Finding the Path Through and Out of the Forest

I often find myself using analogies about finding a path when comforting my husband during the times when he is unable to see past the pain and challenges of the moment. His healing process after spinal cord injury has been slow and the pain he feels on a daily basis builds to a threshold at times that blocks his ability to see a future worth living. During these times I try not to say too much focusing more on providing my gentle touch and undivided attention. The few words I do offer though usually say something to the effect of there being a path forward from this point and that I will be right there with him navigating that path. I see this much like being in the thick of the forest following a trail you know eventually leads to a clearing with wide open views of expansive beauty and endless opportunities for a direction forward. 

Interestingly, we have lived in the middle of the forest for the past few years and in the next couple weeks will be moving to a property on a clearing with wide open views out of the forest. I can't help but think of the symbolism as we get set to make this change. I have dearly loved our time here in the woods surrounded by bird songs and the seclusion and protection of the trees. There is great beauty in the forest but it is an easy place to get stuck. The trail is easily covered, the nights are darker, and the days are colder. Trying to find a path that is covered when it is cold and dark can be a discouraging experience. I believe to find a way out one must ignite a light from within. By creating a clear vision of what you want the path to look like and believing it is there the path will then appear. 

Staying Balanced as both Caregiver and Spouse

Good morning and happy mother's day! Thank you to all the mother's out there who give so much of themselves to make sure their children feel safe, loved, and supported. 

Today as I think about my wish for all mother's to have balance in their lives as they juggle the responsibilities of raising a family while keeping in touch with their personal goals and desires, I want to expand this wish to individuals who are the caregivers for their loved ones. I believe the unconditional love and support given by a person providing care for a loved one has many similarities of being a parent. However, the lines are quite different and navigating that path in a healthy way is necessary for the overall health of the relationship.

One huge difference to recognize is that your loved one is not your child and although they have personal needs they need your help with they need to be a partner in the process. Of course it is impossible for me to make a blanket statement here that applies to everyone. There will be individuals whose loved one has declined mental abilities and certain decisions will need to be made for those individuals. I more aim this post at individuals whose spouses mental facilities are completely in tact but their bodies are limited. I think a lot about why my husband and I have been so able to successfully move forward since his accident and the one main factor I see is we communicate clearly with each other. Neither one of us let pent up anger or negative emotion hide out inside of us where it can turn into resentment and rot our relationship. This is not to say we have not experienced negative emotion or anger since the accident. Coming out of this first year post accident has been quite the emotional roller coaster! We have yelled about each other, yelled about the accident, yelled about the truck that just left my husband for dead, yelled about the doctor's, and cried about all those things too, many times. The key for us is that we have been really good at not attacking each other personally and when we do we talk about it once we cool down. We have both kept it clear in our understanding that what we are going through is hard but we love each other tremendously and to move forward we need to be on each others side.

This commitment to keeping communication open, honest, sincere, and empathetic I believe is a major contributor to how I have been able to stay balanced. It is the foundation that allows me to build any structures I need with great function and stability. There are plenty of tricks I am learning about the physical act of caregiving that are helping me become more competent and efficient along the way which are also important. However, I strongly believe that without a healthy and open line of communication the lines between spouse and caregiver will blur and the relationship will suffer. If you think your relationship has come out of balance consider evaluating how well you think you are openly communicating to each other. If you find inside yourself there are resentments or other negative emotions then it is time to talk and problem solve with your loved one. If starting a new way of communicating seems challenging then give some structure to your communications. Maybe do a morning or evening check-in where you set aside 20 minutes with no distractions to express how you feel and what you need to help you feel better. By putting your mind and your heart together it is possible to solve any problem or improve any situation. As always I wish you all the best and send love. Aloha! 

Practical Considerations for Life at Home after Spinal Cord Injury

Good morning great world! Today I have many thoughts about what makes things more functional at home when someone in the house is wheelchair bound and has limited mobility due to a spinal cord injury. You see, this week is moving week and function is the name of the game. One of the first items that came through and has performed like a multitasking life saver is our 4ft portable ramp that we purchased from amazon. It is made of aluminum, folds in half, and has a handle for easy transport. We needed a short ramp to get down a couple steps to our bedroom and this ramp worked out to be a perfect solution (hint: put a throw carpet down under the bottom so it doesn't cut into hardwood floor underneath). This ramp became so helpful because with the move we need the ramp that comes into the front of our current house to be installed into the front door of the new house causing a need for a short-term ramp solution to get out of the current house. With the help of our handy drill I can unscrew the ramp, pull it up and carry it to the front lanai and screw it back down out front. It takes a total of 2 minutes. 

Speaking of our handy drill, I would say tools in general have been an important part of keeping things functioning for my husband and our home. Allen wrenches of course are a must have. The wheelchair is almost exclusively allen wrench assembled as is our bathroom chair. However, I have found myself grateful time and time again that my husband had compiled us such a complete tool box because there always seems to be something that needs a little tending to. At a minimum I would suggest: Allen wrenches, a socket set, a drill, a hammer, screwdrivers both Philips and flat head, a tape measure, lubricant (like tri-flow or WD40), and some shop towels for cleaning things up. 

Ah yes, cleaning things up.... Let's keep this one simple. Buy the big package of wash cloths at COSTCO as well as the big box of bleach. Remember bleach will ruin your clothes and change before you clean with it. Keeping plenty of small trash bags on hand is a good idea too. 

As far as ideas for setting up for the day when my husband will be alone, we have found some tricks to keep his needs met. We place on the kitchen island which he can pull right up to and reach the items he will need for the day. This includes several cups of water (hard plastic cups that are lightweight), snacks he can open on his own such as: Smart food popcorn, almonds in a can, and other lightweight non-refrigerated snack foods, a paper plate to put food on, and anything else that comes up that he wants access to in a day. On the refrigerator we placed a strap looped around the handle so he can open the door and grab tupperwares containing meals we already prepared. On another lower wooden stand, we have a tall coffee push thermos container like the kind you see at meetings. My husband can roll up to the side of it, place his coffee mug (light weight with a nice long handle his thumb can fit under) on the stand and fill his cup by pushing the lever. He also has a camel pack strapped to the wheelchair so he has plenty of access to water all day. Having multiple options for surface tops that he can roll up to is key. We also use an adjustable desk with a laptop station. By using a trackball mouse and a program called "Dragon Naturally Speaking" he is able to navigate the computer unassisted. The final item I will speak to right now is his lap tray. It is simply a tray for placing your lap top on but used with a rubber mat on top as a lap tray is super helpful.

Well, I hope this post puts some good ideas into the collective. If you have amazing idea's for making the home more wheelchair friendly please leave a comment and do share! As for now..... I I'm off to have a little chat with a rooster.... Aloha! 

Progressing after Spinal Cord Injury

Aloha and Good Morning!

Thinking about what to write I have been wracking my brain to remember what I was looking for early on after my husbands accident when I was turning to the web. Reflecting now I think I wanted to understand how people progress especially after cervical injuries. I wanted to know people do progress even when they start off so horribly broken and unable to do anything. 

A week and a half from now will mark one year since my husbands accident. Compared to being on a ventilator with tubes coming out of every direction to keep him alive he has made tremendous progress. What I have come to understand from my husbands cervical injury is that progress occurs but is easy to take for granted and not see.

It becomes glaringly apparent after spinal cord injury all the automated processes we take for granted every single day. From the obvious such as doing our own personal care to the simple pleasures such as getting up to see the sun rise or grabbing a snack from the fridge and warming it up to eat. It is in the simple acts where I see the most progress with my husband. The funny thing is that once they become automated again they become easy to not think about and realize how such a short time ago they seemed an impossibility.

There are so many things my husband still can not do which can easily take all the attention as he adjusts and learns to move into his new body.  While it is completely understandable and natural for him to go to the despairing thoughts of all he can not do, It takes him far away from recognizing the things he can do. These are tough times to move through on the journey and I am always grateful when he moves through such thoughts and turns his attention to what he is grateful for. I definitely see that his pain lessens when he is able to change his focus. 

Some examples of things he can do that have become automated are things like: Swatting at a bug flying by, scratching an itch at a specific spot on his face or head, or coughing up fluid if it goes down the wrong pipe. 

He has made progress in abilities he has worked hard to develop like feeding himself, holding drinks and drinking, brushing his teeth, wheeling around the house, doing exercises, grabbing items with his tenodesis, doing weight shifts, using the computer, etc.

My hope is to illustrate that while progress happens, at first it is the littlest things which I try to remind myself not to take for granted. When I think about this first year, I think about building a house and the importance of building a strong foundation. I have no doubt that my husband will continue to gain skills and learn how to become more independent as time moves forward. His body is his home and as he rebuilds atop this strong foundation, I believe anything is possible. 

As always, to anyone on this journey I send my love and prayers your way! Be kind to yourselves and have a great week! 

Remembering the Importance of Self-Care

Aloha world and good morning! Lately it seems I have heard from a few different sources how unlikely it is for a relationship to stay in tact after one person suffers a spinal cord injury. Many thoughts have crossed my mind since my husband was hurt but one thought that has not crossed my mind is leaving him. This has led me to reflect on what it is about our relationship that keeps us going forward together. 

First and foremost I believe I must credit my dedication to doing self-care. I am fortunate that self-care has long been a priority in my life so that even before my husbands accident I had already established self-care routines to maintain my emotional and mental well being. Of course times are different now and I have had to modify those routines to adapt to our new lifestyle to fit in my routines. While I believe it helped to have a groundwork to build from, I do not think anyone who did not have such established routines has any less accessibility to implementing such routines at any given point into their lives. The thing about self-care is it is more about making a choice than any other factor. I have heard people offer many reasons why they can not do self-care in my work in the mental health field. Most often people speak of not having the time or money. Usually though I find if I dig deep enough it tends to boil down to people don't feel they deserve to take the time for themselves or don't know how. 

This is where perception comes into play. The thing about our beliefs is that we get caught up thinking they are absolute and true but we are never able to get outside of ourselves and be truly objective. We see the world through the meaning we give it with our perception of the information given us. Perception is the sum total of how we choose to make meaning of our beliefs and information (events, circumstances, etc.) that present in our lives. There is a great quote by Wayne Dyer that speaks to this idea that states: "Change the way you look at things and the things you look at change". In other words we have the choice at any time to shift our thinking and see things a different or new way. 

This comes into play hugely in a relationship after spinal cord injury (actually I would say this is true for all relationships:) However, after someone in the relationship sustains a spinal cord injury obstacles and challenges fire rapidly. Making conscious effort to mind your thoughts and make thoughtful choices to perceive those challenges in a manner that serves your growth in the best possible way is critical to staying emotionally and mentally healthy.

You may be asking, so how do I learn to make these changes and get to this place of emotional and mental well being? Ah, and now I get to make the full circle..... The magic happens by taking the time to do self-care. 

Finding the New Normal after Spinal Cord Injury

Good morning beautiful people of the world! Yesterday I took a ride with my husband down to the road in town that drives next to the ocean. It used to be we would take our bikes down to this road and bike along pulling over now and again to watch and listen to the waves. We parked the van and as we sat there watching and listening to the waves, I was thinking about how some things have not changed at all since my husbands accident. We still love sitting in nature talking with each other about our hopes, dreams, and love for each other. We are still the same adventurous people with the same drive to seek out exciting and new experiences to enrich our lives. My husband made a comment about worrying of life being too boring now with the limitations of having less mobility. My thoughts were much to the contrary though, my thought was that now things will be even more adventurist because we will have to be so much more creative in all that we do.

At this point in the journey I am realizing that while we absolutely need to create a "new normal" and while in a sense, it is true nothing is the same, at the same time there are activities that we used to enjoy that are still accessible to us. What I notice about my husband when we go out and do these activities is that his mood becomes more peaceful and he is more able to be in the moment and distracted from thinking about his pain or disability. The enormity of adjusting to changes after spinal cord injury can be consuming and I have watched my husband cycle into phases that are deep and dark and hard to climb out from. I am seeing more now than ever the necessity of bridging the gap between what we used to love to do and what we can no longer do by figuring what activities can be done with adaptation and getting out and doing them. The trick I believe is in keeping it simple. If you love nature like we do, then go sit somewhere pretty and be in nature. If you are a city dweller and love watching people, go to a coffee shop and watch the drama unfold. The point is to find something that brings enjoyment and making a point to go do it, even if only for 20 minutes it is good for the soul. My wish for all this week is that you get out have some fun and experience a sense of peace inside. Aloha!  

The Rooster Crows and the Day Begins

Aloha and Good Morning!

Previously I wrote about the very beginning of the journey with my husband after his spinal cord injury. Today, I would like to fast forward 10 months as I sit out on my lanai listening to our new neighbor Mr greet the day rooster. Yes, the days of sleeping late on a lazy Sunday relishing in the freshly cleaned sheets have passed. However, maybe not for the reasons you may think. 

I read a post early on where a lady described her marriage to her husband who was paralyzed as including 3 entities: Herself, her husband, and the disability. She explained that the disability has needs just as well as husband and wife that demand a certain amount of attention. Her point being that everyone in the marriage needs their needs met so while it is necessary to give the disability attention, equally important is that both husband and wife meet their needs a couple as well. I have found this to be so true. There are routines that need to be followed and our wake up time is more scheduled now, the disability definitely calls for its due attention. However, compartmentalizing in this way has helped me remember that we are a couple who are very much in love and it feels great to nurture that love. 

So back to why I am sitting here listening to the rooster crow, and the birds starting the symphony of their morning songs, well by choice of course! Did I ever think I would wake up at 5:00am on a Sunday (and Saturday too) on my days off? No Way!!! What I have found however is  that this time of day is absolutely inspirational. As I continue to write blogs I hope to find ways to share how in my experience of adjusting to life after spinal cord injury I have found ways to be calm, peaceful, joyful, hopeful, and loving. One hugely important contributing factor is this time I have carved for myself at the brink of dawn. Starting everyday grounded and centered is the best thing I can do to help set the foundation for the day. 

As always, to anyone struggling to move forward after they or a loved on have suffered a spinal cord injury, I send my love and prayers. Aloha!

The Journey Forward: A Wives Tale

The initial shock of learning that my husband in one moment went from being the most capable man I had ever met to a quadriplegic absolutely took my breath away. Simultaneously time seemed to stop and move impossibly fast.  In our case since we live in rural Hawaii, my husband had to be flown to another island to receive care at a trauma 1 hospital with the ability to provide the appropriate level of care for his level of injury. Suddenly amidst the immobilizing fears and uncertainties I had to jump to action and handle a slew of logistical needs. The accident happened about 1/4 mile from our home and I was able to go to the scene of the accident and be with my husband until the paramedic's arrived. I then went to the hospital and stayed with my husband for 5 hours until they could stabilize him enough and arrange a medical transport to the island of Oahu. Unfortunately the night of the accident it was raining so hard they were unable to send the flight for life helicopter so we had to wait for a plane to become available. I had spoken to husband just 15 minutes before the accident. He was coming home from work while I was making dinner. As he came around the last turn before our driveway, a truck was coming down the hill cutting the corner and in his lane. My husband swerved and given the torrential rains went into a hydroplane, crashed into several trees until his impact on the final tree was so hard it split his car open, ejecting him 15 feet.

Those first few weeks were surreal and to anyone in that place I send my love and prayers. I will provide a "survival guide" based on my experience and hope it helps anyone feeling stuck and unable to see the path forward.

Tips for Starting the Journey Forward after SCI

• Delegate roles to key players in your family and friendship circles to communicate about the situation. I chose one person from my family, one from my husbands, one person from my husbands work, one person from my work, and one friend who was willing to communicate to all the others. 
• Take a walk outside the hospital everyday. Connecting with nature (even in a city there is still the sun and moon above) connects you to your source of pure positive energy within.
• Touch your spouse often. Rub your fingers through their hair, kiss their forehead, hold their hand, ask the hospital staff any stretches you can do.
• Talk to your spouse as tender and lovingly as you can muster. Do not talk to them about your fears, worries, or stress. I used guided meditation techniques with my husband. I often referred to the light and guiding him to go to and be "in the light" 
• Remember to eat, the healthier the better
• Do some research about the rehabilitation hospital that would best suit your needs and be accepted by your insurance. We went to CRAIG Hospital in Colorado. They were fantastic and I would highly recommend them. CRAIG provided free housing for me while my husband was in their care which was huge.
• Talk to your work about what arrangements can be made to allow you to take leave and be with your husband while in rehabilitation. Any time you are able to spend at the rehabilitation hospital will be invaluable once you return home and take a more primary role in your husbands care. This time also helps with the transition by exposing you to many other individuals in the same boat who are successfully moving forward.
• Keep your interactions with others to the people or sources that uplift you. This is no time to let in the negative influences of others. Be wary of folks who only want to stick in the pity and hardship. This can be a trap and impede you ability to move forward. There will likely be well meaning individuals who want to "help you vent" that only help keep you stuck in a low place. 
• Do seek out the support of uplifting sources of help and people. I watch a ton of youtube videos. I especially have found immense support from: Wayne Dyer, Abraham Hicks, Joe Dispenza, and Bruce Lipton. Feeding your soul is as important as remembering to feed your body.
• Be your own cheerleader. Pay attention to your self talk and say to yourself statements that empower you such as: " I can handle this", "Everything will be okay", "One day at a time", "I send love and healing to all of us".... etc.

This may well be the hardest thing you go through in this life. It seemed a favorite phrase in rehab was "it's a marathon not a race". This is so true and it really does happen one step at a time. I wish anyone on this journey much strength and hope this post helps. Take care!

 

Coming Back to the Blog after Spinal Cord Injury

Aloha vast world of the internet! It's been quite some time since I found it in myself to pursue this blog thing. Last spring on March 7th my life changed in the most unexpected way. My husband was in a terrible accident, broke his neck and is now paralyzed from the chest down. Since that day life has become quite the journey and so many times I wanted to write about it but finding the time or motivation has been challenging. I have decided to take a different approach so I can write without feeling so much pressure. I've decided to write short blogs when I have time to share my experience. One thing I have done nonstop since the accident is look to the internet for other's experiences moving forward after spinal cord injury, especially wives experiences for some sort of soothing and reassurance everything is going to be okay. Now that I have made it to a point where things feel manageable and I do feel that everything will be okay, I want to add to the available content on the web that helps and hopefully reassures others. So for my first blog back I will simply say to those who are still lost and scared and unsure of the future, there is a way forward and it is possible for things to once again be okay! Yes, it will likely be an emotional roller coaster and some days will be hard (scary, painful, sad, frustrating...). There is strength to be found in the individual moments and there will be good ones. I send much love and giant embracing hugs to anyone going through this. Stay tuned for my future blogs for information on how I have found a way forward that has allowed me to find peace inside the storm.