I wanted to write to you here as a heads up. With everything going on with your husband, you have lost a bit of yourself. Over a month ago I accepted a challenge that the pre-stroke us could have handled without a blink, the post-stroke me has decided that it is something I MUST do for my own sanity. I will still keep you up to date here and there with how Toby is doing, however I do know I have messed with the space-time continuum already so much by telling you what I have up to now.
To make good on commitments we have made and to get myself back in the game with my letters to you in a huge way. I have accepted not just 1 challenge, but 2.
Crazy 4 Blogging Facebook Group. COME CHECK US OUT!!!!
My friends (and I most definitely consider them that at this point) who I have met and formed a "Girl Tribe" starting with one of the most wonderful virtual friends I have made thus far Heidi @ WomanPulse, as well as another Miranda @ JKLMNAdventure. These girls will be a big support through all of this when you get through the decades and become me.
After brainstorming in our little group we opted to make a larger, more public writing group (blogging specifically, though you won't hear that term for a couple decades) that focuses on encouragement, help and promotion of each other's writing. (When they develop Facebook, come check it out!!
I have also accepted an A-Z challenge through Blogging from A to Z where my posts each day start with the corresponding letter of the alphabet. Today is April 3 so I am 3 letters behind, but in the next 24 hours I will rectify that situation and go into maintaining mode.
This is going to push us to the limit of our creative ability thus far in letter writing. Luckily, challenge 1 is only once a week, so for that day I will be
combining the challenge from Crazy4Blogging with my A-Z challenge for the month of April in letters to you so that I do not divert from my true intent. This should be relatively easy as my intention was to teach you dear younger me about things to come. I will be doing that in teaching you about things that you will go on to teach,
Herbs - Practical and Metaphysical Uses
Don't get worried dear littler me, I will continue to keep you up to date on the other situations that are happening now. I will make sure to do a couple posts a day when I can so that when you do become me, you will be well prepared in as many areas as I can prepare you for.
As always, the wisest words I can leave you to live by...
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.
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.
