Go Grey in May

May is Brain Tumor Awareness month.  Go Grey in May. The world is getting closer to a cure and every day warriors battle on. Some live with their tumors having regular scans and praying for no change. Others have violent and invasive surgeries praying that the deficits from surgery will be less than those caused by the tumor. Many live with multiple tumors. Updated research shows that 50% of meningioma tumors will regrow by 10-20 years post surgery. Constant evaluations. Regular reviews. Specialist visits. All this is part of the life of a brain tumor patient. Every day in May I will explore another aspect of this journey.

Beautiful Boys

I have three wonderful sons. Born into our family when we had accepted that this was not in our future. What joy, what stress, what moments they make for me.

Beautiful Boys

How dear you are to me.
Yells and smells and whatever may be.

Hugs and kisses, short and sweet.
Rough and tumble, all hands and feet.

I am blessed each hour, each day, each week.
Grateful for each moment, I never did seek.

Blessings and circumstance, these come and go.
Through our god an eternal family we'll know.

Fingerprints, smudges, all gone too fast.
Our eternal family forever will last.

Lucky

I feel stuck in a story of hope and loss, grief and healing. Right now things are never just one way. There are bad days but they are balanced out with incredible moments. Snippets that, thanks to the removal of my tumor, I can remember and reflect on. So much I don't control. I begin each week, each day with a plan or an idea of what I would like to do. By lunchtime that plan has usually changed. I know I'm not social. I know that being home is comfortable. I have great friends that draw me out, but it is so easy to slip into patterns of complacency. I think that scares me the most. The moment I stop pushing, I fear that I am lost.

No one knows yet what TBI and brain tumor patients are capable of. Some seem to suffer no ill effects at first but traumas can show up years later after the triggering event. Uninformed doctors and other professionals then continue to build on myths with outdated and ill-informed opinions.

I found myself quite agitated today confronting an opinion, expressed in the news media. Let's just say that the opinion/information expressed was minimizing and demeaning for those like me who struggle daily with recovery. Remove it, recover, no ill effects. This was the basic idea expressed. It's not a big deal. The tumor doesn't cause symptoms. It's benign, you're lucky.

I know I'm lucky, not because the tumor is considered benign, but because I lived.

I lived.

This is my story for the past 11 months.

Someone familiar with the nature of the meningioma tissue but not my tumor would say that there was no harm done. My tumor was not integrated with other tissues. It did not grow out of my neurons, but out of the protective covering of my brain. The tissue was fibrous, thick, and heavy. It was protective, but it still almost killed me.

It surrounded my left cranial nerves, it was crushing my midbrain, it had compressed my cerebellum, displacing the structure and the pressure had caused my frontal lobe to swell dangerously. My tumor had developed a network of vessels and structures to support it. Each vessel had to be cauterized before more tissue could be removed. Carved out one piece at a time because of the integration of my nerves. The supportive structure for my cerebrospinal fluid, CV4, had ben completely compressed. Headaches, my noticeable symptom for the past few years, were likely caused by the pressure buildup of "not enough room".

Something had to give. It was me. I almost lost me.

I am lucky.

I am lucky to have had the surgeon I did. Lucky that the ER doctor didn't assume that since I was a woman I was just overreacting. Lucky that I had family and friends that rallied to support my family in this trial. I am lucky, not because it was benign, but because I still live. Then again, I do believe that luck had little to do with it. God is good. Life is worth living fully. Every moment has beauty if we take the time to see it. Slow down, look around you. The moments are there.

God bless.

Avoid Dis-sing Ability



Many forms of discrimination exist, racism, sexism, even ageism. They all look at the outside description, not the person. Essentially, seeing a category and not the individual. For example I am  white, a female, and in middle age. These facts are true, but they do not make up or measure who I am. There is one category, still in the shadows, little talked about but very much present in our educational and employment centers; ableism. Below, I offer a number of items and articles available to understand other situations, points of view and perspectives.

One woman offers her perspective on this as she lives in the "grey areas". Some days are good, others are not. Living My Life In The Grey Area

Additionally many resources work to make disability law accessible and easily understood by both providers of services and those requiring accommodations. Discrimination and Disability Law

Employers can benefit the community and avoid costly litigation by staying informed of laws and statutes that govern hiring and employment practices. Mighty Works

My realm of disability rests mainly in my challenges with a severe Traumatic Brain Injury. I am not alone. TBI As those with concussive episodes, PTSD, and other causes of neurological trauma heal, it is vital that we been seen as individuals and not placed on a shelf, out of the way, to wait quietly until we fade away. That's not me. It's never been me and it will not ever be me. I am going to push as far as I can to stretch my abilities and see how far the brain really can heal.

All I ask, all anyone really asks, is to be seen as a person, an individual. If you keep that in mind, in all your interactions, to see the humanity, the person, you will do well. When we lose our view of each other as individuals, we lose a part of ourselves and amazing opportunities for increased understanding and growth. 

God bless you. Keep going, keep healing. You can do this!

(You Can) Go Your Own Way

Well, it has happened. Sitting talking about goals and life and education planning post injury I ran into a huge wall of "you can't". Not that I couldn't meet the educational requirements, or that I couldn't perform the functions required. The issue rests on the fact that I can not take and absorb the amount of information required as fast as the program, unmodified, dictates. This timeline is dictated only by the administrators and in no way reflects the educational needs or requirements of the field or national program standards.

In speaking with student services I found I could have accommodations for note taking, for test times. However, as the program is dictated, it automatically eliminates anyone with more disabilities than those mentioned. I can not take the classes other ways. I can not change the amount of course work needed each term (up to 21 credit hours in one semester) by extending the program. When it was pointed out how it could be done, the answer simply was "That's not the way we do it."

I was then directed to look at other options. Options for education in areas with little to no economic value and opportunity for job growth. It was like being shown the door and denied the chance to perform in a way where I can benefit others and be an asset, using my strengths, past experiences, and education.

Currently the school and its program administrators refuse to accommodate my disability. They refuse to think outside the box or even consider options where it has been demonstrated accommodations are possible. "That's not the way we do it."

I am grateful that when in a similar position I possessed the ability to help and meet the needs of my students; whether medical, emotional, or technical. I was given the freedom in my program to train in a way that met the needs of the student and prepared them for their chosen profession, despite any presenting challenges. Working with children in foster care we encouraged individualization and wanted to partner with clients and families in ways that built lasting skills and positive change.

This is who we are. This is who the caretakers and providers are. Not someone who says "That's not the way we do it." Caretakers say, "Let's get it done."

So, to you, you who refuse to look at anything other than "the way we do it", congratulations, I am now completely pissed off.

I had heard of Disability Discrimination, now I have seen its ugly face. Fascinating and discouraging that it is within the field of educating the next generation of our care providers.

How dare you say what I can or can not accomplish? You don't know me. You never will, as long as you refuse to actually work to make things better. Sit in your ivory tower, you will miss out on the beauty of meeting someone outside your perfect world that might actually open you up to seeing others as individuals. Disabled persons are not objects in your way. We are not incapable. If you refuse to accept us as individuals, you will never know what we can be. We know. We know who we are. The ones who choose to see it will be gifted with a world view more open and capable than you will ever let yourself see. I know who I am.

Hold on to your hat, I'm getting it done.

"What Do I Say?"

We all have them, those moments and times when we can't fathom what someone else is going through and we freeze. What do I do? What can I do? What do I say? The doubts creep in, the second guessing. Wondering if we are making it worse instead of better. We fear putting ourselves out there. We fear crossing lines and boundaries and we sit, paralyzed, unable to move one way or the next.

Coming from someone who has had many bad days and good days all I can tell you, let go of yourself, your own ego, and do something. If you don't know what to say, say that. If you just hurt for someone, its ok to acknowledge it. The worst thing you can do is put the responsibility for your sense of ego on the person going through the trial. This is not about your agenda or experience, it is about the other person and showing them that they are not alone. That is it. It is not about you!

I would make some simple cautions; do not give advice, do not make things about you, and accept that the other person may not want your help.


What should you do? What can you do?

• Show and express real empathy. (B. Brown has an amazing video online that demonstrates how to show empathy to others.)

 

 

• Offer tangible help. Be willing to get your hands dirty; fold laundry, play with kids, bring chocolate. What need is best able to be filled by you? When do you need to recruit others to help?

• Be honest and genuine in your communications. Differences in lifestyle, economy, politics, even family status, well, they don't matter when showing love and concern for others. Be honest in your statements and the love and concern will come through. Trials are not a time for second guessing and judgment. As I said earlier, don't give advice.
• Most importantly, show love and concern for the person. This isn't about you and your ego. Recognition, honor, excitement- a real friend is in for the long haul, they don't need the attention garnered by helping.

 

I have heard it said that "If you can't be kind, be quiet." While good advice, silence can often speak of emotional distance to someone experiencing a life trial. I would suggest a soft smile, a hug or handshake, expression of concern for them as a person, and let go of you. Let go and serve them as you can, in the ways you can. We can, in all ways, trust in the spirit that leadeth to do good.

 



 

 

God bless and keep you. 

Enough is Enough

Here it is. I faced dying last year. I have limited resources. I am unable to do many things. I am in almost near constant pain. all of that pales in comparison to the fear in my heart today. The issue that concerns me has to do with what passes for "news" and the level of poison and prejudice spewed by generally nice individuals toward others and about situations that they know nothing. I am fearful not because I believe that what they are saying is true, but that they are so completely blinded by propaganda that they do not even think to question or evaluate the prejudices they are continuing to spread.

It is vile. It is beneath us. These are people that I personally know and like. The trouble is that both sides include people that I like, and yet in this rhetoric driven world, they can never hear what the other person is saying because they are too busy repeating the garbage being served up to them.

My heavens, I almost died last year. What you are saying will not matter ten years from now. the political climate is fickle at best but the personal relationships that you are damaging have the potential to become eternal ties. Why waste your time and energy this way? You are not building something, you are tearing some one down.

There is no time taken for understanding. No space  or room left for differing opinions and points of view. And critical thinking seems to be a skill left off the table.

Let me offer a few personal insights.

1. The world needs a variety of points of view and experiences to create the best balance of ideas and policy to serve the members of society. We demonstrate this model best in individual families through times when we can learn about issues and counsel together, allowing each person a voice and a share in the discussion.

2. You will not like everything that happens or every choice another person makes. Get over it, you don't have to. Love the individual even if you do not love the decision.

3. You do not get to demean or diminish someone's voice. Each deserves the opportunity to speak and be heard without facing personal attack and threats. If you don't like what is being said, stop giving them a platform.

4. You absolutely have the responsibility to stop prejudice and base propaganda when you find it. It may not be toward you, but, if unchecked, is a threat to all who believe in freedom of thought and self expression. If you do not stand up for the rights of others, you may be the next person to be marginalized.

5. Stand up for something, but don't belittle another's right to stand up for what they believe. I would rather be for an ideal that I believe in than constantly fighting against something that I oppose. Positivity offers more power and strength than any negativity.

6. Apply critical thinking. Statements such as "always", "never", and gross generalizations should be avoided whenever possible. Even if it supports a stance or position you believe in. That position is stronger if you use honesty and accuracy whenever possible.

There it is, my personal code of how I will try to conduct myself post-crisis. Take it or leave it. I beg you to remember love and civility. Relationships are eternal, politics are transitory.

It Figures

You know how people talk about how hard it is to live and function on disability? Yeah, they are not kidding. Here are some things I have learned so far on this little journey of mine.

1. If you look well, you probably don't feel well. I am more likely to put on concealer and makeup on days when I feel and look like garbage. I use a lot of concealer to cover circles under my eyes, blush to add some color to my cheeks, and lots of bronzer. (You can thank my makeup fetish pre-injury for my stores of makeup; lets face it, I couldn't buy it all now.) Please don't punish people for not "looking" disabled.
2. Whatever is hardest for you is the next thing you need to do. Finding the right kind of help is not easy, navigating the phone trees and gate keepers is even harder. Making things hardest for the most vulnerable in our population is just awful. Why must it be so hard to find help? I cant tell you the level of frustration I experience when, despite knowing my issues I am told by someone offering assistance "Well, its really very obvious." No, no its not. Not to me. nothing is obvious to me and to speak to me in such a way simply tells me that you didn't bother to read in my file how it is best to ensure that I need vital information. You forgot about me as an individual and started counting me as a number.
   
3. Prove who you are. Speaking is still hard, remembering basic information and numbers is even harder. Every time I contact any support services I must first prove who I am by reviewing full name, birthdate, address, phone number listed on the account which could be any of our family phones, and so much other information made up of a collection of random life milestones. I have to prewrite my questions so that by the time I am done trying to prove who I am, I can ask and get the right answers to my questions.
4. A person can get lost standing in an open room. This one is way too easy for me to accomplish. I happened for me the other day. I can be standing in one place, know exactly where I am, but if the environment changes, such as adding groups of people, I am lost. Too much to look at. Too much going on. Going out with loved ones is not just about the energy it takes to spend time with someone you care for, its about knowingly putting yourself in a position to be visually and auditorially assaulted. I get the extra bonus of trying to think around these things to attempt to focus in a meaningful way on the other person.
5. I have magical skills of becoming tired just doing nothing. It takes a special talent for becoming overwhelmed to fatigue not doing anything. Only, that's not really true. The problem is that my brain is really trying to do everything. With no filter to ignore some of the distractions out in the world, I am trying to absorb every sight, sound, and stimulus at the same level of intensity. I have no filter. I find I am not surprised when kids get confused, because I do. What we expect of new little people is really unfair to them.
   
6. Even if you walked the same path, you can never fully appreciate someone's journey. Meningioma is the most common form of brain tumor. Not all tumors are created equally, thank goodness! Even if two people share the same type of brain tumor the size, location, age, and impact vary greatly from patient to patient. Listening with empathy to what the other person is telling you becomes vital. Showing concern for who they are and the needs they express is the only way we can really learn and show another person that we care. Additionally accept that if the other person says you don't really understand, guess what? You don't. You can't and neither can I. So set aside your own ego and listen with your heart.

I have been so incredibly blessed with the family and friends that I have. What hope and what joy they bring into my life. I know that God lives. I know He is aware of each of us and the journey we are undertaking. I know that He possesses perfect empathy and love. God bless and keep you in your trials.

Going Quiet

I find that I can go very quiet when coping with strong and often unfamiliar emotions. Despite this being a challenge I have worked on, even prior to my tumor diagnosis, it is still very difficult for me. The blessing is that I can feel and honestly express emotions, but sometimes I have to pull back in order to figure out what it is I am feeling and dealing with.

I have triggers and cues to help me identify areas of anxiety and stress. These can become incredibly overwhelming. In facing some struggles of the past few weeks, I have been told repeatedly to slow down. Anyone that knows me, knows this is not an easy thing. I live ready and waiting to see how fast I can run. (I ran sprints in track when I was younger because I didn't have patience for anything longer.)

I keep reminding myself that this is a marathon, not a sprint. I can be patient with myself and others. I can slow down and embrace the joy that is each moment. I can respect lags and periods of seemingly no progress for what they are, a chance to learn, to appreciate, and to grow inside.

It's not easy, but with God I can do it.

God bless and keep you.