When to Visit

So, your friend or loved one has had a medical event occur. This could be surgery, accident, or even the birth of a child. You want to be there, you want to help. How do you make sure that your visit does not create stress or cause additional trauma? When is "helping" becoming hurting?

I have reviewed what has worked well for me, and identified some commonalities.

1. Check yourself. Before you do anything else you need to do a reality check. Is the visit really for them, or is it for you? Are you looking to offer support or do you want to hear the story of the accident/injury? If there is any reason for your visit other than concern for your loved one, if how they behave during the visit will affect your perception of them, skip it. I mean it. People go through so many changes that if this visit is about you or what you need, drop it. They don't need the stress. Send a card, flowers, or a care package. If you can't trust that you will be ok with whatever they need when you show up, then you don't need to go.
2. Schedule it. Set a day and time that miss necessary appointments. Therapy and medical visits are vital, usually a friendly visit is not. Be respectful of their time and the impact a late or unscheduled visit can have on their day. I schedule things a week in advance, with one simple activity per day. Anymore and I am useless by dinner time, or it knocks me out and I fall asleep at random throughout the afternoon.
   
3. Accept changes. You called before you left, you planned a time that was low impact and missed vital appointments such as medication dosages or therapy appointments, but they fell asleep. If you are thinking "How rude!" I invite you to revisit bullet point one. No, really. I repeat if you are not ok with whatever they need during your visit, skip it. I set my schedule weekly, but I set it "In Jell-O". This means I allow lots of additional space for changes and bad days,  my loved ones must accept this and they have been amazing.
4. Your loved one is different. Before you go, know that the person you see will never be the same. No matter the incident; radiation, car accident, or giving birth, their life has changed permanently. It is never the same, they are never the same. I apologize, a lot, to my family and friends. I know it. I can feel it. I can see it. Every time I speak, I hear it in my voice. The best response I got was from my baby sister. M looked at me and flat out told me to "Shut up. Stop it! You are not dead. I don't care about anything else." Accept that they are different now. Before going let go of preconceived ideas and ideals. Just listen and accept that they are still here now.
5. Leave the advice column/article/book at home. Really, just drop it. If they are dealing with an injury they have masses of information that they cant yet review because they are healing. If it was an accident then no amount of hearing about your cousins breathtaking car accident will help them. And, good heavens, if you found the "must have" new book on child rearing, use it for yourself. I read way too much on brain injury and brain tumors. Nothing is written from a survivor perspective (Which is why I started journaling in the first place.) If the person asks for the book, with no prompting, then you can offer it. But no amount of sermonizing on your personal views will endear you to your loved one.
6. Be there. Be it in cards, letters, meals dropped off, care packages, or visits. All of it is noticed. All of it is appreciated. Don't let fear overshadow your friendship. If you have questions or concerns about any of the above, talk to your loved one or their advocate. They can best answer any questions for their specific situation. This also allows the love you feel to come through, even if you struggle. Let the love be there. Laugh about it, admit to your concerns. they will let you know what they need and can tolerate.

Remember that it is about love. Love can heal and your acceptance of their journey will free them from expectation and allow them to focus on the most important goal right now, healing. God bless you.

Medicine

Medicine is a given when healing. You use it to manage the pain. To work past the pain so that you can progress. The ability to think and process past the pain helps to shorten recovery time, until you then find yourself having to recover from the medicine itself.

 

I have mulled over and revisited this post many times. I feel strongly it has to be said, but it leaves me feeling very vulnerable. Only my closest family knows what I went through.

I wanted to kill myself using my oxycodone.

There was a day when it would have been so easy to go to sleep and not wake up. The pain is unbearable some days. There are times it is so hard to feel of God's love. To believe that with the enormity of loss experienced that there is good coming. That there is a future.

That feeling of wanting to cease to exist had nothing to do with my family, my faith, or even myself. I just wanted it to be over. I was tired. Tired of fighting. Tired of hurting. Tired of grieving. The pills were there, enough for six per day, as needed. Refills available upon request.

Let me lay some ground work.

The surgery was intense. I stayed pretty heavily medicated in the hospital because the distress of the body can affect your brain function. I was on a minimum of two different pain killers. Taken at different times on different schedules. We had nicknames for my meds; "Flexi" and "Roxi". Innocuous. Simple. Safe sounding.

I don't like taking medication and have a high pain tolerance in most cases. Because of concerns for my brain function and healing potential, I didn't miss a dosage. I was sent home with a bottle of control pain killers. I took anywhere from four to six per day. One by my bedside to help me get up and function. One before riding in the car to cope with the visual stimulus. One to get up from my nap. One to go to sleep at night.

I met with my primary doctor after a few weeks and he was very concerned with my dosage. We worked to try to lessen the hold it had taken. I was taking a pain pill before every event to function at the most basic levels. One day it got to be too much.

I didn't do it. I don't know what stopped me, but I am grateful something did. In meeting with my doctor, he expressed fears that if this dosage continued I would complete recovery, only to find I had developed a strong addiction to Oxycodone. We planned that I could have three a day, then two, then one just to help me sleep at night.

The day I wanted to overdose was in the middle of trying to cut back. I was down to one or two per day. The emotional pain welled up and I was drowning. I saw it, that safe little bottle. Sitting so small on my counter top. I could take one and slow the pain so I could rest. Or I could take it all and stop hurting completely. So completely, I could just go to sleep and not wake up.

I still don't know what stopped me. I wish I could say I had some great revelation, I didn't. I just didn't do it. And I made an appointment to talk to my doctor. He was the first person I told. On his instruction the next person was my care taker, then my spouse.

That was humbling.

I had to face my strongest support and admit that I felt so weak. So vulnerable. So hopeless. The response was love. I could say that made it all better, it didn't, but it helped. Better came with time. Time I would not have had if I had given into the impulse to no longer feel.

I never took another dose of Oxycodone. I kept it on the counter to remember that pain changes like everything else. Taking away that opportunity never allows things to get better. Two weeks later I remarked to my husband that I really should get rid of it, I didn't want it in the house. He smiled and admitted he had emptied the bottle the day I told him about my struggle. He didn't want to risk us losing out on time together because of a bad day.

God is good. He is there is the quiet corners when we feel alone. He will surround us with the ones we need to face our demons and move past what is now, with hope for what can be.

Logic

Play logic puzzles with your kids. Do Mad Libs. Play with Tangrams. Make learning an experience.

These are things my mom and dad did, guess what, they are helping my mind to work on new pathways and heal more completely than if there was no basis to build on. With new ideas and tools presented in Speech and Occupational therapy I have a foundation to build on. It is shaky and incomplete, but it is a matter of connecting the missing pieces.

Today I worked on simple logic puzzles. It was challenging and fun. I can do the simplest problem solving. For example:

1. Mrs. Shore is Mary Jane's mother. Mrs. Desmond is Mrs. Shore's mother. How is Mrs. Desmond related to Mary Jane?

Yup, I had to diagram it. I got caught in all the M's. Thanks to my parents and their creative approach to learning, I knew to diagram it.

Play with your kids. Teach them to use resources to access different parts of their brain. I was always a visual learner before. Now I am much more kinesthetic. I go through the motions and actually require textures to access some of my reasoning skills. A rough towel placed over my work area helps me to stay focused and present in the now while I work to complete my homework assignments.


Games that can help access learning and reasoning:

1. Word games- word finds, crossword puzzles, Boggle
2. Jigsaw puzzles- work at different levels for different skill levels. Have the images be something you like. Make it fun. You can even work through photo printing to have personal photos reproduced into puzzles. (Walmart photo center can do it, but there are some really cool sites that have online resources too.)
3. Hidden picture games. Or, more personally, find the Thimble. Hide a small object in plain view in your home. When someone finds it, they win a small reward in addition to getting to hide it next. The trick is small and plain view. A thimble is perfect.
4. Memory- work with smaller grouping according to skill level. Again, make the images relate to the person. (I have a Princess Bride card pack that I use; I can only work with 10 pairs, anymore is overwhelming.)

Daily activities to stretch your mind:

1. Complete tasks out of order/sequence. (Not even close for me yet.)
2. Try doing some activities without using visual cues. Close your eyes, when safe to do so. I can walk better and more smoothly when not trusting my vision. (My body remembers how to move without my mind in the way.)
3. Try completing tasks with your non-dominant hand.

Play, have fun. Learning is more than just reading and reciting. More than calculating and figuring.

God Bless.

 

But they are not broken...

I have spent weeks dealing with an issue that has caused untold hours of frustration, anxiety, and distress. Medical and insurance professionals who make errors in record keeping, mis-schedule appointments, or even make clerical errors in transcribing information make so much work for injured and recovering patients.

I had brain surgery, there is no earthly reason why I am the one catching the mistakes, identifying the problem, and bringing it to their attention. It apparently matters more to me than them. I get knocked out for days afterward due to the strain and anxiety of trying to identify the problem.

In one instance I called and told them that I didn't know what was wrong, but something definitely was. They looked it up and sure enough, someone entered the wrong number. The original paperwork was sent in correctly but a mistake was made. I would love to bill them for the lost time and progress, it literally takes me days to recover. I end up unable to form sentences and perform the most basic functions.

Weeks this has been going on and each day I place calls, send emails, and collect documentation required by them to correct the mistake. Seriously! So tired of fixing mistakes.

Morning

Some mornings you wake up and just know its going to be a good day. Other days you wonder if the day would get better if you pull the covers up and sleep until tomorrow. I'm tired of sleeping. No day gets better until you force yourself to move. There are no opportunities to interact and none to look past the pain/discomfort/nightmares that haunt you. Opportunity knocks on your front door, not your bedroom door. Wake up, the world is out there waiting to make your day better. Sometimes, you just have to look for it.

In honor of this, good morning. Everyday you wake up is a good morning. One more day, one more chance, one more opportunity to change for the better. May your day be blessed.

 

Laughing is good.

I miss laughing. I miss the sound. The struggle to speak because the giggles are uncontrollable, all of it. Now when I laugh I gasp for air and lose sound quickly, a laugh only experienced by myself and unable to share with my family. So today, take one on me.

 

When mom is broken...

My kids are dealing with a real challenge at a young age. Mom is broken. I can't run, rough house, or yell with my boys. We can't chase, hide, or duck. Mom is slow. Mom is different. This change was pretty scary for them.

I found an amazing resource in helping them deal with all the changes. Play therapists and other professionals can also help children confront and cope with many forms of trauma leaving a positive impact rather than negative triggers.

My kids experienced trauma. It was minimized because of the support and personal sacrifices of others. When kids have trauma they can act out in many ways. Including school professionals in the discussion and being open about changes increases the likelihood that they can help identify needs in my children as they move forward and through this experience. God has blessed us in infinite ways.

Common Symptoms

During this experience I have had many friends and family comment that now they feel paranoid. Every headache or cough causes anxious questioning, "Is it a brain tumor?" A few things to consider, most brain tumors are not fatal. Many people live with tumors in their brain and it cause no complications. The following video may help if you are concerned for yourself or a loved one.

God bless and keep you. Know that you are noticed and loved.

Taken for Granted

I believe that we all commit the sin of losing track, taking things and even people for granted. There are some challenges craniotomy patients may experience, that their family may not be aware of.

1. Walking without watching your feet. 
2. Listening to music without having pain.
3. Watching TV without getting tired.
4. Reading and not getting double vision.
5. Being able to sit outside indefinitely without pain.
6. Pain that can be effected by medication. (I miss this some days.)
7. Not having frequent panic attacks.
8. Being able to listen to someone talk while folding clothes.
9. Eating much loved food without tasting metal or chemicals.
10. The feeling of having hair brushed.
11. Being able to whisper at night with your special someone.
12. Picking up your child when they need you.
13. Writing and not passing it through a spelling/grammar check for the fifth time.

If you woke up this morning, thank God, you woke up. You can pick up your crying child for the 7th time in a row, be grateful. You can watch a movie as a family tonight, enjoy it. Life is too short not to notice the little moments of joy. Life is amazing but if you don't pay attention, you will miss it.

God bless and keep you in His loving arms.

Being Cherished

Its an alarming thing to realize that your life has changed. There are times when I would not change this journey for anything. I am slower, able to be more patient, more willing to wait. I don't need all the answers. I don't need to know how and when everything will work out. I feel that it will work out in Gods time. I feel the prayers of others I love. I feel the influence of the Holy Spirit. I feel the love of God surround myself and my family in every day.

Overall I feel cherished and loved as never before. My patience increases in proportion to the love I feel from God. How can I be angry when facing this challenge but allowed to retain the essence of who I am? When I feel His greatness enfolding me and allowing me to reach past barriers and boundaries? When I am held, in stillness, and am able to be fully aware of the blessings of feeding myself, being able to walk, and being able to communicate, however much it is a challenge.

This awareness has opened up the ability to be calm when confronted with frantic energy, panic, and anxiety. God Is. Love Is. Consequently - Life Is.

God bless and keep you. Know that in and through Him you, as you are, are a cherished child of a Heavenly Father. The shielding from spirit is thin and His angles wait to care for and protect you, not from all of life's challenges but from the crippling influences of the Adversary. God loves you.

Star Wars Life Lessons

Sometimes all you need is a Star Wars marathon with the ones you love to remember who you are and what matters. Be silly. Be open to simplicity. Embrace your brand of crazy. Live like you are seeing your loved ones for the last time. They matter and make life worth living. So slow down and embrace the now. This life is amazing!

Anything Goes

I get so impatient. I feel as if I am in a perpetual waiting room. Waiting to get better. Waiting to drive. Waiting to get back to life.

In not wanting to think too much about things, I ignore it or pretend that things are the same. Then life makes it impossible to act like nothing is different.

Anytime I want to discuss my progress, or lack thereof, I get a reality check. I'm not dead. I am ahead of statistics by months. The cognitive behavioral work I have done for the past nine years helps me with relearning things. I taught these tools and techniques to kids, now I apply them personally. It's hard but fun. My providers say they can talk to me differently because I already have a basis for the techniques we learn. The menu and schedule I developed years ago running group homes, well, that's my life now. (For those that know, yup I am mentally and emotionally comparable to a group home kid.)

I am blessed to have a great support team. I was able to retain my personality. I can feed myself. I don't have to be on oxygen. I have bad days, but they are outnumbered by good days. I can emotionally connect to others. I kept my language and written expression. I can do many things, everything is a trade off and everything is much, mmmuuuccchhh slower, but I can do them. I can laugh, its soundless but I can do it.

Anything goes now, life is different. I need to remember that it is only 10 weeks from surgery, right now anything goes.

Family and Friends

I have met a few other post surgery patients and despite differences in our cases there are some consistent trends. These trends are familiar to each of us and little is needed before we get that "Ah-Ha!" moment of understanding when we speak together. Each has expressed that despite the love and support from family and friends, there are times that care takers become frustrated and struggle to understand exactly what we are going through. This can occur at any point in recovery as I have been told that the physical damage from the surgery will take six months to heal, damage from the tumor and functional healing will take longer. (Up to years later.) For care providers and friends this can be discouraging. I have taken time to write down a few of the commonalities to help. If you have a loved one living with a brain tumor or even post surgery you may expect any of the following things to occur, at any time during the healing process.

1. Personality changes. This can mean most anything from becoming a more kind and patient person to a pillar of the community swearing like a sailor. For me, it means I am much more patient as a general rule but I do have rapidly changing emotions and can become irrationally angry for no reason. I have to be aware because I will lash out verbally at others for sometimes no discernable reason. Being tired or overwhelmed will intensify these reactions.
2. Indecision. Please don't ask us to make a rapid or important decision. Really, please don't. Much like a deer in the headlights sighting danger, we absolutely panic and freeze up. This is so severe that on one occasion I freaked over what to serve as dinner. I had to ask for help because I could only think of dinner the night before. My kids could have ended up with rice, salad, and chicken for weeks had I not had help from family and friends. Not the end of the world until you ask your spouse/child/parent "What movie do you want to see?" or "What's for dinner/What do you want for dinner?" We don't know. No idea. Our brain is rapidly trying to figure out what dinner is, what it means, and before you know it our little brain is fried.
3. Memory problems. This can work for your benefit or against you. If you love to tell stories, go right ahead. Often I feel like a small child who loves to hear the same movie played on repeat for hours, any parent of young children knows what I am saying. (Frozen anyone?) You think you already told me this, go right ahead and tell me again, maybe I remember and maybe I don't. I will give one word of caution, if it is your parent or spouse who had surgery, when we are done healing we will remember, make sure you won't be in a lot of trouble. Also, if we don't remember please understand it is not disinterest, we really and truly don't remember. Our minds are busily engaged in healing from a life threatening situation.
4. Problem solving. Not going to happen. Nope. Just not there. Right now, I can follow simple individual instructions. Anytime something interferes with this, too bad, I can't change things unless I have someone to talk to about it and help me work through solutions. The other day I made hotdogs and salad for dinner. Things were great until I realized we had no ketchup. It took talking things through while I bordered on a panic attack to realize I could have someone go to the store and get more in time for dinner. Crisis averted.
5. Nuance. Subtlety, sarcasm, suggestions are just that. I no longer pick up on the unspoken languages of our culture. My mother in law was freaked out when my husband began to give me simple, clear, and consistent instructions on what to do to help prepare the kids for bed. In concern, "Aren't you being a little harsh?" Nope, its the only way I understand what I am being asked to do. Comments such as "The kids need to get ready for bed." will go unacknowledged. What goes through my mind? "Yes, yes they do." No follow up, no personal involvement. No awareness that as mom I am needed to help facilitate bed and bath time.

This is just a short list and should be individualized to your loved one. Our primary job is healing. Balancing the needs of loved ones is important but there are times we will not be capable. Know that inside of all of this, your loved one is still there. Also acknowledge that things will never be the same again. Work to make that a positive. If your loved one is still living with their tumor, these changes should be noted and reported to the doctor as they can indicate changes in the tumor. For yourself, use self care techniques and reach out to support services as needed. Find out who these individuals are before they are needed. A sick doctor can heal no one.

If you want a great example the following cartoon would completely freak me out right now. It would end with tears and enormous upset if personally experienced.

 

Redemption

Reading cards and letters from loved ones, I am amazed at how many of us suffer with internal challenges. Things we regret. Things we wish had not happened. History we wish to forget. Some of us are "lucky" enough to experience memory loss. The challenge is when you begin to recall, to see, and you ache. God is also there to help us to remember, allowing us the opportunity to reach out, to correct, and to try to help prevent another from regretting.

I'm ok with some of the things that I struggle with. I can look at it and see how life played out and decisions were made to move things in Gods plan to a better place. Moving to a personal place I find that I can observe more now and through watching can see things play out for good.

A parent child relationship, damaged by years of mistrust and abuse, can be healed by both finding relationships to "practice" their skills. The parent may find a friend or cousin to parent and heal with. Providing the foundation later to rebuild relationships with the child. The child may find guidance through an older friend that begins to build the skills necessary to forgive and reach out to the parent. God leaves none of us alone in this process as we, in our imperfections, try to improve.

Trials can also work as a catalyst to change. We, in our imperfect forms,  act as if time is infinite. As if there are endless opportunity, if we miss this train another will be along soon. Reminders of the insubstantial nature of life call us to recall that to live without regret requires of us, courage. Courage to ask for and extend forgiveness. To accept the redemption of God and move forward.

We, none of us, are alone. God is always with us. He knows the deep sorrows and regrets of our hearts. He knows the pain of betrayal and rejection. Allow Him to work in your life. The foundation is being laid for the regrets to become your redemption. Be brave. Be trusting. Be open to the possibility. God is with us.

Expectations and Advice

With everything going on it has been hard to not compare what was to what is. The now is so very different than what used to be. I was busy, engaged, and often overextended as if some part of me was always making up for lost time. Then the tumor and my resulting new life.

In the middle of all of this my sweet sister came to stay for a few days. We planned it out; I nap, I rest, I can't do a lot. But seeing her and hearing her laugh was like finding a missing part of myself. You see, my sisters and I all share the same voice. Listening to her laugh as we did my OT homework together, a puzzle, was so emotionally healing. I lose my voice when I laugh. (Some parts of my throat still don't work right.) Listening to her was like hearing an echo of myself that I am still here.

After two days, she headed home to her family after playing with my boys and just sitting with me doing what I have to do every day.  Before leaving she made sure to give me some good advice, some advice I have heard from others, but from her I could hear it. Here are her Great 8:

1. Stop apologizing, you're not dead.

2. Redefine success. What is a successful meal? What is successful time with each boy?
 
3. Make a daily schedule of events. Transition of 15 minutes between events.

4. Slowly transition responsibilities with reasonable expectations.

5. Slow down, you don't have to keep up with anyone else's expectations. 

6. Suspend life choices until one year post surgery, at least.

7. Measure success not failure. I am doing more and better, but not everything is urgent.

8. Take things slowly; that is not a failure, that is respecting limits.

MM, I love you. Thank you. Funnier than you think the next week my Speech Pathologist said the same thing. I think there is a lesson here for me. Thank you for being open to the Holy Spirit.

Writing Is Easier

Writing is easier than talking. It can be hard to think about all the things I have lost, there are so many things I was able to keep. When I lose perspective my team is there reminding me of how far I have come, both in comparison to myself and compared to similar situations. C* reminds me that she expected a vegetable to be wheeled into her office at our first appointment. Seeing my speech therapist last week, he commented on my progress and how far I have come.

The realities of my struggles are sometimes unexpected, things that I never would have considered have become challenging or even impossible. Examples of this include random things. Two weeks ago I found I could not chain two written instructions at once. (We use written instructions when possible to help with my comprehension and retention.) What this means is that I can only handle one instruction at a time. i.e. "Find the circle." I cannot talk or split my attention at these times. In fact I become irrationally angry when distracted and trying to focus. J* tells me that is because I am missing my own signs that it is too much.

I broke down two weeks ago when during my occupational therapy one of the instructions was to "Draw a square inside the circle." I had the option of four shapes drawn on a simple worksheet. I had to check my work three times, deep breathe, and still felt the emotions well up as if I was to drown. I was able to complete four worksheets of similar type; numbers and letters are fine, shapes and symbols are confusing. Moving to three dimensional shapes are even harder; sphere and cylinder, cube and rectangular prism, all look the same to me.

Two days ago I was faced with something else I have lost. Attempting my first outing to someplace new with my hubby, I found I could no longer use chop sticks. Normal, you say? I have been using chop sticks for years, I attempted to pick both sticks up and could not get my fingers around the sticks. I couldn't even hold both together let alone try to use them.

Sadly, the first situation I hid from my family until a few days later when I broke down while talking to my husband. I was too embarrassed to admit that I would be doing activities with my 3 year old because I couldn't keep up with our six year old. He sweetly held me while I just let loose. I wonder how many with brain trauma (dementia, concussion, PTSD) have mood swings because of all the stuff going on inside. I cry because I know enough to know where stuff is missing. What if all you knew was there is a big blank where something used to be, but you can't remember what it was?

I keep hearing in my head the old game "One of these things is not like the others..."

With the chopsticks I was able to trust my safety and admitted it right away. I ate with my fingers, its appropriate with sushi. (Volcano roll still my favorite.) We were both able to laugh and have fun without focusing on what I couldn't do. We moved past it and talked about other things. I am blessed in my advocate that he lets me have space to be silly and emotional. I will try to remember this moving forward.

So, ultimately here is the deal. I write because it is easier. I stay home because I can do more. I screen phone calls because I refuse to spend limited resources with a telemarketer. And I play preschool games with my son so I can relearn the things I have lost.