Not all Activism and Roses: Crappy Days

So, for once, I am chronicling my low period, the period when I have a stream of crappy days. Yes, I am an activist, speaker, researcher, writer, small entrepreneur, wife, friend and  whole bunch of other things – but there are days like now when my body and mind does not like me. So the tiredness of being overdue for my semi-annual vacation, an acid reflux flare and a mix of a suspected cold and/or sinus infection means that I am feeling at my lowest, both physically and emotionally.

It sucks to be in this space but it is also part of life as someone with bipolar disorder. Your physical does affect your mental health and I would not be lying if I did not say that I had my moments of self-pity and “life sucks” over the past couple days.  I want to give one last bit to finish off many of the projects I have to complete and people I have to talk to. However, as I said to a friend, “Right now it seems as if my body has said to my will-to-work, Sit your b****h-a** down and be quiet. It’s MY time now”

So while my body takes back every ounce of sleep that it could, I gots to lay low. I prolly will go to the doctor tomorrow. Ugh!!! For driven me, it is like, dayum! But I am very conscious of that balance that I need to have of self-care. It doesn’t always work out perfectly but I take these times as warning signals and act accordingly. So, I am going to hand off what I need to tomorrow and then my vacation will officially start.

The blessing that you have been given is always balanced out by the pain and suffering that preceded it and the changes in your life after the blessing arrives. Pain, suffering and change all do the same thing – throw us off balance, humble us, show us our limitations. The blessing shows us what we can be; the pain, suffering and change show us what we are. – Nicole Cowie

Life Trade-offs: The Bipolar Edition

So, these past couple weeks a bipolar wench been out in these streets and e-streets. First it was two conferences (Down Syndrome Family Network and the Inherited and Severe Blood Disorders Conference), a prayer breakfast, meetings in between and a sick husband. And then my feature on Express Woman came out. Much thanks to the lovely Laura Pierre-Escayg and A Very Special Disabilities Forum. I got much more love and e-love than I ever expected or dreamed of. Phone calls, FB inboxes, WhatsApps, you name it. Thank you so much.

BUT. The net result of alla dat was one very tired Nicole. Not the best thing for me. If I didn’t get enough good sleep soon, I would be in dangerous territory – as in on my way to an episode. I knew that this tiredness had gotten ridiculous when I told a friend of mine that I forgot to take a selfie with her at one of the conferences and she told me that I fell asleep. Quelle embarrassment!

So, I knew that there was going to be a public holiday on Thursday and so me and the huzzie made a promise to each other to sleep. I went to a Latin dance party the night before and danced the night away to ensure that I would definitely go to sleep easily, came home, unplugged devices and phones and slept for 12. HOURS. STRAIGHT. Then today, I had two engagements that took me till 2 p.m….came home and took another long nap. Or rather, my body took it from me.

It meant that I have a lot work undone. (I still have reviews to do of both conferences for you) as well as other work. However, when it comes to my health, one of the reasons I have been relatively mentally healthy for so long is that ability to SHUT. IT. DOWN. It doesn’t mean that I don’t care about the impact that it may have on others or that I don’t feel guilty. That is the bipolar trade off. During those tired periods, the filter between my mind and mouth is short so I usually just try to remain quiet, ignore crap if it irritates me or keep what I have to say short and sweet. If anyone was harmed during the making of this week, I apologize. I do genuinely try not to be nasty at these low moments when I am less than my best. But again that is the bipolar trade-off.

The bipolar trade-off means recognizing your limitations and making no apology to yourself or others about taking care of yourself first. It may mean disappointing some people or postponing some commitments. It may mean that some people don’t get to see you at your shiny, happy best. For a person as driven as myself, that can be a tough pill to swallow. However, I have to do this trade-off or the worst case scenario could happen – ending up back in psychiatric hospital. So I guess for this weekend, it is go slow till I am up to speed. Now lemme go see the latest viral vid…….

For persons with disabilities (including me), sleeping can be real shitty

So, I haz a question: Why can people be so judgey about if and when you sleep? I keep encountering this over and over again in my everyday life (and yes, I judged people too. I am not exempt from the circle of judgmental-ness)

judgey oprah.gif

Day people (who sleep at night) can be very judgey of night people (who sleep well in the day). To lesser extent, night people judge day people. BUT, for the most part the world revolves around people who are active in the day. People are also judgey if you sleep too much or at the “wrong times” (whatever the hell the wrong time is)

But then what people judgey about sleep got to do with me? Well,  as a person with bipolar disorder, I have sleep issues y’all and I still gotta live, work and play around other human beings – so yeah. For me, my sleep issues go a bit deeper than just not getting sleep and feeling crappy the next morning. For me, lack of good sleep or sleep at all over an extended period of time is a major trigger for a depressive or manic episode. Let me ent sleep for ah two weeks, nah. There will be a very high probability of  that I end up in psychiatric hospital. So all I need to do is go to sleep, right?

Well the problem is that I have issues going to sleep at night. It is  a struggle every night to do what most people take for granted – hop into bed and drift-off to La-La land. A lot of times Mr. Sandman can be a hater towards me y’all. The Sleep Fairy be giving me that nasty sideye!

sleep-fairy

I do have a bag of tricks to help me sleep. These tricks include playing soft music, put some drops of lavender oil on my pillow, bathing with a lavender body wash at night, reading a nice book, drinking chamomile tea and doing a nice online sleep mediation exercise and failing that take a sedative ( last resort). BUT, I can do any or all of these and still not fall asleep.

If I forget to take my nighttime dosage of medicine on time, no sleep. I have acid reflux issues as well. If my belly is kicking up a storm, no sleep. The acid reflux issues causes sinus issues, if I get sinus blockage and don’t relieve it, no sleep. If I am under extreme stress during the day and I get wired up, no sleep. However, I have a lot less problems falling asleep in the day. I said less- not none. So here it is y’all, I love to sleep but sleep does not always love me back.

It means that my schedule can be wonky and it can affect my work flow, which can be frustrating at times. For me lack of sleep means that  yes, I feel crappy. It also makes me somewhat more irritable. During those times, I am conscious that my tolerance levels are low and try to adjust accordingly – (which means ignoring people when they do stupid stuff that annoys me or choosing to speak up at a later date) Depending on how much sleep I was able to get in, I can push it and function. It just means that I crash when I can. When I crash, it may not be at the “right time” for other people  – hence why I talked about people’s judgmental attitudes earlier. Thank God now I work at Me, Inc. and I have an understanding husband. When I was out there working for the man it wasn’t easy and I had to have extreme discipline to go to work. However, it was doable.

This is not just a personal struggle, though. Persons with bipolar disorder generally have struggles and issues with sleep. It is one of the physical symptoms of this particular disability. However, what I did not know until recently is how much persons with other disabilities struggle with sleep issues. I only began to realize that when I began to hang with a couple of Moms of autistic children (shout out to you all, ladies) who told me about their issues with staying up with their kids. However, after I began to do some more research the list of other disabilities where sleep problems are part of the disability is long : blindness, ADHD, Down’s syndrome, epilepsy, muscular dystrophy, muscular sclerosis, post-traumatic stress syndrome, anxiety disorders, spina bifida, –  whew that list is long!

So, as I finish writing this at almost 1 a.m., for the non-disabled just know that many times having a disability means no sleep or impaired sleep and be a bit more understanding. For persons with disabilities out there, can you share about your experiences with sleep? Are there any disabilities that I have missed out? Talk to me, people.

Signed,

Sleep Troubled PWD in Trinidad

On Being a Catholic Christian with Mental Illness

So, I’ll tell you what inspired me to write this: One of my friends was disgusted at this Facebook post from a “Prophet” in a particular church that basically said certain mental illnesses are “syndromes that we adopt when we WILLFULLY disobey the word of God”

prophet

Yep. Someone really said that foolishness in a church where people were expecting to hear some semblance of the Word of God. (The correct thing is that mental illness is due to a number of genetic, biological, psychological and environmental factors that doesn’t have a crap to do with a person’s moral character or lack thereof) Of course, your girl was up in the comments section with the quickness to spread some awareness but meh rude answer is not why I am writing this post.

This situation caused me to reflect on my experiences as a Catholic Christian with a mental illness, namely bipolar disorder. My experiences have been like Clint Eastwood’s movie- “The Good, the Bad and the Ugly” So let’s start to unpack some of them.

“The Good” – over the years, I have had good relationships with a handful of church people after my diagnosis and stay at St. Ann’s Psychiatric Hospital in the early 2000’s. Two very special people continued to have relationships with me just like I was the same old Nicole and they are my friends to this day – the kind of friends that even though sea water and married life separates all three of us, we can still pick up like nothing ever happened. When I was in hospital, another priest who I had an acquaintance with came to visit me in psychiatric hospital and it was so huge for me. It was such a light in that time.

Once I got out of hospital, I had support as well, I would say that I had the fortune to have two spiritual directors from the age of 16 till about 34. Both of them are now deceased. They both provided wonderful support to me and my deceased mom but moreso, myself. Once I became mentally stable and started moving on with my life, the relationships  with my respective spiritual directors were not affected. Both priests did acknowledge the illness and its effects but they concentrated on making me a whole person in faith. I am tearing up a bit now because all four of these persons were a huge part of the reason why I did not leave the Catholic Church after diagnosis. Two are now gone and I will share the post with the other two so that I can tell them how much I owe them a debt of gratitude and love.

“The Bad” – I always seem to encounter well meaning  but overly enthusiastic church people (Catholic and non) who want to pray the bipolar away and who feel it is demon possession. I am wary of people who , within minutes, hell seconds of hearing my diagnosis  and not hearing the whole story are like” God wants to heal you completely”

Also, trust and believe, when any person of faith starts to attack medication and tell me not to take them, there is a laser beam side eye with the quickness from me.

In a church counselling session, I disclosed that I had bipolar disorder as I do in all medical and therapeutic situations. The person look at me and asked, “Bipolar disorder? Is that where they does get violent?” Believe you me, it took all my self-restraint not to answer back with the quickness, “Normally no, but I can make an exception with you, if you wish.” I just decided to be mature and answer a flat “NO.”

“The Ugly”- The bad for me came after coming out of the hospital. I don’t know why or how the circumstances played out how they did. What I do know was at the time, I was an active part of a Catholic church group who would go to pray with family of its members when they were sick or recovering. I don’t know how or when the memo got missed but it did get missed with me after I got out of the hospital. But for the two friends, I described above, I was very isolated. I remember reading once that everyone breaks out the prayers and casseroles for people who have cancer or heart disease but for persons with mental illness – silence. I could only nod my head in a agreement because I lived it.

The end result (at least for me) was a serious case of church hurt. For about six months, I could not stand to even enter the church. I eventually made up my mind to go in and just be about the Eucharist and its healing. My motto back then was ” If I am not wanted, at least Jesus in Eucharist wants me” I went to Mass but stayed away from church groups for many years. It was ugly for me because it got to the core of my faith.

Also, church people affected my romantic relationships. One church person advised me that I shouldn’t marry which messed me up for a bit (thank God I eventually ignored that and I am now happily married). In some of the relationships I was in, the families who were church folk did not like the idea of me with my bipolar-“ness” contaminating their possible bloodline and so made those relationships difficult.

For me personally, thus far, it has the good few individuals who kept my faith in God and the Catholic Church intact despite the bad and the ugly. However, for me, it is the ugly that until now, has meant that I keep my mental health activism in a box and my faith life in another when it comes to being a church community. I am now seriously thinking about integrating the two. Let’s hope I can do it successfully.

Pastorally, however, I would say that the church (small c) and the Catholic Church in particular still has work to do to deal with members of their flock who have mental illness and to train those in ministry to deal with persons with mental health issues. Stats say that at least one in five persons will have to deal with a mental health issue. The spiralling crime rates and the breakdown of the family will ensure that the church will be dealing increased instances of post-traumatic stress disorder, grief issues behavioural disorders in children, sexual and physical abuse, etc. The Catholic Church (and by extension any other Christian church) can’t afford to put its head in the sand on this one because in many cases, the priest or the ministry leader is the first person that people call on when they have issues.

And, finally, YOU. Yes, you – the average, everyday believer sitting in those pews or outside those pews. In this time of high crime, immorality and lawlessness, YOU must realize that you are just one murder, one robbery, one rape,  one cheating spouse, one job loss, one loss of a relative away from a serious mental health problem.  Having those mental health issues are not about a lack of faith but about the effects of extreme trauma and emotional pain on the human nervous system.

So talk to me, Catholics and other Christians, what you have to say about church and mental health issues?

#VacationMode

So, I am writing this on my cell phone while in a hotel. As per habit, I usually save most, if not all of my trip pics and details till after the trip. Safety, y’all!

This one was close. My packing looked like:

Yep! Like until 20 minutes before the car came to take us to the airport, I was like that!

My heroic efforts to shut down and shut off continued in the car and  in the airport, when I was still dealing with texts and emails for business. My husband was already in chill mode and I was not winding down. However, once I got on the plane, that was it! I was out, biotches.Like literally. I feel asleep on the plane.

That finally flipped the switch and now I am here, reflecting and journalling by the pool outside my hotel room. This year has definitely taught me the need to be strict about rest and relaxation in order to refuel. And so, without further ado, bye!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“I believe that whenever you are privileged to have more – whether wealth,education, power, status – then that privelege rests an onus upon you to be humbly empathetic to those are less privileged than you. You are obligated to humbly learn about their lives and use your privilege in the best way possible to make their lives better. In turn, using that privilege makes you better.” – Nicole Cowie

Ladies in Disability…..The sisterhood

So, this I ended up in a meeting with two of the scholars in the emerging field of Caribbean disability theory. For those of you that don’t know, disability studies is an academic field in and of itself. It is an emerging field but it is more established in the UK and the USA. In the Caribbean, it just about being born.These ladies who are pioneers are Dr. Jacqueline Huggins from Trinidad and Dr. Annicia Gayle-Geddes from Jamaica. So imagine, these two heavyweights and lil ole B.Sc. me.

You would think that the discussion would be disability heavy (and it was). You would think we would talk about  disability- policy and laws, programmes and international agencies. And you think that the talk would be technical and boring with plenty big words.

You could not be more right and yet more wrong. Yes, we talked shop but it was relaxed and casual. It started with hugs all around and ended with hugs. In between, we talked about our ups and downs and our lives. We were all just sisters in that room who were passionate about what we do and supporting each other.

It has struck me as I have started as an activist that I have been lucky to find a spot where I have found sisters, sister-friends, friends and one auntie within this  disability struggle for rights. Some who I talk to everyday, some who I see maybe monthly (like Dr. Huggins) and some like Dr. Gayle-Geddes, who I see online and when she is in the country. Some who I talk to for a particular project or event. Some who taught me at undergrad and some who I serve with on committees.Some who share my interest especially in psycho-social disabilities. All of these ladies have nurtured and supported me in my life as person with a psycho-social disability, as an activist, hell just as a woman.

So when I hear discussion about female mentors, I guess I am lucky(?). I don’t know what it is to not have female mentors, peers and colleagues.

So this post is to lift up these ladies …….I owe you all a debt of gratitude and cheesecake!!!

So how is T & T really doing on International Day for Persons with Disabilities?

So, today is International Day of Persons with Disabilities. This year’s theme is “Achieving 17 Goals for the Future We Want.” The 17 Goals are in reference to the UN’s 17 Sustainable Development Goals (SDG’s) and the role of the goals in building an more inclusive and equitable world for persons with disabilities.( UN.org ) 

But how does T & T really stack up against these goals and against the spirit and letter of the UN Convention of the Rights of Persons with Disabilities?  

Yes, Trinidad ratified the Convention of the Rights of Persons with Disabilities (CRPD) on June 25, 2015. That is a big first step, BUT it is only a first step. We made another step a year later on June 6, 2016 when the Consortium of Disability Organizations (CODO) meet with the Joint Select Committee on Human Rights, Equality and Diversity of the Trinidad and Tobago Parliament to discuss challenges faced by persons with disabilities (PWD’s) in accessing services provided by the T & T Government (video here). Members of the disability community got  chance to speak on areas such as health, employment, education, accessibility and legislation.

One really important recommendation that was made that the existing National Policy on Persons with Disabilities be reviewed and brought closely in line with the CPRD.  So, that is two big steps forward, right?

Not so fast…..here  comes the one step back. In end of October 2016, the T  & T disability community received a new Draft of National Policy with Person with Disabilities. Note, I did not say the community was included on a committee to make suggestions about the policy’s improvement. I said, we received an already re-drafted policy to make comments on. We were then given only three weeks to comment on said policy in writing. THREE WEEKS FOR  BOOK-SIZE DOCUMENT. Oooo000kay, so much for policy-making that includes persons with disabilities from the beginning.

And, then the disability community began to read and analyze said policy. I don’t know what I can diplomatically and kindly say about the numerous shortcomings of that policy. My colleague, Dr. Jean Antoine, can  and did it much better than I ever could in her articles in the Trinidad Newsday, Part 1 and Part 2. All I can say for me, personally, is that at the end of the whole review exercise, I felt like I needed a massage, chocolate, cheesecake, a stiff drink and my bed. The whole policy was filled with so much errors and misinformation that it was a tiring task to review at best. It was obvious that whoever did that draft did not have the input of persons with disabilities in doing that draft in the first place. I hope they get it right by the next time, the disability community has to consult on this policy again ( because we surely sent in some stiff comments.)

And so, this is symptomatic of how I generally feel about how  Trinidad and Tobago is really doing in our journey to a society that is inclusive of persons with disabilities.

TWO STEPS FORWARD, ONE STEP BACK (or even two depending on the situation)

We can start off, the week on Sunday with the hopeful headline Blind Woman Pursues Ph.D. at UWI but sink so low just one day later to the headline, Vote Denied: No Wheelchair Access and no one helpedSo a few of us are getting to the highest level of education but we still are denied access to vote.

We gain progress a bit but that progress is eroded in other areas. I don’t have the time or the space in this post to talk about all the areas but continue to read this blog and you will find out. It can make one really frustrated at times to talk about it  but I think that we, as community choose to continue to fight for our rights.

So besides, the Draft National Policy dropping in November, something else happened in November that gives me a bit of hope. Disability organizations and activists, under the auspices of CODO, have come together to form the first Trinidad and Tobago UN CRPD Steering Committee. Our purpose to monitor and comment on how the Trinidad and Tobago Government honours its commitment to the United Nations Convention of the Rights of Persons with Disabilities. We have committed ourselves to produce that report by June 2017.

So, in short, how do I feel about how Trinidad and Tobago is moving towards an inclusive society on this International Day of Persons with Disabilities? Mixed but hopeful. Frustrated but fighting. And ultimately, Trinidad and Tobago’s community of persons with disabilities,  will continue to move forward ever and get to the point of backwards never.


How I got to see an Uncle Ellis look-alike wining….

So, it’s Sunday night and the huzzie and I are feeling a little idle. Normally, on alternate Sundays of the month, there is Latin Dancing at the neighbourhood bar a block away from our home. Thinking that tonight was the night for Latin, we decided to go.

On our way to the bar, we pass the neighbourhood panyard (yep, where we live is kinda lit) Tonight, there was a small crowd of youths there, dressed scantily and DJ playing loudly. We just thought it was the beginnings of a Sunday night dance and went on our merry way to the bar. When we got there however, it turned out that we had the wrong Sunday night. Bar is dead. Dang! So we buy a couple drinks. Then somehow we came up with the brilliant idea to go check out the party we passed on the way to the bar.

So, drinks in hand, we went to said party……Except it wasn’t a party. We sat in the bleachers to scope things out – only to realize that we weren’t at a real party. We were at a fake one! Lemme explain – apparently we had happened upon a soca video shoot for the soca artiste Sekon Sta. The song, IMHO, was alright. What made the shoot though was this dude we saw on the bleachers.

My boy was this grey-haired, kinda scruffy dude who could have been Uncle Ellis’s brother. And he was lit all by himself. Just play the music and my boy was gyrating, jumping and dancing like if it was 1999. He was actually more lit than the extras in the party scene. He was enjoying himself so much that the director actually called him off the bleachers into the video to act as hype man to the rather unhyped extras. And – it worked! The extras loosened up and  they got a good shot. After the shot was done, the director said, “Thanks for the vybes, pops.”

So, I hope  the Uncle Ellis look-alike’s shots don’t get cut. Maybe we have discovered Uncle Ellis 2.0. Either way, it was a half-way decent random ass lime.