Everybody can pinpoint a time in their life when their world went on its head and never really righted itself, and I am no different. I was born with Spastic Quadriplegia, a form of Cerebral Palsy. However, my turning point just came in the form of a second lifelong disability. Fifteen years ago I was diagnosed with Bipolar Disorder. Honestly, when I learned about my Bipolar Disorder at twenty-two, I didn’t know how to deal with challenges to both my mind and body. In order to function on a daily basis I take four pills a day to control my moods. I won’t bore you with their generic or scientific names, but I will tell you their colours. Red, blue, yellow and orange. Hence the title of my essay, “One Woman’s Journey to find her Rainbow.”
My objective for this piece is to inspire hope for those of you who are feeling hopeless. Maybe you have been just diagnosed, or maybe you have been struggling with two disabilities for a long time and cannot get a handle on them. My story is definitely not one to tell you what to do. It’s a story of hope and reassurance that the struggles in your life will get better. I just wanted to remind you, I’m not a doctor or a mental health professional. Please see a doctor about any concerns you may have. Last but not least take all your medications as prescribed.
I was diagnosed with Spastic Quadriplegia at one year old. My parents learned how to care for me and cope with having a physically disabled daughter for twenty-two years, and then another curveball was thrown at us, in the form of Bipolar Disorder.
This second disability, first reared its ugly head when I was in grade Ten. When I left the public school system because some of the kids were mean, my symptoms were, throwing temper tantrums and later, laughing out loud for no apparent reason. Initially, I felt as if I lost my independence yet again when I was diagnosed with bipolar. When I moved out of the family home at Thirty I found a new form of independence through my voice.
At William Rudd house where I live, I have learned to become my own advocate, which is to stand up for my health and well-being. Becoming an Advocate is something I’ve learned that is invaluable to my independence, and even though I can’t stand up for myself literally, I can voice my wants and needs when it comes to my health literally.
Due to my cerebral palsy, I always knew I was different because when my abled-bodied friends were going to dance or sports classes I was going to speech or occupational and physiotherapy appointments. Doctors didn’t even clue in that I had cerebral palsy until I was missing milestones that children were mastering at the appropriate age. I went for my one-year eye check-up, and the doctor said I should go in for more tests. My speech therapist didn’t believe I could communicate orally so my mum recorded me singing with my grandma to prove that I could communicate, and ever since then, I’ve never stopped.
As I matured, my able-bodied friends seemed to disappear and halfway through the tenth grade my parents and I decided to take me out of the public school system to do homeschooling due to teachers who wanted to intimidate me rather than reach my goal and make me a more independent person. I had a great TA who taught me all my subjects and I took an extra year, graduating with a 3.8-grade point average.
I know my cerebral palsy won’t get worse. After all, it is a condition, not a disease. People think it’s easy being in a chair but it’s not. I’d much rather be on two legs than deal with a clunky wheelchair all day. But I can’t change what’s at hand. I can only look for the rainbow amongst the clouds and encourage others to do the same.
for whatever reason this year triggered it substantially. Maybe it was because my brother and sister were newly engaged to their respective partners and got married three months apart from each other. I’m not blaming them I just felt like I was being left behind, and was expected to be happy and carefree like I always am. Unfortunately, I was nothing but sad and feeling hopeless. I didn’t know if I would ever be OK again.
Right before my sister’s wedding, I started to believe that I could tell the future and had laughing fits about nothing. I told my family and my sister called the mental health hotline. They told her to take me to the hospital right away. I remember the doctor giving me an Ativan and sleeping for most of the next day.
For a woman who didn’t even like to take Aspirin if one part of her body was aching, going straight on to 4 medications was jarring. At first, I refused to take them, but my dad said “no, you have to.” With all these changes happening in my siblings’ lives, I wanted to be there for them, but, how could I be there when I wasn’t really “present”?
I’m lucky that I lived with my parents at the time of my diagnosis because they made sure that I took my medication correctly. I’m so thankful that they were able to keep me on an even keel for a long time. I probably wouldn’t have taken my medication properly or at all if I was by myself. In this way, having Cerebral Palsy and needing care was a blessing.
I still and will always have monumental challenges to overcome from these two disabilities, but I can’t use typical methods to overcome them. Instead of running around the block to relieve stress, I spin around in my chair.
I always had to rely on my family and my familial closeness because of my cerebral palsy, so it was easier to rely on them when I had to for my bipolar disorder. They already knew how to be there for me in a caretaking capacity. Even though I didn’t always show it, I’m extremely grateful that they were there for me because I would be lost without them.
When I finally got the opportunity to move out, after waiting two years, a place called Rudd House had an empty room and it was, and still is, the perfect fit for me because I can have freedom but still be cared for when I need it. Rudd House has become my second home and it’s a unique and supportive situation because all of the people who live here have physical limitations but are mentally very capable. We are a small care facility of twelve beds and we can all understand each others’ particular struggles.
Due to my lack of mobility, I have to rely on other means of redirection. One of the key ways I redirect bad thoughts is by listening to happy or uplifting music on my Google Duo Max. As a result, the bad thoughts just seem to fly away.
I’m not going to sugarcoat this, having two disabilities is challenging. On my bad days, I think sometimes it’s a curse. And I think “what did I do to deserve this?” But then I quickly shift my focus. I can’t walk around the block or do yoga to release my frustration, so I replace those things like turning up a good song like Pink or whatever pop song is on the radio and jam to it or do my version of dancing which is bopping my head along to the beat or doing my version of the robot which is tilting in my chair. .
Pink’s song “All I know So Far” is my number one song to pick if I’m in a great mood and I “dance” to it frequently. I also love her new song ”Never Gonna Not Dance Again.” Not unlike the video it makes me want to speed up and down the grocery aisle with my chair. But things cannot always be bubblegum and rose-coloured glasses. When I let the darkness and sadness creep in Josh Groban’s “You Raise me up,” reminds me of my parents and how much they love me. Josh Groban’s soprano voice makes me feel calm and supreme when everything in my world goes upside down.
A new strategy my doctor has taught me is grounding. It is when you use all five senses; smell, touch, taste, sound, and sight to calm yourself down when you’re anxious. One of the senses I have to modify is my sense of touch by holding onto the comforter. This allows me to anchor myself to the bed instead of anchoring myself to the ground.
I have also found an escape in audiobooks. Instead of going for a jog, I put on an audiobook which eats up hours instead of eating up miles. As a result of my physical limitations, I cannot physically turn pages, so audiobooks are great for me. I just say “play” or “pause” when I want to stop it. As a result, I think I’ve become Google Play’s best customer.
But when the techniques above fail to work, I just close the door and cry it out. I’m happy to report that this technique is my last resort and I’m using it less and less. I’m not suggesting that you do this every day. I call it my “pity party” which I do once a month.
Finally, I think I would be remiss if I neglected to mention my true passion, which is poetry and creative writing. It has created an outlet for me to turn my bad thoughts into beautiful works of art.
Fifteen years ago my life changed, but somehow, with the help of my family, psychiatrists, music, audiobooks, and writing, I’ve been able to make sense of this diagnosis. As a result, I have learned to manage my two disabilities. Lastly, I can leave you with one piece of advice, there will always be clouds in your life, you just have to find the rainbow at the end of the storm. My mom also has this saying when I’m having a bad day which is “ Tomorrow is another day” which has become a lifeline for those days that I feel down or uncomfortable in my own skin. She always manages to make me feel better with just that simple sentence. On my webpage this is my personal motto, Diversity need no invitation because we all belong. – Jillian Bleackley
To learn more about Jillian visit her web site at: https://www.jillianbleackley.com/
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