Monday, April 15, 2013

Video of Kit

https://www.dropbox.com/s/pgkldj5uk5ovtfi/Complete-2.mp4

Funerals

I'm not sure how to put this...  I've always enjoyed going to funerals.  Not all of them, but some are incredible.  You get to learn so much about the person who died, about their life, personality, quirks and more.  I don't remember my father's funeral at all (I was 10) and my mother kind of had two.   One in Halifax where people we didn't even know came to share her with us, and then again in Toronto where our family was.   If my memory is correct - we weren't planning to do anything in Halifax, but her colleagues and friends from there asked for something.  It was remarkable hearing all about the working side of my mother that we knew really very little about.  It warmed our hearts.  The Toronto one was pretty traditional, and I don't remember too much about it other than I was overwhelmed.    I've been to too many funerals, but some have been quite beautiful.   My friends husband Jim Darling had a lovely funeral - I really didn't know him at all but after the funeral I felt I had a bit of a sense of him.  Those are the ones that I enjoy - even though the loss of the person is horrible, the remembrance is beautiful.

Our funeral for Kit was remarkable.  I know that because it felt so right.  He wouldn't have wanted any religion or ceremony.  He loved music and things not thought through very well.   Which is what it was.  My brother in law Peter was the MC and he did such an amazing job of it, feeling so awkward not wearing a jacket and tie, but doing so because Kit wouldn't have appreciated that.  The music played as people came in - Queen, Van Halen, Pink Floyd and others.  Perfect - just what he loved.  And then the tributes.  His cousins and sister singing a song they wrote for him.  So lovely, he would have been so touched by it.  I wish he could have been there to hear them sing and hear Robyn play the guitar for him.  Katie speaking about Ender's Game and totally making it real for all of us who haven't read it.  Clearly showing how Kit would have connected so strongly to this book.  Robyn reading one of his writings and so incredibly giving everyone at the funeral a bit of an insight into what was going on in his head.  Telling us about the talking birds and his struggles with reality.  She gave everyone a taste of what schizophrenia had given Kit.  

Then there were Ryan, Brendan and Eddie's eulogies.  Remembering their friend from years ago when he hung out with them, did projects with them, went to Beavers, Cubs and Scouts with them, and played video games, watched movies, when to Six Flags in New York and of course talking about girls.   They showed me what a good friend Kit was to them, how they valued his friendship and missed the old Kit when he got sick.  They promised to remember him always and to stay a part of our families lives.   I'm so glad of that - they are wonderful young men.

Adam made a most beautiful video tribute of Kit which I will try to post here after.  He pulled together some amazing video footage of the three of them when they were little, my favourite part being when Kit has climbed to the top of a light pole in Niagara Falls and I told him to get down.   He said 'it's good, it's sticky' and 'no one else can climb that high'.  He said he was fine and was mad that I thought it was scary!!!  And after the video lots of pictures of the family on our many travels across the country from coast to coast.    All played to one of Kit's favourite songs - Bohemian Rhapsody - which we would sing together as a family often and loud.   I will miss those times with Kit.  He was so carefree and not worried about doing silly things in public.

After a very short visit to his grave to place his ashes in their hole and say a few words from Hamlet we went back to the visitation.  I know there were so many people there, over 400, and I only got to talk to a few.  Probably more than I remember, but I remember getting hijacked by people and chatting and then never even getting into the room where the people were.  I wish I could have spoken with everyone.  I missed so many.  I'd like to do that all over again... with a clearer head.   The same thing happened at the visitation, I was in a fog and didn't talk to as many as I would have liked to.  I wanted to hear everyone's stories about Kit.   Please share them with me if you haven't already...

The people who I have talked to after the funeral said it was a beautiful tribute to Kit.   On one of our memory cards from a friend says he didn't know Kit till that day, but through all the memories we shared he felt he could know a bit of him.  That's what we hoped for.   We wanted everyone to know what kind of kid our beautiful boy was and have an idea of what could have been if his life hadn't been cut short so soon.  

In two days, Covenant House - the shelter that Kit lived in when he was on the street is having a memorial for him.  We aren't getting to plan much of it, but they will play our video to share with those that knew him as a young man what he was like as a child.   Hopefully they will be able to recognize parts of Kit as a boy in who he was as an adult.  But most importantly, everyone will go home with a memory of Kit and their lives will be just that little bit more richer for having met him.


Monday, April 8, 2013

Aftermath

Well it's been four weeks and almost three days since Kit died.    I'm not sure where to start writing...  My last post was about how things had been going so well.   Kit was living on his own for the past 14 months in his brother's basement doing what Kit does - smoke, eat and play video games.   He was still hearing the voices, but he said the meds were keeping them a little quieter.  He was certainly so much better than he was in December 2011 when he had his last hospital admission.  He never complained about getting his monthly shot and would call us the night before to remind us...  That was definitely a first.  His daily life was functional, not great, but he'd get up, smoke, sleep a bit more, eat spaghetti, shwarma or McD's for lunch, smoke some more, play video games or spend time on his computer.  For dinner he had fish sticks and peas.  Yup - every night.  Well of course we had him over or out for dinner at least once a week, but he seemed to be doing quite well.   Other than the fact that he said he still heard voices all the time and his delusion of living in a world that didn't exist he was easy to get along with.

But we were wrong.   I don't know what he was thinking when he jumped off the Leaside Bridge at 6 am on Saturday, March 9th.  It could have been many things...  Life is so terrible and not worth living and I'm helpless and hopeless...  or 'The Controller' has a reward for me that I get to receive upon jumping...  or maybe he was psychotic from the five or more ritalin he snorted sometime between Friday night at 8 and Saturday morning and he thought he could fly...  We'll never know, and I guess it doesn't really matter.  His psychiatrist today said maybe he felt that because it was a virtual world he didn't think anything would happen when he jumped - that it would be like Groundhog Day and he'd just wake up the next morning and it would be a new day.   I  just hope he knew we loved him which I'm sure he did.

I was with him the night before he died.   I went over to bring him his favourite book - Ender's Game - and his weekly does of Ritalin.  I had to give him extra as my daughter and I were going to go to St. Lucia on the 11th.   He was a bit shaky, but really the same as usual.   I offered him a beer, but he said no, then changed his mind and had one.   We sat upstairs with his brother and  his brother's girlfriend.  We chatted, he drank his beer, went out for a smoke and then went downstairs.  I went down after a bit and he was sitting on his bed writing in a notebook.   I told him I loved him, I'd be over tomorrow to take him out for lunch and he said he loved me too and I hugged him goodbye.  I don't think he was thinking then that we wouldn't see each other ever again.  

I do know one thing now.   He isn't hearing the voices anymore.   Nothing is tearing him up inside and telling him he is worthless anymore.  He's at peace.  Gone from this world.


Obituary

CHRISTOPHER (KIT) SKELLY
April 21, 1989 – March 9, 2013

It is with deep sorrow that we announce Kit’s tragic death on March 9, 2013 after a tortuous battle with schizophrenia.  Kit was the very, very much loved son of David & Lesley (nee Adamson) Skelly and ­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­most awesome brother to Adam and Robyn.  He was so loved by his large extended family and will be greatly missed by his many aunts and uncles and 23 cousins.   Kit will forever be remembered as a gentle soul who loved music.  An accomplished   pianist, Kit loved his guitar and was the lead in two high school musicals.    He was also a great writer, winning a national award for writing when he was nine.   There was never a video game that Kit could not master.   From the age of seven Kit wanted to be a doctor and spent two years at Guelph University studying biology before his illness overwhelmed him.  
Kit was a great friend who generously shared his clever sense of humour and his love.  His friends were very important to him as he grew up.  He touched so many but will be especially missed by Brendan, Eddie, Ryan and Seung Woo.
We want to thank our incredible families, our amazing friends, Dr. Ralph Lewis and the staff at Sunnybrook’s psychiatric unit.  Also a big thank you to Covenant House who sheltered him during some of his most difficult times.     In lieu of flowers donations will be gratefully accepted by Covenant House and the Schizophrenia Society of Ontario.  

Wednesday, November 28, 2012

Calm seas

Well it has been ages since I've written...  Life has been a bit busy, and then it's not and just when you think it's all calm you get tricked and you're on rough seas again.  Not that the seas have been too rough lately, just a few swells and some tricky waves to avoid.  Fortunately nothing to do with Kit.  His seas have been calm.

The last time I wrote I had been to some advisory board meetings and from those I have been asked to work with Janssen Pharmaceuticals on a media campaign focusing on caregivers.   It's not about their drug (although I guess ultimately they like me because we like these shots) but it's really about what it's like to be the care giver for a loved one with schizophrenia.  It's been quite fun - I was interviewed on a London, ON radio station, then was on Rogers TV.  Both were a stretch for me - I'm not a public speaker, but since I totally believe in making sure care givers get more support, I guess I felt I could speak to this.   The radio one was easy - they edited the whole thing and brought it down to about a minute.  But being on live TV was a bit nerve wracking.   I was on with a Dr. Ruth Baruch who is a psychiatrist in Toronto.   She talked about the medical side of the illness and the importance of family in recovery and I told some of my story.  I really enjoyed doing it with Ruth.  We were supposed to be on CP24 at noon yesterday but the Grey Cup Parade had us postponed to a later date.  The great thing about all of it is that the caregiver survey was done by Janssen but we are not expected or even encouraged to speak at all about medication.   I would feel a bit uncomfortable if I was promoting their medication - as I know that each person reacts differently to each medication, and that for some people medication isn't the only answer.  There are just so many different ways of approaching mental illness - it's very personal.

The exciting this for me is I have been invited to Banff by Janssen to speak to their sales reps about caring for someone with SZ.  They are flying me out on Monday and I speak on Tuesday.   It's just to about 40 sales persons, and in small groups of eight or so at a time.  It should be really interesting to see their perception of the illness and for them to hear from someone who is living with someone who has it.  I'm assuming some of them will have some idea about what it's like, and others won't.   Anyhow - I'm kind of excited to have a paid vacation!!  This will be the first time I will have traveled by myself in many years.  I have a good friend in Calgary who is going to come up to Banff to spend a day after with me.  That will be so lovely.     Then later in December they have asked me to come speak to their annual meeting of 400 people...  YIKES!!

For those of you wondering how my boy is doing - he's good.   Has been working for us at the shop a bit here and there helping with inventory.  He's not doing much else but he seems to be okay.  One year now of renting Adam's basement.  Time just flies by.






Wednesday, June 20, 2012

Caregivers

Recently I have been to two advisory committee meetings.  The first one was with Janssen Pharmaceuticals who is looking for a way to support caregivers.  It's great that they are going to spend some money to help those that pay for their drugs.  We met at the Sutton Place Hotel and a bunch of caregivers were able to give them feedback to what we needed.  The outcome was obvious.   More info, more support, more...  It will be interesting to see where they go from there.

Today I was at the Royal York Hotel with two people from the CMHC (Canadian Mental Health Commission) who are putting together some guidelines for Family Caregiver Services in Canada.  First we met just with six of us caregivers, shared our stories, all so sad, and talked about what needs we had that were met, (Very Few) and those that weren't. (Most)   There was a sister who has been helping her mom take care of her bipolar brother, a mom of a son who suffered psychosis and then committed suicide, a woman who is just six months into her journey with her 20 year old son, a Chinese woman with an older daughter with bipolar and me.  (Did you know that the mental illness stigma is even worse in the Chinese culture - so she can't even count on her family for support?)   The stories were all different and all the same.  We knew nothing, still know so little and there are so few places to find what we need.  Then in the last two hours we were joined by some Service Providers and some consumers.   A 43 year old wonderful man who is trying so hard to stay well and care for his two children.   A young woman with a multitude of diagnoses who is trying to put her life back on track.  Brave people to share their experiences and I for one am so grateful for their openness and honesty.    


There was a great discussion about what services were needed for caregivers and what caregivers actually take care of.   Someone brought up tax credits and how if you adopt a special needs child you get some tax breaks but you don't get any tax breaks for being the caregiver of a mentally disabled adult.   But we support them in every way imaginable.  shopping, personal care, housekeeping, motivation, laundry, diet & nutrition counselor, medication support, and the list goes on.   I can't imagine what life would be like if I were a single parent on a low income.  You'd be stretched to the max in every way.   The service providers - SSO, FAME and Family Outreach and Response offered wonderful examples of how they help the families and suggested some great ideas that the CMHC can use.   


At the end of the day I drove the man who has schizo-affective disorder home. (lives very close to my neighbourhood!)  I got a bit lost downtown so we had a lot of time together in the car.   I'd like him to be a peer support for Kit as he has tons of insight.  I asked him if he still heard voices and he said 'it's normal to hear voices - those that don't are crazy!"  He didn't really mean it, but he has managed to gain control over his pyschosis and knows the importance of taking his meds, getting exercise and having a good diet.   He trains his dog, cares for his two children part time, he's a peer support worker and he is a wonderful guy.  When I let him out I told him I was sorry it took way longer than if he had taken the subway and he replied that he was so happy to talk to someone who didn't care if he had a mental illness, and that actually wanted to hear more about it.  He was so happy to share and had a really positive feeling about Kit.  I can't wait till they meet.  


It's great that the CMHC is doing this.  It's great that Janssen is thinking about it.  We really need to be out there to help our neighbours and friends who are caregivers.   Whether it's for a mentally ill child, or an aging parent, as a society we have to be there for each other.  

Tuesday, June 12, 2012

Publicity...

It's been quite an amazing four weeks.  The East York Mirror wrote an article about this blog and then the Toronto Star did a series on Mental Health in which we were profiled.   Telling our story to these journalists was sometimes hard but mostly really rewarding as Jennifer from The Star already knew quite a bit about mental illness and had a friend who was very ill so she sort of understood how we were feeling.   She asked if Kit would be interviewed and he said he didn't want to be or even to have her come and take his picture with us.  We were pretty sure that he wouldn't even hear about either article - although he certainly knew we were being interviewed by The Star - but he did.  He called us up and said a friend had texted him that he was in the paper.  He was a bit mad, said he didn't want his name used, but in the end he realized it wasn't something to worry about.  I don't think he has even read the article yet.   And now it's non-issue, it's old news.

Part of the fall-out of the article was that I received many phone calls from strangers, family, old friends, recent friends and people I had met vaguely years and years ago.   Everyone was offering their support and saying how brave we are to speak about it, but I don't think I'm brave, just open.  I don't think it's anything to be ashamed of, and I feel so badly for those people who do feel that.  It must be so hard to deal with a loved one with schizophrenia and be ashamed of them or yourself at the same time.  Kind of like in the old days if you had leprosy.  But this affects so many, and through no fault of anyone, and each person needs to be able to talk about it openly and to share their story to be supported.

One man who called me was the CA for the doctor I worked for before I had kids.  He wanted to share with me his story of being bipolar and misdiagnosed for many years, being on pharmaceuticals of many types and then hearing about a Dr. Abram Hoffer who treats people with schizophrenia (and other mental illnesses) with 'orthomolecular medicine' and he claims Dr. Hoffer saved his life.   I know nothing really about it other than he gives his patients fairly high doses of vitamins B3 (niacin) and C.  I can't find much against it on the web, but lots of stuff about how it does work.  I am really quite pro MD's and medicine and pharma, but I know there is a lot to be said for holistic and naturopathic healing.  I just wish the two could work together.   I talk to the psychiatrist about it and he says it's 'hocus pocus' and then says he shouldn't be so against it as he knows nothing about it.  And the guy who told me about the vitamin therapy says no one does well on antipsychotics.  Arghh.  They are both wrong.  But why can't they be open to each other so that the patients and care givers can have that knowledge too?  Why doesn't my psychiatrist know about Niacin and Vitamin C?  He should know - even if he doesn't believe in it or has proof it doesn't work.  It takes so much energy to try to figure this out.  And money - since I'll have to pay to see the naturopath.  And will they work together?  I'm not willing to have Kit off his antipsychotics as we are starting to see an improvement.  

If anyone reading this has used Dr. Hoffer's methods - please share...