Walking Tall. Standing Proud.

I walk slowly down the path. Myrtle Mae and I are headed to the bus station. This path isn’t always clear so I’m glad that Myrtle Mae is out guiding me and protecting me from dangers I can’t see. It is more than that though: Myrtle Mae warns people I might not see them.

Five years ago I did not walk tall. I was in fear of the night, lived in fear of getting home from a strange destination and Amsterdam was a nightmare to navigate. I didn’t think there was hope or help.

I walk carefully but proud within my life. I can hold my head high because I deserve to. That is when I pause and remember the many who feel that they aren’t deserving of holding their heads high. I think of the fight I waged and memories come back but other thoughts come back as well.

It began when I was 10. I wanted contact lenses. The doctor said “NO” and wouldn’t say any more. The next year I asked that same question and again I was told no. It was then that I became mad. I remained mad until 13. “OK you tell me I can’t have contacts because of my nystagmus. If I come in here next year and you can get enough of a measurement THEN can I have contacts?” Sure, he says. I go home and for that year I close myself off in a dark room and shine a light into my eyes. I do it enough to calm my eyes.

Then the next year the visit was one that changed my life for several reasons. First: The doctor pointed down the hall and told me who I needed to see. Second: As a person with disabilities I took control of my medical life. I took control of my entire life at that moment. It really was my body, my life and I was in charge.

I began to stand up for what I knew I needed both medically and educationally. I had begun the process at 12 with my education but it was at 14 that I really got down to business.

Many years have passed and I’ve been pretty quiet about and within my life but the desire to stand for myself and others has never faded. My desire to speak for the disabled has not gone away. Recently I woke up wondering why I’m not making more noise.

Did I get lazy? Have I grown complacent? Did I get side tracked? Maybe it has to do with the learning I’ve been doing. Maybe it was my own journey that side lined me. It wasn’t lack of passion was it?

No. it was life, the journey, learning, growing and calming in a new way. It was gaining an understanding of some needed issues and mourning the damage that someone with a disability has to come to terms with. Yeah, it was “life, the universe and everything.” (See Douglas Adams Hitchhiker series)

For me this latter aspect of life began when I was 21. She was a nice internist and I had to ask the question. Logically I knew the answer but I still needed to hear a medical person tell me what I knew intellectually. Yes, you can conceive a healthy child and it won’t be affected by your congenital issues. For a woman with a disability this is a real concern.

My 20’s were spent exploring, learning and trying to figure out how to pull off my 30’s. Could I really do, with my life, what I really had envisioned at 16? How would I do it?

When you have a disability you have to know how to knock down the fences and walls that stand in your pathway. You have to carry a sledge hammer and hit hard. You have to understand that 3/4 of the time you are going to be challenged. You have to learn to fight without apologizing. You have to cultivate a deep inner strength.

Life is never smooth. Life has many a detour along the way. Abled or otherwise life is going to present you with some nasty curves and bumps in the road. So sometimes you have to walk slowly down the path and other times you can run.

No matter when you get hit with the disability, either at birth or later on in life, there are some common issues. You are going to face depression, doubt, fear, uncertainty, challenges from others and challenges within yourself. To move through life you and you alone, are going to have to tackle each one of these charming little obstacles. Society will be a giant obstacle and your family might also be an obstacle. YOU CAN WIN provided you learn how to do so.

You are going to have to come to terms with patting yourself on the back for a job well done. You are going to have to celebrate the tiny victories along with the great victories. You are going ot have to learn to stand or sit tall and stand or sit proudly in life. I won’t lie it isn’t easy: it is worth it though.

I have a question for my readers. You know: all of you who prefer to read and not say anything: What is it like to be you? What is it like for you to travel through life with your limitations and your talents? What is it like for you to walk tall and stand proud?

Posted in Disability and Life | 2 Comments

Being In The Room 2 of 2

A few of my readers have contacted me off blog post with questions and this second post is meant to focus on the area of support and maintaining a positive outlook when you are in the room with a person that is stuck in the tube of depression. This is long but worth it. (In my humble opinion.)

One of the issues with depression is that there are many who distance themselves and few who are courageous enough to enter into a support role. This can be a really dark lonely place to be in with someone. Depending on the variety of depression that is being dealt with there can be many types of dynamics occurring.

Here are some suggestions.


Be a friend. You can’t fix it or make it better.
You CAN urge them to take steps to get help. Know that this is easier said than done.

Above all else you are a friend first. Your love and caring for this person is far more important than anything else and they need to know that: no exceptions. This doesn’t mean that you fail to set boundaries with them.

There are several reasons this is hard to do. a) The depressive brain is not thinking logically. b) The person with depression might behave in an aggressive manner that shuts you out because they are fighting to protect their dignity, their space, their denial or their uncertainty about what they are witnessing within themselves. This is just a fraction of what might be going on in their head.

YOU have to decide if you care enough to push through the facade. Sometimes you act out of love and you find that it is more than you bargained for. Once you are in that room leaving can do a great deal of damage so hang in and learn how to be a good friend.

Recognize that the depression will most likely speak louder than your family member or friend.

Remember the laundry pile? You are dealing with somebody who has switched off logic. While their brain might tell them on some level that something is not right they may not be in a position to make the connection.

Something called psycho motor retardation is occurring in their body. This means that physically and mentally processes slow down. They can’t think at a normal rate and movement may also be impaired.

They may or may not know what they really need. You will have to ask questions. Ask slowly; don’t ask them several things at once. Their ability to process answers may be impaired due to the psycho motor retardation.

At first they may not have the energy to think about answers but as you persist over time they will open up. They might not believe that you are taking an interest in them and might push you away: stand firm. You are doing a great thing but remember their brain is sending inaccurate information. Reassure them that they are worth the time and that you really are there because you care about them.

Once you break though and establish some trust in this area things will change. You’ll know this because they might call you and tell you they are having a bad day or that they need a walking companion. It could be anything. They might admit to some of the chores that they really struggle with. Offer to help out and follow through.

Sitting in the room.

You are now with them, they know you care and they are willing to accept your support. How do you keep yourself healthy?

Reward yourself!!!! Dig into your movie stash and watch a favorite film. Read a book or article. Pursue your hobby. Do anything that lifts your spirits under normal circumstances.

There are times when you might need to talk and let it out. Make certain that your talking partner understands your need to process your own feelings. Just as you can’t fix the depression for your friend you don’t need to fix your feelings about being a support person.

I’ve mentioned setting boundaries. Often people think that setting boundaries is about saying NO. It is also about saying YES and compromising. It is about knowing and understanding when you can say I need to finish x y z. There are times when hearing the urgency in their voice will signal a decision that it is needs to be heard right then.

You can’t force anyone to do anything.

As much as you might want to force a promise out of this person you can’t. They’ll promise you only if it is their choice to do so. If you expect them to commit when they aren’t willing it will cause both of you to have stress. It will strain the relationship and you will burn out.

Now that the above paragraph has been stated firmly I’ll explain further what you can do. I’ll explain what you need to know in order to keep your head together.

Professionally I want to keep people safe. If I have a client who has the energy to both create a plan and carry it out that client is going to need to be in a safe place. That might mean a hospital. I set very firm boundaries with my clients.

George is my friend. George and I have a deal. George has promised me that he’ll talk to me before he would carry out a plan. The problem with the type of depression George has is that his mood swings are sudden. George knows that if he were to suicide it would hurt me and others.

I’ve had to come to terms with the fact that you can’t stop someone if they are really hell-bent on doing it. That is also part of the depression dynamic. It really is a no win situation. The thing is that by knowing and accepting what could happen I am less stressed about it. That doesn’t mean I’ve stopped caring but it does mean that I’ve come to a peace about how I deal with the threat of suicide. I can listen and try to understand.

I’ve known multiple people who have committed suicide. I’ve shed tears and yelled and screamed and I wish every one of them were still here. I’ve also realized that for each of them they felt there was no other option. This has caused me to listen to people seriously and to respect the power of depression in their lives. This is why I have the policy that I do towards my clients.

Take what your family member or friend says seriously. When they can’t move and do much is one thing but when they can move and carry out a plan that is a time for action on your end.

Support Teams

You shouldn’t support alone. The ideal would be to urge your friend or family member to seek professional help. Build a treatment team. If at all possible find someone local. Find a professional that works with depression. Ask around because depression is common and someone you know might be aware of that profession person who helped them. Some are better than others. If medication is an option know that there are some psychiatrists that are better than others. Here are some tips you might not find on other sites:
• Anyone who won’t take the time to do a proper intake and evaluation is out. I once saw a psychiatrist take two hours to do an intake with a man. Because of the time he took the doctor was able to look at this man and his depression from a completely new angle. It made a great deal of difference. It might take several visits to really understand the issues. This is also true in terms of locating a good therapist.
• Does your friend or family member want you involved in the treatment process? Sometimes you or others must to be contacted if the need arises. I’ve had family members contact me to report urgent psychiatric situations. When depression and suicide are involved I can only ask for this to be in place, and we talk about it before it is put in place. This is a relationship and can be negotiated. So as a therapist I have signed release forms before I speak to someone of my clients choice.
• Does this professional work in a holistic manner or are they only focused on their particular slice of the therapy pie? If the therapist or psychiatrist takes a more holistic view be prepared to support this. They’ll most likely start with the diet and exercise. People with depression don’t eat well and often they don’t have the ability to exercise because of low energy. The list goes on but these are two basics. When the time is right both eating and exercise should be addressed. You, as part of the team, may have influence here. Most folks like a good meal. The exercise is a wee bit trickier. That will take time. George is into food because it is one thing he can enjoy.
• Getting a gym membership might not be an option. How can you exercise? At first it might be that walking or funning around the house is all you can do. Then as things pick up walking or running in front of the house and building up to a walk around the block!!!! Keep it simple and low energy. George lives near a foot bridge so we walk and feed the duckies. This activity works on multiple levels. Get creative. Walk a neighbors dog for them because doggies should be waked. Find something that is easy for the depressed person to do. They might have insight into this as they become stronger in dealing with the depression.

I haven’t mentioned it all.

I’ve only scratched the surface here. This is meant to get you thinking. I hope it does do just that. Get in that room and stay there and become a person that says yes to being a true loved one or friend in a time of need. You will be thankful that you did this for them and when they finally pop out the other side of the tube it will be a grand celebration for the both of you.

Posted in Depression | 2 Comments

In the Room 1 of 2

I’m posting this as an update. I realize this is a long post but read and learn. George is on new medication and is doing great. It isn’t a perfect fix but it really works for him. I’m also posting this as a 1 of 2. I’ll be adding to this blog.

Today I discovered something about my princess Penelope. She needs me to hang around while she eats. The reason for this is that when ‘Roo and Bob were alive I supervised the eating process so that they did not “mooch” off of each others food. I guess she got to like the secure feeling my “anti-mooch” presence provided her.

After Bob died I took to placing her food down and letting her eat. I’d go about my business and I thought everything was fine. It wasn’t.

This morning when I fed her I stayed in the room and sat at the table. She’d eat and then come over to see me and then return to her eating. Just like a two-year old!!!! I thought about this and realized that in her time of adjustment my being in the room while she eats is part of her process of building a new life. For 15 months I was in and out of her daily life. I’d better remain present. She needs me to be in the room.

Lately I’ve been thinking about being in the room for those who need us. It isn’t always easy, and sometimes it can be frightening to watch someone you know and love suffer either physically or emotionally. How often do we remain in the room for those that need us? How often are there many people in the room? Not enough. Sometimes people run from friends and family because they don’t know what to do or are just scared. They run from rejection which can be very real. People turn from the room because of the anger and resistance that are present. In all honesty who needs any of that anger, rejection and resistance to help stuff? The person in the room needs you.

Yesterday I had a talk with my mother and she asked me about someone who I am presently “in the room” with. I’ll call him George. Her comment to me was that George is really suffering. Yes, he is and I hurt for him. Both my mother and I have known those who have suffered in life and it is hard not to hurt when you see this type of emotional pain. Seeing this type of pain isn’t a highlight of life but it is what life is made of and I have chosen to not run from it.

George is suffering from depression and despite the fact that there is a treatment team in place for him he feels very much alone within his life. He feels many things: some are rational and others not so rational. Depression is a blood sucking alien that distorts every aspect of life. For some there is no escape from its daily ravages that depression can cause. George is one of those people who, despite medication, is not helped as much as he’d like to be helped.

Here is something I found to be very valuable in my process of remaining in the room with George:https://www.youtube.com/watch?v=NOAgplgTxfc&index=6&list=PL4C47FE7B6D5BFE1A (Full Lecture) This is a great lecture and explains depression well, It is well worth your time to listen and learn.

Staying in the room is challenging, heart wrenching and at times frustrating. It takes work on my part to remain supportive and present. I remain a friend to George because I am committed to our friendship. True friendship entails being there for the fun, the good, the bad and the hard stuff. True friendship seems to be a dying art.

We each know someone who needs us. If your circle does not include such a soul look deeper into your circle and you will find your own George or Georgina. If you say that you have looked and there is no person with needs then ask yourself WHY? I promise you there ARE people who need you this way in your life.

What George teaches me is to show compassion when it is hard to do so. He teaches me to remember that there is hope. I learn each time to search within myself for understanding. He teaches me that I can’t fix it but that I can listen. He has taught me to be a better therapist. Knowing George has enabled me to look at the way I deal with my own struggles in a more honest manner.

What I hope George is learning is that I will not leave the room. What I hope George will learn is optimism in his daily life. He might never be completely rid of the depression but it can be far better than it is now.

We all know a George. This is someone who struggles with something that causes you to question what you can do for them. Sometimes the feeling is that you don’t know what to do so you do nothing. You feel embarrassed or clueless and feel as if you can’t relate to this person. You might not want to admit that you are truly ignorant about what to do with someone faced with a particular challenge in life. Don’t walk away!!! There are better ways of dealing with those in need. There are things you can do to learn how to remain in the room.

Getting into the room may not be easy. You might find resistance at first. That is because there is going to be disbelief and shock and skepticism inside. At first you may not be welcomed with open arms. Keep your heart in the right place and things will happen.

Here are some things to start with and to keep in mind when entering the room. It isn’t a complete list: it is meant to get you to think of what you can do for someone.

If you don’t know what to say at first be loving and kind and tell them that you aren’t certain of what to say. Tell them that you will listen a great deal. The fact that you care enough to be there is a grand beginning. Once you have started to earn their new-found trust as someone who will remain in the room with them offer to help. Ask them what they need.

One woman I know sat for hours and took some needlework while her friend sat, slept, and then wanted to eat. Just being there opened a door so that her friend could learn that there was someone who cared.

People with depression suffer from low energy. Don’t challenge them physically. Let them set the pace. While you can see the benefit of getting out and walking the thought of putting one foot in front of the other might be too much of a task at first. Reassure them that it can get better. Don’t expect them to move towards anything rapidly. At this point in time my friend manages to walk for five minutes on the treadmill. That is all he can do and it is enough for him.

Try quiet things. Keep it low energy. Sit and talk. You might try giving them a back rub (if they are comfortable with you doing so) to help stimulate the body. Music and other quiet soothing activities are things that can help. You might discover other things that are easy and low energy. Don’t try to over-stimulate someone let them set the pace. Think about doing things that take little concentration. People who suffer from depression have brains that are often offline.

Meals are great. Lack of energy and lack of ability to keep nutritional things on the table is an issue for many with depression. When your brain and body aren’t working right the ability to make good choices becomes difficult. Easy, fast and low energy consumption is how many people with depression function. Grocery shopping takes time and energy. Everything takes energy. Thinking takes energy so a depressed person might try to avoid activities that entail complex thought processes. Cooking and cleaning are two such activities.

Commit to being there. You might get hurt. You might get told to get lost. You might wonder why you bother with this person. You might want to leave: don’t leave. The more you listen and learn the more you will know what to say to your friend when they feel as if there isn’t hope. Don’t promise them things you can’t deliver. Deliver what you say you will do and be consistent about it. If you are honest with them they’ll be honest in return.

Your friend may be really embarrassed. This isn’t easy for either of you to deal with. Your friend may be feeling embarrassed with the situation. Your friend might not be totally honest about what he or she truly needs. They may feel as if they are not deserving of time. Your friend might think that the only way they are going to get through the ordeal is to go it alone. Let them know that they aren’t alone by showing them that you are with them.

Depression sucks the life out of its victims. The depressed person may attempt to drive you away by creative means. THAT is the DEPRESSION talking. Realizing that you are actually having a dialogue with an illness will make hanging in there easier to deal with. You might not be thanked at first but hang in there as eventually the tide will turn.

You may see how important it is for your “George/Georgina” to get professional help. They may understand the need for help as well but might be too worn down to help themselves. Offer to help them get the help but make certain that they are still in charge of the situation. They might need reassurance, they might be scared, and they might not be able to understand how bad it really is. Point things out gently and don’t push. If you are kind and gentle you will have an easier time being successful.

Switched off brains.
Imagine that you have a laundry pile that needs doing. You walk by hurriedly because you are running out the door and can’t get it into the wash. When you return home you go put the laundry in the machine and simply do the wash. That is what normally happens. Now in the mind of someone who is really depressed this is what happens: they see the pile of wash, walk by and think oh I must do that wash and I will do the wash. The next day they still see the wash and think the same thing. This goes on for sometimes until a crisis or something else triggers the wash getting done. In simple terms the brain is switched off. One of the plusses regarding medication is that it can switch the brain back on.

I am just scratching the surface here but my goal here is to get you to think of remaining in the room.

Briefly I want to talk about suicide and medication use. Suicide happens because there are not resources to bring to the situation. Most people want to live and move on. Most people, even when they do have feelings of suicide, don’t want to act on them. This does not mean that a person won’t act but rather that they are driven to act because they feel that the resources have run out. I’ve known family friends who did act. They are now beyond my voice. For them I wish that there might have been a way to help. I wonder what went wrong. What could have been done to bring the needed help to each of them?

The most dangerous time during depression is when a person has the energy to act on the impulse to suicide. It takes energy to kill yourself. A person with a lack of energy can only think about a plan but once the energy rises they can carry the plan out. You might want to know what your friend is thinking as far as a plan and be prepared to “suicide proof” the house. Make a protection plan in your mind. Don’t be afraid to ask directly “how suicidal are you right now?” I’ve asked this at times and been told what I needed to know. George says that my asking lets him know I’m in the room.

Medication is a tricky thing. It isn’t the answer for everyone but for those that it works for it can be truly helpful. Medication is a process of hit and miss and it takes some time to get it working well. A good psychiatrist will work with you to find a good drug or combination of drugs. The best results for treatment combine medication and talk therapy. Don’t expect the problem to disappear in a week to six weeks!!!! Be gentle with yourself and work with your mental health professionals for the best possible outcome. Think of those involved as part of a treatment team. Help your friend to understand this and to be gentle and realize that it will take some time to see results.

Penelope is now sleeping here on her blue table by the window. She seems content to sleep and enjoy life. I smile at her lovingly because she is acting better and feels my love for her. OK, I think she does all of this. Meanwhile George continues to learn about his depression and how he can strengthen himself. Life does go on and each day that I am in the room with him is a day that is good. Now if it would only rain chocolate. AHA there’s a thought.

Posted in Depression | 1 Comment

Endings: Short, sweet and to the Point

Yesterday at 4:00 in the afternoon I left the rehab center. It was the final visit for all rehab services. It has been an interesting several months.

While I improved in all areas but one and that was standing on one leg, my scores were higher and I feel good about the time spent there.

Something that helped me was my time at the Loo Erf. What the Staff taught me was that it’s all about how you approach any task. I feel like that helped me to understand what my real goal was.

I no longer fall down because I’m doing the things for my health that enable me to function in the morning. I’ve learned to ration any given task to about 30-45 minutes and I’m OK with that.

I’ve returned to kitchen work, washing dishes and cooking. Once again enjoying being able to contribute to the household in such a simple manner it thrilled me. (OK so my life hasn’t been exciting lately.)

I’m walking again in a normal fashion. In case you are wondering the Dutch don’t mess around: they get down to serious business. I like that.

The most amazing experience I had while there was one that occurred at the end of my physical therapy. We were sharing a room with another therapist. The therapist and her patient were playing Badminton. I’m sitting there watching the action and I turn to Floris and say “I wish I could do that!” He asks why I can’t and I tell him that I have really terrible hand-eye coordination. Hmm he says nothing more. Our next session he takes me to this large room and brings out two normal sizes rackets but the shuttle is a yellow balloon!!! I spent the majority of our 30 minute session successfully hitting the balloon. When I left the session I exclaimed to Jon, as a delighted child might that I’d played modified Badminton. I was so happy and proud. Now we have a new activity to do together.

In a strange way of everything I learned there the Badminton is what I’ll cherish the most.

It is nice that I can think better, put my thoughts into a nice blog piece and understand that things won’t ever be like they once were but for one 30 minute time in my life I was given a way of doing something I always wanted to do: hit the shuttle. Thank you, De Trappenberg.

Posted in Her head | 1 Comment

The Journey Begins: Random Thoughts

I’ve had my first week at the center for rehab and it went well. Since that I’ve had several more weeks all of which have gone well. I like the rehab center: I ask and they attempt to grant my desires. Most of the time they just send me my weekly appointments, I show up and sit at the table in the lobby and a kind therapist shows up to take me to work.

I notice that I’m not walking with Myrtle like I should and I begin to focus on this. I feel more secure walking holding Jon’s hand but I know I need to walk alone. Maybe I’m feeling insecure but the therapist says I’m not limping. So why does it feel like I am? I’m walking slowly I know It might just take time. And as the weeks go on the feeling that I’m limping diminishes. My desire to use Myrtle returns.

One Fell Down

All seems to be moving along well and I’m feeling better UNITIL I fall down in the bathroom and almost pass out. OUCH. It was a nasty little fall and I tried to stop from tumbling over but I couldn’t control the fact that my legs went right out from under me and the toilet paper roll broke my fall. OK you can laugh because it is funny: the toilet paper broke my fall. I was lucky that I didn’t hit my head on the ground. The bump that would have caused….well another big house adventure didn’t happen thanks to the TP roll.

Oh have I mentioned that the term “big house” it is humor for hospital. Well if I haven’t it is. And if I mention it again someone remind me by whatever means possible.

Hopeful

I’m walking on the treadmill again and I feel like a “Gail on the wheel.” I’m not going fast but I’m walking 10 minutes per day now and will build on this time five minutes per week. The idea or so the PT says is to get my unfit self fit. I want my heart rate higher while moving and my resting rate at a nice quiet low healthy purr.

When I started this process in the gym I had to laugh because the numbers were horrid. I couldn’t help but laugh I was in pathetic shape. Five minutes on the treadmill was hard work. I was embarrassed. I am determined to become stronger. I’ll settle for endurance first and fitness as it comes.

I’m also building arm and leg strength. This is coming along slowly but I am hopeful that with time I’ll gain muscle strength and maybe even have some muscle in my arms. I want to work hard for myself. This is about me myself and I only.

Time

I don’t really notice the changes on a daily basis yet but I am noticing that there are things that change week by week. I really want to do more each week. However the depression that sets in after a stroke is my one challenge to time. I don’t like it and I have to fight hard for what I have. Time is a trap that can discourage the soul. I’ve never felt quite like this. It means learning some new skills. I have hope most days.

Travel

Now I understand!! You know how you shouldn’t put a cat in the car unless they are in a case. It is because they freak out watching the real estate slide by: that is what travel is like after a stroke. Sensory overload is a real issue both in the home environment and out in the rest of the universe.

In September I spent part of my insurance money in the vision area on some great dark prescription glasses. At the time I just wanted them as a useful tool and back up. Now I’m glad I got them. Wearing them out in the universe stops the flood of information from entering my brain. The world becomes blessedly quiet.

Yesterday I rode the bus for the first time since my stroke and wore the glasses even though the darkened and rainy skies would not require them and my energy level was much better. I think that the use of the insurance funds was worth every Euro. And my glasses look great if I say so myself.

Energy

I’m feeling tired. I’ve been thinking most of the morning and I think I need to walk. I used to be able to do this for hours but not now. Variety is a must for me. I think I’ll visit the kitchen and find some work to do that doesn’t require me to think and type and focus on making sense.

Jon came down with the flu and I am the nurse. I wish I had more help because his being down isn’t fun. You never know how much you take things for granted until you don’t have them around. Good thing I’m learning to take it slowly. I just have to make it to dinner tonight. I think he can have soup.

This has been a bit of a ramble but that is where my head is. Happy holidays everyone. Better get the chores done.

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