on a foundation of being adaptive, can’t doesn’t exist. I do however have to accommodate the reality of someone being in the hospital in organ failure as that does happen. At that point, you’re pretty limited and I get that. (There is my usual disclaimer so don’t anybody yell at me for being insensitive. I’m not.)
My dear friend and supporter Beth recently shared a story that I asked her permission to talk about here. She has a great photo of herself at the Grand Canyon that I just love. Right up front I want to acknowledge that she has been through a far greater nightmare with her illness than I have and could probably just as easily not be here now, but she is a fighter. When people see a photo like that, they may not understand what it took to create that moment. If I’m at the summit of some mountain and I hiked more than half the day to get there, you may not see the moments when I collapsed in the shade to suck down an electrolyte drink, try not to toss my cookies, and pray that I can cool off enough to continue. You didn’t see me creeping around that morning, taking a very hot shower just so I could loosen up my sore and stiff joints enough to get dressed, or how I tossed and turned the night before trying to get enough sleep to be functional. You don’t see all of the massive prep I go through, from applying a high SPF sunblock everywhere – including where any clothing might allow UV through the fabric, to lacing and relacing my boots until they don’t hurt and there is not one tiny wrinkle in my socks, and finding something to eat for breakfast that is sufficient fuel but doesn’t make me more nauseated than I already am in the morning. You don’t know what I go through trying to pack everything I seriously need to care for myself while not putting too much weight in my backpack. You don’t get to see the many times on a trail that I will stop to catch my breath or wait for some random pain to ease up before I can move again. You don’t know about all the motivational things I have to say out loud to hear it with my own ears, willing myself to keep moving – and that all happens during any and all of my training, whether it’s at the gym, here at home, or on the trails I hike. You don’t realize that I have to be careful changing positions from standing or lying down for a while to being upright again, so that my BP dropping 20 to 30 points doesn’t drop me on the ground. It’s part of my day even when all I need to do is go to the grocery store. Every day is a training day for me, no matter how much or little I do. In Beth’s story, we learn that she did not make the ascent to that beautiful vista on her own power and ability alone. I credit her willpower certainly, but let me just share her words regarding the support of her husband and what got her there:
“He has seen me cry myself to sleep because another school year has started and I want so badly to be in the classroom, but I can’t. My body is unreliable. My health is fragile at best and my emotional state isn’t far behind. He knows that the two comments that can take my breath away, steal any happiness I may have at that moment, and kick my feet out from under me are why can’t you work and you don’t look that sick. Those comments are usually followed up with, but I saw pictures of you on Facebook standing on a rock at the Grand Canyon…if you can do that, you can work. They have no inkling of the effort, planning, and afterburn that one of my bucket list events require. They don’t know that he helped me get dressed, drug and carried me up the trail, hoisted me on the rock, climbed down, took the picture (while praying that I didn’t pass out or fall) then hoisted me back down, drug and carried down the trail and then watched me suffer the consequences. All so I could have a moment of awe. The only people in my life that truly know my story are my husband and my children and they are quick to shut anyone down who spews hurtful comments. So, when I read your reflection to my husband he felt, for the first time someone understood. Thank you, Tala, for leading the road of advocacy for invisible illnesses. As you walk forward know that we are behind you.”
I have to immediately add…. thank YOU Beth, for your support. There are days when I feel down, frustrated, and am uncertain how much difference my campaign is making, or will… When someone tells me that my words were meaningful, it helps keep me on track. It has been said to me a few times that spouses often experience the enormity of what we are going through in their own way, and they do see and hear the negative reactions – those comments like, “Why can’t she work?” I know this has been said about me behind my back far more than it should be. Some of my “friends” that I have known for around 10 to 20 yrs should mind their words and attitudes better. They don’t seem to realize that I always find out – ALWAYS. I may not say anything but I know about it, and their attempt to cause dissension in my household is what makes me place them at arm’s length. When they start bothering to actually learn something about what my daily life is like, then they can ask that kind of a question. While they are simply sitting back, judging what they don’t care enough to educate themselves on, they can zip it as far as I’m concerned. We are all capable of putting our best face forward for a few hours, and we do it because it’s nice to be treated like an ordinary individual for some event or activity. A real friend is the one that realizes that when it’s over, your evening.. and the next day… and next… will be anything but ordinary. A real friend bothers to ask you how you are doing in that time frame and listens to the answer. I have very few of those. Most of them live with the same illnesses that I do. Our goal is to capture that sort of understanding and compassion from people outside our community as well. Our goal is to help them understand that these “moments” are necessary for us to not lose our minds entirely and simply give up… but they come with a heavy price tag. I said in another blog entry… and I’ll say it again here… if a cancer patient had goals and aspirations, people would applaud them. They would be cheered on for their courage and focus to get out and still participate in life. That is treated as heroic and exemplary. When one of US steps out the door for anything but a Dr appointment? All hell breaks loose. Suddenly we can’t possibly be “that sick”.
The message autoimmune and neuro patients are fed is that we have to stay in the house and pine away, and we are not fit for human interaction or physical activity… or if we do go out, then there is nothing wrong with us at all. That is a ridiculously black and white way to look at our situation and it is completely unrealistic. I don’t exactly know why it is that cancer patients have garnered such exclusive empathy from the entire country, but it’s wearing thin on me. Lupus and other autoimmune diseases DO kill people every day. While it is not classed anymore as being technically “terminal”, barring certain complications and combinations of specific comorbid conditions… it is still a very serious illness. I have had friends die every year. Tidbit of knowledge: Lupus is never listed as the Cause of Death on a certificate. It is always a complication like heart disease (which I already have), or kidney failure. It’s not helpful that people don’t understand that Lupus was still the causative factor. That unreasonably reduces the urgency of our cause.
*** It also creates two problems. The first is that there is animosity between support and awareness campaigns (they all matter, so that shouldn’t happen). The second is that no one has a clue how to respond to us. There is a lot of misinformation out there. The most basic important facts to understand are that Lupus is absolutely incurable, is not an immediate death sentence but can and does kill, it is NOT communicable, and it is mostly invisible and manifests uniquely patient to patient.
Back to that two-sided coin. I have to spend time both encouraging my fellow Lupies to get out and live, and explaining to others that it can seriously limit the time that we even have to do those things. In my head sometimes I can see a timer ticking, and it’s something that I can’t get around. It’s like that old 60 Minutes show’s stopwatch. I am acutely aware that the number of years that I can do the things I really want to do is probably a lot shorter than it would be if I did not have these cards dealt in my reality. How long it takes me to train for an outdoor sport activity is extended as well… so I am constantly fighting the clock in my life. Add to it that a simple head cold takes me a solid month to recover from, and the effects can linger beyond that. My immune system doesn’t know when to stop fighting. It’s exhausting.
To my healthy friends I would say this… I have to work harder than you, longer than you, to get near the same results. All the while I am headed towards a cut-off date for being able to do that thing that I am training so hard to achieve. Can you even imagine how frustrating that is? I want to hike well-known trails and summit a few peaks. I want to skydive. I want to travel. In 2 more years, I will be 50 years old. That comes with enough challenges WITHOUT Lupus and heart disease. Now do you understand why asking for support is so important? Now do you understand at all why I am absent for long periods of time? Why all my energy has to go into taking care of me? Why I avoid you like the literal plague if you have a head cold? My choices are:
1. Stay at home and be in pain and check nothing off my bucket list while wasting away.
2. Start checking items off my list and live in spite of the pain.
Meanwhile… you don’t get to have an opinion about how my household is managing the situation. If you want to pay some of my medical bills, you might count for something. I don’t see anybody stepping up. In fact, until you actually ask me about my illness and learn something, you’re not stepping up.
To those that have… and there are a few… THANK YOU. I deeply, avidly, appreciate every single individual that has been kind to me, and has been a real friend to me over the years. You’re on a short list.
If you have never checked out my YouTube videos, you really should. I started a series of them called The Price We Pay, and it is an attempt to let you in on what it takes for me to reach goals. I am working on painting a more complete picture for everyone that is not inside the community and doesn’t live with it. I am apparently also offering some solace to the spouses and family of people that do live with it because they have someone in their life that is ill. Beth’s words struck a nerve – in a good way – for me, and I broke down and sobbed. In trying to read it back out loud to someone else, I couldn’t stop crying. Most of us that have made the effort to achieve something greater have kept the process very quiet, fearing the criticism and lack of understanding that was sure to show it’s ugly head. Reading words such as hers lets me know that I am not alone. Not in the motivation. Not in the desires. Not in the process. Not in the pain. Not in the doubts and fears. Not in the end results.
My closest circle consists of the people that have shown me the same determination and sincerity I read in her words. I won’t out who it is until she lets me know it is okay to say something publically, but I have asked a friend that also hikes if she would like to join me for Half Dome in 2017. I have seen her capability and I know that she can be trusted – both to be ready if she goes, and to know when to say where her limits are if she hits them. I have to have a LOT of confidence in you to make that offer. When I extended it to her recently, she was wise enough to state that things could change. I of course acknowledge that, but I have a lot of excitement and hope at the idea that she will be able to follow through and be there with me.
Find your starting point, find your center, and find your purpose. I promise that you have one. Everyone does. If activity for you is chair yoga, stretches to stay flexible, and an evening walk to keep your circulation healthier, then that’s your goal today. Not everyone is up for summiting peaks. Maybe someone CAN be up for it… but they’re not there yet. When I started out in 2011 after my heart condition diagnosis, all I could do was walk to the end of the block and back. That is what I did… until I could do more… and then more. You have to start somewhere. That doesn’t speak to where your end goal is either. You still have to start. That is thriving – doing what you are able to do, and looking for ways to expand it a little at a time. No one bounces from unable to stand directly to summiting a peak. No one. I’ve been working at getting to where I am now for TEN YEARS. Guess what? I’ve made progress. You can too. 🙂