Tuesday, July 31, 2012

International Bipolar Foundation



One of the speakers at the 8th Annual Stanford Mood Disorders Education Day was Ellen Frudakis who is the Executive Board Member for the International Bipolar Foundation. Ellen did a nice presentation of this organization which was started by 3 parents who had children with bipolar disorder.  I just love hearing about individuals who make such a positive difference after they face incredible challenges! If you haven’t already done so, go check out their website at:
http://www.internationalbipolarfoundation.org/.

Of the many things offered through the International Bipolar Foundation, one that caught my attention was the Buddy Program that matches those who are newly diagnosed with those with experience. For 3 months, the volunteer will help the newly diagnosed adapt to all the changes as well as help them with local resources and emotional concerns. If you would like to participate or become a volunteer, contact Ashley at: areitzin@internationalbipolarfoundation.org

Another offer from this foundation that you may be interested in is a FREE book that can be emailed to you. It’s called Healthy Living with Bipolar Disorder. To request your free copy go to their website and click on the link provided. http://www.internationalbipolarfoundation.org/



There is so much more, including blogs, newsletters, speaker series, webinars and ambassador programs. Go visit them today!

Check back again as I share more highlights from the 8th Annual Stanford Mood Disorders Education Day. 

* * *

On a personal note, today was a really bad day. My son definitely seems off from morning until night. The irritability is over the top resulting in explosive behavior. I look forward to our therapy appointment tomorrow. If you do so, could you say a prayer for him. Thank you!


Monday, July 30, 2012

More to Come from Stanford...


I just got back from an amazing weekend at Stanford University for the 8th Annual Mood Disorders Education Day. The event was even better than last year with more focus on therapy than genetics and very easy to consume information. One of the highlights was being able to talk one-on-one with Kiki Chang who is the Director of the Pediatric Bipolar Disorders Program at Stanford and as always, being able to meet other moms just like me.

Thanks to my loving and brave husband, after the event I was able to enjoy the full weekend out of town for fun with a dear friend and some serious relaxation. The only downside was hearing that at bedtime my youngest was found crying under his sheets with a photo of me because he missed me. (Ok, I have to admit it’s a little nice to hear that I was missed.)

Please check back soon when I share some of the things I learned from the conference and as always, I will let you know when Stanford publishes video of the presentations so you too can gain from this educational experience!



Thursday, July 26, 2012

A Welcomed Surprise!



I mentioned in my last post that I’m ready for summer to be over with since my kids have been so challenging, but today I have to share the beautiful surprise they left me this week.

It was after another gruesome day at the pool, basically we went home early since their behavior was out of control.

Once home, I heard a lot of whispering behind closed doors then about 30 minutes later I was told to go to my office. As I walked through the house I found notes taped to the wall that said, “Go to your office Mommy!” Once there, I opened the door and found a cute arrangement of envelopes and toy flowers. Each of the boys had a grin on their face that revealed their excitement and anticipation as they encouraged me to open the envelopes. Inside I found handwritten notes apologizing for their behavior at the pool along with a coupon to do whatever I wanted. Then to top it off, they played a voice recorder that taped each of the boys apologizing to me and saying they loved me.

WOW!!!

What a perfect surprise for one worn out mama.

I have to add that the notes were not an empty gesture, my youngest decided that he wanted to do the dishes with me for the next two weeks as part of his coupon and that evening he stood by my side for the first time being such a good helper. It was awesome!!


I guess summer ain’t all that bad after all...




Tuesday, July 24, 2012

One of Those Days

Monday was one of those days.

I spent the whole day breaking up fights with my kids.

My oldest was having trouble managing his boredom, which led to a lot of bad, threatening behavior and disrespect towards me. This led to me once again locking him outside to play by himself. (A method prescribed by our psychiatrist.)

My youngest was having meltdowns whenever my oldest wasn’t demanding my attention.

At one point my youngest was crying about a crumpled poster he put in the trash, he couldn’t get past the “nervous feeling” he had about it sitting in the garbage can. We spent almost an hour dealing with his anxiety.

Follow that with more fighting among brothers and being called “the worst mother in the world” because I don’t allow them to play electronics all day.

Monday was one of those days... I can’t wait for summer to be over.


Sunday, July 22, 2012

20 Years Later...

20 years ago I was dressed head-to-toe in lace, which was way too much fabric for what was one of the hottest days of the year. Sadly, I was proudly displaying big hair from the early ’90s. There at the end of the aisle was my soon to be handsome husband, wearing a smile that was beaming across his face.

In a matter of minutes, we were pronounced “Husband and Wife” for the first time.

I distinctly remember a moment after our wedding ceremony when we were driving to our new home. We had a pile of wedding gifts in the trunk of our car and watched the sky turn a beautiful orange color as the sun set in the distance. I clearly remember thinking to myself... this is it, I’m now starting my life.

20 years later I’m writing to you about my family as we cope with mental illness in our child. It’s funny how life throws you the unexpected. I never in a million years could have imagined the twists and turns my husband and I later faced. I’m sure anyone reading can nod their head in agreement. I even had old friends saying that there were bets against us that we wouldn’t last since we were so young. But here we are, 20 years later and still deeply in love and committed to one another.

When I think back to that drive home so many years ago, I can see how naive I was to all the challenges that a couple could face. I felt invincible. For the most part I had a lot to learn, but one thing remains true, that my husband and I can get through anything together.

Happy Anniversary Papa Bear! Thank you for being an amazing husband all these years and for proving to all those naysayers that this young, bright-eyed couple had something special and lasting. Let’s get started on the next 20!



Friday, July 20, 2012

Using Facial Expression Charts

This week in therapy our therapist discussed how our youngest has trouble identifying his feelings and doesn’t know how to self-soothe. I can see examples of this often when our little one gets really upset, he tends to display anger (something he has learned from big brother), but if I calmly tell him, “You look upset, do you need a hug?” He quickly drops the expressions of anger and goes into tears and climbs into my lap for a hug.

Our therapist explained that if we could help him identity his true feelings, we can begin training him on how to self-soothe. So the first thing she suggested was using a facial expression mood chart and having him pick out the expression he is feeling inside. You can find these charts online by googling images or may have seen them hanging in your therapist’s office.

Today my little one was very upset about playing a game with his brothers so I decided it was the perfect opportunity to try this chart out. This is how it went:

I told my son that he looked upset and asked, “What are you feeling?” He had trouble putting it into words so I had him look over the facial expression chart and asked him to pick out what he was feeling inside.

He calmed down, looking curious about this game mom was offering and selected the “sad face”. So I said, “so you’re feeling sad?” With a big pout he nodded, “yes”. Then I asked him what he could do to make himself happy, while pointing to the “happy face”. At first he said, “I don’t know.” Then I encouraged him to really think about it. Then he said, “Play another game?” I praised his conclusion and thankfully he was able to move on to another game.

So is this easy as cake? Not so much. The next time I tried to encourage our son to self-soothe he was more resistant. Our therapist explained that this method will need to be done many times a day in order for him to slowly learn how to do this on his own and as a result be more in control of his emotions.

So has anyone else used these charts for therapy with their kids and care to share?


Tuesday, July 17, 2012

Mood Disorders in the Media

This week the media has focused a lot of attention on the announcement that Jesse Jackson Jr. is being treated for a mood disorder in a residential treatment facility. It’s been very interesting reading all the interest this announcement has brought. One is the question of what a mood disorder is and if it’s a real illness that would require a stay in a treatment facility. I thought the following article from CNN Health did a wonderful job of outlining what a mood disorder is and the treatment that may be involved, you should check it out or share with family and friends that are trying to understand mood disorders:

What Do We KnowAbout Mood Disorders:
http://www.cnn.com/2012/07/13/health/jesse-jackson-mood-perspective/index.html?hpt=he_c2


Sunday, July 15, 2012

Not Forgetting the “Middle One”

With all the attention put on our oldest and youngest to help with their challenges, it leaves our middle son (9 years old) watching from the sidelines. I have to say, I’m amazed at how well he’s handling it all. He’s thriving in so many areas of his life and continues to have compassion and forgiveness for his brothers. But my heart is still sensitive to what his needs may be and how we can help him cope with all of this.

So, it was time for another “mommy date”. Since he loves to read, we both grabbed our books and headed to Starbucks to enjoy a warm caramel milk and some small talk. In the past, he tolerates my gushing attention for a bit, then politely asks, “can we read our books now?” But this evening we never picked up our books, instead we engaged in great conversation, mostly about his brothers. I allowed him to express his honest feelings about what was going on in our home, his observations were pretty dead on, “Big brother is doing so much better, but little brother is changing, he’s starting to act like big brother!” He explained how hard it can be living with them and how stressed out it can make him feel. I then asked him what we could do as his parents to help him cope better and as expected, he offered up a good suggestion. He explained that since it’s summer, he never gets a break from his brothers and what he would like would be a mandatory “quiet time” everyday so he can relax a little by himself and not worry about his brothers acting out.

So, that’s just what we’ve done. I know this isn’t easy to accomplish since the other brothers may interpret this time as a punishment, so I’m working hard on convincing them that this alone time is a good thing. We’re three days in and it’s going pretty good. I can see how much our middle son is enjoying this time, he even asks during the day, “Is it quiet time yet?”

I also noticed how much this “mommy date” helped him. The next day he had a spring in his step and commented on our evening several times, I also found a love note he wrote me, which of course put a spring in my step!

As much as my middle son gets stressed out by his brothers, he still has amazing compassion for them. During our talk that night he expressed over and over how sad he was that his brothers had challenges. He said, “I wish I had a magic lamp, if I did I would rub it to make three wishes. The first wish would be for my older brother to be healed, the second wish would be for my younger brother to be healed, and my third wish would be that no one in the world would perish!” Then he thought for a second and said, “Or my third wish might be that we get a water park in our backyard, I’ve always wanted to go to a water park!”

Oh, if only magic lamps were real...





Thursday, July 12, 2012

Our “Little One” Starts Therapy

This summer has been a tough one for our “little one” who is now 7 years old (the same age when our oldest started showing signs of a mental illness). Over the summer we’ve seen our little one’s agitation grow and anxiety take over as mentioned in a previous post, Staring Over with My Youngest. We’re still not sure if this is just Post Traumatic Stress Disorder from living with his brother, if it’s an Anxiety Disorder or something else, but either way, both our psychiatrist and therapist thought it would be a good idea to start therapy.

We had our first appointment with our therapist yesterday, he’s seeing the same therapist that my oldest sees. After seeing him with his brother at previous appointments, our therapist said that she could see how our little one uses avoidance as a coping mechanism to tune out from the family and she’s witnessed for herself how easily agitated he gets.

This week he refused to use his book light because he was worried that his batteries were going to die. I explained to him that he had new batteries and that I had a bucket of other new batteries so we could replace them when they’re gone. But even after getting out of bed to exam the battery bucket, per his request, he still couldn’t let go of his worry and had a huge meltdown. Then the last few Sundays before church, he gets overwhelmed, begging us not to go to church because it’s too crowded there. We hear the same resistance when we want to eat lunch in a restaurant. At the pool, he’s easily angered, resulting in him screaming, “IDIOT” at his brothers before storming out of the pool and knocking over signs. Around the house, he tends to play alone and often comes across nervous, even hiding his face with his t-shirt as if he feels embarrassed when coming to talk to us. He seems uncomfortable in his own skin lately. For days he’s been moping around the house not wanting to play with his brothers saying, “I hate them, I wish they would go away forever!” He’s easily offended and assumes we’re being mean over the slightest observation about him. He also complains about being scared a lot because of “scary thoughts.” Being that he isn’t as expressive as his older brother, he isn’t willing to tell me about these scary thoughts.

As much as some of these behaviors sound the same as his brother, they seem to come from a different place. With our oldest son, some of the behaviors came from a “dark place”, I don’t know how to describe it other than that. With my youngest, it seems that he’s on high alert and experiencing overload from it. It makes him irritable, anxious, scared, overreactive and at times, explosive. It’s like his body is prepared for the worst all the time and anything can set him off, as a result, he’s emotionally exhausted.

And we’re exhausted too.



Sunday, July 8, 2012

Meet Tahir—Interview from Across the World!



Tahir with his two grandchildren, Eimaan and Mustafa.


Today I have a very special interview from one of my readers who recently reached out to me on a post about creativity. Muhammad Tahir is his name, he’s a courageous father who’s living through the tragic loss of his oldest son who suffered from bipolar disorder. Blessed with an amazing ability to write poetry, his son, Nasir Mahmood lost his life to suicide 5 years ago. Today, Tahir has decided to open up about his son and his illness with hopes to reach the many parents like him and children like his son so he can make a positive change. Please welcome Tahir and if you’re moved to do so, please leave any messages you may have for him in the comment section below, he hopes to hear from you!

Welcome Tahir, I’m so touched that you wanted to share your story with us. I know this wasn’t an easy decision and I want you to know that I’m so grateful for your courage. I along with my readers are reading with open hearts with a hope to learn from your family.

To start the interview, can you introduce yourself and share a little about who you are and where you’re from?
Let me from the very outset thank you for providing me a forum where I can talk about this tragedy which has struck me and my family. Very briefly who I am. I am a retired Major General from Pakistan Army. I am presently living in Islamabad where I build my own house after my retirement from the Army in 2008. I served at different places and varying appointments of the army.


Tahir in his uniform with granddaughter Eimaan 
when she was 1 1/2 years old.


I now have two sons and a daughter after Nasir Mahmood whom we all called “Moody” left us. He was the eldest and was born on March 21, 1975. We did not call him “Moody” because he was moody, it was his last name “Mahmood” that we changed to “Moody”. 

I served for 38 years in the military. I served abroad as Lieutenant Colonel in Somalia from November 1993 to March 1995. And again as a Major General in Liberia UN mission as a Deputy Force Commander. My elder son, Muhammad Ali, is currently in Australia and my younger son, Muhammad Bilal, lives with us and is studying Law. Mariam is elder to Bilal and is married and has two kids, Eimaan who is 11 years old and Mustafa who is 7 years old.


Nasir Mahmood, “Moody”, Tahir’s son who died on May 4, 2007 of suicide. This picture was taken in 2004 in Dubai where he worked for 5 months or so. My wife says, “Though Moody is smiling in this picture, she sees pain in his eyes.” This was the time frame when Moody’s illness started to take shape and in his workplace he started secluding himself by reading all the time. 


Can you tell us about your son Moody?
Nasir Mahmood, alias “Moody”, was born in Lahore on March 21, 1975. He was a quiet child and not naughty like some children are. There was nothing extraordinary which I should have noticed or bring out at this point. Yes, he was fond of dressing well. He was not bright in studies and like many parents I had to constantly keep telling him to study. 

When he was about 17 years old, I now recall in hindsight that he was a moody guy. He would take on something and would pursue relentlessly.

When he was 19 years old, he wanted to do hotel management and decided he should go to Russia and do his studies for 3-4 years. I sent him there and he arrived at a university in St. Petersburg. He was required to do his year long course of Russian language. I was worried about him being alone. 

After earning his Russian Diploma, he called me and said that he does not want to pursue his studies and would like to return. He came back to Pakistan. Back home we did not know what he’ll do next, so he started preparing for his Bachelors Degree. Then he fell in love with a girl who we did not know.

In Eastern culture the parents will never allow this kind of relationship and neither the children will share such flings. I am not sure, but his love affair may have caused him to hit rock bottom. I was in Somalia when my wife told me that he had cut his wrist perhaps because she rejected him. He survived this first suicide attempt. 

After two years, he told us that he wanted to marry Sonia (I don’t know if this was the same girl). I did not approve as he was too young with nothing to show for—no job, no back up. The girl was a year or two older than him. She was rich but her reputation was tainted and some people raised eyebrows about her lifestyle. Moody and Sonia were madly in love. They decided that either they will marry each other or they won’t marry at all. 

Then one day he said that he was getting married tomorrow and wanted us to join. We were shocked when we found out that he told the girl’s parents that he and his parents have agreed. They issued invitation cards for the marriage. 

When I told him that he should go ahead and marry but count me out as I never agreed to him marrying this girl in the first place and this was not my decision but a family decision. Anyway he did not go and I do not know what happened. The girl Sonia broke up and I later came to know she went to the US. 

During this time he did start a job in Lahore away from us. He earned well. He started to play golf and went crazy with it and became very good. He would swing and swing for hours and would proudly tell me that he was driving the ball over 300 Meters. Day in and out it was only golf. He went crazy for the game. Bought expensive golf clubs. Always selected the best things for himself no matter what the price tag was. This lasted for some time till he started reading books. He was reading hours and hours and finished book after book staying up all night. Little did I know he was going through an amazing metamorphosis. I noticed that whatever he did he would pursue it madly for few months and perfect it. This was now year 2003.

Then came another brain wave. He wanted to go to Germany to study in a German University. I told him without German Language it was a no go. I never thought that he would learn German. He perfected his language skills to an extent that he read and memorized Shakespeare’s Hamlet in German. He caught me by complete surprise, something I never expected would happen. As parents, we sometimes fail so badly to know our children.


Moody in 2006 a year before he died. 
He would keep his whole head shaved and used to say 
“This is the ‘in thing’ these days and it’s liked.”


Then one day we had a disagreement on his choice of University abroad which was beyond my means. There was no way I could afford it. He tore all his forms and left home. We did not speak for a month.

Then a friend of mine called me and told me that my son does not speak with anyone and I should take him to a psychologist. I asked Moody and told him about this. He laughed and said that he reads books in his spare time when he’s not working and he can see that other people’s mental level is too low and different and that they do not have enough knowledge to discuss issues with him. 

Asking my son to go to a psychologist was like telling him he was crazy. In Pakistan it is a taboo and there are not many people pursuing this medical profession. Anyways, he started reading books and I realized that he was writing poems which were very intense and I found it difficult to understand at times. He wrote me letters and we did not notice anything alarming. His new found love for reading books made me happy and I bought quite a number for him. All he did was write and read. 

In the end of 2004, Moody’s younger brother Ali got admission in Australia. I advised Moody to go to the same university as his brother was studying. But he wanted the best university and eventually managed admission in ANU, Australian National University. This is where he started showing his first signs of mental illness that I know. He slided fast within 5–6 months which ultimately lead to his death.


Moody in 2006. Notice his beard—he never shaved it till he died. Notice his younger brother Bilal in orange t-shirt (in photo below)—he has that same beard and never shaves it off. Bilal was the first to see Moody after he killed himself. He was very attached to his brother.


Can you share with us the type of symptoms you saw?
My son was never shown to a doctor. It was when he was in Australia and doing his masters in Australia that through his letters which he wrote he started saying that he had a hole on top of his head and had been captured by two spirits. One had taken control of his right arm and the other his neck. He also felt something strike him hard in the groins. 

Now when he was sending all these stories I misjudged the whole state of affairs and thought that he would like to extricate himself from the university because he could not do accounting. I insisted that he stay and finish his studies since I had already spent $25–30 thousand dollars.

Between father and son we exchanged many letters. He wrote a total of 22 poems. His writing skills made a 360 degrees turn and something about the quality of his thought and expression surprised me. It was so sudden that for some time I thought it was not his original work.

Here is a sample of Moody’s writings describing his spirits and how they affected him:
I started experiencing tapping on my arms, shoulders, feet, legs and sometimes my thumb or other fingers would flicker momentarily especially when I am writing. Every muscle of my body responds. Even right now I am experiencing this writing to you. But gradually he has started to become more resilient. He communicates with me through words spoken on TV, while I am reading, when I am writing my office work, during conversations with people. I can’t even begin to explain you how difficult living has become when someone is being distracted after every few seconds and is corrected each time. Imagine as if someone grabs me from behind my neck and moves it around to look at certain objects, as he desires me. I try to not move and stay still but I cannot do that because he strangles me by the neck. If I could feel his hand then I can move it away because it is physically possible. My life is living hell in every true sense of my sentences. He is living and acknowledging my thoughts. The sort of thoughts those are mute. No shrink in the world can help me and no medicine can cure it.
After losing another relationship, Moody said that he was returning home. His condition was very bad, he would go barefoot out to Canberra Grave yard. I sent his brother Ali from Sydney to go and see him. He said that he was unwell. Ali boarded him on plane and saw him off. 

When he came home he complained about what was wrong with all of us and why everyone was acting strange. He was shown to a doctor who did not tell us much except that he was in depression and then the doctor gave him medication. I had no idea what bipolar disorder was and whether or not he had it. The meds which were prescribed brought him back within 2–3 weeks. 


What other unusual symptoms or behaviors did you noticed?
He started reading a lot in Arabi’s book on The Self-Disclosure of God and would watch the movie The Last Temptation of Christ. He believed that the spirits had gained control of his body and that these were Muslim Spirits who were not leaving him alone. One day he wrote me a letter to tell me that he was converting to Christianity. He thought that if he did that, the spirits would leave him alone. This did not happen and in his last letter before he committed suicide he mentioned this fact.


What type of treatment did your son have to treat his illness?
Sadly, my deepest regret and guilt is that I failed to go all out for him. As I was in Liberia, I could not monitor his medication. He stopped taking them and told his mother that the medications were making him slow and despite our best efforts, he skipped medications. I know he must have seen all the side effects of these medications on the computer and also I believe he knew about his disease. He spent all day long in his room and read books. He stopped writing.


You mentioned to me that in your culture, seeking help for mental illness isn’t done and that careers in the mental health field aren’t even pursued because of the stigma. Can you share more about this and how this stigma impacted your son’s life?
It had an impact on us and him as well. At times, Moody would would sit and stare and just smile. One day, he returned after meeting his friends and told his mother that now his friends are also laughing at him. He stopped going out too much. He would not even go to the doctor and my wife who was the only elder at home had absolutely no idea what was going on inside his mind. 
 

I read online in one of your posts that you have guilt about your son’s death. Can you share where this comes from?
First, I was not there for him. Second, I did not gauge the gravity of the situation and allowed him to slide fast. The mere fact that I came to know about bipolar disorder after his death is enough guilt. I have tears in my eyes as I write these lines. I wish that I could revert time. It has impacted my wife and younger son too much as they were the ones who saw him in his room where he killed himself. 


Looking back, what would you have done differently?
Oh a lot of things, as you can see it is so obvious. As I was not present, I could not physically follow him. My wife says that, “the children should be listened to”. She thinks his suicide was triggered by him not getting married to Sonia. And she says that he decided to take his life after he came to know that Sonia had gotten married and had a child. That broke the camels back. She repents for not getting him married.


What would you teach other parents based on your experience?
Personally, I think we as parents make lot of mistakes in raising kids. We fail to recognise the true potential of our children. I’m not talking about exceptions. I’m talking run of the mill. My culture and that of the West is very different in raising kids. We keep family together, more of joint family. There is a lot of respect for parents and marriages are mostly arranged through the consent of boy and girl. The children tell you so much without saying and we fail to notice things which are right in front of our eyes. We take things for granted. We do not heed to what children want, sometimes their demands are excessive and sometimes we replicate what our parents did and behaved with us. Sometimes we’re over protective and sometimes we do not care. A middle ground is the best.


What would you say to someone who was suffering with mental illness but was afraid of treatment because of the stigma or social impact of a diagnosis?
I would tell him first and foremost about the great men and women, the achievers of so many varied things in history, in every field, who have also suffered and yet achieved. We need to tell them that, “yes we know you suffer in moods, but everything is okay.” I believe most people with bipolar disorder are not listened to, when they tell us about their problems, we brush it aside. We become intolerant of their mood swings. We need a big sympathetic heart and open mind to listen and bear with them.


As a final word, what message would you leave with us?
The last word is, never take anything for granted. 

I will close after telling what Moody did before he killed himself. 

I was in Liberia and it was about 5:00 in the evening. My wife was just lying on her bed when Moody came and sat on the bed besides her and said, “Mama do you pray for me?” She said, “what kind of question is this, I pray for all of you!” he repeated his question at least three more times.

In his last days, he was very quiet, soft and low tone. 

After 20–25 minutes of discussion, he got up and started going towards the door. My wife Tallat said to him, “Moody we will look for a girl for you to marry.”

He said, “Mama it is no use, these spirits do not let me live and they will ruin my marriage, no use, it’s too late.” He said this and left while my wife offered up her evening prayers. 

Bilal, my youngest son, went to the computer and saw the letter Moody just emailed me. It actually started by this line “AGHA this is my last letter to you in this life ---------. 

Bilal ran to his mom and shared this. My wife took a minute to finish her prayers and said to Bilal that today, again, Moody is not in his right mind. 

Moody’s room was in the far corner of the house. When they entered his room, Moody was bleeding and the pistol was on the floor and his head was backwards. All hell broke loose. Bilal dragged his mother out of the room. The driver was called and he was taken quickly to the hospital emergency. It was too late, he had already left us.

Earlier that evening, after sending me his final email, Moody came and sat in the TV lounge with me. We did not talk, he sat for a few minutes and went to his room. After 20 minutes, on my way to the airport, I told my wife Moody had gone to sleep as I do not see light in his room. 

I left and then while at the airport, I was told he came looking for me and told my wife he was awake. I called him and we exchanged goodbyes. I told him I will call him as soon as I reach Liberia. Those were my last words I spoke to him. 

BUT I MUST TELL YOU SOMETHING! Something strange I felt, especially when I was on my last journey from Accra to Monrovia, I felt something in my heart—I was sad for not meeting him. THIS WAS EXACTLY the time he committed suicide. That pain I still feel in my heart. It does not let me go. 

Thank you for patiently reading my story everyone. You must read my lens on Squidoo about Moody’s writings (see link below).


Best wishes,
Tahir


Tahir with his family today. Son Bilal in orange t-shirt, wife Tallat, 
daughter Mariam with her children Eimaan and Mustafa April 2011. 
Missing in the picture is elder son Ali who is studying in Australia

Tahir posted a poem Moody wrote to his brother Bilal in 2005. 
Bilal later, in 2009, wrote his first two poems 
in honor of his brother’s memory. 

* * *

I know that Tahir is anxiously awaiting your responses to his interview, please leave him a message, comment or question below, he would love to hear from you!





Thursday, July 5, 2012

Praises for Lithium—One Year Later

Can you believe it’s already been one year since my son started Lithium? This has been our most successful season yet and I have Lithium to be thankful for it.

I still remember the first weeks after starting Lithium when my son said, “I feel born again”, to describe how much better he felt. I remember the drastic change in him. Looking back he was clearly suffering from depression among other mood symptoms and once he started Lithium, he blossomed out of his shell and started calling kids for play dates, something that was unheard of in the months prior.

I’m smiling now as I recall how he became a happier person right before my eyes as he would follow me around the house, excited to share details about his day. He sounded bubbly and was smiling constantly. For the first time in a long time he started to engage with his family at the dinner table. Those around him could visibly see that a weight had been lifted off him and he seemed more relaxed in his own skin.

I went from recording bad episodes, symptoms or rages in our behavior charts constantly to making a note every few months. Those written logs were a part of our everyday life and now they sit buried under piles of other papers since I no longer need to report in them regularly.

It’s interesting when I think about how frightened I was about starting Lithium. I have a clear vision of me sitting in the pharmacy praying about this next step. I was worried about horrible blood draws, fears about toxic reactions, weight gain and questions as to whether we were doing the right thing or if we were taking unnecessary extremes for our son. But a year later, I can say it’s been the single most important step we’ve taken in his success.

Lithium has helped our son become stable, thus allowing therapy to be effective for the first time. We still face challenges, but it’s now manageable and the good days far out weigh the bad.

I’ve also come to the realization of how sick my son was prior to Lithium. Over the years we became accustomed to the rages, mood swings and anxiety. The violence was no longer shocking and if anything became predictable. After years of trying to help our son, we grew to accept that this was our new normal and that this was as good as it was going to get. But we were wrong. We were far from stability, yet couldn’t see it from our side of the fence. It took a serious medication to have a serious impact on our son. The results have been remarkable.

Now I don’t write this post to encourage every parent to put their child on Lithium, absolutely not. I respect the seriousness of this step and also believe that what works for one kid may not work for another. But what I do hope to encourage in other parents is to not be so afraid. Had I let my fear stand in our way, I would have denied my son this amazing year and all the joys that have come with it. I would have also denied him the precious year of developing a sense of self worth, something that was unachievable in the years prior.

In his yearbook this year when he was asked to write one wish he wrote, “To live.” This to me is evidence of the hope he now has.

As for all the fears I had, well the blood tests have been amazing easy, he has another one next week and has no problem going (recall the previous years of abusing his dad in the car on the way to a blood draw), he also has had no weight gain and no bad side effects. His kidneys are monitored on a regular basis due to a birth defect and his nephrologist is very comfortable in continuing Lithium. I know that there is still potential for side effects and we’ll face them if and when they come. But I feel these risks are worth it for the gains that can be made.

As one of our psychiatrists told me, it was imperative that he became stable during these developing years in order for him to develop a healthy sense of self worth that is critical for his development and future life. In addition, we could not allow his violence to continue, if it did, he would only grow stronger and more dangerous and would potentially face life changing ramifications. The risks without medication were too great for him and those around him.

My only regret was not taking this step sooner, we could have avoided so much pain for our son and for our entire family and the damage we’re left to repair would have been minimized. But as many of you may know, without tests, we’re often left to take these big steps once things become unbearable.

I can only stand as one parent sharing that for us, Lithium has been a huge success and one that I pray can continue for years to come, or if necessary, for the rest of his life.


Tuesday, July 3, 2012

More from Sean Costello’s Mom!



Some of you may recall an interview I did over a year ago with Sean Costello’s Mom, Deborah Costello Smith. If you missed it, you can read that interview here:

Sean Costello’s Life


Below is a new message from Deborah about a fundraising campaign to help those who may be putting their life at risk while trying to manage sleep difficulties often faced by those who are suffering from mania. Please read her message below:


* * *

Many of you have heard of the MOJO Project, as we tried to get funding through the Pepsi Grant. We did really well for a new and small organization, thanks to the hard work and sharing of our friends. However, we pretty much found out that you have to have an organization related to animals to win (not kidding)! I’ve been known to hold my umbrella over my rescued dogs who hate rain, and I do support animal causes. I can’t help but think that saving a human life is just as important.

Through the MOJO Project, the Sean Costello Memorial Fund for Bipolar Research can develop a mobile and web-based application to monitor sleep and warn of impending danger of sleep deprivation. This is a particular problem for musicians.We need your help to make the MOJO Project a reality. We have initiated a Fundrazr campaign to do what is called “crowd funding” to get this life-saving application up and running.

You all know Sean’s story, I assume. I have heard one too many of the same (think of sleeping difficulties that led to the deaths of Michael Jackson and Heath Ledger....while it is not known if they were bipolar, they, both busy and creative people, died trying to sleep). This fate isn’t reserved for the famous. Please visit the Fundrazr campaign link and read the message of another mom who too recently lost her beautiful and talented son to mania related to lack of sleep (not drug-related). He was only a few weeks younger than Sean. Heath Ledger was born the same year and month as Sean.....too young to die.

Here’s how you can get involved:
Learn more about the MOJO Project...lack of sleep is a trigger for mania and mania is dangerous.

Donate. Every dollar counts.....$1, $2, $500, whatever you can afford. The amount of one soda from McDonald’s, or one over-priced coffee from Starbucks.

Whether you donate or not, please share the Fundrazr link and the campaign's importance with everyone you know.

Success comes with numbers, and no one can tell the story better than a person committed to our cause.

Use Twitter, Facebook, Linked In, or Pinterest for more than conversation. Use social media to do good, every time you log on. Is there really a good excuse not to? If we only leave this imprint on the world of Bipolar Disorder, our organization would have succeeded, and I can feel that Sean’s death made a difference.

From the bottom of my heart and the hearts of people who have suffered a loss due to mania resulting from sleep deprivation, thank you!

— Deborah


* * *

I’ve added Deborah’s blog, “The Sean Costello Memorial Fund Blog” to my blog roll list on the right, check it out, she has some very powerful posts that you may like to read.





Sunday, July 1, 2012

Family Vacation Heals Us


We just got back from a family vacation at the ocean where we rented a small beach house overlooking the water. To say it was spectacular is an understatement.

As you can imagine, we didn’t plan much—other than playing at the ocean and returning to the hot tub once back at the house. Over the years, experience has taught us that the less we plan, the better. We also took advantage of vacationing in a home where we could prepare familiar family meals, this eliminated a lot of the upset a vacation can typically bring with stress over new foods and crowded places. Add to that the incredible healing power of the ocean. Almost immediately you can see our son’s body relax and his spirit glow. As a result, our entire family got into “the zone” allowing us to connect in a positive way and build special memories.

One memory I’ll always cherish was a day where the winds were incredibly strong, so much so that the younger kids were almost in tears because the sand felt like needles on our skin. My sweet husband searched the beach to improve our circumstances and found a large rock for us to hide behind so we could shield our bodies from the blasting wind. And there we were, all of us huddled behind this huge boulder with the exception of my oldest who was out in the wind having the time of his life digging sand castles. He wasn’t letting the unfortunate conditions bring him down, if anything he was embracing every moment with pure joy.

I also took special pleasure in seeing my husband connect with our boys, I could tell they were soaking it up and even my husband commented on how much fun he was having with each of them. The last time we had this kind of vacation was 8 years ago. It was the last time we went on a vacation alone as a family and a time before our son showed symptoms of a mental illness. Back then, I didn’t even know what a mood disorder was and family joy was a normal part of our life. Over the years, I’ve looked at old photos from this trip and have longed for our life to return to that kind of normal.

Now flash forward 8 years later and I can honestly say that during this vacation, I felt our “normal” once again. We may have had medications throughout the day, but I got to see my son at his best. I got to feel our family connect like we were so many years ago. It felt so good. It felt like coming home.