Instead of writing a letter to you today, I opted to make a video to show you some of the things to look forward to when you become me. What an exciting adventure that March of 2016 will become for you.
Our adventure took place in scenic downtown Nashville, TN otherwise known as Music City, USA. Watch the video to learn a bit more about this whirlwind of a trip.
This will be a very short letter, however I felt I would be remiss if I neglected you at this moment. Every day in this hospital seems to go on and on with little bits of fun, little bits of crying, little bits of numbness and little bits of smiles. You are going to adapt to some what of a routine in this craziness of vitals, coffee, nurses, coffee, meals, walks, coffee.
One of the parts of your daily routine is going to be going for a walk twice a day. One time out to the healing garden to sit in quiet and one to the chapel for the same. Along the way to each there is a table set up with a bowl on it containing quotes to help you get through the day. I have been collecting these quotes to share with you because other peoples words are so much wiser than mine. This being Easter Sunday, I felt it the perfect timing. Enjoy and take courage.
I hope that anyone enjoying these quotes picks their favorite one and tweets it. Spread the love, spread the word, make someone laugh, make someone smile.
May you know the peace of Christmas every day of your life May good luck be your friend in whatever you do, and may trouble be always a stranger to you
May you have love that never ends, lots of money and lots of friends. Health be yours, what ever you do and may God send many blessings to you. May your pockets be heavy and your heart be light. May good luck pursue you each morning and night. The way we treat people who disagree with us is a good test of what we really believe May your blessings outnumber the shamrocks that grow, and may trouble avoid you wherever you go.
May those who love us love us; and those who don't love us may God turn their hearts, and if he doesn't turn their hearts, may he turn their ankles so we will know them by their limp. (TOO LONG TO TWEET ;-)
Bless your little Irish heart, and every other Irish part.
May you always walk in sunshine. May you never want for more. May Irish angels rest their wings right beside your door.
Thank you all for your continued support and shares... With your assistance we can get him through this!
I have snuck out of the hospital room after my patients finally wore thin enough to make me want to be bristly. Promise me in the years ahead of you from your time to when you become me that you will do everything and take every class you can to learn to have patients. (The birth of your oldest will bring you a long way, haha) In his progress and healing, walking way from situations are the right course of action.
Here are the facts of where we are to today, since I think the last letter may have come off as a pity party moment. We have been fully immersed in a completely stacked daily schedule of therapy. Multiple sessions in turn of physical therapy, speech therapy and occupational therapy.
The Physical Therapy is helping him to learn to stand again without falling over, learn how to walk again, learn how to coordinate his thought with motion. His left side is very weak unfortunately. That has been a struggle for him as he is a lefty. He has done exercises from learning to walk with a walker, throwing bean bags into a basketball net, using parallel bars to using a Wii to try to work on all of the issues misfiring in his "broken" head.
Wii was his favorite without doubt. You will learn what that is in many years but the best explanation is take your Atari, add full color picture (no more pixels) and motion control via a unit that looks like an exercise step (a "balance board" as a replacement for the joystick) and integrate that with the game via standing on the board. It has games like bowling, soccer, archery etc where the motions of your body will actually play the game through pressure points activated on the board. The guys of this time are all macho (no different than in your time) but they like the intense graphics of other game systems. The Wii will be your favorite because you actually feel like you are doing something with your whole body involved.
Speech Therapy has been focused around a couple of things as the stroke gave him trouble forming words. The location the stroke occurred usually takes away the ability to speak, however he has been lucky. He is only slurred as you have seen from previous posts. She is also working with him on cognitive reasoning. That one has been a struggle. Your husband, though usually quiet is a very intelligent man who can figure any puzzle, riddle or test. At the point of this letter, he is not that and it gets him frustrated. He is getting so much better though and will continue to improve with support, love and patience.
Another thing that his therapist is working on is appropriateness of speaking because unfortunately he seems to have lost the filter that is supposed to be in place between his brain and mouth to tell you "hey, maybe that wouldn't be a nice thing to say". He has been a little bit verbal with me and only a couple of the nurses at times in a way that the real Toby wouldn't.
He doesn't mean to be, but when he starts getting tired and confused he gets edgy. You will have to pay attention when you get to be me to notice those signs and walk away at those times so that he knows when he is being inappropriate or rude. ie. instead of being the old Toby saying "hey, could you get me a soda" or something like that he will say "It must be nice that you can walk down and get a soda, some people can't". That is his way of saying he wants one. It's not all like that but nights are rough. Sometimes I think he does it to be funny though like teaching our favorite little munchkin to say "chicken poop" where ever he goes - then he blames it on his broken brain.
"Sometimes You Just Have To Say Chicken Poop"
I have to admit you will have a soft spot in your heart for his speech therapist. The whole therapy team is going to be absolutely amazing, as well as the nurses - however she is sassy and spunky in the particular flavor that resonates with you.
The last piece of therapy is Occupational Therapy. This is where they will work on things like teaching him to shower and shave and all of the personal things he has to relearn. This has been the easiest of the challenges here in the hospital (maybe not the shaving) because they have all the tools like a seat in the shower and wand for water. They are also the ones helping him deal with his eyes and the double vision as he no longer has control over his one eye. (as you saw from the video in my last letter).
There have been other forms of therapy as well that come via the non-medical folk. There is a wonderful woman named Kathy who brings her dog to visit those here in the hospital. He is absolutely missing our baby, so this lights him up to no end.
A couple of angels in the form of blogging colleagues put together a GoFundMe site to try to keep our house which has been a constant worry for him as he is not able to work, nor will he be for a long time if ever. I love those girls so much! Heidi of WomanPulse & Miranda of JKLMNAdventures.
Aunt Sis made a quilt to bring down when Mom and Dad came to visit, and your oldest sister made a card and actually mailed it to the hospital.
Mom and Dad also came down from NY and that meant so much to him. His family is local but they are very different than our family. They are not close and as of yet have not visited. Try to keep him away from the subject if you can, it will be a hot button that messes with his b.p. Moving on in a Thumper moment...
Mom & Dad got Toby a hat to match Dads. He LOVED it so much! When he is very happy, his mind almost turns a switches on and he becomes almost childish giddy/happy. (like the video I shared with you in the Random Acts of Kindness letter)
I have to say dear young me, there are more good moments than there are bad. You can handle that even on a bad day, and you know it. You are strong and always find the sunny even in the darkest times. Most of your life you will wonder what that gift is that you have....
You know, some people have the gift of voice, sports etc. You will always look for that one thing that you are good at, I think I have finally found it. You can find the good in any situation. Not that that will make as much money for you as Michael Jordan earns but it will make you a more pleasant person to be around most of the time, and you will become friends with some of the most amazing people because of it. I don't regret a single moment, so neither will you.
What kept my ears and vocal chords busy during this letter
It has been days since my last letter but in a flimsy attempt to merge current life with the real world outside of this hospital. After so many weeks I thought I would address a missing challenge that was put to me in the guise of trying to deal with current events. I was asked to write a top 10 list so, here it is in my experience. The top 10 reasons strokes suck when it happens to the man you love.
There may be more, and better ones dear littler me but these are some of the ones that I have compiled over the last 3 weeks since they began. Unfortunately my dear younger self, there is truly no one of these that are of more or less impact so the order of the list is irrelevant.
1. I don't know who he is
I
think I put this one up here because it is one of the more scary
aspects of this all. You will deal with Grumpy Gus when he is sick over
the years, but never argumentative. Never has he been harsh to you. When
I say you found Prince Charming when you found Toby, it is the truth.
You
are smart enough to know that he is scared, angry, frustrated and
confused in turns. He doesn't mean to take any of it out on you but what he
does know that you love him enough to be the one to absorb it and get
over it in ways you need to in an appropriate fashion than he can at
this time. The thing that sucks the most about this is that with a
stroke, it is unknown if the personality change is permanent due to the
location of the stroke.
One day at a time baby girl. Screw that, one hour at a time.
Every
once in awhile he is himself. The other day the OT was working on
increasing his ocular muscles to help him while she was doing visual
acuity exercises to help reduce double vision and he decided he wanted
to me video it to show everyone his eyes are better than Steve Buscemi as
Crazy Eyes in Mr. Deeds.
2. The body betrays
When you get to be me dear one, your spine will have been operated on several times and needs to be several more.
You are not leaving him. That is that. Every day you will spend in the hospital next to his side. He would do the same for you. People just don't understand how it is with us. We don't part. Since the day we met we don't leave each other for any extended period of time. Now onto the explanation here of the body betrayal.
There will be times when you will sleep not at all, there will be times when you will sleep sitting up, there will be times when you will be sleeping on a cot that is an inch thick. It will hurt at times so bad that you can't breathe. Never let them see you sweat it through this if you can. There is nothing you can do about it and that is just one of those things that will keep you awake through this.
"This too shall pass - though I know not when"
3. Hurry up and slow down
Just when you think you are making progress, you're thrown back. There are a lot of things to handle now that there is only going to be one of you. You have to take it all on not let him think about it. At the same time you need to force him to slow down because he is trying to hurry through everything just to get out of the hospital and back in the driver seat of life. He is very far from that and he will refuse to realize how far. You have to be strong when he gets angry for being there as the soundboard when he gets yelled at to put the breaks on by you, nurses, doctors and therapists of all flavors.
4. Spinning Plates
This is the one that I'm struggling with especially during the writing of this letter. Today has been a bad day for keeping the plates spinning. I know you know that reference where you are in the late 80s being able to still watch Johnny Carson (oops, spoiler again).
After making it home for the first time in several weeks (unfortunately they have a very strict 3 day pay or quit policy at Chariot Pointe Apts) there was a note on the door about the beginning of eviction. That is to be expected with as long as you will be in the hospital for this.
Hold on to your sanity dear younger me, that in combination with the electricity not working will shake what little backbone you cling to. If we are able to come up with the money we can save our home. Toby losing his job over this and his being our only income at this time (Spoiler - you are going to be downsized again) - the plates have started dropping. Not sure today how to get them going again - that will have to be a post for another time.
Some amazing colleagues of mine put together a GOFUNDME site, but what stranger wants to give even a dollar to someone they don't know in this day and age?
5. Uncontrolled emotions You are the strong one dear littler me. You are the one who handles all of the affairs at home and keeps things running. You are the motivator. Usually, you are the income as well. You keep your cool in public. You are the go to guy for so very many people.
Until now
Heads up, you will cry a lot for no reason at all in the most bizarre places. Just roll with it. I'll let you know if there is a solution if anyone ever lets me know.
6. To help or not to help, that is the question
See the last item first paragraph. (only kidding) There is a lot that you are trying to deal with to try to make the outside world stay functioning when the world inside the hospital is not functioning. Toby wants to do everything on his own except if you are not paying attention to him. By nature you are the help everyone type and this is one situation where you can not go on overload. Even though you want to and will. There will be times when he doesn't need help but wants it and times he truly needs help and you won't realize it. He needs to do things himself unless he can't. Do these statements confuse you? Good, they do me as well. There are times he needs help and won't ask for it. Instead he will point or say things like "it would be nice if someone would handle this since I can't. You have tried the "you know how to do this" and the "you have to try". Tough love? Doesn't work. Sweet love? Doesn't work. Yet they all work when used in the right point in time. Unfortunately to date I have not figured out when those points in time are and just when I do they change. Hoping this will ease. I sound like a broken record but I will have to let you know on that one as well.
7. Fear of the unknown
With everything happening, we have a new normal every day. The mystical "They" have said when we reach somewhere around the 6 month point, what is going to get better will have. Hearing gone because of the severe tinnitus, lip drop, ocular mischief, double vision, strength, balance, ATTITUDE. In the potpourri of misfires going on in his brain/body connection, what are we going to end up with and am I strong enough to help him through it? I pray every day, it's a good thing you paid attention to that where you are in the time stream.
Without our home, where will we go? How will I support a man who very well may no longer be able to take care of himself? I was denied unemployment hilariously enough because I was a no-call no-show when they say they offered me an assignment. Voicemail that my husband is in critical care (which you don't know about yet, its the digital version of answering machines) is not enough . Food stamps? Denied. His job? Lost.
8. TMI baby but never TMI
The staff at the hospital has been absolutely amazing. I can not say that enough. The nursing staff, the doctors, the valets (who even walked a guitar up to the 6th floor to his room because not having hands enough). They all have sources to call and information to read and websites to research that information overload has been reached. Unfortunately none of them are able to lead to anyplace that doesn't lead to / say need to try something else.
One brain (ours not his) is just not big enough to comprehend this whole thing. The case worker here even assigned to assist said "I'm sorry I have no suggestions for you". I have always considered myself an educated and level headed person. You will work very hard to get to that, however right now I'm clueless. What do I do now?
"Life didn't prepare me for this."
9. Loneliness
Toby and I have always said that there is nothing that he and I can't get through together. The problem is physically a man who resembles Toby is here but dear Slim Shady can you change the lyrics to your song? I'm waiting for the real Toby Martin to please stand up. I'm not sure I can be me and him until he is him again. I'm going to do my best dear little one because he is worth that.
10. When is the next one?
The first one I watched was 3 days after our honeymoon but never was it to this extent. 3 strokes into this, all I can think is when is the next one and will it be the one to take him for good from us?
Don't fear littler me, some how we will see the other side of this one way or another.
Exhausted-ly yours,
Challenge with my girls. Thanks http://www.womanpulse.com for keeping me moving forward.
Just had to share this video because this is how I am feeling without my husband. He is here physically but not mentally after his stroke. Don't fear dear younger me. We will get him back and we can talk then all about it. I miss him so dearly, but day by day we will find him. We have always said that we will never
I can't wait till the day you become the me of years ago and encounter him for the first time. You will, like I did, fall in love instantly.
Treasure every moment you have with him and know that even though he is not here now, he is worth every second and he will be back.
I am writing to you today across the many years from the 3rd hospital cafeteria in less than two weeks. It has been a long haul already and we have so much longer to go. I hope you have not been feeling neglected, but it will be some time longer to get through this and back to our normal correspondence.
I will tell you that you are stubborn and strong and will get through this. I'm not sure when or how but you will. You are going to hurt very badly physically and emotionally but you can and will do this. You are going to have times you will feel sorry for yourself (like yesterday which was our wedding anniversary) and then you are going to hate yourself for even thinking those feelings.
People are telling you that all this is normal but quite honestly none of this shit is normal. Just a heads up. They will all also be obsessed with you eating for some reason. Everyone who is anyone is also telling me now, more than ever I need to sit and write. ESPECIALLY Toby himself. (He's actually being a big pest about it, so here I am for the first time since this all went down)
Our wedding song which I listened to several times yesterday which was a change up from @BillyBoydActor who I have had on loop for a week and a half solid.
Right now I am going to seaway into the actual story that has happened up to here. The woman in me that is fighting to keep her physical pain and anxiety issues at bay would tell you to look away from the page until I tell you it's ok to look again so that you don't freak about the things you are going to go through when you become me. I would tell you nothing that would have you not find this man when the time comes and spend every waking and sleeping that second you can with him.
I will let that choice be yours and as you are me, I know you will read every bit.
*****INSERT SPOILERS HERE*******
A week ago Saturday we ended up in the local emergency room at St. Thomas Rutherford as he had a migraine headache. The headaches are not new so we thought it was just get something for it, sleep it off and wake in the morning and he would be fine.
Unfortunately, a 14cm aneurysm was located in his basal artery in his brain. It was bad enough that the doctor on call did not feel comfortable keeping him there at the hospital, he wanted him transferred to St. Thomas West. He was transported to Nashville at about 2 AM and he made me go home for the night. At that point, things seemed as if he was fine and we were going to just go up there for a 24 hour monitor. When I arrived in the AM at the new hospital with his clothes and personal paraphernalia I went to the doctor to understand what was going on and the game plan was.
The doctor intended to do a spinal tap to determine if the aneurysm was leaking. When he was brought back from having the lumbar puncture he fell asleep for about 2 hours. When he woke he was in massive pain, his neck swollen and dizzy and nauseous. All of it him at once and he had an anxiety attack and started ripping the heart monitor leads off of him and started screaming that he had to get out of the bed. The on duty nurse let him do that and we got him a bucket to be sick in.
Within a matter of minutes it was apparent what was happening. He was having a third stroke. He was put back in bed and they started testing him. By the end of the night he had lost control of the muscles to keep his eyes straight. His mouth has dropped on one side. His left side is very numb (face, head, arm, leg) His speech is slurred and he is not able to walk on his own.
The next day they did an angiogram and determined that his aneurysm is essentially straddling the vein on both sides and the doctor does not feel it can be operated on safely. He has had uncontrollable hypertension (High Blood Pressure) to add to the mix so avoiding yet another stroke is very difficult.
All of this has happened when rent and electricity were due so the power has been shut off at home and we very possibly have lost everything yet again when we had just started bouncing back after our tragedy last year. Chariot Pointe Apts (where we moved to be close to the V.A. in Murfreesboro, TN) has a very strict 3 day pay or quit policy.
Needless to say, I think for the most part I have been holding it together..... In front of him and other people. My broken record in my head has been:
"Give me the strength to get through this, if not give me strength not to show it in front of him."
He has been insisting on videoing everything that we can and we have obtained permission from the administrator from the program. He has been a multi-year winner in the 48hr project and loves to make videos. He has even worked on the set of The Green Mile and Jackass II (movies you won't know for years), so this journey he decided to get in front of the camera as much as possible. For him I will do what ever is important to him and his wishes. We have put together multiple videos so far but only 3 have been published.
One of his first attempt to walk with the nurses
One of them his message of love and thanks for my blogging friends who set up the GOFUNDME site in hopes of helping us not lose our home and everything in it so that I can stay by his side.
And the last one, a random act of kindness of a man who sat with him in the lobby of the hospital when they allowed me to bring him for some air.
******END SPOILERS********
So in closing dear younger me, even with all the trials and tribulations that I am going through, I would not change one thing so I am hoping you don't either. He may not be the same man he was but in time that may come and if it doesn't there is not a bit of him that I would miss so don't you.
Love,
An exhausted you sending energy to you for the me that you are going to become... You're going to need it.
Please don't be upset but I need to take some time away from the regular letters to address a situation happening here and now. I promise I will get back to my regular format soon.
Today I want to share huge thanks to a Mr. Mike Bell. I don't know where he is or anything about him other than the act of kindness he performed for my husband today while we are in the hospital. Please see below for the video.
"Together, there is nothing we can't get through."
