Monday, August 14, 2006

Six Months

Dear friends,

This is a glimpse on the most exciting and frightful six months of our lives.

Six months ago, one Friday afternoon Jan was trying on nail polish colours that would match her dress. She was getting ready for romantic evening, the Oakville church had organized a dinner and dance. It was going to be our first Valentines together. But it never happened. An aneurysm in Jan's brain bursted sending her to the hospital. That night, she was operated to clip the broken vessel. She was operated again two days latter to clear the hemorrhage and take out the damaged cells. The next morning, I still had in a plastic bag her cocktail dress and her fancy shoes. I was in the waiting area of the critical care unit where Jan laid in a coma. She didn't move, nor she could open her eyes or talk. To breath, she used a respirator -a computarized machine that did the breathing for her-. She was connected by dozens of wires to a computer that kept constantly checking her heartbeat, her blood pressure, and other vital signs as well as the pressure of the fluids in her cranial cavity. She spend two weeks in that unit until, she opened her eyes and began moving a little the left leg and arm. Occasionally, she grinned, partly in pain, and partly because she recognized the voices of those around her.

Then, one day, we celebrated because she was taken from the respirator. She was moved to the Intensive care unit where she spend two more weeks. The movement on her left side continued to increase; she also began pronouncing a few words hard to understand, she talked in a hushed voice. One day another patient in the unit got an infection and as a safety measure, all the visitors were forced to wear a gown, shoe covers, gloves and a mask. Jan made progress day by day. We celebrated that she could sit down on a special chair, it was about the end of the third week.

At the end of the fourth week she was moved to the general ward. She still had tubes through her nose into her bladder and an IV in her arm. To drink water, she used a little sponge on the tip of a stick to prevent her from choking with water. She constantly used her left leg to kick her blankets off. She could not go to the washroom by herself, which was a challenge for her sense of independence, in fact she was totally dependent on the staff to eat, wash herself or even to pass water or have a stool. On occasion, the nurses tied her to the bed frame because she would pull the IV and the feeding tube off. One day she pulled the catether from her bladder off, and was in pain for while. At week number six, she was aware of who she was and where she was. She became more aware of visitors and her conversation was more clear. Her energy allowed her to talk for about 30 minutes and then without any warning, she would just close her eyes and fall asleep. At about that time, I began taking her on trips to the cafeteria on a wheelchair. She would enjoy the outing for about 30 minutes and then she would just drop her head to the side and droop. She began walking with the aid of a walker. She would go to the bathroom in her room by herself. Everyone was pleased with her progress. By this time she had no tubes going into her body. For about a month she had been going home for the weekends. She could not walk up or down the stairs without help. She talked more and more every week. In one of those visits, she played the guitar; with her left hand she made the notes while I strung the chords with my right. It was quite a sight! Her stamina was increasing. She could participate in activities for a couple of hours. Still, she slept over 14 hours a day. Her head took a strange shape without the lateral bone flaps. The surgeon decided to keep them off until the swelling of the brain was under control. In spite of this, she never accepted to use a hat or to conceal the visible indentation. She decided that this was not her problem but the problem of those who felt uncomfortable with her looks. This was 100% Jan. On week seven, at the end of March, she was moved to the rehabilitation hospital.

This was the beginning of a hopefull stage. She was involved in speech therapy from the strart and later joined occupational and physiotherapy. The physical danger had been resolved, now the big question in everyone's minds was how much of her functions she would recover. In this stage, on Easter Friday, we went ot church. Everyone was at the same time surprised and happy to see her walking up to the front to take a pair of nails to a wooden cross. As Linda latter said, it was a whiff of Easter Sunday on Friday. Jan continued to improve in her walking, speech and energy. Now she could carry out lengthy conversations and walk a Kilometer. At this hospital Jan had more positive feedback and happy experiences while observing her own progress. As a survivor of ABI (acquired brain injury) she found herself battling with Aphasia and Apraxia -the inability to find words to attach to ideas and the difficulty of moving the muscles to pronounce correctly the words she could find. Physically, she arrived at this hopsital with limited movement in her right side. A "frozen" shoulder on the right made movement of the right arm more difficult. Slowly, reality sinked in and she realized that this was going to be a lengthy process in which the main challenge was going to be to have enough patience to overcome the frustration. During her stay in this hospital, Jan went back for a one day operation to get her lateral bone flaps back in. Her head looked round again. Her hair would grow back and cover the large scar that runs along the hair line from the middle of her head to the temple. She would continue now with the complex process of recovering her speech and mobility. She was discharged from this hospital at the end of May, exactly two months since her arrival. Almost sixteen weeks since the first operation, Jan was finally going home.

June and July were busy months. We moved from the house in the north of the city to an apartment closer to where our communities of support are. Packing moving, unpacking and there you have eight weeks gone. Our new place is cozy, maybe a bit smaller than what our belongings require. Jan saw this as a good opportunity to downsize and she has done it ruthlessly. She has taken the motto: all the memories that are worth keeping, are for the most part inside of your head. In the middle of August, six months after the operation, Jan can be awake now for 12 hours in a row, she will carry on a conversation for hours, she may take a short break now and then, but she is beggining to enjoy her friends again. She makes her own telephone calls, the words still get stuck and she will have to rephrase her idea to get her point out, but she will not quit. Her right arm is moving every week more and more. She said, she feels how the right hand "awakens". She needs to build strenegth but she is advancing. Last week, she took her bike and went for a ride. She has repeated this three other times, everytime a longer ride. Her concern is the limited vision in her right eye, she cannot see what is in the right field of vision, and is afraid of hitting or being hit by something from the right side. She can use the right hand to eat and has began writing. Reading is still a problem, as is following complex commands. A week ago she participated in the singing group at church, she didn't sang the actual words but kept humming to make a perfect harmony.

After six months, many things have changed inside and outside of Jan. Despite the odds against her, she has continued to rebuild her life and make the best of what she has. Her faith is steady. She believes this happened for a reason and even though she doesn know it now, her trust is in someone greater than the process, "in the big scope of things, she says, this is insignificant" , what counts is the character that we developed from this pain.


No comments: