I Surrender

love, wedding, bridesmaid kissing brideDo you ever think to yourself, what the fuck am I doing with my life and what do I even want?

My views on what is truly important in this life and what makes a person valuable have changed significantly since getting sick. I suppose this shouldn’t surprise me, as it is a message that one will often hear from someone who has gone through a near death experience, a life-altering accident, or terminal or chronic illness.

I never believed that I would be good enough if I couldn’t do everything on my own. It’s one thing to be independent, but its another to believe that you are not a valuable human being if you need help sometimes. I took this to such extremes that I put myself in scenarios where I was the main care-giver, house-keeper, and money-maker, responsible for my partner, his two kids (part-time), and my dog. It never crossed my mind to value what I was sacrificing. I believed that it was exactly what would make me a valuable person. I had people who needed me, and I was willing to do all of this for them because in my mind, that’s what was going to make me good enough.

What it really did was break me. Because while I was willing and sacrificing, it wasn’t appreciated. I was still reminded that without him I’d never make it. That no one would ever love me again if I left him. That if I couldn’t manage my 3 businesses, myself, and take care of him and his children (one with different needs as he’s on the spectrum) and my dog and our home – at 23 years old – he was sure to reinforce my belief that I wasn’t worthy.

What does it even mean to make it? Do you hit a certain number in your bank account and suddenly, you’ve made it? Made it where? To what? Do you get married, make and raise beautiful babies, in your single family home with a yard and a white picket fence and a dog and a mailbox with your family name on it and suddenly you wake up one morning and you’ve arrived?

I’ve been living in the illusion of fear for so long now that I forgot what love was.

Most of what I’ve done in my life has been for this illusion, this image of what I thought my life was supposed to be. I thought being a housewife was supposed to be for people who would be taken for granted in exchange for being able to rely on someone else for income. I thought disability was supposed to be for the dying, the completely disabled, or the lazy. I thought family was supposed to be a burden.

What the actual fuck was I thinking and who taught me that?

I thought that overcoming my endometriosis, depression and anxiety was about being stronger and pushing through, so life gave me panic disorder.

I thought that overcoming my endometriosis, depression, anxiety and panic disorder was about being stronger and pushing through, so life gave me a “new best friend”, who later turned out to be my rapist and gave me PTSD and vestibulodynia.

I thought that overcoming my endometriosis, depression, anxiety, panic disorder, PTSD and vestibulodynia was about being stronger and pushing through, so life gave me a mentally and emotionally abusive boyfriend who I let break me and that’s when I ended up with Lyme and co-infections.

I thought that overcoming my new diagnoses of borrelia burgdorferi, babesia microti, bartonella henslae, ehrlichia chaffeensis, rickettsia, west nile, coxsackie virus, Epstein-barr virus, parvovirus B19, and microplasma pneumonia, was about being stronger and pushing through, so most recently we’ve discovered that I have “latent Epstein-barr virus and persistent Lyme (borrelia burgdorferi) in round body form” with a “Fatigue Severity Scale score of 59 [which] is markedly elevated and consistent of a severe level of fatigue. As I have previously documented, I believe that her severe and persistent level of fatigue justifies her being identified with a disability and that disability is likely to be chronic in the context of her presentations.” (Excerpts from my most recent report from my Governor General Award-Winning Internist in Calgary, AB)

What if none of this was to teach me to be stronger?

What if part of my issue and my blockage in healing is my stubborn mindset stuck on the undying need to be better, to be stronger, to push through, to overcome everything on my own?

What if this was to teach me to give in, to surrender? To stop trying to control every little piece of my life and to give those pieces room to fall into place on their own; to learn to lean on people; to learn how to ask for and, more importantly, how to accept help; to not judge myself or others in their own struggle or coping mechanisms or ways of healing. To give up the image in my mind of what I thought my life was supposed to look like and to instead create a lifestyle that works with what is in the present; to understand that the people who taught me how to think and how to live are also just doing their personal best and they don’t necessarily have it right, or that what is right for them may not be right for me; to take action based solely on what feels right for me instead of letting what I think is right for everyone else impact my decision making; that sometimes the people whom we believe that we need in our lives are not really meant for us at all, and that although it is scary, its okay to let them go.

I have fought my life so hard for so long to keep to the image I thought I was supposed to have, only to now realize that maybe it’s not what I ever truly wanted at all.

This realization is a long time coming yet it also feels very sudden and unexpected. I pray (also new to me), that this is the revelation that gives me the confidence to take action and change the trajectory of my life.

I spent the last 6 days up north with some really beautiful people who make conscious decisions every day to love and support one another. My cousin just got married, and for the past 9 months for the first time in their 8 year relationship she has played the role of a housewife. She cooks for him, cleans for him, makes his lunches and he works his ass off and supports them. And they seem to genuinely make this work, because, get this – they both appreciate the other and everything they do, and they show it! Wow. Why did I not think that was possible?! I genuinely, wholeheartedly believed that that was not a real option for anyone who wanted to be happy or good enough. And I am so grateful to have been proven wrong because it is helping me to see that a lot of the views and beliefs that I have or have had in the past are super fucked up and weird and yet also probably very common.

I am sure that I don’t need to explain how I’ve been proven wrong about my past beliefs about disability.

Probably one of the hardest pieces of this realization is that all I’ve ever truly wanted is a family who is able to show how much they love and appreciate me; how much they value me. A family who wants to spend time with me, even if I am unable to do what they’d normally do. A family who wants to learn how to support me and to teach me how to support them. A family who not only wants to show up for you, but is able to, and does.

Maybe this family doesn’t have to be blood. Maybe it isn’t about the individual at all but about their willingness, ability and commitment to unconditionally love. Maybe, as I’ve witnessed recently, it can be one or two or three people who just commit to being there for one another and allowing each other to show up exactly how they are, however that may be. A few people who truly value one another, exactly as they are, and show it. A few people who never let each other forget how much they are loved. A few people who do the work – for themselves and each other. Maybe family doesn’t have to be a burden; maybe it could be the most beautiful and precious thing you ever have – perhaps its the only thing that is truly real and the only thing a human truly needs.

So this is me, surrendering, asking the Universe to help me trust, and praying that love catches my fall.

Thank you Kai, Cam, Cindy, Dustin, Ken, Brittany and Cheyenne for showing me how you unconditionally love each other and work together to support one another each and every day. Kai and Dustin you have built a beautiful, loving family for yourselves, DNA not required. Thank you both for showing me what love looks and feels like in my body.

Being unwell you will have to comfort others more than they will comfort you.

I don’t know how much longer I can go on like this. No one told me when I got sick that I’d spend more time comforting the people around me than I would being comforted.

Today is no harder than any other, yet I’m at my breaking point. I spent the morning uncontrollably sobbing only to get myself to stop 5 minutes before I had to be at work for the day so I did what I always do – splash some water on my face, plaster on a smile and avoid any questions about how I’m feeling. I don’t know how to tell the people around me that love me and want the best for me that I’m struggling so severely. When I do open up I can tell that it makes people uncomfortable because they don’t know what to say and they want to make it better but they can’t. So instead they tell me how its going to be okay, or throw suggestions at me such as a ketogenic diet or meal planning, as if that is going to be the answer to my problems. The thing is, I know that an anti-inflammatory based diet would help me. I know that meal planning would make my day to day easier. How do I tell these very well-meaning people that I love, that if I could manage a day of meal planning or a new diet plan I would be fucking doing that already.

It’s 8pm and so far today I have eaten a small apple and a nectarine. Not because I didn’t have food with me at work – I roasted vegetables two nights ago to take today – but because I have zero appetite. Other times I will eat that little because I simply don’t have the strength or energy to go grocery shopping or to cook. The fatigue and the pain can become so overwhelming that it takes everything I have to get through the work day and then to spend the weekend sleeping. If I do dare go have some fun on the weekends or spend a day cleaning or meal prepping then I pay for it during the week because I haven’t had enough rest. If I never go have some fun however, I start to feel depressed and my mental health takes a toll. There is no winning right now, not because I have a shitty attitude, but because every little thing is legitimately so damn hard.

Before Lyme I was a fitness coach. I meal planned and prepped every week religiously. I have the skills and the knowledge to do it but back then I never had to think about whether or not I’d have the energy to complete the task, let alone if I’d be able to stomach the food, I just did it. Now each part of that has to be broken down into increments of energy expenditure – make the meal plan, make a grocery list, go grocery shopping, unload groceries, prep food, clean up from cooking, and if I still have enough energy when that is all over then maybe I can even eat what I’ve prepared. If I wasn’t working, which most people in my position are not, then perhaps I could manage this. However, not only have I been told by specialists that it’s completely unreasonable to expect myself to work a full time job or live a full time life, I simply cannot do everything that I am trying to do to keep my head above water and still manage a special diet or anything else on top of it. I am at a point where I am barely even checking my emails or messages because I simply cannot cope with one more tiny minuscule thing on my plate, even if it’s going to help me in the long run. And do you not think that if I could manage literally anything that is going to help me in any way, that I would?!

I go to work, I come home, I try to manage my pain and get some sleep. On the odd day that I do add something to that routine, usually in order to salvage my mental health or to have a clean home or groceries in the fridge, I pay for it in some way later. This is not a life that I would wish upon anybody.

Yesterday a client told me about his trip to the Grand Canyon, 6 days of white water rafting and hiking. That sounds amazing to me and is on my list for when I get better. Although I tried to gently respond with, “definitely when my health gets better!” He told me, “I’m telling you right now, you could do it now.”

Right. Because you know literally nothing about what I experience on a day to day basis, and likely know nothing about Lyme and co-infections, but you’re absolutely right, I look well, and I stand on my feet all day to cut your hair, so I must be well enough to do that. 

Are you fucking kidding me?

I struggle to walk 20 minutes. I can do it now, but for a long time I couldn’t even manage that, and I will pay for it later. On my best days, I struggle to play a couple of innings of beer league slow-pitch on a C-Division team. I am barely managing to work just 4 days a week when I used to work 7, and I’m trying to figure out how I can afford to work even less because my life as it is is not conducive to healing or manageable long term.

I am in pain and severely fatigued every single day, its only a matter of degree.

I do a great job of putting on a smile and pretending everything is okay. I can’t handle hearing everyone’s opinions and suggestions and whatever they’re going to say to make themselves comfortable with the situation that I’m in so instead I just tell everyone that I’m “okay”, “fine”, “good”, or on days like today when I’m really not managing well, “I don’t want to talk about it”. The energy that it takes for me to convince you of how sick I am or how much I’m struggling because it makes you uncomfortable so you feel the need to tell me that it’s fine, only adds to my exhaustion and stress. I never understood before how much of being unwell is about making other people feel comfortable rather than them comforting you.

Someone with chronic illness’s breaking point does not happen suddenly. It is the result of an accumulation of repeatedly not having their needs met, often being denied their basic rights, being told that they’re fine or to just try harder, or “well you look good!” and from trying so hard to live an average life while in so much pain and so sick. And I’m there. I am at that breaking point. If I don’t find some new ways of managing, or get some help around the house or with meals or honestly with anything at all, I will end up in a mental hospital. Trying so hard to manage on my own and live my life this way is unbearable. Staying strong for the people around me because their responses only make me feel worse, is unbearable.

People in my position don’t need you to tell them what they should be doing, they need someone to do it for them. Please, tell me again how even though I’m barely keeping my head above water and can barely cope with what I need to do in order to survive, I should add a whole other thing onto my plate because it’s going to help me in the long run. We can’t! If you’re going to get someone in my position to open up to you about how they’re feeling, please just accept what they’re saying as the truth. Don’t challenge it. If they say they can’t do it, they likely already feel bad enough about not being capable, and don’t need to go into detail to try to convince you of their current lack of ability. What they really need is someone who will let them express how they’re truly doing without questioning it, without trying to convince them that they’re better than they actually are. If you can, offer something that you’d like to do for them to help. If you can’t, then the least you can do is be a compassionate ear and not another stress in their life.

I, as most people are, am hard enough on myself I don’t need you to judge me or be hard on me too. And trust me, I know that it comes from a place of love, but if there was something that I could manage that was going to make my life easier or make me feel better, I’d be fucking doing it.

Weekend in the Woods

& Lyme Prevention Tips

I just had an amazing weekend away at Campbell Bay Music Festival on Mayne Island, BC. It was an incredible weekend spent listening to great music with the most beautiful people on breathtaking farms and in magical forests. Seriously I walked into the field and couldn’t help but think, “these are my people.”. We walked around in bare feet and sat on blankets in both the light of the sun and the moon; we swam in ponds and walked through the woods and sat in the forest. It was everything I love and more (minus the makeshift outhouses!).

For most of my life I have gone on getaways like this and not thought twice about the possibility of ticks. I wouldn’t have even worn bug spray because, in my own words, “the chemicals in that shit have got to be worse for me than anything I could possibly get from a little bug”. Naivety at its finest folks! Of course I can remember hearing the odd thing about ticks and Lyme disease but I honestly just didn’t think that it was a big risk. To this day the only tick I have ever seen in real life is one from my friend’s freezer that she pulled off her dog a couple of months ago – on Mayne Island – so it never used to cross my mind that I would get Lyme disease or that I’d ever been bit by a tick. I thought that if I had been bitten by a tick I would know, because I believed that I would find it lodged under my skin or something gross like that. Oh man, was I ever naive.

It took me a while after finding out the cause of my life-altering health concerns to feel comfortable being barefoot in the grass or to sit in the grass or walk through a forest or to garden. I know some Lyme survivors that are so filled with fear that cannot even walk through a grassy field, they need to take the paths. I am a person who needs nature in my life and I cannot sacrifice my well-being and the healing I receive from nature out of fear of being bit again. Therefore, I had to come to a place of educated awareness and safety rather than my past states of naivety, then fear.

Before living through Lyme I never would have tucked my pants into my socks while hiking, worn bug spray, or even done a proper tick check. I simply didn’t know better.

I know that there are people out there who push the bug spray or the tick checks or the prevention and education of Lyme hard and can come off as being paranoid sometimes. Though I do my best not to be that way, I am guilty of it too and that’s how I know that it stems from genuine fear. Fear that someone else might have to go through the same thing we have. Fear that we could have somehow prevented a friend or family member from going through it if we’d only educated them a little further. Fear, simply as a suffering human being, not wanting another human to suffer in the same excruciating way. I would not wish Lyme and co-infections on anybody.

I know that Lyme can be contracted in backyards and parks in my hometown of Ladner, BC, but when spending a weekend on the Gulf Islands in the woods and farm fields, I took a reasonable amount of precautions. Not because I’m crazy and paranoid or can’t sleep at night for fear of being bit, but because I’m not naive anymore and I understand my risks.

Did I wear socks up to my knees or my pants tucked into them? No. Obviously not. It was a beautiful sunny festival and I wanted to have fun and not look like a total dork. I did however use bug spray every day – the chemical-shit-storm kind with deet, even though I’ve gone almost 100% natural with all of my body and cleaning products. I did sit on a blanket instead of directly on the grass or forest ground. I did do full tick checks each night before bed. I did throw all of my clothing and towels straight into the dryer before they went in the wash or touched anything else in the house. I did vacuum the laundry room where dirt from my clothes fell and could have left poppy-seed sized ticks hiding.

This probably sounds extreme to some people – at least it would have to me pre-Lyme – but it honestly was so easy and has minimized my risk factor significantly. Of course there is always going to be the risk of being re-infected due to missing one, or being bit while at the festival and never finding it, or even of one latching onto me after I got home from within my own yard, but at least I know that I did what I could do to prevent this for myself – especially, but not limited to, during a higher risk situation like this weekend. My memories from this festival can now hopefully continue to be ones of beauty and healing, rather than one of, “I really wish I’d just put on the bug spray”.

Dear Doctors, there’s something you need to understand.

Dear Doctor’s, there’s something you need to understand…

I believed you every single time you misdiagnosed me.

I believed you when you told me I had chronic fatigue syndrome.

I believed you when you told me I had anxiety.

I believed you when you told me I had depression.

I believed you when you told me I had PTSD and Panic Disorder.

I believed you when you told me I had Central Sensitivity Syndrome and that there was no known cause or cure.

I believed that you would have told me if the Lyme testing wasn’t accurate.

I believed that you would have told me if my test came back positive. (Note for the public – did you know that your GP is legally allowed to tell you that your Lyme test came back negative when it came back positive? I didn’t.)

I believed that you had my best interest at heart, not a political or private agenda.

I believed you had my back.

It’s funny to me, that after all this time of advocating in the mental health world and understanding how many gaps there are within the system, that it hadn’t crossed my mind that those gaps are in the general medical system as well.

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Self-care is a septum piercing.

So today I did a thing – to my face – against all my friend’s and family’s advice (besides 2) – and it made me think about self-care.

I have seen a flooding of internet posts on self-care in the recent months, even more so in the last week with the recent tragic Hollywood deaths by suicide, as well as many equally as tragic deaths by suicide that happen every single day to people’s families and friends and coworkers and lovers all around the world. But did you know that the media isn’t recommended to talk about suicides because there are studies that show that this can trigger other people to end their lives too? I don’t know where I stand around that one because to be honest I haven’t read the studies, and I have mixed feelings surrounding the obviously complex pro’s and con’s surrounding the balance between raising awareness for a continuously-rising suicide rate, the risk of triggering someone else who’s already struggling, and the feelings of the deceased’s loved ones. What I do think we need to talk about though, is how to better take care of ourselves, each-other and our communities so that possibly, we can help keep our people healthy and happy. The scope of mental health is so vast and there is still so much that we don’t know. Maybe you are perfectly healthy as it is, both mentally and physically and don’t need any help ever, but let’s face it that’s not the case for most people. Which is why I love that self-care is becoming trendy, but I want to tell you that it’s not all about pedicures and bubble baths with a glass of red.

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Meditation; a game changer.

You’re talking to the girl who wouldn’t take yoga class because she’d burst out laughing during savasana – the meditative, still, yoga posture that always ends a session – out of the pure discomfort of being still.

The girl who would rather be doing burpees or mountainclimbers or deadlifting than rest day or yoga/stretch day.

It’s become clear however, that I’m not coming out the other side of Lyme the same girl I went in as.

Never would I have thought that I’d be paying money to sit with a group of people while

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Juice Fasting and Social Media Detox!

I am on the end of day 3 of my juice fast, day 5 of my cleanse and day 3 of no social media or cell phone use (phone/text). My Facebook, Instagram and snapchat are all logged out and I’ve only used very minimal email for communication for the past 3 days, and only when necessary.

It’s been beautiful.

I’ve meditated, read, and detoxed. I’ve spent more time in complete silence than I probably ever have before. I went over 24 hours without speaking a single word to another person. I haven’t left the house besides the vet on Friday, and my only visitor was one girlfriend today.

The juice fast has been great, as has been the whole cleanse so far. It is 2 days of raw food, prepping my body for fasting, then 3 days of juice fasting (making your own juices as per their recipes not store bought), and then tomorrow will begin 2 days of easing my body back into solid food. I have to be very careful during this time to follow the meal plan strictly. In the first few days it’s easy to follow the meal plan because it’s new, but now that I’ve had 3 days without solid food and I’m nearing the end, I find myself really wanting those chocolate almond bites that are prepped in the fridge for Tuesday nights dessert! After a juice fast though, my body is not prepared to digest many foods such as leafy greens and I’m sure it’s not prepared to digest the fat from all the coconut oil in the chocolate almond bites that I want to eat!

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Balance

This weekend I did very little, because I chose to do little, not because my body forced me to. That’s not to say that I was bursting with extra energy, but I could have pushed myself to do more and I didn’t. I did a huge grocery shop Saturday, organized my meds, and attended a baby shower today. Besides that I vegged out and binge watched Grace and Frankie on Netflix (I’m going to be Frankie when I grow up LOL).

I ate chocolate and pho and cheese and crackers and drank tea under a blanket on the couch. Alone. Happily. By choice. My laundry basket is full, my dishwasher is clean (and full) and my kitchen is dirty. For the first time in a month. And most significantly, the first time in ages (a year? Maybe 2?) that it’s dirty because I’ve chosen to chill and binge Netflix and not because my body has forced me into submission.

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Rising numbers of deaths by suicide – what can you do? #BellLetsTalk

*Trigger warning, this blog post discusses mental health and death by suicide and may be hard for some people to read. Also I want to be so abundantly clear that absolutely no one is to blame for anybody’s death by suicide and that no matter what, if someone in your life has died in this very unfortunate and devastating way, it is in no way your fault or responsibility. This is in no way a message of blame, but a message of what I believe we can do as a society to create positive change. I truly hope that this post doesn’t sound too harsh or offend anyone, I do honor that we are all just doing the best we can, but truly, ignorance is only bliss for the ignorant and I do believe that education helps create understanding and change.*

We are in the energy of a full blue super moon, and I spent the weekend in and out of panic attacks for the first time in ages, and I just spent the morning on the phone with a friend and their psych nurse and their family, and I keep learning about children under 10 making suicide plans, and its #BellLetsTalk day.

Wow. Deep Breathe.

I also cannot believe how many suicides I’ve heard of recently (in case you don’t know,

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Lessons from someone who couldn’t (wouldn’t) slow down

I am literally sitting in an office in Steveston, BC, with an IV in my arm as I write this. Antibiotics quite literally coursing through my veins, in attempt to kill the bacteria that have stolen my life.

I often forget how active and vibrant I was just before I got sick. I read a quote the other day that truly hit home for me, it was “make time for health or you’ll have to make time for illness.” Wow. That’s a gut punch. If someone had said that to me before I got sick while I was exercising 7 days a week and meal prepping and working 3 jobs, I would have said I didn’t have time to rest. Or that I didn’t need it. The truth is the thought of slowing down was terrifying. I truly believed that if I slowed down or stopped any of what I was doing the world would crumble around me. It was like the walls were slowly crumbling and I was running in circles trying to catch the pieces before they hit the ground, half-ass gluing them back in place just in time to catch the next one, trying to seal any cracks as I went.

While I was so focused on keeping everything outside of me together, I had no idea that it was actually what was inside that was succumbing to intruders like an attack by a Trojan horse.

My body kept asking me to slow down and I kept ignoring it. Through all of my fitness and businesses I had gained a confidence that I’d never experienced before and I was afraid to loose it. Growing up with mental health issues such as severe depression and panic disorder you stop trusting your body and mind. You learn to push through and ignore the signals your body is sending you because often in the case of panic disorder anyways, they aren’t real. Your mind and body believe you’re in danger when you aren’t. To overcome that you learn to ignore those alarm bells and keep trekking through.

Physical illness on the other hand is the opposite. You have to listen to your body and slow down when necessary and give your body plenty of rest and time to heal itself. So you can see how opposite that is. If I hadn’t learned growing up to push through my mental illnesses I wouldn’t have survived. Now, if I don’t learn to listen to my body again and to rest, I won’t survive either.

Ideally though, growing up with mental illnesses I would have learned to sit with the uncomfortable. To allow myself to truly feel all of the sharp and ugly pieces and to then allow them to pass. Ideally I would have learned mindfulness and grounding and some of the spiritual lessons that I’m learning now so that I could have understood better what was happening in and around me and then maybe I wouldn’t have had to get Lyme in order to learn all of these things. But I didn’t, and I can’t turn back time so what’s really important is that I’m learning all that I can now, and sharing my journey to help others.

I’m 27 and learning to listen to and trust my body and intuition all over again – or really, for the first time. Some people learn this young and others don’t learn it until their skin has softened and hair turned gray. Others, I think, maybe don’t ever learn it, and what an unfortunate situation is.
It’s no secret that the Universe will continue to give us the same lessons over and over again until we learn them. I’ve learned to let myself feel the ugly. I’ve learned to let myself love and forgive and heal. I’ve learned enough therapy that I could practically be a therapist. In fact, I’m often teased by my hair clients, “Denise, I’m here for my therapy session!”. I’ve learned what boundaries are and what they feel like and how to put them in place (almost!). I’ve learned what no feels like and the power of the word and when to use it, as well as the same for yes. I’ve learned how to say yes to my body and it’s needs and to rest and to experience the uncomfortable in all of its lessons. I’ve learned that I’m worth a lot more than I thought I was. That my mind and my heart and my knowledge and willingness to share and be open and all of the quirky little things that some won’t appreciate, are worth something; they’re meant to be appreciated not cut down. I’ve learned that I’m not for everybody. And that I’m okay with that. More than okay with it actually because it wiens out those who are not my people without me having to do the work. I’ve learned that there are so many people who love and appreciate and honor and respect me for being exactly who I am. I am now one of those people as well.