Tuesday, September 15, 2009

For Your Entertainment - the Wheelchair World

It has now been 6 months since I have become paralyzed and in a wheelchair full-time. I thought, that instead of becoming mopey and sad on this momentous anniversary, that I would bring you up to speed about some things in the wheelchair world to enlighten those of you who are what “we” call “able-bodied” - hence known as AB.

There is a difference between “using” a wheelchair and “needing” a wheelchair. For the “user,” they can have all the Wal-Mart and grocery store wheelchairs out there. For those of us who “need” wheelchairs - these just will not do. Our wheelchairs cost anywhere between $1200-$6,000. They are customized to our bodies to “fit” us. They are not a one-size-fits-all. The cheap wheelchairs, although very affordable, will not work for us. I learned this valuable lesson one day at a K-Mart. I decided that the person that I was with, needed my wisdom on how to load my wheelchair and the shelves we just bought into the trunk of my car. So, there was a trusty old wheelchair with a big metal basket across the front of it that I thought I would transfer into and then be able to help put my chair into the trunk. All was mostly well, until it came time for me to then transfer out of that chair into the driver’s seat of my car. Because of the big old feet on those things, you can’t get in close to the driver’s seat because the feet hit the door. Then, when you swing the basket out of the way, it leans against the car and you can’t get around it. Then the armrests on those things are up to your shoulders so it is hard to get around that! Needless to say, thanks to the rail that is installed on the roof of my car, decent upper body strength, and a crazy Tarzan-like movement, I made it onto the door sill of my car and then onto the seat. It was very comical and I learned my lesson. Cheap wheelchairs are for those that can walk and get in and out of them. So, when you see a chair with no arms, little front wheels, low backs, and they don’t look like the ones you see at your local store - there is a good reason!!

Now, you have stumbled into the unique world of full-time wheelchair users. It isn’t every day you run into someone who uses a wheelchair all the time. Because of this, people are unfamiliar and therefore, a little uncomfortable knowing how to act or what to say. This always sends a chuckle to me and I have a very bad habit of getting tickled and then I can hardly control it. You’ve got to love the ones that talk very loud to you as they lean over and look you in the eyes. What is it that makes them think I am deaf? Or the person that pats me on the head? Or those that come and lean on the back of your chair like it is their personal perch? This is why we hate handles on our chairs! There are so many things that I want to say but I try to hold it in. When I hold it in, this starts the conversation in my head and then I get tickled at all the comebacks I am trying not to say and start laughing. While I am then sitting there laughing out loud at something that has not been said out loud, it is then I realize why they pat me on the head!

So, this moves us on into the mind of the wheelchair user. There are many things that we have to think about. Other people’s feelings are one of those things so while I am trying to deal with my own thoughts and emotions of being the only person in a store in a wheelchair, now I have to also think about your feelings as I try to deal with you. For example, I am in the doctor’s office, and after signing in, the receptionist tells you to go have a seat. I am laughing inside, but after the receptionist gives me her look of horror as she realizes what she said, I must then have to figure out how to console her. This leaves me very puzzled. I want to laugh because I already was inside, but if I laugh, then she might think I am insensitive to her look of horror. Therefore, I am stuck. Not knowing what to say or do to console the poor lady, I manage to smile and say, “Thank you.”

Then, you have the times when you are in line and someone leans over your head to get something as if you are not there. Inside of me, I want to back up real fast and squish their toes, but I don’t want to upset them so I smile and say “Excuse me.” “Excuse me” also comes into play whenever you roll up to a counter for help and the top of your head comes to the level of the counter. You really hope that they will notice a new hairline is at their station and needs attention, but instead of waiting, we will eventually say these two words.

A common problem for wheelchair users is whenever there are steps. Now, if I am home or somewhere I am really comfortable, I would just plop out of the chair and go up or down on my backside. However, this is not very ladylike in public places so you are left to the mercy of those around you. People are very kind and more than willing to help. If it is just a few steps, the decision is normally to turn you backwards, tip you way far back so that your toes are parallel with the top of your head, and thump you down one step at a time. Now, this does something to a girl’s identity. This is not the look that I am going for when I am out in public surrounded by men who are helping you get up or down the steps. I am convinced that feet are made to be lower than the head. If the steps are long, then the solution is to pick me up - chair and all - and be carried. This normally involves 3 or 4 strong guys who each grab a corner of your chair and haul you to where you need to be. So far, this has always been successful. However, in my head, as I am being tilted or carried, you are trying very hard to suppress a scream of “Please don’t drop me!!!!!” Instead, we politely say “Thank you.” All in all, although we may not have control over certain parts of our bodies, I would say that we have great mental strength. We are able to take our thoughts and completely morph them into something kind. We do this for you!! Aren’t we sweet?

A hot topic for everyone who is in a wheelchair is handicap parking spaces. Now this requires great mental discipline. For one thing, we HAVE to have these spaces. Not just for the perk of getting to park close to the door but there are real reasons. For one, we have to have the wide spaces to get in and out of our cars. Some have ramps that unfold out of their vehicles and need the space to be able to get their ramp out. Others of us, transfer in and out of our vehicles, but we need the door to open up all the way so that we can get in close to our seats so we don’t end up on the ground. So, if your car is parked in a normal spot and I am in a normal spot, I cannot get my door open all the way, therefore my chair cannot get close to the car, then I can’t transfer safely into my car and alas, I am stuck. If there are no handicap spaces available, then we have to park out in no man’s land so that we can have room to get in and out of the car and no one will park next to us. Now, this isn’t really a problem because I can roll 200 feet as easy as I can 25 feet. However, since I am vertically challenged now, we have the same problem as when I roll up to a counter. People that are backing out of their parking places cannot see me in their mirrors because I am only as tall as their trunks. This makes it dangerous for me as I roll past the trunks of many cars because I parked out in the boonies. The other problem with this is when it rains. Ever tried holding an umbrella while trying to use your arms to push yourself? It doesn’t happen. I would rather only be rained on for 25 feet than for 200! So, this leads us to who parks in these spots? We have a hard time understanding how people can park in these spots at malls and department stores and then go in and walk around for a couple hours. Hmm. I have amused myself before by going into a store (after not having found an available handicap parking spot) and seeing how many people I see in wheelchairs. Maybe once or twice have I seen someone that you can tell is a full-time user. Otherwise, they are in the electric scooters or the store chair which leads to the question that if they can walk in the store to get into one of those things than could they not have parked in the other spot and walked 5 more feet and left me with the extra space that I need? However, to be fair, I want to present their side. They did not know I was coming to the store that day. If they did, I am sure they would have given me their spot. Also, if there are so few of us, that I have a hard time spotting someone like me, then all the handicap spots would be mostly empty all the time and that would be a waste of good parking. Unless, of course, we could take a poll on how many of the cars that you see scattered along the empty back lots of stores really belong to the full-time wheelchair users. So, I have decided that to remedy this situation, I am going to ask all of the stores and restaurants I frequent, to install an automated intercom system over their parking lots. When I am ready to leave home, I will Twitter them an update and a loud call will go over all the parking lots of my town - “Alicia is coming!! Get out of her way!!”

Another topic of interest is how to be politically correct about all of this. What is my label? Am I crippled? Handicapped? Disabled? Physically impaired? Abnormal? This has been a laugh for me with some of my friends. They say they just can seem to find the one that fits. I am sure most that know me would argue that “abnormal” would have to be the most fitting but we won’t go there. I just read an article that said you are not to say that a person is “confined to a wheelchair”. They said that makes it sound like a prison sentence or something. True, we are not confined but maybe defined. That is not fair maybe but is realistic. “You know, that lady in the wheelchair” or “She can’t do that. She is in a wheelchair.” I warn my husband to be careful saying those last words. That’s all it takes for me to scale an all out attack to accomplish whatever it was that I was just told I could not do. He said he says it on purpose sometimes just for that reason. That’s good. I need pushed - no pun intended! Other times he regrets saying it! I got a wild idea that I would like to ride horses. They say it is good rehab and so I mentioned it to my dad. He looked like the idea scared him to death. He was wondering how in the world I was going to stay on that horse and I was trying to reassure him that it could be done safely. As his skeptic look increased, I finally said “Dad, what is the worst that could happen? Fall off and become paralyzed?” For some reason, he did not see the humor in that. So, my label? I don’t know. I am just me - the new me and I have always looked for humor and will continue to do so. Not because I am in a wheechair - but because a merry heart doeth good like a medicine.

There are a lot of negatives to being in a wheelchair and if we dwelt on that, we would all be depressed, so we are not going to. The point of this epic was to entertain you so that is where we are going to stay. So, in true Pollyanna fashion, and in conclusion to this meandering monologue, here are a few perks:

1. Close parking when available
2. I never have to look for a seat when I go places
3. When you accidentally run over someone’s toes, they say “I’m sorry!”
4. You can buy expensive shoes because they never wear out.
5. Going down hills feels a bit like a roller coaster. Going up...different story!
6. I hear in some circumstances, this moves you to the front of the line (amusement parks, airplanes, etc.) Not tried it yet, but I will!
7. You can look really pitiful when you start to have an argument with your hubby. This hasn’t been as effective as I had hoped.:)
8. You get really strong arms and can impress your kids. They actually think you have muscles!
9. It helps you keep the clutter picked up off your floor. It has to be moved so you can roll! Kicking a toy across the floor is no longer an option so this helps me not to procrastinate!
10. You have an instant invisible bond to any other person in a wheelchair. So, you have an
instant friend. That is always good.

I hope you have been somewhat informed and shared a chuckle with me as you have read this. I think a sense of humor and being able to find the funnies in life - even in tough circumstances - is as good for your mental health as aspirin is for a headache. Not everything is funny, but there is a lot of humor through all of this that you can find if you are willing to look for it.

Enjoy your life.....and smile!

Tuesday, September 1, 2009

Do I Trust Him?

After the panic I felt last Sunday when I had the vertigo so bad, and having had so many complications and not knowing what was about to happen next, this week led me to some heart-searching questions.

I have purposed to be 100% honest on this blog. Knowing that I am human and full of my flesh and pride, it is easy to talk of the spiritual victories the Lord has given me and to share of the many special "graces" that He has shown me along the way. All of that is fine and good, but life is not all spiritual victories. So I want to be honest and share the struggles along the way also.

Last Sunday, as silly as it seem now, scared me to death and for the first time, since all of this, I felt panic, fear and discouragement. I knew the spinning room was not killing me - my heart was beating and I was breathing just fine - but it was the fear of the next minute. Not knowing what was wrong, not knowing what was about to happen. Was I about to become paralyzed from my neck down? Was I going to die? What was wrong? Fear filled my heart and I did not even want Jimmy to leave me for a second!! I have described these feelings in my earlier post about it, but I wanted to go there again because these feelings led me to questions once I had calmed down.

By the time the room had stopped spinning, my mind began to spin with these questions: How can I say I trust the Lord when I was so afraid? If I truly am ready to die and go to Heaven, then how come I want to live so badly and don't want to die? If I believe the Lord is control, why do I fear? If I am to be a joyful Christian and have a good testimony for the Lord, then why I am I struggling with feeling like I am getting discouraged and can't do this? If I feel like the Lord has given me something and His grace will be sufficient, then why I am suddenly panicked - not knowing what the future holds? If I have been through many of these questions in my mind already and feel like I found answers, then why in the world am I asking them again?!!!!

I have found answers this week and they have come in a variety of ways.Here are some of the ways that have helped me this week to answer some of these questions:

1. I talked to Jimmy. I always talk to my wise hubby about these things. He already told me I wasn't allowed to get discouraged so I knew that was out of the question.:) Seriously, I did talk to him because I know that he will always tell me the truth - even if I don't like the answer. So, we talked. After talking to him, I felt a little more settled in my heart knowing that he did not think I was a spiritual baby and that he shared fears of the unknown also. We know that we must trust the Lord - in good and bad - and even though it is hard to do, it does not change the fact that we must. His strong faith in God is what I need to hear often to remind my more female and emotional heart to not fear what is around me but to trust Who is in me.

2. I prayed
. I asked the Lord to help me - not only physically but emotionally. I told Him I was afraid. I asked Him to calm me down. I asked Him to help my scared hubby and children. I asked Him to please help me to be strong and be a testimony for Him and not to fail Him. I prayed verses to Him - "When I am afraid, I will trust in Him." "Though He slay me, yet will I trust Him" "Yea, though I walk through the valley...I will fear no evil for THOU art with me." Every verse I could think of, I prayed to Him. Not that He needed reminded - I did and it helped to talk to my Heavenly Father about it.

3. I got online this week and found Joni Erickson Tada's website. On it, she has a TV series where she interviews people with disabilities that are Christians and to hear their testimonies, and how they love and trust the Lord, but still have fears helped me to know that I was not alone.

4. Music!!
Music has always moved me. I will not say spiritually because quite frankly, I can get pretty sappy about Little House on the Prairie when the right music is behind it!! The power of godly words with Christ-honoring music set behind them, stirs my heart. Or just an instrumental of the old hymns playing as the words run through my mind calms my heart so much. I have sat and listened to some songs over and over and they just keep blessing me.

5. Going to church!! Really, when God tells us not to forsake the assembling of ourselves together that we may edify one another is really so true. I know when you are sick, you cannot help not being able to go to church but going back last Sunday was SO encouraging. Hearing the songs, the preaching of God's Word, the fellowship of believers - it was all so encouraging. I do not know why people choose to not go to church. Not me - I need it!!

These things all helped me this week in answering my questions.

How can I say I trust the Lord when I was so afraid?
Because it is through fear that our trust is tested. It is easy to trust when things are easy. It is in the fearful times, that we choose to trust or not.

If I truly am ready to die and go to Heaven, then how come I want to live so badly and don't want to die?
Because the human nature comes with an instinct for survival. If my head was under water, I would not stay there trusting the Lord. I would try to swim. I enjoy my life, and I enjoy living. Heaven will be wonderful, but earth is good too as we live for Christ. I want to do so much more for Christ - I don't think that is a bad thing. I want to meet my Lord with more than I have right now.

If I believe the Lord is control, why do I fear?
Because knowing that He is in control and letting Him control are two different things. My flesh and spirit always struggle and in my spirit I know that I want Him to be in control but in my flesh (which is weak) I want to call the shots. But, His ways are not my ways and therefore, when I should trust, I fear.

If I am to be a joyful Christian and have a good testimony for the Lord, then why I am I struggling with feeling like I am getting discouraged and can't do this?
Because I am learning that it is not about me at all. It is through my weakness and struggles that the Lord uses to strengthen us. An internal strength that can only come from the Lord - beyond words or personality. Our inner strength is from looking up - not looking in.

If I feel like the Lord has given me something and His grace will be sufficient, then why I am suddenly panicked - not knowing what the future holds?
Because I don't see the tomorrows. Reminding myself over and over though that He does, is what trusting is all about. No matter what changes happen in our lives, He never changes and therefore He is so trustworthy.

If I have been through many of these questions in my mind already and feel like I found answers, then why in the world am I asking them again?!!!!
Because I am human and so cocky and confident at times. These "rapids" in my river of life, help me to realize how truly weak and needy that I am. They knock a cog out of your wheel to let you see that you really don't have it as much together as you thought you did and how desperate you need Him. I am not getting worse and worse, I just need Him more and more. These times show me this.

I hope that I will not have to learn this lesson over and over but I know that I will. We have to die to our flesh daily and I know that it is in my flesh that I struggle to truly trust Him. It is my prayer that I will stay close in fellowship to the Lord so that the spirit will be stronger than the flesh and will win more battles!

Please, help me pray for this.