A Stroke Survivor's Story
The Day I Told Death to Take a Hike
It's sort of my birthday, aka, anniversary of the day I told death to take a hike...
I don't usually do this type of thing... Facebook is fun for staying in touch with people, creeping on people's photos (not that I ever do that, of course) and, let's admit it, farming. But sometimes it can be more than that—if the cosmos are aligned and people who need to read certain posts read them, remember them and file them away for future reference. This little "note" aims to be in the latter category. of course, that assumes anyone will actually read it, which may be questionable.
Do you, by chance, live in the fake world where only old people in nursing homes, or your great aunt ethel, suffer a stroke? Well, my job here today is to dispel that fakery. I can do that because, frankly, I have been there and done that.
Four years ago on this very day (May 16), while reading the information-packed latest issue of "Nick Jr." magazine with my "just turned five years old five days ago" daughter Heather ... with my "going to turn two years old in five days" son laying in his crib, just waking up from a nap ... I thought to myself "Gee, why do I feel like I just chugged a bottle of Jose Cuervo without any salt or lemon? Why am I stumbling around like I am at a Grateful Dead show? Why can I see Heather but not actually say anything intelligible to her? Why can't I feel the right side of my face? Eek ... why am I falling on the kitchen floor? And why is she looking at me like that? Scared and stuff? Oh ... I get it ... something CATASTROPHIC IS HAPPENING TO ME RIGHT NOW."
My brave five-year-old gets the phone and I am somehow able to press the numbers to dial my dad and Diane. I can't actually talk, but they immediately recognize that something CATASTROHPIC IS HAPPENING TO JULEANN RIGHT NOW. Heather sits by me, pats my head, rubs my forehead and acts brave. I have a very clear thought at that exact moment (even though I cannot verbalize it) and I think "okay, god (or whoever), if this is it, fine ... I really am not in a position to argue the point. If my life is about to end, that is really okay ... but, please, please, please, please, please ... do not allow me to die on the kitchen floor with my five-year-old daughter alone with me. Don't do that. Please don't do that. Don't take me until someone else is here to be with her. Don't. Do. It."
And that is all I can think. Over and over and over again. And then dad and Diane arrive, and the burden was lifted. She will be okay because someone else is here. Now, god (or whoever), do it. Take me now, but it doesn't happen. Phone calls are made. 911 is called. Diane is trying to tell them what is going on, what medications I am on ... I try to tell her ... the words come out sort of like this ... "blah, blah, blah, ookidity bookidy" ... (don't quote me on that). And then she says to my dad, "I think she had a stroke". I try to tell them that is not possible. I am only 38. I have two little kids. I need to see Van Morrison in concert before I die. I need to grow old with Scott and have grandkids and go to Italy and see the Grand Canyon and swim in the Pacific ocean and see my nieces and nephews grow up and make sure my mom knows how much I love her and ... Basically I've got a lot of stuff to do. Then I realize that I am not going to do any of those things because I, clearly, have had a stroke. I cannot speak. The thoughts are clear in my mind, but they do not come out. I can't really feel my right side. I have had a stroke.
Ambulance arrives. I leave my home, my safety zone, my life. I am on a stretcher. My kids are crying uncontrollably as I am wheeled out the door. I am somehow able to communicate that Diane must travel with me and she does. And I hear her sweet voice from the passenger seat talking to me the whole time. We arrive at the hospital. I am assessed. They show me simple pictures of simple images. A feather. A boy with his hand a cookie jar. A woman standing in front of an overflowing sink. A key. I can identify all of the images in my mind, but I cannot verbalize them.
The most amazing neurology resident takes my case. She is seven months pregnant and she looks in my eyes and i believe her when she tells me I am going to be around to raise my two kids. I see my sweet husband and the fear in his eyes and I feel instantly guilty for what I am putting him through. They administer IV tPA, the clot-busting drug. An amazing neurology resident tells me I need to have a cerebral angiogram, where they will insert a catheter in my leg, snake it up through my body and into my brain where they will try to "grab" the clot in my brain and pull it out. They tell me I could die during the procedure I was certain that I would die. I recall my sweet husband leaning over me as they wheeled me into the "special procedures suite" aka the room where I was going to die. I thought, "gee, i will never see him again because I am not making it out of this room alive." And I can't even really tell him all I need to tell him, so i just kiss him.
Iwill spare you the details and give you the short version. They found the clot, tried to get it out with the "merci catheter". It had more or less already solidified and would not budge. I was awake during the angiogram and heard the play-by-play, which was surreal to say the least. I spent two days in ICU, two days in the "step down" ICU and six days on a regular medical floor. I missed heather's preschool graduation and ben's 2nd birthday. By the time i was discharged, the hair on my legs could be braided and I was put on a blood thinner. The medical folks have no idea why I had a stroke. I have had every blood test known to man run and they have no real answers. I have seen doctors in Pittsburgh and Cleveland and everyone just sort of shrugs their shoulders at me. I think about my stroke every single day, mostly just as a passing thought. I try to find meaning in it and sometimes I think I had a stroke and survived so that I can be an example to other people who would perhaps otherwise ignore symptoms. It isn't only old Aunt Ethel who experiences stroke. I did and I had no pre-existing conditions, nothing in my history to indicate such a catastrophic thing could happen.
If you have sudden numbness or weakness in your face, arm or leg ... if you have sudden confusion, trouble speaking or understanding ... if you have sudden trouble seeing in one or both eyes ... if you have sudden trouble walking, dizziness, loss of balance or confusion ... if you have sudden, severe headache with no known cause ... you need to get help as soon as possible. tPA works only if administered within the first three hours of onset of symptoms. tPA not only saved my life, but gave me back the life I lived prior to the stroke. When they say "time is brain" they are right. I know of at least one person who thought of me and my stroke when their spouse showed stroke symptoms. They got to the hospital and she survived. That is powerful stuff and the reason why I bothered to write this down tonight.
My life today could be radically different had I not been able to get help as quickly as I did. While I generally hate to be "preachy", here goes: this life is such a gift and you don't know when your time is up. One minute you are reading Nick Jr. magazine to your kid and the next minute you are on the kitchen floor negotiating with god to not let you die in front of your daughter. One minute you are on vacation in New Jersey and the next minute the oncoming car veers off course and your entire life is altered. Forever. One minute you feel some slight abdominal discomfort and before you know it some doctor tells you the spot on your pancreas looks "suspicious" and eleven months later your family is planning your funeral. Seriously, life changes in the blink of an eye. Cherish what you have, tell the people you love that you love them, realize what is truly important. Treat everyone with kindness because you truly do not know what battles they are fighting. I may have been able to tell death to hit the road four years ago ... who knows what will happen if he knocks on my door later today, but I will continue to live every day as if it were my last, because one day, I will be right. I hope you do the same.