Magical Cashier

It's so hard to let go of recovery because I view my prestroke life as so good and worth mourning. I have a belief that I cannot have a good and enjoyable life without recovery. I want to be like our cashier yesterday. My mom tool me to the local grocery store. As we approached a cashier we saw he was sitting so we thought he was closed. He acted like he won a prize by checking our stuff out.

 I don't know what his story was but I could tell that his body wasn't kind to him. He was noticeably happy. With only the small talk that would fit in a checkout he totally made my day and probably his co workers. He is someone that makes me want to grocery shop only to interact with him. He is a magnet to lightheartedness and fun. He obviously radiates joy and when around him you can't help but take on some of that radiation. I wish I knew his name but he unknowingly changed my life. I can't wait to develop some joy radiation.It is great to know that I can help someone without a fully able body. It gives me hope for my future. Formerly I only had hope only in the framework of recovery and mobility. Coming to terms with my lack of mobility progress is a recipe for misery. It's wonderful for my mindset to have purpose to my future without the necessity of mobility. 

Forever wheelchair-bound

I think what I need is some kind of coach or something to encourage me and tell me what to do. I don't want the demeaning language of say, a drill sergeant but instead someone who generally gives me optimism about my  future and overall gives me a mentality of " you can do it".

If it is all left up to me then no recovery progress would happen. I need some sort of accountability. There is so much that I cannot make myself do especially if I don't have the motivation to do it.

Before my second surgery I had physical therapy at least once a week sometimes two or three times a week. That was something I just had to show up for and and my assigned therapist told me what to do and what is best for me to do. I didn't do the work at home partly because I could not really make myself do it and partly because I was already tired from rehab. That was when I had double insurance so that my sessions were covered and did not break the bank. Unfortunately I aged out of that so I don't have the luxury of not doing any work at home but I still can't really make myself do it. Therefore it looks like I am going to stay in my wheelchair forever. The odds are against me getting out of it anyway. I probably could get to walking with a walker or cane I have the physical abilities somewhere inside but I haven't done the work to let them all out.

For a while it was enough to invite me out and give me a ride in a car that would not fit my wheelchair.  That meant I had to use my walker the whole time. That got me practicing using my walker and being on my feet in a more realistic setting. I suppose that people around here are trying to be considerate by not asking me to events or places that are not reallys suited for my wheelchair. Unfortunately that doesn't give me much reason to get out of my wheelchair.

Then there is the question of what they're doing the work is even worth it. Mean shouldn't people like me just the way I am? I shouldn't have to change just because someone else wants me to get out of my wheelchair  but if someone else doesn't want me to then I won't do it for myself. I guess it's a matter of wanting what is best for me not always wanting me to like you. that's a hard balance I know.

Let's Travel After I Recover

I have been on a kick about getting us out of debt and doing heavy budgeting. Sometimes Stephen and I will talk about what we want to save money for or what we need to pay off or whatever. Stephen wants to travel and I do too. I think it's a bigger priority to him than to me but it's not a competition here. Sometimes Stephen would suggest traveling to some destination and my reply was just to wait until after I recover then we can go.

Stephen really likes the beach. We went to the San Diego area for my Grandpa's birthday. The house that we all rented was right on the beach and Stephen would often go walking down the shore while I hung out with my sisters Unfortunately none of my devices work on sand. One time my sisters and I went to meet Stephen at the beach and they tried to push my wheelchair through the sand. It just sunk into it like a brick in water. The nearest lifeguard got us a beach wheelchair which was basically a bunch of buoys latched together. I had no control whatsoever in there but it worked.  I had to be pushed by someone strong and I could not make myself go forward or steer myself or anything. Luckily I had family that wanted to wait on me hand and foot but they are not always going to be there. there are ways around it like boardwalk and special (expensive! ) Sand wheelchairs. It's still not the same.

Of course both he and Nolan want to go back.

It does not matter if I want to travel to a beach destination because I can't do sand anyway. Also if it was a small family vacation then I wouldn't have anyone to push the Lifeguard sand wheelchair. I'd probably just sit on the pathway and watch Nolan play in the waves. That reminds me of when someone pushed my sand wheelchair far enough to be with the family but Stephen and Nolan played in the waves running back and forth while I sat at the shore and watched. After I recover then I can play in the waves with them. Even without traveling I could do snow balls or sledding, but my devices don't do snow either. I strive to my cooter to the sidewalk and I hold the dogs leaves and watch Stephen and Nolan play in the snow. At Easter time, the hunts are all throughout the grass which is possible but limited. Usually Stephen stays with him for that part. I just watch. Luckily last year the mom of Nolan's friend was able to accompany both of them on the hunt so he wouldn't miss out. I often have to get extra creative how I can be included in the activity. Sometimes I take pictures. After I recover then I can be right there with him and I won't have to worry about terrain or battery life or being pushed.

Unfortunately, there is no "after". Stroke recovery is a lifelong pursuit. I hope I'll work my way out of a wheelchair but I'll never be the same as my uninjured self. I need to learn to integrate recovery into my daily life because I'll miss out on a couple more decades of Nolan's life provided I live that long. I have a large feeling of resistance to the life of a stroke survivor. I don't want it. I need to come to terms with the fact that I have a stroke survivors life whether I want it or not. I need to somehow rearrange my self-identity and the view to be like a stroke survivor mother that is Marlene and I...i don't know. I also need to find a balance between having Noonan's friends think it's kind of cool that Nolan's mom has all these devices and not letting a seven-year-old destroy my$4,000 wheelchair. By the way I don't let them destroy anything like that.

There is so much mental recovery that I have yet to do. I probably could have done that kind of recovery earlier if I had gotten over the illusion of life after stroke recovery.

Show Me The Ramps

For the Fourth of July we all went to the city park. There was a parade with lots of dance teams and cheerleaders. Some floats threw candy, which Nolan loved and that made it not completely pointless. I can't get over how incredibly hot it was. 

After the parade we dodged oblivious people stopping randomly and went to the nice air conditioned car to get a better parking spot. All of them were taken except one handicap spot right next to the park. It's felt like I had to travel a miles before I found a ramp, and of course it was full of people standing still. Nolan wanted to go on the bouncy house so we bought tickets. He went in the tunnel and down the slide and jumped around too. 

Good thing I had my scooter because it was all grass where everything was and I would've tired out before finding the ramp. I should have taken pictures. In my kinda defense all the crowds and heat and music way over stimulated me and that expressed itself in completely irrational anger, like moody teenager anger. I'm so sorry Stephen. I said mean things and ruined the day. I freaked out over small things and gave pitiful explanations. It simmered all day. Stephen brought me home after the bouncy house tickets ran out mostly because I demanded to be brought home. Here missed it in something here was really looking forward to  At least Nolan had a good time. Jeremy stayed with Nolan at the inflatable things. He probably didn't want to set me off. 

Later we drove around and settled on watching the fireworks at Weber University. Again I searched miles of curb for a ramp and I never found one. When we found path, I sat on the grass while Stephen lifted my scooter over the curb. In hindsight it makes sense that there was no ramp because there were only hilly fields on the other side of the bushes. Definitely not an accessible area. Before we got to our spot I fell over a couple times but it was on grass so I didn't get hurt. It's all good.we got bug eaten and it got dark so we got in the car and watched the sky light up as we drove Jeremy home. Once we got home I gratefully collapsed into bed.

Bubble Run, my first 5k in a decade

I am so very glad that Teri invited me to the Bubble run. Granted I was her second choice but first was her daughter so I didn't mind.

Before racing day I suggested riding my trike so she didn't have to push my chair. She called the racing officials to make sure that my trike would be allowed which was nice because I didn't have to worry about getting in trouble. The race itself was very fun. She was sure to include humor and helped out when she was needed. I don't know if the humor was intentional but it was appreciated nonetheless. She only had to give me a helping push through deep gravel because I just kept spinning my wheels but most of the race was not on the gravel so that was good. Luckily I was able to leave the car and directly get into my trike. We were able to go right from the cat to the starting line so I did not have to worry about navigating the trike through a building. I did bring my folding walker in case I could not get to my trike directly from the car. But using it for a while would use up all my energy.Turns out I did not need to do that. 

After we crossed the finish line she took me to Denny's to get some food. I used that folding walker in the restaurant so it was put to use along with my handicap sign so we got a nice close parking spot.

Looking back she did some things that were just right for someone like me. When we finished eating she went ahead to go pay while I made my way to the door. Then she held the door open for me and then went to the car while I made my way down the ramp. If she walked really slowly with me I probably would have felt a little rushed and tried to walk faster and it might have been a little taxing for me but she let me take my time and none of that happened. 

It's so easy to assume that I can't do something because of my disability. I can usually find SOME way to attend So if I really want to go then I will. I bet most people would think of me and say,"but she can't run a 5k so I'll pass" and they would be right. I can't run. But I CAN ride my trike so if that's allowed then I'm in.

I take piano lessons from a second floor apartment. I can't leave my wheelchair behind and walk around in that apartment. BUT my folding Walker is light enough to go up the stairs and there's a railing to lean on as I pull my way up.

So it's extra work but it's possible.

It's In the Struggle Itself

My husband gets really into certain TV shows and right now it's Star Trek. I like how he's into a show my dad was into but of course my husband isn't nearly as into it as my dad was. Naturally I'm at least familiar with it and, I admit, I enjoy it. One of my favorite characters is Data, an unfathomably advanced robot who will never feel emotion but is a very valuable member of the crew. He creates another android like himself and works to"raise" it. Data tries to understand human behavior and leads me to think of origins of a custom, etc I especially like what he says in this clip to Lal his daughter. I'm talking about 4:25-4:39.

https://www.youtube.com/watch?v=ecgpXQ1PQs4&feature=youtube_gdata_player

I think what he says applies to me and therefore to most people. I never should have needed à wheelchair. Now it's not necessary for my safety but I'll never be rid of it if I never gain speed and functionality my walker.
SIDE NOTE I already have enough balance to be confident using it alone. I can be dropped off using it and still be perfectly safe. In fact that's what usually happened when shopping but we got sick of depending on store scooters for speed so wheelchair for me. END SIDE NOTE

I'm tired of hiding because I'm not the same person I used to be. I still have a lot of life left and I don't want to pretend that chunk of my life doesn't exist.

I'm tired of working so hard to do what comes naturally to virtually everyone. Every new bleed is a set back but I'm too committed to beating this to let it beat me.
Data has that struggle and he's still awesome maybe I can be too.

Motherhood

It looks like Nolan will be my only biological child
Maybe our only one period. I don't know how I feel about that.
Actually I do.
I Don't like it.

That realization just might be the most heartbreaking one yet.
It means I'm not cut out to be a mom and I might never be. It doesn't matter how a child entered my family but how they're treated and raised thereafter. I certainly don't want to pass on my weak brain veins if it is genetic. Knowing I can't mother well is too much for me.

I can't take it and I don't want to.

With every mini stroke I pawn off all my motherly duties to others. I don't think how I am is fair to Nolan but I need him probably more than he needs me.
I'm not ready for the sheer amount of work and sacrifice involved. not with my limits anyway,

Thi is so hard. I didn't ask for this and would never wish it on anyone no matter how bad a person they might be. it's times like this I wonder why I survived that first bleed. What's the point of being a burden to those I love? What's the point of working my tail off to do what comes automatically to children?

If I'm not a mother who am I?

Bad Day Gone OK

I had a rude awakening this morning. Literally. I woke to Nolan pulling my hair. When I gave up on getting Nolan to sleep I went to change his diaper. In the process I knocked over the TV and it fell on me, breaking. After that I went for the couch to not break anything else. Instead of sitting nicely on the couch I face planted into it. I stayed on the floor and sobbed. It was around 8:30 am. Nolan came over and thought I was hurt so he hugged me and kissed me better.

I had a choice. I could let my morning ruin my day or still enjoy the rest of my day keeping the bad part in the morning. I decided to try and enjoy my day. I had a chance to see how effective the cheering methods are. I did a short Pick Me Up workout to get me out of my funk.

Since I didn't have the TV to entertain Nolan I did an activity with him. I did a Sensory Activvity. First I put cornmeal (instead of flour) in a cookie sheet for him to play with and a measuring cup for him to use when scooping it up.

 Then to help clean the floor I set up water play with Dish soap. It was fun getting mealy and wet with Nolan. It really improved my morning. I think I'll do another workout while he watches Mickey Mouse...again.

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Nolan the Helper

Each person you meet is Jesus in disguise. -Mother Teresa

The title reminds me of this entry.

Since my body is drastically changed I'm on a new quest to accept myself how I am right now while still trying to progress.
blogilates
"If you’re feeling unsure about your looks, your weight, your relationship, what you wanna do in life etc…start focusing on what you ARE sure about. And that’s YOU. You are an expert on you. Hone in on what makes you feel alive, what makes you happy. Do more of that. Your fire will burn brighter and you will be able to blaze through everything in your path."

That makes me wonder what makes me feel alive? The only thing I can think of is being social. That will be so much harder after we move since we'll be so far from my friends. Thinking of starting over absolutely terrifies me. I'll be alone once again. My friends have helped me progress physically and to be a little more ok with the New Me. I'm afraid my progress will halt and it'll be much harder to be social since I'll assume people are judging me.  I know that I shouldn't but it's hard not to. 
When looking for Valentines ideas I found this blog. It has criteria for being counter-cultural. The entry is geared towards parenting but I can apply it to myself. Example is the best teacher after all. 

"[Go against the flow]

[Be different, be yourself]

[Know who you are in Him]

[Don't be ashamed]

[It's okay to be alone]"

I've been doing that for longer than I care to admit. I'd like to think of myself as counter-culteral and maybe that was my environment growing up or it was just me. 

I'll be ok and this move will be good for our little family. Doing this takes a whole lot of trust and it's definitely is not the easy way. I know it's the right thing to do so I'm doing it because I can't afford to not be on His side. 

Shattered Dreams

I was quite discouraged after talking with neuro drs. They said that all recovery is in the first 2 years. That was about 6 mos ago.

My dreams were shattered. With that thought my mind knew that I'd always be in a wheelchair, that I'd never walk again and all my work and practicing for 6 mos was for nothing. I lost hope and faith. It all seemed like a joke to me.

I knew it was not good for me to let such thoughts take over. I forced myself to counteract my negativity with optimism. In my efforts I thought of how much I've progressed in the last 6 mos. I kept the thought that I could be the one to defy the odds (as my husband so graciously told me) and that the doctors didn't know me so they could be wrong about me. I figured that even if I didn't progress I could keep practicing and maybe the workouts would help me lose weight. It'd be great if I progressed but that wasn't the primary goal. It forced me to think of life how I am now and not just after I've recovered. For now I'll at least keep working out, maybe it will keep my mind off of my shattered dreams. I don't know if I will make a full recovery but I don't want the prayers on my behalf to be in vain.