10 Reasons Strokes Suck

Dear Littler B,

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?

Click Here to help support Toby's journey

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.

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