Posts Tagged wheelchair
I have to admit I have an attitude most of the time. I’ve been known to walk around with a chip on my shoulder just daring anyone to knock it off. When I brought my son home and he finally got to the point that I could take him out it was an understatement to say I felt very self conscious. I have never been one who likes to draw attention to myself and this grown man in a bulky chair does just that. And of course – I can be very clumsy at times so I do things accidentally to make it harder to be inconspicuous.
In stores I often run into stuff and if I’m buying more than a couple of items his lap isn’t big enough and things get dropped! It’s actually quite the show. lol It’s okay – I’m used to it – I run into stuff at home too. I’ve finally learned the best way to navigate the stores is to push Chris in front of me while pulling a cart behind me. It’s not quite as awkward feeling as it was at first. We’ve done it long enough now that I feel funny when I go to the store without him and his chair.
I described these to say that I swallow a lot just to get out – but it’s getting easier all the time. I’m getting more comfortable with it and I don’t dread getting out like I did for a while. However, I notice that others are not always as comfortable with it as I am. I did have a worker at one store offer to push the cart or Chris for me the first time I went. But I declined as that was awkward and I would feel like I had to hurry. People stare — grown people at that — sometimes we get a nod of compassion. I always wonder what people are thinking when they look at us. Do they have a loved one that is in a similar situation? Do they think we should stay at home? Who knows – just like they have no idea what I am thinking about their blank stares or compassionate nods.
I have to say that I developed an attitude when we would go out. Some of it is bad, some of it is good. Sometimes I play through this scenario in my mind that someone says something rude and I punch them! lol – I go to town mad and ready for someone to just say something! In most instances no one says a word (lucky for them!). But we do catch some attitudes that I always choose to ignore.
Earlier this week I pushed Chris down to the grocery store on the corner. It’s a nice walk we just have to go early and not buy much. We get some fresh air and sunshine and grab a few items we are in need of. It’s actually a good little outing for us both. Here’s a pic of when we went the other day – I obviously bought too much!
I never know if I’m going to feel like I’m in people’s way or not – and I hate that feeling. But I think I’m sort of over the attitude part. I’ve gotten to the place that it really doesn’t matter. I know I’m not going to do anything on purpose to be in someone’s way. In most cases people navigate around us easily enough; but sometimes they cut in front of us quickly like they want to hurry – and yes – I am tempted to run them over – and on a bad day – I just might!
On the way to the store, we met a lady with a dog. I feel like we hog the sidewalk so I usually try to make a joke about Chris needing to lose weight. She stopped and talked and let her cute little doggie lick Chris’ nose! It was a pleasant conversation. Then the clerk at DG talked to me about her son who works with “people like” Chris. It was a friendly gesture and very nice of her to share. When we got to the Buy4Less the clerk actually spoke to Chris (guess we’ve been in there a lot!) she said, “good morning there!” It means so much when people go out of their way to speak to him as he is mostly ignored which I understand…..On the way back to the house I wondered if it was my attitude that made it a perkier trip. Who knows?
For so long I have felt so all alone on this journey even though I know I never am alone. It takes a lot of people to help me out here and there. People sit with Chris, help me take him somewhere or help out in some other way. For instance, there’s a church that sends us food, gifts and gift cards periodically. It’s helps so much and is such a blessing. Then there’s my friend PD who is always trying to get us out of the house. She isn’t bothered at all but she works in long term care. Which is actually a reason she could avoid us – too much like work! And the friend who called this morning to say he’s coming by one day next week to put something in my van to hopefully fix the air problem.
What’s my point? I’m choosing to see the positives instead of the negatives. While there will always be jerks out there – I am not going to let them steal my focus. I’m taking my thoughts captive (2 Corinthians 10:5) and choosing to think of the positives – those who go out of there way to help us, speak to us and develop a relationship with us, rather than those who just put up with us or feel we get in their way.Their loss.
There is a lot going on which means that my mind is working overtime to keep up. Hence, the post midnight blogging. I won’t even try to tell you all that is going on but right now things are in an upswing. Chris is doing well and making slow but steady process once again. It’s almost like he picked up where he left off last year when he started getting sick. It seems to be going much better. When he does better – my whole mindset is better. Trust me – it’s just good when it’s all on the upswing together.
I really do feel like I’m on a roller coaster much of the time; or maybe the correct analogy would be walking a tightrope where I have to keep perfectly balanced or fall to my death. Yeah, that’s what it feels like. The trouble is that I have some very good problems. Chris is doing better, up more hours of the day and needing a lot more one-on-one therapy and attention from me. He is eating good again so that consumes some time – not a complaint – just a fact. Think about all the things you do just to take care of yourself each day – eat, shower, brush your teeth, eat, go for a walk, eat again… everything I have to do for me also has to be done for him – it’s almost like it cuts my time in half to start with. Then add to that my work load which has grown which is another great problem, it’s just difficult to keep up with. And I’m about to finish up my Master’s in Health Education. 12 weeks and I’m done. Then I need to exercise and train for my races – unfortunately when I’m in a time crunch the thing I need the most – gets cut most often. So like I said, it’s a balancing act to keep it all together without losing it sometimes. (smile)
Anyway – that kind of catches you up to where we are and I hope to be a little more regular with the blogging because it helps me process my emotions and thoughts – and boy do I have a lot to process! But tonight I had something really crazy happen at the race. It was the Limbs for Life 5K and the proceeds help provide vets with prosthetic limbs. Usually there are runners with prosthetic devices and I really do not feel worthy to run with or for any of these honored individuals. There is a wheelchair division at this particular race too.
They kept telling us to stay to the right since it is an out-and-back and the wheelchairs and other runners will be returning and they will need the other side of the track. Somehow a kid got tangled up with a racing wheelchair at about one km in. The wheelchair went flying and the guy in it fell completely out. It’s a good thing he was wearing a helmet. I stood there for a minute to assess the situation. What I witnessed in the next 2 minutes was simply amazing. One lady began directing traffic and making the runners move back to the right so that they could continue moving. The mother of the child and two other people ran to the overturned wheelchair and started checking on the young man. They turned the wheelchair back upright at which time I stepped over to help steady it for them as two people picked the man up and put him back in his chair. He kept saying he was fine and he took off again. I took back off leaving the poor little boy crying in his mother’s arms. I took away a lot from this experience. One was that before Chris’ injury I’d have likely kept running with the other runners because I’d have been terrified to even think about helping. It actually was very natural for me to step over and offer assistance, although I really didn’t do anything much.
The second thing was I got mad. I was so angry that the young man in the chair could have been seriously injured because someone didn’t follow the directions. Now I do not know if the child’s mother didn’t try to keep him to the right or what happened as I did not see that part – but I got fighting mad as I thought about how negligence could have really hurt someone and almost 6 years ago my son was injured through a negligent (not purposeful) act. BUT — before we turn our noses up and pass judgment on this kid and his mother – let’s examine ourselves. How often do we go over the speed limit because we know that they won’t stop us up to 5 over – right? It’s no different. The rules and laws in most instances are made to provide protection and our carelessness or need to “get on with our agenda” can cost someone else dearly. Later I did muster up some compassion for the little guy as I know he was really frightened by the ordeal.
For my part – I surprised myself. It was so natural to step in – the race did not matter. I had no thoughts about the race until I was sure the young man was up and rolling again. I estimated we were there with him for about 2 minutes. That’s about what my final time reflected – and I still came in third in my age group and came home with a medal! I’ll try to not be so judgmental about the other guy – and concentrate more on my own character. Forgiveness many times, is an everyday thing for me. Gotta keep working on it….
Yesterday I commented on how difficult it was to get Chris out and to the fair. Although he is handling the increased activity pretty good, it sure wears me out. This is partly due to the bum knee – that’s getting better. I plan on starting to go for walks in the next couple of days to get it back into the routine. Then maybe running in another couple of weeks. Anyway, whatever the case – it exhausts me to get him out even with help! lol! But it’s good for him and I am sure getting out is good for me too.
We really had a great time at the fair and Chris got to experience lots of different stimuli: smells, music, people, exhibits etc. When we got there we had to find parking and were under the assumption that handicapped parking was free. I had seen it two or three different places and so it was not unfounded! Anyway, I stopped to ask the lady and she told me it was 5 dollars to park no matter what and ushered me on around. So the next guy I stopped to see if I could ask about the parking and he simply pointed to the field and said, “parkin’s out there…” I said I have my son and a wheelchair. Then he shrugged it off and told me “good like finding a handicap spot.” Both of them were very impatient and acted like they just wanted us out of their hair.
We decided to park by the gate and unload the chair and then Chris. Then Pamm would stay there with him while I (the one with the busted knee cap) went to find a parking spot God knows where! So we just stopped right there and unloaded it all! Then there was a very nice man who was leaving and was parked real close to there – he offered us his spot and said he would wait until we got unloaded until he pulled out so we could have it!!! (Can you say “angel”?!)
The ladies at the gate were very friendly and understanding. They also gave us a paper with information about the fair activities and a map. On the map is said beside all the parking areas “free handicap parking.” So we worked our way through a couple of buildings to go over to the admin and see if we could get the 5 dollars back. First of all, I could not get Chris’ chair to the building as the ramp at the end of the sidewalk was blocked by their four-wheelers! I was pretty hot then!!
The buildings were all pretty easy to access as there are ramps, and buttons on some of the doors that hold them open so you can get the chair in. My friend was with me but if she hadn’t been it would have been very difficult because as a general rule, people just ignore you if you’re not like them. I caught a few looks that I interpreted to mean “why would you even come here like that?” But at the same time there were some very helpful people too.
I worried about Chris getting dehydrated and so I gave him some of my coke. He drank it right up too! lol! That was really cool. We were pretty tired after only a couple of hours so headed back to the car. Then we had to figure out where to re-load Chris and the chair as there are no specified loading zones!
Overall it was a pleasant experience – just a very busy one. We were all so tired when we got back home. I was pretty worthless for the night. I cannot expect anyone to care about all that goes into what seems like a simple field trip like that. Most really do not understand and I suppose that’s okay. But when people are staring down their nose at my son and looking at me with disgust like he bothers their “fun time” with a reality I must live with every single day…it just makes the pain go deeper. And it makes me want to stay in the cave where it’s safe.
Maybe next year I will be more prepared for the fight… right now there’s so much going on with home health and just living from one day to the next it gets so tiresome to fight. And it seems sad to me at least that I have to fight for a sense of normalcy that most can just accept as part of their day….trust me – the pain is deep and I do not need strangers’ blank stares and curled up noses to know how not-normal our lives are…The last thing I want to do is have to fight to enjoy a day out! I really do not want to get hard, or bitter or pushy…but I refuse to take this laying down! So move over world – you might as well get used to us messing up your perfect day!
I know it’s been a long time since I shared…anything…with anybody really. But tonight I am just sitting here staring at the computer screen waiting for the clock to get to 11:30 when I can bolus Chris then go to bed. I may actually get 5 hours of sleep tonight – if Chris and my knee let me! I never count on it though. I may go back to bed after I bolus him in the morning and try to catch up since the aid doesn’t come until 11:30 on Wednesday.
So I look at the paragraph and think about how many little phrases have huge stories behind them. Like my knee…a small break in the knee cap – it’s tiny and I would not believe it myself except the doctor showed it to me — more like made me look at it – she kept saying I was in denial…I would probably still deny it (yeah, guess she was right!)…if it wasn’t waking me up at night when I bend it in my sleep. I’ll sleep with the brace on for a few more nights then see if it’s better again…
And of course with a bruised/busted in some way knee cap I cannot run. I can try but the pain is excruciating! I can hobble along for a little bit before it feels like someone stabs the right side of my knee cap with an ice pick! (btw – that is the same feeling I get at night while I am trying to sleep!!) – frustrating since I used running to deal with so much of the stress. Oh well – my emotions are fried so who cares about the stress anymore?
Then there’s the aid situation.. I really cannot go into it – but anyone who has ever needed an in home aid knows the frustrations of trying to find a reliable one! Just trust me that there is a big hairy story behind it!!
But all in all there are some really good things going on right now. My friend is staying with me for a while to help with transferring Chris and all since my knee is busted. (It is really getting better by the day/week… I figure a couple more weeks and I can try to get on the treadmill for a mile or so… we’ll see… it still swells when I am up on it too much – brace or not…) It’s been good having someone around. At least I do not hear only my own voice all day now…I dread her leaving but I know the day will come….
We have been able to get Chris out about 3 or 4 times each week and he is getting so good at getting in and out of the car. One of the places we took him last week and plan to go back is Among Friends. It’s for adults who have disabilities. I was really scared to take him…but he did well and it wasn’t too bad. Just makes me have to admit my son has brain damage…but it’s a safe place.
I really cannot talk about my emotions right now.. not sure what they are doing. I am happy for the progress Chris is making… very happy. But I am also sad and living a grief over the son I have lost..very sad. My emotions totter back and forth until they wear out and I just exist….
I know that taking Chris out is also good for me – and I am trying to add that stimulus for him. (and he’s doing well…) but it is so difficult to see the stares…blank stares…and to hear the silent questions no one has courage enough to ask…struggling to get through doors, into and out of buildings and up ramps that are supposed to be handicapped accessible…the simplest things can become the greatest chore when we are out…by the time we get back I am tired…body, soul and spirit…I guess that’s where I am tonight. And I know all the right scriptures to “say”… they that wait upon the Lord shall renew their strength… so maybe I am not “waiting right” is what my religious mind tells me…but I don’t listen…because I don’t care… I exist.
I am not even sure where faith is in all this either. I know I keep working with Chris, for several reasons:
- I love him
- I will not give up
- he keeps getting better!
- God really did promise… even though I cannot see or feel it…and even though I have my doubts
I’m still mad at HIm (it’s no secret He knows it already! – and He’s big enough to handle my tantrums and my pity parties…) He broke a trust that I guess my religious mind has supposed… that He was watching out for my kids. And it really does leave me in fear – I do not really know if He will watch out for my daughter and grandbabies…and I do not know what I would do if anything happened to any of them…and I do not know where to put that fear…I do not know how to handle it…
Actually, I do not know how to handle a lot of stuff…or maybe I just don’t know how to handle anything anymore. I simply exist.
Well, I have 5 minutes until I can at least start the process of going to bed… should be in bed by about midnight I hope. That gives me 5 hours to be horizontal…then I will wake up and face another day. I’ll take it as it comes and appreciate the little things like the fact that we are still breathing; or that I have food to eat…it’s funny how these sorts of things can change your whole perspective on life. So many of the things I used to put so much stock into seem so trivial now…I feel trivial now…I am hoping that there will be an end someday – and I hope it’s a good one. Until then I just have to keep putting one foot in front of the other one and do whatever my hands find to do….and just know that God is really out there…He exists too….
So we got all moved and Chris has done so very well with the transition. Actually I think he has improved even more since we’ve been here this week. While I’ve been excited to get the car and be a little more mobile I have also dreaded getting him out. It can be such a hassle to do all the things that go with just a simple outing. I decided that we would go out once a week period. No matter what the hassle is he needs to get out – and it does me good as well…even though it’s a lot of work.
So far I’ve taken him to my sister’s house and then last week I counted moving him over to the new apartment. This week was slipping by and so this afternoon I decided to take him out to his sister’s house. He basically grew up out there and it should be very familiar to him. Well, he is doing so good with transfers I wasn’t too worried about getting him in the car – just out as it sits a little low. But when we got there and even when we got home too he just stood right up and got over into the chair both times! His improvement in mobility has been simply amazing this week! It was so easy I wasn’t sure why I was dreading it so!
The one good thing right now is that he is really awake most of the time still. This just amazes me too. I am working on his voice each evening and he’s gaining more control there too. On one hand I feel like I need to do so much more with him… but I’m not sure what and how much. Someone told me today that they heard I should push him to the point of frustration because it will help him. Well, you know what – I’ve watched people do that to him in almost every place we’ve been over the last two years — and I don’t get the point! Yes, I agree I should push him as hard and as much as I can. And push him to the end of his tolerance. But brain injury patients have enough anger and aggression to deal with – I think I will try this more patient approach. Hey – it seems to be working! He is responding and I wouldn’t want to do something to make him mad enough to stop. He’s seriously trying for me… I’m not willing to break that cycle for the sake of any textbook methods. Sometimes an education can hinder you from your goals.
I am just thankful for all the progress I’m seeing in Chris. I miss him so badly and I miss who he was so much I can hardly stand it. I don’t know what kind of Chris will emerge – or even if he will – but I am thankful that he continues to progress. He is getting more and more aware all the time…I just hope I can “help him right.” Here’s a picture from today at his sister’s house.