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