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Living with a Severe Mental Disability (Even When you Can't See It)

Updated on December 10, 2015
Hope Kulin profile image

Hope Kulin is a wife and mother, who also happens to be a brain cancer survivor, candidly sharing her experience the good, bad, and ugly.

My Unique Qualifications to Write about Mental Disabilities

In 2010 I was diagnosed with a Glioblastoma, a brain tumor. By the time they found it, it was the size of a golf ball and the only treatment was surgery. I did have the surgery, technically called a "stealth reduction of a mass in the right temporal lobe." If anyone is getting ready to have this surgery, let me break it down into layman's terms. They are going to shave your head, cut your skull open, cut into your brain and remove as much of the tumor as possible. Note I say as much as possible. You will never be cleared or determined cancer free. They then put your skull back, staple the cut closed and put a compression wrap on kind of like a cast while the skull heals.

Now here is another MAJOR point that you may miss if you are dealing with there is a major difference in the brain and every other part of the body (besides the fact that very little is known about the brain): Brain matter does not heal. Let me be VERY clear about this and it is imperative that you understand this line. Brain matter does NOT heal EVER!

This is important because any time you are having brain surgery damage will be done to the brain. In my case, after the surgery I thought everything was fine. I thought my brain would heal and I would go back to normal. Since the brain does not heal I was left with the following medical complications: Anteriograde Amnesia, Retrograde Amnesia, Dementia, Confabulation, Anxiety, Depression and Insomnia. These diagnoses are my qualifications to write about mental disabilities.

Appearances Can Be Deceiving

If you were to see me out somewhere you would not know the extent or severity of my brain damage or disabilities. I say this not out of pride but because I am that severely managed. My management begins from the moment I wake up until the moment I go to bed. I utilize tools such as my cell phone, tablet, calendars, alarms, a full time caregiver, exercise to the point of exhaustion, and much much more.

You see the issue with mental illnesses and brain trauma is that the only way it can be seen is with an MRI. The MRI can show the physical damage to the brain otherwise it cannot be seen. If someone is highly managed like I am you cannot see my disabilities at all. When I say at all I mean you would have to spend days with me to know the extent of my damage. You see my damage shows in the fact that I have absolutely no idea what actually happened yesterday, or the day before.

The exercise that allows me to function in a way that others can tolerate me also makes me look like I am in great shape. My husband makes sure I take a shower daily after I work out and he takes me to a hairdresser that gives me haircuts so I don't have to actually do anything for it to look decent. He has hand picked every one of my outfits and lays them out nightly for me. Our daughter who is now nine also knows my condition and she knows how to use my phone, alarms, husband's phone number, and friends who can support her when I have a bad day.

When you see someone like me who is highly managed don't feel bad if you think we are "normal." We and those who love us do a tremendous amount to give me the appearance of being normal.

Tools to Help Us Look Normal and Have a Normal Life

If you are fortunate or unfortunate enough to have brain surgery be prepared for diagnoses just like mine. Doing yourself a favor accept this as quickly as possible. Once you can accept it, you can begin to get help for it. There have been tremendous advances in technology and medical care; however, you need to make sure you are correctly diagnosed and it is in your case file as quickly as humanly possible. The quicker you can get it in your file the faster you can get to the doctors that you need.

When I was diagnosed with my brain tumor we did not have insurance. I was blessed enough to get Medicaid. This is not something I am proud of, but considering we lost our job two days before I was diagnosed, and our house three days after the diagnoses, seven days later I was in surgery. Had I accepted the severity of my situation, I would have qualified for Medicare by now and actually have access to the doctors that I so desperately need for the next stage of my care. As is, I use tools that are accessible to everyone. Here are some of the best tools in my quiver:

Google Calendar: This is by far the best tool I have found. You can color code your calendars, sync them across different platforms, access them from any computer an added benefit is that family, friends, doctors,and caregivers have access in order to make sure my calendars are in order. This also lets them know where I am at any given time. My days are structured from the moment I wake up until the moment I go to sleep. Friends and family know that if I need to do something they physically watch me put it into my calendar. The on going joke now is that if you have me put something in for three years from now I will be the one who will be there.

Exercise: This is my nemesis. I cannot begin to explain how much I despise exercise. But... I know that without exercise my mind has too many firings to function. With the extra firings, more memories get lost, the more memories I lose, the more frustrated I get, the more that happens, the worse life gets for everyone around me. Please note here that I don't notice anything different, but over time and counseling I have found that those who love me are not lying to me and the least I can do is listen to them when they try to offer constructive criticism.

Counselors: These are confidants you can tell your deepest darkest feelings to in order to get them off your chest. These people are not your family, they are not your friends, they can help you accept things that you don't know how to believe yourself. These individuals are trained and supportive. Don't take the first one that comes along, find one that fits for you. If you are married, you will also want to get a marriage counselor.

Alarms: Alarms will become a lifeline. A good phone can allow you to access multiple alarms, multiple calendars, and GPS. These alarms can keep you on the same track as the rest of the world.

Journal: Journaling is healthy. It is a way for us to get things off our chest. By writing your thoughts and feelings down, you have a way to go back and see things from your point of view. Once you have a place you can put it down, you have a place that you can let things go. When some are a little too much, simply take them out and burn them. Let them go, literally go up in smoke. As they do you can release it and get on to forgiving.

Forgiveness: You will need a lot of this tool. Prior to reading this if you are anything like me you will have done a tremendous amount of damage to yourself and those you love. You are not responsible for this, it is a matter of sheer physics. As we spiral down into our own place of self loathing, the place of self loathing creates a dynamic that we simply cannot control on our own. As we go on we lash out at those closest to us. You will need to forgive yourself for what you have done. The funny part is that those family and friends already know your disability and they love you anyway. Now the hard part is forgiving yourself.

If you use the tools above you can begin to find a place in life that you can function. It won't be what it was, it won't be what you thought, but it can be a life. Not a 40 hour per week job life, not a things will go back to the way they were, but a life.

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    • denise.w.anderson profile image

      Denise W Anderson 

      2 years ago from Bismarck, North Dakota

      Wow! It sounds like you have gone through the wringer! I didn't realize that the brain does not heal, and that a person who has had brain surgery would have these kind of issues. It is a real eye opener! Now I can understand what is meant by traumatic brain injury and why it is such a problem.

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