Surviving Life After Brain Surgery

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I have struggled for three and a half years to adjust to life after brain surgery. I began writing so that I could make sense of all the changes that seemed to occur overnight. Writing truly has been a useful tool & a very good emotional outlet for me . We all need connection. We need to understand and be understood. I am sharing this to let you know that there are others that understand the difficulty of your unique situation.  If you are struggling to adjust to life after brain surgery, I hope this article helps you feel a little less alone & empowers you to accept new aspects of your life.

Life Before Brain Surgery

Three and a half years ago, my life was very different than it is now. I was very bubbly &  gregarious. I didn’t know the meaning of the word shy. I thrived from making friends everywhere I went. I was definitely a planner & I frequently planned parties & fun outings with friends. Although, my husband & I didn’t have much money, we greatly enjoyed sharing what we had with others. Overall, we had a simple life, but it was rich. We enjoyed simple things we could afford like hiking, rafting, tubing, picnicking & being with our friends. With those things & our love for each other & the Bible, our life was meaningful.

Challenged By Ongoing Health Issues

Despite our positive outlook on life, both of us have always been challenged by various health issues. At a young age after many tests, doctors diagnosed me with Chronic Fatigue Syndrome. My husband also deals with Chronic Fatigue due to a combination of Hypoglycemia & digestive issues. Our combination of health issues has made life very difficult. Now we would face an even more challenging obstacle. In the fall of 2009, I started feeling more fatigued than usual. I also started losing hearing in my right hear. My doctor thought I was having allergy/sinus issues & gave me a shot to help clear it up. It seemed like my hearing was improving, but as time went by, my hearing continued to fade in my right ear.

Diagnosed with an Acoustic Neuroma

By summer 2010, I started losing my balance, sometimes wobbling unsteadily as I walked. Then, I begin to fall occasionally. At this point, I decided to go to the doctor because whatever was going on was beyond Chronic Fatigue. I went to an eye, ear, nose & throat specialist. The doctor said my balance was severely off & I needed to have an MRI of my brain. In September 2010, I was diagnosed with a large Acoustic Neuroma – a benign brain tumor.

Affects The Tumor Was Having On me

This type of tumor is very slow growing & usually goes undetected for many years. At this point, the tumor was so large that it was pushing on my cerebellum, destroyed hearing in my right ear & had grown onto my facial nerve. It was also affecting the parts of my brain that control motor functions, like writing, coordination & walking. My long term & short term memory were also affected as well as my comprehension and focus. From time to time, I thought to myself that I was just imagining I felt bad….that I could not actually be feeling as bad as I thought. No, It was not my imagination! I had a very large brain tumor that had been impacting my life for a long time.

Life After Surgery

In October 2010, just one month after the brain tumor was found, I had surgery. After surgery, there were many immediate adjustments I had to make. The tumor destroyed the hearing in my right hear & after surgery the little hearing I had left in that ear was completely gone. I was very sensitive to noise & was startled quite easily. I still am. I also had to deal with another severe blow. The removal of the tumor meant that the right side of my face would be paralyzed. The doctors said there was some hope that the facial nerve might repair, but most likely it would not.

After five months of “recovery” I returned to my part time job. Energy, communication, focus & comprehension were a nightmare for me. I was also struggling to care for basic necessities at home. My social life changed greatly as well. I was no longer gregarious. I was shy, scared of crowds & overwhelmed just to be involved in a conversation. In fact, on many days, just leaving home was mentally overwhelming and still can be. Despite proactive determination to improve my energy & cognitive abilities I seemed to have plateaued after about a year and a half. I couldn’t even handle my part time job. That was quite a blow!

Struggling To Make Sense Of All The Changes

 From the start, I worked very hard to make adjustments and push for improvement but progress was very slow. I didn’t understand why progress was so slow, because I was working very hard to have a normal life. It was maddening. I became depressed. I struggled to accept that these limitations were not going to change despite how hard I pushed. After two and a half years, I began to slowly accept my new limitations.

To this day, I have not out grown many of these symptoms. It can be a struggle to make it through an average, ordinary day even when things are simple & uncomplicated. Many normal activities & interactions are stressors for me.  I have to be aware of & avoid potential stressors, because If I get overwhelmed I become unable to function. To cope with this, I must spend a lot of time alone. I am a very social person at heart so this continues to be difficult.  

Adjusting To A New Way Of Life

Here are a few things that helped me to move forward. First, to get through this, you need a small group of family & friends that support you. There is so much change after brain surgery that you will not understand. It is confusing to see yourself struggling with basic activities that may have been easy for you before. Some things that used to be strengths may now be weaknesses. It really messes with your mind. Having people in your life that are not critical or judgemental & truly believe in you & rally behind you, can propel you passed much pain & confusion that brain trauma can bring.

My husband has been tremendous in helping me heal and move forward. He listens to my confused ramblings with a sympathetic & patient ear as I keep trying to understand my feelings & limitations. I really struggle emotionally knowing how much this affects him too. He admits that it can be difficult sometimes, but that I’m doing well considering the trauma my brain went through. We strive hard to balance this by making sure he takes time to heal, relax & have some time to himself.

Surround yourself with friends that do get it –  or at least friends that try to

Frankly, some friends may cause you to feel bad about yourself even though they don’t mean to. They may minimize the severity of your situation or think that your limitations are self imposed, thereby making you feel that you aren’t being strong enough, that you are weak minded, or that you are lazy. Some of your friends will not be able to give you the love & caring you need. Although they may be strong in some areas they may not be good at nurturing & understanding.

This will hurt & be unexpected. It may leave you wondering who your friends really are. It is important to remember that we should give our friends the benefit of the doubt.  If you are struggling to understand this, then other people will also struggle to understand. It is a confusing time. We cannot expect that all of our friends will get it. On the other hand, you do need to boost your own awareness, self confidence & ability to handle your new limitations. In order to thrive & heal, you may need to step away from friends that make you feel discouraged. I really started feeling better once I did that.

Work Toward Acceptance & Open Your Mind To New Goals, Hobbies & Even New Friends

I have learned that you do need to grieve over your losses – but you also have to work toward acceptance. You have changed, what you can do has changed & what you need may have changed. You need a fresh prospective that will actively help you to grow into this change. Don’t fight the changes, trying to reach back to your past self. Instead, grow with it and you will be happier and more successful. You may eventually enjoy some of theses changes, but you must be diligent & work toward acceptance first.

Be Realistic & Set Reasonable Expectations For Yourself

To be happy we must have a positive attitude, set realistic goals & see the need for personal growth in our lives – despite how much our life may have changed. I have had many overwhelming days & I have to reminded myself that these bad days don’t mean that I have a bad attitude or have failed to moved forward. I had brain surgery & that’s not your average everyday problem! I have to accept, that I will have bad days. By setting reasonable goals for myself, I have something positive to remember & focus my mind on when I have bad days.

 What has helped me most?

Above all, I attribute my positive attitude to Jehovah. He has taught me how to cope with trials, how to be happy, how to have a successful marriage & how to get along well with others. Even more than that, he has given me “a future & a hope” – Jeremiah 29:11. For me, I keep close in mind the promises God has made for a better future. I also enjoy bringing the Bible’s happy message of comfort & hope to others whenever I can. In addition, personal Bible study helps me to have a more intimate relationship with God, understand his purposes & definitely keeps me grounded when all of this seems unbearable.If you think the Bible could help you, please see this video –  http://www.jw.org/en/video-why-study-the-bible/

I wish you well & hope your experience becomes a journey of acceptance & growth.

Sincerely, Heather Philpott

© Heather Philpott 2014

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