They say the spirit of an adventurer never dies. I know this is true because of my husband Martin.  A life long outdoorsman and adventure seeker, Martin’s life changed forever at the age of 31.

In the summer of 2001, 13 years ago Martin’s symptoms first appeared, slurred speech and difficulty swallowing. Our first thought was a lingering head injury from a snowboarding accident. A year’s worth of doctor visits and tests would prove otherwise. Bulbar onset ALS and 2-3 years to live was the diagnosis Martin was given.

We had been married less than one year and at the time knew nothing about ALS. Maybe we had heard of it in passing, maybe not. We were overwhelmed and uneducated about what lay ahead. The first year we did very little in terms of making connections or planning for what was to come. It still seemed unreal. 

Even when walking became difficult, Martin continued to work in his lawncare and landscaping business. I recall many times helping him climb aboard his John Deere tractor and tying him to the seat. I would send him on his way and check in with him every so often by a small radio that I had taped onto the steering wheel. Martin soon had to rely on his employees to carry out the majority of the physical work. He would often sit and direct from his truck what needed to be done at a particular job. Selling his business and equipment was a sad and difficult decision, knowing that he would never again be able to work or support his family.

Our son Martin was born in May of 2003. It was the happiest day of our lives and knowing there would be another Martin Wallem to wreak his havoc on this world was very satisfying.  However, amidst the happiness there was also deep sadness, knowing that Martin may not be alive long enough to see his son grow up. The day that we went home from the hospital I wheeled the borrowed wheel chair with my husband holding our new son. My mother had brought our car around and Martin insisted on driving his wife and new child home. This was the last time Martin would ever drive us.

There would be soon become a lot of “lasts”. The last time Martin would speak words that I could understand, the last time I felt safe leaving him alone at home, the last time he ate food through his mouth, the last time he walked, the last time he breathed on his own, the last time he could kiss me. We mourned every loss. Before we realized what was happing this illness was devastating our lives. It changed every plan, every dream we ever had. It was around the time that Martin fell flat out on his face that we realized just how difficult things had become. Through the painful tears, swollen nose and eyes and scrapes we decided at that point that we needed help. Caring for a newborn and a husband who was becoming more and more dependent for every daily task was becoming more than I could handle alone.

We made contact with our regional ALS Association and local nursing agencies. The ALS Association provided patient support, some funding for equipment and assistance with locating other community services. As you may imagine the cost to care  for a vent patient in the home is astronomical. While insurance does cover many expenses, it does not cover all. There are many financial gaps that are left for the patient to fill, a near impossible task. This is where Hark’s Hope on the Horizon steps in. They assist families with the tremendous financial burden as well as locating community resources. Martin is able to continue living at home with me and our 11-year-old son, young Martin. Under the circumstances, his quality of life is better than we ever could have hoped for.

 So here Martin and I are thirteen years after the bomb was dropped into the middle of our lives. Neither one of us could really explain how we have survived to this point other than saying that we are truly two of the most fortunate people ever. The answer really lies in the support system that surrounds us. That is the key to survival. It is the key to quality of life, the key to finding happiness and satisfaction in the rubble. Strong, unconditional, unwavering love and support from both of our families, friends and even complete strangers that have come into our lives. For me sometimes I can’t understand how I have survived so long in this role as wife/mother/care provider and on any one of those given days (and trust me there have been many) when I thought I couldn’t bear it another moment I realized I was still standing when I should have fallen. Only then did I realize that I was being held up and held together by my family, my parents and the loving people in our lives. 

The only other explanation for Martin’s continued survival is his incredible ability to live fully in the face of terrible loss. At some point every one comes to a fork in the road where they have to choose how they will continue. Either sit home and let the illness dominate their existence and take every last bit of will or take the leap forward. Face each day with strength and determination. Not necessarily acceptance but making the best of what you have. Martin has done just that.

In his silent, but very much present way, he radiates life. His mischievous smile and hazel eyes are full of energy. Inside the motionless body is the same Martin as before ALS, that is what he clings to, that has not changed.

Martin continues to be an adventure/thrill seeker. It may not be pretty and sometimes its far from perfect but the feeling of being fully alive while in the out doors helps to sustain Martin’s existence. With the help of countless volunteers, family and friends Martin participates in adaptive hiking and skiing. He has been able to share his love of the out doors with our son by skiing and hiking along side him. The overwhelming feeling of accomplishment when we reach a summit or trail end is unexplainable. It is a true physical and emotional experience for all.

 Martin has also dedicated his time and energy to raising funds and awareness for ALS in schools. We have had the opportunity to meet and speak to several high school classes. This experience is not only rewarding for Martin but it gives him purpose.

Without a doubt my husband Martin is one of the most courageous and brave people I could ever hope to know. I am blessed that he is in my life. He truly makes those of us around him want to be better people and he inspires us to live fully in the moment. Martin continues to live his life by example with true courage, passion and an undying sense of adventure.

Thank you for your generosity in helping to keep Martin at home, surrounded by the best care possible and his loving family and friends.

To make a donation to Martin and his family please

click on the link below:

https://www.hark-als.org/donate.html

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