by Rebecca Aubut
Terry Shiavo and her story tugged at the heart strings across the nation, and divided people across the world. It doesn’t matter whose side you were on, everyone had an opinion and the feelings were strong and felt by everyone. While Terry Shiavo has now passed, during the ensuing struggle over her rights, Kate Adamson was fighting right along with her. A survivor of a stroke at the age of 33, this mother of two young girls shares her story of survival and the long road to recovery. Supported by her husband, Kate spent months relearning how to eat, walk and simply live her life again. She has written a book about her illness and recovery; ‘Kate’s Journey’ is from her point of view – from her early struggles to communicate to her present life as a motivational speaker, Kate’s story will make those think twice about terminally ill patients and the possibility that they may not be as sick as they appear.
Recently, during the tumultuous media coverage of the Terry Shiavo case, Kate took some time out to answer some questions about her life and her book chronicling her illness and recovery.
RA: What is your first memory upon waking in the hospital?
KA: My first memory was being taken to the hospital. I wasn’t in a coma. I was aware of my surroundings but unable to move or communicate and let people know I was in there. I was absolutely terrified.
RA: Did you realize what had happened to you? If not, when did you become aware you had had a stroke?
KA: Not until it was explained to me while in the hospital from my husband. I had never been exposed to stroke, the warning signs, nor had I been around someone who had suffered a stroke; it was all new to me. I had always been so fit and healthy. Stroke? Isn’t that something that happens to someone who is old and has white hair? How could I have suffered this at 33?
RA: When did you become fully aware of your surroundings?
KA: I was in and out of conscious during the ICU phase because of medications but I knew I was pretty ill and in ICU. I just did not want to be that person lying there.
RA: How did you first begin to communicate?
KA: It seemed like forever for me because I was totally trapped and had to somehow let people know I was in there. Communicating was something so simple, yet so powerful; blinking my eyes. I would blink as Steven, my husband, would point to a letter in the alphabet, until I could spell the word out. At that point my husband put a sign above my bed ‘ THIS IS A HUMAN BEING LYING HERE. PLEASE TREAT HER AS A PERSON, SHE UNDERSTANDS EVERYTHING YOU SAY’.
RA: How long before you spoke your first word, and what was your first word?
KA: “Home” I wanted to go home. I did not speak for quite a while into the rehabilitation phase, and it was very slow. My lungs had collapsed and I needed to have enough breath to get the word out.
RA: Please explain the process of rehabilitation. What types of therapy & physical rehab did you undergo during your recovery?
KA: I finally was transferred into a rehab where I spent three months in acute rehab. It was the hardest work out in my life. I was admitted on the spinal cord team because of my condition. It was a team of people who helped me to recover each having their role in my recovery. Occupational, physical therapists, along with several others. (The book explains the process in depth, from Chapter 6 and on.)
RA: How long did it take you to walk, eat or speak without any assistance?
KA: After being discharged from the hospital, I went home in a wheelchair. [I had] difficulty with swallowing [anything] but a soft diet. Speech was slowly getting better but that got stronger over time. I went into an outpatient program for a year. Within 6 months I was using a walker but still needed the wheelchair. My goals were different and I strove to meet those. I still had to learn to adjust with a body that functioned differently.
RA: How emotionally and physically draining was the therapy?
KA: It was emotionally draining; things that were once so simple to do, were impossible. I cried all the time. I didn’t know if I would recover and no one can tell you what you will get back. Initially, the therapy was draining. I was using muscles that had not been doing anything, and everything hurt. I was exhausted. I was used to bench pressing 50 lbs and now I couldn’t even lift a plastic cup! I was devastated but knew I had to take it one day at a time and focus on what I could do. I felt like quitting, but kept pushing myself.
RA: Was there a turnabout day, when the rehab began to pick up in a positive way and it didn’t seem like a burden but became a blessing?
KA: Probably towards the last month of the hospital stay. I was beginning to see where I had gotten stronger. I couldn’t wait to finally go home. That was an adjustment, being around two screaming kids and the dog.
RA: How much do you feel therapy played a role in your recovery?
KA: Well without the therapy, I would not be here. I have basically come back from only being able to blink my eyes, to now leading a life again. Without the therapists giving me direction and me willing to take it, and the opportunity to get therapy, I would not be here. Without these resources, I would have been shipped off to a skilled nursing facility.
RA: Do you feel that, without these resources, you would have been able to recover?
KA: Unfortunately, I do receive letters and calls from families without the resources, where the patient is in a skilled nursing facility. A recent letter I received [was] from a mother, whose 46 year old son has been in a nursing home for 11 years. She stated they were ignorant to the treatments available early on. She wished they had known. We have millions of people in this country without health insurance. Without it, and you have a catastrophe, you will not get treated; it’s that simple. I constantly tell people, “It’s the squeaky wheel that gets the grease.”
RA: You are a huge proponent of Terry Schiavo and her plight, and have been very active in supporting Terry’s family and their goals of trying to reinsert the feeding tube. Some people may argue your injury was different from Terry Schiavo and that is why you were able to recover and that Terry is beyond help. What would you say to those people?
KA: They are right, I wasn’t for Terri because I had an identical injury. I was for Terri because I am a human being who knows what it is like to be disabled and to be counted out. Maybe Terri couldn’t have gotten up but we will never know now, because she never got the chance. When a patient is shipped off to a nursing home, where they are basically being written off, it is next to impossible to get the patient rehabilitation. Without therapy in the early stages, one cannot recover fully. I believe, if Terri was given that chance, she would have recovered to some extent. Each recovery is different and no one can say what the patient will get back. I was extremely fortunate to have an advocate fight for me, even though he was being told there was no hope. No one thought I could get better. If I hadn’t received the opportunities that I did early on, regardless of my condition, I would have been labeled by the medical profession in some manner. By not being treated, I had less than one chance in a million to survive.
RA: How important was your husband and family’s support in your recovery?
KA: It is critical that you have a strong advocate. I knew with my husband looking over the shoulder of the doctors and insurance company that things would get done. The girls [Kate’s daughters] being 18 months and 3 years old didn’t truly understand. It was important for my husband to explain to my 3 year old that mommy hadn’t died. He showed her a photo of what I looked like in ICU, even then she wouldn’t believe it. “That’s not my mommy.” It wasn’t until the rehabilitation phase that the children were introduced to seeing me on a daily basis when my therapy was done for the day. They were more interested in the candy at the hospital, but at least they could see mom was alive.
RA: Do you view life differently now?
KA: I treasure each day. I try to live in the moment. I think we all sometimes dwell on what we don’t have, or want to be like. I am still partially paralyzed, [with] no use of my left arm and I have to wear a brace on my leg to walk along with a considerable limp.
RA: What was your life like before the stroke, and how has it changed since?
KA: Prior to my stroke I was very much into fitness, working out 6 days a week, a busy mom doing life. I loved shopping, definitely a heels and pantyhose type gal. I have had to let go of those! I think though, I was shallow in a lot of ways. I found those hidden strengths that I never knew were there. Many people are stuck – paralyzed – and cannot move forward in their lives. When they hear or read my story, they can relate to something in their own lives. It gets them taking that first step; which is what I had to do and that started with the blink of my eyes. My life today is rich, and not in material things but rich in depth and helping others. There is a wonderful quote by Abraham Lincoln, ‘You make a living by what you get, but you make a life by what you give.’
RA: As a motivational keynote speaker, what inspirational message do you promote during your speech?
KA: Focus on what you can do, not on what you can’t do.
RA: What feedback do you get from people after they hear you speak?
KA: On a recent speech given last month to case managers and a rehabilitation conference, the comments were as follows. “Our evaluations reflected that you were our number one speaker at our conference.” Comments such as, “Kate is awesome, a phenomenal woman, a person with deep inner strength and passion.”
Just a couple more comments from another conference. “The speaker has phenomenal strength and courage, what a moving and motivational speaker.” “You certainly know how to captivate and motivate your audience.” I receive so many wonderful comments, but as a speaker I like to be real as I’m on the platform. I sprinkle humor throughout the presentation, laughter is so important. Every lesson I have learned, is from me going through it. As a kid growing up, my parents said go right, I went left! But life is about learning from our mistakes. Going through this experience has taught me so much.
RA: Tell me a little about your book, ‘Kate’s Journey.’
KA: The book started out as a healing process for me. It became a booklet and later developed into a book. It is being used in universities for the PT students, the medical profession and many stroke survivors, their families and able bodied people. It is an uplifting story showing the strength, determination and perseverance to fight back and regain my life. It’s not only inspiring and a profoundly moving story, but has commentaries from a leading neurologist throughout. I think knowing the warning signs and risk factors of stroke, can help one. Many people don’t realize this can happen to someone young; 168,000 people under the age 65 experience stroke each year. For many families who are told there is no hope, the book gives so much encouragement. As a comment from a reader said, “Kate’s Journey takes the reader for an emotional ride, but leaves you convinced that with hard work, strength of will and the power of God, anything is possible”~ Laura Warfield.
RA: When you look back on your life, what legacy do you hope to leave behind?
KA: She made a difference and touched many lives, while saving lives.
Reprinted with permission from Five Star Reviews