Finding joy in life is not always easy regardless of your circumstances. I believe every person struggles to feel joy at some point in their lives. Joy seems the least attainable when we or someone we love are suffering, which is why finding joy when your loved one is suffering daily can be extremely challenging.
So how do you find joy? It is such a great question. My sincere belief is that joy can’t be found in a place, a person or a thing, it has to be chosen. I know the word “feel” is used a lot when talking about joy but if there is one thing I have learned over the years, it is that you can’t trust how you feel. Feelings inevitably change. One day I might “feel” like having Mexican food for dinner but the next day I might “feel” like having pizza. One day I may wake up and “feel” like I never do anything right, discouraged and beaten down by life. But later that same day I might get some really great news and all of the sudden I “feel” like I am on top of the world and I can accomplish anything. I hope you are starting to understand what I mean about trusting our “feelings”. Don’t get me wrong, feelings are important and totally valid because they express how we are seeing life at any given moment in time. However, I think it is very important for us to realize that our feelings are constantly ebbing and flowing with our changing emotions and circumstances.
We choose our behaviors, whether consciously or unconsciously each day and those choices may even change throughout our day. For instance, if Bob wakes up in the morning and he is mad at his wife, Bob is likely to be grumpy towards her until the issues between them are worked out. Bob could then arrive at work with a cheerful smile and chipper attitude towards his co-workers. Bob can choose to be kind to them since his co-workers did not upset him. These behavior choices are directly affected by how we “feel” in the moment.
There are some days I wake up and I am feeling good mentally, physically and emotionally. Those are amazing days and choosing joy is super easy. But there are those days when I wake up and I am not feeling good, maybe I have a headache or a cold. I might wake up with sore muscles and I may just feel a little down. Those days are very difficult to choose joy and while I may not always choose to find it, I do know ways to help myself feel joy in spite of how I am feeling. Here are some of my go-to’s when joy seems unattainable:
Three things that may help you in finding joy
1. Count my blessings- it may sound old and cliché but it’s true, I start speaking out loud all the things I am thankful for in my life and I am intentional about not letting any negatives creep in. Some people might like to do a written gratitude flood- writing down every blessing, and hanging it somewhere that they can see it through out the day to help remind them of the good in their lives.
2. I put on music- for me it is always praise and worship music but it could be any upbeat music with a positive message that gets your spirits up and may even make you sing along…for an added dose of joy…dance!! Not only is dancing fun, but getting your heart rate up naturally helps to fight off the “blues”.
3. Find a way to bless someone else- one of the best ways for me to get out of a grumpy funk is to find someone else I can help. It might be bringing someone a meal, sending a handwritten note or even picking up the phone to call someone just to let them know you were thinking of them. Brightening someone else’s day never fails to bring me joy.
“We are the only person in charge of the choices we make” is something I tell my children often. I can’t make choices for them and they can’t make choices for anyone else, we all have to make our own choices. When we realize that we can choose our behavior and we can choose joy, I think it really empowers us to stop letting our emotions and feelings control the way we act. I wish I could say that I am an expert at living out these truths everyday in my own life, but I am human and I fail often. However, knowing these truths allows me to reign myself in when I am in a funk for a day or two. I believe we are all going to feel down sometimes, but I also believe we can choose to pull ourselves out of the mire and find joy even in the most difficult of life’s situations.
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Disabled Parking Do’s and Don’ts
What are the different kinds of disabled parking and how are they marked?
There are two different types of disabled parking spots that you might see in public or private parking lots. Disabled parking places must always be marked with the international symbol of accessibility which is a blue sign with a picture of a person using a wheelchair in white. If the sign appears by itself, that is a standard car accessible parking space which may have an access isle of 60” between two accessible parking spaces, but not always.
The other type of disabled parking spot will have the same sign but in addition you will see the words “van accessible” under the picture. This space is specifically for disabled persons driving a van that has a side loading ramp which requires more space. These parking spaces have a larger access isle (96” wide) which is the area with slanted lines (usually blue or white) directly next to the van accessible parking space.
If you are a disabled person, does it matter which spot you park in?
ADA law requires at least one disabled parking spot per every 25 spaces in a lot. If there is only one spot it is required to be van accessible (according to the current law). So, if you are parking in a lot with only one accessible spot it is open to the first person who has a placard or plates that allows them to park in that spot. However, if you are in a larger parking lot with several accessible parking spaces, there is definitely some common courtesy that should be considered. Persons not requiring extra loading space for a wheelchair or walker should always park in the accessible spots that are provided that offer no loading space but are simply close to the building. Only if those are full or not provided should that person park in a space with a loading zone. Even more, no one should park in a van accessible zone unless they have a van with a ramp for unloading unless there is absolutely no other accessible spot available. I have witnessed a person parking in a van accessible spot when there were literally 10 open accessible spots and half of them did not have loading zones. That person did not take into consideration that a person with a van ramp cannot even get out of their vehicle if there is not a space for their ramp to drop and for them to roll down and past to safely exit their vehicle.
Who can use disabled person parking?
Disabled parking spaces should be used ONLY by persons with the disability. If you “borrow” someone’s placard so you can get a “good parking spot”, well there is nothing else to say but shame on you! Please consider that when you do that, you are keeping someone with a true disability from having the parking space they need, and in my husband’s case, preventing them from even getting out of their car. Each state has its own forms and criteria for handicapped parking permits. Typically, the state’s DMV runs the program. Usually, the DMV will need your doctor to verify your medical condition. If you’re visibly disabled and appear at a DMV office, the requirement of a physician’s certification might be waived in some state
My Biggest Pet Peeve about disabled parking
My all-time biggest pet peeve is when people don’t honor the lines of accessible parking!!! Just last week my husband and I were attending a gala for our local pregnancy health center when we pulled into the only available “van accessible” spot to see the very rude parking of the person in the space next to the loading zone between us. Sometimes when this happens my husband has to hope he can stop or turn in time when coming down the ramp and sometimes he runs into the car with his foot plate or the blue side bar of his wheelchair as he turns. I never feel bad for that person if their car gets a mark on it because honestly, if you park like this you are just asking for a dent in your car in my opinion. It just doesn’t take that long to back up and park between the lines to be sure you are allowing the full loading zone for someone with a ramp.
Let me share some ridiculous stories with you of a people who actually defended their foolish parking that prevented my husband from getting back into his van once it was parked in a public parking lot. The first story I will share took place at our church, but it was for a non-church related event. Each year in the city our church is located in, there is a wonderful firework display on July 3rd for the city’s birthday. Our church parking lot just happens to be the perfect location to view the fireworks display so naturally many of our church members along with people from the community gather to watch the show. The parking lot fills up closer to 9pm when the fireworks go off, but we get there hours ahead and have a meal and hang out with friends. This particular night it was pretty chilly outside so as soon as the fireworks were done my hubby headed for his van to get out of the cool air even though he knew it would be quite some time before he could actually get out of the parking lot. A friend of ours walked with my husband over to his van only to find that someone had parked their car in the loading zone making it completely impossible for my husband to drop his ramp and get out of the cool night air. My hubby had a much better attitude about all of it than I did when I heard about it later. Eventually a guy comes up to get into the car parked in the loading zone and my husband very calmly said “hey man, your car is the loading zone and I can’t drop my ramp and get into my van”. Then the guy actually had the nerve to say to my husband “yeah, I HAD to park her, you know?” My husband said he just shook his head at the guy. It is a good thing for that guy that I had no clue that was happening, I most certainly would not have been so nice. I was so angry when I heard this story. No apology or taking responsibility for what he had done, just a lame statement that was in no way true. He did NOT NEED to park there. I guess the part that bothers me is how inconsiderate people are about the needs of others, thinking only of themselves in the moment.
Another great story took place last December when we were leaving from our company Christmas party. Here is how the car was parked:
Here is what I posted on Facebook that night along with these two pictures:
{I love it when people park over the loading zone and see Bill trying to get in his van and act like it’s no big deal. Why are people so inconsiderate???
Apparently, the older woman driving had been drinking because the passenger in her car asked her if she was okay to drive!!! She couldn’t park right sober so I would be very concerned about her ability to drive after having some drinks.
I told them they were parked in the loading zone to which they both didn’t seem bothered. The passenger told me “yeah yeah it’s okay”. I told her it was NOT okay because we would be stuck waiting for them if they hadn’t come out. I told her loading zones are for people in wheelchairs to get in and out. She then told me to go have a whiskey and shut up!!!}
I mean really? You can’t make this stuff up. Some people seem to feel the need to defend their foolishness and not accept responsibility for their actions. How can we ever expect the next generation to be kind and courteous and accept responsibility when some of the older generation is not modeling it for them?
I hope after reading this you will think more about respecting disabled parking spaces. Think about the person that might be affected by the way you choose to park. Please take an extra 20 seconds to back up and adjust your parking position if you are over, on, or even very close to the lines for an accessible parking spot or loading zone. I encourage you all, able bodied as well as disabled, to be considerate and demonstrate kindness by being courteous of the parking lines.
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Traveling with a Quadriplegic Outside Your Comfort Zone
Traveling with a Quadriplegic
Traveling with a quadriplegic is not easy. Today I am going to share with you our recent experience traveling outside of our comfort zone. We have traveled a few places by airplane within the United States since my husband was injured including Washington D.C., Washington State, Hawaii, and Florida. We have also taken a few driving trips to Las Vegas, NV, Desert Hot Springs, CA, Lake Havasu and Phoenix, AZ. I hope to take the time to sit down and write a post highlighting some of the good and bad parts of each of those adventures in a future blog post, but today I am going to share our most recent travel experience. We traveled out of the country to Cabo San Lucas Mexico and it was hands down the craziest travel adventure that we have had to date.
It started out like a typical airport trip. We made our way through security and checked in at the terminal desk to let them know we were there and reminded them that Bill would need an isle chair to board the airplane. Thankfully, that information was in the computer and they were ready for us. We got Bill into the isle chair and then into his seat on the airplane with minimal issues and sent his wheelchair off to ride beneath the plane with all our luggage. The flight was uneventful and we enjoyed ourselves by watching movie together on Bill’s iPad. (Suggestion: remember to download your movies while you still have Wi-Fi so you have things to do on the airplane). The pilot announced that we were getting ready to start our departure and we looked out the window to see the beautiful clear blue water of Mexico down below. As we got closer to the airport we got further away from the ocean and soon all we could see was dry desert below. I honestly didn’t see any sign of civilization until we were just about to land. The pilots landed successfully and started to taxi towards to the gate where passengers would deplane. I started to notice that every plane I saw was parked on the black top and had a set of rolling stairs propped up against their door to let passengers off. I started to be a little concerned. A few minutes later we were coming to a stop…on the black top…no where near a terminal or jetway. I definitely started to panic at that point.
To say that Mexico is not wheelchair accessible would be a gross understatement, at least from the experience that we had on our vacation. However, what they lacked in actual accessibility, the people more than made up for with hospitality and willingness to help in any circumstance. Our first opportunity to see this in action was when it was time to get us off the plane. We asked the flight attendants if there was going to be a ramp or maybe a lift that they would bring to get Bill off the plane. They didn’t seem to know but assured me is must be something like that. Apparently, this was the first time either of our flight attendants had landed in Mexico with someone in a wheelchair. About 5 men boarded the plane after all the other passengers were off. They brought with them the aisle chair which Bill would need to get off the plane. I helped them get Bill from his seat to the aisle chair and asked the flight attendant again where the lift or ramp was. One of them spoke Spanish so she was able to communicate with the men and she looked at me and said in a solemn voice, “they are going to carry him down the steps in the aisle chair”. All I could say is “what?” I could not wrap my head around the idea that they were going to carry my quadriplegic husband down a flight of stairs while he is strapped into this aisle chair and completely at their mercy. I started to cry. Before I knew it, the men had swooped in and scooped Bill up and they were at the door of the airplane ready to head down the stairs. My crying turned to sobs and all I could was close my eyes and pray that Bill would make it safely to the bottom of those stairs. The flight attendants consoled me the entire time updating me on his progress.
(Here is a video of him on his way back up, by the time we left my heart had enough time to prepare for this so I was able to take a video and not panic)
Finally, he reached the ground and I let out a sigh of relief and thanked the flight attendants for their kindness. They wished us well on our vacation and I exited the plane. Waiting for us on the ground were several men to help us transfer Bill from the aisle chair to his wheelchair. It was so hot, about 95° which is way too hot for Bill as he overheats very easily. So, I moved quickly to get him situated in his own chair and on our way off the hot blacktop. Once inside the airport there was wonderful cool air to help Bill begin to cool down. A gentleman came with us from the black top and escorted us through every step we had to take in order to get out of the airport. He guided us to customs and because Bill was in a wheelchair, we bypassed the hour-long line and went right through (one of the hidden blessings of traveling in a wheelchair). Then he stayed with us to baggage claim and proceeded to collect all our bags for us and put them on a cart. Next he guided us to the taxi area and tried to help us find a wheelchair accessible taxi.
Once again, we became very aware of how inaccessible Mexico is for people in a wheelchair when we tried to find a taxi. The first desk we stopped at we explained to the man behind the counter that we needed a taxi that had a ramp or lift that would allow Bill to get in while remaining in his wheelchair. He assured us they had such a vehicle and we purchased the tickets to take us to our resort. Our trusty helper stayed with us to the taxi and helped load our luggage into the van. However, when we went to the side of the van, we noticed it was just a regular passenger van with no ramp. I explained to the taxi driver that Bill needed to stay in his wheelchair and would not be able to ride in this van. So, we got our luggage out and went back to the taxi sales desk. They refunded our money and tried to help us find a solution. It didn’t take long for me to finally realize that there were absolutely no vehicles equipped to load a wheelchair onto them with the wheelchair user still in it. They suggested we get a small private SUV taxi and have men lift Bill into the passenger seat. I was in shock that this was the solution, but they did manage to carry him down a flight of stairs successfully and since there was literally no other option, we decided that we would give it a try. They were very kind and only charged us for the group taxi price instead of the private SUV price, as I am sure they felt bad for all we had been through. Our taxi driver was very nice even though he only spoke a little bit of English which he told us he learned from Google translate! You have got to love technology. I asked him if there would be people at the resort to help us get out and he assured us there would be. I was finally able to sit back and relax after a very stressful airport experience. Here are some pictures of our SUV adventure. I had to take Bill’s wheel’s off and ride with is wheelchair frame next to me in the back seat. All of our stuff barely fit, but we made it work.
Sure enough, when we arrived at the Hyatt Ziva Los Cabos All-Inclusive Resort, there were plenty of men there to help get Bill out of the SUV. We were so thankful to arrive at our resort and immediately went to check in. We had arrived a little early so our room wasn’t ready but they gave us our wristbands and told us we could go and find a bite to eat at any of the restaurants on the property. We were tired and hot from traveling so we were hoping to find a nice air-conditioned restaurant to get a cold drink and some good food. We headed down to the buffet that was nearby. It was then that we discovered how tiny the elevators were on the property. This was a huge challenge for me because I am a bit claustrophobic and just not a fan of elevators in general. The sign read “4-person capacity”! Well when you put a wheelchair in there it barely held two people comfortably.
We made it off the elevator thankfully and headed towards the buffet. They took us in to help us find a table and we discovered that not one table in the entire restaurant was accessible for Bill to sit under. His foot plate could not get over the pedestal stands under all of the tables. The restaurant manager was very sweet and tried to find something that would work. He promised to have a table set up that would work for us the next time we came in and we decided to find the pizza place that was near the beach. It was beautiful and we found a shady spot where we could hear the ocean crashing on the shore as we enjoyed our yummy flatbread pizzas and cold beverages. The table were not accessible there either but Bill decided to just sit sideways and make it work because we were too hungry to look anywhere else. Unfortunately, we found the same problem at every restaurant on the property except the Asian food restaurant which we only ate at one time because the food was our least favorite of all the other places we had eaten. We wished they had at least one accessible table at each restaurant, but most of the time we just dealt with it.
Our room was the most accessible part of the property with all tile floors and a large roll in shower and lots of space to move around in a wheelchair. There was a desk in our room just under the TV that was actually accessible for Bill so we ended up ordering room service for breakfast each day so he could eat at least one meal a day in comfort. We had a balcony that overlooked the main two pools and even had a view of the ocean that was also accessible for Bill to enjoy. We watched a few of the night time shows from there which were performed on a stage set up in front of the largest pool.
The pools were not accessible so Bill was unable to get in and cool off. We ended up dipping his shirt in the water and putting it on him to keep him cool while he sat in the shade. The poolside service was great as we were able to get drinks and even yummy tacos served right to where we were relaxing by the pool. We ate all our lunches poolside because it was easier for Bill to eat on a plate in his lap than at a table where he was 12 inches away from the edge.
Overall, we had a very nice stay and enjoyed our time at the Hyatt Ziva. We did not go on any excursions or leave the property during our stay and I am so glad we didn’t because it was wonderful to just have time to relax, plus I don’t think I could have handled anymore stressful travel adventures than we had. I was able to take more pictures at the airport when we left because I knew what to expect and was much more calm. I share our story in hopes that it will inspire others to be willing to travel outside their comfort zone, you truly don’t know what you might be missing if you aren’t willing to at least give it a try.
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What is the Purpose of Marriage? Julie’s Perspective
What is the Purpose of marriage?
Have you ever stopped and asked yourself what exactly is the purpose and point of marriage anyway? Here are a few of the answers I have heard: so I won’t be lonely, so I have someone to do life with, so I can have a family, or so I don’t have to date anymore…LOL! I am not saying that any of these reasons are not good reasons to get married, but I don’t believe any of them are truly the purpose of marriage. There are many reasons why people choose to get married, but I’d like to share with you what I believe is the true purpose of marriage.
So, God created man in His own image, in the image of God He created him; male and female He created them. (Genesis 1:27)
Marriage was designed by God for His glory. I guess you could say that is my answer in a nutshell, but of course I will give you more than a nutshell answer. God didn’t need to create marriage, but He wanted to create it as a picture or an example for us to understand in some small way His great love for us. Marriage is intended to be an example of Christ’s relationship to the church. Christ, like a husband, is to love the church, like a bride. And the church, like a bride, is to love Christ, like a husband. Now, as humans that are imperfect sinners, the picture we create with our marriages will never live up to Christ’s relationship with the church, but it is our ultimate goal to work towards while we are here on this earth.
I guess before we can fully understand the purpose of marriage, we need to first consider the purpose of our lives. I know that can seem like a hugely overwhelming topic to some but it really is very simple and basic. We were created in Christ’s image to do His work for the glory of God. That is our purpose in this world, the entire reason God created us. He didn’t make us to be robots and force us to worship Him because we were programmed to do so with no choice or will of our own. Absolutely not, He created us with a free will to choose Him or not choose Him. Free will is why some people won’t agree with what I believe. However, for those of us who call Him Lord, our desire should be to tell others about the Father’s love and pray that they would choose to accept His free gift of salvation. Once we understand our purpose in life, we can better understand the purpose for marriage.
A lot of people think of marriage purely as a contract, an agreement if you will. That contract states I will do my part as long as you do your part. If you give 50%, I will give 50% and together we will make 100%. That is not how God designed marriage at all. Marriage is a sacred covenant rooted in covenant commitments that stand against every storm “as long as we both shall live.” In a covenant marriage, unlike a contract, each person promises to love, forgive and stand by the other person even if they aren’t holding up their end of the “contract”. It is a promise to God to love each other until death parts you. In a covenant marriage, each person gives of themselves 100% regardless of what their spouse is giving.
Staying married is not mainly about staying in love, it is about covenant keeping. When we let the thrill of “being in love” go, that is when we often find new thrills that are rooted in a covenant love. This kind of love is distinct from “being in love”. This is Agape love vs. Eros love. Eros love is a kind of romantic love where the lovers are hungry and passionate for each other, this is where many relationships begin. However, to truly last, a marriage must be based on Agape love which is divine love characterized by sacrifice in pursuit of your spouse’s good. Agape love is maintained by the will, strengthened by habit, and reinforced by grace, passing over each other’s sin.
We have been given the gift of marriage because God is good and He loves to give us good things. Sex was created to be part of marriage and most people would agree that it is an amazing gift. However, it should not be the foundation of our marriage because as many of you reading this are aware, the ability to have sex (in the traditional sense or any other way) may not always be present in your marriage. Those of us who have a spouse that is living with paralysis will have a variety of different ability levels that directly or indirectly affect the ability for them to have sex. However, our marriages can still thrive because we didn’t marry our spouse with the promise to “always be able to have sex”. That being said, I would encourage you to be creative in how you are intimate with your spouse regardless of ability. Don’t stop kissing each other, holding hands and all the little things that make your relationship different from any other person in your life.
Even the highest level of paralysis will allow for slow, tender, passionate kisses. Wives, don’t stop wearing sexy lingerie just because “sex” isn’t what it used to be, you can still be sexy for your husband even if you aren’t able to have sex the way you once did. Remember that men are visual and they receive great pleasure just from what they see. Trust me when I say I know it can feel awkward, but I challenge you to put yourself out there for your husband and do something sexy and unexpected especially if this is an area of your marriage that has weakened or become non-existent since his injury. Even a high-level quad is able to see and appreciate his wife in sexy bedroom attire. “A lovely deer, a graceful doe. Let her breasts fill you at all times with delight; be intoxicated always in her love.” Proverbs 5:19
Marriage is a blessing, but it takes a lot of work and commitment to thrive. My marriage looks very different today than it did 7 ½ years ago when my husband was injured. My love for him is so much stronger, deeper and more concrete because we have been through so much together. We didn’t allow his injury to drive us apart, we gave it all to God and trusted Him with the results and He has continued to be faithful in pouring out his blessings in our lives as we choose to honor him in our marriage.
I hope this has encouraged you today to keep working at your marriage and to give 100% no matter what you receive in return. I believe we are building up treasure in heaven as we love our spouses the way God has called us to. If you would like to receive more encouraging blog posts for spouses, please CLICK HERE and sign up to get each new post sent to your inbox.
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Caring for a Quadriplegic Spouse
Everyday life: Caring For a Quadriplegic Spouse
I remember when I was a child in elementary school my 6th-grade classroom was just around the corner from the Special Education classroom. I was always curious about the students who were in that class. Many were in wheelchairs and weren’t able to talk coherently due to mental disabilities. I always felt bad for them and didn’t want to stare because I knew it was rude, but sometimes I did stare because I really wanted to know their story. Had they been born that way? Did something happen to them that left them with a physical and/or mental disability? What was their home life like?
I was an inquisitive child, but my questions were never answered and I never learned their stories. Even as an adult, I would find myself curious about someone with a disability but of course as an adult I had the self-control to no longer stare (or at least hide my stare behind sunglasses). The truth is as humans we are curious about things and people that are different from us or what we know as normal. I don’t think it’s a bad thing but it can definitely become offensive if curiosity becomes nosiness.
Knowing my own mind and how much I wonder about others with disabilities, I thought it would be a good idea to share my perspective on what it is like to live with a quadriplegic spouse. I know that many of our friends and family would love to know, but are too polite to ask. I am very grateful for that because it shows that we are respected by those closest to us. Interestingly to me, it is often a complete stranger that seems to be boldest in asking questions, some quite personal.
Let me just offer a quick bit of advice right here…. please don’t go up to a stranger and ask them why they are in a wheelchair, using a cane or have a missing or maimed limb…just don’t. Ask them their name, where they are from, what sports teams they follow, if they have pets, etc. Get to know the person because the wheelchair is just how they get around and the disability is something they live with, but those things don’t define who they are as a person.
A lot of things changed on November 26, 2011, the day my husband Bill became a quadriplegic. The immediate change that we all felt was his absence. When he got hurt our kids were: Ethan 6 (turning 7 just weeks after the accident), Isaac 5, and Grace 3 ½. It was very hard on them to not have daddy at home and they only got to see him once on Christmas day while he was in the ICU. The nurses brought him outside in his hospital bed so he could see his children and get some much-needed sunshine on his face. Daddy wasn’t home for Ethan’s 7th birthday party. My heart was torn between being home that day for the party and being by Bill’s bedside where I had been almost every single day since his injury.
The hardest part for me when I would get home from the hospital each night was going into an empty room and sleeping alone knowing my honey was in a hospital room 45 minutes away. We were blessed to have friends and family take turns during the nights to sit with him so he was never alone and I could get some rest. I would come home so emotionally exhausted I would just pass out and sleep through the night until my alarm went off the next morning. I would shower, eat breakfast and spend a little time with my children before heading back to the hospital to do it all again. Our children were really missing both of us, but we had wonderful family and friends that watched them for us while I was gone.
Once Bill was moved from the ICU to a rehabilitation facility, I spent more time home with the kids and took back the role of homeschool teacher, cook and parent. It was tough being a “single parent” while he was in the hospital and really for the entire first year, he was home. He just couldn’t focus long enough to deal with behavior issues so I did it all. While he was in rehab, I saw him every 2 or 3 days as he was busy during the daytime hours with therapy and learning how to live as a quadriplegic.
It was hard to see the strong and independent man I loved become so weak and helpless. It broke my heart to see the struggles he was facing. But as hard as it was to visit him at the different hospitals and watch him struggle through treatments and therapies, the hardest part was when he finally came home after 31 days in the ICU and 42 days in the rehabilitation hospital.
Our rental house wasn’t designed to accommodate a person with quadriplegia. Before we could even get him in the house, we had to have someone build a ramp so he could get in the front door. I was able to find someone to make a modification to the shower we had so we could use a very low sloped ramp to get him into the shower. Looking back now it was so dangerous but by the grace of God, Bill never went over the side of that ramp or tipped in his shower chair. I had to figure out new and creative ways to help him do things that use to be done with little thought or effort. We made that house work for about 3 ½ years before we were blessed with the opportunity to buy a home of our own and make the modifications, we needed for him to live comfortably at home.
We have lived in our home for nearly 4 years now and it has been a wonderful blessing. Before we moved in, we modified the master bathroom to have a roll in shower and changed the location of the toilet to work with an over the commode shower chair. We took out all carpet in the living areas, hallways and the master bedroom and put down laminate flooring which is much easier for him to maneuver on in his wheelchair. A few doorways were made wider but that is all we had to do. The property is fairly large and is almost 100% flat and accessible. We added some cement paths out back and added a basketball court where Bill could play with the boys.
About a year and a half after we moved in, we decided to build an office for Bill off of our bedroom. He had been working in the corner of our room up to that point and it just wasn’t ideal. So after about 6 months of construction, he had an office that also doubles as his “man cave” with a ginormous tv he enjoys watching while standing in his standing frame every day. We have modified our home to work perfectly for his needs. The best thing is he can go in and out of all the exit doors without any ramps.
You might be wondering what it is like for me personally to have a spouse that is quadriplegic. It is my greatest joy to be my husband’s helpmate and care giver but truth be told it is a great challenge as well. I never planned to be a caregiver and yet that was a decision I didn’t really get to make; it was just a role that was given to me the day he came home from the hospital. What took a team of nurses, doctors and occupational therapists to do, suddenly fell on my shoulders…just me. It was a lot at the beginning.
I would feel so overwhelmed by the end of the day that I would go to the living room, lay on the ground flat on my back and just cry out to God. It was exhausting physically, mentally, emotionally and spiritually. I knew and trusted that God had a greater plan and purpose than my mind could possibly understand, but there were some days when I just cried “why me?” Then I would calm down and say to myself, “why not me?” What makes me so special that I shouldn’t expect the fragments of this fallen world to pierce my life in a traumatic way?
I was comforted to know that God was in control and I was not and, in those moments, I would surrender my hopes and dreams the Lord and trust Him. I honestly believed Bill would never work again, we’d be poor and struggle the rest of our lives living on the meager disability checks he received and we would certainly never own our own home. Ha! Those were lies from the enemy with the sole purpose of trying to get me to turn my back on God and curse Him. But I never did, I chose to trust Him even when there were more bills coming in than money in the bank, even when I was so exhausted, I didn’t think I could make it through one more day.
But I always did make it through the next day and then they next and still the next. In fact, I have made it through 7 ½ years by the grace and mercy of God. I have become an expert in taking care of my husband, there is no one who knows his body, skin, supply needs, etc. better than me…even better than he does. When he first came home our morning routine took me close to 3 hours to complete. I would get his breakfast and he would eat in bed so his legs could stretch out straight since they were bent while he slept laying on his sides all night. Then I would get him up in his shower chair, complete his bathroom routine and get him back into bed. Next, I would get him dressed and up in his wheelchair for the day. Then he would get back in bed for lunch and to stretch his legs for about 2 hours. Then I would get him up again until after dinner and after kids were in bed.
At bedtime I would turn him and tuck his pillows in all around, make sure his skin was safe and climb into my bed for a few hours. We would wake up every 2-3 hour at first to turn him. He had a pressure sore on his tailbone and we had to be sure to keep pressure off it to help it heal and we had to keep his skin safe so he wouldn’t develop any more sores. Those were some very hard months, a lot like having a newborn. Over the years, our routine has gotten easier as he has gotten stronger and I have learned to do things more efficiently.
After 7 years he opted for a colostomy and supra pubic catheter to make my job easier and make him more comfortable having others help him so I can eventually get away. For 7 ½ years I have not been away from him for longer than 16 or so hours when either of us left early in the morning and came back home late at night. His hope in having the surgeries is to give me the opportunity to go away for a night or two to the women’s retreat at church or just a weekend away with my girlfriends or my Mom. Our morning routine now can be completed in less than 1 ½ hours from waking up to having him completely ready for the day. He is very independent during the day now and because he can drive, he can even go get himself lunch at a drive through if I am unable to be home to make him lunch.
At night I help him get in bed so he can stretch out his legs for a few hours before going to sleep. Some nights I help him into his shower chair and help him get into the shower but now he is able to do all his showering on his own. I help him get back in bed, get him dressed and then we just relax. We have the Craftmatic adjustable beds so he can sit up with his legs extended so they can just be straight. We usually spend a few hours watching some tv, talking and just enjoying the calm and quiet in the rest of the house after all the kids are in bed. At bedtime I get him turned onto his side with pillows tucked all around him, make sure his skin is safe and he is comfy, and then I climb into bed and we crash out for the night. He sleeps on one side the entire night and we don’t have to wake and turn him anymore. Glorious sleep!
My husband is a quadriplegic which affects his ability to walk and limits his hand function, but his mind is sharp. He is a wonderful father to our children and we are a great team when it comes to parenting…although these teenage years sure are adding a lot of gray hairs! There are a lot of things he can’t do and I could list them all for you but instead, I like to focus on what he can do. He can be present with our family every day.
He works hard Monday through Friday to support our family so I can take care of him and our children. He plays board games, does a morning Bible study and watches movies with our kids. He also is very intentional about taking each of our kids on a “daddy date” once a month, just the two of them. They talk, get some good food and make memories together. Sometimes these are just simple lunch dates and sometimes they are Lakers games or Daddy/Daughter Dances. He makes a point to create a relationship with his children. He also makes a point to “date me”. We try to go out on a date at least twice a month, just the two of us. He also takes our family on vacations to places like Washington DC and Hawaii.
I guess you could say living with a quadriplegic spouse has its challenges, but really any marriage does. We just choose to embrace those challenges and we choose to adapt and overcome. We have found over the years if we choose to laugh more, we will cry less. I would never have chosen for my husband to become a quadriplegic, but now that he is, I choose to be thankful that he is still here and that he loves and appreciates me.
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How to Keep Your Marriage Thriving after Paralysis (Julie's Perspective)
What to do to keep your Marriage Thriving after Paralysis
This is the first of a two-part blog. This is mine (Julie) and my husband’s (Bill) story. We wanted to share with you how we have been able to not just “stay married” after paralysis, but how our marriage has actually been able to thrive.
I am not sure if we would still be married today if my husband hadn’t surrendered his life to Jesus just one year into our marriage. We dated for 3 years and were engaged for 1 year before we married on September 30, 2000. I loved him more than I had ever loved any man in my life. We had a good relationship but we definitely didn’t know how to communicate effectively. We are both very stubborn and competitive which made for some interesting battles. When we disagreed we fought and we weren’t very kind. We yelled at each other, brought up things from the past and often I would just stop talking to him. I honestly believe that if we had continued on the path that we started on, our marriage would have only lasted a few years before we both got tired of the fighting and stone walling and just gave up. But on September 13, 2001, just 2 days after 9/11…everything changed. We had attended a youth event with my brother and his wife at their church and the youth pastor spoke about end times. It was a powerful message that spoke directly to Bill’s heart and that night he gave his life to Jesus. Now I am not saying that everything magically changed in that moment, but I am saying that God started working in both our lives that very evening. Changes started to gradually happen as I returned to my faith (I was raised as a Christian but had walked away from my faith for about 5 years) and as Bill started to understand who he was in Christ.
The one thing that didn’t seem to get any better was the way we communicated, or rather didn’t communicate. We still fought and struggled to work through conflict in a productive manner. The Sunday morning bible study we started to attend offered a marriage conference and we both agreed that this was something we needed. During this conference they addressed communication straight on. They made us sit alone together, face to face, and gently tell each other things about each other that we didn’t like. We had to be calm, we had to make it about how we felt and not belittle or degrade the other person. It was the healthiest communication of sensitive subjects we had ever done. We were actually able to share our pet peeves with each other without getting into an argument. Once we were aware of those pet peeves and because they were shared in a loving way, we actually both wanted to work on them because we wanted to show each other we cared. When we learned to value the other persons needs and wants more than our own, we learned how to communicate more effectively and use our conflict to actually resolve issues rather than just stuffing them away only to have them boil over later. We attended several marriage conferences and our Sunday Bible study was for couples so we were able to go through many studies and understand God’s intent for marriage and how we could use our marriage to point others to Christ. These conferences and studies literally saved our marriage.
After about 2 years of learning and growing our marriage we decided we would love to help engaged couples learn these valuable tools before marriage to save them from the struggles that we faced. We became marriage mentors and were blessed to help out with several 8-week mentoring classes for engaged or dating couples at our church. Every time we went through the lessons with these couples, we reminded ourselves of the tools we now had and it just strengthened our marriage each time. I believe with all my heart that having this experience behind us made our ability to thrive in marriage even after paralysis that much easier.
However, I know not everyone had the same type of marriage before paralysis. I can just hear some of you reading this saying, “yeah, that’s great for you, but my marriage wasn’t all that great before paralysis and now it’s even worse”. I hear you and I want to assure you that there is still hope for your marriage. We truly believe that there is hope and healing available to any marriage if both parties are willing to do the work to make it better.
One of things that has helped us communicate effectively is humility. Learning to “die to self” basically and put the other persons needs and wants ahead of our own. You see, we both believe that our spouse loves us and truly wants what is best for us. We also believe that we are not each other’s enemies. With just those basic beliefs about each other, we are able to approach conflict with a much healthier attitude. We still disagree about some things but the way we handle those disagreements is what keeps our marriage thriving.
Learning to express how you FEEL when your spouse says or does something you disagree with can make all the difference in a conflict. Instead of attacking him, you are letting him know how his actions or lack thereof make you feel. For example, let’s say I feel hurt when my husband doesn’t appreciate the care I provide for him. However, I don’t tell him how I feel, I just take out my hurt feelings by being making rude, snarky comments or being short tempered with him. In doing this, I am only making a bad situation worse. He can’t read my mind!! He is never going to figure out that I am hurt if I am just rude to him. Like if I said, “You don’t appreciate anything I do for you, you are such a selfish jerk.” To which he is most likely to respond with an angry and unloving comment that just makes me feel less appreciated and hurt and causes me to want to be rude and disrespectful back.
However, if I can share with him in a calm and respectful tone, he is more likely to have a positive response. I might say “Honey, I do a lot to take care of you, and I want to take care of you because I love you very much. But sometimes I FEEL like you don’t appreciate what I do and you take me for granted.” The best time to communicate such feelings is during a time of non-conflict when you can look him in the eyes and speak in a soft tone. You can also encourage your spouse to communicate his feelings to you in a similar manner. This type of loving and respectful communication can drastically change how you feel towards your spouse and your marriage.
Communication is important for any marriage to thrive, but when you add in a disability of any kind it becomes even more important. Loving your spouse is a choice, everyday you have the opportunity to choose to love them. Just like everyday you have the opportunity to choose joy. Taking personal responsibility for your own role in your marriage is essential. If you want your marriage to thrive, you have to choose joy and choose love daily, even when…. are you ready for this…? even when you don’t feel like it and/or you feel that your spouse doesn’t deserve it! You are only responsible for your choices, not theirs.
There are several books and studies I would recommend as a guide for you and your spouse to help your marriage thrive.
First is the book Love and Respect: The Love She Most Desires; The Respect He Desperately Needs, by Emerson Eggerich (link below). If you can find a local church that is offering this course, I highly recommend it. However, if not, just reading the book can help make a dramatic impact on your marriage.
I would also recommend learning your spouses love language and having him do the same. It really helps you understand how your spouse receives love which is most likely different from you. There are 5 basic love languages and this book will really help you see things about yourself and your spouse that you didn’t realize were actually considered a love language.
The 5 Love Languages: The Secret to Love that Lasts
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Stay Positive and Encourage Others
How can you stay positive and encourage others?
“He comforts us whenever we suffer. That is why whenever other people suffer, we are able to comfort them by using the same comfort we have received from God.” 2 Corinthians 1:4
It can be very easy to focus on all the challenges we face as a spouse to someone living with paralysis. There are a lot of things that we could choose to complain about because the truth is, it’s hard. If your story is even remotely like mine, paralysis came after we were married, which means we didn’t “sign up” for this life…well, not in so many words anyway.
However, when I reflect on our marriage vows, I realize that we promised to love and cherish each other through all kinds of life circumstances. The one that stands out the most to me is “for better or worse”. That can mean so many things which is why it is a great promise to make to each other from the beginning. In our marriage “worse” has been the many challenges and heartaches we have faced together, but hands down the biggest one has been living with the results of my husband’s spinal cord injury.
I can’t honestly remember the exact moment when it hit me that our lives had drastically changed forever, I think it was actually more of a gradual realization than one specific “aha moment”. However, once I did finally come to that full understanding, I knew my faith was going to be tested like never before. I had 2 choices. I could choose to let this devastating life change make be bitter and angry towards God and life OR I could choose to allow the suffering and challenges make be better and draw me nearer to my Creator. I chose to trust God and let Him teach me to walk in faith in a way I never would have if my hubby hadn’t been injured.
It was a choice over 7 years ago and it is a choice I still have to make every single day. I try my best to choose to be joyful even when I don’t feel joy. I try to see the positive in my husband’s injury even when I am overwhelmed and frustrated by all the things that come along with paralysis. Does that mean I don’t have days where I want to curl up in the fetal position, stay in bed and cry while feeding my sadness one piece of See’s chocolate at a time? Absolutely not. I totally have those days and I allow myself those days because I think it is healthy to have those feelings. There is grief that still hits some days like a ton of bricks. I might see a picture of a dad picking up his child and swinging them around or I see a couple walking hand in hand. Just last week I was at the beach and I saw an elderly couple sitting together playing cards on the beach and enjoying their retirement.
Those moments can be tough because it’s easy to let my thoughts wander down the path of “I will never get to do that with my husband”. Even though those thoughts may be true, they don’t help me find joy. I choose not to allow myself to wallow in them because they only lead to sadness and that is never a good place to end up. When those thoughts enter my mind, I choose to replace them with positive truths that are much more likely to lead to joy and contentment.
Staying positive and choosing joy is an action, which means we have to do something in order to make them happen. Here is a short list of somethings you might do to help you find joy and choose to be positive when you are feeling sad, frustrated or at the end of your rope.
Make a list of all the blessings in your life, actually write them down. Then read them out loud to yourself. This always helps me refocus and brings a smile and sometimes even tears of joy to my eyes.
Ask friends, family, support groups, local church, etc. for encouragement and prayer. It always helps to know there are others out there thinking about you and praying for you. Other spouses going through similar struggles as you will be able to encourage you like no one else (there are many support groups on Facebook and maybe in your local community…get plugged in!)
Read an inspirational book like one of the many Joni Eareckson Tada has written. She is an amazing woman who has thrived with the paralysis cause by an SCI suffered when she was just 16 years old!! Any of her books are encouraging but I am sharing a link to a book about her life as a married woman:
If you are able, donate to a charity that helps with disabilities…there is so much joy in giving. (https://www.joniandfriends.org/)
Do something for someone else! Make someone a meal, bring them cookies, write a letter telling someone how much you love and/or appreciate them and mail it to them, really truly just do something selfless for someone else…it will bring you joy. Sometimes just taking the focus off of our reality can be a great attitude shifter.
SMILE!! There is something about smiling that is contagious. Next time you are having a tough day, smile at every person you see and I think you will be amazed at the joy you feel sneaking in…even better, smile and say hello to everyone you see!! This includes our spouse. Don’t grumble or complain to them, just smile and serve them with joy. Sometimes, when I am drying my husbands’ feet, I think about Jesus washing the disciple’s feet. If He could humbly wash dusty, smelly feet…I can take care of my husband with joy.
Now, find someone else who is struggling, maybe someone whose spouse is living with paralysis or maybe someone who is just going through a tough time in life. Listen to them, comfort them and just be there for them. One of the greatest things we can do when we figure out how to find joy in the midst of suffering and look at the positive side of tough situations is to share that knowledge and encourage someone else. Allow yourself to have sad days, but don’t allow yourself to stay there for too long (a day or two at the most). If you can’t seem to pull yourself out of the sadness you should seek some professional help.
Our attitude and outlook on life is 100% our choice. We can choose to be bitter…or we can choose to be better. I pray you will choose wisely!!
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Laughter is the BEST therapy!
Chuck Swindol said “laughter is the most beautiful and beneficial therapy God ever granted humanity”. This statement rings very true for me personally and for my relationship with my husband Bill. After Bill was injured, there was a season where laughter was pretty sparse and it was hard to see much hope for the future. In time, however, as he started to get stronger physically and started to process and deal with the loss of ability he was facing, laughter started to sneak back into our lives a little bit at a time.
I can honestly say that I felt guilty about laughing or even enjoying any part of my life when Bill was in the ICU for 31 days or the rehabilitation hospital for 6 weeks after that. I felt like I didn’t have the right to laugh or enjoy life knowing that my husband was lying in a bed paralyzed and fighting a pressure sore that he developed while in the ICU. I felt like I needed to be in a state of “mourning”, if you will, during this time. It was only when he started to smile and make jokes that I felt I could lighten up and start to laugh again.
Over the past 7 years I have come to realize that laughter is highly therapeutic for both of us when we are going through a difficult season. By God’s grace and mercy, it seems that we are never both feeling “blue” at the same time. When one is down, the other is always up and able to encourage the other. We try to make each other laugh even if the other person doesn’t seem to want to or even if they don’t respond with a laugh. There is something about knowing your spouse is trying to lighten your mood that starts to work on you and allows you to eventually get back to the place where you can laugh again. The joy of the Lord is my strength, without a doubt. Joy doesn’t mean happiness, joy is a choice and happiness is a feeling. But I have found that when I allow myself to laugh it is much easier to choose joy and the result produces happiness! Research shows that shared laughter is one of the most effective tools for keeping relationships fresh and exciting. When we share laughter with our spouse, we add joy, vitality, and resilience to our relationship. Laughter bonds us to our spouse during difficult times and humor can even help to heal resentments, disagreements and hurts between us.
There is a reason that laughter makes us feel better and let’s be honest, it’s fun to laugh! Now I am not a scientist so I won’t bore you with technical details but I will summarize and give you the gist of what research has discovered about laughter. Laughter is actually strong medicine and truly can improve your health! It pulls people together and can cause healthy changes in the body. Laughter strengthens your immune system, boosts mood, alleviates pain, and protects you from the harmful effects of stress. If you spend even a few hours with a child you will find they laugh frequently over a variety of things. However, as adults, life tends to be more serious and laughter unfortunately happens less often. We have to intentionally seek out opportunities for humor and laughter because when we do, we will improve our emotional health, strengthen our relationships, find greater happiness—and even add years to our lives!!
Laughter is actually good for your health: (Lawrence Robinson, Melinda Smith, M.A., and Jeanne Segal, Ph.D.)
Laughter relaxes the whole body. A good, hearty laugh relieves physical tension and stress, leaving your muscles relaxed for up to 45 minutes after.
Laughter boosts the immune system. Laughter decreases stress hormones and increases immune cells and infection-fighting antibodies, thus improving your resistance to disease.
Laughter triggers the release of endorphins, the body’s natural feel-good chemicals. Endorphins promote an overall sense of well-being and can even temporarily relieve pain.
Laughter protects the heart. Laughter improves the function of blood vessels and increases blood flow, which can help protect you against a heart attack and other cardiovascular problems.
Laughter burns calories. OK, so it’s no replacement for going to the gym, but one study found that laughing for 10 to 15 minutes a day can burn approximately 40 calories—which could be enough to lose three or four pounds over the course of a year, hey every pound counts!
Laughter lightens anger’s heavy load. Nothing diffuses anger and conflict faster than a shared laugh. Looking at the funny side can put problems into perspective and enable you to move on from confrontations without holding onto bitterness or resentment.
Laughter may even help you to live longer. A study in Norway found that people with a strong sense of humor outlived those who don’t laugh as much. The difference was particularly notable for those battling cancer.
Laughter is also good for your mental health. Now I don’t know about you, but I certainly could use a mental health boost from time to time…okay, daily but that might just be me. When we laugh, we feel good and research shows that those positive feelings stay with us even after we stop laughing. A healthy dose of humor helps us stay positive and see the brighter side of things even in the midst of struggles, disappointments and loss. In the most difficult of times, a little laugh can go a long way toward making us feel better. Did you know that laughter is actually contagious? When we hear laughter, it signals our brain and prepares us to smile and join in the fun.
Fun facts about laughter’s affect on mental health: ((Lawrence Robinson, Melinda Smith, M.A., and Jeanne Segal, Ph.D.)
Laughter stops distressing emotions. You can’t feel anxious, angry, or sad when you’re laughing...how amazing is that?
Laughter helps you relax and recharge. It reduces stress and increases energy, enabling you to stay focused and accomplish more.
Laughter shifts perspective, allowing you to see situations in a more realistic, less threatening way which can help you avoid feeling overwhelmed and diffuse conflict.
Laughter draws you closer to others, which can have a profound effect on all aspects of your mental and emotional health.
Okay, enough about the research! Now that we know how important laughter is for our relationship with our spouse, what can we do to bring more laughter? I read a lot of posts from women that are unhappy in life because their husband or boyfriend is living with paralysis and unfortunately, they are sad. They take out their sadness on their wife or girlfriend because let’s face it, we are the person closest to them and the one they feel the most vulnerable with. Unfortunately, that can mean they feel comfortable unleashing all their pent-up feelings of loss, sadness and hopelessness on us. But what if we tried to change that? What if we were the ones who started to smile at them even when we didn’t feel like it and certainly when they don’t deserve it? What if we laughed at a joke they told…even if it is just horrible? Forced laughter is still beneficial!! Let me say that again, even laughter that is not genuine is still good for you. Mind blowing right? Remember earlier when I said joy is a choice not a feeling? Sometimes, we have to dig down deep choose joy in our hearts that we may not be able to feel. Smiling, forcing laughter and choosing joy will go a long way towards helping our spouses feel joy as well.
There are many practical ways to add more laughter into your day. First, you have to choose to be intentional about making laughter a priority. My hubby and I try to watch something “light hearted” each night before bed together. Something that really makes us laugh. We have also created our own inside jokes, which is common I think for most married couples. But now some of our jokes are spun from his spinal cord injury and all the craziness that comes along with it. We are also both in some Facebook support groups, which sometimes offer some comic relief to the SCI life from people who “get it” because they are also living it.
Not too long ago I learned of a new term that would probably not float well in the able bodied community but anyone living the SCI life can most likely understand and laugh at it….wait for it….poo-nami! Like tsunami but less tsu and more pooh!! HAHAHAHAHA!!! Seriously, the first time I read that word I laughed out loud to myself. If that word doesn’t register with you in any way you are either not in the SCI world or you haven’t been in it long enough. But seriously, finding other spouses that are living similar lives and connecting with them, even if just through an online group, can be hugely therapeutic and a great source of encouragement and even laughter at times.
YouTube my friends, this is a magical place filled with silly videos that will just make you laugh. Here is a short list of some of my favorite YouTubers that are sure to make you laugh:
Just watching small bits of these clips as I searched for the links had me laughing…these guys are seriously funny and all of them are very different. I will also say they are all “clean” comedians and my tweens and teens enjoy all of these guys as well. Schedule in some time each day to watch a funny video or two with your spouse with the sole intention of laughing together.
The SCI life is tough, no doubt, and we all have hard days that hurt so deep we can’t possibly laugh even though we know it would actually be good for us. And that my friends, is completely okay. It’s okay to be down and sad for a day or two….just don’t stay down. Choose joy and choose to laugh so you can pull yourself out of those deep dark days and start to live again. There is hope and healing for our souls and laughter is a great way to get our hearts and minds to a place where we can receive that hope and find the healing we all need to Thrive with Paralysis.
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How to successfully Travel with paralysis
Travel with paralysis is something that many of us enjoyed before paralysis became part of our lives. I am excited to share with you that travel is still possible even after paralysis.
I don’t want to sugarcoat the truth, the first time you travel after an injury/illness that results in paralysis you will absolutely have challenges. It will be challenging, but in a good way. You will learn things you never knew you would need to learn, sometimes trial and error are the best teachers.
In this blog post I would like to share with you some of our travel experiences, things we have learned and what we do before we travel to make the experience mostly positive. Every level of paralysis is unique much like a fingerprint. I can tell you my husband is a C7 incomplete SCI but that doesn’t mean his ability is the same as another person with the same level of injury. Keeping that in mind, certain levels of paralysis require more or less preparation than what I will share, but in general, there are some smart ideas to help make your travel adventures a little easier.
When we travel for vacation or just a weekend getaway, we try to pick a place that is easily accessible for wheelchairs. We look at the weather for the area specifically at the time we plan to travel and try to find others who have traveled there to rate the accessibility. There are a few places online that you can find specific reviews for destinations. I also love to ask the people in my Facebook SCI Spouse/Caregiver support groups for information. I usually get at least a few people who have been where we are going with some helpful information.
Once we decide on the location and travel dates it is time to get some reservations booked. I start by searching out accommodations that offer wheelchair-accessible rooms. Here are some of the questions I ALWAYS ask (usually several different times, over the course of several different phone calls and always at least once with a manager.)
Is the shower a ROLL-IN shower? I am sure to explain that a bathroom with a tub that has grab bars is not helpful when your loved one is in a shower wheelchair that must roll all the way into the shower. We have been told by reservation agents several times that the room had a roll-in shower only to arrive and find out it did not.
Does the bed have a platform around it that prevents a wheelchair from getting close to the mattress? I have no idea why they put these in accessible rooms but they do, so asking ahead will at least help you plan for a trickier transfer. My hubby usually does the transfer from chair to bed himself at home, but if we know there is a platform, we can plan ahead and bring a slide board to make that easier.
Can a wheelchair fit under the sink in the bathroom? You would be amazed how many aren’t tall enough for my hubby to fit under with his 6’3” frame. This one is not a deal-breaker as we can work around it, but I just like to point out when they aren’t really ADA accessible so they are aware.
Once I have the room booked, with the name of a manager that I can call back later to confirm our reservation with, I start to look for flights. (Just be sure to follow up with the manager about a week or two before you travel to confirm they have the correct room reserved for you.)
We have flown Southwest many times and have had great flights each time. We usually book them online and then once we have our flight information, I call Southwest and tell them my husband is in a wheelchair and will require an aisle chair to get onto the airplane. They give you 2 free pieces of luggage and you can check “medical supplies” at no cost. I usually pack everything I need to take care of hubby’s SCI related needs in one bag so we can check it as “medical supplies”. We have a portable shower chair that has its own travel case so we can check that at no cost as well. They also allow each person a carry-on and personal item. Southwest allows you to “pre-board” so there is no rush of people to deal with and you can take your time to get comfortably seated. When we check-in at the gate desk, we always let them know he will need and isle chair which they can usually see in their notes on the computer but I always tell them just in case. They move us to the front of the preboarding line and we go on before anyone else…it is great!! And, when we are traveling with our 3 kids and my Mom, we all get to preboard together which is really awesome. Once we get to the end of the jetway, there is usually a team of 3 or 4 people ready to help him transfer into the aisle chair. This is a very narrow chair and getting hubby into it with his 6’3” legs is always kind of hilarious. (We have learned to laugh about a lot of things which is key in our book to Thriving with Paralysis!) Once he is in the aisle chair, they take his wheelchair and put it under the plane with the luggage and wheel him onto the plane and down the aisle. We then get to pick wherever we want to sit which is great. We always put his ROJO cushion from his wheelchair on his airplane seat to protect his skin.
How to Travel with paralysis
We flew Hawaiian airlines last Fall for a family vacation. What we didn’t know when booking our flights was how small the seats were compared to Southwest. Hubby is 6’3” and he fits pretty well in the economy seats on Southwest. We literally could not get him into the seat on Hawaiian because there wasn’t enough room for his legs! Thankfully they were able to find a seat in the next section up that was available and they didn’t charge us the $75 upgrade fee. However, this meant hubby was about 10 rows up and on the opposite aisle from me for the 5-hour flight. I had to walk up to the flight attendant’s area and back down the other aisle just to get to him to help him. Basically, it was horrible and made for a less than pleasant flight there and back. I share this to caution you that if you fly Hawaiian you might want to pay for the upgraded seats if your loved one is big and/or tall. Also, Hawaiian was the only airline that actually folded down his backrest to his wheelchair that is not meant to be folded down. They asked as they started to take it if they should fold it, we said absolutely not. They brought it to us when we landed in Oahu broken! Thankfully an airplane mechanic came to our rescue and he was able to “rig” it to work for the duration of our trip. By God’s grace, we had no issues while we were on vacation other than some squeaks and squeals. We were able to have our medical supply company that does all his wheelchair maintenance fix it once we were home. We have never had that happen on Southwest. Now I make sure to have a note attached to the backrest that says “Do Not Fold Down Back Rest”.
We are getting ready to fly on Alaskan Airlines next month so I will have to do a follow-up blog once we know how that works. We have not yet traveled out of the country, although we did just book a flight to Cabo San Lucas in March on Southwest so we will see how that goes as well and I will write about it in a part 2 travel blog post.
Getting through security is a fun experience (I hope you picked up on my sarcasm there). The first time we went through security I cried, not even joking. I had no idea they would have to feel every inch of my hubby’s body. It was much more emotional for me than it was for him, it didn’t seem to bother him at all. Over time, I have come to accept that is just what they have to do. The first time the TSA people were exceptionally rude and unkind which made it worse, I am sure than it should have been. Now I take all the bags through and just sit out of sight and wait for him to get done so I don’t have to experience it. Once you make it through security, check-in at your gate desk, remind them you need and isle chair if that is the case or any special assistance you will need.
Ground transportation once you arrive can be tricky as well. I always book our transportation before we travel that way we have no issues (well at least not in theory) when we arrive at our destination. We have used Super Shuttle, local shuttles, hotel shuttles, and private taxi services. We have had a much better experience with Super Shuttle than any of the others and we feel it is worth the price to travel in a vehicle that feels safe with drivers that clearly know how to secure wheelchairs. When we went to Hawaii, we had Super Shuttle pick us up from our home and get us to the airport and then bring us back home as well. It took all the stress away so we could just enjoy our trip from the very beginning to the very end. (No, I don’t get any kickbacks from Super Shuttle but I am always willing to share good and bad experiences to help others make decisions when they travel.)
Tours and excursions are another consideration to book ahead of time. If you are staying at a resort or hotel that has a concierge, I highly recommend calling them and having them help you plan your tours and excursions. They tend to be very helpful and they usually know a lot about the place you will be visiting so they can offer insight you might not find in an online search. They can also call around for wheelchair accommodations for you. We stayed at a Wyndham Resorts condo in Oahu and our concierge was invaluable in making plans from afar. He called every excursion I asked about to find out if they were wheelchair accessible or not. He helped me book an entire week of fun and took a lot of the stress out of planning for me.
Traveling after paralysis is completely possible. Be sure you plan ahead, make lots of phone calls and reconfirm all reservations before you actually leave on your trip, and don’t be afraid to ask for help. The travel/vacation industry businesses are very hospitable and they are truly there to help make your experience better. With careful planning, you can have a great vacation without allowing paralysis to keep you from your next great adventure.
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Why Spouse’s Need “Me Time”
Me Time for spouses
One of the most common things I hear from fellow spouses who are also caregivers in the paralysis world is they just can’t find any time for themselves. They all seem to love the idea of “me time” but feel the reality of it is just not possible. I would like to encourage you by saying IT IS POSSIBLE!!! You may need to start small and dream of greater things but you can absolutely find some time that is just for you.
Why is “me time” so important? When you have time away from your responsibilities as a spouse it gives you time to take a deep breath and focus on something that brings you joy. Spouses in general, but especially spouses of people living with paralysis, who are intentional about making time for themselves amidst their busy life tend to have more energy and are able to handle stress much better. In turn, this allows them to be a better spouse and even caregiver if they also fill that role.
Maybe as you are reading this you are nodding your head and saying, yes, someday I will be sure to start making time for myself a priority. The problem with that mindset is that “someday” never seems to get here and if it ever does, it is going to be a very busy day with all the other things you have vowed to do “someday”! It is so easy to find other things to do instead of taking even just 15 minutes a day for yourself. You must be intentional. Make a daily schedule, I encourage you to write it out hour by hour, and somewhere early in the day (like before lunch) block out AT LEAST 15 minutes for you. You can call it whatever you like, here are some of the fun names I have labeled it: “me time”, “sanity break”, “mental preservation time”, “ugly cry session” or “quiet time”.
Be sure this time is truly a break from your responsibilities. That means don’t do the laundry, make a grocery list or pay any bills. Find a quiet corner of your house or if that isn’t possible and weather permits, go outside and get some fresh air and soak in some Vitamin D. If neither of those options work, go sit in your car!! Seriously…it has heating and air conditioning so you can always make the temperature just right. Tell your spouse where you are going and why and ask that they only call or text you if there is a true emergency that can’t wait 15 minutes.
Ahhhhhh…..quiet! Sometimes just finding a quiet and peaceful place to get away from everything else can make all the difference in the rest of your day. During this break do something that brings you peace and joy. I like to read my Bible devotion while enjoying a cup of coffee or listen to worship music while working on a puzzle. Maybe you enjoy a cup of tea in a fancy tea cup and a great book. If you enjoy journaling, this is a great time to write down what is on your heart and mind as I have found writing can be very therapeutic.
Once you have your daily “me time” figured out, dream bigger and try to find time to get away from your home once a week for something indulgent. That could look like so many different things. Maybe for you it is going to a place that makes you feel relaxed and peaceful. We live in Southern California so sometimes for me this place is the ocean. There is something so calming about the ocean for me. I put on some worship music and just drink in the smell, sounds, and feels of the ocean. I might listen to my Bible app or an audiobook while looking out at the calming waves. Maybe you enjoy getting a pedicure or a massage. Maybe it’s just wandering around the mall or taking a walk around your favorite outdoor area.
Since I know first hand that finances can be tough for a lot of people in the paralysis world, consider asking friends and family for birthday and Christmas gifts that you can use during your alone time!! Sometimes people struggle with finding just the right gift and sometimes we struggle with being upfront about things we would like because we don’t want to sound greedy. But trust me when I say, if someone is asking what you would like, they truly want to know so they can bless you with a gift they know you will enjoy and not one you will have to return later. This is an easy way to allow others to help you and the amazing thing is they will feel blessed as well. So, ask for a gift certificate to your favorite nail salon, a local masseuse, or maybe a gift card to your favorite book store or coffee house.
Being the spouse to someone living with paralysis can look very different for each couple as injury levels and abilities vary widely. For those of you that are married to someone with a high level of paralysis, you might need to enlist outside help to care for your loved one so you can getaway. Discuss with your loved one who they would feel comfortable with and teach that person(s) what they need to do so you can step out for an hour or two once a week. I know many of us are blessed with a great group of friends and/or family who are willing to help if we just ask. However, I know there are some spouses that don’t have that option due to location or difficult relationships. I would encourage you to seek out a local church if you don’t have one already. Our church is part of the Calvary Chapel movement. I can’t say enough good things about the love and support we received from our church family from day one of my husband’s injury. We were blessed with meals, visits in the very dark and lonely ICU, financial blessings, prayers, and encouragement for our entire family. To this day, I can put out a request for help within our church family and I will have multiple offers within an hour or so from people who truly love us and want to help with no strings attached. There are other resources that you can look into for adult care day programs. Here are a few links that might help you in your search for support, adult care, and options to assist in paying for care:
I am challenging you to start finding “me time” today. Sit down and write out your schedule hour by hour on a lined piece of paper (I like to use a composition book) and be sure to get at least 15 minutes written down in ink and start thinking of what you would enjoy doing most in that 15 minutes. If you can do this every day…that will give you at least 1 hour and 45 minutes a week all to yourself.
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