MS, PMS, SOS AND OTHER CRIES FOR HELP

            The day Kathy (Kate to you) and I found ourselves watching a Jerry Springer show and laughing until we cried, I knew we had hit rock bottom and the only way to go was up.

            It is an amazing experience to see a lovely, vibrant, young working mother stricken down with a disease that is not accompanied by a lot of physical pain but more than its share of mental distress.  Can you imagine not being able to find your kitchen or to remember your birthday party with exception there are pictures to remind you.

            We were to learn that she has MS that is the cognitive kind…not the physically crippling. She was unable to do the usual "readin’…‘riting and ‘ritmetic".  It was a day of celebration when she used the microwave successfully and much later, could partially master the telephone, which remains a challenge to this day.  Her short-term memory was lost.  She was so disoriented but amazingly still could remember her checking account number and her social security number.

            One of the hardest things for a person with Kate’s type of MS to cope with is the fact that people always say, "You look so good".  This is still happening and she does look good.

            I am so sorry I didn’t start and write a journal in the beginning but I was so overwhelmed by the whole situation and so totally unprepared for what was to happen to us in the next few months that when I look back I think I was in a very bad place myself.  I also think that none of us realized it was going to continue for so long.

            There is so much in my memory bank now regarding the happenings and there is a lot I think I just blanked out.  There was so much to cope with.  True, she did not have much pain, but she was very depressed, withdrawn, exhausted, sad and overwhelmed.  She was like a small child at times.  In the evenings I would read to her.  However I wonder how effective I was at the time.  Once she had a panic attack and I was scared to death.  I didn’t know what to do so I just walked out and shut the door.  Maybe it is a miracle that we got to where we are.  I guess you can never be prepared for everything.

            I became the mother to an 11-year-old and a 17-year-old.  The teenager thought the grandmother maybe came in on the turnip truck.  But she forgot the grandmother had also had children of her own. There were lots of disagreements, but we prevailed and came out of our experience unscarred and a beautiful relationship emerged.  I now know my year with these girls was a gift that I appreciate now.

            I have learned so much about girls today…waxing, tattooing the g-unit and the Asian invasion.   It was lots more information than I will ever need or wanted to have and made me so thankful to be part of my generation.

            This situation was hard on mother and daughters.  They needed her and she did the best to rise to the occasion, but it was so hard for her to understand and try to cope.  They provided their share of problems, but as time passed became real team players.  They tried so hard with their mother and have emerged two wonderful daughters helping and supporting their mother in her fight with MS.  They are real angels.

            Words seem to say it all…"mad-sad-glad-had".  Mad…because I had to be there.  Sad, because I had to be there.  Glad because I could be there and most of all Had by all the people who stood in our way when we tried to get insurance, disability or just try to function in this society.  A whole book could be written on the time spent trying to get benefits for Kate so she could manage to continue to live. The red tape involved was horrendous and we seemed to go through this process pretty much alone.  There are files full of all the work it took.  People on the other end of a telephone line can be rude and heartless and have no compassion. You become your social security number.

            Recently, other avenues have opened.  I do not believe the next person will have that much difficulty in establishing eligibility for these different programs.

            I think of many things and somehow memories come back.  I remember New Years Day of 2003 when I popped into Kate’s bed and we had coffee, just like we were real girl friends. That is what we became.  We did everything together in the beginning.  Sleeping was the only time she dared be alone.

            I remember the first time Tim (her brother) came to visit.  He was and is such a Godsend.  He came to go with her to get her third steroid shot.  He just did for us all weekend and took over the cooking.  But I can remember him leaving and we were both sobbing and I know he felt like he was leaving a sinking ship.  He was right.  Things got pretty low before they started to improve.

            There was so much paperwork between the both of us and it would pile up and I seemed to have no control. I could not balance her bank statement and no longer could balance mine.  I think I just kept us afloat on many levels, but probably not in a very productive way.

            There are many angels in this story but I will not mention names, because I am afraid I will miss someone. I hope they have been successfully thanked. Without them we would never have made it.  We were so dependent on everyone.  True, I had a car, but Kate couldn’t be left alone.  So our first angel appeared and did our first big grocery shopping. I had to learn to cook again.  She was our resident handyman and she continues to serve in that capacity to this day.  Then we had a Merry Maid…one of the Babe’s.  There was The Boss angel who called everyday to check and to sometimes talk to Kate and sometimes to me.   That was an answer to a prayer for me.  She was very kind with many big and little things she did for all of us.  She was my connection to the real world.

            Then we have the female relative angel…enough said.  She was another babe who was beside us all the way and still is.  We are fortunate we have her in our lives.  And her oldest friend angel came as often as possible.  Another angel was the brother and he was the biggest angel for us both.  He came as much as he could and gave us long distance support as much as possible.  It is hard to be an angel long distance and difficult.  All in all, we were very fortunate that there was this stupendous support system.  God was good when he sent all those angels.

            There were multitudes of angels who prepared food, delivered and took time for a chat. We needed that so badly.  Small things are sometimes the most important.  The Friend angels would just drop in and later take Kate out for awhile.  Some would bring a latte or flowers or something special from the grocery store.

            The transportation angels were a blessing because our youngest girl needed to get to the functions she was involved in so two special ladies were always there…mothers from the past.  Then the ex…always available to take his turn.

            The ex met the challenge, took up the slack, did odd jobs, listened, and did kind things. He has been and is a big angel.

            And we have a new angel…Alan.  He has devoted many hours to being Kate’s advocate and helped her meet another goal.

            I must mention that all these angels continue to serve.

            Must mention the nurses.  Oh my, we had a Dukes mixture.  We needed a nurse to give a weekly injection.  The first was an old friend, very gentle, and we enjoyed her visits as she was having an Internet romance, so it was like our own soap opera.  Then came the army nurse… stern and business like.  Each week she had a new accident or problem to report and then the shy one.  We had a Sandpoint nurse who was special.  Her cousin nurse helped us along the way with explanations and advice.  We had an IV therapy nurse, Dorothy, who went beyond the call and cleaned up a cat mess.  And lastly was Marie, the nurse from hell, representing a home health agency, who arrived at the door talking on her cell.  She kicked her supply boxes into the house, and then threw off her shoes and entered bare foot. To top it off her feet stunk, as well as her body.

            My southern Idaho friends met the challenge and called me once a week, which keep me centered and with the real world.

            Kate and I were together constantly of course.  After she could go in the car I would take her to the grocery store and she would stay outside.  She couldn’t go inside.  By the time I would get the shopping done she would be pacing.  We laughed because the little old grey haired ladies were box boys, and they would take the groceries to the car and then this able bodied young matron was waiting and complaining about how slow we were.  Go figure.

            We would eat lunch "out" quite a bit.  One of our favorite things was to go to the park, sit there eating our McChicken sandwhiches pretending we were a couple having an affair and meeting there for lunch.  How sick is that?

            We enjoyed going to Denny’s and the waitress got so she would ask, "Your regular?”  We loved the Pad Thai at the Noodle Boat and the cute little sexy waitress.  We looked forward to the oxygen guy, Charlie, who brought my oxygen to the house and brought sunshine into our lives regularly.

            I have driven all my life, but in recent years just in Sandpoint and only very rarely in Spokane, so Issaquah driving was very different. I was constantly in the wrong lane, not turning when I should, running over the curb and getting honked at. I always thought they could see I was "Grey Haired."  A couple of times I did some scary things and Kate didn’t react.  Then when she was better I repeated and I said, “Are you scared?”   She answered, "Yes, but I won’t remember in a few minutes.”  We had to have a sense of humor.

            I sound like a real martyr, but I am not.  The truth be known I was completely human.  I cried, I used my favorite cuss word overtime, I was mad at God, I was very impatient, and complained much too much.  I was in a dark place, but those memories have faded and I think I look at life a little differently now.

            We are now almost three years later.  Kate has improved so very much and does so many, many things she could not at the beginning.  However, her memory is still lost to her and those numbers continue to be a problem.  I have always felt she would turn the corner someday and she would be the girl we used to know and love and I still feel that way.  God works in strange ways but He seems to be taking His time.

            Our time together was a blessing.  We learned to love each other all over again, probably in a different way.  As she got better we had many unhappy times, very often ending with tears, but we learned to weather the storm and each time were better for it. We are a true mother and daughter in every sense of the word, something to be envied.  I love you "Kate".