Leave no stone unturned. There was a time when I was younger and without a physical disability. I always tried new things. Somewhere along the way I started to accept the status quo but if you don't try new things, you stay in the same old place. As long as you are alive you can move forward. You will not always succeed but failure is just another stepping stone to success. It is a learning experience. I have always been a perfectionist. If I couldn't give something my all out best and do it well then I didn't want to do it at all. i had very high standards. I have learned that just trying something is my all out best. I no longer compare myself to others and their successes. I compare myself to post stroke day one and day two and I am amazed at how far I have come. Holy Cow. i still have frustrations and my soul still aches for the former me. I still face obstacles. Many obstacles. I still have problems. Many problems. But it is like I am starting all over again, trying to discover who I am, what I am Good at, what I am Not good at. I do not have the same set of skills but I still have potential. I may have to cross three bridges instead of one but I can do it with some extra work. It is more difficult but I am strong. I can adapt. I will not let others define me and I will continue to explore all the possibilities. i will fight for me in my own way in my own time.
When I was in the hospital either someone told me I was paralyzed or I overheard it in conversation. I don't know which. I wasn't upset or afraid. i just thought "Now what?" . It wasn't until many days later that reality struck and I began to understand the consequences of paralysis. Then it became a real part of my life. Hmmm. was I in denial or shock? i think it was denial. i argued with a doc that yes I could walk. i insisted I could. i then found out that I couldn't even stand up much less walk. If we continue to see ourselves as mobile and normal in our dreams, then why doesn't the brain get the message? Why didn't I get the message that I was different? Makes you want to get out the super glue and glue all those wires and synapses back together. It sounds simple doesn't it? My therapist used to tell me to talk to my brain and I would have long conversations with my brain. Something must have worked because I can now walk. It isn't a pretty walk but I get from Point A to Point B if it's not too far. Good work Brain.
THANK YOU for being here my friends. Strokeboard has made such a measurable difference in my life and i want to thank each and everyone of you. I'd be out on planet Jupiter without you. Well meaning family, friends, therapists are all reassuring, but it is you, fellow survivors, that i come to when I cry and feel scared and lost. You are my soulmates that understand and stand with me through it all, you are the wind under my wings. Much love to all of you.
Two years post stroke and suddenly today I can move my thumb. I will admit that I did give up after many many ups and downs. There was no movement whatsoever in my paralyzed hand. I don't know where this will lead but I am back on ghe rollercoaster and excited for the ride.
The way I look at it surviving is learning to live with half a life and thriving is living at full steam. so you are living at full steam one day and out of the blue boom you are taken down by "it". You are taken down in so many ways you can't even describe it. So you lean over pull up your boots and try to go on. i at a " soul level " i don't understand the attitude of OTs. everything is geared towards adapting to your new life, to learning how to survive. and they encourage you in this new way of looking at the world. They encourage you to do things no matter what the risk and to feel proud of all the clumsy attempts at being normal.. The first time i went to my closet and dressed myself without anyone assisting or watching out for me i fell into the ironing board and ended up prone on the floor tangled in the ironing board and iron and waited for hours for someone to find me. my OT thought this was wonderful because I "tried". Never-mind I could've broke my hip, or wrist or leg, or hit my head and had another bleed. Because of this I have been encouraged to do normal things no matter what the risk. Yesterday i picked up my dog and took her to the door squirming away in my one good arm to put her outside to go potty. Now a normal person should be able to do this with one good arm so why can't I. as i bent over to put her down my balance was off and I fell on my hip. i tried to remain calm and getup. my plan was to hold onto the wheelchair and get up on my knees and get up. I locked the wheelchair or so I thought i made it up only to have the wheelchair roll away from me and i fell a second time on my hip. the next time I tried to get up i had lost my strength. No matter how determined I was to get up it was not going to happen . Yes I could do it in therapy under perfect circumstances with a mat beneath me and not a hardwood floor. the normal people in the house thought i should be able to do it since I am getting stronger and I did it in therapy with a gait belt on. Often i know when my body can or can not do something, i know when my balance is off and I feel unstable but I keep getting told it is all in my head (yup) when I say I can't do something. today, I won't go into the whole story, but I tried to do laundry and ended up with a half gallon of liquid detergent, allover the floor and wall and closet door. i do not feel proud of myself for this. Why should I? yes, I can get by, I can survive but i Don't want to settle for survival. i want to thrive. no one encourages thriving. i know it is hard work and I work hard but i also need to listen to my own body and stop letting others push me to trying things my body is not ready for. Why doesn't anyone else "get it"? Frustrated. Am I rambling? Getting back to surviving and thriving. I have an overwhelming urge to be creative and no practical outlet. It is like I have this hurricane of creative energy inside of me waiting to be released, to express itself with no tools to do it. Guess I need to get out the coloring book again. I want to go and do and feel like I am in a straitjacket. There is a soul inside of me screaming to get out.
My husband took me clothes shopping for my birthday. What a treat. I admit i was fearful of the whole dressing room scene but the salesladies were very helpful and understanding about my husband going in the dressing room to assist me. I have lost 40 lbs since my stroke and truly needed clothes that didn't fall off of me. For many months food tasted and felt strange due to damage to one of my facial nerves and i ate very little. Shopping and changing clothes so many times was akin to a very tiring therapy session. It was a lot easier than going into a public restroom with my husband and having to announce that there was a man in the restroom. Yes,it can be done. Takes courage and a sense of humor. Everyone was very sensitive and understanding during my shopping spree. Of course i wanted the pretty dresses but they aren't practical for therapy appointments when i am on my hands and knees and are more difficult when toileting. Since i am relegated to easy pull on shirts and pull on slacks i did the best i could in trying to be current and fashionable. It is not my style at all. I felt like it is what i call nursing home wear. Women you will understand but the men probably will not. It's comfy like pajamas but not very attractive. It's "at home" clothes. One day i will be able to do buttons and zippers again. One day i will be able to look at myself in the mirror again without crying. I am working on it and i will get there. It just takes soooooo loooong. One dsy this will all be a memory.
Many ups and downs but i always go to therapy and i always give it my all and something extra. Sometimes i give up on full recovery but never on improving where i am today. The difference between try and triumph is the umph. If i don't recover it will not be for lack of trying it will be because that's all there is. I'm not happy with that but that's who i am.
Noooooooooooooooo!!! Tired of hearing the old cliche. No i am not still the same. I am different. My life is different. I will never be who i used to be again. I am that brain damaged woman hobbling down the street with the wide eyed gaze, the odd smile,moving at a snail's pace. People feel they have to tell me how good i look for "someone who has had a stroke". I may be brain damaged but i am not blind. And it's not just looks. I am a shattered soul, inside and outside. The tell me i am a new normal. No i am not. I am a disabled old normal. Give me a break all you well intentioned normal people. Let's be honest. Iam a cripple and all your optimistic platitudes will not change that. Bring it on. Call me a hero for surviving. I don't have a choice, all i can do is survive. i keep wondering when do i stop doing therapy five days a week. When do i let go and accept with grace and fortitude? Other people have jobs. I have therapy. Never give up, never give up. When do i get to return to a normal life? Don't you just love it when someone tells you changes can happen ten years down the road. Should i put my life on hold for ten years waiting for a miracle! This does not encourage me. My new aspiration is to be a Walmart Greeter. I feel like i am living on a different planet. Good morning. How are you today? We have bananas on sale today. I had one with my oatmeal this morning. I am going to buy a bunch on my lunchbreak and make banana bread....if someone will help me. Please don't buy all the bananas though. Save some for me. Halloween costumes are on special today also. Time to stock up on Halloween candy for all those trick or treaters. The best selection is right now. Btw i applaud the Greeters. They always make me smile. Thank you walmart for putting one of us front and center. Thank you for the wheelchair scooters. But could you make the aisles a little wider so i don't get tangled up in the women's clothing. I end up wearing half of what i scoot by. Time to go and get ready for therapy and hear about how awesome i am doing this week....soooooo much better than last week......all my hard work is paying off .
Five months in and everyone keeps saying "Look how far you've come". Yesterday i walked and talked at the same time! First you learn to stand, then you learn to sit in a wheelchair and do toilet transfers and bed transfers. Next i used a hemi-walker. I walked with a staff and then a cane. All of those with a Gait belt on of course. Safety first. My first fall was smack down on a tlle floor in the bathroom. My wheelchair was on top of me and my husband was laying on top of the wheelchair. I'm not sure how all this happened. I just know i was at the bottom of the heap shaking and screaming, "Get the F@@@ off of me!" That was my first and my worst but not my last. All falls are scary. You are like a turtle on his back. Vulnerable and helpless, your pride shattered. Just when you feel you are improving -- the fall happens.. I always need to recompose and rest afterwards. Maybe take a pill and have some ice cream. The first time i walked unassisted and on an impulse, a feature of riight side brain stroke is impulse decisions, it was about ten feet to my wheelchair. I just thought: i can do this and i did. Angels were helping me. Sometimes you just gotta go for it. I can slowly walk i just can't stop myself from falling. That is the down side. We are not talking "normal" walking.It is total focus and concentration. Any other sensory input and i am a goner. I can get in and out of the car now. Yesterday i changed the toilet paper roll on my own without dropping it and without using my teeth. Yup. A new reality. Have been watching The Roosevelts mini series on tv. Franklin contracts polio at age 39 and .is paralyzed from the chest down. In his search for healing he buys an old mineral hot springs in Georgia. He opens it up to the disabled as a therapy camp. When a patient gets depressed and frustrated he takes them to a mountaintop at sunset that has an amazing view to restore their soul. I keep thinking about that. How we all need beauty in our lives. We all need to balance the bad with the good. Don't let go of the things that make you smile. Embrace them and hug the joy out of them. I can't make the bad things go away but i can increase and double up on all the special good things. Seek pleasure.
My husband and i had just returned from an extraordinary river cruise in Europe two days before. I was ready to go back to work and get back in the swing of things but i had caught a cold on the way back home which was quickly turning into bronchitis. Coughing, coughing, coughing. My husband was outside doing chores in the yard. Should i call the doctor or should i just suck it up. Coughing, coughing, coughing. I was coughing so hard i was choking. I went into the bathroom because that is what you do when you are sick. I coughed so extreme that i thought i was going to have a stroke if i didn't stop. I don't know where that thought came from. And then it felt like my whole head exploded. That lasted a very short time and i became very sleepy. . I looked at the toilet and decided that i could lay down there and go to sleep. It seemed like it would be awkward and not too comfortable but when you are super sleepy it made sense. The next thing i know my husband is there telling me to smile and to raise both my arms. I thought i did both fine. Oooooops. I was wrong. Next he told me to put my arms around his neck and dragged me out of the bathroom. For some reason i couldn't get my left arm to work. But no big deal. I was calm and didn't really care. He was holding me on his lap and I was resting comfortably. He said he was calling 911 because he thought i had a stroke. And i thought he was crazy. I felt fine, sleepy but fine. When he started talking to 911 i became upset with all his foolishness and told him to hang up immediately. Then i really got upset when he gave them our address and directions to ourhouseand started screaming, " Don't tell them where we live or they'll come out to our house." Can you spell Denial with a capital "D". You may have to be a woman to understand this next part but it felt like my pants were pulled down and the last thing i wanted was a group of young good looking EMTs and fireman to show up in my bedroom with my pants pulled down. I kept yelling at my husband to pull up my pants and he kept ignoring me.Finally i felt hands on my hips tugging at my clothes. By this time i was truly annoyed and started slapping at the hands. Then a deep male voice which did not belong to my husband whispered in my ear, "Mam, i'm just trying to pull your britches up." I cooed sweetly,"Thank you." I don't recall ever seeing the EMTs, or the ambulance ride to the hospital. I don't remember the hospital until i was on the heliport being transferred to a Life Flite helicopter. I do remember opening my eyes to read the logo on the helicopter so i would know who i was travelling with. I'm not sure i knew why i was being medivaced to a different hospital but knew i must be in serious trouble. I felt peaceful and calm. My only concern was whether or not i was going to ride inside the chopper or in an airlift basket on the outside. If i was going to be on the outside i wanted to ask for extra blankets since it would most likely be windy and cold. I asked if the helicopter provided wine service for the passengers ( i work for a winery ). The nurse and pilot seemed amused. I thought it was a reasonable question. I wonder if i was on drugs at that point. I had a strong sense of peace and well being. As we lifted off i remeber thiinking about near death experiences and the famous light at the end of the tunnel beckoning you to the otherside . I decided that if i ended up in that scenario it would be best to make up my mind if i was going to follow the light or not rather than at the last moment making a rash decision. I was curious what was on the otherside and what heaven looked like. But on the down side, i might be choosing death and not come back. It was important that i choose wisely and cosider all the pros and cons. It was a dilemma that i might be faced with because i knew i was in grave danger. I made my choice but the light never appeared and so i am alive.
I don't recall landing in Portland at the hospital or the ER or Ct Scan, MRI, Angiogram, or anything. The next thing i know i am talking to a Neurologist and he is asking me why i am not very friendly. Duh? I don't know where i am or what is going on and he wants me to be chatty? A week follows in the hospital where i remember some but not all. At some point i learn that i had a sizeable brain hemhorrage in my right motor cortex and that i am paralyzed on my entire left side. I dont know who told me or how I reacted.