Chasing Normal: A Guide for the Newly Disabled

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Silently Screaming

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Okay, you�ve just been diagnosed with a new disability. Maybe it�s Multiple Sclerosis (MS); perhaps it�s the result of a car accident; maybe you�ve developed chronic fatigue syndrome; maybe you have a combat injury or a permanent work-related injury. Whatever the disability is, the result is the same. You�re probably terrified and it�s likely your family and friends are too.


We�re not talking about �How much is the Visa bill?� kind of scared. We�re talking about bone-chilling, mind-numbing terror. This fear is related to concerns about keeping your job, caring for your family, and maintaining your own bodily functions. And, what do you do about your hobbies? This fear can cut to the core of who you are. It can make you wonder if sticking around to see tomorrow is worth it. Your fears can be so big that they become too scary to share with your loved ones because you don�t want to scare them.


Your family and friends are probably afraid of all of the same things you are. They�re aching to take it from you. Whatever your particular disability is, they, like you, probably have had little or no exposure to disability. They�re trying to be brave for you�just like you are for them. So, everyone holds it in and silently screams, hoping it passes.


Having this kind of fear is okay and �normal.� It doesn�t last forever. It just feels like it will. Good or bad, life forces us to get on with it. We can�t stay frozen in the doctor�s office or lie in the hospital forever. One day follows the next, and we have to go home and take care of life�s details. We have to face the sunrise even when we�re in shock.


More than likely, the fear will come in waves. Honor it when it comes. Don�t belittle yourself or it. Let yourself feel an understandable reaction to having your world turned upside down.


A very wise woman once told me that fear is rarely constant. It rolls in and out like the waves on the lake. We�re just unaccustomed to feeling something so strong that it seems constant. She said that if you allow fear and grief to roll in like the waves, they will certainly roll back out again. However, if we build a breakwater and try to stop the waves, they batter that wall mercilessly because the wall interferes with their natural path.


Our �breakwater� can be made of denial, physical tensing to ward it off (like clenching our jaw), burying ourselves in pills, alcohol, food, sleep, etc. We live in a society with a lot of control freaks. We often try to control every aspect of our lives. A disability teaches us that control is a pretty illusion that we have chosen to believe is real. We must release the need to control, especially now. It is the only way to survive these waves of fear. I urge you to stop building your wall or �breakwater.� Your attempts at controlling your fear will only exhaust you. Let yourself feel the fear and know you�ll move through it. It�ll be back, but know you�ll survive fear�s future visits too.


During these times, be kind to yourself and find things (other than addictions) to comfort yourself. Talk to a friend or a professional; take a bath, or a long nap. Allow yourself some space and some quiet time. Allow yourself to cry. Allow yourself to feel what we former control freaks would�ve never allowed ourselves to feel before-- honest emotion based in the new and scary reality of the life we now have and never expected.


I�ve had trigeminal neuralgia for six years (it only seems like a lifetime), and I still have bouts of fear. I fear the bouts of pain. I fear trying to maintain my job through the next attack. I fear being a drag around my husband.


So let�s deal with truth. Fear sucks! It�s a rotten emotion to live with. Fear is the WORST foundation for decision making.

Fear is not reality. It is our confused perception of things. It is not reality.


Never, never make big decisions from a place of fear. Let me say that again. Never, never make decisions out of fear. When a wave of fear has rolled in, it�s hard to even decide if you should have tea or coffee because it�s hard to think, period. So focus on breathing through it, trust it will pass, and NEVER allow yourself to make an important decision until you�re calm and grounded.


Some types of big decisions that should not be made when fearful are:


- If I can�t control my bladder, how can I possibly keep my job? Maybe I should quit my job so I don�t embarrass myself.


- Does this injury mean I can�t have sex anymore? My spouse won�t want me. Maybe I should file for a divorce.


- Does this embarrass my children? I won�t go to their school activities anymore to spare them the embarrassment.


- Is there a way to live happily with this problem? Maybe I�ll kill myself.


These thoughts may roll in with the waves of fear. Trust they�ll roll back out and don�t act on them. Instead, write them down and discuss them with your doctor. Find out how others have dealt with these same fears. Maybe there�s a support group in your community for people with your same issue. If there isn�t a local group, try to locate an on-line support group.


You might spare yourself a few bouts of fear by finding others with more experience and learning how they�ve coped. Seeing how others have survived might help you to accept that surviving is possible, that others have maintained jobs, families, sex lives, and have found that living is worth it. Once you know it�s possible, the next wave of fear won�t be quite as daunting.


I have always known that I was a lousy decision maker when I was afraid. I�ve always �bargained� with myself as a coping strategy. When I�m in fear and think things like �I can�t handle this anymore. I should quit work� � I say in my head �You know you make lousy decisions when you�re afraid. Let it go and pick it up again in a few months.� This strategy has saved me from many poor choices that I would have regretted. I�m still working; I am still happily married; I�m still alive. None of these things would be true if I had made decisions based in fear.



        It�s ok to be afraid

        Grief and loss are part of the healing process

        When fear or grief roll, in trust that they will certainly roll back out

        Never make decisions from a place of fear