Mental illness, it could be you

shadows of the past may come alive to help us be better people

“Hi,” the woman said shyly.  “I’m calling about a butterfly garden.  I saw your ad in the paper.”

More than a decade has gone by since I received that phone call.  I still remember how I felt.

“I live on a fixed income due to a disability,” the woman added.  “I was wondering if I could get a small butterfly garden and how much that would cost.”

I remember how I felt then, but the way I feel now is much more powerful.  I feel terrible about the way I handled that call.

The woman told me where she lived.  I had heard of the place, but didn’t know much about it.  I knew only that the people who lived there had some type of mental problems.

I talked with my gardening mentor who encouraged me to go see the woman.  I wish I had taken his advice.  I can’t remember who else I consulted with, but I was most certainly influenced in the other direction.

The woman called several times telling me how much she loved butterflies.  I told her the price for a small garden.  She explained that she received her check each month and asked if she could make monthly payments.

People said things like, “those people who live there are crazy,” and I vaguely recall one person telling me that I would be making a mistake to get involved with someone like that.  I concluded that the woman wouldn’t be able to pay like she said she would.  I assumed several things that today I am not proud of.   I chose not to meet with her.

As I write, I really can’t believe that was me.

I wasn’t going to write about this memory when I began this post, which is one of my many challenges in writing.  I’ll start a story or some type of tale and the next thing I know, I’ll be back in time, ten or twenty years into my past.

I wanted to tell you about my dream of creating a healing garden for people fighting and living with mental illness.  A place for healing and community to happen.

I wanted to tell you about an outdoor bed of hay framed with sunflowers and chocolate cosmos laced around the pillow shams.

Sometimes the past meets the present and I get lost somewhere in the middle.

The apartments where the woman lived is a thriving community today, as it was when she called me all those years ago, back when life was much easier for me.  Back when I thought the problems those people had would never be ones I would face.  Oh no!  Not me or my family.

I was terribly wrong and completely ignorant.

Mental illness doesn’t discriminate.  It can strike any person, any family and in any place.

Ten years after I turned down the woman’s beautiful and brave request, I found myself at the same apartment building where she had wanted her little butterfly garden.

I was there applying for my adult son to get an apartment in that community.

I had forgotten about that phone call until one day when I went to visit my son there.  Several of his neighbors came outside.  We walked around the building together finding many places where we could plant, of all things, a butterfly garden.  The memory slapped me in the face.

I realized that my son was one of those people.

My bright intelligent son who had superior verbal skills by age three, was a good student other than talking too much from being bored, was in a grand way always enthusiastic about life, winning school awards in science and later in kayaking, was struck with a mental illness.

Today, I am a woman who must sometimes say, “I live on a fixed income due to a disability.”  

Today, I realize, I am one of those people too.

Turns out we are all the same and always were.  The differences I imagined came from cultured misconceptions of immunity derived from ignorance and stigma.

Thank you for visiting my blog,

dogkisses.


Breathe out…

Sometimes No Sometimes YesShe’s coming and it won’t take her long to get here.  I have about an hour left.  I didn’t have the courage to say no.

She’s my mother and I love her.  She surprised me when she called to say she was packing.  My gut screamed out at me to say no, but I couldn’t.  I tried.  I called her back three times.

“Are you sure you want to come?” I asked her.

“Yes.  Are you sure you want me to come?” she responded.

“Well, I’m sick,” I told her.  “I’m not in the best mood either you know.”

She says she understands and as much as a part of me wants to say no, obviously another part is saying yes.

I have a hard time saying no, which is why I love the icon my friend, Leslie, at IconDoIt, the blog, created for me.  The image was the top rated media image I used in my blog in 2010.

I love the “No” icon and saying no in 2009 saved my life.

I need to print this icon on a very large sheet of paper and hang it above my desk, which sits in the center of my small home.

“If truth be known,” a phrase my mother uses often, I need to be in a hospital or at least I need a good nurse.

I need a break from the many obligations in my life.  I need sleep.  I need an appetite.  I need more time for me.

I keep breathing out, then in and slowly out again, but I’m still anxious.  My home is cluttered.  I haven’t washed my dishes or vacuumed.  I don’t think my mother has ever seen my place in this condition.  I don’t think she’s ever seen me as wore out as I am now.  She may be shocked at my dishes in the sink and I’m not sure if she will see how very tired I really am.

I wish she could understand how I feel but at the same time I don’t want her to know how sick I am.

Breathe out…

2010 was a hard year and even though my spirit has felt lighter this year my body has not.  I’ve been sick.

About six weeks ago I got a terrible case of bronchitis.  It felt like the flu.  I thought it went away, but the fatigue has come back and hit hard.

I keep getting confused and sometimes the room spins.  I keep crying too, but I’m not sure what that’s about.  Out of the blue come upheavals of emotions and tears.

My pain is worse.  I’m sick on my stomach and food is the last thing I want.  I’m angry.  I’m angry that I feel so bad and have for so long.

I finally called my doctor.  I doubt if he can help me and as I write that thought, the tears want to come.  Maybe it’s because I’m so sick and I don’t know if anyone can help me.

I dread going to the doctor.  He’ll check my lungs to see if there are signs of pneumonia, which is what I’ve suspected.  I looked up the symptoms and have every one of them.

I don’t know why I’ve waited this long to ask for help.  I guess because when you have Chronic Fatigue Syndrome, it’s hard to know when you get a new illness or have a bug.  Depression can also keep you from seeking medical help when you need it.

I feel guilty for being sick.  I feel like a disappointment to my mother.  At least, I feel like it hurts her to see me sick and especially if I’m sad.  I don’t want to hurt her.

I also feel very much misunderstood, or rather that my illness(es) are misunderstood.

“If you want to sleep while I’m there,” my mother said the third time I called her back, “then just go lie down.”

I wish I could sleep.  I would.

Most people I know don’t understand that fibromyalgia is a sleep disorder.  They think if you are fatigued that you can lie down, go to sleep and all is good.  They are wrong.

Most people I know also don’t understand the reality of Chronic Fatigue Syndrome any better than they do fibromyalgia.  If only they would read blogs by people who are living with and writing about these insidious illnesses.

If we could sleep and sleep well for more than a few hours then we might feel better.  Maybe.

I’m so tired.  I hope my mother is calm in her mind and spirit.  That’s about the best gift she could give me.   I know she’ll start doing chores when she gets here but this is the thing, it will require my help.

I can barely sit here and write, but I thought I better because I don’t know how long she’ll be here and she gets a little jealous of my computer.  Sometimes our visits are emotionally draining on me.

I said yes because I love my mother.  I know she loves me.  I know too that I won’t always have her here.

I said yes.  I sure hope I did the right thing.

I also hope to meet my weekly challenge for PostAWeek, which for me is on Saturday.

OMG!  How did she make it that fast?  OMG!  She is here!

Breathe out…

dogkisses.

Who deserves more credit?

a dog that deserves more credit than he gets

One of the topics in The Daily Post “PostAWeek”  challenge is, “Who deserves more credit than they get?”

I couldn’t decide between bloggers, dishwashers or dogs, because they all deserve more credit than they get.

Dogs deserve more credit than they get for giving people companionship and unconditional love.  Dogs are particularly important to people living with chronic illness or a disability that has caused isolation and often alienation from family, friends, community and society.

Many people I know who live with chronic illness have a dog.  They are our four-legged friends who are there for us no matter what.  A dog can make us smile when we are in pain.  They’ll get up with us in the wee hours of the mornings when everyone else is sleeping.  They give us a reason to take walks or get outside for fresh air.  Their fur is soft and petting them calms us.  Their spirits are overflowing with sweetness.  Dogs give.  That’s what they do.  They give and they keep on giving.

Sometimes, and this is one of the greatest gifts that I get from the love of a dog, they offer a reason to keep on living.

“They can’t be nurses, doctors or teachers!” a desk attendant working at a hospital said to me one time.  We had struck up a conversation while I was waiting on a relative.  She became upset when I told her about my dog who was receiving medical care for bone cancer.

“There are children starving!  I can’t believe people spend money on a dog’s health care, while there are children who do not have the things they need,” she said.

I wondered how many of the nurses or doctors had dogs.  I knew the woman wouldn’t understand about spending money on a sick dog no matter what I said so I changed the subject.

Personally, I think dogs can help people be better nurses, doctors or teachers.  Plus, mine are all that and more.   Dogs can also make these jobs easier by giving love and companionship to patients and students.

I’ve been pretty sick for the past six months.  Recently, there have been times when I thought I would have to call for emergency help.  My dogs have been vigilant caretakers.  The older dog hasn’t left my side in over two months.  If I get up at 3am, so does he.  He knows I’m not well.  He is simply amazing.  I’ll be thinking the worst thoughts and he gets as close to my body as he can.  He doesn’t usually give kisses but lately, out of the blue, he’ll give me a quick little kiss as if to remind me they are here.

My dogs love me and they need me.  In this way, they literally save my life, over and over.

We hear about enormous amounts of money some people spend on their pets.  It’s true that veterinarian bills are expensive, but that isn’t the same thing as extravagant amounts of money spent for things like diamond covered collars, fur coats and all sorts of weird things a dog certainly doesn’t need and likely doesn’t care about.

I’d rather pay for a dog to get medical care than pay for my hair to be colored, manicures, an expensive car or the expensive things plenty of people spend money on.  This is a personal choice and comparably, I must admit, I think a dog is a heck of a lot more fun than what non-dog owners spend money on.

I don’t think it makes sense to criticize pet owners for spending money on pets, while people are in debt because they wanted a big screen television in every room of their house.

I’ve been judged and criticized for spending money on a dog and I find this pretty absurd.

A landlord I called once about an apartment got so angry when I told her that I live on a fixed income and have a dog, that I thought she was going to have a heart attack.  No joke.  She was ready to rent me the sweetest little cottage in the mountains.  She was praising me for raising a son alone and going to college.  I was all this and that, until I told her about my dog.  She started screaming at me over the telephone about how she was paying for my dog’s food via her taxes.

“I can’t believe you have a dog!” the woman shouted.   “It ought to be against the law for people who get help to have a dog.  I can’t believe it!”

I told the woman how little the dog’s food cost, but that didn’t matter.  I hung up on her because she wouldn’t stop screaming at me.

Magically, the next day I met the greatest landlord a dog owner could hope for.  She kept asking if I was sure the place was good enough for my dog.  We ended up being nice friends.

Fortunately and just as magically, the landlords I rent from now are wonderful and love my dogs.  I was afraid they wouldn’t allow me to have the bigger dog but when they saw him one of them said, “You are lucky to have him.  He’ll protect you out here.”

My family used to make remarks about how I could have a better place to live if I didn’t have dogs or that I would be free to come visit them since they won’t allow dogs in their homes.  After years gone by, I believe they recognize more the value of my dogs, but they still don’t let my dogs come inside and as a result, I hardly ever get to visit them.

Dogs help people in so many ways.  Being there for a sick person when everyone else is waiting on her to feel better is a great deed.

Their companionship and love make people feel happy.  I read once where being lonely is the number one reason for suicide.  I believe the love of a dog can help prevent this.

As I write, my son is visiting for the holiday.  He hasn’t felt so great lately either.   He has some serious health challenges in life.  After dinner this evening he suddenly got the biggest smile on his face.  His dog was lying on his back with his short legs up in the air.  He rests like that (he’s part Basset Hound) and he looks very funny when he does it.

My son went over and lied down beside him to rub his belly.  I guess most dogs like to have their belly rubbed.  Our younger dog was in on the scene shortly after.  It was such a wonderful moment.  My son looked happy and this made me feel good.  Both dogs were smothering him with love.

I asked him how he felt around his dog.  I like to use words to express my feelings and experience.  I think it’s good to have a way to talk about things.

He could barely talk without laughing when he tried to respond.  “Loyal, he’s so loyal.”

My son continued on, “He’s my protector.  Awww.  He loves me.  Look at him,” and he laughed again while he rubbed his best friend’s soft belly.  “He wants me to hug him.  Awww.  He’s so sweet!”  My son let out a deep breath of air.  He looked content and lied back on the sofa to rest.  I’ve always said, and definitely believe, that dogs are good medicine.

Earlier today the dog jumped from the back seat to the front and was out of the car as soon as the door opened when I arrived at my son’s apartment.  The dog is getting old, but so far this hasn’t slowed him down when he sees his true master.

This dog is a very special dog.  He has saved my son’s life several times.  He definitely deserves more credit than he gets.

Some people used to remark that this dog is a burden to me.  He is stronger than I am, which makes walking him a creative and carefully planned task.  He has seizures that break my heart, but not so many that they lessen his quality of life.  He is no burden.  He is a gift, a blessing and like all dogs, a teacher.

Thank you for visiting my blog.

dogkisses.


 

PostAWeek in 2011

www,domain,internet,web,net

Image via Wikipedia

I like a challenge and I’ve decided to take part in PostAWeek in 2011.

The most challenging part for me will most likely be what to post.  I have plenty to say, but I often scrutinize my ideas to the point of wearing them out or giving up on them.  The reluctance or reservations I have about posting are usually because I don’t think what I want to write about is positive or will offer something good (because it isn’t positive enough) –but this isn’t how I really feel.  It’s what I think.

I want to feel free in my blog.  I want to feel free to speak my truth, whatever it is.  Of course I want what I write to have some resemblance of a, “silver lining in the cloud,” but in my heart I feel like it’s okay if it doesn’t.

There were plenty of days in 2010 when I wanted to write but didn’t because what I’ve gone through and how I’ve felt has been difficult.  I don’t want to let down the people who visit my blog wishing I felt better only to discover that I am sad or grieving.

I subscribed to The DailyPost and will do my best to participate in the community of other bloggers with similar goals to help me along the way, including asking for help when I need it and encouraging others when I can.

“If you already read my blog, I hope you’ll encourage me with comments and likes, and good will along the way.” (A Sample Post)

I look forward to this New Year!

dogkisses.


 

Holding Hope

We find it, lose it, and yet keep finding it... that elusive source of survival

Hope is a wonderful feeling.  It’s also hard to hold.  I guess some people have it most of the time, which must be a very nice experience.

I wonder if the people who have hope most or even all of the time are consciously aware of it?   Maybe it’s an ongoing feeling that is so normal they don’t think about it.

I get bursts of hope –sometimes in large doses and other times small ones, but it comes and it goes.

It’s like being on a merry-go-round.   Sometimes I jump off where there isn’t any hope and instead a great void of darkness.  It is from this desperately sorrowful place that I search for hope, because that’s the only thing strong enough to pull me out.  The trick is me being able to see it, grab it and hold on to it long enough to stand on the ground again.

Round and round I go.  Lose it, find it, lose it and find it again.

My losing hope feels like a normal human response to chronic repeated difficult situations filled with fear and grief.   It comes from not knowing what to do or being too tired to do what I think might help me find some peace.

Hope instills peace and joy.  If I could hold hope long enough, I’d have a better chance at feeling joy.  I might even feel happy again, like I did a long time ago.

Hope must be something you have to nurture.  It must be akin to yeast if you want bread to rise.  It might be the same to the spirit and mind as water is to the physical body.   Maybe we can’t survive without it.

Hope is hard to hold.  I keep losing it, but then again, I keep finding it.


Thank you for visiting my blog.

 

Ruff ruff

Santa’s little helpers!

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Have a very Merry Christmas

and a Happy New Year!

 

One mom, one son, one day

Sea Otter Mother with Pup Beside Morro Bay CA ...

Image by mikebaird via Flickr

“Write out your boundaries while your son is here,” the hospital nurse suggested to me over the phone.  “Write it out –what you are and are not willing to do.”

I remembered the conversation I had with this nurse less than two months ago when he suggested that I hand over some of the care giving responsibilities I’ve taken on.

He didn’t say to whom I should hand any of them over to and so far nobody has volunteered nor do I know of anyone who can relieve me, so there.

I have boundaries.  I told him my son doesn’t care about his life and with genuine sincerity he said he completely agreed.

How is a mother supposed to handle this… knowledge?  Just this one part of a longstanding stressful and heart breaking situation is as hard as anything I’ve ever felt.  To think that it is the truth deeply disturbs me.  To think that my son doesn’t care about his life puts me into a hypnotic state of grief.

Everything I’ve ever learned or believed or know is not applicable to the way I feel.

Boundaries mean nothing.  Lists mean nothing.  Text book ideas and ideals mean nothing.

The only thing that matters to me now is my son and his life.

Statistics, treatment models, my son’s history, “the highest level of mental health care available,” which my son has in an ACT team and as the nurse added during our conversation today, “people are waiting three to six months to get services from an ACT team,” –none of this is applicable to the way I feel right now.

I’m unhappy with what many people are seeking and waiting for.

Part of the problem is that my being dissatisfied with the services the ACT team is in reality providing for my son rocks a boat that is barely staying afloat.

“The ACT teams are overloaded with too many people and not enough resources,” the nurse said right after he told me about how many people wants and needs this service.  I’m well aware of the state of affairs within the mental health system.  They are not good at all.  “They don’t have the resources to see all of their clients, (a.k.a. consumers).  Some of the people just don’t get seen.”

My son is one of those clients.

“Your son is difficult,” he said.  I’ve heard this several times.

His teachers said he was difficult throughout his school years because he talked too much.  The creative and interested teachers loved him.  The ones who found ways to make school work for him, which was hands-on-learning, discovered that my son was not only bright, but also quite capable of being a, “good student.”

“The ACT team is difficult!” I said with strong conviction.

I like the nurse.  He has taken very good care of my son many times now.   I respect him and now, I think I need to be taken as seriously as anyone else involved in my son’s health care.

“I need you to hear me,” I told him.  “You guys have to listen to me this time.  Hear what I am telling you.  The ACT team is not providing these services to my son.  They have many good and very valid reasons, but I cannot accept them as an excuse not to see him.”

He said he would definitely pass on my concerns to the doctors and I know he will.  I know they will call me just like they always do.  They really are good doctors, but something happens in route from our conversations about resources and ideas as to what might help my son live independently in a community –to the day my son is discharged.

Somehow what is said doesn’t make it to a written document and he comes out of the hospital with the same treatment plan that he went in with.

The nurse has told me before how much he likes my son.  “I find him fascinating when he can communicate,” he told me not long ago.  Today he said my son is cognitively slower than he has seen him before.  I realize that, which is why he’s in the hospital again.  I’m very worried about my son.

The nurse also reminded me that he thinks my son is a really good guy.  Everyone who knows my son says this about him.  Most people say he’s sweet.  That’s the word I hear most when people talk about him.  People have said that about him since he was a little boy.

He has this kindness, this sort of giving unconditional loving way about him, but when he is sick, well…  I’m lost for words.

My son is lost.  He is truly lost in this world and I guess, so am I.

They say he has schizophrenia and he does have the symptoms, but he’s never fit any mold within the diagnosis, even as precarious as that is.

I’ve always felt in my heart that the doctors should focus on addiction issues, at least once.  I know you can’t force recovery from a substance addiction on any person and when that substance is causing symptoms of schizophrenia… well, I’m lost for words again.

Addiction joined with schizophrenia, or more accurately, the symptoms of schizophrenia, — is very hard to treat.  “The addiction your son has and schizophrenia are each possibly the two worst diseases a person can have,” one medical doctor told me a few years ago when my son was struggling with substance abuse.  “Your son faces both of these,” he added.

I wish the hospital would take the approach that some of my son’s school teachers took and give him a new chance.  I wish they would just one time forget his past failures and look at the successes he’s had and say hey, you know, we think your life is worth a great deal.  We want to help save it.

I wish just one time that they could for a little while stop thinking of how things don’t work, stop thinking inside the box, stop telling me things I learned when I was five years old and give a good college try towards developing a new plan.

I know this would take some time, but it’s a hospital.  A teaching hospital.  A teaching hospital with renowned doctors and bright residents who are still young enough to be idealistic,  so why not teach them how to approach the most challenging patients?  Why not teach them that they might can make a real difference in one family’s life with a little extra time thinking, communicating and reaching out to find resources in the community?

“He’s older now,” the nurse also added.  I’m tired of hearing that too.  It’s clear to me that younger patients get a bit more attention and time, I guess, because the doctors are more hopeful that they can do something.  (Studies suggest that early intervention in schizophrenia leads to a better prognosis).

His age isn’t applicable to how I feel right now.  His life is.

What am I willing, or not willing to do?

It’s possible that I’m willing to die trying to save my son.

Today the nurse said he would worry for me.  That was a blessing.

Thank you for visiting my blog.

1937 flowered hat

In 1937 the lady was brave --have a colorful peaceful holiday

Have a colorful bright holiday!