October 10, 2006

Nine Years Later

October 4th, 2006 is the anniversary of my son's diagnosis. It has been a rough year for me physically. Two trips and falls, torn knee cartillage, surgery, physical therapy, and just when it was safe to come out of the water the second trip and fall resulted in a broken shoulder.

My house is empty now, except for my husband and myself. I have had a lot of time to think and feel:

There can be life after the diagnosis of schizophrenia in a loved one. Things will be normal again one day. You will adjust eventually. It just won't be the same normal you once knew. It will be a new normal. It will be YOUR new normal and no one else's. Efforts to hurry or force the adjustment will only drain you. It will come in it's own time. Each individual's own unique set of circumstances delineates far too much to this end to ever lead any one to believe there is a defined length of time. So try to be easy on yourself. You have more than enough to adjust to.

For some of us it is a roller coaster ride. For others, it feels more like a merry go round that never stops. But you can learn to to hold tight and to tolerate the ride. You can also choose to get off. Everyone has to make their own choice as to what is right for them.

Try to process your fear with the same compassion you would for any one else. You will be dealing with a lot of it. Yours, theirs, your family's. Remember it rears it's head in many forms: anxiety, panic, paranoia, anger, fight, flight, freeze or feign. Remember to 'act as if'' when you find yourself wanting to surrender to self sabotaging behavior. Get yourself through those moments somehow with as much grace and dignity as you can muster. Remember that fear is the underlying emotion of so many of the emotional states you and your loved ones will find yourselves in. Fear is always the underlying form of anger. The definition of guilt is fear over past events that did or did not happen. The definition of worry is fear over future events that may or may not happen. Whenever you are feeling guilt or worry, you are either in yesterday or tomorrow. You are not in today. Take some deep breaths, in slow and deep, out slow and full. One day at a time. One moment at a time. One breath at a time if that is all you can handle.

Don't fall prey to using this as a license to only focus on today. Plan for tomorrow. Inventory yesterday. Don't ignore the past or the future. Just don't let yesterday and tomorrow eat up all of your todays. Schizophrenia takes planning, forethought, goals, and education. Learn as much as you can about the disease, the treatments, and the services available in your area. Plan things with your son or daughter. Give them the gift of knowing they have a future. Honor their past.

The system of care itself can feel more like a revolving door. You will discover far more of the responsibility falls on your shoulders than you ever imagined in the beginning. But you can grow shoulders broad and wide and learn that you are also much stronger than you ever knew. Wisdom can come in droves, with moments of clarity and "Ah Ha's!", only to be interrupted with periods of total confusion, frustration and stress. But you can learn to become a pro at finding needles in haystacks. Never stop demanding the system do it's job!

This disease can mop the floor with you if you let it. But don't. Remember to take care of yourself. It may feel as though you have nothing more than brief stolen moments left to yourself. But steal them any way. Never give up trying to find time for you. Ask for help. Get those time out's. They are necessary. Take a hot bath, listen to soothing music, or rock the house till you feel like dancing. Whatever works for you. Find some way to put the focus on your needs.

It will feel difficult and uncomfortable to socialize at first. But socialize any way. In many ways this disease is a jumping off point in your life. Many beliefs, perspectives, priorities and even friends will re-arrange and shift guided by the awareness you now have. Schizophrenia changes everything, including us. You'll feel like the new kid on the block a lot of the time. You will find yourself gravitating in new directions in many areas of your life. You will discover there are people with hearts of gold who have been waiting to find you. Friends who will listen, understand, support, and help you. Friends who know how you feel. And you will discover others still who are just waking up to the journey you are already traveling. Bring them a covered dish.

Take the time to grieve. I can not stress this enough. It can paralyze you with depression if you don't. Cry, sock a pillow, kick the couch, say it out loud, make someone listen, beg and pray for your miracle, whatever it takes and as many times as it takes. Refuse to be ashamed of grieving your losses. See a therapist if that is the tool that carves out enough time for you. If you can, take medication if the depression or sleepless nights don't lift. Schizophrenia hurts.

Remember to catch your loved one succeeding, no matter how small and insignificant the progress seems by comparison to their former achievements. Any forward movement is big and takes gargantuan effort on their part. Any break throughs are cause for celebration and fortifies hope.

Don't blame yourself. This really is a disease. Although it seems impossible at times not to, get yourself out of this stinking thinking by reassuring yourself it is not your fault any more than diabetes, a brain tumor or any other disease is. Don't buy into it when someone else implies it. Recognize ignorance for what it is. Part of the human condition. Walk away, shake it off, give it back, or .... if you're up to it ..... take the time to educate and raise their consciousness.

Find a hero. Mine is my son. My losses, fears, lessons, successes and failures, and roller coaster rides all pale in comparison to his. He is the strongest person I have ever known.

Never give up. Never, ever give up. And if you do, remember .... you can always change your mind and start over. You still have choices. No decision we ever make is carved in stone. Everything can look better in the morning. All it takes is someone who knows how you feel. Someone who gets it. Someone who can offer you hope. Who knows what lies in store? None of us do. A cure, or a better medication could be just around the corner.

And if you succumb to the devastating loss of your loved one through suicide or victimization, remember we all know how valiantly they fought to live with this wretched disease. Find some measure of comfort in knowing you are not alone in this regard. They will always be with you in spirit throughout the daily makings of your survival until it is time for you to leave. Honor their lives and try to make your own difference in a world that can seem so detached from people who suffer.

Always remember, no matter how lonely this journey can feel, even when the people you count on the most let you down and disappoint you, YOU are NOT ALONE!

Posted by Doe at October 10, 2006 03:11 PM


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