By Mikey’s mother | Published in KMCN
I made my son Michael a promise that I would tell his story. It is my hope that the telling of it may help less fortunate people cope with the pain that comes with diseases they have contracted.
Michael came into this world a very healthy boy. He had a great life, was an excellent student, great brother, son and friend.
His grandfather (my father) was his hero and not ever having a son of his own, Mikey was his ‘pride & joy’. “Boppa” as Mikey called him was an attorney, into City politics and later in the Kansas House of Representatives for two terms. So, Mikey learned to be a ‘good little citizen’ from the time he could walk. He made us very proud! His main goal was to become a doctor (to help people).
Playing football in Middle School, his legs started giving out when playing. All trips to the doctor confirmed nothing and were termed ‘growing pains’. But Mikey was never able to play on his team for his legs never were strong enough.
For several years, Mikey lived a normal life. In 1990 he developed a limp. This was not surprising as he was working seven (7) days a week, usually 10 hours a day, to support his family of two precious children and one that was expected. Mikey went to a chiropractor who told him his hip was out of place. Numerous visits did not resolve the limp.
In 1990, Mike fell into a boiling vat of beans where he worked as head chef. He suffered such horrible burns that when they removed his socks, shoes and slacks; his skin came with them. He had to have numerous skin grafts by a plastic surgeon and eventually they gave him tests to find out exactly why his legs were so weak.
The diagnosis was Multiple Sclerosis. This is a serious disease that has many different symptoms.
From one day to the next, a person never knew whether they would wake up blind, be able to walk, or have control of functions we take for granted. And, OH, the pain! MS attacks the myelin sheath of the spine and brain, causing lesions (tears) in the brain that are excruciating.
Due to his illness, loss of job, and no medical insurance, Mike’s bills started piling up faster. Doctors refused to see him. His wife left him, moving to Florida with her two children and the beautiful baby they had together.
He had lost everything. Even his ability to walk.
Mikey moved in with me and I tried desperately to get him on Medicare & Medicaid. We were denied even while the doctors had stated he would most likely never be able to work again. Meanwhile the pain grew. With no medical help forthcoming, we felt we were in the midst of a nightmare!
I wrote to the Governor, The President & First Lady Clinton. I wrote and called my senators, congressman and everyone I could think of who might help. WIBW & Topeka Capital Journal both took up our plight. It would be three very long years before Mikey received any kind of assistance. When that assistance finally came, the disease had progressed to the point that there was not much the doctors could do.
The one night that I will remember for the rest of my life was when Mikey was having more lesions form in his brain. Never had I heard such horrible sounds come from a human being. He was laying on the floor of his bedroom, literally rolling in agony, and there was absolutely nothing I could do for him.
In tears, I had picked up the phone to call 911 when a knock came at the door. Leery, I answered it and it was one of Mikey’s ex-coworkers and dear friend. I told him Mikey was sick and that he couldn’t have company. He kept insisting to see Mikey and said that maybe he could help.
I let him in and heard him talking to Mikey. Soon, the screams became fewer, and then I heard Mikey actually talking. But I also smelled something I had never smelled before and I didn’t like it. I went into his room and Mikey was on the bed. I said “Good Lord Rich, what did you do?”
Rich replied “I let him smoke a joint”. I had no idea what he was talking about! When pressed further, he told me. I said “WHAT? IN MY HOUSE?” My Lord, I had never been in trouble, not even a moving violation; I was as straight-laced as they come. But when I looked at my son, I decided then & there that I would do everything in my power to provide him with the relief that this gave him.
After Mikey got on assistance he wanted to get his own apartment and live with an aide. I wanted him to stay with me, but I also knew that it would not be many years before Mikey would be unable to assert that independence for he was wheelchair bound. Mikey had medications the doctor prescribed: Marinol, Roxanol, and Fentynl, Anti Anxiety, Anti-Depressants, Muscle relaxers & more. None helped him like the marijuana. None even came close. Many of his doctors stated that if the Cannabis helped, and since he couldn’t work, drive, etc. to let him have it. Many stated that ‘this drug, while illegal, had it’s place’.
In 1994 Mikey’s aide had to call an ambulance for he was experiencing exacerbation of MS. By his bedside they spotted his bag of Cannabis. He was immediately arrested. All of Mike’s household property that he had acquired with his disability check was sold at a police auction. His friends and family bought some of it back for him. He owed $2,500 for not having a tax stamp.
The laws that were meant to get big time cartels took everything he had. He started back at square one. Sick and heartbroken, he was in a fight for his very freedom now. I thought to myself that the justice I had always had respect for was not the” justice” I respected much anymore.
This happened two more times, one time Mikey was kicked out of his wheelchair by an over zealous sheriff who later left his office in disgrace. While he was given probation, his P.O. and the judge admired Mikey greatly, for he knew that what he was doing was illegal and he freely admitted it.
The last time, the prosecutor would love to have sent Mikey to prison. That is when my faith in the Justice system returned. For his Probation Officer put his job on the line and the Judge had the compassion of the judge of old, SOLOMON! The PO stating he knew Mikey smoked Marijuana, but he also knew Mikey did it for pain, not profit! The Judge said I am sick of putting very ill patients in jail & then asked me to go to the Legislature to get MC passed. That was in 1995 & the newspaper went wild for it passed one section. By a BIG margin. Killed in the judicial committee before it hit the floor of the senate. But, the letters he received & the calls the judge received from Representative & Senators showed me that there was still compassion in our lawmakers. It has been since called Mikey’s bill.
The war on drugs is not working. We are not asking for the legalization of drugs, we are asking for the right for very ill & terminal citizens of Kansas to be able to control their pain in the manner in which they can be free of pain. Not drive & drink, not do drugs & drive, we have laws on the books for both of them. If something like this ever happens in your family, rest assured you would feel the same as I.
The last seven years of his life, he spent on feeding tubes and a home ventilator. He was the most positive & loving person I ever knew. But, he could no longer be allowed to have the only thing that helped him. Cannabis.
Mikey lost his battle last March 15th. I had promised him I would continue to fight for patients to have that right. I promised it to him the night before he died and that the wonderful PO and the Judge would continue to get a Christmas card from me every year, I intend to keep that promise. For I feel someday the lawmakers of our Great State of Kansas will let their compassionate side overrule the stigma placed on this drug that works miracles.
The Kansas Medical Cannabis Network was initiated in August 2009 by cheryl riley of Potwin. A prospective patient herself, riley had accepted a position as Kansas Director for the American Alliance for Medical Cannabis, a national medical cannabis organization. If you know of someone who needs medical cannabis in Kansas, please tell them about this group.