THE WAY IT IS! After 6 years of living in the shadow of her stroke, Coleen Jones Speaks out in her first blog about second chances.

Years ​ago,​ ​I​ ​chaired​ ​a​ ​Canadian​ ​Human​ ​Resource​ ​and​ ​Development​ ​Committee​ ​whose mandate​ ​was​ ​to​ ​try​ ​and​ ​figure​ ​out​ ​how​ ​to​ ​make​ ​lifestyles​ ​easier​ ​for​ ​those​ ​with​ ​disabilities.​ ​I always​ ​felt​ ​a​ ​sense​ ​of​ ​responsibility​ ​for​ ​the​ ​fact​ ​that​ ​we​ ​never​ ​seemed​ ​to​ ​make​ ​much progress.​ ​In my previous life I ​had ​a ​significant​ amount of ​experience​ ​working​ ​with​ ​people​ ​who​ ​had​ ​disabilities but​ ​now​ ​that​ ​I​ ​am​ ​myself​ ​challenged​ ​I​ ​am​ ​quickly​ ​learning​ ​new​ ​things​ ​every​ ​day.​ ​

The purpose​ ​of​ ​this​ ​narrative​ ​is​ ​that​ ​I​ ​hope​ ​my life experiences can​ ​help​ ​someone​ ​in​ ​a​ ​similar​ ​situation,​ ​or,​ ​who​ ​sadly might​ ​find​ ​themselves​ ​in​ ​the same ​position​ ​in​ ​the​ ​future.​ ​​ ​In​ ​order​ ​to​ ​do​ ​this​ ​I​ ​would​ ​like​ ​to share​ ​a​ ​little​ ​bit​ ​about​ ​myself​ ​and​ ​how​ ​I​ ​became​ ​disabled.

I​ ​am​ ​outgoing,​ ​curious,​ ​a​ ​“people​ ​person”,​ ​and​ ​currently​ ​live​ ​at​ ​the​ ​RK​ ​MacDonald ​ ​Nursing Home.​ ​​ ​I​ ​am​ ​happily​ ​married​ ​and​ ​my​ ​husband​ ​and​ ​I​ ​raised​ ​two​ ​wonderful​ ​children.​ ​My current​ ​hobbies​ ​are​ ​reading,​ ​​medical​ ​researching on the computer,​ ​playing​ ​Scrabble​ ​online,​ ​and watching​ ​medical​ ​and​ ​veterinary​ ​shows​ ​on​ ​television.​ ​Before​ ​my​ ​stroke​ ​my​ ​favourite hobby​ ​was spending time with my​ ​flowers in the​ ​garden. I loved gardening​ ​and​ ​people​ ​walking​ ​down our street​ ​would​ ​often​ ​stop​ ​and​ ​ask​ ​for a​ ​garden​ ​tour.

I​ ​​ ​worked​ ​at​ ​St.​ ​Francis​ ​Xavier​ ​University​ ​in​ ​the​ ​Continuing​ ​and​ ​Distance​ ​Education​ ​Program. I​ ​love

 

d​ ​my​ ​job,​ ​and​ ​among​ ​other​ ​duties,​ ​I​ ​​ ​managed​ ​a​ ​Master​ ​in​ ​Education​ ​Program​ ​for teachers.​ ​I​ ​had​ ​hoped​ ​to work​ ​until​ ​I was​ at least ​70 years old,​ ​simply​ ​because​ ​I​ ​enjoyed​ ​what​ ​I ​did and​ ​loved​ ​my​ ​colleagues as well as ​supporting​ ​all​ ​our students,​ ​especially​ ​those​ ​from​ ​international​ ​countries!. ​I​ ​learned​ ​so​ ​much​ ​from​ ​them!​ ​​ ​

My husband​ ​and​ ​I​ ​also​ ​owned​ ​and​ ​operated​ ​a​ ​small​ ​business​ ​for​ ​10​ ​years.​ ​The​ ​only​ ​thing missing​ ​in​ ​our​ ​lives​ ​was​ ​that,​ ​like​ ​most​ ​people,​ ​we​ ​needed​ ​more​ ​than​ ​24​ ​hours​ ​in​ ​our​ ​day.

The​ ​“game​ ​of​ ​life“​ ​had​ ​a​ ​very​ ​different​ ​plan​ ​for​ ​me.​ ​​ ​Something​ ​that​ ​would​ ​irrevocably change​ ​our​ ​lives​ ​forever.​ ​Six​ ​years​​ ​ago,​ ​at​ ​age​ ​59,​ ​I​ ​suffered​ ​a​ ​very​ ​serious​ ​stroke,​ ​a 100​ ​percent​ ​brain​ ​bleed.​ ​​ ​The​ ​left​ ​side​ ​of​ ​my​ ​body​ ​was​ ​useless​ ​and​ ​I​ ​was​ ​left​ ​handed.​ ​I​ ​could no​ ​longer​ ​do​ ​​ ​anything​ ​for​ ​myself and instead​ ​of​ ​taking​ ​care​ ​of​ ​other​ ​people,​ ​which​ ​I​ ​did​ ​since​ ​I was​ ​about​ ​8​ ​years​ ​old,​ ​I​ ​would​ ​need​ ​to​ ​be dependent on ​somebody​ ​else​ to ​do​ ​everything​ ​for​ ​me. ​​ ​Everything!​ ​This​ ​did​ ​not​ ​sit​ ​well​ ​with​ ​me,​ ​​ ​as​ ​you​ ​would​ ​expect, and I had​ ​a​ ​very​ ​hard​ ​time​ ​adjusting.  

The​ ​next​ ​six​ ​years​ ​I​ ​lived​ ​in​ ​what​ ​I​ ​can​ ​only​ ​describe,​ ​in​ ​my​ ​own​ ​words,​ ​as​ ​a​ ​kind​ ​of semiconscious​ ​state,​ ​exacerbated​ ​by​ ​severe​ ​depression,​ ​and​ ​PTSD.​ ​I​ ​had​ ​no​ ​interest​ ​in anything​ ​and​ ​was​ ​so​ ​exhausted,​ ​every​ ​day. It was so bad that​ ​I​ ​couldn’t​ even ​hold​ ​the​ ​phone​ ​for​ ​two minutes​ ​at​ ​a​ ​time and​ ​I​ ​spent​ ​99​ ​percent​ ​of​ ​my​ ​time​ ​in​ ​bed (only​ ​able​ ​to​ ​lay/sleep​ ​on​ ​my​ ​back,​ ​as I​ ​was​ ​physically​ ​unable​ ​to​ ​sleep​ ​on​ ​my​ ​side​ ​as​ ​I​ ​did​ ​all​ ​my​ ​life).​ ​

In​ ​the​ ​spring​ ​of​ ​2017,​ ​six years​ ​after​ ​my​ ​stroke,​ ​I​ ​was​ ​again​ ​in​ ​trouble and​ ​I​ ​was​ ​unable​ ​to​ ​keep​ ​any​ ​food​ ​down.​ ​This went​ ​on​ ​for​ ​months​ ​and​ ​I​ ​lost​ ​70​ ​pounds.​ ​One​ ​day​ ​my​ ​temperature​ ​rose​ ​to​ ​104​ ​degrees​ ​and I​ ​was​ ​on​ ​my​ ​way​ ​to​ ​St.​ ​Martha’s hospital,​ ​again.​ ​This​ ​was​ ​my​ ​third​ ​admission​ ​in​ ​3​ ​weeks​ ​and​ ​where​ ​I spent​ ​my​ ​65th​ ​birthday.​ ​No​ ​birthday​ ​cake,​ ​not​ ​even​ ​allowed​ ​water,​ ​but​ ​I​ ​was​ ​alive!​ (​Some people​ ​just​ ​cannot​ ​give​ ​up!)​

​I​ ​was​ ​informed​ ​that​ ​my​ ​illness​ ​was​ ​infected​ ​gallstones​ and I couldn’t understand how​ ​could​ ​this​ ​be​? ​I​ ​had​ ​no​ ​pain​ ​there,​ ​and​ ​I​ ​had​ ​had​ ​my​ ​gallbladder​ ​removed​ ​about 40​ ​years​ ​ago. ​I​ ​found​ ​this​ ​very​ ​interesting.​ ​I’m​ ​still​ ​hanging​ ​on​ ​to​ ​my​ ​gallstones,​ ​but​ ​will​ ​have them​ ​removed​​ ​in​ ​Halifax this month.

Another hospital admission was because ​I​ had suddenly developed​ ​Tonic​ ​Clonic seizures (formerly​ ​known​ ​as​ ​Grand​ ​Mal). ​This​ ​was​ ​also​ ​interesting​ ​to me​ ​because​ ​I’ve​ ​always​ ​had​ ​a​ ​great​ ​interest,​ ​but​ ​no​ ​formal​ ​education,​ ​in​ ​human​ ​and​ ​animal medicine.​ ​My​ ​theory​ ​about​ ​my​ ​seizures​ ​is​ ​that​ ​in​ ​humans​ ​as​ ​well​ ​as​ ​animals,​ ​when​ ​our bodies​ ​get​ ​in​ ​trouble,​ ​our​ ​brain​ ​will​ ​try​ ​to​ ​help.​ ​​​A​ ​simple​ ​example​ ​of​ ​this​ ​is​ ​when​ ​we​ ​get​ ​a bacterial​ ​infection,​ ​we​ ​develop​ ​a​ ​fever​ ​to​ ​help​ ​alert​ ​us​ ​to​ ​the​ ​fact​ ​we​ ​probably​ ​have​ ​an infection.​ ​In​ my case,​ ​a​ ​doctor​ ​told​ ​me​ ​that​ ​my​ ​seizures​ ​were​ ​due​ ​to​ ​brain​ ​damage​ ​from​ ​my stroke​ ​of​ ​6​ ​years​ ​ago.​ ​I​ ​have​ ​a​ ​different​ ​theory.​ ​I​ ​believe​ ​that​ ​my​ ​brain​ ​produced​ ​the​ ​harshest kind​ ​of​ ​seizures​ ​possible​ ​to​ ​snap​ ​my​ ​brain​ ​out​ ​of​ ​its​ ​thoroughly​ ​lethargic​ ​state.

The​ ​official​ ​definition​ ​of​ ​seizures​ ​according​ ​to​ ​the​ ​Mayo​ ​Clinic​ ​(online) is​ ​“the​ ​physical​ ​finding or​ ​changes​ ​in​ ​behaviour​ ​that​ ​occur​ ​after​ ​an​ ​episode​ ​of​ ​abnormal​ ​electrical​ ​activity​ ​in​ ​the brain”.​ ​Years​ ago,​ ​electrical​ ​shock​ ​therapy​ ​was​ ​widely​ ​used​ ​to​ ​treat​ ​severe​ ​depression.​ ​It​ ​is still​ ​used​ ​today,​ ​but​ ​much​ ​less​ ​frequently.​ ​It​ ​is​ ​my​ ​understanding​ ​that​ ​it​ ​would​ ​be​ ​unlikely​ ​to have​ ​serious​ ​seizures​ ​that​ ​would​ ​improve​ ​the​ ​quality​ ​of​ ​life.​ ​In fact, the​ ​opposite​ ​is​ ​more likely,​ ​​most​ ​often​ ​people​ ​who​ ​have prolonged​ ​severe​ ​seizures​ ​will develop deficits​.​ ​In​ ​my​ ​case, I​ ​developed​ ​both​ ​positive​ ​and​ ​negative​ ​outcomes​ ​from​ ​my​ ​seizures.​ ​

Obviously,​ ​I​ ​already​ ​had severe​ ​brain​ ​damage​ ​from​ ​my​ ​stroke.​ ​After​ ​my​ ​seizures​ ​I​ ​realized​ ​I​ ​had​ ​additional​ ​new​ ​brain damage​ ​affecting​ ​my​ ​mouth.​ It​ ​took​ ​me​ ​about​ ​a​ ​month​ ​to​ ​figure​ ​out​ ​what​ ​was​ ​going​ ​on.​ ​​My lips​ ​feel​ ​very​ ​swollen​ ​and​ ​my​ ​lip​ ​and​ ​mouth​ ​muscles​ ​aren’t​ ​working​ ​very​ ​well.​ ​When ​I get tired,​ ​my​ ​speech​ ​is​ ​not​ ​clear and ​when​ ​I’m​ ​exhausted​ ​I​ ​can’t​ ​speak​ ​at​ ​all.​ ​The​ ​seizures​ ​also affected​ ​my​ ​nose,​ ​throat,​ ​taste buds​ ​and​ ​smell​.

​On​ ​the​ ​positive​ ​side​ ​of​ ​my​ ​post-seizure​ ​life​ ​something very​ ​unusual​ ​took​ ​place,​ ​and​ ​I​ ​was​ ​literally​ ​handed​ ​a​ ​new​ ​chance​ ​at​ ​life!​ ​It​ ​took​ ​me​ ​about​ ​a month​ ​post-seizure​ ​(July 2017)​ ​to​ ​get​ ​my​ ​head​ ​on​ ​straight.​ ​Overnight​ ​I​ ​had​ ​become​ ​severely hyperactive,​ ​after​ ​six​ ​years​ ​of​ ​pronounced​ ​mental​ ​and​ ​physical​ ​inactivity.​ ​I​ ​was​ ​so hyperactive​ ​that​ ​I​ ​barely ​slept​ ​an​ ​hour,​ ​day​ ​or​ ​night​ ​for​ ​almost​ ​a​ ​month.​ ​A​ ​much​ ​higher​ ​dose of​ ​sleeping​ ​pills​ ​helps​ ​a​ ​lot,​ ​but​ ​I​ ​still​ ​have​ ​insomnia.  

I​ ​was always​ ​a​ ​very​ ​serious​ ​bookworm,​ ​but​ ​I​ ​was​ ​unable​ ​to​ ​read​ ​since​ ​my​ ​stroke.​ ​In​ ​August​ ​I​ ​read​ ​three books​ ​in​ ​one​ ​week!​ ​Wonderful!​ ​That​ ​was​ ​just​ ​the​ ​beginning!​ ​

Although​ ​I​ ​am​ ​still​ ​physically disabled,​ ​the​ ​seizures​ ​cleared​ ​my​ ​brain,​ ​offering​ ​me​ ​many​ ​other​ ​opportunities​ ​to​ ​do​ ​new activities. During July and August I helped my daughter plan her August wedding at St. F. X. In September I was able to attend my father’s funeral and reception. I could not have done this before my seizures. I have very little memory of the RK before my seizures and I didn’t even know things like the fact that my daughter lived in Toronto for a year! It’s kinda like most post-stroke memories disappeared, but I remember everything before my stroke and my memory currently is about 99 percent!

I​ ​think​ ​it​ ​took​ ​at​ ​least​ ​the​ ​first​ ​three ​months​ ​of​ ​my​ ​six​ ​month​ ​stay​ ​at​ ​St​ ​Martha’s Hospital, after my stroke,​ ​to realize​ ​and​ ​accept​ ​that​ ​my​ ​life​ ​from​ ​now​ ​on​ ​would​ ​be​ ​very​ ​different,​ ​to​ ​say​ ​the​ ​least!​ ​I​ ​was always​ ​one​ ​of​ ​those​ ​people​ ​who​ ​was​ ​mechanically​ ​challenged.​ ​I​ ​couldn’t​ ​even​ ​operate​ ​a​ ​VCR or​ ​set​ ​an​ ​alarm​ ​​clock,​ ​so​ ​it​ ​was​ ​a​ ​very​ ​terrifying​ ​time​ ​for​ ​me​ ​when​ ​I​ ​was​ ​told​ ​I​ ​had​ ​to learn​ ​to​ ​use​ ​an​ ​electric​ ​wheelchair.​ ​Me,​ ​of​ ​all​ ​people! ​I​ ​will​ ​never​ ​forget​ ​the​ ​eyes​ ​of​ ​my husband,​ ​the​ ​first​ ​time​ ​I​ ​tried​ ​to​ ​use​ ​a​ ​wheelchair.​ ​His​ ​eyes​ ​said​ ​“God​ ​help​ ​us​ ​both” because I​ ​had just​ ​hit​ ​the​ ​wall!P

If you were to ask me what I dislike most about being in a wheelchair, I have a very clear and serious answer. If someone is in a wheelchair, it is most likely that they are not mentally challenged, but physically challenged!

Life continues to surprise me and I hope that my story will help others not give up, miracles do happen. Stay tuned for my next blog as I talk about my first experiences with wheelchair accessibility and some tips and tricks to make life easier for our community members living with disabilities.

Sincerely,

Coleen Jones

18 thoughts on “THE WAY IT IS! After 6 years of living in the shadow of her stroke, Coleen Jones Speaks out in her first blog about second chances.

  1. very interesting blog my husband went through the same thing over 9 years ago he has since passed away but reading your mothers story is helping me understand I am your dads cousin please keep me posted on your blogs thanks

  2. Colleen I am so proud of you! And so happy to read that you are finding positive things in a life changing event that I couldn’t possibly imagine. I thank God everyday for my health. And I think of all the wonderful times I had at your home in Guysborough. I am sorry I did t get to see you at your dad’s Wake and happy you were able to attend his funeral and reception.
    We are in florida and will be home in April! Another part of life that I am so great full for. When I return in the spring I will definitely be in to see you ❤️ Xoxo

  3. I was so happy to see you at Superstore last week, you look great. Keep up the progress and God Bless. Hugs.
    Angela Stewart

  4. Thank you for sharing your experiences. As a nurse I am very interested in seeing things from my patient’s perspective. While your journey is yours to travel it will help others on theirs. 🙂

  5. WHAT A WONDERFUL JOB YOU ARE DOING.I ALWAYS KNEW YOU WOULD COME BACK TO US.
    I LOOK FORWARD TO THE REST OF YOUR STORY AND PLEASE STOP BEATING ME AT SCRABBLE .
    LOVE YOU DEAR FRIEND AND I WILL SEE YOU SOON HUGS

  6. Your blog is amazing and anxious to read the continuation. Very happy to hear you are doing so well, miracles do happen!

  7. Thank you for sharing your story! This is beautiful. I’m glad you found strength and that your life got better with time 🙂 My experiences with Cara as a youth leaders have been amazing, you raised a fantastic person.

  8. You are one brave, courageous lady, you have been through so much, so happy to hear you are doing so much better. Keep up the good work.

  9. Such an inspirational women you are, Colleen. God love you for your pass 6 years and never really giving up. You always had such a beautiful vibrant smile that welcomed everyone. Happy to see that in these photos……take care and continue blogging….very interesting, to say the least.

  10. Coleen, you are amazing! I am so happy that you are finding positives in this life you were dealt. You are , as always, one tough little cookie!
    I remember, often, all the times we spent together. Summer nights spent on your front step, eating little pot pies! remember that? And the sunporch!!! To this day, I still wish for a sunporch.

    I will be looking forward to your continued blog. Hopefully , we may meet next summer!
    Love always,
    Luella

  11. Hello, Colleen! I went to school with you it was only for 1year,, I always remembered how pretty you were , If I can remember you may have been in the same class with me ! I really enjoyed your story , keep up the faith as you are doing so great! You were always friendly with me and the nice things you never forget ! Thanks for sharing, Linda(Veinotte) Keith Country Harbour

  12. Amazing blog, Coleen! You are one of the finest people in Antigonish and I am really looking forward to a visit!

  13. Colleen – I read this with great interest and admiration. You taught me many things when you worked at STFX – and outside of STFX and obviously you continue to be a teacher of life. I so enjoyed reading this and hope that this is only the beginning – you have much to share.
    Congrats. Loved it. Joanne

  14. I only met Cara once through my friend Michelle but thought she was lovely. I saw a ad on Facebook to read this blog. Very interesting and amazing. I wish all the best for you moving forward. Sending positive vibes your way.

  15. Oh Coleen, I read all of your blog entries and enjoyed every minute of it. So sincere, thoughtful and thought provoking. So happy I ran into you yesterday at Shoppers. I’ll be over for a real visit very soon. I need some Spring flower bed ideas. You would be mortified if you saw them 😉
    Love, Jennifer

Leave a Reply

Your email address will not be published. Required fields are marked *