Girl sitting on a bench in a parkland wih coaster

I Won't Apologize for Having Fun While Chronically Ill

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When I was six, I was hospitalized with Rocky Mountain spotted fever. At the hospital, I was encouraged to get out of bed, get dressed and spend as much time as possible in the playroom. I brought magazines and books back to my room to read and played with other kids who were up and about on the pediatric floor. There was a girl in the next room with leukemia, and we made faces and waved to each other through our shared window. The fact that I was able to play didn’t mean I wasn’t sick enough to be hospitalized. It meant that regardless of my illness, I was a child with the same needs and wants as other children.

Yet, with adults, the same concept doesn’t seem to hold true. Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events. We’re challenged more by people we know, who should really know better.

After I became ill, I decided to go to my favorite theme park one day. I didn’t do much; it was a very sedentary experience. I posted a photo of myself on one of the rides on Facebook with my germ mask on backward, slept for days to recover from my adventure, and didn’t think much of it. A few days later, my Mom called me about it. A “family friend” had seen the photo and was furious about it. She’d apparently complained to several people that if I was at a theme park, I was obviously well enough to be working and was pulling some sort of scam. It had gotten back to my mother.

I promptly unfriended and blocked the person, but their actions stayed with me. For most of the next year or so, whenever I posted a photo of myself doing anything fun, I looked over my shoulder. I always made a point of describing how sick I was and how I’d needed to rest, and how tired I was afterward. I felt the need to qualify what I was doing; to verify that I was still ill, and to remind everyone that there was more to the truth than what was visible in the photo. Someone’s ignorance and unkind judgments had made me feel guilty about enjoying my life to the best of my ability and upset my mom, and that was unconscionable.

It often seems that there’s no real way for chronically ill people to win this battle. Hostile individuals who don’t want to believe that you’re really ill will find fault with anything you do. There’s no way to appease them, regardless of how you live your life.

Some chronically ill people are able to exercise, some are not. Some of us are encouraged to be physically active in some way to help us maintain function (I have a series of physical therapy exercises to do every day to help with some specific orthopedic issues, for instance). Yet, if you’re seen being physically active in any way, it’s taken as a sign that you’re not sick after all. Society likes to applaud those Olympic athletes who fight through their illness or disability to compete. If you fight through your illness or disability to do something physical sometimes, such as a 5K or dance performance, it may be seen as proof that you’re a fraud.

It’s widely accepted that having a strong, supportive network of friends and family is helpful to those who have chronic illness. We’re told that for our own well-being, we should get out of the house once in a while. However, if we dare to go out in public with friends or do something fun occasionally, again, some will believe we’re not sick. And if we spend one afternoon at the movies now and again, it somehow equates to being able to spend 40 hours a week, 50 weeks a year, at work.

If you live alone or don’t have a lot of support, you still have to take care of daily tasks, but something as simple as buying your own groceries might actually be seen as proof you’re able-bodied.

If you are too exhausted or hurting too much to shower, do your hair or dress up you’ve let yourself go; if you go out with makeup and styled hair, well, you’re obviously not sick because you don’t look sick.

If you post photos on social media where you’re looking well people will think you’re not ill; if you post photos of yourself undergoing treatment, you’ll be accused of being an attention seeker.

If you tell someone about the progressive course of your illness, you’re faking it because your Aunt Edna’s son’s niece had the same condition and she’s fine now.

Social media photos and observations of chronically ill people smiling and looking “normal” or doing errands have even been used to deny or remove disability benefits, which is quite possibly the most troubling thing of all. It’s hard to understand that disability determination specialists, doctors and government benefits administrators — people who supposedly are knowledgeable about a wide range of health conditions — don’t accept the concepts of good days, payback and invisible illnesses that do not always have linear trajectories.

Nobody ever seems to consider what’s happening outside and around that Facebook photo they’re snarking about. The fact that it might have been the first time in weeks that chronically ill patient got to do something really fun eludes them. They don’t realize how much those activities cost in terms of pain, fatigue and reduced function. They look at one photo or one Facebook status about one day and think they’re an expert on your life.

I’m not sure what these people think we’re supposed to do every day. We have incurable chronic illnesses. We often spend most of our time either at home or in treatment as it is. We’re often exhausted and in a lot of pain. If we’re not able to work full time, are we supposed to forgo any and all moments of joy, distraction, social interaction or enjoyment? Will that help us in any way? Being sick is extremely hard for many of us. It’s even harder when hurtful, judgmental types decide that illness should invalidate the fact that we have the same needs as anyone else. Instead of telling chronically ill individuals to shake off comments and accusations, maybe the onus should be on these hecklers to refrain from making them and mind their business. Is it really that hard to leave other people alone?

Eleanor Roosevelt once said: “Do what you feel in your heart to be right — for you’ll be criticized anyway.” I’ve taken those words to heart when it comes to interacting with others about my chronic illness. I am no longer particularly nice when I’m confronted by impromptu judges. Every once in a while someone honestly doesn’t understand, and politely and succinctly explaining a few things helps them. More often, though, they’ve already come to their own conclusions and nothing I say is going to put a dent in their hostility. I won’t waste my time trying to justify myself to random strangers and mean-spirited acquaintances who have appointed themselves judge and jury of my life.

I can’t stop others from thinking whatever they want about me. However, I can and do refuse to comply when someone demands apologies, guilt or justifications from me for getting out of the house once in a while. Anyone who decides that chronic illness somehow invalidates my needs as a person — including my needs for happiness and socialization — isn’t getting an iota of my concern.

Why I Won't Apologize for Having Fun While Chronically Ill
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The Shame and Self-Criticism That Keeps Me Quiet About My Illness

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I recently spent four weeks in the hospital. This morning, lying in bed, in severe pain and unable to move, I had a strange feeling of missing the hospital. Not the noisy and un-restful clinical environment that being in hospital provides, but the “being able to press a buzzer and get pain relief or water or whatever I needed brought to me.” I missed having people nearby to look after me who are there to do just that, rather than friends I need to ask favors of.

I have lots of people offering their support, but asking for help is still really, really, hard. Sometimes I am good at it, but other times — like during this current stint of illness — it’s been incredibly difficult. When I feel at my most raw and vulnerable, when I’m in the most pain and unable to do the basics I need to do in order to survive (making food, shopping, etc.), asking for help is the hardest.

The fragility and vulnerability of being in so much pain you can’t move is scary — I feel a lot more alone than when I was in hospital. Despite having amazing friends around me, it is the moments like this — the morning after the night before — that are the most lonely and vulnerable. Last night I did more than I had done in ages (I’m not even talking that much — I picked berries from the garden and walked up and down the stairs a few too many times — I didn’t pull an all-nighter or cycle to France) but I woke up feeling as though someone was ripping my ribs apart and I was unable to do anything about it, or get up and get what I needed.

These are the moments — the crashes — I want to share with friends and people who love me, but are the moments that are the hardest to articulate or let people in when I’m experiencing them. Partly because often words don’t touch it, but also because it involves showing someone my unedited “messy.” It involves exposing my tender points, my embarrassment, my shame — it involves being vulnerable. Lifting off the veil of ability I often wear and saying “I can’t do this, I need your help” is so hard. I am good at being vulnerable in some areas of my life, but when it comes to illness, I frequently squirm and change the subject or joke about it.

Being so frequently floored by illness is something that, despite part of me knowing that it’s not my fault — it’s life, it has nothing to do with whether I am lovable or not, or whether I could have done something to prevent it — I still feel deep shame, embarrassment, self-criticism and discomfort about it. Part of me feels as though I have failed — at life and at being able to look after myself. Especially when I need help with the basics.

When spending time with friends, I might share a bit of my experience — I explain that I am in pain or feel really ill — but I never say as much as I need to, and rarely do I allow myself to be exactly as I need to physically. I will lie on the sofa, but only when I feel as though I will pass out if I don’t. I will generally push on through, battling hardcore symptoms while I smile and do things, and wait until friends leave or I walk home, until I fall onto my bed in a teary, exhausted, hurting, and frustrated-with-myself heap.

hand drawn cartoon of woman lying on ground by amani omejer

Sometimes this distraction is medicine — it is a welcome break from the intensity of my experience — but other times, I feel lonely and sad. I feel that familiar heartbreaking feeling of not feeling completely seen, known or understood by people I’m closest to. It isn’t their fault, it is just one of the extremely common, painful, and frustrating aspect, of long-term illness — that so much of it goes on “behind the scenes.”

It is as though my illness happens privately and what other people see is only half of me. The half of me that people see — the happy, bright and smiling me — is still very much me, but it isn’t the whole me. It isn’t necessarily what I am feeling at the time. Sometimes it is, but when I’m feeling really ill, I wear the “Seeming OK” mask, because without it I fear crumbling. I feel scared of being and feeling that vulnerable and exposed. The mask becomes a lifeline in an exhausting slog of simply functioning or interacting with people. But it also bites me on the ass when I want to feel seen, heard and understood. It masks connection.

hand drawn cartoon of woman in bed

It saddens me and it also frustrates the hell out of me. Shame and self-criticism is what keeps me silent and squirming. This shame and self-criticism comes from what society has told me I should be doing or achieving in order to have “succeeded,” and ultimately to be accepted and loved.

Chronic health issues have left my life looking very different to what I thought it would look like, and me feeling very different to how I thought I would, but none of it is “wrong.” It might be really tough to deal with but absolutely none of it is me “failing.” If anything it is the opposite: It is me surviving.

Your worth isn’t dependent on what you do, it is dependent on how you are. There are no “right” or “wrong” ways to live, despite society often telling us so — all we have is what is, and how we handle and cope with it.

Shame will always be there, but it doesn’t need to define our experience. Go share with people you trust who have had similar experiences, or people who can have compassion even if they haven’t, and it will dissipate. Even if only for that moment. For me, this is my medicine.

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To My Young Daughter, From Your Mom With a Chronic Illness

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My Dear Daughter,

I’m sorry for the times I said I couldn’t play and for all the play dates you wanted to have that I couldn’t arrange.

I’m sorry for the fear I see in your eyes every time I say I need to go to the hospital. I’m sorry I can’t promise you I’ll be back soon or give you a timeframe of how long I’ll be gone.

I’m sorry for the disappointment when we don’t celebrate a holiday or an event like other families do because sometimes I’m not around because of a hospital stay.

I know you have so many questions on your mind, and I’m sorry for not giving you the answers you wish for. I know you think, “Mommy knows it all,” but in this case, I don’t.

I know you don’t understand why I spend so many days in bed, why I can’t do the many things I used to do and why Mommy changed. That same Mommy used to travel with you to foreign places and used to wake you up and tell you let’s have an adventure.

I may not have answers, but I want you to know that through my weakness, you learned to be strong, and through my fears, you learned to be brave. In a way, I showed you how to keep pushing even when everything around you knocks you down.

But at the same time, you have taught me more than all the books and schools could ever have. You taught me to stand up again after I fall, you taught me to face my fears and keep going on, you taught me to never look behind, you taught me to not look at what made me sad but what made me happy and you taught me to take disappointment with grace and a smile.

Although I’m the adult and the parent, I need you more than you need me in a way. I need you to wake me up every day, I need you to smile and scream and fill my life with noise and I need you to make me busy and push me to be the adult in charge.

Because on my darkest days and at my weakest point, you give me the strength to keep going. You’re the reason I stand up and say I should try again.

I love you and thank you for being my support system (even if you still don’t understand what these big words mean.)

Lead photo source: Thinkstock Images

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The Trickle of Jealousy That Runs Through My Relationships With Healthy People

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I’m a jealous wife. I’m a jealous friend. I’m jealous of the stranger on the street, the put-together moms on the school run, and the frantic ones, too. I’m jealous of stay-at-home moms, I’m jealous of working moms. I’m jealous of my hairdresser, the lady in the fish and chip shop and the garbage man. In all honesty I’m jealous of pretty much anyone — well no, not anyone. I’m jealous of the healthy. I’m jealous of the able. I’m jealous of those seemingly better equipped to cope with chronic illness or disability than me.

To admit to being jealous is a scary thing for me to do. People assume that if you’re jealous of someone, you automatically harbor resentment for them. You wish them to fail, to be “brought down a peg or two,” for them to be miserable. A jealous person is a horrible person, right? For me, I hope that is not the case. That’s not how I roll.

Just because I’m jealous of you doesn’t mean I wish bad things upon you. Honestly I am the biggest cheerleader when my friends and family achieve something. I’m always incredibly proud. I just wish I was able to live like “normal people” do. It’s hard not to hate yourself when you have a trickle of jealousy running through every adult relationship you hold. Particularly on days that trickle becomes a raging torrent, sweeping away your sensibilities and spewing forth over whoever unwittingly triggered it. Usually this happens on a hard day, a day full of pain and exhaustion, but that’s no excuse.

I think I find dealing with the jealousy I hold towards my husband the hardest to deal with. My husband is my caretaker. He does so much for me, and our children, to the point he’s given up work to keep me safe and as well as possible, losing his social life somewhere along the way, too. So what do I have to be jealous of? Well, I will tell you…

I’m jealous of the fact he is the main caretaker now, not just of the kids but of me, too. I’m jealous that he can get up in the morning and function. He can do the school run and shopping and anything else needed. I’m jealous that he can run around with our children and make them squeal with sheer delight. I’m jealous that I’m often stuck in my bed and missing the children growing up whilst he’s in the thick of it. I could go on, but you get the idea. What makes things worse is on top of the jealousy, there’s the thought that if you’re jealous of someone who does so much for you, you must be a bad person.

So I’m letting it go. Not the jealousy, I know from years of experience (and counseling) that while I’m this ill, jealousy will factor into my life. I’m giving up feeling bad about it.

My jealousy is my own. It’s my cross to bear. I’ve come to realize I’m not jealous so much of what you can do, it’s more because of what I can’t. If I have to choose, I would rather deal with feelings of jealousy than feelings of self-loathing. I’ve been there and it’s no fun. So I’ve accepted my jealousy and I’m not going to feel bad over it. As long as it remains a trickle most of the time, and I can still live and be happy for those around me, then I can live with that. On those bad days, well I’ll do my best and I’m not above apologizing if I’m in the wrong. As for my husband, he knows me well enough to realize how much I truly love and appreciate him.

Besides, while I’m jealous I have the extra impetus to keep trying. Pushing forward. Moving on. Living my life to the best of my ability.

Follow this journey on This Little Life of Mine.

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12 Ways to Make Sure a Chronically Ill Friend Doesn’t Feel Left Behind

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People with chronic illnesses aren’t sheltered from reality. They know their lives have made a dramatic shift. The majority of them had full, happy lives prior to becoming sick. That means they’re mourning much of the life they unwillingly lost, including the friends who decided it was too much work to maintain a friendship.

I teach people to concentrate on the positives in their lives and to practice gratitude for the friendships that have survived because those people are their true friends.

To understand that a chronic illness doesn’t have to lead to chronic unhappiness, we need to realize our new lives don’t have to be emotionally wrought with pain, even as our physical bodies might be. Patients often question how to maintain a social life with their heathy friends. They also question how to avoid feeling left behind when their health interferes with activities their friends engage in as life moves on for everyone else.

One of the worst things someone with chronic illness can do is make a mistake in the balance between keeping a social life and overextending themselves. Misjudging their energy and strength can lead to more relapses of symptoms or worse.

Here are some helpful hints for how friends of people with chronic illness can assist in maintaining friendships, while still doing things that will be enjoyable for all people involved!

1. A visit to a chronically ill person’s house to talk can mean just as much as a lunch or coffee date out.

For a big treat, stop by on the way over and grab a surprise cup of our favorite coffee or a frozen yogurt. We can have just as intriguing of a conversation sitting at the kitchen table as at a diner or coffee house, and we will be much more comfortable. This will keep us from being sequestered from your lives, yet keep us from the trials of going out.

2. We are really proud of you for that marathon (5K, swim-a-thon, bike trip, hike, ski trip) you just completed!

If you see a sad look flash across our faces, it isn’t jealousy — truly it’s not. It’s the utter sadness that we know we will likely never get to experience that accomplishment with you and wishing we could join you. But please, please share away. We want to be part of your life, and we want to know your joys. Don’t hide them from us. Please don’t be offended if it takes us a second to catch our breath before we belt out a hearty, “Congratulations! I’m so happy for you!”

3. We’d love to go shopping with you.

We still like to do the things we used to do, and we don’t want to lose all of the shared times we had with you. We only ask for your patience with our pace and your understanding when the trip is abbreviated due our pain, fatigue or weakness. We can always look at it as an excuse for an extra-long lunch — dessert included. But either way, please treat us tenderly if the day doesn’t go as planned.

4. We miss our nights out on the town.

We remember “dancing on the ceiling” and not “going down ’til the sun comes up!” But unfortunately, these days, nights like those might end with us at the hospital emergency room. If you have a great girls’/guys’ night out planned, it would be nice to include us for dinner before you go on to party. That way, we can still feel a part of your night life, but be back home in our comfy clothes before it’s time for our next dose of meds. We can still “party like it’s 1999” at dinner!

5. We can’t join in leisurely bike rides, hikes and nature walks with you like in the past.

Consider going with us on car rides to see the fall foliage or on a short walk at a park with a nice, flat trail. Or join us for a picnic and enjoy the scenery from the convenience of a picnic table. We can still enjoy nature, but it will just be at a slower pace!

6. Offer to drive if we’re going on a long outing.

I know, for me, it takes a lot of energy to get ready, then driving takes more energy and the activity takes even more energy. (Heck, I’m ready for a nap after I shower and get dressed.) By the time I have to drive home, sometimes I’m so tired I’m scared to try. If you can offer to pick me up and drive to our destination, it takes away two of my responsibilities — aka two energy-zapping activities. Then I can spend more energy on talking and listening to you, enjoying our chosen activity and walking a few more minutes.

7. I really, really don’t care if you drink.

My not drinking is not an indictment of your drinking. I’m taking medications that make drinking dangerous. And no, I’m not exaggerating that, nor am I making it up. You, on the other hand, continue to badger me about drinking. Now, that might make me mad. But you having a glass of wine, shot of tequila or a bourbon and Coke, while I have my Shirley Temple as we chat doesn’t offend me. Drink away! Live your life!

8. I’m not lazy, I’m ill.

When I stand for too long, my body hurts all over and I get very tired, very fast. Please don’t think I’m trying to end the conversation if I say, “Hey, can we find a seat?” I probably want to continue talking to you, but I just want to do it in a more comfortable position — sitting down. We can resume our challenging debate about climate change protocols in Siberia once I’m cozily nestled in my lawn chair.

9. Some chronically ill people are unable to leave their houses, which is even more isolating.

If you’re friends with someone who is housebound, you could offer to visit and cook dinner together and bring a bottle of sparkling cider or, if appropriate, wine. Bring a pretty tablecloth and a candle or small bouquet of flowers to set the table like at a restaurant. Play music in the background, so your friend feels they’re transported out of their house. Sharing an evening’s dinner will brighten their day and give them a short respite from the monotony that constantly being at home brings.

10. Treat us like a friend.

I have heard the following from countless people:

“I am a fallible human. I feel alone and scared. I don’t want to be sick, and I don’t want to miss out on life and the things my friends and I used to do. I will make mistakes as I work my way through this ‘new normal.’ I don’t want to be seen as ‘that sick girl/guy.’ I want to be seen, first and foremost, as me, the same person they have always known, just with some physical accommodations.

If I cancel plans on my friends at the last minute, I hope they try not to take it personally. I hope they will take a breath and remember that even if I am smiling, I’m dealing with something they don’t fully comprehend inside. If I make a mistake, I hope they will tell me, with love, so I can do better.”

In short, treat your chronically friend, like, well, a friend!

11. Please don’t make fun of me, call me a liar or doubt my sincerity.

It hurts my feelings when I have to miss outings and nobody seems to care about the emotional impact. It’s so hard to admit that I can’t go to outings that sometimes I’m willing to sacrifice my health and go anyway. Admitting I can’t go is a big step that takes bravery. Please be kind and understand what a loss this causes me to feel. Again, treat me like you would treat a friend.

12. Sometimes it might seem that I’m self-centered, but I don’t mean to be.

For instance, if it seems all I talk about is my health, and I don’t ask about you, it’s not because I don’t care. I may be scared about an upcoming result, or I may have been isolated and not talked recent events through yet. But that’s no excuse. Ask me when you get a turn to talk. Just do it with kindness, and I promise to give you the same courtesy. Allow me to treat you like a friend, including accepting my apology when I mess up.

Know that friendships are vitally important to people with chronic illness, just like everyone else. We value our friends and we miss the friends we have lost to illness. We know it is a little extra work on both of our parts, but we want our friendships to be stronger than our bodies, which can happen if we work together.

With a little bit of thought and teamwork, chronically ill friends don’t have to feel left behind.

Follow this journey on emilyfilmore.com

Lead photo source: Thinkstock Images

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How to Fight Chronic Illness Like a Gymnast

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woman doing a handstand The #FinalFive is cleaning up in Rio!

As a former competitive gymnast, and mega-fan of all things related to the Olympics, I couldn’t be any happier. As a person who has been really sick lately, it’s a little discouraging to see there are people out there my age and older in the midst of Olympic glory. If you, like me, are feeling a little bummed, try a different mindset. Remember you’re a fighter too.

Generally, I don’t like to think of myself as fighting chronic illness because I recognize that my illness is a part of me, and being at odds with myself is silly. That said, sometimes this life is hard. Sometimes it is a fight, and in these times I fight the only way I know how: like a gymnast. Although I’m no Olympian, the sport I love taught me a lot of valuable things during my formative years. In honor of Team USA, I’m going to share some of the most important lessons gymnastics has to offer for a person with a chronic illness.

When You Fall, Get Back Up!

This is gymnastics (and life) 101. You are going to fall (figuratively, and if you’re like me, literally too). When you do, get back up and keep going like nothing happened. You can take time to review why you fell and work to make things better when it’s all over, but in the moment, the most important thing is to get back up.

Set Goals for Yourself (That Don’t Depend on the Actions of Others)

Our coaches impressed on us that we shouldn’t set score goals because we don’t have control over the judges. Similarly, setting a goal to be pain free would be haphazard. Of course that would be ideal, but I don’t have complete control over whether and how well treatment works. Instead, I set goals I can accomplish. I can choose to eat in a way that supports my optimal health. I can choose to complete my physical therapy exercises. I can work to make sure I remember all of my medication. See what I mean?

You Are Stronger Than You Think You Are. Act Like It.

One of the coolest things I learned from my years as a gymnast is I can do hard things. So can you. It doesn’t mean I should always push myself to do those things if it’s not necessary or is going to come back to bite me later on, but it’s so so helpful to know when I have to do things like medical tests and procedures, or power through something that must be done. I can do it (whatever it may be), and if I so choose, I can even do it with a smile. That’s what gymnasts do.

Believe That (Almost) Nothing Is Impossible

This is a fine line for people with chronic illness or pain, I know. The word “can’t” was not allowed in my gym. We were required to do push-ups every time it came out of our mouths. That’s because you never know what you actually can do until you’ve tried (and tried again, and again, and again). So this is my rule: always try. If it doesn’t work out today, it’s OK, but don’t decide it will never happen. Be like Alice in Wonderland! Some days I believe (and) do six impossible things before breakfast (or at least things which I thought might be impossible that day). On other days I don’t get anything done at all, but I believe I might be able to do them again tomorrow.

Never, Ever Give Up (Never Say Die)

Don’t confuse this one for never rest. Rest is important. Don’t confuse it for not feeling natural emotions (of course you will feel them when you meet adversity). Take time to rest, feel what you need to feel, and then keep on working. Whether it’s working at a new skill in the gym, or working on making progress in the treatment of your chronic illness, don’t give up. Keep reaching for the best possible outcome.

Special thanks for this post goes to all of the coaches whose messages will forever resonate in my heart.

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