Search This Blog

Monday, July 30, 2018

Don’t Treat My AS With Your Opinions

Your Opinion Doesn’t Out Weigh Fact

I have put this off all day, because I don’t know how to feel or what to think. I had my follow up with Pulmonologist today, to get my test results. If you follow me, then you will recall the phone call...they said nothing showed up on my overnight monitor. Well, that was a lie. I don’t understand the purpose of telling someone things are fine when they are not. 

On arrival, when they do my vitals, my O2 sat read at 88%. I’m thinking, good...they can see it for themselves now! Wrong! So the Nurse Practitioner says, everything came back normal. I asked to see the results. He pulls up my overnight monitor and says, well those drops you see, I don’t believe those are accurate.

Wait...what? So there were drops? Yes, we picked up about 4 or 5 in the 3 hours it monitored for. Like I said, I don’t believe those are accurate, so your results show no findings. Hold on, why is it you don’t believe they are accurate? “I just don’t!”
Yes, that’s what he said. No medical explanation, it’s just his opinion. 

Well, I’m sorry but your opinion doesn’t out weigh facts. For a year now I have been trying to get Doctors to understand the change in my life. I used to hike, now I can’t climb a flight of stairs. Last year, I participated in a 5k event, completed a 52 hike challenge that covered Hundreds of miles, completed a separate 365 mile challenge, two 100 mile challenges, and a 1 million step challenge in 60 days as well as a 1000 mile challenge. That’s just a small taste, I hiked hundreds of miles aside from that. I traveled and was actively hiking on average twice a week anywhere from 15-25 miles in the week. 

If Only I Looked As Sick As I Feel

I also had the results of a High Resolution CT Scan at this appointment.  Those results showed Thickening of the wall, but he gave no clarification on that. By this point, I was already frustrated and not thinking about asking for more clarity, rather my focus was on getting him to understand something isn’t right. 

We live in our bodies everyday, we know first hand when something isn’t normal, for lack of better words. We have to advocate to people who have no understanding of AS, people who don’t believe us, and to the people who are supposed to be there to help us feel better. We shouldn’t have to fight this hard to get an understanding and whatever it takes to get answers. Why are Doctors so quick to say they don’t have an answer so that’s it, they can’t do anything else. 

I’m Demanding Proper Healthcare 

I get a lot of responses to my fight for adequate answers. A lot of them not easy to hear, very hurtful and demeaning. I have had Neurology, Cardiology and Pulmonology and my Primary all give up and say nothing is wrong just because they don’t have an answer. That’s not acceptable. They should go to any lengths until they have the answers, they are the Doctors. Instead they throw medication at me and say, they don’t have an answer. 

I refuse to except that. So I open my mouth and demand they look. I tell them they don’t get to give up, I’m watching my life fade into nothing, and they don’t get to contribute to that, they are supposed to fix it. This shouldn’t be the only way to get answers. So far, that’s what I have to do though. After pressuring my Primary, I made it to a Pulmonologist. Now because I pressured my Pulmonologist, I get a repeat Lung Function Test, and suggestions that I get a referral to a University. 

Why Isn’t The Logical Answer The Easiest

I just can’t wrap my head around it all. Even when they see my heart rate spike, or my O2 drop, they want to believe it can’t be real. Since when did the standard practice become convincing the Patient its all in there head? At what point is that productive healthcare? I get it, tossing medication at us lines someone’s pockets. Repeat visits because we never feel better, it’s all a money game. I just can’t understand why it became so common place to ignore the cries of a patient that something isn’t right, when clearly test reflect that. 

Not only test, but symptomatic complaints as well. It’s difficult to muster up the mindset to seek out medical care when things get real bad. The days and nights of relentless vomiting. Heavy pressure in the chest. Heart racing, short of breath. Pain elevating rapidly. How do you pull it together and walk into a Doctors office that’s just going to tell you nothing is wrong? 

I’m Getting Used To It

You sit in Emergency Room, Urgent Care, and Doctors offices alone. Just hoping some random friend will actually respond when you text to vent about the way you feel and the dreaded wait time. The fear you try so hard to hide behind. Then it slips out to those you reach out to. All in hopes to find a shoulder to lean on. Instead, you stare at your phone and nothing appears. You keep a smile and say “I’m fine.” It’s all an attempt to pretend the loneliness isn’t real. 

Months, go by and people ask you if you really are that sick? Maybe it’s in your head. You are far to pretty to have anything irreversible. You are so young, there can’t be anything wrong with you. Others opinions filled with doubts and lack of support. They don’t even have an ounce of medical explanation as to why, it’s just not possible that’s all. Friends, Family, and Doctors too. You say that’s okay, I’m getting used to it. Used to what? To nobody believing me, to doing this alone, to not having answers. 

If you take nothing else from this, let it be that someone you know, needs you to just be there. They are to scared to ask because of constant let down, but they just want one person to not judge, not question. Just sit, hold their hand, wipe away the snotty tears. Or stand up for the most courageous battle they fight and let them know you got their back. Sometimes it’s the little moments, other times it’s realizing how great the need is. 

I’m not in this alone. There are thousands out there just like me. Dealing with the same thing I am. We need others to stand up, help us be heard and let us know we are not fighting alone. Even when I’m surrounded by people, I feel utterly and completely alone. I’m scared of my world, and I don’t want others to feel this way. So I fight for change. True change. We deserve to be heard, seen and treated, we deserve to live as healthy a life as possible. 

Please stand up and help us fight to Kick Some AS! Together We Can Kick Some AS! Giving Spoons To Kiyck Some AS! 

Sunday, July 29, 2018

Sacrifice for Life

Sacrifice For Life

Do You Truly Live

Do you get up everyday throw on your clothes and rush out the door to work? Maybe you spend some time getting ready and then it’s off you go. When that work day is complete are you tired and ready to go home and relax?  Do you make dinner for the family and spend some quality time together, sounds nice doesn’t? Maybe you finish up work and have to run errands, pick kids up, attend their after school activities. Sounds like for the most part you might have a pretty good life, at least most would probably think so. Living can certainly mean that you took every opportunity to enjoy quality time with your family. That sounds like a pretty simple and nice life if you ask me.
Some people out there believe that if you are not seeing all the wonderful things the world has to offer that you are not truly living. That is something that can be done as a family activity, so why not jump out there and explore while you enjoy that precious time together. Are you an adventurous, thrill seeking adrenaline junkie? Take some risk and try a few new and exciting things. Do those things that most people either are to scared to do, or just cant do it. Whatever you do, don’t waste a single second of your life. Why, cause not everyone has it so lucky. Some people have to sacrifice everyday just to live life.

Quit Your Bitching

I wont go into how many people I know that constantly complain about their less than perfect life, that actually is pretty much what I just finished describing above. So many people don’t get it, and take for granted what they have. Do you have any idea how many people I know that will complain about their life but not get off the damn couch? This brings me to the point of this blog, my soul reason and drive behind this one is all in regards to what those of us with an unhealthy life do everyday in order to live life. Trust me, I have had many people tell me that they view me as lazy, unmotivated and just seeking attention. They can all just go right on ahead thinking that. Until you have lived it, you have no idea what it is like.

After spending a rather wonderful evening out for the Bristol Night Race, It made me think a lot about the sacrifices some make just to live their life everyday. I’m not just saying this, I am hoping that this falls into open hearts and minds. I am speaking to be a voice of many and maybe one day make a change in this world that means something. You truly don’t realize how much being diagnosed with certain illnesses impacts your life until you are faced with making That Sacrifice. For 20 years I have been making sacrifices, some I wasn’t even aware I was really making, but I was doing it. Now, I am having to make even more sacrifices than I ever used too. I am hoping that some people will open their eyes and maybe see how good they truly have it. If I could get one person to realize how negative it is to compare their situation to another’s. By all means offer support, but unless you have the same diagnosis its unlikely that you truly understand anything about where they are coming from.

It’s A High Price To Pay

Each and everyday when I wake up I have to think about what I can do to go about my day. I am constantly faced with having to cancel plans or change my routine because of my pain level or other symptoms. I loved to go dancing, something that just gave me joy. I know that by going dancing it will mean I cant do something else. Today I had to make a sacrifice I didn’t like having to make. After enjoying an evening dancing, then attending our home towns night race, My legs are in bad shape. This meant I had to sacrifice time with my family out on the lake.

When someone feels good, they don’t realize that other people in the world would give anything to do kids school events, and house cleaning and work full time and really still be able to enjoy time just relaxing. Sadly that is not the case. Especially not with AS. Sitting on certain furniture triggers more pain. Sitting to much can cause more pain. Standing can cause more pain and all the increase in pain can cause for issues walking or driving. It never is as simple as just saying lets relax on the couch and watch a movie. You cant get comfortable, always moving, getting stiff and frustrating those around you. Then there is the potential that having had to many bad days in a row sitting down might just mean you fall asleep and now you are completely missing out on that quality time.

It’s Not Easy Being The Loved One

It truly isn’t just those of us with the diagnosis that suffer. Our loved ones suffer not understanding why you don’t spend much time with them, or why you don’t talk to them much. What it all boils down too, is they struggle to understand and you have no idea how to help them really get it. I hate more than anything when someone says to me “but you did___, so you can do this too.” You are right, we might have completed a certain task, but that came with sacrifices. I most certainly sacrifice my comfort level far too often in order to just live life. I will push through unbelievable symptoms just to spend quality time with someone. I hold down my job, try my best to maintain my house and caring for my children and 3 dogs.

I love being outdoors and thrilling activities, I most certainly have made myself much sicker because I wanted to partake in an activity. I do it, not because physically I can, I do it because I want to say I lived. Unfortunately it is getting harder and harder to participate in these types of activities and I am finding myself doing less and less with the ones I care about because of where my health is at right now. By no means have I given up, I am making sacrifices everyday just to make it through the day. If I have to cook, or clean, or do anything at all and have participated in an outside activity it is going to take me a few days to recover from that.

How To Balance The Sacrifices

I am currently trying to find a way to balance these things better. I need to hold down my job, so I have to plan around this first and foremost or I wont be doing anything else at all.  Next I have to plan around the needs of my family, do they have anything scheduled, do I have any appointments or things outside of work scheduled? If I have had to do any of the above, you can forget me cooking dinner, I will not be able to stand in the kitchen that long. So most days my family isn’t eating the best of options for food. This also makes an unwated sacrifice, my health can be affected by what I eat.

This leaves me constantly sacrificing time with other family and friends, I must have the energy to work, and care for my home above anything else. Some days I feel like I can take the risk and go do something extra, other days I do not. Just going to the strore is a monumental task for me to complete. So yes, I choose to go live my life regardless, but don’t for one minute thinks it is easy. Because unless you have been there you have no idea what I am putting myself through in order to do those things. Please, don’t be one of those people with a healthy life that complains and does nothing productive. Don’t be one of those healthy people who accuse us all of just being lazy when we cant or don’t do something. Dear God please don’t be one of those perfectly capable people who just refuses to do anything because you feel self entitled to a world taking care of you.  Some of us would give anything to live a day without having to question if our choice would make us feel even worse.

Friday, July 27, 2018

Counting Blessings

Counting Blessings

The Road I have Traveled Down

I once viewed my life very differently than I do now. I was the skeptical girl always asking “WHY ME?” I never understood that you truly do have control over how good or bad your life may be. I did a lot of negative thinking for many years. This allowed me to feel as though I didn’t deserve better, I wasn’t good enough, and that I never measured up to what others wanted me to be.  It took 35 years for me to understand that I don’t have to measure up to anyone’s standards, I am allowed to just be me regardless of others approval. Now, that having been said, I changed a lot of things about how I lived my life in the last two and a half years.
I used to be the girl who always knew her relationship would eventually fail, or that my friendships wouldn’t last. I was the girl that knew I’d push the most important people out of my life, because I couldn’t face not being who I thought they wanted me to be. I pushed away for fear of disappointment. The way I looked at it, I was just going to screw up  again anyway, so why even try to do anything different.

Silence Isn’t For Suffering

I suffer in silence, I hear that phrase a lot! Especially in the world of AS, where we keep our pain silent everyday. However, I am a lover of the outdoors, the beauty of nature, the tranquility of a peaceful mountain retreat. Silence wasn’t meant for suffering, it was meant for much greater things. I choose to no longer suffer in silence, I wear all my pain as a badge of honor. I share those parts of me that are dark and ugly with everyone in my world. I choose who gets introduced and when. I solely decide how each and every person gets to be connected to those deeper parts of me.

I will no longer fear if I am meeting the expectations of others. I share my thoughts and I share my stories, I grow every day as I do this. In the beginning it was harder than I ever imagined it to be. I did A LOT of crying. I dreaded moments because they would make me uncomfortable, I hated bearing myself to others in that way. I have tried to run from this new and unusual feeling on several occasions. It took a lot of work, to get where I am today.

Learning Your Place In This World

Over the course of these past few years, I was faced with a drastic and very painful change in my family structure, leaving an abusive relationship, then stepping out unsure of the world into my own home for the first time ever. A huge transition with work, that ended up being one of the best experiences I have ever had. Watching my family suffer losing a loved one to addiction, and keeping those family bonds from falling apart after that. Then another sudden blow that financially changed my life with a negative impact.

Through all of this, I gained so much strength from my biggest supporters ever. Previous co-workers, newly found friends, family that I was gaining stronger relationships with and little did I know it was all leading me to a better tomorrow. I have balanced myself out more mentally in the past 6 months of my life, than I ever dreamed of. I thought I was honestly so very happy, just being me and growing all on my own. I was persistent about not allowing anyone into my personal bubble, nobody was allowed to connect with me in a way that would alter my desire to continue growing as the person I am becoming. 

Fall Into Me

I struggled with health, and mental instability as I was depressed, stressed out and angry so much. Some very amazing friends changed all of that and I found my voice and strength to fight and simply meet my very own expectations. I was told by someone to “Get My Butt Up And On A Trail.” This moment, changed my life in a way I never expected.

I shortly after met the most amazing group of ladies that became my personal therapy group. These ladies provide so much bravery, strength, support, love and companionship. They are all true Fierce Independent ladies. The same friend that pushed me out of my bed and made me get moving on the trails, is the very same reason I sit her writing this now. He has been an amazing friend, mentor and support to me over these past months. He not only encouraged me for the mental safety, but for everything. I have outstanding friendships, new job, and relationship all because he inspired me To Do More, Be More.

With the support and encouragement from these great blessing, I have gained confidence and pride.  I no longer fear what’s to come in life, because I know now that I can “Fall Into” someone who will always be there. I no longer feel that I have to carry the weight of the world on my shoulders. I have  family, friends and co-workers that I know can catch me when the ground beneath me crumbles away.

Not Perfect, Just Perfectly Me

I know that I will never be perfect, but I don’t want to be anymore! I am happy to just be who I want to be. I am someone’s forever, mother, daughter, sister, aunt and friend. Forever those titles belong to me, because I learned to love myself, I found someone to forever love me! Like the great and wonderful RuPaul says, “If you cant love yourself, how the hell ya gonna love anyone else?” I honestly was given blessings in disguise. When I closed the door of one loved one passing away, he sent me a multitude of angles to guide me along my way.  I truly believe that all of this is for greater purpose, it has meaning I am yet to understand.v I am ready to face this grand adventure head on!

Monday, July 23, 2018

Dear Ankylosing Spondylitis

Won’t you Leave me be
Just stop bothering me
I wanted friends and family too
Instead all I got was endless time with you
You’re not kind in anyway 
Your cruelty unleashed everyday
Everyone around me thinks I’m crazy

The days turn into months
The months turn into years
It seems I’m aging fast
From all this time that’s past
I wonder how much longer I will last
I really don’t mean to sound this way
But this is my life, it’s just another day

Blinded by this mask of invisibility 
It’s not one thing, or even two or three
You tore me down and left me bare
But no one saw that you were even there
I speak your name and ask you please
Don’t you know what you’ve done to me
Can’t you see this world of agony 

Monday, July 16, 2018

To Whom It May Concern

To Whom It May Concern,

My name is Summer Canady and I was diagnosed with Ankylosing Spondylitis. I committed to bring awareness and support to the community. For the past 2 years I have worked to start Tennessee’s very first Support Group Sponsored by The Spondylitis Association of America.

The project Giving Spoons, created to assist families in financial burden, be it due to high medical expenses out of pocket or low income available due to lack of being able to maintain a full time job. We are not like your typical assistance program. Although we will have eligibility guidelines, the net of your income will not always be a deciding factor.

At Giving Spoons we understand that high deductibles and copay’s can still bring about burden to an otherwise stable income. That’s why we will be providing eligibility guidelines outside of just having a low net income. As long as you fall under at least on the the guidelines you will be eligible for certain assistance.

Our project is also dedicated to not just offering a solution financially, but to build a family of support with our growing list of pen pals, both diagnosed and undiagnosed. We are here to become a family of support in all areas, emotional as well as all others.

The Invisible Illness wall calendar project in the works will be used as a tool to promote awareness, advocate for our community and put a face to Invisible Diseases. This project will be a source of fundraising for the Spondylitis Association of America. All proceeds going to support their efforts in leading the research and awareness

We will host fundraising events and bring Spondylitis Awareness to the forefront of communities using media of all sorts. The blog project at is dedicated to sharing the deep and not always pretty parts of living with an invisible illness. This stories will be turned into a book called Giving Spoons to Kick Some AS. This book will also be sold to fund my awareness and advocacy efforts. These stories will also be told via YouTube videos, and eventually live casts to include time for audiences to ask questions or contribute to the discussion.

I coined the phrase Kick Some AS when I was first diagnosed and that along with the phrase AS Doesn’t Rule My Life have been my motto. As time has passed, the importance of the spoon metaphor grew quickly in the Spondylitis community. This led to me coining the phrase, Giving Spoons To Kick Some AS and Together We Can Kick Some AS. I hope that you will join me on this journey.

Finally my crafting skills will be used to create custom pieces to sell in order to generate income to assist in funding Giving Spoons. I will give a percentage of my projects to the Spondylitis Association of America as I wouldn’t be capable of doing so much without them.

Please feel free to reach out to me for free educational information on Spondyloarthritis disease as well. We would be happy to provide you with brochures.

Thank You,
Summer Canady

Custom Products

                                      Custom Decals and More

Purchase your custom vinyl products from us and you will be giving to a community of people suffering from a dibilitating disease. Ankylosing Spondylitis is a form of arthritis known as Spondyloarthritis. This disease affects 2.7?million people, yet it’s still getting puzzled looks. “Spondy what?” AS is a chronic paino progressive disease that mainly affects the spine. By purchasing from us you will be helping fill a care package with items that can be difficult for some to purchase on their own. All proceeds  will fund the project Giving Spoons. We will send out financial assistance or purchase an item of great need. Many with AS are currently fighting to receive disability with a very limited income while they wait. With your help, we will be able to ease the burden of those in need.

Decals Starting at:

1 Color                      2. Colors                   3. Colors.
3 in. $4                         $6                                $9
4 in. $5                         $7                                $10
5 In. $6                         $8                                $11
6 in. $7                         $9                                $12
7 in. $8                         $10                              $13
8 in. $9                         $11                              $14
9 in. $10                       $12                              $15
10 in. $11                     $13                              $16
11 in. $12                     $14                              $17
12 in. $13                     $15                              $18

Large products available at request. Pricing determined upon request.

Onesies-24 month clothing
$13                                 $15                             $17

Youth clothing
$13                               $15                              $17

Adult Clothing
$19                               $22                              $24
Plus Sizes
2x and up $2 more

$30                           $33                                 $35

Two Sided
Request quote

Mugs.                         Plastic Tumbler                    Stainless Steel Tumbler
11 oz $11                          10 oz $10                               10 oz $12
24 oz $13                           16 oz $14                               16 oz $14

Wine Glass.                Shot Glass.                               Mason Jar
10 oz $12                  Small  $12                                  Small $12
16 oz $12                   Large $12                                  Large $15
20 oz. $19                                                                     With Lights $19

Vase.                               Cutting Board                          Coasters
$15                                        $12                                         $12

Pillows                              Tote Bag                                   Canvas Art
$15                                        $12                                            $25

Wood Sign.                       Magnets                                  Stickers
$35                                         $5                                           $5

Jewelry                                 Spoon Art.                        Custom Artwork By James
Ask for Quote.                     Ask for Quote.                      Ask for Quote

If we don’t have a product listed, just ask. I’m sure we can work something out!

Together We Can Kick Some AS!
Giving Spoons To Kick Some AS!

Package Examples

                   Care Package Example

Heating Pads                  Hot/Cold packs                 Oil Diffuser
Tens Unit                         Salt Lamps                    Vicks Steamer
Epsom Salt                      Oils/Balms                         Sleep Mask
Bath Bombs                     Turmeric                           Vog Mask
Body Care Products         Slip on Shoes/Slippers      Cushions
Assistive Devices             Travel Pillow              Sound Machine
Journals                            Pill Case                             Shirts
Gift Cards                         Medical Alert Items            Bags
Gas Cards                         Back Scratcher                  Decals
Blankets                            Foam Roller                      Books
Jewelry                              Educational Material        

Any combination of above mentioned items. This list can grow at any time. There is always the potential to receive special surprise items as well.

Giving Spoons Application

Giving Spoons

Sponsorship Application

Family Size: Adults__________Children_________


Male:_____   Female:_____

School Start Date:______________________________


Net Income:___________

Brief Description of debt:

Brief story on your medical journey:





For sponsorship application must be completed and submitted to no later than July 30th 2018!

Eligibility for Giving Spoons


We all know that a family living with a medical issue can face financial struggles at times. These moments make it difficult to provide for your family as well as provide for the expenses of being sick. To ease the burden we will be picking families to sponsor for special occasions.  Complete the application for sponsorship and submit to Giving Spoons at for a chance to be sponsored.

This year we will pick one family to sponsor for back to school expenses. One family to sponsor the cost of a Thanksgiving meal. Finally, one family to sponsor for the Christmas Holiday.

Eligibility requirements are simple, provide information as to why you have a financial burden at the moment. Maybe you can’t work and have not been granted disability. Maybe your out of pocket expenses are just to high. Maybe you are disabled but it’s just hard to make ends meet. Once we receive applications, we will do a drawing and notify the selected families.

Applications must be received by July 30th for school Sponsorship and by August 30th for any Holiday sponsorship.

Friday, July 13, 2018

Let me introduce myself

Let Me Introduce Myself

Hello, My Name Is

Some people are keeping up with my blog, reading each time I post. Others, this may be the first time you read and still yet others only read a few of them. Either way, you are learning something about me each and every time I post. Lets start out with an introduction, I am Summer Canady. As you see from the photo above, I appear to be a happy woman. That is a fair assumption, because I am however, I haven’t always been that. This was all the easy part, from here on out its going to be a bit harder. I’ll take the time now to provide a disclaimer/warning. Not everyone will like what they read here! Move on if you think you might be 
offended! Otherwise, stick around and get to know me a little more.

As a young kid, I didn’t feel accepted, in fact as I was growing up I always felt like I was an outsider. I didn’t have a bad life, just experienced some things growing up that might not be the best memories. However, regardless of how happy I was, I was always not happy on the inside. As an adult no, I am not dwelling on what things happened in my past, however I have learned that they do have an impact on the way I would think and respond to certain situations.

Absence doesn’t always make the heart grow stronger

A big part of my life, I felt like I was never going to be as good as others wanted me to be. I understand my parents had to get divorced, and in doing so my father has become a better man for it. So, that’s fine, but having my dad gone by the age of three and an additional 3 stepdads come and go as well. I started to think something was wrong with me. It wasn’t my fault the marriages didn’t work. Of course does a kid ever understand that kind of stuff, heck no and I darn sure didn’t understand that it left me feeling a void that I wasn’t good enough. I only learned that as an adult.

As a teenager I made the choice to live with my dad short term. Little did I know that my siblings would grow closer to each other without me around, my nephew and niece’s would as well. When I came back home, My older sisters had a very close bond and have been that way every since. My nephew and nieces no longer really knew who I was. Then it wasn’t long before I moved away again. My children and I lived for several years only an hour drive away. It would seem that was a distance great enough to limit the relationships drastically.  Only seeing each other on special occasions and holidays for many years.

Where do I belong

I later came back home, after a failed marriage and a short bad relationship. I had dropped out of high school and been a stay at home mom, so I had no work experience. Everyone in my family had made their own lives and I didn’t really fit in anywhere. Meeting all the wrong people, and struggling to raise my kids on my own. working dead end jobs and just trying to make it in this world that I wasn’t even sure how to fit into. I was married at 18, so all I knew was childhood, and a life with my former husband. Nothing felt like it was right, nothing felt like home. I felt completely alone, and felt like I had never really been given any guidance in how I was supposed to improve my life.

My mother and brother helped out with my kids a lot as I went to school to be an EMT, later changing careers to work in home with individuals with intellectual and mental disabilities. I still wasn’t happy though, not on the inside. My life had seen many hard times. Many times I had failed my kids in parenting, and in trying to have a relationship. I didn’t want to be alone, but I had no clue who I was supposed to be either, I was just this lost girl afraid to tell anyone in the world that I didn’t know what to do. I didn’t always understand the choice I made could be a bad one.

You have to hit rock bottom

Nobody can help a person who doesn’t even know they need help. That’s the biggest thing, I didn’t truly realize there was anything I needed. On the flip side, what I needed, nobody else could have provided me with. I eventually wound up in an abusive relationship that tore me apart worse than I had ever dreamed of. It not only destroyed me as a person, it killed my soul. I honestly didn’t think I was worthy of living anymore. I was afraid to let anyone know, for fear of their judgement. In my head it wasn’t that they would offer help, it was they are going to see that I screwed up one more time. I hated more than anything for my family to think I had messed up again. It made me feel like such a failure.

I felt like I was supposed to be someone I wasn’t, and that unless I was that person, they would never approve. Eventually it all came out and my family helped me get out of the relationship and get where I am today. Prior to this I had never really lived on my own, as my own person. I always just floated along as if I was some extension to someone else. I didn’t know how I was suppose to function without whomever it was at the time. This by all means was rock bottom. I had nothing, but my kids and a bunch of hand me down junk that wasn’t enough to even supply us with one full bedroom.

Becoming Who I am

This was the hardest road I had ever gone down, even though I had been in some sucky situations. Here I was forced to make myself become comfortable with being alone. In time things began to change for me and I did become comfortable on my own. A little to much so. I had a friend need a place to stay for a night and of course I offered to help, but the entire time I was wishing in my head they would leave. Not because they did anything, simply because it was invading my bubble. I was so comfortable that I didn’t even want so much as a friend sleeping at my house. My kids and I, that’s it! This was my place of security. This was my home. This was my evidence that I was succeeding.

Yes at some point I decided to try and date again. I felt very confident that I could do this and wouldn’t become anything other than the person I wanted to be. I was right, the first person I met was a flop and I didn’t give in. I made it clear what my expectations for a relationship and wasn’t going to settle. So I didn’t travel down that road. I had no desire for disaster relationship to cost me my home or my kids or my emotions. I would rather stay single than date the wrong person again. I was learning who I wanted to be as a person. Learning the things I wanted to become passionate about. I was making friends and finding time for family, friends and myself. I was feeling better than I ever had.

The calm before the storm

Even though my life was on a very good uphill swing. It seemed as though I might have finally had it all figured out. That was not the case. I had gained a lot, but not enough. I was still hiding a lot of emotions that I didn’t want to own. It would be the day after Christmas when my life took a drastic turn. Events that had played out over the years had caused emotions and tensions to grow high. My children were stressed and I was stressed. I had a high stress job, and was working constant overtime. It all just came to a head and we snapped. It was this outburst of anger that has sent me and my kids down a road of true healing and repair.

Through counseling I learned a lot about myself and my kids. I have learned a lot about what things in my past had an impact on all of the things in my life up to this moment. Its been a long road, one full of tears and moments I dreaded. I have had to be honest with myself and own my emotions. I also had to own my mistakes. This brought me full circle to the real road to recovery. A year ago, I questioned my judgement, still knowing pieces of that girl who didn’t know how to be her own person might be lingering. I wasn’t sure if I could trust my own judgement. having previously wound up in bad situations because I thought things would be okay. I ignored things I shouldn’t have in the past simply to not have to face failure. I was terrified that girl might still exist.

Boy does it feel good

Now like I said, I have come a long way. I also still have a long way to go. I have plenty of learning to do and I am certain I will have highs as well as lows. After all, whose life is perfect all the time anyway. I knew I had finally found myself. I had been learning to love myself over the past couple years. Wanting to do more and be more. I am confident in the things I am passionate about. I am working hard to make something out of the hand I have been dealt. If all goes well, I will be doing more hiking in the future as well as hosting support groups for individuals with AS. I am working on figuring out a new role in my job and determined to make it a success regardless of how stressed it might make me in the process.
Putting my heart and soul into hiking and AS has helped me grow in my confidence. Meeting some great inspirational people as well has helped in that. I no longer fear if the pieces of that girl still linger on. I’m not afraid to stand up for myself in spite of someone’s feelings. In other words, treat me badly, and I will put a stop to it, rather than fear how you might feel about it. If a person loves me, they will love me for who I am, not who they want me to be.

Having said all of that, for the first time in my life I know confidently who I am. I am Summer Canady, the girl who has 3 kids she raised mostly on her own. The girl who has a big enough and kind enough heart to take care of her dying ex husband simply because its the right thing to do. I am the girl who has traveled and loves travel and has experienced much more beauty than some ever dream. I am the soul that never truly feels like anything is home because I am only truly home when I am seeing the wonders of the world.  I am a passionate lover. I am the girl who never wants to settle in one place because adventure makes me thrive.  I am the girl that hikes, and loves to take pictures. I am the one with AS and no, I don’t think that’s a flaw. I will be the girl who starts the first AS support group in TN/VA. I am the girl who wants to learn to dance, because it makes me feel beautiful.

I stand for myself

I no longer feel like I need to find anyone else in order to be who I want to be. I became who I am all on my own. It might have taken me 35 years to get here, but I have confidence in who I am for the first time in my life. I know I can make the right choices and I know I am capable of doing anything I want on my own. I am proud of everything I have come through and where I am at right now.  There will be no more relationships that I just disappear into. I will only shine more as who I am or I simply wont have it in my life. I don’t need to ask anyone else if my hopes an dreams are smart, because simply put, just because someone else doesn’t like it doesn’t mean I shouldn’t reach for it. I am confident in aiming to be everything that I want to be.

The things I want out of life might be different than normal, but that’s okay and I have finally realized that I don’t have to be what anyone else wants or thinks. I get to be me and everyone else gets to accept that or move on. I will travel till the day I die. I will blog till my little fingers fall off. I will be there for my kids and embrace wherever their path takes them in life. I will dedicate myself to bringing awareness to AS. I will continue to grow in my photography. I will be as passionate as my heart and soul will allow when it comes to love. I will be a hiker and an adventure seeker. I am confident to be me, confident enough that I know I hold value and I deserve great things in life. My great things just might not be the same as everyone elses. Don’t for one second think that I will ever settle again. I won’t, because I finally truly know I deserve to have everything I have ever dreamed of and I will reach for those dreams for the rest of my life!

Wednesday, July 11, 2018

A Story Of Love And Addiction

A Story Of Love And Addiction

In The Middle Of A Memory

It is moments like this when it hits me the hardest. In the middle of a memory, but something is missing.  I have so many moments like that this year.  Our daughter will be graduating from 6th grade and transitioning to Middle School. Our son will be graduating from 8th grade and transitioning to High School. Our oldest boy, he has fell in love, turned 16, gotten his learners, learned to drive and went to Junior Prom. Later this year he will get his first job, his drivers license and attend the Candle lighting ceremony to transition into his Senior year. That’s a lot of memories to miss out on.

Maybe its just because I am the mom, doing what mothers do and worrying about my children. This is a moment that only reminds me of all of those moments to come, the ones when my children will be heartbroken that their father is not there. One day there will be weddings, and a sweet little girl with no father to give her away. Then come the grandbabies and no pawpaw for them to cuddle and play. I cant even begin to imagine what feelings these children hold inside. I only think maybe, just maybe these thoughts don’t cross their minds. All of these thing have come so quickly, its not even been a year since you’ve gone. I know you’d be proud of them, they have so much of your personality in them.

Fairytales Do Come True

See those children I speak of, they lost their father just 9 months ago. It wasn’t some freak accident or another unexpected tragedy. It was to addiction, drugs of evil consumed him way before his time.  One boy and I are the beginning of this tale, the heart of the pain and it’s not easy to tell. It most certainly started a story of fairytale sorts, yes the kind that start off Once Upon A Time. This man used to dream of a girl, a faceless girl that always brought him peace, comfort and protection. He talked in such beautiful words describing the way that he felt and the visions he would see. He had lots of time for day dreaming as he was a trucker you see.

As fate would have it, their lives would cross paths, one of those meetings that you know someone greater than you had a hand in. From that moment forward he knew she was the one. She was young beautiful and he was a wild dirty trucker who thought he never had a chance. Little did he know that she was crazy in love with him too.  As the days go by, she discovers his book, the stories he’d wrote and how she took on a new look. The dreams now showed a face and that face it was hers. She never really understood the depths of his love, but she never needed too. It wasn’t long before a child was on the way, the first born a son. Suddenly this man changed in a way no one ever expected. He no longer wanted to be just a wild dirty trucker. He wanted to have a family. He proposed and they were married. their family continued to grow and before you knew it there would be three.

Whiskey Lullaby

It would seem life was going well for the lovers, family that is healthy and happy, thriving job, you would think they had it all. Greed began to set in as he liked the money and what it was providing them with. He thought to himself, what does it hurt to take a little stay awake hit. One pill turned into two and two turned into three. Money started going missing and there was no explanation. Bills not getting paid and come home less and less. He started wanting to send the kids off to the grandparents and throw parties with the young 20 something neighbors on the days he would be home. It was this very behavior that finally gave away to the truth. This young bride and mother of 3 was now watching the man she had loved for 9 years of her life turn into someone else completely. He wanted to be drunk, and was flirting with girls and then it came…Whose got a line of Coke!

A shattered girl turned and walked away, into the darkness of the night, she walked and walked hoping that her nightmare would go away. It didn’t seem to matter how much she walked, the ugly truth awaited her at home. She made a decision not to bring it up that night. She kept it all in and waited for him to leave on the road again. If you are familiar with addiction, you will know that he didn’t even realize there was a problem. Over the course of the next month she tried to talk to him about the missing money, and the unexplained charges and past due bills. She knew the money should have been there, but it was nowhere in sight. He came up with lie after lie trying to just cover up the truth. Eventually he grew tired of her nagging and accused her of cheating, that had to be the answer to all the money missing and she was just trying to blame him as cover up. Frustrated and broken, she gave him one final ultimatum, come clean or she was leaving! He made his choice and told her he was cheating and that’s what it was. She packed her things and left that day.

The Beginning Of The End

I guess he never thought it would drive her away, I guess addicts don’t think about the consequences of a lot of things. You see, he still really did love her, a love so deep that her walking away was going to be the death of him and not even he knew it. He never really knew how to deal with pain. Alcohol and recreational drugs were the answer to that. He put all that behind him when he became a family man, the moment she said, I’m Pregnant, he turned away from everything without even a blink of an eye. Suddenly he was thrust into a world of hurt and pain like no other. He had not only lost his wife, he lost his family, 3 beautiful children that were his world. It was a heartache they didn’t make a strong enough fix to hide. The day he came home, and found her gone, he started going harder and harder on the drugs. It was pills and cocaine and pot and alcohol, every single day. He stopped seeing his kids, and even his own parents for a while.

He jumped into one relationship after another with someone who could provide him with yet another drug to cover up the pain. Each time they failed miserably and each time she came to the rescue and  helped him back on his feet. She tried so many times to get him help, to offer him help, to even take him back in order to help him get his life back. It didn’t matter, by this time he was to far gone, he was addicted and now it was even harder to cover up the pain.  Then his father passed away and he spiraled out of control. The man who can’t deal with pain, suddenly couldn’t find a reason to live any more. It seemed that from this moment on it was all about trying to find what drug would finally end it all. He went to jail, was in and out of rehab and she still did everything she could to have his back along the way.  She tried to show him he was still loved and cared for and that he had a reason to live.

The day tragedy struck

He pushed her as far out of his life as he could, he did everything in his power to make her hate him and, Trust me she did. He was on Meth so regularly that it became difficult to tell when he was and wasn’t high. It just took more and more to kill all those feelings that never went away. It was now showing in every way that he had destroyed his body. She tried to tell him to get help, see a Doctor, anything because if not he was going to die. He told her every time, “Nothing can kill me.” Then came the day she got that phone call. Even though she knew he looked like death, it was still a shock she will never forget. “Jim is in the hospital, it’s bad, he may not make it.”  This is not a phone call anyone wants to get. Especially not when you have to turn and say those words to your children at 11, 13 and 15 years old.  She thought She was going to hate him forever just because she was going to have to say those words to his kids.

She anxiously awaited news of his status and prepared the children for the news. The call comes in and its still bad, he is headed to Abingdon hospital. That didn’t last long, he is on his way to Johnson City. By the end of the night all we knew was he is in ICU and on a Ventilator and they said it is drug related.  The next day at the hospital she walks in to see him weak and helpless and something in her heart just shifted. She couldn’t be angry, as much as she wanted too. Her heart simply broke for her children because she knew now it would be true. He came around and was taken off the vent, His children visited him and he struggled to share some private words with them. Then he listened as the Doctors talked to his mother and her. He had gone for a long enough time and done such a large amount of drugs that it had destroyed his body. His heart was in no shape to survive among the many other issues he had.

He didn’t believe the Doctor when he told him he had 6 months or less to live.  In fact he argued then that nothing could kill him, and he would walk out of the hospital. That night he would be on a ventilator again. It seemed like forever that this continued and finally people started asking for decisions to be made. His mother didn’t want to do this even though we all knew his wishes. I talked the Doctor into getting him off the vent one last time and making him answer those questions. They did, and oddly enough it turned into a wonderful day for him. He told them no more vent and he didn’t want to be on machines and to list him as DNR. He still told them he wasn’t dying though. He ate like a king that day and spent time with all of his family including two special people from his past who had came to show support and love. She would sit by his side every morning and every night holding his hand while he cried out in pain, until the day he decided he wanted to go home.

Then your pain was no more

They told him he could only be released on Hospice and that they would get it all set up. He still didn’t think he was going to die. Upon her arrival to the hospital that morning she was told the news, he is being released to hospice, “do you know if his mother is on her way?” She contacted his mother and then began asking questions. She told them he can’t go home with her, she just cant take care of him and he doesn’t need to be around the drugs.  She knew she needed to take him home with her, so they began to set it all up and explained to him what was happening. The nurses then explained to her that he didn’t have 6 months, they would be surprised if he made it 2 weeks. He once again had a wonderful day, he enjoyed time with his children and had some long over due meaningful conversations with her. He told her not to feel responsible, but that he was sorry he didn’t do better. He was sorry he ruined his family and he was most of all sorry he didn’t know how else to deal with the pain of losing them. He told her in all these years, its always been about covering up the pain of losing them. He loved her so much, that he couldn’t face what he had done.

Over the next 3 days, he quickly faded, but she knew in her heart she did the right thing. He finally had his family back, and he found peace in her forgiveness. She took care of him and provided him with that place of peace, comfort and protection that he had long ago dreamed of. She still isn’t sure if it was confusion, or the heart talking, but in the final days he needed her, her asked for her and he found comfort in her. She was his wife again and he referred to her as so. He went to sleep peacefully with her by his side holding his hand. The next morning, she new this was it, and she called his mom to come. They talked with the children and they all surrounded him with love. She held his hand and wiped his forehead calmly reassuring him that it was okay. He took his last breath and she kissed his cheek and whispered I love you.

Suffering of an addiction

This didn’t put an end to their pain, it simply was the beginning to a whole new pain. She didn’t know how to feel after losing him. She didn’t understand why it hurt her so bad. She felt for her children, but she didn’t understand why she felt more. Slowly she learned that it was all meant to bring a sense of peace. She feels him with her often and always in times when she needs guidance and comfort. He is protecting her now. She feels sad for the memories that he wont share in, and she wants their story to live on in the children. She has vowed to share only the love and the good so his grand children will know the man he once was. His children will grow older, and every day look more and more like him. They will move on to become someone and his memory will live on.

His name will not be forgotten, and his death was not in vein, he sacrificed a great deal, because he offered his life for her to understand the precious value of real love. See she never really understood it, not until those final days. She always wondered why she wasn’t good enough, and how a father could abandon their child. Now she understands his pain, and knows that even though he was weaker than the love, his love was real and true. She understands now that she has value and deserves a love that’s grand. She knows he found his peace and his life ended just the way he had always wanted it too, by her side and holding her hand