Extinguished eyes Dismal Fate Who am I To feel so late Call to Heal Blinded toll Who am I Ne'er be whole Fast we toll Neglect done Who am I Just one's son Sleep eludes Tales strung Who am I When the last one rung Battle we must Solo in shame Who am I Just another name
Sometimes, there just is no answer. You wait months and months for a consult, that you dream will magically solve all of your problems, and you walk away defeated. Sometimes there just is no answer.
You put your hopes into a specialist, that is trained, that is a guru, that is the saint in the profession of fixing any and all ailments, and you walk away defeated. Sometimes, there is just no answer.
You do what seems like every test known to man, and sometimes, there is just no answer.
Sometimes you have a diagnosis, for which there is no cure, and sometimes, there is just no answer.
Sometimes in life, there is just no answer. There is no magic potion. There is no magic guru. Nothing.
Sometimes, we just have to live with not having an answer, and build up from there. Make the most out of what we do have. Use what works, and be your own magician for your body. Fix it the best way you can, and find ways to cope. Try not to dwell on the bad, and focus on the good that surrounds you.
There is one answer to all of this. This is the life you were given. Find the light in the darkness. In an essay called ‘Blindness’ that I recently read by ‘Jorge Luis Borges’, he lectured on how the progressive nature of his own blindness, changed his own outlook on life. This man was a writer, who loved reading. His whole world revolved around seeing the written word. Instead of seeing what was being taken away, he chose to see through the darkness and find the light. He wrote, ” A writer, or any man, must believe that whatever happens to him is an instrument; everything has been given for an end. This is even stronger in the case of the artist. Everything that happens, including humiliations, embarrassments, misfortunes, all has been given like clay, like material for one’s art. One must accept it. For this reason I speak in a poem of the ancient food of heroes: Humiliation, unhappiness, discord. Those things are given to us to transform, so that we may make from the miserable circumstances of our lives things that are eternal, or aspire to be so. If a blind man thinks this way, he is saved. Blindness is a gift”.
Whatever affliction you may be suffering from, Chronic illness, Ptsd, Depression, Pain, it doesn’t matter. It doesn’t have to have a name. It just has to be seen as the clay you need to mold. It needs to transform. It needs to show you the path you are meant to be on, and it needs to not take another day from you. You are the artist. You create your life. You may not have control over what you have been given, but you do have control over what perspective you take. You can either mold that clay into one of despair, or you can mold it into one of triumph. You chose.
Sometimes, there is no answer. But you can control your own solution.
I must admit, I had a little help with being inspired for this next blog. I have to give a shout out to my girl Moana, from Disney’s amazing animated movie of the same name, ‘Moana’. Now I won’t confirm or deny that it is quite possible that I am able to recite every single line from the movie, or that I often sing all the songs in shower, and that I usually persuade my daughters to watch that movie over the other ones they may opt for instead. However, it was while we were watching it again, ahem, on repeat, that I was inspired to write. A line In the song “Where you are”, hit me in the gut. It was something I had heard over and over, but it never stuck. Today, it stuck. In the song, her father Chief Tui says:
“There comes a day, when you’re gonna look around, and realize that happiness is where you are, cause every path leads you back to where you are”.
So many of us are caught in this hamster wheel, spinning and spinning, chasing the elusive dream of what other great pleasures we can pin down. When is enough, enough? Well, twelve pairs of jeans aren’t enough, we need that new pair, the ones made from silk that has been spun on sleeping beauties very spindle! Our houses aren’t big enough, we need the one in the country , where we can watch the deer stroll by, while drinking our espresso’s from our super expensive barista machine. We chase more money, we chase better jobs, we chase the perfect body, we chase the perfect children, we are chasing our way through a life that is barren. We are caught up in this web of wistful feelings that we get when we stroll through social media. We assume everyone is happy, and living a better life that we are. We want, and want and want. Yet the more we get, it never seems to be enough does it? But what if you one day you woke up, and realized that you are exactly where you need to be, and what you had is enough?
That is what happened to me
I think it is easy to forget how lucky we are. Every night, I say a prayer with my girls that starts with ” thank for the food in our bellies, and the roof over our head”, because I want them to always remember that it is a privilege to have these things, and to never take it for granted. There is a line in the song ‘Sit down’, by James, that also serves as a reminder:
“If I hadn’t seen such riches, I could live with being poor”
Think about the truth behind that lyric. If you never had to compare your own self, to that of another’s, would you have this need for all these things? Would you be more satisfied with where you are? Growing up in the 80’s or 90’s, all of our photo’s of our vacations, and new outfits, and houses were private. You didn’t have the world to contend with, you had what you had. I have spent years chasing the dream of a better job, more money, more clothes, more property, bigger house, more and more and more. Who hasn’t? It is human nature. There is nothing wrong with dreaming and wanting more for yourself. It is admirable. The problem is, when it starts to take away from your own happiness. When jealousy, or negative emotions take over and it causes depression, or despair, or feelings of inadequacy. If you open up your eyes and look around. Really open them up. Like open up your soul. Sit down and take stock of what you have. Do you have your health? Do you have a roof over your head? Do you have food in your bellies? Do you have loved ones that you can rely on and who are there for you? Do you have a paycheque? Do you have clothes on your back, and shoes on your feet? If you answered yes to all of these, guess what? You are lucky. You are rich. You are blessed. That is all we need. The rest, is just fluff.
Let’s not spend another day blinded by what we don’t have, and instead appreciate what we do have. Every path that you take, has led you to where you are. It is where you need to be, and you are here now. You are breathing, loving, and living. Your life is yours alone to live. Don’t live someone else’s life that you perceive as perfect on social media. That’s their life, this is yours. If you change your perspective, you might just realize how lucky and envious your life really is to someone else out there, that couldn’t answer ‘yes’ to all those questions.
Instead of trying to live a life that isn’t yours, why not take the time to help someone change their life, so that they can answer ‘yes’ one day too. Someone out there is looking at your life, and thinking about how perfect it is. See it though their eyes. Chances are, you will realize, like I did, that I have all I need, and that I have the power to give someone the help they need. Helping others, is way more fulfilling than the fluff we think we need. The world needs more people that want to help. So, take off your shoes and help put someone else into your shoes. Give them a pair of shoes. Help get a roof over their head, or food in their bellies. Even small changes, are meaningful to those that receive them. Will you help change the life of someone out there?
I yearn to go back to the days where my mom would get out that trusted old syrupy bottle of cough syrup from the kitchen cupboard, (the one where the the lid was completely crusted over from some previously dried up medicine), and she would dump a bunch of it on a spoon, and bring it over to where you were lying sick on the couch. Often, I would be all cozied up under warm blanket watching ‘The Price is Right’, or whatever show was on that I usually missed because of being in school. That feeling of being taken care of, and knowing that the medicine would make you feel better, that mom’s can fix anything, is something that miss now that I am the mom of a family, and now that I have a chronic health issue. That one bottle of medicine, in all its syrupy glory, seemed to fix everything. I trusted it. I trusted my mom. I trusted the simplicity.
Things have changed a lot since I was a kid, lying on the couch watching ‘The Price is Right’. As a paramedic I became the fixer. As a mom I became the fixer. As a wife I became the fixer. But who was fixing me? I won’t lie, I still rely on my parents to help fix a lot of things in my life. They are there to help me with the kids, or to keep me company if I am not feeling well and my husband is working. They take me to appts, and they help calm me down. They are still my superhero’s in more way than one. But, there is literally no safer feeling that being 8 years old, lying on the couch, knowing that you don’t have to worry about anything at all, because your parents will make your sickness go away. That is the scary thing about growing up, and being diagnosed with an illness. Your parents just can’t make it go away like they used to. You can’t just drink the syrup and feel better. No amount of watching ‘The Price is Right’ will fix you. The doctors that always seemed to be able to fix every cough you had, now scratch their heads in bewilderment. You feel, alone. You realize that your parents, and doctors, are only human, and don’t always have the answers. Everyone starts to lose their superhero status, and you have to hope for more powerful forces to help you out.
And one day you’ll realizeLyrics from Brantley Gilbert, Song ‘Man that hung the Moon’
I’ve lost my cape, I can’t fly
And I’m only human
And you’ll need more than me
But you know to hit your knees
If I’ve done my job right
You’ll know where to find the man who really hung the moon
It took 2.5 years to get my Postural Tachycardia diagnosis, and it has been 10 plus years of learning how to manage it. I now have something else going on, and the cycle of being shuffled from specialist to specialist, and hospital to hospital, is well underway again. I no longer have a cough that can be cured with medicine. I am a guinea pig spinning on the wheels of a cage in a medical laboratory. The best anyone can do, is to offer up a medicine to ‘see if it works’. I have a history of being sensitive to medications, so being handed a new medication scares the hell out of me. Having a bad reaction to medication, makes you fearful. Some days it takes over 5 days to build up the courage to take the first pill. After taking the first pill, I spend the next 2 hours worried about having an allergic reaction, and then I spend the next day worrying if I will have any side effects. That is only on the low starting dose too! Don’t even get me started on having to bump up the dosage. This is all for a medication that I am taking to “SEE” if it helps.
I am a firm believer of not taking a medication unless I know what it is for, and why I need it. I don’t like the bandaid solutions. What I mean by bandaid, is that I don’t want a medicine to take away my pain without knowing what is causing it. I want to know why I am having the pain, and then I want to fix that. If I need some medicine after I know what the problem is, and this is the fix, then so be it. So I really struggle with taking something that is for management of an ailment that I don’t even have a name for, and no doctor can figure out.
I also dislike the idea that a medication can take months for it to “start’ working. Oh, and during that time you also get to have a whole host of awful side effects. BONUS! When you feel awful all the time to start with, the idea that you will be taking something that will make you feel worse, before you get better….well that is a tough pill to swallow. Literally, and figuratively.
What I want is to reach into my cupboard, pull out that crusted over medicine that fixed everything as a kid, and feel its magic again. I want to take that one spoonful, with no worries, and feel better. I want my mom and dad to fix everything. I want to bound out of the house the next day, feeling rejuvenated. I want a diagnosis. I want my life to revolve around living. My calendar currently revolves around counting down the days till my next specialist appointment, and the disappointment or hope that follows. I want to travel, explore, and work on finding happiness in the smallest of corners. Having answers, and a way to manage something that right now is invisible , makes life possible. I don’t want to be scared anymore. I don’t want to live cornered by the fear of having a flare, or the fear of starting a new medication. That is not living. So I will continue to take the new medications that scare me, and hope for the best. Maybe this time, this one medication, will be the one that helps me turn the corner. The one that allows me to take a seat at the table of life. It’s time to hit my knees, and pray for healing, and pray for life. It’s time that I stop putting the superhero cape on everyone else, and put my own cape on, and become the maitre d of my ownlife. One reservation for life please .
Does diagnosis matter?
I chatted last night with a fellow chronic illness warrior. We covered everything from how we were diagnosed, to how long it took to finally have an answer, and how we felt when the doctor eventually whispered its name to us. But, I had one thought that kept re-generating in my head after we chatted, so simple, yet so complex. What are we doing now that the illness has a name and now that name looms in our bodies all day and all night? That thought festered into, were we relieved? Did having a diagnosis make it easier? What has it really changed? POTS. LUPUS. MS. Did it matter in the end?
It took 2.5 years to get a Pots diagnosis for myself. I am now in limbo with yet another possible autoimmune condition, which has thrown me into a tailspin for the last few years. I am in the middle of the medical web of referrals right now, where I am the lead detective, hunting down whatever leads I get, trying to attach a name to the perp that has alluded me and stolen valuable health hours away from my life. If you were to come over to my house, it would be akin to seeing those forensic cops connecting the yarn from suspect to clue, to yet another alternate suspect. All the yarn connecting to one invisible mug shot. Who are you that has evaded me; I have often whispered. Show yourself! The one thing that I have learned since my initial diagnosis over 10 years ago, is that you have to advocate for your own self. No one else can do that for you. I have always felt that I was doing just that, advocating for myself. But, after my chat last night, I realized I wasn’t. Not even close.
I wasn’t advocating for myself
In the conversation with my fellow warrior last night, we shared a laugh when we discussed the luggage that we both drag around to other places if we go out. I know I touched on this in the blog ” 5 things to know about pots”, but we chatted about how backpacks and heating pads and other essential items had now become a part of our daily wardrobe. My backpack was my lifeline. It held everything I needed to sustain myself throughout my day. Except, it wasn’t true. After our chat, I realized that a majority of these items I end up stuffing into that bag, was needed because I would ultimately end up failing to take care of myself. I was failing to listen to my body. Failing to do what was right for me. I wasn’t packing the right stuff into my bag, because I wasn’t packing the right bag.
Self-advocating doesn’t mean your not self-neglecting
In the traditional sense, I was advocating in front of all my varied doctors and therapists, and who knows how many other professionals I had been to over the years. But outside of that medical diagnostic game, my aim was to give myself a life. Give my girls and husband a great mom and partner. Be a great friend. Be a great daughter. To live to the fullest. To explore. To dine. To wine. To have the clean house. To provide an income. To keep the kids active. To host the best party. To be the one who always says yes to going out. To making others believe that I didn’t have an illness. If they can’t see it, I could hide it. To ultimately paying for it later. Truth. Out of fear of having to make my husband leave a party or evening early I would suffer. Out of fear of my kids not getting enough fresh air, I would stand out in the cold longer and suffer. Out of fear of say no, I would walk longer or farther than I should. Out of fear of being a nuisance, I would sit on the high stool at a restaurant, knowing that my legs dangling down for two hours would hurt me later. Out of fear of looking dumb, I wouldn’t lay down at a friends gathering, when I clearly needed to. I would stand in the sun, knowing my body was overheating with an inability to regulate itself, just so I wouldn’t feel rude leaving a BBQ. It goes on and on. The ending was always the same. I would then, unzip my pack and use it all to try and recover, or I would head to the hospital.
Nobody is asking for you to do all these things
The worst part is, not one person ever put these expectations on me, except myself. I failed myself. For my own egotistical gain, I ignored the fact that I had a condition. I didn’t want it to exist, so I carried on and had the attitude that I would just deal with it later. No one would know, and I would keep up the illusion of someone with her shit together. For what purpose? Would these people really care if they knew how I really felt? The ones I align myself with, all know of my condition, and would be understanding, but I didn’t give anyone the chance. So I chatted with my husband last night, and started owning up to all the times I should of said no. All the times I should have left the party early. All the times, I should have stayed inside, or moved to the shade, or just not cared what other’s thought. I started compiling a list of things that I need to start doing for myself.
How I am planning to change? (A few items off of my list)
- Take 2 cars to events, so I have the option of leaving early without feeling bad about taking that time away from my husband or friend that I am out with. (They would come back with me, but I don’t believe they should always miss out on my account either)
- Don’t go to events in the middle of the day, during the worst heat of the summer. Sounds simple, but I say yes to these events all the time, and I pay for it. Instead, say yes to the events early in the day or later in the evening when the temperature is more manageable.
- Ask for a table with chairs instead of stools.
- Lay down at a cocktail party, and stop giving a shit who has to step over me.
- Stop hosting, and allow myself to be hosted once in a while. (this one is hard for me)
So does diagnosis matter?
So to answer the question, does a diagnosis matter? Yes, it does. It gives you answers. There is relief, but that also comes with fear. Fear at knowing you have to find a way to live with this in your life now. Does it change anything? It can help you manage your symptoms easier, but in the end it is YOU that manages everything. You manage the outlook on your illness. You manage your daily outcome. You manage your thoughts. You manage the life you want to present to the world, and the life you want presented back to you. So stop neglecting yourself. Put yourself first. Trust in your friends and family. The ones that are meant to be in your life will not resent your shortcomings, but embrace them and help you live your life as much as you can. They will allow last minute restaurant changes, or let you sit in the shade while they sweat it out in the sun instead. They will sit with you while you rest your legs, and they will take you home early if you just can’t handle the pain anymore. They don’t need a front. They take you as your are, and that is enough. So I consider this blog, the start of my journey in learning how to not neglect the very thing I demand my doctors find. Me. Do I still need that backpack? Yes, but maybe now it can be a little bit lighter to carry around. Packed properly to sustain me, and not to rescue me.