Because My Health Hasn't Impacted Enough Already

I've been waiting to write this blog for a week or two now. It isn't my story to tell, so I waited but Kevin told me he doesn't mind if I share it. It's his story. I appreciate his allowing me to share it so much, because I'm both hurt and furious over this. It has been burning a hole inside of me, and this blog has become an outlet for me so in glad to finally get this out. 

First I have to give you all a little background on my husband. Kevin, like me, was an elite high school athlete in a specialized position (baseball pitcher to my soccer goalkeeper). He is also in a rather elite category of intelligence/education. He has a master's degree, and in all of his courses in college --both undergrad and graduate studies-- he only received two B's, all the rest A's. He has chosen to take his higher education and brilliant mind and work in the public school system as a special education teacher. So his heart speaks for itself. He also has given his free time to coaching. At the start of his teaching career he was a softball coach. This year, at a new school, they asked him to help with the baseball team, as the pitching coach. 

Now, I know a little about high school coaching. I was the varsity head coach, thereby running that program. I was also fortunate to be the assistant coach and co-coach with many other experienced coaches, for two more sports. When I coached high school, my stipend paid as if I worked 10 hours a week. Never once was that true; I always put in closer to double that. Kevin also put in significantly more time than what constitutes the official season. The baseball team spent all winter doing pre-season conditioning. This is not part of the season. This is not paid time. But Kevin was at almost every single conditioning practice, unless I truly needed him. During the season, he would research pitching drills at home. He would practice the form of a throw or a drill wherever we were, reminding me of my best friend dancing ballet through stores when we were children. 

Once the season began, the team had a practice or game 6 days a week. Kevin early on told his AD, head coach, and fellow assistant coach about my health problems and that occasionally there may be times that he'd miss a practice to be with me at a doctor's appointment. He also told them he wouldn't be available for many Saturday morning practices, because I'm alone all week and I'm disabled and he needed to be with me. He ended up missing a couple of games when I had surgery, and that was it. Early after my operation, we were both back to his games. This was never once a problem brought up with this during the season. 

It was never a problem until Kevin's end of season meeting with the head coach. On the day of the meeting, before it took place, one of the players saw Kevin at school and asked him if it was true he wouldn't be coming back to coach. Kevin was shocked to hear this and didn't know what to say to it. Sure enough when he sat down with the head coach he was not asked back for next season. 

The reason given? My health problems. Kevin was not committed enough to the team, because of me and my health problems. The head coach (HC) told Kevin repeatedly that it was understandable and of course Kevin should put his family first, but he wanted coaches who were more devoted to the team and had less distractions. 

I went to as many games as possible, and I saw firsthand how great Kevin is with the players. They respect him and trust him. They like him. I know from coaching, if players trust and respect you, they will fight battle for you on the field and run themselves into the ground. If you don't earn their respect, even the most talented players will throw away their skills. Kevin helped the guys immensely. They listened and learned from him. They also grew to like me and counted on me being there regularly. Like my own high school teams, we trusted them to be mature young adults and didn't hide my problems from them. They were understanding of Kevin's rare absence to take care of me. They were a good group of guys, both players and people. I had a blast attending their games, feeling like they were my surrogate team since I had lost coaching my own track team mid-season. 

Kevin told me it was immediately obvious to him that my health wasn't the real reason and I shouldn't blame myself, but I did. I felt guilt that he was losing something special, because of his devotion to me. I was hurt that a person could desensitize that way and talk about my health problems so coldly. And I was livid over both his loss and the callous approach to my problems. Kevin rationalized that high school programs are always desperate for coaches. If his commitment was the issue, it would make sense to bring in another assistant, but to ask Kevin to give whatever time he could. Not to tell him he wasn't welcome back. And that made sense to me. I had two assistants on my soccer team, neither of whom could give full-time attendance. But they were great with the kids and great with the sport, so I considered myself lucky to have them whenever I could. 

The baseball HC made one off-the-cuff comment that Kevin honed in on and realized was the root of the issue. HC told Kevin "we're not there to make friends.." Kevin realized the real problem was that the players didn't like or respect the HC, but they liked and respected both assistants. Instead of bettering himself, the HC decided to let go of the better men. 

The following week Kevin learned the AD didn't even know the HC was shuffling the coaching staff around. The AD also wasn't happy to learn the players all knew before the assistant coaches did. 

Allegedly the players plan to bombard the AD and the principal with complaints, because they don't want to play next year. Kevin and the other assistant told the players it was nice that the players felt that way, but don't do it just because they like the assistants--do it only if they believe having these guys, and/or not that HC, is best for the team. I'm certain the players KNOW that, but I'm not sure if anything will change. Several players, really talented players, have threatened not to play next year, but who knows what a year will bring. 

What I know is I made a list months ago about the things I've lost due to my health. My husband should not be able to make his own list regarding his work. I know he's right that this man, the HC, coldly used me as an excuse and it isn't the real problem, but that doesn't make it sting any less. 

Brief Updates From the Past Week

Hi. I haven't written because we've been busy, which also means I've been exhausted. Friday and Saturday we did lots of miserable yardwork to prepare for the arrival of the monster. 

Sunday was a busy day trip. We went to Salisbury and explored our old university. A lot has changed, but we have a lot of memories that feel like yesterday. 

Kevin suggested we park at one end of campus and walk. I reminded him of this chronic illness cat saying, we had a good laugh, and parked in a slightly more central lot. 

Our goal on campus was to find the Sammy statue; clearly we were successful. 

My arm wouldn't let me climb Sammy. I was pretty envious. LMAO at how the tried to make a Sea Gull look hard. 

Then we headed over to the real reason we were in town. 

I got a new tattoo covering my left forearm. It's a light brown that's supposed to look kind of like henna when it's done. I have the words "Pura Vida" on the wrist already, so this accompanies that. Of all the tattoo shops I've been to, this is the only artist who will do this style. It's because, as he says, tattoo artists are used to big drastic change, not subtle browns.

Then we stopped by HoCo to take the poodle. I haven't had him with me for two months. Way too long. 

I need THIS^ to get through life sometimes. I mean, wouldn't you? Look at that face. He's an angel. Except when he's killing and eating cicadas. 

I also got this card, from my bestiemoo. She always knows how to make me feel awesome. I think she knows how to make everyone feel that way, it's one of her gifts. For every ounce of social awkwardness I have, she knows how to connect with anyone. It's a great gift. 

I also had to officially resign from coaching my girls next year. I'm sure a lot of people guessed that was coming, but I planned on staying with them had I gotten better. I would've finished my last semester at UB and coached PHS soccer in the fall. I would've stayed with my parents during the week. Yeah, it would've been weird for me and Kevin, but he was supportive. He knew how much both finishing my degree and finishing one more season with this team were to me. 

I didn't even cry. I think I'm just so numb at this point, I'm accustomed to losing the things that I love, the things that defined me. So that's my week in a nutshell.

Tomorrow I start physical therapy, aka glorified stretching. I'm less than thrilled about it. I long for REAL exercise. Running down a field, receiving a cross and volleying it on goal. It's been a year now since I last played. Middle of June last year, when I broke my foot. As soon as that healed, my nerve stuff got bad. Let's hope it's not another year til I'm back at it. 

You Guys Make My World Less Small

You people in the real world have TGIF. I used to, but now I often forget what day of the week it is. I've also, occasionally, forgotten the month. But I digress. I thought my version of TGIF could be a really uplifting, positive post.
It isn't written by me though. It's written by you.
Sometimes when people reach out to me about this blog, they apologize, more or less, for getting in my business. But please, get in my business. My world is small and everytime someone reaches out, it gets a little bigger.
The messages here are by no means all-inclusive of every FB message, text, or email that I've gotten, and clearly I can't include phone calls (like the 20 minute call from Hawaii yesterday!). Oh, and for once, none of this is about Kevin's awesomeness (even though we can all agree he has been the rockstar of caregivers). It's really all yours. YOU ARE AWESOME TO ME AND FOR ME TOO!!!!
Friends, I want you to know that these messages are a huge part of the reason I have this blog. As I said, my world is very small and isolated lately. Thank god for technology, because I can reach out and connect, and through this my world has become slightly bigger. Every time you tell me I inspire you, I feel more strength to keep fighting. Every time you share a problem that feels similar to mine, I feel less alone. Every time you send me these kind, loving words, you lift me up and you keep me going. You cannot possibly imagine how much every one of these means to me.
And that's a bonus reason I'm doing this post. Because the next time I get really down, I have an easy place to go to find so many blessings and so much love all with a single mouse-click. Re-reading these I wonder, what did I do to deserve you guys?
**Disclaimer: I removed things that gave away identities from the messages, because what you've said to me is personal, and it's not my place to put it out there. I'm just trying to share the wonderful love and kindness you've all bestowed upon me. If I slipped and you feel people reading will guarantee know it's you, message me and I'll go in and edit the post if need be.
So once again, thank you all. Love-love-love, Me.

PS--those of you that say I'm inspiring you through whatever your tough times are, talk to me... I'm home alone all day, so I'm available for those in need of a chat. Seriously. People always think "oh I can't share my problems with a chronically ill person, because my stuff will seem so trivial" but that is NOT true. Being able to talk to someone about "normal" problems, like family issues or dating stuff, make me feel more normal and connected. I will never feel your problems are trivial, everyone's pain and struggle, no matter how big or small, is real and valid. And being there for others lets me feel productive, like I'm contributing to the world. So lean on me. I promise, it will HELP me.

Okay, and on to what you loves have sent me......


"Hey Shanley!

I just read through all of your blog posts (yes, like a creepy stalker) and there are a few things I want to tell you. First off, I want to say I am sorry the surgery did not help as expected. That really sucks, and you are absolutely inspiring for keeping your chin up through all of your struggles. In tandem with that, it's good to know that you're allowing room to be vulnerable- I am a firm believer that allowing yourself to feel vulnerable, sad, and scared really makes you better able to cope with what you are going through. It can be overwhelming at times- feeling like you are literally suffocating in emotions, but taking it one day, one minute, or one second at a time and breathing through it, accepting those feelings- That is testament to your incredible strength. 

I am also really happy that you found a blog as a "mental dump" outlet. I know that when life gets overwhelming it is unbelievably important to get it all out- it is therapeutic and relieves some of the stress. I would like to thank you for sharing your struggles, and triumphs with me (and the internet). It's important that people know and hear about invisible diseases, and I think it's wonderful that you are sharing your personal experiences.

I have struggled with _____, another invisible disease but it is much more well known. I've been thinking about starting a blog detailing some experiences I have had with the hopes of helping others. Reading your blog has been absolutely inspiring, and I'd hope to inspire others as well.

I'm not sure if all of this rambling is actually doing anything, but I was compelled to email you about my feelings on what you've written. So I guess what I want to say is that you are a strong, compassionate, woman who has been dealt a really tough hand, but you have the fire in your heart that gives you the determination to succeed and overcome these shitty obstacles. I can't even begin to tell you how inspiring, and encouraging that is- especially to people like me, who suffer from invisible diseases.

I see on Facebook that you moved - but I googled it and you're only an hour away from me. Please PLEASE know that if you ever need anything, a plush shark, a box of chocolates, some cheer-you-up flowers, a shoulder to cry on, a person to cry with, a helpful ear to air complaints, pains, thoughts to- I'm your girl. If you ever need anything, anything at all, I'm a text or call away.

Love you, keep your beautiful chin up!"

"I am so sorry to hear about all that you are going through... _____ showed me your scar on Instagram and my heart goes out to you, I can't even begin to know all that you are going through but I know that you have made a difference in my daughter's life, not knocking _____, but _____ is constantly saying well it's different because in soccer we were a family,  I hear her repeat that theme over and over again, I hear such admiration in her when she talks about you, not just as a coach but as a person. I am so lucky that she had you for a coach but even more lucky as someone that she looks up to not just for winning  but also a strong, confidant young woman/ I hope you can get the relief that you seek from this pain. Take Good Care of Yourself and Heal...."

"So I started following your blog recently after seeing one of your fb posts... and from what I can tell, life kind of sucks right now, huh? Although your gratitude made me smile. I'm sorry your surgery turned out the way it did, more so I'm kinda pissed. Do I have any right to be pissed for you? Idk, but I am - it just seems like shit. If you get the chance to reply to this, do let me know what actually happened? 

I'm also totally here if you just want to rant and bitch about anything and everything, cuz I think you have every right to at this moment. I also wanted to say that I think Kevin is amazing. I'm in awe of him and you too 😊

I really hope to hear back from you, I've been missing our chats!"

"Hey Shan, I am so enjoying your blog...writing is so therapeutic...but of course my heart aches for you....i wish we lived closer...so sad that you are so ill & lonely...if you would feel comfortable would you please send me your address...would love to drop you a card ...or something homemade & sweet??? Do you have any food restrictions??

Thinking bout you lots...and sending hugs"

"I was thinking of coming over  around 12:30. Is that alright? Do you need anything? Would you like me to pick up something for lunch?"

"Shanley i knew u were sick but had no idea to what extent. I've been reading ur blog and the tears just started flowing. Besides being unnaturally beautiful on the outside lol, ur soul, ur heart shines. Ur an amazing woman and I have an ever deeper admiration of u. I felt a connection with u when I met u for some reason. Shockingly cause I don't like ppl a lot lol. I resonated with ur tough girl attitude. I understand that completely. I just met a guy and I actually like him so naturally I wanna take off running!  I'm trying to be cool about it on the outside and not show him complete crazy.  Idk how to do this dating thing. Ur words have given me some hope for myself, eventually lol. I just want to know what can I do for u?  I wish I drove and could just sit on the couch and nap, talk, whatever with u sometimes. I'm at a loss for words. I can't believe u can't get disability. I just want u to know that I will be here if u need someone to talk to or lean on. I know u have a lot of friends and family an ur husband is AMAZING. But one more won't hurt. Ur a hero in my eyes. I wish u nothing but happiness and less pain. More light and love.  Namaste"

"Keep blogging, it's very powerful and I know you didn't ask for my opinion, but I can't wait to see you to deeper with it.... I know it's been a long journey, but I really hope you start feeling better soon."

"Hi Shanley,

I just read some of your blog and wanted you to know that you are on my mind. I am thinking of you and praying for you. I can't imagine or fully understand what you are going through and I don't always know the best way to put feelings into words, but I am a big fan of quotes, proverbs, and poems. I am hoping that some of these quotes I found can offer you words of encouragement.....

"Let someone love you just the way you are - as flawed as you might be, as unattractive as you sometimes feel, and as unaccomplished as you think you are. To believe that you must hide all the parts of you that are broken, out of fear that someone else is incapable of loving what is less than perfect, is to believe that sunlight is incapable of entering a broken window and illuminating the dark room." ~thethingswesay.com

"An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it's going to launch you into something great. So just focus, and keep aiming." ~unknown

"I'd be unstoppable if not for law enforcement & physics." ~unknown

"Giving up on your goal because of one setback is like slashing your other three tires because you got a flat." ~christinekane.com

"10 years ago we had Steve Jobs, Bob Hope and Johnny Cash. Now we have no Jobs, no Hope, and no Cash." ~unknown (pinterest)

"Tears are prayers too. They travel to God when we can't speak." ~ Psalm 56:8

"The strongest people are not those who show strength in front of us but those who win battles we know nothing about." ~unknown (pinterest)

"I can't promise to fix all your problems but I can promise you won't have to face them all alone." ~unknown (pinterest)

"Never apologize for what you feel. It's like saying sorry for being REAL." ~ILIKETOQUOTE.COM

I hope you smiled at some point. Keep your chin a up and keep writing."

"I just read your blog post. It reminds me so much of my grandparents. They had the strongest love I've ever known and I feel honored to have even been able to be in its presence. I know we haven't kept in touch over the years, but that number right above this message sent December 2007, still works. And I'd encourage you to use it if you ever need an ear to listen or mouth to distract you and perhaps offer advice on something I can't begin to understand, but feel for nonetheless. Keep your chin up, Shanley. We're all rooting for you."

"Hey shan! I got to tell ya- I enjoy reading your blogs- I'm learning about your sickness and I continue to keep you in my prayers! Loved your beachy pics with your hubby- beach pictures are always my favorite! (No make up needed!) I wish you didn't live in _____ bc I sure would love to catch up! Hang in there girl, it doesn't sound easy but with love of your family and hubs I have total confidence your tomboy self will be back! Xxoo"

"And oh em gee shanley we all hope you get bettrr.  This terrible you dont deserve this your are the best person I have ever met ! I know you will have somyhing good coming around the corner soon you deserve It ! :( please get better !!!!!!!!!!!! ♥

......I dont know where I would be with out you . You have really been a big helping hand."

"I miss you so much. I love you.

I actually just started crying when I typed those texts. I'm sad for what you've lost, I'm sad I don't see you anymore, that you can't really talk to me, we still love each other the same but our friendship is different now and I miss you a whole lot. <3

I am glad you started the blog but it does make me incredibly sad when I read it, so I don't do it often. I feel like, I'm a nurse and I should be able to help you. I have all the education, but it is so useless in helping someone I love so much. I don't want to make your struggles about me, I hope I am not coming off that way..."

"Hey Shan I know you've been feeling down lately with all the medical stuff , I just wanted to tell you to stay strong. You are always there for me and everyone on the team, You are a gorgeous person Inside and out, and you can make it through anything. Get well soon Shan, love and miss you."

"Love your modeling pics on IG and super love your tri hair (of course). I'm back in the hospital. Sigh. Hope you're feeling a little better. Glad to see you blogging."

"That happened to my aunt when she had knew surgery. She was 23 at the time. In her 40s now. And has multiple surgeries which never helped. Sorry that's not encouraging news.. I really do wish the best.... That sounds terrible. I thought I had problems too young with a bad back."

"sorry to see the recent events with your body and health 😔 praying things get better babe."

"I wish there was something I could do for you 😩Your such a good woman... I love you and I wish I could be there for you. I will be back In town June 12-16 - If you need someone to wash & dry your hair..😪😁"

"Heard everything got worse!:( I really hope everything gets better and im sure it will!! I love you lots and Im here if you need anything shan"

Love & The Little Things That Make My Days Bright

I meant to post this on Mother's Day, but ya know.... us sick kids aren't always timely with our plans. Plus the meds make us forget stuff. For those of you that don't know me very well, this girl is someone who I have mentored for the last two years and consider her my half-daughter. She often calls me Mommy, and during season I coaches her, she leaves me little love letters in my coaching book. I haven't been able to see her recently, but she'll always be my girl.

The happy Mother's Day text came in on Sunday night. My reply was in the morning. And calling me "Stanley" wasn't a typo, it's one of her weirdly affectionate things.