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Some of what I'm going through may be both confusing and vague. If you have no point of reference it can actually be incomprehensible to imagine what living with a brain injury is like. Many comparisons and similarities can be found to describe various aspects of the process. Computers are one of the few things that compare to the process.

In many ways my poor little brain operates much like an overloaded computer. It's like I have all these hidden programs trying to run along with my basic programing. When I say basic, I mean basic. Simple decisions such as determining time to eat; breakfast, lunch, and dinner. Determining what tools are needed to help change my sons diaper; diaper, wipes, butt cream.  Reading clocks and determining time of day, digital is a must. One of these activities at a time can be too much and requires that I close my eyes and remove myself from noises or other distractions before being able to move on.

For my technical friends its like trying to download new programming when your hard drive is fried. (Yeah, that's not going to happen.) It's like my cooling fan has stopped working and we had to replace the hard drive. Now I am trying to reload data from external hard drives but the system will overheat with frustrating frequency.

To rest and remove my mind from the overwhelming data I have to "reset" my brain. This is easily done but takes awareness and time. Awareness of the point before I overheat, once I get there it's shot. And time to stop all processes; 3-5 minutes usually can do it. I must remove all visual and sound stimuli; close my eyes and find someplace quiet, this may mean plugging my ear(s). I cannot be required to supervise anything or make simple decisions during this time.

I sit, standing doesn't work. Close my eyes, and quiet my mind. In that space I begin what my speech therapist called Balloon Breathing. I imagine that my lungs and torso are a giant deflated balloon, I like to make mine red. I inhale through my nose as if trying to blow up the balloon as far as it will go. I hold at that point, then slowly, through my mouth, release the air in a controlled stream. I hold again. My breathing this way will continue until I feel the stress bleed away from my mind and I feel as if waking after a long and restful sleep.

Reset complete.

You are amazing and I love you. God loves you and you are ever in his care.

Cake or Death

I love Eddy Izzard. If you have not yet enjoyed his comedic genius, then you are missing out. He is not for everyone but one of his skits has been brought to mind repeatedly as I have dealt with this challenge.

I am told, more frequently than I care to be, how great I am dealing with everything. When my husband hears these comments he responds with "It's not like we had much of a choice."

Hence my reference to Eddy Izzard and "Cake or Death." (I do have the video below but there is extensive use of profanity and references to some of the greatest tragedies experienced through our history. If you choose to watch, you have only yourself to blame.)

To summarize, he describes what world domination would look like if undertaken by the Church of England. Each person would be given the benign option of "Tea and Cakes or Death?" The response obviously "Cake, please." We feel in dealing with this situation it was "Surgery or Death?" Um, yeah "Surgery, please."

I spoke recently with a dear friend of mine in a similar struggle. When asked how she was dealing with the challenge she said, "Because we have to." We all have a cake or death moment when there is no choice but to buckle down and get through it. Don't worry, if you are feeling left out, your time will come. And we will be there.

All anyone can do is watch in wonder as you say "Cake, please." And we pray that in our time of challenge we will deal with it with as much grace.

Moments

I have come to firmly believe that life is made up of moments. Tiny snippets of time sliced out of busy and distraction of real connection between individuals. Eye contact with my son at bath time. Meeting a long missed friend for lunch. The kiss and tender touch of a loved one.  That is what I believe makes a "moment," the inclusion of emotion and allowing the circumstance to imprint itself on your life/mind/soul.

We believe that we impact the world, we are really here to allow it to impact us. It is through these times that we learn empathy, compassion, and service. These qualities enable us to move forward, facilitating "moments" with others.

Like water dropped into a pool it expands creating ripples and changing the surface of the world. The change does not begin with the world or with our acting upon the world. It begins when we allow the world to act and impact us. It gains in strength and magnitude when we then expand and impact others.

Allow it to change you. There are circumstances and situations right now working to act upon you, to create change. Be open to it. Allow the change to come and the ripples will flow, becoming ocean waves, sweeping pain, betrayal, and sin aside to allow the blood of Christ to wash over and heal you. To heal your loved ones. Be receptive. Be open to what God is trying to say to you specifically.

Normal

 

Of the three types of brain tumor, you want mine. Meningioma is the most common and statistically the least threatening of any brain tumor. Most are identified early and remain small, unobtrusive, not interfering with the function or form of the body. Most surgeons avoid cutting into the skull unless life or functionality is threatened. I know someone living with a meningioma for decades, few complications and yearly monitoring. Below are some things I have learned about meningioma and how blessed the path was to save my life.

• Most meningioma are harmless and patients require no other interventions other than annual monitoring. (Until the tumor begins to interfere with body and brain function.)

• Surgical removal is the preferred treatment for meningioma tumors. Skull-based meningioma are more difficult to remove surgically than many other types of brain tumor. Complete removal is ideal.

• Complete removal decreases the likelihood of the tumor regrowing; a possibility for most meningioma, especially within the first year after removal.

• Hospital stay following occipital craniotomy averages 2.2 days; 96% are elective surgeries, mine was not elective I stayed for 5 days. (see "Cake or Death")

• Of all surgeries 4% continue care to a rehab facility, unable to return home but no longer needing the intense services of the post operative nurses.  Thanks to supportive family and friends, I was able to go home. (Part of my care restricts me from caring for my children alone or even driving.)

• In-patient mortality from the tumor/surgery (likelihood of death) was 0.9%. All fatalities were cases like mine where the tumor became invasive and the surgeons were unable to help the patient.

• Occupational Therapy, Physical Therapy and Speech therapy may all be included as aftercare for the patient to regain function. (I am lucky to experience all three; seriously they are great people and help me to keep perspective.)

• Full recovery for craniotomy tends to take up to two months; when asked about this my surgeon pointed out that that statistic is generally true for elective surgery. He stated that that is the recovery time for a post occipital craniotomy, I receive the added complication of trauma created by the tumor and its subsequent removal. (He got to poke around my brain tissue to access the tumor and ensure as complete a removal as possible.)

• Recurrence of tumor increases in likelihood unless there is a complete removal of the tumor. Follow-up MRIs are often ordered at three, six, and twelve month intervals by the surgeon as part of follow-up care. If the tumor does reoccur it will happen within the first year, it is often malignant.

The identification and treatment of my tumor was outside normal. We were looking for an infection, instead we found a large, but benign, tumor. Within 24 hours from that time, 56 hours from the time of any symptoms (I thought it was the flu), I was in surgery. Thanks to good medical providers and a plan directed by God, I am still alive.

In my case, I have come to accept that I am the odd man out. I am an outlier, outside of normal. So in the words of my surgeon..."Lets see what [I] can do."

Sources
www.surgeryencyclopedia.com
http://healthhub.brighamandwomens.org


 

 

 You are amazing and I love you. God loves you and you are ever in his care.

Looking better, does not mean I'm better.

"You look great."

Best and worst words ever to a recovering patient. This is the line between actually looking like a functional person and being a functional person.

One of the hardest things to do right now is maintain an organized conversation that is continuous and makes sense. Naturally, that is what everyone is asking for at this point; insurance, disability, and even the office personnel at the doctors office. It's a neurological office, I just had brain surgery, explaining what that means to a very young intern is so frustrating.

"Can you answer some questions for me today?" (imagined head bop with ponytail bouncing.)

"No, I can't because I will speak in garbled English and incomplete sentences. Send me a letter, an email, even a text and that is loads easier. I can take my time, reread it as needed, and reference it when I get lost. Conversation, you have got to be kidding."

This is my imagined answer. My real response is along the lines of "What? Um, I guess I can try."

At this point I am starting to look like myself, my hair has grown to cover much of the scar. What I get are a lot of people confused why I don't have it together. The impatient sighs are audible when I attempt to interact in public. Pushing a shopping cart or parking close to the entrance, I often get irritated looks or even dirty stares. When alone, the only ones to make eye contact are also using assisted devices and the looks are along the lines of "You've got this, sister." We smile in sympathy as the rest of the world races by and then we move on with our day.

At one of my appointments I met another physically challenged person, about my age, his was a work accident. "Jim" has a fused back and it is difficult to walk. (I thank God, mine is neurological and I have hope for improvement.) He routinely gets dirty looks because he is now able to drive but must use handicap parking. Jim has been yelled at, talked to, and even lectured about how awful he is for using handicap parking. Jim looks normal, he has worked hard to get away from his walker and cane. What right do people have to judge that since he looks well he must be better?

I still use my walker for long distances or unfamiliar locations. I am still a fall risk. But I hope that as I work to move forward, you all will be patient. Looking better does not mean that things are all better.

Side note: You would not believe how long it takes me to edit each blog. Writing, I can talk about the things I deal with that others may not be able to express.

Bad Days

Dear God,

Today was good in a lot of ways. I was so overwhelmed/flooded/stretched, I just couldn't enjoy it.

What I was compared to what I am seems like so much is gone. After extensive reading and talking to workers in the field, I am what people hope for. (God, I can't take it.)

Sometimes the loss is so great. I want to pick up my son when he hurts and I can't. The sounds of my sons laughing and enjoying each other causes me to clench up as I deal with the onslaught of stimuli. To handle the swelling that comes in waves of pressure on my brain, lymph tissue, nerves and muscles; really there is no description that can illustrate the pain in areas of numbness and the phantom fleeting sense of loss that skitters through my mind. Breathe, it's all I can do. Balloon breathing into my belly to deepen the focus.

How do I keep this from hurting my babies? My family? My friends? Its not right that my limits should affect and change so much. I ache to do more but find in myself an actual inability to function past my present limits. I know what the doctors would say, relax and reset. Take time to heal. The pressure to help, to serve is internal. It's no one but who I am telling me I need to do more. My friends and family have been great, but I become flooded or taxed and I lock up. Not freeze, but relegated to the role of observer more than participant. I grieve for the loss and struggle to understand with a limited capacity how blessed I am, how good God has been, but I grieve.

God, how I miss being able to help. To lift my sick son and hold him. To visit and rejoice with friends without needing to retreat and draw back because its too much. To empty the bottom rack of the goddamn dishwasher without help. I was made to serve and now I am locked into limited abilities and any pushing endangers what I have been blessed to regain.

God, I don't need words of platitude. I think today I'm just going to grieve. I ache, and its ok. Tomorrow will be better, but it won't get better if I also don't admit that there are bad days.

Some days suck.



You are amazing and I love you. God loves you and you are ever in his care.

The Whole in my Bucket

"There's a hole in my bucket dear Liza, dear Liza. There's a hole in my bucket, dear Liza a hole."



The plan God has given for our lives offers many calls and responsibilities; some daily, some life endeavors. These calls for family focused work, proselytizing, avoiding temptations, correcting mistakes, etc. While each is a worthy call and requires our attention, it's overwhelming. Sometimes I am happy just making it through the day. Now it takes me even longer to attempt any of these tasks.

I have found that by using the opportunity to serve while I can, help when able, and not do more than I am capable of, this giant hole in my life seems less daunting to face. I can still help, I am still in here somewhere.

This is my first experience with any challenge of this magnitude. I have found one truth: people either are afraid to address your injury/illness or don't know how to separate you from the injury. This results in not being asked for help, or being asked to help in ways in which you are not capable. Both of which can leave a person feeling less than. No slight is intended but really, given the pain and sometimes medications people are on, there is not much ability to think past the initial "ouch" of exclusion. Here are my rules of engagement:


1. Don't pretend I'm not here. Any person with an obvious physical disability does not want you to pretend its not there. Don't avert your eyes. Don't pretend you can't see us, just don't only see the walker/wheelchair. Use the social skills you learned for any other person, look us in the eye, shake hands or hug as appropriate, ask us if we caught the new Marvel movie.

2. Use your words. If the injury is something that you fear may cause pain if we talk or hug or whatever, ask. We understand our limits and can tell you what limits we need. If you forget, because you are busy and have a million other things, ask again. We will not become offended, honestly we have so many things going on, we probably forgot we already told you.

3. Don't drag your kid away. I have had kids curious, fascinated, and confused by my walker. I have also had them dragged away by well meaning parents whispering harshly "don't stare", "that's rude" or other varieties in like manner. Congratulations for creating a fear response in your child when it was unnecessary. Instead try this, ask if its ok for your kid to ask questions. Then stay close to help them understand anything that may be confusing. Kids grasp things so much more easily than adults, I would love to see kids able to look past physical assist tools rather than be afraid of them.

4. Ask me how I can serve and help. I want to serve. I want to be included.  I can't make a full meal, but I can bake brownies. I can't knock on doors but with time and planning can make phone calls or send emails.

Its simple, its basic. I am a whole person, not just a disability. It's ok to treat me like a whole person, because I am. I am all here. Me with a walker right now, that is whole for me. If I continue to need other assistance, yup still me. If my status deteriorates and I need more tools such as a wheelchair, you guessed it, still me.

We are each of us whole. Sometimes we have a hole in our bucket, but we are still a bucket. Holes do not change our bucket status. My disability does not make me less than, I'm just different than, learning new things. stick around and you might just learn something too.