Joy in the journey

I have spent the last several months explaining some of the things I have lived through in the last ten years.  It hasn't been easy. Sometimes I laugh and sometimes I cry.  Sometimes I am happy and some times I am fed up with it all.  Sometimes I just want to run away and go to the beach.  I really want to run away and go be my parent's little girl again, but I probably won't get that for a very long time.  The beach will have to do for now.  I get tired of carrying a load that is too heavy for me to carry.  I get discouraged. Interestingly though, I have never thought "Why me?" and really meant it.  My friend John told me that he sees me as "pragmatic."  When something comes along, the only thing that makes sense to me is to face it and deal with it.  That is what I have tried to do with my situation.  I haven't done everything right, in fact, I've done almost everything wrong, but I've done the best I can with the cards that have been dealt to me.  I have learned from my mistakes, but I can't change them.  I don't dwell on them or wonder how life would be different if I did this thing different or that thing different. Life is what it is. What I might be able to do is pass some of the things I've learned along to someone who can use them. Then maybe there was a purpose to it beyond what it has taught me and how it has changed me.

Just like you, I live in a world that is complicated. It's not all doom and gloom, but it isn't all roses either. Some days life sucks. Somedays it like heaven on earth. Most days are in between. It's life.

In spite of all the help that I received in 2008-2010, I find myself very alone dealing with the day to day realities of my situation. I don't have family around anymore.  I get little support these days other than a listening ear every once in awhile from a friend. I am grateful for my friends.  I am grateful for my faith, which sustains me through the hardest times.  I know that my Savior, Jesus Christ understands and goes through it with me. Heaven only knows how I would have been able to endure without that in my life. My children and grandchildren bring me joy and help me to realize that when all is said and done, I have a lifetime of memories to create with them. So, my future is in them. It is making great memories with those wonderful people that are my descendants. It is showing them that although life isn't what we expected, that we can find joy in the journey.

That reminds me of a quote: "Life is just like an old time rail journey...delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling burts of speed.  The trick is to thank the Lord for letting you have the ride."   --President Gordon B. Hinckley quoting Jenkin Lloyd Jones.

Thanks for reading.  If you have stuck with me since the initial story of the accident, I have to say, I am impressed.  I don't know that I would have the patience to read something like this from someone else.  It is long, and complicated, so thank you for listening, even if you have only read a few posts. If by chance you think that I could give advice to someone who is going through something like we have been through, direct them to me.  I would love to listen and I might even be able to help in some small way.  I'll probably write more post occasionally, but they won't be everyday anymore, and they probably won't be about the accident anymore.

Find joy in your journey.  

Getting on with Life

At some point you have to get on with your life. The question is how do you do that?  Life will never be the same again.  You know it and everyone else knows it.

The truth is, things will probably never be the way they were before the accident.  The best thing to do is admit that and accept it. Things will not be the same, but that doesn't mean that things will not be good.

For awhile I would get asked, "When can Richard go back to work?"  The short answer is "Never."  He can never do what he studied years to do.  He can never have the kind of job he used to have.  He can never make the kind of money that he used to make. Ever.

The accident happened right after Richard's 50th birthday and it has now been almost 10 years since then.  He wanted to retire somewhat early, but we surely didn't expect it to be that early!

Getting on with your life in these circumstances means that you start living your new reality.  The new reality may be that you can't do that job anymore.  You may have to find a new job.  The dynamics of your relationships will be different.  You may not be able to do things that you used to do for recreation, but there are still things you CAN  do, and you SHOULD do them. The truth is that you can't go back to life the way it used to be, but you can create a wonderful life under the present circumstances. Men often get their self-worth through their jobs. It is hard for them to lose that, especially when you had a job like Richard's job. It was unique, important, and was of benefit to our country. He was proud of his job, and he had the right to be. It is hard to have that taken away so abruptly.   But the truth is, everyone is more than what they do or where they work.

We went on a cruise with Richard in a wheelchair, and I have to tell you, the handicapped cabins on Disney's cruise ships are to die for! (See pictures!) We would have never seen that and experienced it if it were not for this situation. Richard would have never had the opportunity to be Santa if it were not for our situation. The positive things include:

• the ability to have the best parking in the place, 
• we are often seated first and in the best seats at events, 
• Richard doesn't have to deal with workplace drama anymore, 
• we get preferential seating on an airplane and get to pre-board, 
• we get to go to the head of the line in Nevada for government services like the DMV, 
• we also have a golden access card to get in free to all the National Parks and any affliated parks forever. 
• finding new passions that you didn't have time to discover before. 

There are benefits.


The hardest thing is to stop talking about it. Richard loves to talk about it, and could go on for hours, but most of us have heard it all by now.  If you want to know, ask.  If you don't want to know, tell us. It's okay if you don't want to hear about it.

Mostly laugh, love, and enjoy the times you have together, because you almost didnt' have them at all.  Do the things that you have wanted to do but have kept putting off for one reason or another. This is the beginning of the rest of your life.  What are you going to do with it?

This is our cabin.  It bascially had two rooms and a bathroom as big as one of them.  

And this is our deck - yes, the whole thing belonged to us.  It was our private deck!  

Summary of advice to young people

When we were first married, Richard was a bank teller and I was a full-time student.  I worked part-time at the purchasing department of Brigham Young University, where I attended school.  We didn't have much.  Eventually I had to quit my part-time job and student teach.  Rich's hours were cut back at his job, so he was working only part-time and trying to support us.  It was rough.  Before we were married though, he purchased a life insurance policy so during those most difficult times, we still had to pay our life insurance premiums.  They were due every six months as I recall, and for the month that they were due, we had to go without food in order to pay that life insurance premium.  I thought we were crazy for doing so, but it was the grown-up thing to do, so we did it. Fortunately for us, we had a little food storage, which sustained us.

Paying that life insurance was a huge sacrifce when we were first married.  There were not social programs like there are now, or we didn't apply for them.  In any case, we didn't receive assistance from the government. I actually talked to Richard about getting assistance for our heat bills in the winter and he said that his boss would have to fill out paperwork to verify his income, and he was not going to do that. He didn't want his boss to know how much we were struggling. So, we made it without the help.  I bring this up only for one reason.  People say they cannot afford insurance. We couldn't afford insurance, but we paid for it anyway.  It is part of being an adult.

Life went on for us and eventually Richard became an engineer and had a good job.  We purchased a significant amount of life insurance as well as accidental death and dismemberment insurance, disability insurance (short term and long term), medical insurance, vision insurance, dental insurance, etc. We also put money into investments for retirement.  If you get it when you get the job, you don't notice it gone from your paycheck.

Get an education and/or trade early in your lives so that you are able to support yourselves. Don't feel you can rely on social programs.  They come and go with political winds.  You are the one that is responsible to provide for you, no one else. My best advice is to have at least two different careers or skills that you can use to provide for you in case for some reason, one of them is not possible.  I will write a post about this at a future time.

Stay out of debt. Don't get roped into monthly payments that you cannot get out of.  You may regret it if you end up without a job.  All of those nice things to have are not worth you loosing everything.

Don't go on trips you cannot pay cash for. Don't spend future money on anything. Stay out of debt.

Buy the insurance. Buy life insurance so your family doesn't have to pay to bury you, and if you are a breadwinner, your spouse will not be destitute.  Buy health insurance so if you were to get into a tragic situation, you don't go bankrupt.  Buy income insurance.  Buy disability insurance.  Buy accidental death and dismemberment insurance.  Buy cancer insurance. Of course, auto insurance is required by law, so that is a given.  The cost of these insurances are minimal, and the benefits are enormous.  Especially life insurance.  Everyone dies.

Go to an attorney and get wills and other important legal paperwork in place.  Make sure that you are medical power of attorney for your spouse, and that they are for you.

Put part of your salary into a retirement account every paycheck.  The more you put in, the better off you will be.  If your employer matches what you put in to a certain percentage, put as much into that account as you can, the max that they will match if possible. Don't count on Social Security to support you through your retirement, because it may not be there. What then?

One insurance that we didn't have that I wish we would have is supplemental insurance, like AFLAC.  It pays you for the days in the hospital over and above any other insurance that you have.  It would have been a life saver for us.

I know that my situation is not typical, but it is reality.  We never know how life is going to turn out.  I hate insurance companies.  I hate dealing with them and arguing with them, but I would not ever like to do without them.  If you have questions about how to save money, I recommend Dave Ramsey's books.  I wish I would have found them when I was young.  We haven't done too bad, but we could have done better.  You can always do better.

Think like an adult, because you are one.

My advice to those who might be going through a similar experience

Picture by Sold in a Snap Photography - Danielle Fleming

I have experienced a lot and learned more than I have cared to through this experience.  These are not things that I wish anyone would go through, but the fact is, people are going to be going through them and oh, how I wish I could have gotten some advice from someone who had been there before me!

Here are some things I have learned:

1. One of the first things you need to do is complete "Family Medical Leave Act" paperwork from your job.  You will miss a lot of work, and this will protect your job. 
2. Don't assume that all medical professionals have your family's best interest at heart.  
3. Make sure that any medical professional that touches your family member have seen their medical records and x-rays.  Damage can be done if they have not. 
4. When things get tough, leave the hospital.  It's okay if you leave and go somewhere for awhile. (As long as you are the family member, and not the patient!)
5. Don't worry about what people think about how you are handling everything.  Instead, just do the best you can.
6. Show appreciation for those that offer you help.
7. Accept help from people for things that you are unable to do on your own.
8. Be honest with people when you explain why you are late with your payments or miss your appointments.  People are pretty compassionate when they know the reasons.  
9. Ask for help from people who say, "Let me know if you need anything."  There will be a lot of them.  They want to help, but aren't sure how.  Give them a specific way that they can help.  This is even something that one of your friends could coordinate for you.  
10. Count your blessings.  Things could always be worse.  If you don't believe it, visit the rooms of some of the other patients.  Richard was the most critical, but by looking around, I could see people who had spinal cord injuries, and he didn't have those, so I gave thanks that he didn't have any spinal cord injuries.  
11. Ask questions and take notes when you talk to the doctor.  You won't remember if you don't. (Now you can actually record the conversation on your phone.  It's not a bad idea!) 
12. The doctors may tell you that they will do some other procedure at a later time, and then they don't.  Ask why.  Show them your notes (or audio) that prove what they said.  Hold them accountable.  
13. Make sure that medical professionals are using proper sanitation procedures and if they are not, stop them and ask for them to.  You will be able to tell because in the more serious deparments of the hospital, they are more careful and as you move down in care, they become lazy.  Don't let that happen.  
14. Be prayerful about life and death decisions.  The Lord does answer prayers concerning these things.  
15. Deny consent if you feel that things are not being done correctly.  They cannot proceed without your consent.
16. If insurance companies are not responsive to your needs, call the state insurance commission.  They will straighten up real fast!  
17. Take food to your family member if the food is not edible.  
18. If an extremity is crushed in the accident, and it swells, have the doctors split the skin.  This will eliminate compartment syndrome and my save that extremity from being amputated or non-functional.  
19. Find the EMT that was a first reponder and let them know how it turned out.  They rarely get to know that information.
20. Rely on your faith, and make no excuses for doing so.  That faith will sustain you.
21. If your family member has a head injury and is unconscious, ask to receive the medication that will help them not lose their eyesight.  
22. Don't be too concerned if your loved one says strange things or experiences paranoia while on major meds.  Those things will go away once the meds are reduced.
23. Have your loved one get off of pain meds as soon as possible.
24. Review your insurance policies, even ones that you don't think will have benefits for you.  They might.  
25. Sit in on OT and PT visits.  If they need to be more aggressive, tell them so.  If they need to hold back a little, tell them that too.  
26. When you make an appointment with Social Security about disability benefits, make sure that you have all the documentation that you need with you.  You don't want to have to do that more than once!  
27. Find the best doctors and question the use of the doctors and facilities that are chosen for you.  
28. Question any facility that the insurance company chooses.  Check them out before your loved one goes there.  If you don't have time for that, it is something that a friend, family member, or co-worker can help you with.  
29. Find a trusted counselor and don't be afraid to ask for professional help to handle everything.  It is over-whelming.  
30. Make changes in your life that are best for your new circumstances.  You may need to be closer to family members or relocate due to to climate or altitude issues. Do what is best for your family with no guilt. 
31. When you can't find solutions to a medical problem, it may take years to find the answer.  Pursue every avenue and don't give up hope when you find a dead end.  
32. Try to help your family member set new goals, find new purpose in their life, and look toward the future.  It will help with depression.
33. Try and be there for major successes such as walking for the first time after the accident.  
34. Once they can, play games, read stories, do things fun together that will give you things to help bond you and give you things to talk about.  It will lift everyone's spirits.
35. Don't close the door on legal action if necessary, but don't pursue legal action when there are people who simply make mistakes, especially if those people are your friends.  
36. Don't be surprised if some medical conditions don't show up for years.  
37. Laugh at your situation.  There are some funny things about it!  
38. Embrace what you have learned through the experiences.  Those things make us more compassionate, loving, and better people.  
39. Find a way to celebrate your successes and make opportunities that may never come again.  Tomorrows are not guaranteed. 
40. Advocate for your loved one!  No one else is going to do it.  It's up to you!  
41. Tell your neighbors that you are coming home with someone who has been hospitalized for months because they need to be more considerate of normal neighborhood noises such as dogs barking at 6am.  
42. Be a source of optimism for people who are going through similar cirucumstances.  I have seens so many that have totally given up hope.  Give hope away freely.  Miracles happen everyday.  Sometimes we need to be reminded of that.  
43. Write down the events of the day at the end of each day.  You will realize how much your have accomplished, and it will be a great record for you to answer questions later about what happened when.  
44. Know that I have been there before you and I believe in your ability to triumph over this adversity in your life.  There are people who understand.  Reach out to them.  
45. Do things that bring you joy.  They may be little things, but you have to do fun things just to keep your sanity.  

PTSD

When most people think about post traumatic stress, they usually think about military veterans who have served in horrific circumstances.  I do not want to belittle their experiences in any way.  But, we must also acknowledge that many people who never served in the military still have experienced things that cause post traumatic stress.

I have mentioned before that Richard has no memory of the accident itself or anything after the accident until about two months later.  He has pieced together a "reality" that may be very far from what actually happened.  We have no way of knowing.  We do know that he has a tendency to "fill in the blanks" for himself.  I am told that people who suffered severe trauma, especially with a brain injury, often suffer from PTSD.  I am also told that there are psychotherapies and drug therapies that can help in these situations.  I have never found someone who could help us. I have honestly been to many, many doctors and specialists and no one has EVER had an answer to our issues.  I am not sure if it is because there are so many issues that it is hard to know where to start, or if there are just no options.  I doubt that there are no options, but at this point, I am frustrated with trying find help.

Richard's PTSD is mostly evident while riding in a car.  I have said before that he no longer drives, but even as a passenger,  he will over-react to things around him. He jumps if he thinks that there is a cause for concern. He will stomp on an imaginary brake pedal. He will make audible noises. It causes a great deal of anxiety for the both of us when we go places, especially places around town. It scares me because I am not expecting it.  I know that you are thinking that by this time, I should be expecting it, but I am honestly surprised every time.

I also have some anxiety caused by the accident in that I will not drive on snowy roads or during any kind of bad weather conditions.  If am going to be making a trip, especially in the winter, I will check the forcast and adjust my travel plans to make sure that I have good roads. Even when my daughter was expected to give birth, I went to stay near her for a month ahead of time just so that I would not have to travel in snow at the last minute. I have driven in snow since the accident mostly because I lived in an area that had a lot of snow, but I moved from that area purposely to avoid that type of climate.  I'm sure that if there is a treatment out there that works, I could benefits from it as well.

What I do know is that post-traumatic stress is very real and very emotionally crippling. Since Richard seems to associate car travel with his (which is pretty understandable), it makes local travel very stressful. In addition, he has anxiety attacks and sleep issues.  His anxiety is usually caused by the feeling that he can't breath.  This is not helped by the fact that he sleeps with a Bi-PAP machine with a mask that almost completely covers his face.  These are all issues that are part of our daily lives.  Getting up early for any reason is a real hardship for him. There are actually very few hours in a 24 hour period during which at least one of us is not awake. On a positive note, it does give both of us time during which we are basically "alone" in the house while the other one sleeps.  Doctors appointments are planned accordingly.  When you combine these issues and the other ones mentioned earlier, you can see what a big impact this might have on our family life. We are always looking for answers to these ongoing challenges.

Here is a link to a wikipedia article that might answer some of your questions about it:  https://en.wikipedia.org/wiki/Memory_and_trauma

Perspective

There is basically one thing that gave me the strength to get through the first year, and it has also helped me through the following years as well.  What is that one thing?  Perspective.  The perspective that the doctrine taught by my church provides.  The thing I have found for me is that when you look at things with an eternal perspective, the things that might seem overwhelming here, really aren't that significant eternally. I'm not saying that the accident wasn't significant, because obviously, if it weren't, I wouldn't have written so many blogposts about it.  However, the significance of it eternally is in what it has taught us, not what it has done to us. The things that have been done to us will be fixed.  They are temporary. Here are some of the doctrines that come into play as I went through this experience.

1. Families are Forever.  Richard and I were sealed as an eternal family in a Temple of the Lord.  I knew that no matter what happened to him, he would still be my husband forever.  
   
   
   
   
   
2. Resurrection.  We believe that when we are resurrected, our bodies will be perfected. Every inperfection will be gone.  All injuries will be healed.  
   
3. Doctrine & Covenants 122: 7-8 "And if thou shouldest be cast into the pit, or into the hands or murderers, and the sentence of death pass upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.  The Son of Man hath descended below them all.  Art thou greater than he?"  From this scripture, we learn that experience is part of the plan.  There will be hard times, and many others have had harder times than we have had. We believe that we grow through those experiences and become the kind of people the Lord knows we can be.  (Maybe that is one of the main reasons that I am doing this blog, to share with others the things I have learned through my experiences.) 
4. Through the Atonement of Jesus Christ all injustices will be made right. 
5. No matter what, my Heavenly Father will always be by my side as I go through difficult times, even when the situation that I am in is of my own making.  I am a daughter of God, and because of that, he will sustain me through all my life experiences. 
6. To understand how important it is to serve one another with no thought of reciprocation, even when you are in the midst of your own crisis.   Service & compassion are a big part of what we need to learn here. 
7. Priesthood blessings can bring miracles, especially if they are done by people who have the gift of healing.
8. Miracles also happen when we fast.  For some reason, when you are willing to show the Lord that you are serious enough to give up food and water for a period of time, he showers us with his love through miracles. I don't understand it completely, but I am grateful for it.
9. There are worse things than death.  
10. We have a prophet on the earth.  The first general conference after the accident, I went to the conference looking for encouragement. The man who had been president of the church and prophet for a long time had recently passed, and I needed to hear an encouraging message from the new prophet. This is what he told me ( and the rest of the church) during that conference:  "Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order to be tested, we must sometimes face challenges and difficulties. At times there appears to be no light at the tunnel’s end—no dawn to break the night’s darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea “Is there no balm in Gilead?”6We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."  I felt it was a message meant for me, and I couldn't have been more grateful.  

What has worked for me may or may not work for you. Everyone is different. Finding your own faith in challenges is one of life's many lessons. Find yours, and share what you learn.  I would love to hear what you have learned through your challenges as well.  

Be kind & a new job idea

One of my frustrations, especially at the beginning was that dealing with all the medical issues, the emotions of possibly loosing your spouse, learning things about human biology that I never thought I would be interested in, moving from my home, etc, I also had to deal with nasty people at Social Security, insurance companies, and even medical professionals that are supposed to be doing good, but clearly are not.

So I guess this blogpost is for the people that work at SS, insurance companies and medical offices.  You work with people in my situation, or a situation that is similar regularly.  Be kind. Be compassionate. These people don't need the additional stress of your nasty attitude and trying to make it difficult to get what they are legally entitled to get. They should not have to go to government agencies to get insurance companies to pay. They should not have to get friends to send letters to an insurance company to get them to cover what is medically necessary. They should not have to jump through hoops for months to receive benefits that they are obviously entitiled to get.  They should not have to report a medical facility to the state for investigation.  They should not have to watch other patients leave the facility that they are stuck in, on a stretcher, knowing they could be the next victim of medical malpractice.  I am amazed at how many times a person needs to address an issue before it is done. One phone call should take care of it, but for some reason, 20 calls later you MIGHT see a resolution. When you are dealing with hundreds of issues, this is not okay.

Why do we have to be driven to the breaking point by all of these things that are put in place to make this kind of situation easier for you?  Maybe there should be a job in which someone else is paid to handle all of these things. Right now, the only ones that would be allowed to do that would be an attorney, and attorneys are too expensive to hire them for this type of thing, at least they are for us.  Maybe there should be someone called, a "crisis assistant." If there were, it would make everything so much easier. I needed a crisis assistant, and other people need one too.

Another point, we meet people daily that are going through major things in their lives.  You probably will not know that things are happening like this in their lives.  You can't tell to look at people that they are in the middle of a tragedy or a crisis, so just treat everyone as if they are one of those people.  Think how much better the world would be if everyone did that one thing.

Possible treatments

What are the treatements that we might be able to get if we could get them covered by insurance or pay for them outright?  There are several that we know about, but there may be others that we do not yet know about. 

• The Amen clinic in California does research on brain injuries.  In fact, they work with almost everything that Richard deals with.  These include: ADHD, anxiety, Traumatic Brain Injury, Austim specturm disorders, sleep disorders, and post traumatic stress.  Here is their website:  http://www.amenclinics.com
• EFT (Emotional Freedom Technique) is an alternative medicine technique that is often used for veterans with PTSD.  The number of sessions that you need is minimal, so it is not an on-going treatment.  The problem is that they do not accept insurance so everything is out of pocket.  
• Stem cell treatments could help with a number of physical issues, but this area is still pretty new, so the real implications of it are not known.
• Hyperberic Oxygen therapy which promotes fighting infection as well as general healing. Here is information from Mayo Clinic about this kind of treatment: http://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/basics/definition/PRC-20019167
• Bone regeneration surgery talked about in a Ted talk. https://www.ted.com/talks/molly_stevens_a_new_way_to_grow_bone/discussion?language=en#t-22516 I actually emailed the presenter and she responded, but she said that they were not quite ready for live patients.  Someday....

There is little more frustrating that knowning that you can't get the care that your loved one needs because of money.  We are fortunate to have very good insurance, but even good insurance doesn't pay for everything. If you know of treatments that might help, I would love to hear about them. Maybe they will be covered, but if not, it is at least nice to know in case they may be affordable enough to do on our own.  

Money

After a catastropic event, you will receive money, sometimes in large sums from places like insurance companies or even legal settlements. (Just to verify, we never received a legal settlement or any money from a legal source.)  It is important that you do not start to take the reciept of these types of sums of money as normal.  They will not continue, and you need to be prepared for the fact that you are going to have to live a long time on those sums of money.

They need to be invested well and made secure so that you can depend on their payments to you for the rest of your life.

It is easy to think that these types of payments will continue to come your way, but if you are like we are, the loss of income is substantially more than those sums of money represent. Be careful with them.

Pay off your mortgage.  Pay off your debts.  The smaller income that you will be living on will go a lot further if you don't have these payments to make. In our case, we have to live on 70% of Richard's income 10 years ago.  Imagine going 10 years with no raise, and living on 70% of what you made then.   What happens in 10 more years when it has been 20 years since your full income?  Of course, you will need to take into consideration your age and life expectancy, but the financial future of your family will have been drastically changed.  Be smart with that money.  It may be all you have to live on for a very, very long time.

Hard things

I can't remember how I came to have this book, it was probably given to me at the time, but during Rich's hospitalization, I read a book named, "Prayers that bring miracles" by Stephen M. Bird. If I had to guess, I would say that Teresa Russell gave it to me.  (She is a living angel, by the way!)

Here is a story from the book:

"I remember the story of a rich woman who registered in a lavish hotel.  Servants followed her, pushing her son along in a wheelchair.  Since his leg muscles were not atrophied, a guest asked what casued her son's paralysis.  She replies, "Oh, he can walk, but thank God he doesn't have to."

Has this mother built her son's confidence?  Has she expanded his initiative?  Consider the ugliness of his assenting uselessness. Consider the damage to his soul and self-esteem.  Consider how she has diminished his sense of contribution to the people around him.  Could he really feel good about himself, knowing he is doing nothing useful or helpful for anyone else?

We spoil children if we grant every selfish wish or protect them from every disappointment and challenge.  We cripple their growth if we gratify their every appetite and feed them when they are full.  It is indulgence that leads us to entertain them rather than teach them.  When we carry children who should walk, we eliminate their frustration for the moment, but we diminish their long-range possibilities.  Indulgence sacrifices character for pleasure."

This story stuck with me because I was so shocked at what this woman did. How can anyone be so selfish?  Yet, if we step in when we shouldn't, and help someone do something that they need to learn to do themselves, we are this mother.  Richard couldn't walk at the time I read this. We were told he never would. We could have taken that professional assessment and been satisfied with it.  Neither of us did.  I am grateful that Richard worked so hard and so long through so much pain so that he could walk again. I know it wasn't easy. Nothing in life worth having is ever easy. When the space race started, John Kennedy said, "We will go to the moon.. not because it is easy, but because it is hard." There is a sense of accomplishment in doing something hard that someone who takes the easy way will never know.  I swore I would never be the woman in that story.  I have done many things wrong, but I hope I have succeeded in that one goal.

In a wheelchair before learning to walk at HealthSouth

Six years later and walking like a champ.  

Bone Growth Stimulators

Richard was given two different kinds of bone growth stimulators after his surgeries at Mayo Clinic.  After the first surgery, he was given was ultrasonic (Exogen).  That one would work as long as he wanted to use it and as many times as he wanted to use it.  It required gel similar to that used in a sonogram, and they would supply that as often as needed.  This one was used by putting the device with the gel on it over the area that needed to be healed.  It would be held in that location by velcro. The little part that actually stimulates bone growth is small, and we often worried if we were placing it in the correct location. The doctor would mark the location with a permanent marker, but of course, that doesn't last long and so who knows how close it was actually put to the break.  

After the second surgery, he got a electromagnetic (CMF0L1000) bone growth stimulator.  This one could only be used for a period of 20-30 minutes every 24 hours.  If you attempted to use it before that 24 hour period was over, it would not work.  It would also stop working after the 30 minutes that it was programed to run.  He would put his arm in the device and rest it there for the prescribed time. If you stop it in the middle of the treatment, you cannot restart it for 24 hours.  The device is programmed to run as they set it, and you cannot alter it.  You can use it again for the same injury, but if you want to use it for a different injury, you have to pay for the device a second time, or the insurance will be charged for that device a second time.  It can only be used 279 days in a row.  It cannot be used by another patient. Insurance was billed $4200 for this device.  The other was similarly priced.  

I am really not too sure why they changed the type of device he got for the second surgery.  We can't really say which one was more effective because his bone never healed, but we can say that Richard preferred the first one, the ultrasonic one, because he wanted to use it more frequently than it was prescribed.  I cannot say if wanting to do this was the reason it didn't heal.  You will have to draw your own conclusions about that.  

And just as a side note, medical devices are the price they are.  They do not reduce the price for any reason.  Doctors have to take less by insurance companies, hospitals do as well, but medical supply companies do not.  Their devices never go on sale, and they cannot be returned after you are finished with them to give to another patient. They are just garbage when you are done with them.  Since Rich can't stomach throwing away $9000 worth of medical equipment, we will probably keep them both forever.  

Insurance policies and coverage

It is important that you read you insurance policies after a catastrophic event.  You may qualify for benefits, and if you don't read them, you will not know that.  If you have trouble reading documents like that, have someone else read them that could help. The only insurance company that told us about benefits that we qualified for without specifically asking for them was State Farm.  They called one day to tell me that we qualified for $10,000 just because Richard was wearing a seatbelt.  We needed to provide the police report for documentation, but that is all we had to do.

Richard's work provided information about some benefits that he would qualify for under things such as long and short term disability.  They basically filed that paperwork for us so that we wouldn't have to do it ourselves, which was very helpful. Sometimes only my signature was needed. (This is another example of why have medical power of attorney is so important.)

But there were policies that we had that if we had not read them, we wouldn't know that we qualified.  Some of these benefits amounted to very large amounts of money so please, read your policy.  Even your life insurance policy, which you would not think would be applicable in this situation, had benefits.

Don't assume that some kind of insurance will not cover you in some way.  Read them all.  Call them all and ask questions if necessary.  You don't want to not receive benefits that you are entitled to receive.

Being Santa

I don't know what I thought being Santa would be like, but it has surprised me.  I guess I thought it would be about making believe.  It isn't.

The first year that Richard was Santa, he went and did a Christmas party at a dance studio with children from toddlers to tweens.  I was a spectator during that party.  The classes came in to see Santa according to age so the little ones were there without the older ones.  I saw small children that shared intimate secrets with Santa because they knew that they could trust him.  I saw them tell Santa things that they would never tell someone else. I saw their trust, their faith. It reminded me of our faith. The faith that children have in Santa is symbolic of our faith in our Heavenly Father. It is such a beautiful symbol.  It is a symbol I never saw until I stood there that day at a dance school's party.

This last year we were having lunch at Chick-fil-A in Grand Junction, CO while visiting with our family there.  A small child from across the room called out, "There's Santa!"  Her mother was obviously embarrassed.  Every man with a while beard is not Santa, after all!  Richard waved at her and she came over to see Santa.  They visited and the mom was trying to apologize. Soon, many children came to see Santa.  Richard, who always carries copies of his business card, gave her one.  She was relieved to see that her child didn't mistake some stranger with a beard for Santa Claus. This kind of thing has happened many times over the years that he has been Santa. He loves it, and the kids love it.  For me, it is kind of like being married to a celebrity. He is only a celebrity to children, but that is better than adults, who can be crazy!

Santa with Marie Osmond - and yes!  She recognized him too!
(Our friends Ashley and Seth are in the background)

Being a care taker

Before all of this happened, I went into an office and found that the person I wanted to see was at home taking care of her husband during lunch. He was seriously ill.  I couldn't even imagine doing that.  It's funny how we are taught what we need to know.

So, for the last almost ten years, I have been the care taker.  When Rich first came home, there wasn't much he could do.  He couldn't get up from furniture, the bed, the toilet, etc.  You may have noticed that he is a bit bigger than I am.  He weighs about twice as much as I do.  Lifting is hard under those conditions.  He couldn't feed himself, dress himself, groom himself, etc. He was trying to pour himself a glass of water when he first got home and poured it either in front of or behind the glass, but he just had a hard time figuring out how to get it IN the glass. (Depth perception is lost with only one eye.)  Obviously this has changed over time. He can now do almost everything on his own.  I still need to button his dress shirts and put on his ties.  I still have to put on his compression stockings.  I still need to cut his meat if it won't cut with a fork, etc. I still groom his beard weekly. And, as I have mentioned before, I drive us everywhere.  I had to continue to take over the finances, although I surely would rather not. It's not my strength.  I have to organize his time, which is a very frustrating job since he has no concept of it.  For many years, I told him that his appointments were 30 minutes before they actually were just to make sure he was going to be there on time, or at least close enough to time that we could keep the appointment. The main reason that he has progressed to the level that he has is because I refused to do it for him. If I continued to make his breakfasts and lunches, I would still be doing so because he wouldn't be able to.  This was explained to me by the wonderful OTs at HealthSouth.

I am still looking for some technology to help in some areas, especially with organizations skills, but so far I have not found what we really need.

In spite of the fact that I am alot more free now than I was 9 years ago, I still need to get out and away from it.  I need to go out with my girlfriends, my daughters, etc.  It is tiring to constantly be the one in charge.  It doesn't matter who you are, you need to get away from it.  You need to go and do something you enjoy, and forget about the problems that you have.

Being a care-taker is exhausting, overwhelming, stressful, and emotionally draining.  One of the things that has become obvious to me as I grow older is that in a relationship, one of the people is going to need the help of the other one.  Sometimes it is for a short period of time.  Sometimes it is for a long period of time, sometimes it is forever.  Sometimes it switches back and forth between the two, and sometimes it doesn't.  You don't think about those things when you get married, especially when you get married young.  You think that your spouse will always be young and strong.  Even if you realize you both will age in theory,  it is quite something different in reality.

Being a care-giver is also extremely rewarding.  You see the progress of the person that you love and you know that you had a part in that progress.  You cheer when they reach a milestone and mourn with them when they loose a capability that they used to have and have lost.  You hurt as you see them hurt, but you celebrate when they achieve a goal that they were told that they would never achieve.

Just make sure that in doing all that needs to be done (and the list is endless), that you take time for you outside of your care-giving responsibilities.  Sometimes you have to say no.  Sometimes you have to say no to the person you are caring for, and that is hard, but you have to do it!  Sometimes they become very demanding.  You will be of no use to your loved one if you have nothing left to give. Your sanity is what is keeping everyone together, so make sure that it is protected.  And also remember that you are not alone.  There are others that have done this and lived to tell the tale.  I am still living it, so I for one, understand.  Hang in there!  I believe in you!

Scars

When you are young, it is easy to see scars as imperfections, ugly reminders of injuries.  I don't see them that way at all.  I see scars as signs of overcoming, a sign that you have lived and suffered, and survived to tell the tale.

Richard has scars.  He has scars on his face, his head, his chest, his arms, his legs, his feet, his hands, & his back.  There are few places on his body that do not have scars.  I am humbled when I see them. I am humbled by the pain they represent.  I am humbled by the medical expertise and strenth that it took to create them. I am humbled at how the body heals itself.

We all have scars.  Some are not as obvious as Richard's, but we all have them.  I have scars from when my mother died, but you can't see those scars.  Some people have scars where body parts used to be, but no longer are there.

We have physical scars and we have emotional scars.  Those scars make us who we are. They give us a perspective that we otherwise would not have.  They give us empathy for others that we cannot get without having some scars.

If we see scars for what they are, we would be more likely to own our scars.  They represent a strength of character that cannot be found in those who do not possess them.

We can also learn from the scars of others, if we will.  Society has scars.  History has scars. If we learn from the scars we see in society and history, we can make a better tomorrow.  If we ignore them, we will create new scars that do not have to be experienced.

Listen to people with scars. Learn from history's scars. They have much to tell, and they can help you avoid scars of your own.

Doctors

Throughout this experience in the last almost 10 years, we have gone to a doctor at least once a week, and up to about 8 times a week.  It keeps me busy enough that having a job with regular hours is really out of the question.  There have been times when we have vacationed, and therefore gone without seeing a doctor at all for longer than a week, but we pay for it before and after because we have to increase those appointments to make up for time lost.  The different kinds of doctors we have been to include:

• Orthopedic surgeon
• Opthomologist
• Neurophycologist
• Neurologist
• Pulomologist
• Cardiologist
• Podiatrist
• Primary Care
• Psychiatrist
• Dermatologist
• Chiropractor
• Dentist
• Periodontist
• Gastroenterologist
• Hemotologist
• Urologist
• Endocrinologist
• Wound Care Doctor
• Infectious disease specialist
• Internal Medicine

It is important for us not to just have doctors, but to have the best doctors.  Finding those doctors is always a challenge, especially when you move to a new location.  We do not ever go to the "nearest" doctor, we go to the best one, and if that means traveling outside of our area, we do it.  We do and have traveled to other states to receive the kind of care that Richard needs.  Even in our own area, we usually travel quite a distance to go to the doctor.  

If you have read other posts in our story you realize that we have not always had the best doctors, and doing so has caused issues that we will live with the rest of Richard's life.  But those doctors were not our choice.  Now we have the choice, and so we make sure that we make the correct choice. A lot of research goes into finding the doctors that we use.  There are times when we have to go by the advice/suggestion of the doctors that we have.  Still, if we see red flags with a doctor, we don't stay there. We have been burned too many times.  

Our advice here is to research, talk to competant medical professionals, talk to others with major medical issues. Interview doctors. Do not take the advice of people who are friends with or go to church with, or are in a club with a doctor.  Do not take the advice of people who do not have major medical issues.  Their needs are different than those who do have medical problems. Find the best doctor, and if that means waiting in the waiting room for 3 hours or more to see the doctor that it is the best one, do it.  It is worth the wait.

Richard's best doctor in Las Vegas is a pulmonologist.  We have waited half a day in his waiting room to see him, and I have complained while waiting, even saying things like, "We are never coming back here again." And then, the doctor walks in.  He gives us 100% of his attention, knowledge, and compassion. He stays as long as he needs to to answer our questions. He never makes us feel that we are taking up too much of his time or being a burden in any way.  When you find this doctor, then waiting for half a day to see him seems like a small price to pay.  On my way out, after complaining, I say, "I see why I keep coming back.  He is worth the wait."

MRSA

I have spoken about how Richard contracted MRSA (Methicillin-resistant Staphylococcus aureus) while in Kindred Hospital.  MRSA is a drug resistant infection.  It is highly contagious and can be life-threatening.  Richard was complaining about sensitivity in his ankle, while at Kindred, and the doctor came and looked at it and said that he needed to go back to UNM to the emergency room.  He couldn't be taken anywhere without an ambulance so they sent for one and took him over there.  I have previously told the story about the surgeon that started draining the infection with minor pain killers and what a traumatic experience it was for Richard.  Here is what the ankle looked like when he was taken to the hospital.

They evenutally operated in a regular operating room.  It was then he was sent to St. John's and denied his antibiotics.  It looked like this:  

The infection was obvious.  

Months later (August) after we took him home, we were playing games with our friends Brad & Melissa.  Melissa is an EMT so she was concerned about how the ankle looked.  We called another ward member (from church) who was a nurse.  She said he needed to go have it checked out as she thought it was infected again. It was. They operated and this is what it looked like after that operation: 

It kind of looks like Frankenstein to me, but the doctors were pleased. We were visited in his hospital rooms on several occasions by groups of doctors from the center for disease control. I didn't realize how serious of an infection it was at first, but I certainly learned that summer that MRSA is nothing to mess with. 

Today, almost 10 years later, his ankle looks like this:  

Outside
You can see the sore that the AFO has caused.  You can also see the fibula has moved down and is protruding out at the ankle.  

Inside of the ankle

We have been told that the MRSA virus goes dormant in your body, but never goes away.  We have been told my others that that is not true.  It continues to be a concern for us, especially when considering any future surgeries. 

It is such a miracle that the foot is still attached.  Remember, this is the ankle that the surgeon told us on the day of the accident was severed and that he was going to take it off.  I said something, so he said he would try to save it.  Here we are almost 10 years later, and it's still attached!  That is a miracle for sure, with many little miracles along the way.  

Optical nerves

I promised to write about damage to optical nerves.  Often during severe head trauma, especially that to the forehead, optical nerves can be damaged.  When Richard awoke after more than 2 weeks, he said that he couldn't see out of his left eye.  They called in an expert in the area and they did some testing while he was still in ICU.  They told him that this type of injury does occur in patients with head trauma and that if they had known about it before then, they could have given some medicine to him that would prevent the optical nerve from dying, but that it had to be given within just a couple of days after the trauma.  Since he was not awake and aware during that time, he did not say anything and he lost the sight in that eye.

Later in the summer, he was taken to an eye doctor by ambulance and upon further investigation, they found that additional damage was done to the optical nerve of the right eye as well.  The doctor was surprised that he had as much visual range as he did have.  He did reiterate that the damage done was irreversible.

People are surprised when they hear that Richard has lost that much sight because you cannot tell it to look at him.  For the first several years the left eye tracked perfectly, but it has started to vary somewhat just recently.  They eyeball itself is absolutely normal and works fine. It is the optical nerve that is the issue.  When we asked his eye doctor about possible cures, she said that someday there may be some advancements through stem-cell research, but that she didn't think it would be in our lifetime.  Somehow the optical nerve is connected with the spinal column and therefore stem-cell research on spinal injuries could also help provide a cure for optical nerve damage, at least that is what we have been told.

The optical nerve is shown here as it is located in the brain.
http://www.anatomyzone.com/wp-content/uploads/2015/06/optic-nerve.png

Halloween & Pirates

Richard's accident was in February.  By October, he was home, at least briefly.  He was there for the Halloween parade at my work, and we lived within a mile of the school.  So, Richard came and participated in the parade.  I pushed him in a wheelchair, but it was funny because he dressed up as a pirate.  You might ask why that is funny.  He is blind in one eye, and wears an eye patch over it.  He has one hand that doesn't work and he has a hook for that.  He has a foot that doesn't work and he has a peg leg for that.  He is the PERFECT pirate!  It's like he was made to be a pirate!  So now, whenever a costume is required, he usually dresses up as a pirate, or as Santa, of course!

At Chamisa, where I worked in October of 2008.  

Dental Issues & time

Here we are 10 years after the fact, or at least close to it, and we are still finding out things that were damaged due to the accident.  Richard has had dental issues all of his life, caused mostly because of a dishonest childhood dentist, who filled cavities that weren't there, just to charge for them.  (He later admitted this, and asked for forgiveness from Rich's father.)
Recently though, the dental issues have been significantly more difficult.  I thought that there might be issues as he laid in a coma for weeks with no dental care at all.  Then his dental care was minimal for about a year since he was in a hospital bed with no way to get up and do any self-care.  They have those little sponge things in the hospital, but they really are a joke in doing any serious cleaning to teeth.  Since he has been released, he is able to care for his teeth, but that care is limited due to the dexterity that he lost in one arm and the other hand.
We have an amazing dentist in Las Vegas who has been pretty patient with the issues that Richard has had.  The last time we were in though, he told us that he one of teeth cracked front the top all the way to the root.  He thinks it is like when you get a ding in your windshield and it stays that way for awhile but one day when the weather is changing, the windshield cracks all the way across.  That is what the thinks happened with Richard's tooth.  The trauma caused the original ding, so to speak, and the crack occurred later when he bit something wrong.

I never dreamed that we could still be discovering medical problems caused by this accident almost 10 years later, but here we are.
Interestingly, accidental death and dismemberment insurance will not cover anything that happens more than a year after the accident because they conclude that if it didn't happen within the first year, it wasn't a direct result of the accident. These two things may seem unrelated, but to me, it just verifies that medical issues from the accident can and do occur more than a year later.  Sometimes they are as long as a decade later.

Gratitude

Picture courtesy of Danielle Fleming "Sold in a Snap Photography"  

I have been reminded lately that there have been a lot of people who have more difficult trials than we do.  I think that is one of the reasons it is good for the soul to get out and help someone else. Then you see how blessed you are. At least, that is how it has worked out for me as I see the things others have to suffer with in their lives.  I may not like the trials I face, but I know them by now, and so that makes them easier to bear.  Some of the things that others are going through I would not wish on my worst enemy.

War is worse. The injuries there can be physical, but they can be emotional as well, and often are.
Abuse is worse, especially if the one doing the abusing is someone who should be trusted.
Slavery is worse.
Prison is worse.
There are lots of worse things.

Our lives are pretty good.  We have been through some hard things in our lives, and this is just one of those things, but we have so much to be grateful for. We are blessed.

"No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish.  There is something in each day that can bring gratitude and joy if only we will see and appreciate it."  Dieter F. Uchtdorf