“Please read this”
A Story that everyone needs to read!! Love, perseverance and life is what this true life story is about.
As I am a husband of an MSer (Multiple Sclerosis) I understand what the healthy person in a relationship goes through….Watching their loved ones struggle with the fact that they have an illness and either have a long road to recovery or have just been diagnosed. I met a family online that have been through a journey that most wouldn’t be able to handle or even fathom about living with!!
I know a little bit about their lives and have been chatting briefly with “Joseph Papas” who has been beside his girl for the long run “Crystal Brown” and her trials and tribulations with the no holds barred illness called Guillain Barre Syndrome!!
I came across their story and video and I had some similarities and understanding to it and decided to reach out to him and talk a bit and I wanted to interview him as I know his story would help others who are faced with this disease and how others watching their partners going through the repetitive pain and day to day changes and rehabilitation will be able to know that they aren’t alone in all this and it’s always beneficial to reach out for help and a shoulder to lean on!! Come join us in our interview and learn about true sacrifice and true love.
Hey there Joseph, tell me about the first moment when you had figured something was absolutely wrong?
After being to the hospital emergency ward and then being sent home because they had told Crystal that it was all in her head!! “This being said from a nurse in the triage” It was no more then 5 hours from being at home that Crystal had lost her ability to walk and use her hands or move her arms. She had become completely dependant on me to move her limbs or carry her to the toilet, wipe and redress her! I knew this was no ordinary flu and had to carry her to the car and back to the hospital as she suffered excruciating pain in her neck and all joints of her body!
How was your reaction and how did you handle it?
I knew that more than anything, I had to stay calm and continuously assure her that “I’m right here” and that everything is going to be ok! I would not let her out of my sight for a moment!
My reaction was all about safety to her at all costs! I had never experienced mental and physical stress like this as she cried in pain, even snapping at me because the pain was so unbearable. I had no instant answer or cure for her, all I could do was reposition her head, arms, legs, body etc as she demanded it almost every few minutes. This went on for 12 hours straight!!
When you were in the hospital looking at Crystal, what was your first biggest thought?
After waiting for her to be put in a coma and returning to the room to see her hooked up to the machines! My first thought was “please don’t die, please don’t give up” how could this weekend turn out like this!! We were meant to spend this weekend with each other and how could it come to this ending! You did nothing to deserve this! Let me take your place!!!!
The first week were you in denial of what was going on?
Yes I truly couldn’t believe it! It felt like my mind was not really with the situation of what was going on.
Like in a bad dream! This could not be happening. I would sleep in her bed and be dreaming of the life I wanted us to live and to only wake and realise where she really was and felt an immense and over powering emotional headache to the point my eyes were shakey and couldn’t focus on what was infront of me as I layed in her bed and the smell of her side of the bed was too much to handle!!
How many different diagnosis did the doctors give you for Crystals condition?
Only one doctor came to our aid once she lost her ability to breathe. I had to perform mouth to mouth before nurses spotted what I was doing and asked for what purpose was I doing it!
I told them I’m trying to keep her alive because she can’t breath for herself! An MAU doctor was sent down to question me on the story, I told him. He knew what it was straight away and urged his team to get her into ICU immediately!
He gave a 5 minute crash course on what GBS was! From there he left and I started to google the condition.
Guillain-Barré syndrome (GBS) is a disorder in which the body's immune system attacks part of the peripheral nervous…www.ninds.nih.gov
How long did it take to get the final diagnosis?
From the last time we sat in the emergency room till the doctor asking me about how it came together. 12 hours.
What friends and family were the true ones by your side indefinitely through the rehabilitation and the brutal truths of what could happen or not?
Her immediate family came for her and 2 of my friends that I trained at the gym which had been by my side the entire time throughout this ordeal.
Did you have a friend you constantly vented to throughout the ordeal as talking to Crystal you knew would be too much?
I never vented to anyone as I didn’t want to put the pressures of my struggles on them. I wrote text messages to crystal and would send them to her phone when ever I became weak.
As I know from experience as far as the sick ones feelings of saying things like such as…..I can understand if you want to leave me!! Or please kill me now!! Or I don’t want you to see me like this!! Or I’m so embarrassed of myself!! How did you handle this listening to your girl say these things?
She did and would say “she wanted to die” “This is too hard” it really hurt because she couldn’t talk. She could move her lips slightly and I was the only one who could read her lips and read her needs and wants but I knew that in the time of struggle and loss of self worth “I HAD” to positively speak and assure her that I love her very much and that the kids are beautiful and waiting for mum to get better! That I’m here and nothing else mattered to me but to fight along side her and that we are a team and can do it together!
What were the funniest moments as far as Crystal being bed ridden and the 2 of you laid up in the hospital room or chilling in the bed beside each other?
In later months when she finally would use her phone, she would film me snoring and send it to me when I woke up with “I didn’t get any sleep because of you”.
Another time was when I took her out of the hospital to dinner and we didn’t get back till super late and accidentally missed her meds and the nurses would be on our case once we returned lol.
What was the worst point you seen Crystal?
My worst point was in the early weeks when she came out of the coma, she had a tube down her throat and I hadn’t learned yet how to communicate with her as she couldn’t move or nod her head! She couldn’t look any higher then her nose so I had to almost lay on her chest for her to see me! One moment she was in complete discomfort or pain and I could see her trying her best to move her body then look at me to try to communicate what was wrong with herself.
I’d be asking her 100 questions about her comfort hoping one of them was correct but I could see tears rolling down her eyes and she’d look away as if to say “you can’t help me, I’m truly alone” I felt like I had completely failed her and myself, I continued to ask as she just cried with no sound or emotion because her facial muscles would not work, just tears!
What was your biggest breakdown personally with all that was going on?
My biggest break down was the next day when I went back to the hospital after awaking and came to the realisation that seeing her hooked up to the machines and all the craziness and nothing but beeping and machine noises!
I balled my eyes out and took 2 weeks off work and stayed with her all day and everyday for 2 weeks straight.
What was your moments at night like at your home when you were alone?
Returning home because the nurses wouldn’t allow me to stay in ICU was the most loneliest and had the most emptied feelings! My mind was completely fixated on crystal at the hospital!! Sleep was non existent to the point where the only time I would sleep was because of complete and pure exhaustion.
What did you do to keep the thoughts from racing through your mind?
I would go to the gym and train as that’s where I could clear my mind but still it would never really do the trick but it helped a great deal rather than sitting at home in an empty house
Any plans for you and Crystal as far as travelling or completing projects in your area?
We really want to get her recovered to the point where she can do most things independently and take a Holiday trip to Hawaii!
What were the two of yours favourite movies through those long 10months?
We had a lot of time to watch movies and we both really loved “The Help” “Seven Pounds” and “The Blind Side”
Any wise words for couples who face these types of struggles?
As for advice!
These are the times you will be faced with valuing the love, memories and knowing your loved one is going to feel alone and need you there for them! Very much like a child needs to be loved, fed, dressed reminded that they are special, touched and protected! If you are a man, then be a man protect and care for your loved one!
Nothing is more powerful then the ill and weak seeing and feeling your strength for them to aid and give them hope for their recovery.
This interview has touched my heart as if I wrote it myself. There are millions of couples who go through the struggles like Crystal and Joseph have gone through. It puts things into perspective of what really matters in life and how it’s easier to run away then sit and stay and be by your sick loved ones. It is a struggle to not be able to help or have the physical feelings that they endured. The opposite partner will always feel helpless as they have a hard time talking to people about all this. But in the end you will figure it all out and life will be more cherished 100 percent. I appreciate Joseph and his family reaching out to me. And hope you all will support and pitch in for all illnesses including the major ones as GBS and MS.