By Tracey Brooks and Richard Brooks
Jan. 21, 2010, was my 45th birthday. Richard, my husband, was returning from England later that night. so I went to dinner with family and friends. After dinner, I took the dogs out and went upstairs to wait until Richard came home. Everything was fine. In the morning, we were making breakfast and making plans to celebrate my birthday together over the weekend. I was making smoothies in the kitchen, and then I don't remember anything else. Richard had to tell me the story months after, but the story goes like this:
I don't remember collapsing to the ground. Richard told me that I said, "My head hurts, call someone." Richard tried to assess the situation as I was having convulsions and he was calling 911. The first responders arrived and transported me to Marlborough Hospital. One thing I remember was the helicopter. I guess I had an out-of-body experience because I was unconscious, but I recall talking to the pilots. I was walking with them, and they said I was going to be OK.
I was in the University of Massachusetts ICU for four weeks after suffering a subarachnoid hemorrhage, but I don't remember much. Well, I remember a lot of nightmares, and I guess sometimes it was real. The team needed to put me in an induced coma. While I was in the coma, I suffered from vasospasm and had a stroke, which the doctors prevented from enlarging by taking me for four intra-arterial treatments. I also had a stomach feeding tube (PEG) for nutrition and a tracheostomy in order to liberate me from the ventilator.
Imagine spending my 45th birthday with family and friends and the next day I was almost dead. When I woke up after six weeks, I was in the rehab hospital, and I couldn't speak or walk. It was dark. I was freezing, and I was frightened. I couldn't fathom what happened to me. My head hurt so much.
I couldn't do anything. One of the therapists gave me a chart to point out: husband, pain, mother, bathroom and things like that. I had hours of therapy every day, and I was exhausted. I think on the second week I could walk with two people and a harness. A couple steps, that was it. My right leg responded better, but my arm was in a sling, paralyzed. On the 15th day, Richard took me outside in a wheelchair because it was warm and sunny. I didn't know what happened to me yet. I couldn't comprehend anything; I just wanted to go home.
It was a Sunday and Richard asked me if I knew where I was. I didn't at first. I pointed, and he told me our house was close. And I just cried and cried to go home. On the 16th day, we decided to leave rehab and go home, much to the dismay of the doctors as I was supposed to stay for several months.I wanted to see my dogs.
March 8, I came home. After I was home, I couldn't do anything. Richard had to do everything for me. We had home healthcare: nursing care, occupational, physical and speech therapy every day. When I could walk well enough, I would walk one of our dogs just once around our garden, and soon I could make two laps and then three. Soon after, I was walking down our cul-de-sac and up the street.
Prior to the event, I was a writer and editor, so I was so frustrated that I couldn't speak or spell. But I was determined to get better. Richard called my trainer at the gym, and we embarked on this journey to be well again. April came and the at home healthcare service said I was doing so well that I graduated to outpatient status rehab. I couldn't drive, so Richard took me to my appointments. I had grueling sessions at the gym, speech therapy, occupational and physical therapy. By August, I was driving with Richard. It took a while, but by the next year, I was driving myself to rehab and the gym.
One of the things I wanted to try when I was well enough was golf since it was something I was good at before. It took a couple of years, but now I can golf again. I'm not great, but I enjoy it much more. Another one is spelling, reading and writing. I'm sure a lot of people take things like that for granted.
When you have lost the ability to communicate, the world is a dark and scary place. Love, support, family, faith and grace have gotten me through the dark days, and a lot of speech therapy and patience.
Now it's been almost five years. Now I'm a lefty because my right arm is compromised somewhat, and I type with my left hand only. We have cried a lot, laughed a lot and now I'm certain I'm stronger in so many ways. Sure, I do have some deficits, but everyone has something. I could have crawled into a ball and cried every day, but I chose to fight. I embraced therapy because everything is therapy for me. Breathe. Listen to the wind and buy some wind chimes when you nap (and you should nap). Hug your children, your pets, your partner and your family. Tell them you love them. When I was in the midst of my parents dying, I was so determined to be strong and not cry, I didn't hug them enough. Crying is a good and healing process. Walk, if you can to clear your head. Go to the beach and smell the salt air. If you can't go to the beach, just breathe and be patient. Everyone has bad days, but when you are having a bad day, get back on the horse tomorrow and be grateful. Life is so fragile-tragedy and triumph.
Snap your fingers. That’s how long it takes for everything to change. It was Friday morning, Jan. 22, 2010. I returned from England the night before and I was five minutes from leaving for the office. Tracey was making a smoothie, and I heard the blender stop. As I went to see why the dogs were barking, I found Tracey in a slump on the floor. As I cradled her, she was conscious for a few moments. She said “my head, my head.” I asked, “Did you fall and hit your head?” She said, “No, no. My head, my head.” Suddenly, with open eyes, her gaze became empty and she began to gag. As I told her to stay with me, I called 911. At that moment I knew that my world had changed forever. How and to what extent, I didn’t know, but I knew I couldn’t worry about that and that I had to stay in the moment.
Fifteen minutes later, when I arrived at the ER of the local hospital, Tracey had already been transported by helicopter to the UMass Memorial NeuroICU. I met the ER doctor and he explained the severity of the bleed and of her condition. I left immediately for UMass Memorial Hospital. When I arrived, a nurse, nurse practitioner and a neurosurgeon met me. They explained the situation and plan of action. Tracey was unresponsive. I needed to stay calm and think clearly, yet I was terrified and so scared on the inside. Tracey went into surgery, and I was told to go home and get some rest. A few hours later, the neurosurgeon called and said that they were able to successfully coil the aneurysm. The next day she was awake for a few hours but she decompensated and was in a medically induced coma.
Around our house, Tracey did almost everything. I didn’t cook, clean or even pick up voicemail. She organized all maintenance services. We had three black Labradors, and she home cooked for them. I didn’t even know the number and passcode to pick up our messages!
The next days and weeks were the toughest of my life. I managed the household, the three dogs and I was there with Tracey in ICU every day. I read as much as I could about subarachnoid hemorrhage, stroke, recovery and rehabilitation. I ate, but tasted little. I barely noticed color or temperature. I kept a diary every day, and I cried a lot, but I never lost hope. I spoke constantly to the doctors and nurses. And as she lay there, I rubbed her arm and reminded Tracey that I was there and we were together.
Here’s the lesson: If I could do it, anyone can. I did the best I could and tried not to worry about the past or the future. Just worry about the next few hours, then the next. Then the next day. Stay focused, stay patient.
She spent four weeks in the neuro ICU, mostly in a drug-induced coma. I sat by her side every day not knowing if she would survive and if so, what deficits she would have. She arrived at the rehabilitation hospital unable to walk, talk, eat or drink and didn’t know who I was. I was by her side day and night. When she had therapy, I was there to help the attendants and therapists as needed and, if not, I was right there for encouragement and support. There was painfully slow but steady progress. And then after only three weeks in rehabilitation, I brought her home.
She required 24-hour care, and I either provided it or arranged for it. Either way, I never left her side. When she started home occupation, physical and speech therapies, I arranged the appointments and was there during the sessions. When we moved to outpatient therapy, I brought her and stayed by her side during every session.
Throughout, the myriad decisions which I was asked to make was overwhelming. How was I going to know what was the "right" decision? There was no guidebook. You make the best decision you can at the time.
Now it is almost five and a half years since her aneurysm ruptured. We have come a long way. Tracey continues to make progress, albeit slow, but there is progress. Especially in the area of confidence, communications and independence. Living life is therapy. I have retired and we are taking time to appreciate the small things. She can drive, shop and cook. Her ears were re-pierced. We work with and around her deficits. We laugh a lot. Laughing is vitally important. I am often asked, is life back to normal? Well life is a new normal, and just like the old normal, some things are good and some are not. But that is life. Life is a challenge, and ours have shifted, but we know that there are so many that have it much worse than we do.
Here is another key lesson. I didn’t and still don’t spend much time thinking or worrying about that which has happened. There is nothing I can do to change that. What I can do is to focus every ounce of energy and love on what is or will happen. If you think you can, or you think you can’t; you’re probably right!
Tracey’s journey back to a new normal has been arduous, yet enlightening. Given the sobering statistics around SAH survival, her recovery has been nothing short of a miracle, and her attitude, commitment and dedication has been and continues to be inspirational.
The transition from husband to caregiver wasn’t easy, but it needed to be done, and I did it. The transition back from caregiver to husband is another story. Life is a team effort. In reality, it was impossible to make this transition back to just husband. Today, it is a balance, and I am perfectly happy to enjoy this balance and its many ebbs and flows. Sometimes it is caregiver and sometimes it is husband, and that’s OK.
What I quickly realized was that while there is a lot written about SAH and stroke, there was no handbook for the loved one/caregiver. What was I supposed to do? Here is what I wish I had known:
- No good outcomes are fast. Recovery and rehabilitation take time. Prepare for a long marathon. An arduous, yet enlightening journey.
- Stay by their side. Tell them you are going to be there. Reassure them that you will lead them back. Rub their arm and forehead.
- No need to be overly pessimistic or optimistic. Just be hopeful.
- Take it a few hours at a time. One task at a time. One foot in front of the other.
- Make sure to eat well and to rest. You can’t help if you are weak, ill or tired. Let family and friends help as they are willing and able.
- Keep a diary. Whenever you have a thought, write it down. Write down the events of each day. It is cathartic and a healthy release as there is really no one to talk to who can tell you what to do.
- I kept entries in the diary for almost four years. At first hourly/daily, and then weekly ad finally monthly.
- Progress does not end after two to three years.
- Make sure to be in love with who your loved one becomes, not who they were.
- Although things will never be the same, a rich, full life lies ahead. #StoriesofHope #LeadingInsights