A March Wind Doth Blow

Yes! March had finally arrived. My long awaited appointment was now only two weeks away. I called and checked my appointment time and made positively sure my records had been sent. Mapquest directions were printed out and tucked away in the car. What if they canceled my appointment. What if there was a snowstorm and the roads were bad. I couldn't wait any longer for this consultation. I had to know my fate no matter what it was going to be. With all this cluttered in my mind I waited and waited.

The week before the trip I called and pre-registered to insure we could go directly to the Doctor's office. I'm sure they thought I had a drink in my hand as I stuttered and slurred through the conversation. Also had a coughing fit and dropped the phone while trying to blow my nose. The patient woman laughed when I said I had ALS and really was a very sober person. I still wonder if she believed me.

KLEENEX

I have stopped wondering why I burst into tears every so often. Years ago I blamed it on hormones. Now I blame it on ALS. Somewhere in my research I was told to expect the unexpected and took that advice with a grain of salt. Now I know why. The following is a list of occasions that inspired my tear glands to work overtime.

An empty cake box

The phone ringing

The phone not ringing

An old beat up sweater

Trying to put socks on

Trying to take socks off

The thought of selling my car

Choosing music for my funeral

Listening to "Meatloaf"

Making the bathroom in time

Not making the bathroom in time

Etc., etc., etc.

No sense fighting the tears and they made me feel so much better. Funny thing, though, and I read this somewhere, too. A fit of laughter sometimes follows which makes everything okay again.

Winter

The holidays arrived and I wondered if this would be my last Christmas. Last minute gift buying left little time to think about it. Christmas dinner had to be planned and the house needed a cleaning. Christmas Eve dinner was at Jill's house. I hated the thought of the clunky brace under my dress pants. Still a bit of pride left. I managed to keep my emotions in check which was difficult watching my grandchildren open their gifts. But I got into the spirit and finally let go of myself. The innocence and wonderment on their faces drowned out the last remnants of self pity. We were having so much fun it was not difficult at all to suppress my tears. Like magic all bad things disappear when your grandchildren are around. Friends arrived and we had a wonderful evening filled with laughter. Christmas day was also a success with more family and friends and the tasty Italian meal with all the trimmings thanks to Bob. We had made it through.

January raged in cold and seemed to go on forever. My big appointment was still two months away. The fingers on my left hand began to feel strange and fear gripped me again. Paranoia reigned as I used a hand and finger exerciser to keep them strong. It didn't seem to help. My temper flared as I tried to pick up uncooked spaghetti that had dropped on the counter. It was not enough I had to use a tool called a reacher to pick things up from the floor. Now this was an insult.

February brought more cold weather. Bob and I both had pneumonia at the same time and were down and out for over two weeks. Our daughters shopped for groceries and looked in on us or called. Bob should have been in the hospital but refused to go as he was fearful of leaving me alone. So we took care of one another. Six more weeks to go. I missed the warmth of the sun on my face. On fairly nice days, which were rare, I bundled up and hobbled out to the driveway where a chair awaited me. I basked in the warm rays as if I were on the beach. I really wasn't wishing my life away. And letting the sun wrap its arms around me with a needed hug was a huge treat. Neighbors gawked at the sight but I couldn't care less.

Each day passed as I found things to do to fill the hours. Books were scattered in every room as I attempted to read three at a time and became adept at remembering the plot of each and who was who. Closets were cleaned as I reasoned my family shouldn't have to get rid of clothes and shoes that were five years old. Instructions were given to just dump the contents of my dresser into plastic bags and don't look back. My daughters scowled and gave me yeah, right, mom look. The days passed as I waited, waited, waited.

One very bright spot on a cold, windy day, my friend Sally, e-mailed me from her home in Virginia. She and her husband, Michael, offered their home in Myrtle Beach, SC to us for a week as their guests. What a gift, I thought, but didn't consider it a viable plan. I told my daughter, Jill, about the offer during a phone conversation and was scolded for not accepting this gift from good friends. I only thought of the negatives such as toting the wheelchair with us, difficulties getting on the beach and what a pain I would be for everyone involved. Boy, did I get it loud and clear. After all I'd been through how could I not want a vacation with Bob who deserved it also. We might never have this chance again with an uncertain future. I considered that it was, indeed, selfish. By the following day the offer was accepted gratefully, plane tickets reserved and the family happy we could spend this time together. Oh, well, I thought. On April 29 Myrtle Beach, here we come! And a million thanks to the Carlo family for letting it happen. What special friends.

Footprints

I love the poem "Footprints" and have read it over and over through the years. Now it has so much more meaning to me. A higher power than I is clearly picking me up on my worst days and gently putting me down when I can again cope. How do I know this to be true? Trust me.

I was reared as a Roman Catholic and was never exposed to the various religions of the world. Religion was taught as a subject throughout grammar and high school. We never questioned, only memorized, the tenets of our faith. The good Sisters infused our young minds with horror stories that were sure to occur if you broke a commandment. Their favorite statement was "woe betide you" if you didn't listen to your parents or broke a rule at school. For years I didn't know what the words meant but they sure scared the living daylights out of me. Attending a Catholic Girls College provided the same moral structure. There I would be afforded the benefit of meeting students with an open mind. It didn't happen as most had the same background as I growing up. Moral Guidance was a biggie and I was sure they gave a course in Guilt 101.

Graduating and leaving town for a teaching job in a different state was a shock to my system. Here I was out in the world thinking black was black and white was white. Not so I soon discovered and felt the guilt permeate my being as I was faced with situations I was not prepared for. There was a constant tug of war as I began to question my faith, belief system, and the mind boggling rules of right and wrong. It was many years in the making but after reading volumes of material and learning to think for myself I came to a decision about organized religion. Thus began my quest for spirituality.

I arrived at the belief that God lives in all of us. And we all live in Him. We are put in this school called Earth to both teach and learn lessons. Sometimes the hard way. One of my children was stricken with severe diabetes at a young age. My twelve year old daughter had to deal with a rare cancer that took from her the ability to reproduce. Throughout these ordeals as a mother I learned to draw on a strength and courage that seemed to fall from the heavens. I had begun to pray in my own way. The Rosary was always a part of my life. But simply talking to the higher power I call God gave me the peace of mind needed to keep life on an even keel. I learned that it is fine to ask for an answer but it is not always the one we want to hear. Still it is an answer. A dear friend who was one of the few people I felt comfortable discussing spiritual matters with gave me some sound advice. When faced with a problem listen to your gut. What you feel in there is most often the correct and good thing to do. It never fails.

A fatal illness is a strange bedfellow. After the initial shock and grief you look at the world a little differently. Things that were of concern before have little impact on you now. Everything seems clearer and you begin to look at issues in a different way. Material blessings are great but don't hold your interest as they once did. You look at the world with all its problems and the demise of morality. We take so much for granted and never stop to say thank you. Greed and lust permeate the entire social strata from politics to entertainment. Nothing is private and personal. We are bombarded with visuals and media, pollution and noise. Our country is again at war and our sons and brothers are dying. All these thoughts are central to you now. Society is looking down the road to destruction.

These are the things I talk to God about and wonder if it will ever end. Presenting oneself at church every Sunday is wonderful for the masses and I refuse to feel guilt that I do not attend. My church is in my heart and soul and there it will stay until the end of my life. If my God should judge, let it be on who I am, how I have lived my life and what I do for others. I trust his plan for me has in some way been fulfilled. I trust He will help me die with grace and dignity. I ask strength for my family. This is my one fervent prayer.

Amen

Laughter Always Wins Out

There is a balance in life now that I don't care to upset. Normalcy is necessary for all concerned. Life goes on as it should with all it's ups and downs. I have friends who are ill and dying. Concern for them and the help I can give are important to me. Support for their families is imperative. The giving always comes back in some shape or form. Having fun with family and friends can make the spirit soar. I meet regularly with friends who know and love me. They are concerned as friends should be. We talk about what is happening with my body. That over, we are back to the business at hand which is enjoying the moment, eating, reminiscing, joking and solving the problems of the world. I have been having speech problems over the past month. Hesitation and slurring of words is common. My daughters get a kick when it happens. In my frustration to get a word out correctly I will stop and let out some "loose language" which is always articulated perfectly. It happens so often my son-in-law swears I have Turret's Syndrome. We also have some dark fun making up the signals I will use if ever I lose the ability to speak. One blink of the eye for yes and two for no. Roll the eyes to signify laughing. In a comic way I tell them about my preference for the fetal position while lying down and how many pillows to use. Leave one foot out of the covers. Dress me in pajamas, not nightgowns. Make sure the bottoms are not too tight on my behind. No more bras. Leave my bottom teeth in the drawer. The list goes on and on and so does the laughter. A bit of levity is more than desirable even though the conversation is somewhat serious. This is our way of getting through important future issues. Funny but not so funny.

My husband and I have learned to really listen to one another. I need to know how he feels and give thought to his needs. He patiently holds me when I cry and hears what I'm trying to say. He tends to my every need and makes life much easier. Physically I have to depend on his strength. If I say thank you a hundred times a day it would never be enough. We are partners and need to be strong for one another. There is no other way. God bless my family and dear friends. God bless old friends who write letters and send angels and books and give support from afar. God bless them for their unending thoughts and prayers and hopes. It makes the journey bearable.

Home Again, Home Again

Trying to get an appointment within a reasonable length of time was akin to sweeping the sun off the roof. The intervention of my doctor held no importance. I was just another number in an ocean of numbers. My appointment was four, long months away. Cancellations were rare but I was on the list.

Days and weeks seemed endless. It was harder to stand for any length of time. After two months my legs were becoming weaker. I was fitted with a brace for the foot with the offensive "foot drop". It would allow me to walk with less fear of falling. It fit from the bottom of my foot to mid-calf. I had to buy sneakers a size larger to accommodate the brace. Now the right shoe was too large and two innersoles were needed so it wouldn't flop up and down. Walking was a little easier even though my feet were clunky and strange looking. Shoes with Velcro straps were summarily dismissed as old-lady shoes because that's how they appeared to me. My daughters, years ago, had forbidden me to wear anything with polyester and shoes with Velcro fit into this category in my mind. My husband with great fortitude has to force my foot and brace into the laced sneaker. No complaints from this good man. I know he must love me despite my idiosyncrasies.

In bed at night I feel the fasticulations in my legs which tell me in no uncertain terms that my muscles are dying. I pray they stay only in my legs. One night I felt them in my left arm and hope fades. I walk now like a toddler trying out his legs. Short steps while trying to keep balance. Rising from a chair takes much energy. Exhaustion is part of ALS and care must be taken to rest between activities. I sleep for hours at night and awaken weary...too tired to dress and start the day. Yet there is no giving in or so my mind tells me. I laugh and joke with my children and grandchildren but will suddenly come to tears but hysterical laughter usually follows. This is also symtomatic of ALS.

Hope holds my heart and soul together but is slowly dwindling. I can feel it in the center of my being. Moods swing from high to low and confuses me. I am tired of dancing the waltz of faith and hope. Thoughts of death wrap around my mind. I see it, feel it, live with it. I pray not for the miracle of a cure but for more time with my family. Grief takes hold as I feel how very much I will miss them. It is right and just to grieve for one's life and everyone left behind.

Dare to Hope

The next few days passed as though in a haze. We were barely able to function but muddled through, trying to behave normally. Sleep was disturbed and uneasy as we tried in vain to make sense of this outrage. I did not show anger or resentment but found myself sobbing uncontrollably time and time again. How is it possible to shed so many tears and when would they end. Would they ever end?







I continued to research but found my mind wandering and couldn't focus on the scientific abstracts on the screen. Needing a break I watched a rerun of my favorite show, "Seinfeld". It was the segment when Kramer donated his blood to Jerry who immediately became hysterical and was now in debt to his quirky neighbor. The tears running down my face now were from laughter...my favorite pastime. I returned to the computer, but now something was niggling at the back of my mind and I knew it was important. The next morning while reading the newspaper there was an article requesting donations of blood for a child who was ill. All of a sudden the knowledge that evaded me came to the forefront of my mind. Blood donation was the key and what ensued caused more confusion, some hope, and endless waiting.


Four years earlier I was scheduled for a hip replacement and was required to donate my own blood in case a transfusion became necessary. This was no problem as I had given blood before and happily did it again. There was no need for a transfusion and all went well. Then, about three months later I received a letter from the blood bank. They stated I would no longer be able to make a blood donation. I had a rare blood disease which was nothing to worry about. Or so I thought at the time. I could call for detailed information if I was concerned. Of course, the concern was for my children. The woman was glad to give me information. The disease had a name, HTLV 1/2. Otherwise known as Human T Lymphotropic Virus. But I was told not to worry. Only 2% of the infected population ever showed a sympton. Well, then, what's the chance of that happening. I took notes on the back of the letter. She said the disease had nothing to do with the HIV virus. We ended the conversation on that note.


Remembering these bits and pieces of the dialogue did not satisfy my suspicions of something very important I was missing. I knew the letter was stuffed in a drawer somewhere in our home. With the help of my patient husband we combed through every pile of papers dispersed throughout the house. St. Anthony was called upon in earnest and finally the elusive letter was found. I quickly turned it over and found the following phrase scratched on the back surrounded by my ever present doodling. This rare disease can be the precursor of MS and Leukemia. Dumbfounded is the only word to describe what I was feeling. With only a few days left before my treatment consultation for ALS I turned to the trusty internet for more information. The disease is found in tropical areas such as Central America, Africa, Japan, the Phillipines, Portugal, and various other countries. Pygmies had the disease, too, and several Indian cultures. What was going on. Drugs and needles were mentioned with prostitution thrown in just to confuse me further. People can carry it for decades and never have one symptom. Ironically, when symptoms did appear they were exactly the same as the beginnings of ALS. How did all of this relate to me. Was it possible? How had I contracted this rare disease and when. It is also passed through nursing mothers to their babies. I had nursed two of my children. Were they infected also. Help!!! What are the odds of contracting two rare diseases in such a short time. I need an answer before my hair falls out. Still, the humor survives.


Armed with this new information we arrived for the treatment consult. Doctor, nurse and Resident were in attendance when the bomb was dropped. I couldn't help but be amused at their consternation. The doctor called the blood bank for records and the resident headed for the computer to acquaint himself with this new piece of information. A few minutes later after signing papers for release information I was rushed to the lab for repeat testing for HTLV. The results would not be available for several days. In the meantime I would go home and relax. Relax???


Yet another appointment was made at which time I was thoroughly retested. Nerve and muscle tests were repeated in all four extremities and a spinal tap was administered. I was poked and probed endlessly and was glad for the four hour period of lying flat so as not to get a spinal headache. I needed the rest.


Now the ball was rolling. Receiving a diagnosis of HLTV would mean a reprieve of the death sentence. The weakness would travel no further than my legs. There were other effects but death within a few years was not among them.


I had hope, I owned hope, and could not, would not be denied hope. My kindly, gentle doctor appeared followed by the troops. Again he held my hands and said a conclusion could not be reached. I held back tears and held on to hope. It was decided I would visit the University of Pennsylvania and have yet another consultation with the head of the ALS division. A very renowned physician would see me and try to give a definitive diagnosis. I was duly dismissed, with hope, and sent on my way home.

The Telling

I don't remember the wheelchair ride to our car in the parking garage. Left and right turns were made, doors were opened and closed, and finally a blast of fresh air hit my red, swollen eyes. My best friend who had accompanied us was unusually quiet and I wished for a moment that she was her chatty self. I wanted normalcy and suddenly thought that I might never have it again. She and my husband discussed which roads would take us back to the highway. In my mind I was thinking "highway to hell" and the image of what I was to become played like a movie before my closed eyes. How could this be happening to me at 65 and just beginning to enjoy retirement. No answer would come. I was dealt a hand that couldn't be thrown away, and I would never know why.

It was early afternoon when we arrived home. My husband poured me a cup of coffee and I attempted to put things into perspective. Remembering my two previous surgeries I had to chuckle recalling how I put all my affairs in order for my husband just in case anything should go wrong. My children laughingly mocked me when I reminded them of the "metal box" where all my instructions and important documents were stored. My mom had done the same thing to me and we always made a joke of it. Once a month my mother would remind me where it was and how I was to handle her affairs. I did not want to hear it then and my children would not want to hear it now. It was ironic that now I would have to make the third and final list of instructions.

Later that day I knew the telephone calls had to be made. My children were waiting. I asked my husband to call and ask that they come over in the evening. My two sons were not available but my two daughters would come after dinner when their families were settled. Neither asked the reason for the visit and I knew they wouldn't. Although four years apart in age they were very close and could only reason it was not the best of news. They would need each other.

The girls arrived together as I knew they would. Jill, the eldest, carried a bottle of wine and Jen followed. Both had a slight smile but I could sense the tension in their voices. We opened the wine and everyone had a glass in front of them. My best friend arrived having recovered from the events of the day to give support. My dear husband could not bring himself to join and sat with our pets in the living room. I knew he was emotionally drained and couldn't handle the upcoming conversation. This had to be the most difficult moment of my life made more so because of my deep love for them. I finally blurted the words out in a faltering voice with tears streaming down my cheeks. For minutes silence reigned as they attempted, in vain, to stem their own tears. I only knew that I did not yet want to leave my wonderful, devoted daughters who were moms themselves. How in heaven could I leave them?

Everything having been discussed while drinking wine, the conversation, thank heavens, turned to other events in our lives, most of them comical. Laughter replaced tears and it was decided another bottle of wine was called for. Glasses were replenished and funny stories were told. My husband arrived home from walking the dogs and I'm sure thought we had all lost our minds. I was grateful for the levity that followed and thankful my daughters had inherited my sense of humor. It would become terribly important for them in the coming days, weeks, and months. Thank you, God, for the gift of laughter.

The evening ended with all of us, my friend included, laughing and hugging one another. It was done. My husband and I collapsed in one another's arms.