Marshal Castillo
In Memory
In memory of Marshal Robert Castillo
MARSHAL ROBERT CASTILLO
We wanted to give a special mention to Payton Castillo for her daily awareness updates during May EDS month 2020, sharing her intimate and often emotional thoughts losing her husband Marshal to vascular EDS in January this year at the young age of 33.
Payton you are a strong and amazing person and on behalf of all the vEDS community we thank you for sharing your stories.
We would also like to take this opportunity to thank you from the bottom of our hearts for the very generous donation of $1,200 received from yourself and your grandmother Norma Gordon. This will go a very long way to helping others touched by vascular EDS including research and support.
This page is dedicated to Marshal Castillo.
AUGUST 5, 1986 - JANUARY 3, 2020
DONATE
Day 1: Ehlers-Danlos Awareness Month
Friday marked the first day of Ehlers-Danlos Awareness Month. With May 15th being Vascular EDS Awareness Day. I am going to take the challenge to post daily on vEDS and Marshal’s experience the best I can through my eyes.
Day 1: Meet Me, Y’all know me I am Payton. I’m a daughter a sister, a nurse, dog mom to the best standard poodle around and I was blessed to be the wife of the most amazing man for almost 9 years. This year tragedy struck and unfortunately that amazing man is no longer physically with me.
I am choosing to do this challenge for many reasons. Journaling, writing and sharing Marshal’s life with others is therapeutic for me and something I feel a constant urge from the Lord to do. I want to raise awareness for vEDS. To continue to tell Marshal’s story. Maybe someone will see it that is struggling with vEDS and find hope. Maybe someone struggling with grief will read it and see God’s Glory. Marshal’s life was taken much sooner than I ever wanted. No choice was given to me on that.
What will never be taken though our the memories, his stories and the legacy he left behind. Marshal’s story is a story to be TOLD. It is a story of trials, hope, redemption, inspiration and faith. God used him in BIG ways to shine his glory while he was on this earth. I have no doubt he will continue to use his story. He was and always will be my biggest inspiration my reason to keep pushing and not give up even when I feel like it.
If you feel so inclined to follow along with me this month, learn more about vEDS and my beautiful husband and our story please do so. Also I will be sharing a link to donate to vEDS this month each day! This is an amazing charity I have followed since 2014 ran completely by volunteers and donations! They do a lot to raise awareness and research for vEDS
Day 2: Paris Proposal
Just two kids smiling from ear to ear. This was the night Marshal proposed our second night in Paris on top of the Eiffel Tower. I was floating on cloud 9 here. He set the bar with that proposal and made sure I was floating on cloud 9 everyday through our marriage.
My Story - I am choosing to share Our Story here. This story just barely touches the surface of us but it is a start. This sure does not show the magnitude of all Marshal endured, conquered and accomplished in his lifetime. Which in just 33 years sure was an impressive amount! It is hard to know where to start to begin his story.
There is so much to it. It is something I have been working on though. I have been writing a lot, organizing pictures, memories, stories I want to remember it all. Right down to the two little black socks by his side of the bed every morning. I picked them up every morning or evening and laughed that I could always count on them being there. Never making it to the hamper. I miss even those little black socks.
There's incredibly so much to miss about Marshal he was such a large piece of who I am and most definitely is still shaping me in who I will become.
As I gather those thoughts I may one day share for now I leave you with a snippet of our story.
Day 3: Ticking Time Bomb
Looking at Marshal you would never know the list of medical concerns and diagnoses he had. I listed his medical history and diagnoses. Knowing him and his story would inspire you.
The way he choose to live, his positive attitude despite his circumstances and his drive to live everyday to the fullest. The road here was not a walk in the park. He had bad days. Days where he could not get out of bed because of the pain or he was sick.
The physical aspect of it was extremely difficult but the mental aspect he had to overcome I would say was just as difficult if not more. Of course there were days he was overwhelmed, scared, anxious, frustrated, angry, and saying why God is this my path??
Who wouldn’t do those things its a very normal human response. He was never down for long though and always picked himself up stronger. If he was having a bad day I had his back always lifting him and encouraging him. If I turned around the next day upset and scared he was always there to do lift me up. We worked well like that. We were always able to step up be strong and put on brave face for each other when we needed it the most.
God knew exactly what he was doing putting us together. We needed each other. I watched him from very early on decide he was going to make the best of his situation and the most of the life he had been given. He choose to trust God’s plan even though it was unknown and scary and live each day like it may be his last.
He told me many times in the last few years getting sick became one of his biggest blessings. Because otherwise he would have never have the outlook he did on life. He saw everyday as an opportunity to grow, love and create through the lenses most people will never get to experience. To him that was beautiful.
He choose to see the good, the positive even though that was hard somedays. I watched him do it everyday with such grace and that was my biggest blessing. Watching him flourish and grow into the amazing husband and human being he was.
They say people with vEDS are like ticking time bombs.
Day 4: What a “flare up” looks like for me?
I will for sure be using this challenge also as an opportunity to post some favorite pictures of my handsome husband as well!
Flare ups for Marshal manifested in all sorts of ways. Some more common things that would happen are bruising. This was a pretty frequent occurrence for him most of the time we would not even know what happened or how it got there but bruises were a pretty consistent thing. His veins would burst frequently as well. Mostly on his hands, arms, feet and sometime his legs.
He might scrape up against something or hit that area in a certain way and his veins would just rupture. We would always know immediately when that happened. It looks like when you are starting an IV but then the vein blows. Those areas were always puffy, painful and for sure to bruise! Just like those veins the ones in his mouth would also sometimes do this. These were the most painful. I have never seen anything like it. They would be the size of a penny and you can’t get comfortable with something like that in your mouth.
All of these areas would eventually heal on their own. That is another thing with vEDS healing time is slower in these patients. Migraine’s and vertigo are flare ups that would usually have him down for a few days. The migraines he just usually needed to sleep off. The vertigo was very debilitating it would come on fast and all he could do was lay down. It would get so bad he couldn’t walk from being so dizzy and the nausea and vomiting that came with it sucked. I can remember having to hold him steady sitting up in the bed when he was nausea so he did not fall over. Thankfully these episodes were not as frequent but they were also unpredictable when they did come on.
He knew he was in for a rough few days. Chronic pain is a big one. Something he just learned to live with daily and make the best out of it he could. He never wanted to be on pain medication for it in his daily life. So he found other ways to cope and deal with it. I feel like his pain tolerance was higher than most people. God equipped him with strength that I had never seen before.
More severe and scary flare ups were things that always warranted ER visits. With vEDS it can be easy to want to run to the ER for everything because it could be life threatening. I wanted to go more often than him we waited a lot of things out at home. Marshal knew and learned his body so well and when he said it was time to go the ER it was always real and there was always a very real reason behind needing to be there. Some of these more severe flare ups look like the pneumothorax in his left lung, spontaneous bowel perforation, spontaneous hematoma’s both about the size of a softball one time in his pelvis the other time in his hip.
Spontaneous bleeding and organ rupture for literally no reason at all is a terrifying thing. The two times he got the hematoma he was just at home watching T.V on the couch when all of a sudden his pain was a 10. With all of these different types of flare ups Marshal for sure had some difficult, trying and painful days. I can say though without any doubt he had more good days than he did bad. He choose to get up everyday and see at as a new day to begin. He spent the first 27 years of his life not knowing he had vEDS. He had bruising, breaks and accidents before then but nothing like his big event in 2013 of his small bowel rupture.
He sure lived that life to the fullest! Before finding out he was at his dream job as a bomb tech (EOD) in the army, traveling the world and building a life for us! After his career path and entire life changed, but we didn’t let that stop us. We still traveled and lived our lives to the fullest. That first year we knew we had two choices. He said I could lay down, give up, and waste my time feeling sorry for myself OR I can get up everyday choose to live, choose to not waste the time God has given me and make the absolute most out of it. He choose to get up and live and oh how he lived. He is a beautiful example of how everyone should live their lives daily.
To the fullest, without regret and making time to follow your dreams and show the ones you love how much you truly do.
Day 5: My flare-up toolbox
So how did Marshal keep on smiling like he is here in this banana suit on “flare up” days!? Side note because the banana suit needs to be addressed.
This banana suit traveled the world with him you never knew when it might make an appearance.
Day 6: Management Strategies
Genetics are so strange. One little thing gets thrown off with your genetic make up and it can change everything. In Marshal’s case and with vEDS it is the COL3A1 gene. I will not get technical here but something like just one gene throws off your entire genetic make up. In this case it is of their connective tissue. Which is everything we are made up of, our skin, our vascular system and all of our organs.
It made it to all the right places but it is not as strong and is aging quickly causing this connective tissue to weaken at rapid rate. Unfortunately there is not a cure for vEDS. We cannot go in and change peoples genetic make up. So all we can do is gather knowledge and manage it and symptoms they have to give them the best quality of life possible.
One big concern with vEDS patient is organ rupture specifically their hearts are a big concern. When Marshal first got his diagnosis one of the first things we did was imaging of his aorta and heart. He had an out pouching already developing that was noted in 2013 from his hospital stay he had not been diagnosed then. In 2014 when he did them again that out pouching was still there concerning and warranted to be watched.
One of the things the cardiologist suggested was blood pressure medication. To keep Marshal’s heart rate a lower so it was not working any harder than it needed. Studies at that time had been done with vEDS patients but no guaranteed results just something we could try. He did that for a year and his next years scans showed significant improvement of the out pouching. While we were both grateful for these results Marshal was done taking this blood pressure medication.
It made him feel very tired all the time and sometimes dizzy getting his heart rate so low. He said for him it was disrupting his overall daily quality and he was not willing to sacrifice that when it could not truly guarantee anything. He truly had come to peace that his time here on earth looked different and was numbered. As all our lives are numbered but he was just very aware of his time daily.
I was very aware as well to but didn’t like to think about it nor had I come to peace about it. To him the value of his quality over the quantity was more important. I respected that to the fullest. He got off the medication. We continued to get his imaging every year. Being the nurse I am you know I was measuring that aorta out pouching and comparing side by sides every year. He never even looked at it but I knew it backward and forward.
To my great surprise his out pouching had minimal changes in the next few years even without the medication and he felt much better off of it. This is just one example of a management strategy that turned more into a just watch and wait strategy. A large amount of things in this life our out of our control. We sometimes only have control of the attitude we have and how we approach our situation.
So if you have vEDS or maybe you are struggling with something else physically or mentally. Just know you are not alone and what works and what does not can vary greatly from person to person. So give yourself grace, follow your instincts and do what’s best for you. Then find peace in knowing that its ok if it seems to look different from everyone around you. God had a plan for each one of us.
Day 7: Misconceptions I’ve Heard
I would say the biggest thing I heard with Marshal were always “But you don’t look sick” I would not call having vEDS being “sick” it is more living with a chronic condition this can lead to many other issues but the main cause always stemmed back to vEDS with Marshal.
Marshal’s medical record and his history is quite extensive. The first time we met any of his doctors after they had read his chart and then he would walk in. They would literally be blown away. One doctor said “I did not expect you to be walking in here by what I read from your chart.”
The biggest problem with this misconception I found through the years always landed with ER visits. He did look good I mean he sure was handsome and he was young and it always took a lot of explaining to be taken seriously. His pain would be pushed off, ignored a lot of times like he was drug seeking. This was extremely frustrating. The old saying don’t judge a book by its cover applies here. I would love so much for awareness of vEDS to be out there in education especially with ER physicians.
That when they hear a patient say those words Vascular Ehlers-Danlos that their ears perk up. That they take them seriously and know serious pain in these patients could mean serious life threatening complications that warrant immediate attention.
They call them zebras because most diagnoses take a while to get and they are hard to figure out. In a lot of cases it takes something catastrophic to lead to a diagnose. They are not the usual nor the obvious answer. In Marshal’s instance he was the first diagnosed in his family. His mother and sister had passed away from vEDS but it was never explained this “once in a lifetime” situation.
Marshal had his first life-threatening event in 2013 and still was not diagnosed for over a year. The genetic doctor said there is only so many once in a lifetime situations in one family.
Something I pray for in the future is just simply more awareness and education for those who will be taking care of them when their “catastrophic event” occurs.
Thank you all who continue to read and about my husbands story and be educated!
Day 8: Passions
Marshal’s passion for life was contagious. If he wanted to learn something there was nothing stopping him.
After his world got flipped upside down in 2013 he did not let that stop him. Instead that was the very thing that motivated him to live each day like there was no tomorrow.
He was the one man wonder and could do anything he set his mind to. He loved working on his 71 Chevelle which he completely rebuilt from the ground up including the motor swap all self taught. A lot of patience and years later he had something to be proud of. He loved traveling and he did travel all over the world.
He was the best dancer I have ever known personally. He could make you belly laugh and believe any story he was telling. He had so much knowledge but also the wildest imagination. When he was in the army he was passionate about being in EOD (bomb tech).
That adrenaline junkie was born for that role. He was forced to medically retire and that dream he had was gone. After almost 10 years in the military, he never had a plan B. So he was starting over fresh not knowing what he wanted to do. So he started to try several things that had always interest him. He learned to play the guitar, he took singing lessons, learned to weld. Took a metal shaping class.
He began to draw and paint something he had never done before. Took art classes and God unlocked this amazing talent and in a very short amount of time he became an amazing artist. He put a lot of hard work into it.
Marshal was never going to do anything halfway. He was going above and beyond on everything. He even became a tattoo artist! So many passions he could truly do it all, and he did. I always respected and encouraged him to do everything he wanted to do.
Life is to short not to follow your dreams. Here are some pictures to enjoy of Marshal’s passions.
Day 9: My Support Network
Marshal’s support network stretched from me, to family and his friends. He had a lot of people who loved him and were cheering him on. I never left his side and my family was right behind me encouraging us and lifting us up along the way. His brother and two sisters were a stream of a support even living on opposite ends of the United States.
His brother and him were always joking around and I know he was always grateful for their conversations and when he came to visit. His two sisters and him had the bond I believe made them even closer after all being diagnosed with vEDS.
A bond they could only understand. I think they all brought each other a form of comfort and peace. Marshal also had a few strong friendships that survived the years of his struggles that he was eternally grateful for.
With vEDS it is so important to have a strong support network. To be surrounded by people who encourage, love and lift you up.
Day 10: Adaptions I’ve Made
Just like in all of our lives circumstance are constantly changing. Whether it is good or bad we all have to learn to adjust and move forward. vEDS is no different then this.
Getting this diagnose will cause the person to adapt and change in many ways. For every physical way Marshal learned to adapt. He at the same time was overcoming mental and emotional adaptions.
One of the biggest changes he had to make when finding out was saying goodbye to his career. A career he had planned to be in for the long haul, a career he identified a lot with. Up to that point his career had shaped him into the man he was. Who was Marshal without the Army? This was huge adjustment for him and took a lot of soul searching to figure out. In the end though this path led him to try and do some amazing things.
Maybe he never would have or taken the time to do. As a huge chapter of his life was closing a new one was beginning. I could have never imagined what God had in store for the next 7 years. How beautiful this next chapter would be for him, for both of us. It didn’t look like we had planned. It came with many trials and difficulties. We both adapted though and took it as an opportunity to live our biggest and best lives with one another. That is a blessing God gave us.
Day 11: My Happy Place
Marshal’s happy place 100 percent without a shadow of doubt was our home together. We lived in four homes together throughout our marriage. The last one we bought in Chattanooga together was our dream/forever home. He was so beyond proud of that house.
It was our little “harry potter’ nook with the most stunning views of the mountains. You could always find Marshal working on something in the yard, or stacking rocks in our rock garden. He loved to sit out by the koi pond that was his “zen garden” he would say. He also spent a lot of time in that huge garage that was perfect for him and all his projects and cars.
He loved taking naps with zephyr on the couch. Our living room was our chill zone. So warm and cozy we both loved spending our evenings together there. So much of his artwork was created here over the last few years!
It was a beautiful home and I am glad we got to share that happy place together. It seems short lived in the grand scheme of things only two years, but I am still grateful for those two years in that home.
Home was always wherever I was with him.
Day 12: Favorite Activities
I have talked already on Marshal’s passions, and his love for life. Some activities he enjoyed the most after his diagnoses are definitely walking and hiking. He loved to be outdoors. Taking our sweet zephyr on walks. He would take him on a walk almost everyday in our neighborhood and I always loved to join him!
He also got involved with doing a little yoga with me. Keeping things simple, light with plenty of modifications and props to adjust to his bodies needs. He still needed to be careful because tearing of his muscles was something that could happen very easily. It’s just about knowing your bodies boundaries and limitations.
Having vEDS I believe gave him a hyper sense of awareness with his own physical body. He loved my dharma yoga wheel. He had got me it as a gift, but it turned out to be what he needed in his life. He stretched out on that wheel every single night. Yoga was good not only for his body but for his mind.
Marshal got back to his Cali boy roots a little and started skate boarding some! He for sure tried to push his physical boundaries on more than few occasions with trying something new. I always let him though at least give it try. Then state my thoughts about it after. We always came to the agreement that those things were not the best idea.
Some things you just got to find out for yourself through trying. I never wanted to discourage him, I did believe he could do anything he set his mind to. The question sometimes was “but should you though?”. Also biking and swimming were low impact activities that were easy on his joints. Marshal joined the wounded warrior games in 2015. He competed in Texas for swimming and biking. Turns out he was a really good swimmer (I was not surprised).
Unfortunately he was unable to complete the competition because he developed an injury and had to be hospitalized a few days before coming home. Still he tried it and learned from his experiences. Came out of that trial just as every trial stronger with more knowledge. He spent a lot of time outside in the yard maintaining and keeping it beautiful. He had to be careful with the activities he chose.
Day 13: Friends
Friends sure do make the world go round.
Great friends enrich our lives, make us laugh and call us out when we need it. Marshal had many stages of his life and with that came many different friendships.
Some lasted through time, some drifted apart.
Whatever the case they served a purpose, a place in his path and his heart. I know he was grateful for good friends.
Day 14: Favorite vEDS life hack
If Marshal was here today he would no doubt say “LIVE YOUR LIFE!” I think this was his biggest advice to anyone if you have vEDS or not. Do not stop living, striving, challenging yourself. Do NOT give up. FIGHT for what you love, don’t settle for anything less than what brings joy to your life.
DREAM BIG! Show the ones around you what they mean to you. If you love someone tell them, show them not just somedays, but EVERYDAY!
Be more present, with yourself and with others. Enjoy the blessings God has given you on this earth, because they are fleeting. Soak it in like sunshine because time marches on.
Don’t look back with regret, but look forward to what opportunities you have been given. Each new day you have is a blessing.
This is my husband, my Marshal, and how he choose to live. These are lessons we learned together, and he showed me along the way through his actions.
We were better humans because God allowed us to have each other. He wove our story together beautifully because we both needed each other. We grew so much as individuals, but also together and we LOVED unconditionally.
I’ll carry these lessons with me every day here on this earth. Our love will always be right here in my heart. Best life hack and advice…live your life big, beautifully, and boldly. Tomorrow is not promised. Live like Marshal.
Day 15: Halfway through the challenge!
Today is Vascular Ehlers-Danlos Day!! Wear red today to show your support of vEDS and spread awareness.
We wear red for Marshal today!
We miss you, we will continue to tell your story, and raise awareness for vEDS. I will love you for all of my days, my heart, my king, my Marshal we wear red for YOU!
Day 16: Most Challenging Symptom
Out of all the challenging physical symptoms that can occur and that Marshal lived with I have to say the mental game was the most challenging. I think he would agree.
To think you are a healthy individual most of your life (with just some bad luck injuries) then BOOM mid 20’s get the diagnoses of vEDS it is a game changer. I remember first reading about vEDS thinking no Marshal does not have this no way. My mom first sent me information on it (she’s a nurse to).
I told her no way with all his surgeries in life he wouldn’t still be with us if he had this. I did not want to believe it. The day we went in for the official diagnose at Vanderbilt in 2014 they talked about life expectancy, risk of passing it on to children, other options for having children. We both left that office in a mental fog and blank stares. It was a lot to process.
We were almost 3 years into our marriage and just touching the surface of this thing called life. That day changed a lot. Up to this point the challenges, injuries and near death experience changed us but this was like a punch in the gut.
We had explanations, we had answers we were looking for, but we didn’t leave there satisfied with the outcome. The fact that there was no treatment, nothing we could do, and our “life plan” was completely turned upside down. Marshal was dealing and processing a lot, with his past, his family and his current situation.
The sleepless nights, anxiety, worry, “what ifs”, when will be my time, how will it happen, what’s going to happen to my wife, should we have kids, all the “whys". These were are all daily mental battles he was struggling with. It was a mental battle for me as well as his spouse. I just wanted him to be ok, all I could do was love, support, encourage and lift him up through this journey. I wanted to make it all better, fix it but it was out of my control. I had never felt so out of control in my life.
The one thing we could do was give all are worries to the one who knew them before we thought them into existence our God! Marshal handled all of this with such grace.
He managed to overcome these battles and demons and lean into the Lord. He became at peace with his path, stayed positive and never made excuses. His struggles grew him into the man he was. vEDS did not define Marshal but it pushed him out of his comfort zone and grew him in so many ways. He soared in ways he may have never known possible.
Of course he would have days of questions, getting upset, feeling anxious. It always passed though and he faced each new day stronger than the one before. He loved harder, gave everything he touched 100% and lived in every moment.
I have never been so proud of someone in my life. He is my forever hero. Until the very end Marshal…and still I will love you more.
Day 17: 5 things I’m grateful for
Marshal had a lot of things he was grateful for on the daily. He would say “I woke up this morning. I’m alive. I am grateful for another day!” So much of our attitudes are based on our own perspectives. What do we choose to see or not see?
Can we see the positive or are we mostly negative. Are we singing praises for all the Lord has done or are we complaining of everything he has not done. This is not easy to do everyday.
Choosing to try and do your best everyday is all you can do. Your attitude can change a lot. Narrowing down 5 things Marshal would say he was grateful for I’ll keep it simple.
1. His life that God had given him.
2. Our Marriage, Us.
3. Family/Friends
4. Zephyr
5. The great outdoors and the ability to travel.
DAY 18: Without you is hard
All the first without you are hard no matter how big or small. It is an obvious feeling that you are missing, that you should be here with us.
My mind drifts of all the things you would be saying or doing. This weekend camping was no exception on how much I miss you and your physical absence fills me. One thing I know though is that you are still with me even though I cannot see. I felt you trying to comfort me in so many ways this weekend.
Saturday before starting our day on the water I did not see a live cardinal, but the home I visited had artwork of one in the bathroom. This made me smile there is my cardinal for the day, Marshal is with me. Out riding around on the boat I was in the front not paying to much attention on what was going on behind me. I heard someone ask at one point though “how deep is it here?”, and they responded “37 feet.” I looked at my sister and said “37”, Marshal is with me.
At dinner that night one of the first songs the guy performing played was Simple Man by Lynyrd Skynyrd which always reminds me of Marshal, he loved that song and played it all the time. Then one of the last songs he played was Lady May by Tyler Childers.
All November and December Tyler Childers was all Marshal was listening to, Lady May was the last song he was learning to play. I have not been able to listen to it, but there it was, and I thought Marshal is with me. Later that evening by the campfire my sweet friend Julia saw a shooting star. I have only ever maybe seen less than five in my life I told her. Then about fifteen minutes later mom, dad and I all saw one! What are the chances of two in a row I thought, “Thank you Marshal.”
Sunday I stumbled across this really cool garden I didn’t even know was in the campground all weekend. Everything about that garden made me feel him, the warm breeze like a gentle hug. The big beautiful pink peonies like he used to pick me all the time from our backyard in Clarksville. I just felt him, and I felt a few tears flow down my face and I said “I love you Marshal.”
I believe God gives me all of those little things, moments of comfort, peace to remind me he has not left me, and neither has my Marshal.
Day 19: Support / My Biggest Advocate
I can say without arrogance or the need for recognition and praise that I was Marshal’s biggest advocate and number one support. I was his number one fan in everything he did in life. If he set his mind on something I was going to be there to support and encourage him. He could do anything he wanted, and I believed that. His time was precious and I wanted him chase all of his dreams.
God gave me my forever love, once in a lifetime, head over hills, scream it from a mountain top kind of love with Marshal. I felt so incredibly blessed to be his wife. I still feel insanely blessed for the time I had with him even though it was cut short. Our memories, life, and love we shared continues to carry me and I know always will. Through all of our hospital stays I never left his bedside. Our 30 day stent in the ICU at Vanderbilt my family and friends quite literally had to make me leave the unit and go outside. Which I only would if someone I trusted was sitting with him during that time.
I remember one of the ICU attendants sitting down with me one morning telling me I also had to take care of myself. We probably had been there about two weeks. She said you need to rest, because when you leave here is when the real work begins. That is when you are going to need to be strong, that is when he is going to need you the most. Beautiful advice from her that I took to heart.
After going through many of the different trials and challenges of health issues. I became his caretaker for a while when he needed it most. I quit my job to take care of him, he was my number one priority. It was not an easy task physically or mentally to be taken care of by me for him. In the beginning he had a lot of guilt and felt like a burden.
The mental struggle was real. It is no easy feat going from a strong, healthy mid 20’s guy back from a year deployment, to needing help with something as simple as taking a bath. So I made it very clear I was not going anywhere, we were in this together and that my biggest blessing was to be able to take care of him in these moments. That was the truth, it is truly how I felt.
I felt God had been preparing me for that moment to step up, use my nurse skills to love, lift up and take care of the most important patient I would ever have, my amazing husband. That is what I choose everyday. Through the years I went to the appointments, helped him keep things in line, and was always his biggest advocate in the ER triage room.
That feeling of being a burden melted away soon enough, and what was left was the incredibly strong foundation of marriage we had.
Even now he may be physically gone from this earth but I will continue to be his biggest advocate. I wanted to share a few things if you would like to check them out. In 2015 he paired up with a singer/songwriter program in Nashville for veterans. He wrote me a song and I was able to watch him perform it playing the guitar with the singer/songwriter.
Day 20: A photo I love
This is an easy one. I love so many pictures, but this is one of my favorites. It’s simple our little family sitting on the couch, enjoying this moment.
My sweet friend Katlyn snapped this picture in 2016 on a beach trip we were all on together. I have always loved this picture of us. Marshal’s look, his little smile, just a really happy memory.
This journey with Marshal and the trials of vEDS at times could leave me worried, anxious, and scared. Now the journey I am facing losing him to vEDS also feels scary, broken, confusing and sad at times.
I choose to give all this to the only one who can handle it, Jesus. He has brought me here and he will carry me through whatever plans he has for me. I leave ya’ll today with an excerpt out of a book I have been reading that has brought me a lot of comfort during this time {thank you Courtney}.
These few sentences spoke to me so much today, because they are so relatable to me right now. “Hope is our great expectancy that we will know Him in all of our circumstances, even the seemingly hopeless ones. To expose me…It lays me bare and vulnerable because I can’t fix this and I can’t control the outcome.
My hope puts me right up next to Jesus, torn open and defenseless, completely at his mercy, completely surrendered.” {Daring to Hope-Kaite Majors} I choose to hope today, tomorrow and even on the days hoping feels complicated and hard. My hope is in Him.
Day 21: Raising Awareness!
This is EDS awareness month, and that is what I have been trying to do all month long, raise awareness!
It is something simple, the act I choose to do this month was the photo challenge. I have been using this as a way to tell more of Marshal’s story and his life experiences living with vEDS. Hoping the way he lived will inspire others living with vEDS.
It is a challenging journey but YOU to can have a beautiful, fulfilled life. Even if you are a healthy individual I believe you can be inspired and learn so much from Marshal and they we he choose to live. My other goal this month is to get more information out there of what vEDS actually is and the range of severity it can have in an individual. This small act has lit a fire within me in way, to maybe one day do something more.
For everyone who has followed along these last 21 days thank you. I appreciate all your love and support, and taking the time to learn about the life of my rockstar husband Marshal, while getting educated on vEDS.
10 more days of this challenge to go!
Day 22: Pets I love
Well you know this has to all be about our boy Zephyr. Zephyr was Marshal’s best friend they spent so much time together.
We got Zephyr just a few months before Marshal’s first big event in 2013. When Marshal was coming home from the hospital with all his tubes, and wounds I was not sure about having this new puppy.
Would he even remember us after a month being gone, would he jump all over Marshal?
He didn’t though it was like he knew and was just so sweet and gentle with him. Zephyr brought us so much joy in some of our darkest times.
When Marshal was coming out of his coma, and very confused the one way I could get him to crack a smile was a picture of Zeph. He was always there for Marshal making him smile on day’s he didn’t feel like it. He took him everywhere he went, hundreds of walks, and so many hours outside together.
Zephyr has been mourning Marshal just like me. He is a very special dog who has been though it all with us every step of the way.
Even now this sweet boy is helping me through all of this in more ways than he could possibly understand. I can hear Marshal saying “Zephyrrrrr boooo, zephyr booooskiii, you ole scamp” so clear.
I know he is looking down and glad Zeph is being so sweet and comforting me! We sure miss our Marshal so incredibly much. I have hundreds of pics with these two, but I narrowed it down to some of my favorites.
Day 23: Sleep Routine
Well I wouldn’t call what Marshal had a sleep routine. One thing he struggled with is to sleep, and get a good nights rest. Sometimes this was because of pain, but mostly I would say it was because his “mind was racing” as he called it.
He usually always had to get up early in the morning with the stomach issues that came along with only having a few feet of small intestines. He could fall asleep on the couch watching T.V., but when I would get him up to get in the bed, that was it he was up again. He said his mind was just always racing about things he needed to be doing, wanted to do, projects he had going, and future plans.
He sure did have a lot projects, things he was doing and planning to do. I admired so much his drive and passion for everything he touched in his life. Watching him fueled me to be my best self everyday. In the beginning they wanted him to try prescriptions, after his first hospital stay. He never took them, he was not interested.
Another complication from losing most of his small bowel, this is where medication is mostly absorbed along with water intake. So I do not believe by mouth medications had time to absorb in his system to have a true affect on him. Another reason pain control was so difficult. We did try more relaxation techniques with him.
He would sometime take melatonin gummies, he always stretched out before bed. I would diffuse essential oils, massages at bedtime for his shoulders and low back which always seemed to be hurting.
We tried a sound machine, cbd products, made sure he had the most cozy, cooling sheets around. Some of these things did help, but I would say for the most part he did not sleep very much. He was to busy thinking about what he needed to get up and accomplish.
Through the years I took so many pictures of him sleeping, I am not sure why really. He just looked so handsome and peaceful when he did. He slept with his eyes partially open which is actually a symptom of vEDS.
When we first met I thought he was messing around with me I remember being like “hey are you awake?” Then I could see his eyes rolling around and was like what in the world?
He said he had done that since he could remember someone first telling him that he slept with his eyes slightly open.
When he was in the medically induced coma, one of nurses asked if I would like them to tape his eyes shut? I said “definitely not” I did not like the idea of that. We had some eye drops we could put in if they were looking red or dry.
Through the years I would say Marshal’s very best sleep I would ever see him have was napping on the couch with Zephyr. Days we were both home and he would be working in the yard all morning. He would come in for lunch and to watch an episode of the office.
If he could fall asleep then, that would be the hardest I saw him sleep for that power hour nap. I would always tip toe around the house, and never wake him up because I knew he needed that nap very much.
Day 24: What #Zebrastrong means to me?
This face right here, this man, my husband, Marshal Robert Castillo is the pure embodiment of what Zebra Strong is.
In his 33 years he faced so many challenges, trials, heartaches and met adversity face to face. He got knocked down time and time again, physically and mentally. He chose to get back up though, no matter how tough the battle seemed. vEDS tried to knock and keep him down, but he refused to give up.
After each new surprise twist vEDS would throw at him, Marshal would come back swinging bigger than ever before. I watched him grow so much as a person. I watched him grow stronger in his faith. I witnessed him following his dreams and pursuing his passions. His drive and hunger for life was absolutely contagious, inspiring to anyone he met, and it continues to fuel me now. Even if you only met him once he was going to make you feel comfortable, he was going to give you his undivided attention, look you in the eyes, and listen to you.
He had a way with people that was truly special. Not to mention how ridiculously funny he was. The world’s best story teller, biggest jokester, and dancing king! Guaranteed to have everyone belly laughing at the party. vEDS is a stealer of time and can be a thief of joy. He lived differently because of it. He lived larger, he loved harder, and he did not waste the time God had given to him. It changed us both.
In our marriage we choose time with each other, to be present, travel, enjoy all of the moments. We were 100 percent living for today not for tomorrow. We both felt the urgency of those moments being numbered. Even though I did not like to talk about it, or admit it. I prayed over him constantly. He had been through so much, and God had miraculously brought him through, saved him.
My expectations were high that he was going to keep saving him, that he was going to beat vEDS. My expectations, my plans are not God’s plans though. It is a hard pill to swallow, and I imagine it always will be. It is difficult, I do not understand it, nor do I expect to BUT I do accept it.
I trust him, the one who knows all, sees all and who gave it all on the cross. I know one day when I meet Jesus, him and Marshal will both be waiting to greet me with open arms, and it will all be crystal clear. For now I choose to trust, focus on the good, not lose myself if in the “whys?”, and remember all the beauty and blessings he gave me with him.
Marshal was the strongest person I have ever met. He so desperately wanted to make an imprint here on this earth and strived to every day. If you had the pleasure of knowing him I think you would agree with me that he did just that.
Marshal left a huge impact that will ripple out over time in more ways than I truly believe I can understand in this small moment.
Marshal Robert Castillo is my definition of Zebra Strong.
Day 25: Pain or Symptom Relief
I used this picture in honor of Memorial Day.
Thank you to all the men and women who have fought bravely, and made the ultimate sacrifice you are remembered!
I have touched on this topic already in Day 5.
Marshal only had a few feet of his small intestines so because of this by mouth pain medication never really worked well for him. He did get a few things prescribed in liquid form after surgeries that helped more than pills would for him. Mostly though he was into more natural forms of healing. Days he suffered from nausea his go to was ginger-ale, saltines and rest.
If he had dizziness and vertigo he needed to just sleep, sometimes anti-vert would help. To stay hydrated in the hot summer months G2 mixed with water was his concoction of choice.
For his pain management we tried all different things throughout the years. He became very in tune with his body. The biggest thing was not “over-doing” or “over-working” himself. He pushed those boundaries constantly and a lot of times pushed right over that boundary. He always knew when he did and would usually pay for it for a few days after.
He gained a little more knowledge each time though, walked away with a little more wisdom. I would say the majority of his pain was his stomach, low back, shoulders. Those were his hot spots but, generalized all over chronic body pain was also an issue. Consistent physical pain can create a huge mental struggle. It affects your emotions and disrupts your routine.
Marshal just did the best he could every day. Instead of complaining about all the things that were wrong, he counted his blessing for everything he had that was good.
He took advantage of those pain free days to the fullest!
Day 26: Movement routines that help me
With vEDS they do not want you doing to much strenuous activity that is putting a lot of strain on you heart.
Marshal still stayed active though, it made him happy and was important to him. Being active for him looked liking hiking, walks in the neighborhood, and stretching out with all the props for some yoga. These were his 3 go to’s.
If not over done these activities helped him overall feel better, physically and mentally! If you zoom in to the picture of legs up the wall you can see his large scar from his knee to hip from when he needed an emergency fasciotomy. That time it was because he feel down a flight of stairs in EOD school. This was his second surgery on his femur! The first he was hit by VW bus while in a crosswalk on the way to elementary school.
I am telling you he went through some crazy stuff! I always told him God had a story to tell and plan for his life!! I sure do still believe that, his story and faith will continue to help others.
Day 27: Favorite part of our home
Marshal had several favorites areas of our home. I would say three come to mind that make it to the top of the list. Outside in his zen garden, building his rock stacks and sitting by the koi pond is one.
He said rock stacking was his form of mediation. It took just enough concentration to keep his mind preoccupied, where he was able to focus on a task and his mind would stop racing. Just present with those rocks finding a little stillness of his mind. The koi pond, he loved the peacefulness of it out there.
It was the perfect chill zone. In our home the living room/dining room area is where he spent the most time. It is where we would cuddled up and watch a “sode” , where we would sit down to have a meal and talk for hours. It is also where he always played the guitar and would sing. All of his painting and drawing happened in the dining area, the views were everything. We loved to sit and watch the sunset from our dining room or porch.
Lastly his garage, he spent a lot of time in that garage. He was always building and creating something, because he could literally do anything he set his mind to. Going to learn to rebuild a car✔️ learn to weld ✔️make my own tattoo machines check ✔️ I am telling you anything he imagined up he brought to life, it was insanely special to witness on the daily. I have posted here some of his most recent rock stacks.
A video I got of him singing and playing guitar. His voice and him singing give me all the feels. I am so grateful for the recordings and videos I have (you can see his easel in the corner where he drew with the views). Our little koi pond, and sunset views from the dining room/back porch! Lastly, I took that video of him and zephyr when I got home from work. They were always waiting for me right there in the garage or the kitchen where he was cooking dinner.
Zeph would always whine and Marshal would have to hold him back because he was so happy I was home. Marshal always greeted me with the most sincere, big, long hug even if I was only gone for the day.
He was always glad to have me home, and I was always glad to be back home with him.
Day 28: Distraction Techniques
Mental health is so important. Anxiety and worry are feelings that will creep into your life when dealing with fear of the unknown. This can be relatable to a lot of people in many different circumstances.
For Marshal his vEDS diagnose brought the fear of the unknown front and center to our lives. For the most part Marshal handled this incredibly well in my opinion. He sure found things to take up his time. He was always making moves, on to the next.
He had numerous things holding his attention and keeping him distracted, from the one area he felt completely out of control. He always tried his best to maintain a positive outlook, and give all his worry and anxiety to the the Lord. This can feel easy most days, but then there are those days it feels almost impossible.
In those moments anxiety would take over he would always let me know. It seemed to come on fast, and made him want to constantly move his hands, arms, and legs. He was able to always verbalize to me, and realize an anxiety attack was about to take place. During these times he really focused on his breath. He practiced different breathing techniques as a form of distraction to calm his body and mind. I would just sit with him as long as I needed to. Rubbing his back, talking to him or sometimes just sitting in silence.
Just being there with him, letting him know he was not alone and never would be alone. I would always be right there by his side.
Together we were in this, and we would get through it the only way we know how, together.
These moments of anxiety usually passed just as quickly as they seem to come on. These moments were not very frequent, but over the years we did develop tools and techniques to help when they surfaced. As I now navigate my most difficult journey I sure miss my partner who always assured me it was going to be ok.
Trying to understand what “ok” looks like without my forever here on earth is sure not easy. Since learning of his diagnoses it was always my biggest fear and nightmare. I never wanted to believe it would be reality.
Now reality stares back at me daily forcing me to walk through it. Most days it is still so surreal, so unreal and hard to grasp the finality of it all. I am grateful for a loving, forgiving God who placed a loving, forgiving, supportive family and friends in my life to help me walk this path.
Day 29: Hopes for the future
My hopes and prayers for the future is simply for more awareness and education for healthcare providers.
More education could absolutely change a plan of care in a triage room and save a life. My prayer is that no more families have to live with and think “If they would have known this, or listened to me maybe my loved one would still be here?”
The “what-ifs” for the loved one left here on this earth are confusing, painful and so frustrating. I am here as a witness along with so many other families I have now met through this process of being overlooked, and in some cases flat out ignored with healthcare providers.
I am a nurse myself, I love and appreciate all health care providers and what they do for us.
Marshal did have some great doctors along the way. I just also know that the awareness and education to the right set of health care providers could truly make a difference for our future and save many lives.
I pray and hope for earlier detection of vEDS. So many people struggle their entire lives, not understanding what is wrong and being told “nothing is wrong with them”. They then have to become their own advocate, research diligently, and fight for genetic testing to finally get their diagnoses.
I want people fighting for them, believing them. Even though they may look “fine” from the outside, they need someone to believe them when they say something is not right. I hope for more funded research for treatment to help extend the lives of vEDS patients and maybe even one day cure.
I know throughout this challenge and this month God has been lighting little fires within me. I hope in the future I can continue to tell the story and advocate for my beautiful Marshal. That his story will offer hope, faith, inspiration and education to others.
I also hope to continue advocating and educating on vEDS in whatever way God shapes that to look like for me in the future. I do not have all of it figured out. I just know God has a plan that involves Marshal, vEDS and helping others.
My hopes are vEDS awareness/education, early detection, treatment and lastly a cure. Because NO hope is to big for MY God!
Day 30: Words to my younger self
I will leave this post to Marshal. I have attached a picture here of his Manifesto. Yes, Marshal had a Manifesto I mean why would he not.
My husband was full of surprises and this was one of them. I found this on our computer this January just a few weeks after he passed away.
I remember reading it the first time I could not stop the tears. This was so Marshal it was powerful, moving and inspiring. I knew I had to share it with others. That is why I printed a ton of these off to be handed out at his life celebration.
I also have this on my wall so its the first thing I look at every morning. Its motivation, live like Marshal. Also Marshal has left me so much through the years. In writing, notes, songs he has written ect. I am so beyond thankful for all of these things.
In away it is like he is still teaching me, comforting me with his own words when I need it. I also found something he had wrote down that I had not seen before until this year. I will leave his words here.
“There is a spark deep within each one of us. A spark that has the ability to ignite and change us from within with radical and incomprehensible capabilities. Some people spend their lives searching for that one passion, that one thing which allows them to search out and utilize this spark. Others spend their lives lost, lonely and scared of finding their spark. Intimidated by how it might change them.
How it could upset a life filled with dry monotonous routine. A life filled with 40 hour work weeks which push you to the edge of sanity. The only thing standing in your way is Saturday and Sunday refreshing breaks which tend to wipe your memory and prepare you for another week. Every single raging inferno had to start somewhere. Wherever it was, it was a tiny insignificant spark which gave birth to that inferno.” -Marshal Robert Castillo
Life is short don’t waste today thinking about what you could do tomorrow. Do the things you want to do. Follow your dreams, don’t settle for less. Be present in every moment because time is indeed fleeting.
Enjoy what you have been given and stop complaining about what you don’t have.
Day 31: Meaning of Community
Today is the last day of this challenge! I did this challenge on a whim when I saw Marshal’s sister Elissha Sievers make a post about it. I am so grateful I did. I have felt truly encouraged and inspired this month.
I have enjoyed reading Ellisha and Maranda Castillo post this month as well and getting to know more about Marshal’s sisters who have also been diagnosed with vEDS.
I thank each one of you who have followed along this month and taken the time to learn more about Marshal and vEDS. Community to me is everything. Being surrounded by a good group of people and community is vital.
When dealing with vEDS you need people that are fighting for you, standing with you, lifting you up, encouraging you and loving you. I guess as humans, we all really need that don’t we? I know through the trials Marshal and I faced our tribe of people we're always there physically, emotionally and spiritually.
This year my community of friends and family have stepped up during these seemingly impossible times. No one really knows what to do, or what to say through this grief BUT they are all here loving me through it. Walking along side of me, lifting me in prayer, listening to me, letting me feel how I want to feel, and letting me know its “ok” to not “be ok.”
Grief and the emotions that they bring are fast changing and complicated. I appreciate so much the love and support I have received from so many. From small to big acts of love and kindness, I am humbled and truly grateful for it all.
Through this journey this month I have come into contact with so many new people also suffering with vEDS. I have heard their stories, related to their pain, heard from sisters, brothers, parents and spouses who have all lost someone to soon to vEDS.
I have been uplifted and encouraged by so many messages sent from people from all over the world this month. What a blessing that has been to my heart.
To now be apart of this community and hopefully help in some way! I have been absolutely honored that Annabelles Challenge
a vEDS charity choose to follow and share Marshal’s story this entire month. Then went above and beyond creating a whole dedication page for him on their website.
I am also thankful to The Ehlers Danlos Society for choosing a few of my stories this month to feature and share Marshal’s story. I am thankful and, truly honored by all of this.
Again I just want to thank you all who have followed along with me this month. Who have shared Marshal’s story and continue to encourage me! I appreciate each of you. I plan to continue to tell his story and advocate for him and the vEDS community in any way I can while I am here on this earth.
Payton Castillo
MARSHAL ROBERT CASTILLO
AUGUST 5, 1986 - JANUARY 3, 2020
DONATE
In memory of our loved ones sadly lost to vascular EDS
Wear red & let the whole world know about Vascular EDS.
Get Involved
Quick Links
REDS4VEDS ® and ™, © 2015-2024 Annabelle's Challenge. All rights reserved.
Registered Address: Walshaw Park House, Walshaw Road, Bury, BL8 1PY, UK. Registered Charity No.1157074